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SLL/CLL--Bill's Medical Journal

Welcome to our Web Site. It has been created to keep our family and friends updated on Bill's condition, treatments and medical progress in his continuing battle with Small Lymphocytic Lymphoma/Chronic Lymphocytic Leukemia (SLL/CLL) that was first diagnosed in December, 1999--the latest treatment has been a 'Mini' Allogeneic Peripheral Stem Cell Transplant (SCT)--AKA Bone Marrow Transplant--with a matched unrelated donor on May 11, 2002. We also developed this site to share our knowledge and experience with others who may have a similar diagnosis and/or facing similar treatments. We certainly are not medical experts but we have benefitted greatly from other journals and internet support lists and thought we'd try to add just a little to this method of patient education and support. Finally, it's a central place where we can easily find all our needed medical info. and history which is very useful when 'chemo brain' sets in!! Therefore, for many, there will be 'way too much information' of a more technical nature and for others, there may be too much personal information--just scroll through it if uninterested



**************************************
MEDICAL HISTORY-SUMMARY (Cliff Notes version)

--12/99 Dx'd at age 44 with Stage 4 Low grade B-cell Lymphoma (Small Lymphocytic Lymphoma/Chronic Lymphocytic Leukemia-- 12/99 CHOP x 6 (Chemo)-- 4/00 Remission-- 8/00 Relapse after 4 months-- 9/00 Fludarabine x1 and ESHAP x 2 ((Chemo) in prep for Auto SCT.-- 12/00 Autologous Stem Cell Transplant(TBI,cytoxin and Rituxan protocol) at Johns Hopkins/Baltimore-- 12/01--Relapse-- 2/02--Rituxan (monoclonal antibody= 3 x4 weeks -- 5/11/02 Mini-allogeneic Stem Cell Transplant(matched unrelated donor-MUD) at Dana Farber Cancer Institute in Boston
*************************************
Click on 'History' (top left) or click 'Look at past journal entries' (bottom of page) for following:

1.Facts and Statistics on Blood Cancers
2. Internet Web Links
3. Bill's Medical History Summary

We often get the question "HOW CAN I HELP?" The best way you can help us is to help all that are faced with this and similar illnesses. Here are some ideas:

1.Donate Blood (contact local Hospital or Red Cross
2.. Donate Platelets (same contacts as for blood donations)
3. Register as a Potential Marrow/Stem Cell Donor to help others going through a transplant-- Contact National Marrow Donor Program (NMDP) at http://www.marrow.org/

4. Volunteer or Donate to a Charity that supports blood cancer research and provides patient information and support--EXAMPLES BELOW:

a. Leukemia and Lymphoma Society:
http://www.leukemia-lymphoma.org/

b. Lymphoma Research Foundation:
http://www.lymphoma.org/

c.CLL Foundation
www.cllfoundation.org

d.Association of Online Cancer Resources
http://www.acor.org/help.html





Contact us at Email address link at bottom of page

You can contact us individually if you prefer:
Bill= Billk130@aol.com
Kim = Kimwk@aol.com

PLEASE SIGN THE GUESTBOOK

Thanks for checking in!!

Bill and Kim

Journal

MOST RECENT ENTRIES
CHRONOLOGICAL JOURNAL FOLLOWS


SLL/CLL--Bill's Medical Journal

Welcome to our Web Site. It has been created to keep our family and friends updated on Bill's condition, treatments and medical progress in his continuing battle with Small Lymphocytic Lymphoma/Chronic Lymphocytic Leukemia (SLL/CLL) that was first diagnosed in December, 1999--the latest treatment has been a 'Mini' Allogeneic Peripheral Stem Cell Transplant (SCT)--AKA Bone Marrow Transplant--with a matched unrelated donor on May 11, 2002. We also developed this site to share our knowledge and experience with others who may have a similar diagnosis and/or facing similar treatments. We certainly are not medical experts but we have benefitted greatly from other journals and internet support lists and thought we'd try to add just a little to this method of patient education and support. Finally, it's a central place where we can easily find all our needed medical info. and history which is very useful when 'chemo brain' sets in!! Therefore, for many, there will be 'way too much information' of a more technical nature and for others, there may be too much personal information--just scroll through it if uninterested



**************************************
MEDICAL HISTORY-SUMMARY (Cliff Notes version)

--12/99 Dx'd at age 44 with Stage 4 Low grade B-cell Lymphoma (Small Lymphocytic Lymphoma/Chronic Lymphocytic Leukemia-- 12/99 CHOP x 6 (Chemo)-- 4/00 Remission-- 8/00 Relapse after 4 months-- 9/00 Fludarabine x1 and ESHAP x 2 ((Chemo) in prep for Auto SCT.-- 12/00 Autologous Stem Cell Transplant(TBI,cytoxin and Rituxan protocol) at Johns Hopkins/Baltimore-- 12/01--Relapse-- 2/02--Rituxan (monoclonal antibody= 3 x4 weeks -- 5/11/02 Mini-allogeneic Stem Cell Transplant(matched unrelated donor-MUD) at Dana Farber Cancer Institute in Boston
*************************************
Click on 'History' (top left) or click 'Look at past journal entries' (bottom of page) for following:

1.Facts and Statistics on Blood Cancers
2. Internet Web Links
3. Bill's Medical History Summary

We often get the question "HOW CAN I HELP?" The best way you can help us is to help all that are faced with this and similar illnesses. Here are some ideas:

1.Donate Blood (contact local Hospital or Red Cross
2.. Donate Platelets (same contacts as for blood donations)
3. Register as a Potential Marrow/Stem Cell Donor to help others going through a transplant-- Contact National Marrow Donor Program (NMDP) at http://www.marrow.org/

4. Volunteer or Donate to a Charity that supports blood cancer research and provides patient information and support--EXAMPLES BELOW:

a. Leukemia and Lymphoma Society:
http://www.leukemia-lymphoma.org/

b. Lymphoma Research Foundation:
http://www.lymphoma.org/

c.CLL Foundation
www.cllfoundation.org

d.Association of Online Cancer Resources
http://www.acor.org/help.html





Contact us at Email address link at bottom of page

You can contact us individually if you prefer:
Bill= Billk130@aol.com
Kim = Kimwk@aol.com

PLEASE SIGN THE GUESTBOOK

Thanks for checking in!!

Bill and Kim

Journal
3/3/03

I met with Nuclear Medicine guru at Johns Hopkins on 3/7/03 and he agreed that I should try Zevalin. While concerned that it may be tough to manage due to all my prior treatments, he is willing to give it a shot (I think my last one). One of the requirements for Zevalin is that there needs to be minimal bone marrow involvement. Fortunately I qualify since my SLL/CLL has always involved problems with nodes versus bone marrow and high WBCs.(Last BMB after transplant showed 0% bone marrow involvement and 100% donor cell. My WBCs always run in 3-5K range.) I do have some liver problems (bilirubin at about 10) which they believe is caused by tumor blockage of liver. Tomorrow (3/11/03)I will go for some minor surgery at Hopkins to have a liver catheter put in (one night hospital stay) and then if this does the trick, will start Zevalin process a week later on 3/18.



PLEASE NOTE---If you read through all or parts of my history, you will see a series of events that are both positive and negative. Admittedly, most is negative. IN MY CASE I have been chasing a remission for almost 4 years now and unable to catch it no matter what I try.. Bottomline is that none of the treatments are working and they have taken me off of them (i.e., no more Rituxan and Pentostatin). Apparently no real options left as IÂ’ve exhausted both traditional and more experimental therapies. With CHOP,Auto SCT With TBI and Rituxan, and Mini Allo transplant all behind me, I probably wouldnÂ’t qualify for any clinical trials either and as my Doctor said, even if I did qualify, quality of life would be very poor and IÂ’d probably still become very sick and end up spending all my time in hospital with no positive results.(we are looking into Zevalin as a last resort) So who knows what my apparently short future will bring but I am totally at terms with whatever happens since I know IÂ’ve done my research and IÂ’ve tried all of the therapies available.
I feel bad posting as I hate to discourage people struggling with same or similar disease. While clear to most reading these lists, I can't emphasize enough especially those new the these lists) the need to NOT use one specific case/example as a way of predicting your particular outcome or reaction to various treatments/disease progression. As most know, everyone reacts differently to medications, everyone's disease is different, everyone's immune system and strength to deal with various side effects differs etc. etc. If you read these lists thorougly, granted you will find some sad and discouraging stories but keep digging and you will find just as many positive stories with great outcomes. SO HANG IN THERE, LEARN AS MUCH AS YOU CAN, TALK TO YOUR SPECIALIST DOCORS AND EXPLORE ALL POSSIBILITIES AND MAKE AN INFORMED DECISION...USING THE TESTIMONIALS AND EXPERIENCES OF OTHERS ON THIS LIST WILL BE INVALUABLE as you discuss alternatives with your Docs and BE SURE TO FOLLOW UP WITH OTHER EXPERT ADVICE (i.e., oncologist who specializes in your disease. Sorry to sound preachy but just don't want my story to be used the wrong way or discourage those on a similar treatment path as me.

3/1/03
As summarized below, basically running short on options. During the past three years I have had CHOP, ESHAP, Autologous SCT with Rituxan and Total Body irradiation, Rituxan alone, Mini allo SCT with full matched unreelated donor. All treatments were after relapse following about 6-12 months of remission. Curently clean in marrow, wbcs around 3000. Liver function just jumped in last day or two (5.5 bilirubin from .5. Fear is this is caused by drughs and/or presure from tumors. Not very uncomfortable except for terrible mouth pain from GVHD and radiation--I am on lots of opain killers Ony current plan for possible treatment is Zevalin and meet with Dr. Wahl at Hopkins to discuss this option though I hear he is not very keen on going this route give my history. Stay tuned.

