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Support > Patient-to-Patient > Patient Experiences & Guidance

An experience with autologous transplant

Here's my transplant story. It's a long one. The first four paragraphs are my pre-transplant treatment so skip to the paragraph beginning "Dr. Horning" if you've read it before.

I had my lumps appear suddenly a year ago April 2001. My diagnosis was complete in May: small cell follicular NHL B-cell cleaved. I had expected to hear large cell because the lumps had grown so fast, and I believe my oncologist had expected that too. He said I did have some large cells mixed in, more in some tumors than others.

Dr Rubenstein did his oncology fellowship at Stanford University Medical Center and is well connected there. He thought Dr. Ronald Levy might be doing a trial on a vaccine and offered to contact him for me to see if they'd be interested in my participation. The protocol was being worked out with Genitope for their ID vaccine, and it called for "small cell follicular NHL not previously treated with chemo" so I had to hold off chemo until the trial was formally launched. That was June 2001. I had a tumor removed and immediately began CVP. My tumors began to shrink in a few days and I was very happy. About ten days into the trial, I received a call and was told my tumor didn't exhibit the ID protein necessary to make the vaccine from. This happens about 7% of the time. So I was removed from the trial, and was quite depressed. My tumors seemed to return to their previous size by the end of my 3 week cycle. The second dose of CVP didn't seem to shrink them as much. By the time I returned for my third cycle, I had grown new tumors and my previous ones were all as large or larger than when we started.

Dr. R. decided to escalate treatment and we went to CHOP plus Rituxan. I had six cycles of that, and by about the fifth, my lumps seemed to be gone. After the sixth (Dec 2001) I had another CT scan which showed several tumors still in my gut about 3.5cm. Dr. R. suggested another two rounds of CHOP + Rituxan. That was complete Jan28, 2002. February 2002 I had a bone marrow biopsy which was clean, and my 3.5cm tumors had shrunk to 1.5cm which is the maximum size a "normal" lymph node should be.

Dr. R. called it a "complete remission" but said he doubted it was really all gone. He said due to the way my tumors grew aggressively, didn't respond to CVP, and responded slowly to CHOP + Rituxan, he believed my lymphoma would return quickly and perhaps even more aggressively. He suggested my best chances at a durable remission were through a bone marrow transplant and that he would call his former colleague at Stanford, Dr. Sandra Horning. She's a very big player in blood cancer circles. She met me and agreed with Dr. R's assessment and got me into their transplant program.

Dr. Horning also explained what (in this circle) we call "mini-allogeneic" transplants. Stanford calls it "non-ablative bone marrow transplant". There are essentially three choices for a transplant patient. The first is self-donating (autologous) where his own cells are collected for later transplant, and the other two are allogeneic meaning the cells come from an outside donor. In the past, both type of transplants occurred after the patient's immune system was totally killed off. The mini, or non-ablative transplant has only been performed for a couple years and it's promising, but has much less (and no long-term) data. The cells have to be from a brother or sister who has a chromosome that determines "self" that is quite close to the patient's own. Then there's a mild dose of chemo (which doesn't kill everything but knocks down the patient's immune system, the cells are introduced, and both the new cells and the existing ones regenerate together. In my case, neither my brother or sister were a close enough match, so we had to do the autologous transplant.

The autologous transplant is ablative. The way one doctor explained it is when I received my previous chemo treatments, they could only kill up to the point of immune system toxicity. With the transplant, they could kill up to the point of organ toxicity (far beyond what the immune system can withstand).

In the past, transplants were call "bone marrow transplants" and they sometimes still are. When first performed, the only way to harvest the cells to rebuild the immune system was to drill into the hip and suck out a pint or more of bone marrow. This contained the stem cells that actually do the rebuilding. Modern medicine has a much better method now, though sometimes it's still necessary to harvest the old way. In my case, I had my stem cells mobilized and collected with an apheresis machine.

Stem cell mobilization is achieved by first giving a pretty high dosage of Cytoxin. I heard 6X what I would have received in my CHOP. I had to spend the night in the hospital but was released the next day. Unfortunately, a couple days later, I experienced a side effect of Cytoxin hemorrhagic cystitis and was re-admitted for 4 days. Right after the Cytoxin I began a series of injections of Neupogen, a growth stimulant. My blood counts were measured daily, and after about two weeks, began to rise dramatically. Normal healthy people have WBC in the 4.5-11 range. When mine hit 4.5, they called to arrange my apheresis collection. Because it was a weekend right after Mother's day, they didn't have anyone to do it until Sunday. By then my WBC was 56.6 (recall normal high is 11!).  Apheresis is a process where the blood flows out one tube into a machine that has a centrifuge or filter or combination of both, the part that's being collected gets separated and the rest returns in another tube. The collection takes about three and a half hours. I did this for two days, but the second one was largely a waste; my results hadn't come in due to the lab being closed Sunday, but Monday I heard they got all they needed from the first day. Sometimes it takes people a week of apheresis before they get enough, however.

Autologous transplants have a drawback which is you may get infected cells back after the chemo. That's why they like to do them on patients in remission. Stanford has a new machine called an Isolex 300i they're using to address this. Check out http://198.89.137.185/ isolexflash.htm for the slide show. Essentially, they use a monoclonal antibody to attach to specific cells, then add hooks, magnetic spheres, and using magnets, pull the cells over the edge to collect. Amazing. The result is a product that is much purer than before (and also very small). The best part is it tends to engraft much faster than non-filtered cells, and by the way, the old bone marrow sucked from the hip is the slowest to engraft and has the worst side effects.

