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Day 47 - Nov. 28
Prior days were accidentally deleted. The new site address is http://postallotransplant.blogspot.com/ A transplant photo is at the second page of http://www.marsonphotos.homestead.com/ (under “Transplant” tab).
Day 49 - Nov. 30
Day 49 - seven weeks since the transplant.
For first-time visitors, I was diagnosed with a low grade non-Hodgkins (follicular cleave-cell) lymphoma while living and working in Beijing, China in 1995. First chemo was in 1999, followed by vaccine, various trials and more chemo. The lymphoma transformed to large diffuse cell at the end of 2002, followed by more chemo and an autologous bone marrow (stem cell) transplant at SCCA and UofW in Seattle in 2003 with high-dose radio-labled antibody (high-dose Bexxar) and Cytoxin as conditioning. In remission until a spot appeared in my left femoral head in October - December 2006. The femur fractured in May 2007 and was eventually partially replaced with a prosthesis. An occurence in my left humeral head was treated with radiation in August. More chemo and radiation and then a non-myeloablative bone marrow (stem cell) transplant at Stanford with ATG (rabbit serum) and Total Lymphoid Irradiation as conditioning. Received brother Dean’s cells on October 12. Currently taking immunosuppresant and other drugs and supplements, but doing very well. Engraftment test at Day 26 showed 93% engraftment. Yesterday’s blood test showed some blood counts below normal, but everything within expected and acceptable range.
Day 54 - Dec. 5
Check up day-before-yesterday (Monday) was fine. We received a schedule to taper off cyclosporin by reducing the total of daily doses at the rate of 25 mg each week. That is, the dose drops 25 mg per day on Friday and remains at that level until the next Friday. Starting from the current dose of 400 mg per day, at such taper rate it will be late-March before the medication is completely stopped.
Otherwise, no news is good news.
Day 55 - Dec. 6
Blood tests all acceptable today and vials of blood were also taken to for a second check of engraftment - the result should be available in two to three weeks. According to normal monthly rotation a new doctor took charge of the transplant section. He remarked that I seemed to be doing remarkably well for someone who had been through so much chemo and radiation, which I attribute to the prayers and hardwork of my family, friends and caregivers (and probably some helpful genes from my parents).
At my request, a needle biopsy will be taken next week of a small swelling under the skin near the scar tissue on my left leg. The swelling is probably of no consequence, but it pays to be careful after exposure to high dose radio-labled antibody. Certainly all of my epithelial tissue, including my skin, was killed in the 2003 transplant and sloughed off in one way or another over time (I believe the outermost layer of skin is composed of dead cells anyway but when that wore off after the first transplant, it was like having baby skin for several days).
Day 59 - December 10
Blood counts are good except for creatinine, which is somewhat high - probably from the combination of Cyclosporin (Gengraft) and Bactrim on the weekends. Biopsy of swelling on leg taken today.
Day 62 - December 13
Blood counts were steady, but some unfortunate news regarding the swelling. It is an extra-nodal recurence of lymphoma. A PET-CT scan and bone marrow biopsy have been scheduled for tomorrow. Depending on the outcome, there are a number of steps that can be taken to encourage the grafted immune system to react to the lymphoma.
Day 63 - December 14
PET-CT and bone marrow biopsy (pelvis) today - should know the results by Monday. My bloodcounts are, if anything, better today. The Cyclosporin taper was speeded up to three weeks instead of three months to encourage the grafted immune system to become more active against the disease. I should be off the drug by early January, but of course that increases the possibility of graft-v-host disease. I heard the doctor say that they may also radiate the spot(s) where the lymphoma has recurred or inject some agent into a nearby lymphnode, both treatments would be for purposes of stimulating an immune reaction - I should speak with him in more detail on Monday.
Day 66 - December 17
Good news! The preliminary results of the PET-CT scan and bone marrow biopsy show that the lymphoma is confined to two spots on my leg. Radiation should be started on them this week, not so much to cure them as to kill enough to get the grafted immune system excited with the debris from cancer cell death so it will increase its attack on the active lymphoma. The doctor may also inject CpG into the tumor if he can get permission to do so. The Cyclosporin was also reduced to 175 mg. starting today. Blood counts are good.