2/18/03 Just returned from Hopkins where news not good and I really canÂ’t sugar coat it.. Had a CT scan which showed improvement in neck, no change in chest and 25% increase in tumors in abdomen area (in 5 weeks). Bottomline is that none of the treatments are working and they have taken me off of them (i.e., no more Rituxan and Pentostatin). Apparently no real options left as IÂ’ve exhausted both traditional and more experimental therapies. With TBI, CHOP, Rituxan, Auto transplant, Mini Allo transplant all behind me, I wouldnÂ’t qualify for any clinical trials either and as my Doctor said, even if I did qualify, quality of life would be very poor and IÂ’d probably still become very sick and end up spending all my time in hospital with no positive results. So who knows what my apparently short future will bring but I am totally at terms with whatever happens since I know IÂ’ve done my research and IÂ’ve tried all of the therapies available.
` My biggest heart breaker/concern is my family but they are strong and will get through this—my daughters (age 11 and 15) are not aware of current prognosis and plan to keep it that way for now since things still very uncertain. Kim continues to remain strong for me. I know this is such a tough time for her since she feels that she has to remain upbeat, but as always she’s been with me every step of the way.
Right now I’m keeping busy trying to set up a surprise trip for the family to the Caribbean in the next few weeks—even if I’m not feeling great, a change of scenery and some thawing out will do us all a lot of good!!

2/17/03 The last month has been tough with lots of pain in throat and mouth. This is apparently is caused by a combination of the Radiation and GVHD of the mouth. Very difficult to talk or eat and need lots of pain relief. Just started on a pain patch which gives continuous pain relief ---takes the edge off a bit but still very painful. Neck swelling is essentially gone so radiation has done itÂ’s stuff there, though again, just a temporary solution.


1/11/03 Had some problems breathing and a lot of discomfort on left side. Dr. Mills decided to hospitalize me to closely monitor---concerned that tumor may be blocking my air passages. No major problems and released 1/13/03. I do seem to be running a higher blood pressure which has never been a problem for me. DoctorÂ’s unsure of what is causing this. I am wearing a patch to help conrol it.

1/10/03 Had first Radiation treatment for large tumor in neck area with Dr. Mills in Reston ,VA. Will have 11 treatments (daily)
1/9/03 Received first treatment of Rituxan and 2nd treatment of Pentostatin. Thought is the combination may help to reduce tumors as well as control GVHD. Will do 3 cycles of Rituxan (every other week) and then see where things stand.


January 4. 2002

As a followup to last entry, CT scans show that I have relapsed. I have a very large nodal mass in neck (5x10 cm) and others throughout body in the 4-5 cm range, all of which have grown or newly appeared since last CT scan around 6 weeks ago. My marrow is clean, I am 100% donor cells,all my blood counts are good and I have GVHD. These are signs that SHOULD point to a successful SCT but something has gone amiss...thinking that Lymphoma may have transformed into a much more aggressive type though it's always been aggressive. Basically looks like from a treatment standpoint we are down to radiation of the neck where I have the very large nodal mass and causing a lot of discomfort (e.g., soreness, congestion, deafness in ear). I will also start on Rituxan to attack other nodes. This will be taken in conjunction with the Pentostatin I am already taking for GVHD. My
oncologist is looking into feasibility of trying Zevalin too.
I think that these are all temporary fixes especially given the obvious aggressiveness of my disease.
Unfortunately looks like I am running out of treatment options that might provide a hope for a long term
remission. Prognosis doesn't look good but the battle will continue. I also plan to consult with Dr. Gribben in Boston when he returns next week to be sure I am not missing any of the options.


Thanks again for everyone's continued support and advice.

1/2/03 CT scans show fairly large nodes in chest and stomach, in addition to huge node in neck---it appears that transplant not working. All have worsened in last couple of months. I have relapsed and options are few---very poor prognosis at this point since I have exhausted most of the best therapies. Looking into Rituxan or Zevalin which Doctor will get back to me on. It seems that is now a matter of managing symptoms with little hope for a long term remission, let alone a cure. Will start radiation due to discomfort in neck and fact that basically deaf in left ear as a result of large nodes causing blockage.


December 30, 2002 (Day 229)

12/30/02-- Well I don’t seem to be ending 2002 on a very good note. When I went in for my 1st Pentostatin treatment for GVHD at Hopkins on 12/19, I had a bad sinus infection and a very large lump in my neck. Basicallly the whole left side of my neck/face is sore and I am virtually deaf in my left ear. I have had consistent sinus and ear problems since being diagnosed. Well they did a CT scan of sinuses and neck and found a very large nodal mass in the neck. Doctor said that it is either the Lymphoma coming back or possibly the disease has transformed—neither case is very encouraging though he didn’t go into any details. I was then scheduled for a needle biopsy of the neck which was done on 12/20/02 and confirmed the Lymphoma though don't know yet if it has transformed into a more aggressive type. I go back for a full CT scan on Thursday, January 2nd at which time treatment options will be discussed. If only issue is in the neck then probably will have to have radiation treatment for about a month. If Lympohoma is spreading elsewhere than guess other options will need to be explored, though don’t know what those might be at this point.

This is frustrating in that only a month ago, the scans and bone marrow biopsy showed only small lymph nodes, nothing in the marrow and chimerism results indicated 100% donor---amazing how things can change overnight. Meantime, I am on the Pentostatin treatment for my GVHD which seems to be somewhat under control (still at 45 mg prednisone).

I kept thinking that GVHD and infections were my major concern---didnÂ’t think IÂ’d also be worrying about possible relapse at this point in the game. Oh well----I am used to these set backs and after 4 years of this, plan to keep on fighting the battle using any weapon I can get my hands on.

Happy New Year to all and here's to a healthier 2003 for all battling this and other illnesses!

December 3, 2002

Guess I've pretty negligent in updating this journal. The following are some rough notes on what has been going on in the past month or so. Probably won't be updating that often unless something significant to report.

12/2/02 Results of mouth biopsy show Chronic GVHD. Will be put on protocol of Prednisone and Pentostatin for six months. This means that I stay at 45 mg of Prednisone for 3 months and then if improvement, will begin to taper. Will have Pentostatin infusions every other week for six months. Not thrilled about this as once again, I will now be even more immunosuppressed and subject to infections than before due to the Pentostatin. All is scheduled to start on December 13th. IGG results were about 580 so theyÂ’ll retest again on the 13th to see if I need another IVIG infusion.

10/15/02 No real changes. Going to Hopkins weekly for check ups and Zenapax infusions. Skin and gut seem to be doing better though still at 60 mg of prednisone. Will need to see what happens in a couple of weeks when prednisone is at lower levels (e.g. <30). Apparently I am at a big risk of developing chronic Graft vs Host disease based on risk factors that include 1). Donor was unrelated and 2). IÂ’ve already developed severe acute GVHD. Still on major activity restrictions. Both the drugs I am taking and fact that I have GVHD means that my immune system is very weak. Also, I have very low immunoglobulin levels (IGG. IGA, IGM) and have to get IVIG infusions once a month. Scheduled for 6 month check up at Dana Farber in Boston on 11/19 to include Bone marrow biopsy and CT Scan. Since high dose prednisone can cause bone problems, had a bone density check too.(e.g., osteoperosis)

10/24/02 The bone density shows no evidence of osteopenia in the lumbar spine,
and overall bone mineral density for the right hip is within normal
limits, but the score for the femoral neck region meets the criteria for
osteopenia. Started on Fosomax (70 mg) once a week and will take for a year. Will need to get new scan in a year.

11/4/02 Reduced Prednisone from 30 to 20 mg. Had IVIG Treatment and Zenapax treatment. IGG was at 465, three weeks after last IVIG treatment. Will check IGG levels again on 11/28. ‘N’ insulin for diabetes dropped to 4 at night (if over 150) and still at 20 mg in morning if over 100.

11/12/02 Skin biopsy shows continued GVHD of skin (acute grade 2). Prednisone upped from 20 mg to 45 mg. Mouth GVHD thought to be Chronic and may have to do mouth biopsy in a couple of weeks. Night insulin of ‘n’ raised back to 8.

11/25/02 Appointment with Hopkins. Off of the Zenapax protocol since I kept flaring at around 25 mg. Will stay at 45 mg prednisone for at least 3 months and probably put on Pentostatin protocol. Had a biopsy of the mouth since they suspect chronic GVHD (which needs to be shown to be eligible for Pentostatin protocol). They checked IGG levels and will have that next week as well to determine if I should get another IVIG treatment. Will get results and actual plan of action week of December 1st. Will continue on the NPH insulin to control sugar levels (24 mg in a.m. and 10 mg in p.m if sugar level over 100)
Also got the results of bone marrow biopsy from Dana Farber and basically no signs of CLL which is great news. CT scan showed some very small nodes in neck but nothing to be concerned about.
I am not at all uncomfortable from mild skin GVHD though the very dry mouth is not that great and biopsy still hurts quite a bit, though they said it wouldnÂ’t bother me at all ( I think they pinched a nerve as lip is still somewhat numb after a week).

12/2/02 Results of mouth biopsy show Chronic GVHD. Will be put on protocol of Prednisone and Pentostatin for six months. This means that I stay at 45 mg of Prednisone for 3 months and then if improvement, will begin to taper. Will have Pentostatin infusions every other week for six months. Not thrilled about this as once again, I will now be even more immunosuppressed and subject to infections than before due to the Pentostatin. Not positive I am doing the right thing here as I am not that uncomfortable but they say itÂ’s important to try to nip the GVHD in the bud early. Need to do a bit more research before I agree to yet another toxic treatment that is only in Phase II trial. All is scheduled to start on December 13th. IGG results were about 580 so theyÂ’ll retest again on the 13th to see if I need another IVIG infusion.

Other than that things really are going o.k. I feel tired a lot but otherwise not that uncomfortable. I’ve made a decision to take a disability/early retirement from my company effective 1/1/03. This was a very tough decision after working for 25 years with same firm. However, it’s a good deal and the time is right after 4 years of battling this disease. In addition to having some fun when I’m feeling well, I plan to do a lot of volunteer work and if after a year or two all is ‘calm’ on the health front, will do some consulting work. I am keeping busy getting everything in order for this big change but looking forward to it.

October 13, 2002 (Day 155 post transplant)

Just wanted to post a quick update that nothing has really changed much. My stomach problems are doing much better and no new flare-ups of skin rashes. However, I am still at 70 mg Prednisone (steroids) and tapering down 10 mg every 4 days. Real test will be if GVHD doesn't flare when I am at lower levels of steroids (e.g., 40 and below). I am eating most things now without problem though due to glucose problem have to avoid all sugar. This is cruel and unusual punishment as the steroids cause constant munchies and then I am not allowed to eat sweets--it's a real challenge! Hopefully glucose problems should clear up once steroids at lower levels---in meantime, still have to check insulin and give myself insulin shots several times a day.
I am going to Hopkins weekly for Zenapax treatment and checkups. I am also scheduled to go back to Dana Farber for 6 month tests/ checkup on November 19th. Nothing much new to report.