Day 68 - December 19
Celebrated our 19th wedding anniversary yesterday. We saw the radiation oncologists this morning who confirmed there are only two spots, but they are growing rapidly. The oncologists intend to apply a fairly high dose of radiation over three weeks to kill the lymphoma. Fortunately the spots appear to be outside the field of the original radiation, but they are very close to it and the radiation exposure will be calibrated to avoid delivering any more to the already radiated area of my leg. I had a CAT scan and tatoos applied this afternoon to prepare for the radiation which will start on Friday.
Day 70 - December 21
It’s the Winter Solstice soon and the sun will start climbing higher from the horizon. In December 2002 when the lymphoma transformed, it was not clear that that I would see the next Christmas - with the help of family, friends and health care professionals, and the grace of God, I will have seen five when Christmas comes in four days. Thank you.
My blood counts were good yersterday, and I received the first dose of radiation today (Friday) . The plan is to coninue on Saturday and Sunday, and then every business day for several weeks in order to completely eliminate the recurrences in my leg.
The recurrences both occur near incision sites where my leg was operated on and might represent cells that were moved inadvertantly from the femur to such sites when the first operation was done in May. At that time, I had received only 7 out of 23 fractionated radiation doses.
The cancer cannot be that easily defeated and will probably remain in my system. However, reducing the tumor burden should both stimulate an immune reaction and enable the engrafted immune system to gain control over the cancer. The transplant doctor pointed out that the fact there are no other recurrences showing up may show the effect of the new immune system.
Day 73 - December 24
Blood counts good and the growth of the two tumors seems to have stopped, and they should start shrinking. The doctor assured me that no other occurences had shown up and the radiation should be effective. The tumors have been surrounded by an apparent bruise - a good sign that the grafted immune system is fighting them. One could look at it as a kind of boot camp - the enemy has attacked again and the radiation is softening it up so the grafted cells can learn how to recognize the enemy and fight back. Once the immune system gets control, I should be cured (to the extent that cancer is ever cured). If the tumors had occurred near an internal organ, the prognosis would not have been nearly so good.
The doctor indicated I probably have a very small amount of graft v. host disease (rash) around my neck and chest and therefore did not decrease the Cyclosporin further. The GVH is a good sign, but the doctor said if the Cyclosporin was completely discontinued now, I could suffer from very severe GVH.
The engraftment results for day 56 are complete and are broken down by type of cell and location (blood or marrow). They range from 91% to 99% engrafted - very good results.
All in all a lot to be thankful for.
Merry Christmas and a Happy New Year.
Day 76 - December 27
The radiation continues, although I will have the weekend and New Year’s Day off. The tumors remain hard and about the same size - difficult to tell what is happening. Blood counts are good and the Cyclosporin dose was reduced to 100 mg./day, to be ended altogether soon.
Day 80 - December 31
Best wishes for health in the New Year.
The lymphoma spots are very slowly shrinking and I am concerned the radiation may not be effective to completely eliminate them in 15 doses. If they started from cells removed from my femur at the time of the first operation in May, then they have already been exposed to 14+ Gys. of radiation and survived.
Dr. Weng was on duty today, and we discussed adding CpG, Avastin or Recentin, or decreasing Cyclosporin. He did not think the first two options would be available but indicated he would discuss with Dr. Levy.
Everything else going well.
Day 83 - January 3
Made it another year.
The lymphoma spots are shrinking slightly. I had a discussion with the doctor supervising the ITA at present. It was detailed and somewhat heated at times, but it seems the CpG and other alternatives are not available to supplement the radiation. In any case the radiation has worked in the past and should work again. All else is going well and I am tolerating the low doses of Cyclosporin (100 mg. per day).
Day 87 - January 7
The physician’s assistant today said I should be able to stop using the mask and start eating regular food on about day 90 (which is very soon). Sometimes instructions change at the last minute, but we are very much looking forward to this change. However, I will have to continue on Cyclosporin for at least a month or two, and will have some lifetime restrictions, such as staying out of the sun.
The lymphoma spots are shrinking. We are praying that they will be finally gone and the lymphoma will not appear anywhere else.