Tuesday, September 30, 2002 (Day 143 post transplant)

Well it’s been a fairly uneventful week—Spending a lot of time at Hopkins getting tested and re-treated to get Graft vs Host Disease under control. The 1 ½ hour drive to Baltimore is really getting to Kim and me but at least we are grateful to have top notch facility so nearby.

I am feeling better but apparently still having trouble kicking this. Last week they did another skin biopsy and it showed that GVHD still there though a bit milder before. Before it was severe at grade 2/3---now it’s a ‘mild 2’. I had tapered down to 40 mg of prednisone and was looking forward to kicking it altogether…..BUT they now are worried that the GVHD will flare up again and they decided to go for another Super blast by raising steroids to 160 mg which is very high. I’ll taper to 120 after 4 days and will continue to go down from there---still like taking 1 step forward and 2 steps back. I seem to be getting close to lifting some of the restrictions around eating and going out and then have to start over again. Oh well what ya goin’ to do.

I am having a lot of trouble with Glucose levels which is related to all the steroids and the intravenous feeding. I am however starting to eat a lot more, and having fewer stomach problems-- today I got a call to stop the IV feeding now and just try regular food.. Great news since carrying around this bag everywhere has been a real pain. I have to check my insulin level at home 3 times a day and give myself insulin shots as needed--not a big deal. I am now going to Hokins 3 days a week and they are following my case very closely.

Other than that, very tired, and weak (I am really feeling the muscle deterioration caused by the steroids) and don’t have a lot of energy though have to admit the steroids are having a positive impact by helping boost my energy level a bit. Keeping busy around the house but can’t wait until I feel well enough to get outside and to least take some walks. I am determined to get out sailing before season ends but just not ready to do that yet. Anyway, that’s the latest update—not exactly an exciting story but as we say, ‘boring is good’ as it relates to this subject!

* Note: Graft vs Host Disease (GVHD) occurs when the donor cells attack not only the cancer cells but also other parts of the body because it sees them as foreign--typically hits skin, liver, Gastro Intestinal (GI)Track. GVHD is one of the major risks of transplants.


Sunday, September 15, 2002 (Day 127 post transplant)

ItÂ’s been great being home again after 2 weeks in the hospital. Things are rolling along slowly. I continue on 24 hour TPN (Intravenous feeding) with a portable pump I have to carry around with me. I am slowly trying small amounts of food (jello, juice, Italian ice, rice, noodles) and it seems to be working o.k. IÂ’ll continue on the TPN for a while but next week they may cut it back to 18 or 12 hours which would be great because I could do it at night and be unhooked during the day.

Skin GVH seems to be better though nurse spotted possible new rashes which need to be monitored closely---if rashes resurface it basically means that I have failed this protocol and theyÂ’d need to try something else. Keep your fingers crossed.

Overall I’m not in any major discomfort but am extremely tired and weak and pretty shaky on my feet. One of the side effects of the mega steroids I am on is that it causes muscle deterioration. When I got home from the hospital, I could barely make it up the stairs—legs like rubber. So I’m trying to walk and exercise each day—apparently I won’t be able to build muscle while on the steroids but can slow down the deterioration.

Lots of unknowns as we battle this GVHD and have no idea what is around the corner so once again, itÂ’s just one day at a time.

* Note: GVHD occurs when the donor cells attack not only the cancer cells but also other parts of the body because it sees them as foreign. This is one of the major risks of transplants.


Sunday September 8, 2002 (Day 120)

Looks like I'll finally get sprung from hospital tomorrow. Feeling better and the GVH in the skin and gut have improved. Been on very high dose IV steroids, slowly being tapered, and not allowed to eat anything for about a week (all nutrients given intravenously). I'll need to continue the IV feeding when I go home so I'll be carrying around a pump to get the juices in--fun stuff. Slowly they'll let me try small amounts of liquid and work up to eating in the weeks ahead---idea is to 'rest the gut' and let the GI tract heal. Will be coming back to Hopkins as outpatient 1-2 days a week and will also continue on the Zenapax for 24 weeks (IV once per week). Dr. Gribben in Boston is fully informed and agrees with plan. Basically now have 3 groups I'm dealing with ---Hopkins Oncologist (Flinn), Hopkins GVH team (Vogelsang) and Boston team (Gribben). It's a bit confusing but they all seem to be coordinating without a problem and I get the benefit of 3 expert opinions as issues arise.
Feeling pretty good ----just nervous about what will happen when steroids are tapered (ie, will GVH get worse) and about picking up an infection.....but again docs pleased with results so far so that's a good sign.
All for now.


Friday August 30, 2002 (Day 111)

First the good news.....my 100 day tests to include CT scan and bone marrow biopsy were positive in that the amount of cancer continues to go down (currently about 10 % in marrow, and smaller nodes in chest and pelvic area than prior tests pre-transplant.
The bad news is that the 'mild' Graft vs Host Disease we were hoping for ended up rearing it's ugly head in a pretty severe way. I've been in the hospital since last Tuesday at Hopkins in Baltimore as they try to battle it. Currently have Stage 2-3 Graft vs Host disease (GVH) in mouth and on skin and severe GVH in the gut. I'll probably be here at least another week. Treatment is a protocol that includes extremely high doses of steroids given intravenously (e.g., first 2 doses were 1000mg versus the 90 I was on immediately following the transplant.) I will also be getting weekly IV of Zenapak for 24 weeks. The skin is already starting to clear up a bit but Gut will apparently be slow going. No food allowed for now(not that I have any interest in eating) and I will be getting nutrition intravenously. Just to add to the fun, have to have the Hickman put back in chest for the feeding and for all the blood draws and intravenous drugs I'll need to take down the road. Once again, I am at huge risk of picking up other infections due to my overall immunosuppressed system....especially with the huge doses of steroids being given. Feels kind of like I am starting all over again. This disease is so maddening as it is all the side effects and dangers of treatment that cause the biggest risk. It's sometimes difficult to remember the end game of curing the cancer when you are constantly focused and fighting these other potentialities.
. Fortunately I am at a great hospital with a lot of expertise in GVHD and I continue to remain as optimistic as possible though there are moments when it gets pretty tough.

August 16, 2002 (Day 97 post transplant)

The last few weeks havenÂ’t been the greatest but IÂ’ll preface all this by saying the Doctors still think IÂ’m making great progress---hopefully they are not just trying to be overly optimistic with me but donÂ’t think thatÂ’s the case.
Any way, for the last several weeks have been very weak and tired all the time—don’t really have the energy to do much of anything. I’ve also been having very bad sinus infections and low grade fevers. When I had blood level checked a couple of weeks ago, found that my immunoglobulin level was extremely low, as it was prior to transplant. This is another measure of the strength of the immune system so this just is one more thing that puts me at an even higher risk of infection. So this week I started IVIG treatments at Hopkins (3 day /10 hour infusions) and will need to have them monthly. Similar to last December, on the first day of treatment, I had a severe reaction (shaking chills and trouble breathing) but they were able to give me some extra medication that helped and I was fine the next 2 days. My daughters were in the room with me and I think it scared them to see this---I hate them having to go through all this with me but they’ve been great.

Just to add icing to the cake, for some reason my white blood counts and neutrophil levels had dropped to very low levels too—one more thing putting me at risk of infection. I am now taking neupogen shots daily to help boost this white count level. Unfortunately I’m very sensitive to this medication and it is causing severe back/leg pain which is a common side effect.

So all and all, I not the happiest of campers right now but I know that this too shall pass. This must be the post transplant phase where the ‘no pain/no gain’ credo keeps you moving forward.

IÂ’m off to BostonÂ’s Dana Farber on August 20th to get my CT Scan and Bone marrow biopsy check so may know more after that.

CURRENT BLOOD COUNTS

WBC=2.3 (Norm= 4.1-10.9)
RBC=3.3 (Norm= 4.20-6.30)
HGB= 11.6 (Norm= 12.0-18.0)
HCT= 32.1 (Norm= 37.0-51.0)
PLT= 171000 (Norm= 140-440)
Neutrophil=70 (Norm= 1500-7800)
Lymph= 3040 (Norm = 1100-4800)


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CHRONOLOGICAL MEDICAL JOURNAL

Wednesday, April 10, 2002 at 07:31 PM (CDT)

DISEASE AND MEDICAL HISTORY SUMMARY

While a summary of my medical history is in the very first journal entry (HISTORY SECTION), the following is an Overview

THE DIAGNOSIS

I was ‘officially’ diagnosed in December 1999 after experiencing about six months of on and off pneumonia, ear infections, and very swollen glands in my neck. At first I was thought to have a severe case of Ebstein Barr Virus (better known as Mono) but finally when the lymph nodes in my neck did not improve, they did a biopsy of the neck node. I got the call on December 2, 2001 and was told that I had Non-Hodgkins Lymphoma –specifically SLL/CLL--and needed to see a hemotologist/oncologist right away. I had no idea what this disease was and had only barely heard the name before. Well from there, everything moved all too quickly.

ABOUT MY SPECIFIC DISEASE

The terms small lymphocytic lymphoma (SLL) and chronic lymphocytic leukemia (CLL) refer to opposite ends of the spectrum of the same cancer. When the majority of cancer involves the blood and bone marrow, doctors refer to the disease as chronic lymphocytic leukemia. However when the cancer chiefly involves the lymph nodes, it is referred to as small lymphocytic lymphoma. It is the most common adult leukemia and together with small lymphocytic lymphoma account for 6%-10% of all cancers involving the lymph system. Mine was mostly in the nodes.
Chronic lymphocytic leukemia is a cancer that involves the mature lymphocytes of the body. There is a marked increase in the number of abnormal lymphocytes due in part to prolonged cell survival. This is not a rapidly growing cancer but the abnormal cells accumulate in blood, bone marrow, lymph nodes and spleen resulting in enlargement of these organs and decreased bone marrow and immune function. This disease interferes with the normal production of antibodies and immunoglobulins leading to infections.
SLL/CLL had other unique features not present in other kinds of lymphoma. SLL/CLL may be associated with immune mediated destruction of red blood cells and platelets. These are referred to as autoimmune mediated cytopenias. Patients with SLL/CLL may also experience repeated infections from low levels of normal immunoglobulin production.

FIRST THERAPY

I made the appointment with a recommended local Oncologist and in the meantime became very sick again. On the day of the appointment, I could barely stand due to severe dizziness and high fever but Kim managed to drag me to the doctor. You can imagine the surprise of the whole office when I showed up for this first appointment in this condition. They whisked me into a room and the doctor came in and I met him for the first time. I barely could hear what he was telling us since I was so out of it but after checking my vitals, they sent me immediately to the hospital where I stayed for over a week—I had pneumonia again and based on CT scans, they determined that there were swollen lymph nodes extensively in chest, abdomen and pelvis. My doctor recommended that I start CHOP chemotherapy immediately, while in the hospital and I agreed.
It was pretty unnerving as things moved so quickly I did not have time to do any kind of research on this—however, I didn’t have many options. After my first therapy I was already doing much better and nodes subsided substantially. I also took a drive about 11/2 hours to Johns Hopkins in Baltimore to get a second opinion and they agreed that I was doing the right thing with the Chop treatment.

RELAPSE AND AUTOLOGOUS BONE MARROW/STEM CELL TRANSPLANT—12/00

I am not going to go through everything that happened. In a nut shell, after 6 treatments (1 every 3 weeks) the CHOP did its thing and put me in complete remission---BUT it only lasted for about 4 months. In August of 2000 I had relapsed and it was recommended that I have an auto stem cell transplant.
In a bone marrow transplant, the patient's diseased bone marrow is destroyed and healthy marrow (or blood stem cells) are infused into the patient's blood-stream. In a successful transplant, the new bone marrow migrates to the cavities of the large bones, engrafts and begins producing normal blood cells. An Auto transplant is when they take out your own blood stem cells and then zap you with lethal doses of chemo and radiation which clean out the marrow and hopefully kill the disease for a long time. They then reinfuse your own purged stem cells back. For my specific disease, this is not a cure but it has proven successful in giving long term remission.

So I went ahead with the auto transplant (Rituxan, Cytoxin and Total Body Irradiation protocol) in December 2000, tolerated it well and again was deemed to be in complete remission following the transplant. Unfortunately, the remission lasted much shorter than expected and in January, 2002 after very bad sinus infections, significant reduction in my platelets, another bout of pneumonia and a week in the hospital I was retested and it was determined that I had relapsed.

ANOTHER RELAPSE AND ON TO MINI ALLO TRANSPLANT

At that point a mini-allogeneic transplant was recommended. This is very different from an auto transplant in that instead of your own stem cells, a donor’s cells are used. Ideally you try to use a related donor—typically a sibling—but my brother and sister were not matches so we had to go the donor route. This is called a MUD transplant which stands for matched unrelated donor.
They only do related donor transplants at Hopkins so I was referred to Dr Gribben at Dana Farber Cancer Institute in Boston who is a well known expert in both my specific disease (CLL) and with transplants. It was agreed that I should go ahead with a non-myloblative allogeneic transplant—better known as a MINI Transplant. They began the donor search process which is a world wide search coordinated through the National Marrow Donor Program (NMDP). I was surprised to hear that there are over 4 million people registered but even with that, it is sometimes difficult to find a perfect match. I now had to wait to see if I would be lucky. After about 8 weeks, they determined that a 30 year old woman was a perfect match—that’s all I am allowed to know about the donor until a year after the transplant----but I’m sure she is a very special person to have volunteered to join the marrow bank and be a donor to a total stranger.

What is a Mini-Transplant?

Mini-transplant is the term used to describe several different types of transplant that share one common feature: they all use lower dosages of chemotherapy. The term mini-transplant, however, is somewhat misleading. Although patients receive less toxic dosages of chemotherapy and/or radiation, they are still at risk of developing some serious side effects. Chief among these is graft-versus-host disease (GVHD)-a condition that occurs when the donor's immune system cells attack the patient's organs and tissues. When it is mild, GVHD can cause a skin rash or intestinal discomfort. More severe cases of GVHD can cause blistering, peeling skin, and serious liver, stomach and intestinal problems that may be life-threatening

Why Minis May Work

It's been clear for many years that cancer cells often remain in a patient's body following high-dose chemotherapy and a stem cell transplant. Scientists now know that the donor's white blood cells play a critical role in destroying cancer cells that remain after transplant. This phenomenon is called the graft-versus-leukemia or graft-versus-tumor effect, and appears to be most powerful in diseases that progress slowly, such as chronic myelogenous leukemia (CML), low-grade lymphoma, chronic lymphocytic leukemia (CLL) and multiple myeloma. The disease-killing capability of the donor's white blood cells is so potent, that some patients who relapse after transplant can be put back into remission, simply by infusing them with more of the donor's white blood cells-a procedure called donor leukocyte infusion.

Thursday, April 11, 2002 at 08:43 PM (CDT)

GETTING READY FOR MINI MUD TRANSPLANT—TESTS

On Thursday, March 11th I went to Hopkins in Baltimore for all the pre-tests. The reason I am going to Boston’s Dana Farber for the transplant itself, instead of Hopkins, is that Hopkins does not do this type of transplant with an unrelated donor—only related donors.

Going through all the tests was a real ‘been there, done that, and didn’t like it’ experience since I went through all these tests about 15 months ago in preparation for my last transplant. At least I knew what to expect. I got gallons of blood drawn for testing, a CT Scan, a bone marrow biopsy and EKG/Pulmonary and heart
function tests. All of this is to ensure that I am healthy enough to go ahead with transplant. Hopefully my treatment of Rituxan in January/February put me in remission
again as ideally you want to go into this procedure with as little disease as possible.

Just returned from Hopkins and things went fine. Due to past bad experiences with bone marrow biopsy, I usually ask for lots of drugs! This time however, because they have a new protocol that says you canÂ’t eat for 8 hours prior to receiving the drugs, and they
never told me this, had to go, as Kim put it, with the ‘natural child birth’ approach. Actually it was not that bad since the Nurse Practitioner was very experienced and did a great job. For those that have never had a bone marrow biopsy, it is when they go into the bone in your lower backbone to get a sample of the marrow to determine extent of disease located there. While they do try to numb the area, can’t totally numb inside the bone. I always feel like a cork as the corkscrew is working it’s way in. There’s some pain going in and then due to the pressure, some pain coming out when the cork pops (like a really bad muscle spasm). It really isn’t quite as bad as it sounds. Pain only is for 10-20 seconds and I think the anticipation and anxiety around it is worse than the actual procedure—right up there with a root canal!!

WonÂ’t have the results of the marrow biopsy for a couple of days. CT scans showed some improvement in chest nodes but things about the same in the abdomen/pelvic area so the nasties are still floating around and the 12 doses of Rituxan did not put me in remission as hoped. At least things have been kept under control and things havenÂ’t worsened.

Friday, April 12, 2002 at 06:44 PM (CDT)

TRANSPLANT DATE CONFIRMED FOR MAY 1st.

Well finally moving along in preparation for transplant. Just got word that it is now official. Donor is available and check-in for me at Brigham and Women’s Hospital (Dana Farber Cancer Institute) in Boston will be 5/1/02. I’ll go through 5 days of treatment while in the hospital (Fludarabine and Bulsufan), then 2 days ‘off’ and then will receive my new stem cells, compliments of the anonymous donor found through the National Marrow Donor Program. I’ll be in the hospital for about 10 days and in outpatient in Boston area for about 10 days assuming all goes well. Then we’ll return home to Virginia and be doing the I-95 shuffle to Baltimore a couple of times a week to be followed closely at Johns Hopkins post-transplant.

April 19, 2002

GETTING READY FOR THE TRANSPLANT

Not much new to report. I did get the results of other tests and nothing major to report. The marrow biopsy showed about 5-10% lymphocytes which is up from about 3% in January. It is still relatively low but again would have hoped for more 'clean up' after all the Rituxan treatment in January/February. This should not have an impact on Transplant and still shooting for a May 1st date.
Meantime we are trying to get the house ready for our return after transplant. We've had a parade of workers coming in to help us 'sanitize' the house which is required due to my compromised immune system post transplant. All nasty bugs, mold, bacteria have to be nuked. This includes washing all carpets, wiping down all walls and woodwork with bleach solution, vacuuming all upholstery and curtains, cleaning out all heating/AC ducts, etc. Kim has been incredible in handling all of this!
Yesterday, I had to talk with a social worker from Dana Farber as part of their pre-admission procedures--guess they want to know if I am sane enough to go through all this.

I went through all of this 15 months ago, and I certainly knew what to expect and what I am getting myself into. Bottom line is 'do I want to do this.....no', 'do I have any other options.....not really'.
Not sure what they would have done if I came across as a raving lunatic (please, no comments from my friends in the peanut gallery!!)

We will be driving from Virginia to Boston and will be bringing our two daughters with us after debating that issue back and forth. Schools have been very flexible and they will be putting together packages of work that they can do in Boston---teacher will be one more job added to Kim's long list of duties. We have found a hotel right next to the hospital that has a couple of 1 and 2 bedroom apartments and more importantly for the kids, a food court with a Mcdonalds in the lobby!!
Our plans are to leave Saturday, April 27th and stop in Connecticut to see my family for a couple of days before heading to Boston. Looking forward to that before the real 'fun' begins.

Monday, April 29, 2002 at 02:26 PM (CDT)

ARRIVAL IN BOSTON--ORIENTATION

We arrived in Boston last night after spending a nice weekend in Connecticut visiting my family. The kids got to see and play with their cousins, we watched my nephew's (age 10) baseball game (and his first time pitching), had a great barbecue feast at my sister's house , and visited with my sister, brother and father. It was a short stay but broke up the trip nicely.

It is only about 3 hours from Connecticut to Boston and we arrived here last night. We are staying in a one bedroom apartment run by the Best Western literally right next door to the Dana Farber Cancer Instititute where I'll be doing all out-patient activities, and only a block to Brigham and Women's Hospital where I'll be in-patient for about a week.