Day 90 - January 10
Yesterday, the radiation oncologist (Dr. Hancock) examined the lymphoma spots and determined that they had not reacted (reduced) enough. After speaking with Dr. Weng, he decided to give me an additional week of a different kind of radiation (electrons v. high energy X-rays) as a “boost” to the radiation treatments. He was also present as the spots were “mapped” this morning in preparation for treatment and had the machine adjusted slightly. His personal attention to detail was comforting. For whatever reason I have had a bad feeling about these spots for about two weeks. Hard to explain the source of the feeling, but it has been affecting me deeply.
A new lymphoma doctor is in charge of ITA, following normal monthly rotation. I no longer have to wear a mask, except when in crowds or when the wind is blowing and stirring up leaf litter or dust. I can also gradually transition to a normal (non-low microbial diet), and the cyclosporin was reduced to 50 mg. a day. My need for magnesium has been decreasing with the reduced cyclosporin, but I seem to need a potassium supplement at each visit. I have some minor itchiness around my neck but no GVH serious enough to prevent to reduction of cyclosporin.
All in all, things are going well. Thank you for your continued support and prayers.
Day 97 - January 17
An eventful day today: 1) last day of radiation, 2) another bone marrow biopsy, and 3) probable GVH on my neck and shoulders. The lymphoma spots have shrunken to small hard disks, which may be scar tissue. I would appreciate prayers that the bone marrow biopsy and PET scan (which I will have in a week or two) come up clean (show no obvious cancerous activity). The probable GVH looks like hives. It is a good sign in that it shows the grafted immune system is active, but it can be deadly if it gets out of control. For now, the doctors are controlling it with a topical steroid cream which seems to work well. They are also continuing the cyclosporin at the same level, and, based on my own decision, I am cutting out irritating foods with caffeine, hot spices, a lot of sugar, etc. Of course I still need to avoid sunlight and crowds, although I attended church for the first time (with my mask on).
Except for some itching, I feel great.
Day 100! - January 20
Graduation day. This is the day most transplantees (many of whom come from out of the area) are transferred back to their home clinics. Once again I would like to thank my family, friends and caregivers for their prayers and support in helping me reach this milestone.
The GVH continues but seems to be controlled by a prescription steroid ointment.
Day 101 - January 21
My blood counts are a little low but we got great news from the bone marrow biopsy: “The current bone marrow analysis reveals no morphologic or immunophenotypic evidence for residual/recurrent lymphoma.” Tomorrow I will have the second major test, a PET scan, and should know the results by Friday or Monday.
The GVH continues to be troublesome (itching, mild rashes, and a few dry spots on skin), but seems to be well controlled by the steroid ointment. Oddly enough, the most troublesome sites are near, but not at, the two main sites where I received radiation.
Day 105 - January 25
Today was our first day in clinic (instead of ITA), and we met with Dr. Weng and Karen, a physician’s assistant who had previously examined me in ITA. There were two pieces of good news and some bad news. The first good news (actually great news) was that the PET scan was clear, so neither the PET scan nor the bone marrow biopsy show any sign of disease.
The second good news was that the rash I have been dealing with (and which has been spreading) does not appear to be GVH, but rather an allergic reaction as evidenced by high eosinophils. We will try and treat it with over the counter antihistomines and Pepcid. Definitely easier to treat the GVH.
The bad news (which is not actually bad, but somewhat unexpected), is that the graft v. lymphoma effect has not kicked in yet. No tests were done, but it apparently does not start to act until 4 1/2 to 5 months after the transplant. Since the kind of lymphoma I have is systemic, it is undoubtedly still in my body and could recur. The rationale for the allo bone marrow transplant is to take advantage of the graft v. lymphoma effect to keep the lymphoma in check and keep me in a permanent remission. As there is some risk that between now and the 5 month mark (March 12) the lymphoma could recur, I will start Rituxin X 4 next week. I have had Rituxin many times before and it has always been easy to tolerate.
Day 112 - February 1
My counts were lower today and the neutrophils dropped into neutropenic territory (less than .5 or 500). They were .48 or 480 and I received a shot of Neupogen to stimulate white blood cell production. The doctor said he didn’t know why the drop happened, but it is not uncommon at around 100 days post-transplant.
It has been a very itchy week. The rash has spread over most of my body, but I am taking Benedryl every 4 to 5 hours to keep it under control. I am also taking Pepcid and now Claritin, all of which are blocking H1, H2 or similar receptors. Also, I am applying a cortisone cream. All of these together keep the symptoms (itching, tingling) to a bearable level.