Monday morning I spent several hours at Dana Farber. Had about 30 more vials of blood drawn for god knows what reasons but I am so used to it now that I'm not sure what I'd do without getting stuck with a needle a few times a week. I then met with Dr. Gribben, Katey Stephans (his nurse practitioner) and Toni Dubeau, a Transplant nurse. All were super,...extremely knowledgeable but able to explain things in a very easy to understand and straightforward way. They demonstrated a lot of caring and helped to give me more confidence that I am doing the right thing by going ahead with the transplant. Kim and I felt really good after the meetings and felt we were in great hands with this team...and that makes all the difference in the world. They all seemed really pleased that I looked and felt good and was coming into this procedure relatively healthy and strong. They inferred that too many times patients wait until they are extremely sick and then the whole transplant process becomes much more difficult. This I think is the toughest part of this whole thing---deciding if and when it is time to go for the more radical treatments but not wait until it might be too late.

It is strange but after getting my CT Scan and Marrow test results last week, which showed basically no improvement and a bit of worsening in the marrow, I was kind of relieved. If, after receiving the heavy Rituxan treatment, I went into remission, it would probably have been more difficult to convince myself that I was doing the right thing. I am now convinced more than ever that this is my only viable option .... and it might even produce a cure....weird how the mind (or at least my mind) works. Bottom line is that my disease is becoming less responsive to treatment and even when responsive in the past, remissions have been very short-lived.....Doctor Gribben seemed to agree with this .....so, full steam ahead with the transplant!

I left Dana Farber at 2:00 p.m. with a plan to get a platelet Transfusion on Wednesday morning, then have my hickman catheter line surgically inplanted which will be used to tranfuse blood products, administer medication and receive my donor's stem cells. I will be admitted to the hospital immediately after the Hickman procedure and then on Thursday will start my Chemo treatments of Fludarabine and Bulsufan for 4 days. Then 2 days off and then will receive my stem cells.

Kim, the kids and I decided to use our 1 1/2 days of freedom to see the sights and do the things I won't be able to do for at least six months since I have to avoid all crowds during that time period. We went down to the Aquarium, saw an IMAX 3D movie about underwater life, had a lobster feast at Legal Seafood and came back to hotel to collapse.

Tuesday, April 30, 2002

PLAYING TOURIST AND THEN NEWS OF SHORT DELAY

A free day and another day of playing total tourists here in beautiful Boston. Took a Trolley tour that allows you to get on and off for the day. Took a boat tour of the harbor, walked and had lunch at Faneuil Hall and got to see pretty much all of Boston. I lived here about 25 years ago for about 2 years but forgot what a great city this is.

We returned from our day's outing with a message to page Katey Stephans. I called and found out that apparently my donor had a family emergency and everything needs to get delayed for 2 days. It was a bit of a let down since I was getting myself psyched to get this whole thing going after waiting for months.....but what is two days in the big scheme of things.... and it gives me 2 more days to play in Boston. I'm just hoping that everything is o.k. and that my donor isn't going to back out...Katey assured me that was not the case but all sorts of things can go through your mind. It is a kind of strange feeling to realize that your entire future and life is in the hands of this complete stranger!

Saturday, May 04, 2002 at 11:03 AM (CDT)—Day -7

ADMISSION DAY

All is now back on schedule. Yesterday, I arrived at DFCI to get a platelet transfusion and then went over to the hospital to have a Hickman catheter put into my chest. This is a line that is surgically implanted and leads directly to the heart. It makes it easy to take blood, tranfuse blood products as needed, administer Chemo and other drugs and will be used to receive the donor stem cells. It is pretty bizarre to have this tubing sticking out of your chest but since I had it for the Auto transplant a year ago, I am pretty used to it. Everything went fine except they needed to give me 2 extra bags of platelets to get them up to a level (50,000) that would minimize any bleeding problems. This caused several hours of delay and worst part was that we didn't finish up until about 5:00 p.m. Because I wasn't allowed to drink or eat anything for entire day , was feeling pretty lousy from all the medication given on an empty stomach and also was having mega caffeine withdrawal!! Anyway, got up to the room, got some food and coffee and all was fine.
Once all the numbing medication wore off, pretty painful but lots of good painkillers to take care of that.

As expected, a flood of doctors, nurses, nutritionists etc. in and out of the room all night and this morning. All seem very nice. Because of the type of transplant, and major risks of infection, the rules are much stricter here than when I had the auto transplant at Hopkins. I basically can't leave the room without wearing gloves and a mask, and even then, have to stay very close to the room. Any visitors have to also wear mask and gloves when in my room. It will be tough on the kids but as always, they have been real troopers.

Now, just waiting for my first of 4 chemo treatments of Fludarabine and Bulsufan. . Purpose of this chemo is not to treat the disease as much as it is to prepare for the donor stem cells. I'm told the side effects won't be that bad since relatively low doses are given......of course there is always the big.. 'BUT, everyone has different reactions'. The fact sheets give a long list of side effects but I've learned from experience to ignore this since they have to list every possible thing. Since I have typically tolerated chemo pretty well, I'm hoping for smooth sailing. Guess I'll find out shortly as nurse just came in to let me know that they'll be coming in a minute to start everything.

Sunday,May 05,2002 at 8:30 PM (CDT)-Day -6

2 TREATMENTS DOWN/ 2 TO GO

Just a quick update as not much to report. I have had two doses of chemo (Fludarabine and Busulfan)and no problems. I am also taking several antibiotics and anti viral medicines to prevent infections (Acyclovir and Bactrim). Right now just battling the boredom more than anything else...but guess I can't complain. Kim and the kids are in and out during the day, between shopping sprees and playing tourists in Boston. This is going to be an expensive stay!!
Tomorrow they are going to move to the Doubletree Suites near Cambridge. We checked it out before I came into the hospital and decided it would be nicer than the Best Western. Although the suite is a bit smaller, the hotel is right on the Charles River with walking paths and parks nearby so will be much better when I'm out of the hospital---I have to avoid crowds inside but no problem going outside if I'm feeling o.k. So I won't be as trapped in the room as I would if we stayed next to the Hospital. It also has shuttle service to downtown Boston and Cambridge plus an indoor pool and Fitness center for Kim and the kids.
It should work out well.

Two more days of chemo, then two days off followed by the big day when I receive the donor stem cells, though even that is a non-event---just like 30-45 minute blood transfusion and boom...transplant is over. The real challenge comes in the months ahead while closely monitoring and managing the many possible side effects from the transplant.

May 8, 2002—Day -3

CHEMO FINISHED—OFF DAYS

Really nothing new to report from last entry--handling the Chemo treatments fine and today and tomorrow are 'off' days. The best part of that is for now I am off all IVs and can actually walk around my small room without wrestling with the IV pole and electric cord. Also can walk around the 'pod' I am on which is very small, but at least gets me out of the room (with mask and gloves).. Actually can now see what the doctors and nurses really look like since I only see them with masks on when in the room.

I'll be getting my donor stem cells either Friday or Saturday and then should be released to out-patient. Kim and the kids are really happy with the move to Doubletree Guest Suites-in Cambridge--kids enjoying the pool and other amenities and Kim is more comfortable there too. I can't wait to get over there and be able to walk around outside by the River, and generally get a change of scenery. Who knows, maybe I can even hitch a ride on one of the many sailboats cruising up and down the river. In any case, sure hope the nice weather here holds up next week since the only fever I am fighting right now is mega Cabin Fever!

Drugs= Acyclovir, Bactrim, Levaquan, Vitamin E, multivitamin,
Blood Counts=
WBC=1.35
RBC=2.98
HGB=10.0
HCT= 28.7
PLT= 28

May 13, 2002 (Day +2 Post Transplant)

THE TRANSPLANT NON-EVENT AND HOSPITAL DISCHARGE

So after a pretty uneventful week, my donor stem cells arrived and were transfused at about 10 p.m. on Saturday, May 11,2002 which is now considered my new birthdate. I actually unofficially have 3 birthdays now ---my real birthday in January, my autologous transplant date in December and now my mini-allo transplant date in May.
Again the actual transplant was as expected, and very similar to the autologous transplant--- a very anticlimactic event entailing a 45 minute transfusion with close monitoring to be sure I didn't have a bad reaction. Everything went fine. Sunday they loaded me up with two bags of blood handed me an armful of prescriptions to fill and then cut me loose which wasn't a minute too soon---I was really climbing the walls waiting to get out of there. It's great to be at the hotel which is working out well. We have a beautiful view of the Charles River with crew boats going up and down the river all day long. Unfortunately it's pouring rain today but hope to get out to take some long walks when it clears up--in the meantime I'll just have to make due with circling the hotel hallways to get my exercise.

One thing different from an autologous transplant is that I am on some heavy duty immunosuppressive drugs to help the donor cells engraft. This along with low blood counts and a disease (SLL/CLL) that itself lowers your immune system, gives me significant risk of picking up infections. Due to this risk of infection, I am on a strict (neutropenic) diet to minimize picking up any stray bacteria--no fresh fruits or vegetable, no fresh bakery goods, no cold cuts from the deli section, no food from restaurants etc etc. This will be for the 1st 100 days or so. Then they loosen things up a bit. I also have to wear a mask and gloves whenever I go out in public where there are crowds so probably won't be off to any wild rock concerts in the near future.

Today I spent most of the morning in the clinic at Dana Farber where they checked my blood levels, and gave me a shot of neupogen to boost my white counts. Starting tomorrow, I'll be giving myself these shots. But all in all, doctor seems very pleased with my progress so far.
The hardest part of this whole process is that unlike surgeries or other medical procedures, with a stem cell transplant they can't really tell you anything after it's complete. Now it will be a year of fighting off infections, monitoring blood counts, minimizing any graft vs host disease (when donor cells decide to attack not only the cancer cells but other parts of the body too) and waiting to see if in fact my cancer stays in remission......but nonetheless, I know I've done everything I can to treat this disease and am optimistic that this treatment will beat the beast

Friday, May 17, 2002 (Day +6)

DANA FARBER CLINIC MONITORING POST TRANSPLANT

Not much new to report. I've been going to the clinic virtually every day this week where they check my blood counts and load me up with a new supply of blood products as needed. My platelets continue to be low (15-20,000) so I have had to have 2 platelet transfusions so far this week. Nothing out of the ordinary though and docs still seem very pleased with progress. I am taking about 20 pills per day so it's a bit rough on the stomach but still tolerable. Our challenge at the hotel is figuring out things I can eat since I can't have any restaurant food and we have only a small refrigerator and small microwave. This is going to be a real problem since tomoorrow I start on Prednisone, a steroid that causes huge appetitie increase not to mention a lot of unpleasant moodiness which Kim is not at all looking forward to.... and in a tiny hotel room things could get a bit hairy. But...Kim and the kids have been super---never a complaint about anything and this is all as rough on them as it is on me.

Not sure how long I'll need to be in Boston. Once my blood counts start to climb that is a sign that engraftment of the donor stem cells is taking place and then they'll probably let me go home to be followed closely at Johns Hopkins. I am hoping to be out of here by end of next week but there is no way of knowing at this point.

For those into the technical medical stuff:

CURRENT BLOOD COUNTS

WBC=1.2 (norm is 4.1-10.9)
RBC=3.19 (norm is 4.2-6.3)
HGB= 10.4 (norm is 12-18)
HCT= 29.5 (norm is 37-51)
Platelets= 20 (norm is 140-440)

CURENT MEDICATIONS

--Cyclosporine, Cellcept,Prednisone (immunosuppressive drugs)

--G-CSF (daily shot to help boost white blood counts

--Levaquan, Acyclovir (antibiotics to help prevent infections)

--Pentamadine inhalation monthly (prevents certain pneumonias)

--Folate, Magnesium, Vitamin E, Multivitamin

--Peridex, Mycelex (mouth-care to help prevent infections in mouth)

(So much for "JUST SAY NO" to Drugs!)!)

Tuesday, May 21, 2002 (Day +10 Post Transplation)

CLINIC DAYS— BLOOD COUNT ROLLERCOASTER

Well things are bouncing along. Yesterday, after having 3 days off without having to go into the clinic, my platelets had dropped to 9,000 so the cocktail of the day was 2 bags of pineapple and rum (Platelets are a watery pineapple color). Today my Reds (RBC) had dropped to 2.74, with HCT at 25.8 so today's cocktail was 2 bags of good old fashioned Bloody Marys. Seriously though, as you can see, I am needing lots of blood products as do many people being treated for cancer. I always think about the donors of these products while being infused and wish I could personally thank them for taking the time to donate blood and platelets... I only wish I could donate but of course, no one would want to come near my blood!! Please think about donating blood products if you are able--you will be literally saving people's lives.

Today after the platelet transfusion, they jumped from the 9,000 to 36,000 which is a good spike for me as I have had platelet problems for last 8 months. Also, today the good news was that my Whites (WBCs) had jumped from 3300 to 8500 in one day. About half of this can be attributed to the daily GCSF shots I am getting to boost the WBCs but still it's great progress, and a good sign that engraftment of the donor cells is starting to take place. Last night was a tough night as I couldn't sleep and had bad pains in my lower back. This is one of the side effects of G-CSF and as my nurse Katie explained to me today, there is a lot of marrow down there and it was hammering away hard to produce all those whites. So actually it was a good sign that I was feeling some pain---no pain, no gain I guess! They decided to take me off the G-CSF to see how I do without it so I'll know more on Thursday.

Tomorrow I have the day off so if I'm feeling o.k. we plan to take the kids for a short road trip to Salem to play with the witches and goblins. While I won't be able to go into any of the museums without a mask, that's o.k. I'll probably just hang out outside and get some fresh air after being cooped up at the clinic for the last 2 days.


Thursday, May 23, 2002 (Day + 12)

CRUISING ALONG FINE

Everything continues to go well. Went into the clinic today and everything is looking great...for once, didn 't need any transfusions so was a relatively quick visit. Platelets have held their own (32,000), WBC's are at 15.6 despite being off the G-csf booster for 3 days, and RBCs at 3.46. Doctor real pleased but wants me to hang out in Boston until next Tuesday and if everything is o.k., he'll let me leave Boston on Tuesday, 5/28. I'll need to get periodic check-ups at the clinic at Johns Hopkins and come back to Boston at day + 30 for a Bone Marrow Biopsy, when they determine how much engraftment of the donor stem cells has taken place.

Yesterday and today were beautiful days in Boston. We did go up to Salem yesterday and had a nice time. Went through the Witch Museum and Pirate's museum....good diversion for the kids. We also had a nice lunch outside overlooking the water...of course I couldn't eat or drink anything from restaurant but it was so nice to be outside and by the water...where I'm always at my best! This afternoon after my clinic visit we went down to the community boat dock to rent a sailboat on the Charles River. However, despite my past sailing experience, it was a bit of a hassle to get certified for renting so decided to pass and just walked around the parks.

What a difference having this transplant during this time of year. I had my autologous transplant in December, 2000 so was trapped in my house for months. Now, while I can't be with people inside, I can at least go outside without a mask and without worrying much about infections...lots more options and while I'm feeling well, hope to take advantage of it to the max.

Saturday, May 25,2002 (DAY +14)

FREE TIME--JUST HANGING

As mentioned below,won't have any medical updates until after Tuesday's appointment when I'm hoping that my counts are holding steady and I'll be allowed to go home. So Kim and I are just hanging out for the weekend.
My daughters(age 10 and 14) left Boston today to go down to Connecticut so they could have some fun time with their cousins at my sister's house. I know they were ambivalent about leaving but they really needed to get out of this hotel room for a few days and be able to relax, have some fun, run around outside and just be kids again. They have been unbelievably flexible, patient and supportive during all of this and I think this ordeal has only made them stronger and our family tighter. I am so lucky to have this kind of support. We plan to pick them up on the way back to Virginia (hopefully on Tuesday)

Wednesday, May 29, 2002 (DAY + 18)

HOMEWARD BOUND--ENGRAFTMENT!!, DISCHARGE AND NEXT STEPS

Well we are finally back home in Virginia and what a great feeling. After spending a month in a small hospital room, hotel room with 4 people, and days sitting in the infusion room at the clinic, it's great to have some space and be in own surroundings.
Spent the long weekend anticipating the outcome of Tuesday's test but was so optimistic that we packed the car Tuesday morning, checked out of the hotel and headed to the clinic (If not released, we'd just deal with it then). News was great. My blood counts were very good after a week of no infusions (counts shown below). BIG NEWS was that my platelets jumped from 32,000 to 111,000!!! This was an amazing feeling. I have been fighting low platelets for almost a year with all sorts of treatments--none of which worked... then to see them miraculously triple in a few days was
when I finally realized the power of getting the donor's cells. This proved that engraftment is taking place and my feeble system is starting to be taken over by a stronger and healthier one. So with that good news, we left the clinic at 1 p.m., drove to Connecticut to pick up my daughters, spent an hour
visiting with family and continued on to Virginia arriving around midnight last night.

I am feeling very good (admittedly partially drug induced due to the high dose of steroids I am on!!). I am told that I will actually probably start to feel more fatiqued along with other side effects after Day +30 or so and I'm
certainly not out of the woods. The problem with feeling good is that you feel that you can just go back to living a normal life.. But I can't because I am still at huge risk of infections due to the many drugs I am taking to severely suppress my immune system and help the engraftment take place. So for the next 100 days or so I can not go into public without masks or gloves, and have to be extremely careful of picking up any kind of infections. I need to stay clear of all stores, fitness center, movies (when crowded), gardening. Food restrictions also continue (no baked goods, no restaurants/takeout, no deli meats unless pre-packaged, no bottled water,no uncooked/raw fruits and vegetables, no outdoor grilling, etc. etc. The thing I feel bad about is that my daughters won't really be able to have friends over though if they stayed in our finished basement we'd probably be o.k. and at least weather nice to be outside--but obviously rough on them especially with summer coming up.

So I'll now be going to Hopkins in Baltimore for weekly check ups and back to Boston in 2 weeks for a bone marrow biopsy to determine how engraftment is proceeding. In terms of disease remission, probably won't know anything for 6-9 months but doctor very optimistic and again emphasized that he is convinced that I went ahead with this transplant at the right time when my disease was at a relatively stable state and is hopeful that disease will not start growing during this time period--if it does, there are things they can do but we'll cross that road if and when we need to.

MONITORING FOR GRAFT VS HOST DISEASE (GVHD)--THE BIG RISK FOR TRANSPLANTS

The big thing they will be looking at now, besides general infections, is evidence of Graft Vs Host Disease (GVHD) This is when the donor cells attack parts of body since it sees them as foreign. Actually you want a little bit of of GVHD because that is what triggers the Graft Vs Leukemia (GVL) effect of the transplant (Donor cells attack the cancer). The art of all this is to manage the many medications to stimulate just a little GVHD but keep it low grade and controllable. The following is an excerpt that explains GVHD for those into the technical nature of all of this.
*************************
Acute GVHD usually occurs during the first three months following an allogeneic BMT. T-cells present in the donor's bone marrow at the time of transplant identify the BMT patient as "non-self' and attack the patient's skin, liver, stomach, and/or intestines. The earliest sign of acute GVHD is often a skin rash that usually first appears on the patient's hands and feet. The rash may spread to other parts of the body and develop into a general redness similar to a sunburn, with peeling or blistering skin. Cramping, nausea, and watery or bloody diarrhea are signs of GVHD in the stomach or intestines. Jaundice (yellowing of the skin and eyes) indicates that acute GVHD has affected the liver.

Physicians grade the severity of acute GVHD according to the number of organs involved and the degree to which they're affected. Acute GVHD may be mild, moderate, severe or life-threatening.

To minimize the risk of graft rejection and GVHD, allogeneic BMT patients are given drugs to prevent GVHD before and after transplant that suppress the immune system. Use of these drugs, however, increases the risk of infection. Precautions taken to limit the patient's exposure to harmful bacteria, viruses and fungi during this period may include special air-filtering equipment in the patient's room, frequent hand- washing by visitors, use of masks, gloves and robes by the patient and/or visitors, and elimination of fresh fruits, flowers and vegetables from the patient's environment which may harbor potentially harmful bacteria. Patients over the age of 30 are more likely to develop acute GVHD than younger patients. Patients receiving marrow from a female donor who has had two or more viable pregnancies also are more likely to develop acute GVHD.

PREVENTION AND TREATMENT OF ACUTE GVHD

Although GVHD is not yet preventable, steps can be taken to reduce the incidence and severity of GVHD.

Administration of immunosuppressive drugs sudh as cydosporine (alone or in combination with steroids) and methotrexate prior to the transplant have proven effective in reducing the incidence and severity of GVHD. They may be administered for several months post-transplant, particularly if acute GVHD progresses to Stage II, or if the patient develops chronic GVHD.