They also infused Ritixun today at ITA. It took a long time, but I had no noticeable symptoms.
Overall my current profile seems good - it demonstrates the grafted immune system is activated while I have not yet had to take Prednisone.
Day118 - February 7
Another round of Rituxin today. I hestitate to think of the cost of Rituxin infusions alone over the years — probably $2 or $300,000. However, it is a tremendous improvement over regular chemo in terms of side effects.
My blood counts have come up (neutriphils over 2.0) and rash is much improved. Still not sure what caused it — might be shellfish, although my donor is only allergic to scallops, which I have carefully avoided.
Much to be thankful for.
Day 125 - February 14
Rituxin again today, together with potassium. Counts slightly lower. Eosinophils down to 7 and rash largely subsided, but still taking some H1 and H2 blockers (e.g., Benedryl). Working part-time. Glad to be here!
Happy Valentine’s Day.
Day 132 - February 21
Last Rituxin treatment today and it was uneventful (no news is good news). I saw Karen the PA; she checked the former cancer spots on my leg, which are now hard disks, probably scar tissue. My next appointment is scheduled for March 21st, with a PET-CT a few days before. I have some continuing rash and an elevated eosiniphil count which is kept under control with antihistimines and other blockers, but otherwise I am doing very well.
The next goal is to have the graft v. lymphoma take effect before the lymphoma returns. Based on the doctor’s comments, that should be five months following transplant, or March12, but this is largely an arbitrary date. The ”proof of the pudding” will be that the lymphoma does not appear in a new location and that the March PET scan is clean.
Day 136 - February 25
As a break from the medical news, a plum tree has been blooming in a nearby street for several weeks, and trees near my office are already starting to drop their pink (cherry or ornamental cherry?) blossoms. A big flock of black and white ducks of some sort were milling in a large group in the Bay and wondering off across the water in pairs. We are still getting rain storms but Spring has arrived in the Bay Area.
Day 149 - March 9
I am continuing on 50 mg. Cyclosporin (Gengraft) and anti-histamines. The latter keep the itching under control, but it has intensified lately around the corners of my jaw, just below each ear. This was a lymphoma site several years ago.
New picture of home and office are posted on the website (address above).
Day159 - March 19
A sore spot developed in the side of my throat on Thursday — tender inside and outside but no lump. I was concerned that it might be a recurrence of cancer, thyroid cancer or similar problem. Discussed with the doctor by phone on Monday and he said it is probably GVH. PET scan yesterday and I will get the report on Friday when I have a doctor’s appointment. Dr. Weng examined my skin (some red spots) and throat yesterday and prescribed prednisone, 60 mg. for three days, then 40 mg. for three days and so on. Otherwise things seem to be going well.
Day 162 - March 22
Had a PET-CT scan on Tuesday and it was clear. Praise God and thanks for your prayers and good wishes. The sore throat was apparently GVH and I also developed a few dry, red spots on my jaw near each ear and in a few other places. Dr. Weng prescribed prednisone, three days at 60 mgs., three days at 40, working down to three days at 10. On 40 now. Still on 50 mgs./day of cyclosporine, but apparently no need for anti-histimines while on predinsone.
The doctor also recommended another round or Rituxin three months after the first round, and perhaps later rounds every three to six months for a while.
The weather is beautiful in Palo Alto these days - blue skies and green hills with lots of trees taking turns flowering, California poppies, and other trees leafing out. I walked for 1/2 hour uphill and dowhill today without a cane, the uphill was a bit of a stretch, but it felt good.
Day 168- March 28
Down to 10 mg. of prednisone a day starting tomorrow. Predinsone seems to be a common treatment for lymphoma — at least I have had a lot of high, short-term doses over the years. Usual problems (mainly when dosages are decreasing) include short temper, distrubed sleep pattern, feeling emotional, occasional tingling and numbness in exteminities, but also food tastes really good and sometimes more energy than usual. I think I will write an essay called “Enjoying Prednisone”. Why not look at the bright side as long as one has to go through it so often?
We went on vacation to Southern California — Joshua Tree National Park and the Sky-lift near Palm Springs. I took precautions like buying UV resistant clothing, using lots of sunscreen and avoiding crowds, and it seems to have worked out. We had a great time and will put up some pictures on the website soon. It was wonderful breathing big lungfulls of the clear desert air near sundown with a pleasant breeze ruffling the pinyon pine branches, and a nice contast to days last summer and fall lying when I was lying in a hospital bed.
Day 175 - April 4
It has been an odd week. After the prednisone ended last Sunday, I experienced, as expected, low energy, short-temper and emotional swings. However, I also developed symptoms like the onset of flu — muscle aches, stomach upset, sinus aches, tiredness and disturbed sleep patterns, with a few transient fevers. It was as if the white cells were sending out cytokines and other signals to prepare the body for an attack, but then upon closer examination said “sorry guys, back off. It was a false alarm”. And then they start the alarm all over again a few hours later. Perhaps it is part of Dean’s cells adjusting to my body and my body adjusting to his cells. I have spent a lot more time in bed but don’t feel all that bad — nothing like a heavy dose of chemo, for example.
Day 184 - April 13
The six month point! The pains mentioned above are generally gone, but I have a large sore in my mouth, and soreness on one side of my throat. A small price to pay as long as the lymphoma doesn’t return. I had a few tinges under my arms, a typical lymphoma site, but they seem to have gone away. Probably just overly nervous, as cancer survivors are wont to be. I am back at work on about a 1/3 schedule. Trees have burst out in leaves and different kinds of flowers come and go. The temperature was well over 80 yesterday - a lot of things to enjoy around Palo Alto.
Day 191 - April 20
I saw Dr. Weng on Friday. My blood counts are good, mild GVH in my mouth that comes and goes. He agreed to decrease my Cyclosporin to 50 mg. every other day. He also tentatively agreed that we could travel to Taiwan to see my wife’s family in August. The next round of maintenance Rituxin is planned for mid-May (one infusion only, not four like last time). I rode my bicycle today for the first time in almost a year! Not hard but I have to lay it down and step over it to get on. I am being very careful because a crack-up could dislocate my leg. But — it is really pleasant to ride.
Day 195 - April 24
The reduced cyclosporin has noticeable results. On the one hand, somewhat increased GVH in my mouth and throat. On the other hand, more energy and an increased sensitivity to smell, touch and other sensory input. The change is quite remarkable. When I started taking cyclosporin, it seemed like a very fine but dark veil was drawn over my mind. Now it feels like that veil has been largely removed.
Day 205 - May 4
Karen, the nurse practitioner at ITA removed my central catheter on Friday. She injected some lidocaine, but the procedure was painless, both when she did it and after the lidocaine wore off.
Day 218 - May 17
An infusion of Rituxin on Thursday, May 15. Dr. Weng indicated I would get another in three months, and perhaps every three months after that for a while.
Some problems with mild GVH, mostly showing up as red patches with dry skin that respond to cortisone creme. Also I have been itching a lot. Medications unchanged.
Day 239 - June 7
Medications still unchanged. Had first cold/flu since the transplant, and seem to have given it to my family as well. They all recovered within 2-5 days after a little congestion and coughing. I am just recovering after two weeks from serious bronchitis, but I am clearly recovering. Great news! Also had some problems with my eye which seem to be clearing up.
There are still up times and down times, but lately I have begun to feel like — “maybe the cancer really is in long term remission; maybe I have a chance at a real life again after all” Very positive and a little scary. The day after having this feeling, a new pain seemed to develop in my upper leg. Could it be the cancer? Was I tempting fate by feeling like I (and the doctors and all the people supporting me) might have succeeded. But you can’t live in fear — I’ll take positive, good feeling whenever I can get them.
May God give you or your loved one full recovery and radiant health.
Day 269 - July 5
I am doing well and working about a 2/3 schedule. Still taking Cyclosporin, etc. My health is generally good, but I some problem with an old eye injury that repeatedly scapes open. This morning the tissue around my eye was swollen — perhaps it is an allergic reaction or mild GVH that causes the problem to repeat.
Hope you had a great fourth of July.
Day 340 - Sept. 14
Since the last posting, I took my first airplane flight - to Taiwan for two weeks. It generally went well, but I have had something like a low grade cold and mild, intermittent stomach upset since them. On Friday, I have a blood test that showed a mild increase in liver GVH, but serious enough for medication.