Cyclosporine, steroids and methotrexate weaken the ability of the donor's T cells to launch an attadk against the patient's organs and tissues. These drugs, however, have potential side effects. Cyclosporine can be very toxic to the kidneys, cause increased hair growth on the body, especially facial hair on women, and on rare occasions can result in neurological problems such as seizures, confusion, anxiety, and changes in thought processes. Methotrexate may cause inflammation of the mouth, nose and/or throat. Side effects of steroids indude weight gain, fluid retention, elevated blood sugar level, mood swings and/or confused thinking. These side effects are temporary and disappear once use of these drugs is discontinued.

Source: http://www.bmtnews.org/bmt/bmt.book/toc.html
(Comprehensive on-line book about transplants)
******************************
A WORD OF THANKS

I want to thank everyone so much for their kind words of support and caring in E-mails and/or Guestbook entries. It really means a lot to know that people are out there rooting for you.
Also of course lots of thanks go out to the entire medical team at Dana Farber and Brigham Hospital in Boston. Dr. Gribben, his nurse practitioner Katey Stephans and all the staff are fantastic---what a great group both personally and professionally!!
And there are no words to adequately thank my anonymous donor. While we can't make personal contact for at least a year, we can send an 'anonymous' note through the Marrow donor center which we plan to do immediately.

NEXT UPDATE

I will probably start updating this journal less frequently (about once per week, after clinic visits).
*********************************
LAB RESULTS AT DISCHARGE

WBC-9.6
HCT-33.9
HGB-11.8
RBC-3.59
PLT-111
MCV-94.5
MCH-32.8'
MCHC-34.6
Lymph %-19
%mono-8
%poly-73

alymp-1.77
AMONS-.76
AEOSN-.01
Abasop-.01
(Neutrophils) ANC--7.05

NA-135
K3.7
CL100
CO2-25
BUN-20
CRE-1.2
GLU-121

CA-8.3
TBILI-.6
TP--5.8

***************************************

Monday, June 4, 2002 (Day + 21)

HOPKINS FOLLOWUP CLINIC VISIT

Today I went to the clinic at Johns Hopkins for follow up blood counts checks. Everything still going well. The white counts (WBCs) had gone up quite a bit (from 9600 to 19760) but the thinking is that this may be related to the medications. Just to be safe, had some blood cultures drawn to make sure there are no infections hiding out in my system (which could be reason for uplift in WBCs.) --will get results in a couple of days but really not worried about it—just a precaution. Apparently it is possible that I could get an infection without obvious signs like a fever since the medications I am on can mask some of the more obvious signs—first time I heard this since always told to just closely monitor temperature twice a day. I am glad that Hopkins is being overly cautious in testing for any potential problems.

I am really happy with the arrangement between Hopkins and Dana Farber. The Nurse practitioners (Amy Goodrich at Hopkins and Katey Stephans at Dana Farber) are extremely competent and they have a great working relationship. I know they will work well together in coordinating with the doctors any future care needs. Also, due to the fact that Hopkins has one of the leading Graft vs Host disease clinics in the country, this will be an added benefit if/when I face that down the road.

I am actually feeling better than I have felt in a long time—no sinus infections or colds, no hacking coughs, no swollen lymph nodes, lots of energy, and optimistic that this treatment is going to work. The Prednisone (steroid) has me pretty wired and somewhat moody so I am not sleeping much at all—just an occasional cat nap and a couple of hours at night—but that’s o.k. since right now, I’m not working and don’t really have a fixed schedule to worry about. Also a special notice to all out there. This Prednisone is some funky stuff so if you happen to cross my path at a bad time of day, let me apologize up front if I come across a bit rude or crazy—also, some of these journal entries may seem a bit odd, rambling and/or non-cohesive so that too I’ll blame on the Prednisone . And finally if you see Kim or the kids at their wits end, blame it on my Prednisone. Actually let’s just blame all the ills of the world on this drug and be done with it!!!!

Spent the past weekend having some fun. Through a sailing club I belong to in Annapolis, we all went out for a short family sail on Saturday. Of course after being out on the water and catching the sailing bug, I went out again on Sunday alone since Kim and the girls had other plans. I took out a 35 foot J-105 and it was beautiful on the Chesapeake Bay when I shoved off at around 8:30 a.m. On the way back though, a front came through and I ended up getting caught in 35 knot winds and white cap water which was a bit hairy since I was alone. I managed it all fine (only lost one hat and one cockpit cushion overboard) and loved every minute of it. As I was driving home, it dawned on me that not once while on the water did I think about this disease or the treatments I am going through. What a fantastic feeling as this disease is one that tends to hang over your head 24 hours a day due to all of the uncertainties associated with treatments, side effects, lab results, medications, prognosis, relapse probablility etc. I try not to let it get all consuming but that is easier said than done….. So, during the sail, it was great to be focusing on something different than all these internal health issues —instead was focusing on battling the external elements of wind and waves, and getting safely from Point A in the middle of the Bay to Point B at the dock—back to the simple things.

I paid a bit of a price today for all this activity over the weekend as I was a little sore and really exhausted all day so will take it easy for a couple of days. Nevertheless. I plan to try do a lot of sailing this summer if I am feeling up to it since it is one of the few activities that I donÂ’t have to worry about from a risk standpoint and one that I enjoy more than anything else---i.e; since outside and not around other people, no real worries of picking up infections. I do need to be careful in the sun though so I am glopping on lots of SPF 45 sun protection and wearing funny looking hats to protect me!

NEXT UPDATE: I go back to Hopkins clinic on June 10th and then back to Boston for the Bone Marrow Biopsy on June 13th . Unless any surprises this week wonÂ’t be updating again until next week.

BLOOD COUNTS

*WBC= 19760
HGB= 11.2
HCT= 32.3
MCV=97.0
MCH-33.6
MCHC= 34.7
RDW= 17.9
Plts= 113
Lym%=1
ABLYM= 198
ANEUT= 18970

******************************
Friday, June 14, 2002 (Day +34)

All Goes Well!

Everything still on course and going very well. Had my weekly Blood count check at Hopkins on Monday and then on Thursday flew up to Dana Farber in Boston to have day +30 check and get a bone marrow biopsy. I wonÂ’t have results of biopsy for a week or two at which time IÂ’ll know the current status of the disease (i.e., amount of cancer still in the marrow) and they will also determine level of donor engraftment.

My blood counts are great and after about a year of platelets in the 20-30K range, I am now actually in the normal zone with platelets at over 200K!!! On Monday, at Day + 30 they reduced my prednisone steroid from 90mg to 70 mg and will continue to slowly reduce in the weeks ahead. This means that Graft vs Host Disease will probably show itÂ’s face which is a good thing since that is what also triggers the Graft vs Leukemia/Lymphoma when the donor cells attack the cancer. In fact, at Dana Farber, they did detect a slight rash on my chest which they thought may be some early stage GVHD so will be monitoring that closely. Basically they will adjust the Prednisone up or down as needed to keep the GVHD under control. IÂ’ll continue to go for weekly checks at Johns Hopkins in Baltimore and then at Day +90 (August 11,2002) IÂ’ll go back to Boston for more tests to include CT Scans and another Bone Marrow Biopsy.

I am feeling great and my only problem is that when you are feeling good and full of energy, it is difficult to follow all the strict rules on diet and infection-free living (i.e., no going into public places without mask etc). But I am being very careful and not taking any chances. On my trip to Boston, it certainly was a lot of fun spending the day in and out of airports and airplanes with my mask and gloves on, and watching all the staring eyes—Interestingly, I had no problem with anyone at Security—I guess I looked so obviously strange and attracted so much attention, that there was no way I could be a terrorist!

Next Update: Will post an update after I get results of Bone Marrow Biopsy—around 6/20/02.
********************************

BLOOD COUNT RESULTS (6/13/02)

WBC=6.8
HCT= 37.6
HGB=12.9
RBC=3.75
PLT= 218
MCV= 100.1
MCH=34.5
% Lymph= 7
% Mono= 8
% EOS=1
% POLYM= 79
% BAND-M=5
ALYMPH= .48
AMONS= .54
AEOSN=.07
ANEUT=-M=.34
NA=133
K=4.4
CL=100
CO2=22
BUN=20
CRE=1.1
GLU=136
ALT/SGPT=22
AST/SGOT=20
ALKP=82
TBILI=.7

Saturday, June 22, 2001

Just a very quick update as my results still arenÂ’t all in from Bone Marrow Biopsy done in Boston on 6/13/02. My marrow does have 20-30% disease which is an increase from the April results, just prior to transplant but after the Rituxan treatment. This means thing have worsened a bit but doctor not too alarmed. We shouldnÂ’t expect to see any results from the transplant for a couple of months so disease will take itÂ’s normal course in the meantime, and the Rituxan treatment probably wearing off now. The results I am waiting for will show how much engraftment has taken place (i.e., percent of donor versus my cells).

Had a checkup at Hopkins on 6/20/02 and they don’t think the slight rash I had was graft vs host disease (GVHD) so they have lowered my steroid (Prednisone) dose from 70 to 50 mg which may trigger the GVHD --- hopefully in it’s mildest form. I am also hoping that the steroid reduction will help with my sleeping problems since I am basically going on about 2 hours sleep a day. Everything else looking o.k. though my WBC (white counts) dropped to about 2000 which is kind of low and I am suffering from a bladder infection that is not serious but a bit painful and basically not a lot of fun! But again, all of this is pretty ‘normal’ stuff to be expected so I am not concerned.

Next update: After next Hopkins checkup scheduled for 6/28/02.



Sunday, June 30, 2002 (DAY +50 Post-transplant)

MEDICAL UPDATE

All seems to be back on track. I went to Hopkins on Friday and white counts up to 3000 (they had dropped to 2000 week before). Platelets down some (to 144,000) but still in normal range and these swings in blood counts are to be expected. My bladder infection seems to have finally cleared up after a very uncomfortable week---all the tests for bacteria and viruses came back negative so not sure what caused it but oh well, at least for now itÂ’s gone. TheyÂ’ve dropped my Prednisone another 10mg to 40mg. This they tell me is the level when GVHD may show itÂ’s ugly head so IÂ’m looking out closely for any signs (e.g., rashes). The drop in Prenisone has definitely impacted my energy level. I seem to get sudden waves of severe fatigue at different parts of the day and definitely not as wired as I was....also, seem to be able to sleep a bit better at night now which is a relief though you will still find me on the computer at 3 a.m. on occasion due to inability to sleep.

At Hopkins I met Dr. Vogelsang and her GVHD team so I would know them if/when needed. This is a group of Doctors from different specialties (dermatology, respiratory, etc) that work together to treat GVHD. Dr. Vogelsang is known as a real specialist in this field and people come from all over to consult with her. So if and when I face any problems, I couldnÂ’t be in better hands.

Good news on Engraftment! Results came back from Bone Marrow Biopsy and my stem cells are now 87% Donor cells which is the result we were hoping for, though given my improvement in platelets, knew that engraftment was taking place. Still good to have the confirmation!

NEXT UPDATE: After next Hopkins visit---around 7/9/02

Tuesday, July 8, 2002 (DAY +59 Post-transplant)

Went to Hopkins yesterday for routine weekly check-up and tests and as my nurse practioner Amy Goodrich says, I continue to be a 'very boring' patient which of course is good. All counts are within normal range and seem to be levelling off. No other problems and reducing prednisone another 10 mg to 30.
So all is well. Now it's just a matter of waiting for the GVHD to appear which is an inevitability, especially with unrelated donor. As I keep saying, just hope it is a mild case and we can keep it under control.

Starting to think about going back to work (at least from home) after my 100 day check-up at Dana Farber in mid-August. In the meantime, keeping very busy with various projects and a lot of volunteer work with the Leukemia and Lymphoma Society.

NEXT UPDATE: After next Hopkins visit---around 7/16/02

July 27, 2002 (Day + 77)

Sorry IÂ’ve been negligent in updating this journal but not a lot to report. Basically everything still going as expected with a few bumps in the road, just to keep things interesting. One of the immunosuppressive drugs I am taking is Cyclosporine. Every week they check my blood level with a goal of maintaining about 300 level in blood. Last week it shot up to over 1000 which is a very toxic level and doctors a bit baffled as to why this happened. They think that it is probably due to the fact that a few weeks before, I switched from a brand name (SandImmune) to a generic form. Any way was feeling pretty miserable and they now have cut back my dosage and things seem to under control. I am still not feeling great (mild flu-like symptoms,low grade fever, alot of fatigue) but think this is due to the tapering of the prednisone along with getting this cyclosporine back on track.

All the other blood levels are fine and again, doctorÂ’s overall pleased with progress---still no GVHD but that will come in time.

We managed to escape to Virginia beach for some R&R which was a great break. I couldnÂ’t do too much as I have to avoid the sun and heat plus wasnÂ’t feeling great but the kids had a good time splashing around the pool and body boarding in the surf.

Next major news will come after my visit to Boston on August 20th (day 100 check) where they will do a CT scan and Bone marrow biopsy to get a clearer sense of status of the disease and status of donor engraftment. IÂ’ll report back as soon as all the test results are in.

August 16, 2002 (Day 97 post transplant)

The last few weeks havenÂ’t been the greatest but IÂ’ll preface all this by saying the Doctors still think IÂ’m making great progress---hopefully they are not just trying to be overly optimistic with me but donÂ’t think thatÂ’s the case.
Any way, for the last several weeks have been very weak and tired all the time—don’t really have the energy to do much of anything. I’ve also been having very bad sinus infections and low grade fevers. When I had blood level checked a couple of weeks ago, found that my immunoglobulin level was extremely low, as it was prior to transplant. This is another measure of the strength of the immune system so this just is one more thing that puts me at an even higher risk of infection. So this week I started IVIG treatments at Hopkins (3 day /10 hour infusions) and will need to have them monthly. Similar to last December, on the first day of treatment, I had a severe reaction (shaking chills and trouble breathing) but they were able to give me some extra medication that helped and I was fine the next 2 days. My daughters were in the room with me and I think it scared them to see this---I hate them having to go through all this with me but they’ve been great.

Just to add icing to the cake, for some reason my white blood counts and neutrophil levels had dropped to very low levels too—one more thing putting me at risk of infection. I am now taking neupogen shots daily to help boost this white count level. Unfortunately I’m very sensitive to this medication and it is causing severe back/leg pain which is a common side effect.

So all and all, I not the happiest of campers right now but I know that this too shall pass. This must be the post transplant phase where the ‘no pain/no gain’ credo keeps you moving forward.

IÂ’m off to BostonÂ’s Dana Farber on August 20th to get my CT Scan and Bone marrow biopsy check so may know more after that.

CURRENT BLOOD COUNTS

WBC=2.3 (Norm= 4.1-10.9)
RBC=3.3 (Norm= 4.20-6.30)
HGB= 11.6 (Norm= 12.0-18.0)
HCT= 32.1 (Norm= 37.0-51.0)
PLT= 171000 (Norm= 140-440)
Neutrophil=70 (Norm= 1500-7800)
Lymph= 3040 (Norm = 1100-4800)



Friday August 30, 2002 (Day )

First the good news.....my 100 day tests to include CT scan and bone marrow biopsy were positive in that the amount of cancer continues to go down (currently about 10 % in marrow, and smaller nodes in chest and pelvic area than prior tests pre-transplant.
The bad news is that the 'mild' Graft vs Host Disease we were hoping for ended up rearing it's ugly head in a pretty severe way. I've been in the hospital since last Tuesday at Hopkins in Baltimore as they try to battle it. Currently have Stage 2-3 Graft vs Host disease (GVH) in mouth and on skin and severe GVH in the gut. I'll probably be here at least another week. Treatment is a protocol that includes extremely high doses of steroids given intravenously (e.g., first 2 doses were 1000mg versus the 90 I was on immediately following the transplant.) I will also be getting weekly IV of Zenapak for 24 weeks. The skin is already starting to clear up a bit but Gut will apparently be slow going. No food allowed for now and I will be getting nutrition intravenously. Just to add to the fun, have to have the Hickman put back in chest for the feeding and for all the blood draws and intravenous drugs I'll need to take down the road. Once again, I am at huge risk of picking up other infections due to my overall immunosuppressed system....especially with the huge doses of steroids being given. Feels kind of like I am starting all over again. This disease is so maddening as it is all the side effects and dangers of treatment that cause the biggest risk. It's sometimes difficult to remember the end game of curing the cancer when you are constantly focused and fighting these other potentialities.
. Fortunately I am at a great hospital with a lot of expertise in GVHD and I continue to remain as optimistic as possible though there are moments when it gets pretty toughSunday September 8, 2002 (Day 120)


Sunday,September 8, 2002

Looks like I'll finally get sprung from hospital tomorrow. Feeling better and the GVH in the skin and gut have improved. Been on very high dose IV steroids, slowly being tapered, and not allowed to eat anything for about a week (all nutrients given intravenously). I'll need to continue the IV feeding when I go home so I'll be carrying around a pump to get the juices in--fun stuff. Slowly they'll let me try small amounts of liquid and work up to eating in the weeks ahead---idea is to 'rest the gut' and let the GI tract heal. Will be coming back to Hopkins as outpatient 1-2 days a week and will also continue on the Zenapax for 24 weeks (IV once per week). Dr. Gribben in Boston is fully informed and agrees with plan. Basically now have 3 groups I'm dealing with ---Hopkins Oncologist (Flinn), Hopkins GVH team (Vogelsang) and Boston team (Gribben). It's a bit confusing but they all seem to be coordinating without a problem and I get the benefit of 3 expert opinions as issues arise.
Feeling pretty good ----just nervous about what will happen when steroids are tapered (ie, will GVH get worse) and about picking up an infection.....but again docs pleased with results so far so that's a good sign.
All for now.

Sunday, September 15, 2002 (Day post transplant)

ItÂ’s been great being home again after 2 weeks in the hospital. Things are rolling along slowly. I continue on 24 hour TPN (Intravenous feeding) with a portable pump I have to carry around with me. I am slowly trying small amounts of food (jello, juice, Italian ice, rice, noodles) and it seems to be working o.k. IÂ’ll continue on the TPN for a while but next week they may cut it back to 18 or 12 hours which would be great because I could do it at night and be unhooked during the day.

Skin GVH seems to be better though nurse spotted possible new rashes which need to be monitored closely---if rashes resurface it basically means that I have failed this protocol and theyÂ’d need to try something else. Keep your fingers crossed.

Overall I’m not in any major discomfort but am extremely tired and weak and pretty shaky on my feet. One of the side effects of the mega steroids I am on is that it causes muscle deterioration. When I got home from the hospital, I could barely make it up the stairs—legs like rubber. So I’m trying to walk and exercise each day—apparently I won’t be able to build muscle while on the steroids but can slow down the deterioration.

Lots of unknowns as we battle this GVHD and have no idea what is around the corner so once again, itÂ’s just one day at a time.

Tuesday, September 30, 2002 (Day 143 post transplant)

Well it’s been a fairly uneventful week—Spending a lot of time at Hopkins getting tested and re-treated to get Graft vs Host Disease under control. The 1 ½ hour drive to Baltimore is really getting to Kim and me but at least we are grateful to have top notch facility so nearby.

I am feeling better but apparently still having trouble kicking this. Last week they did another skin biopsy and it showed that GVHD still there though a bit milder before. Before it was severe at grade 2/3---now it’s a ‘mild 2’. I had tapered down to 40 mg of prednisone and was looking forward to kicking it altogether…..BUT they now are worried that the GVHD will flare up again and they decided to go for another Super blast by raising steroids to 160 mg which is very high. I’ll taper to 120 after 4 days and will continue to go down from there---still like taking 1 step forward and 2 steps back. I seem to be getting close to lifting some of the restrictions around eating and going out and then have to start over again. Oh well what ya goin’ to do.

I am having a lot of trouble with Glucose levels which is related to all the steroids and the intravenous feeding. I am however starting to eat a lot more, and having fewer stomach problems-- today I got a call to stop the IV feeding now and just try regular food.. Great news since carrying around this bag everywhere has been a real pain. I have to check my insulin level at home 3 times a day and give myself insulin shots as needed--not a big deal. I am now going to Hokins 3 days a week and they are following my case very close.

Other than that, very tired, and weak (I am really feeling the muscle deterioration caused byt steroids) and don’t have a lot of energy though have to admit the steroids are having a positive impact by helping to give me some more energy. Keeping busy around the house but can’t wait until I feel well enough to get outside and at least take some walks. I am determined to get out sailing before season ends but just not ready to do that yet. Anyway, that’s the latest update—not exactly an exciting story but as we say, ‘boring is good’ as it relates to this subject!

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