I got exactly two weeks to "relax" after the collection. On June 4, I began the first of my radiation treatments. I never understood exactly why, but they changed my treatment when I was having my mobilization chemo from three types of chemo to radiation and two types of chemo. Dr. Horning said for what I had, the radiation was a better and more typical choice. I was with patients who had the alternative treatment and I'm glad I had the radiation (sort of).

My immune system (and hopefully all the lymphoma in my body) was killed with 10 doses of FTBI (fractionated total body irradiation) over 4 days, then VP-16, one day rest, and finally Cytoxin (about 10X my CHOP dosage). Then one day rest and finally my transplant. The alternative would have substituted BCNU for the radiation. It's a pretty nasty drug. Radiation was about 6-7 minutes two or three times a day (7, 11, & 3:00) and then followed with Bactrin (an IV antibiotic). I was an out-patient, but basically at the hospital all day. By the second day, my red blood cells had tanked (not sure if this was radiation or more likely a leftover from the Cytoxin weeks earlier) so I began receiving transfusions between radiation sessions. Radiation felt tingly, but wasn't unpleasant for me. Some people have a harder time with it as there were smelling salts taped to the Plexiglas of the booth.

VP-16 comes in a 30% solution of ethlene glycol (plane de-icer or antifreeze) and can be hard for some people. I didn't have a problem but my roommate at the time, a 19 year old who had never had a drink before, was vomiting all night it seemed. They moved him out in the morning. I wretched once but the drugs handled the nausea very well overall. I had another roommate for a day who was getting his mobilization chemo (Cytoxin) and he had no problem and was released the next morning. Then I got my third roommate who had Hodgkin's lymphoma and he got BCNU. Seemed to do fine with it, though I know others have a rougher time. He was only 22 and in great physical shape. I got my final Cytoxin the same day and to prevent the cystitis, was on 6 liters of IV irrigation, diuretics, and Pyridium. It worked well and I had no major problems from it.

Stem cells harvested and filtered the way mine were fit in a tiny IV bag. It took less than three minutes to drip in. I didn't feel any different, and in fact, knew I'd be feeling worse before I'd be feeling better. At Stanford, they call the transplant day "Day Zero" and count upwards from there. Prior days are negative. I'm day 31 today, by the way. If I'd had BCNU, Stanford would have released me on Day1. I'd have had to return to the hospital as a day patient every day for a week or two, then they'd start skipping days as I progressed. With radiation, however, they keep patients for two to three weeks typically because there's pretty severe mucotosis which is the dying of mucous membranes throughout the body. This generally involves a lot of pain, and they find it's easier to manage in the hospital. By day three, I was ready to give up eating as my throat was so sore, swallowing my saliva was excruciating. I went on morphine for three or four days, then dropped to fentinol (I'm not sure I'm spelling everything correctly). By day9, I was beginning to feel alive again. My counts bounced back remarkably fast after that and on day11, I was released. That's much faster than most people.

I returned to the hospital daily for three days, and then was told I didn't have to return for another week. Once again, that was way faster than most people. Now I go in for weekly checks which involve blood work and often a chest x-ray.

I had a roommate until my counts really tanked, and I was moved on day4 I believe (ironically Father's Day her in the USA). He seemed to take the BCNU and other drugs pretty well while I was with him. After I got better, I visited him in his room and his body was about 40% covered with burns. My own skin didn't look good, but not THAT bad. I had folliculitis on my head and chest mostly which looks like very bad acne and then peels off. It's amazing that as you return from over the edge, much of the really unpleasant stuff seems to fade away.

I had to wear a HEPA filter for 30 days whenever I was around strangers or outside. I didn't have to wear it in the house unless someone was cleaning or if a window was open and there was a breeze. Respiratory infections are a huge problem and probably the major killer in the process, so being careful about what I breathed was stressed by Stanford. With BCNU, there's a specific type of lung infection that shows up in the second month; fortunately I don't have to worry about that.

My current status is pretty good. I was disappointed to hear my hematocrit (which is the percentage red blood cells in my whole blood) had dipped below 30 yesterday which means I'm anemic and explains why I lose my breath after climbing stairs. Dr. Horning said it's not unusual for counts to swing up and down for months after a transplant and they don't really know why, but it typically resolves itself. I'm also experiencing itching all over my body and nothing seems to help including scratching (which they tell me not to do.) I'm sleeping longer than before all this, but probably not nearly as much as right after getting home. It was probably 12 hours then and 9-10 hours sleep now. My appetite is slowly returning, and so is my taste. It's a struggle to eat at first, and takes a lot of effort not to lose weight. I see a lot of older men (in their 60's usually) at the hospital with belts holding up their pants (barely). Overall, I lost only about 8 pounds of which I'd purposely put on 4 beforehand. That takes work!  My muscles are significantly weaker, but I'm starting to use hand weights and am already (in one week) noticing improvement. I seem to get a little nauseated every afternoon. Stanford uses Ativan aka Lorazepam which is a small pill that dissolves under the tongue. It's a sedative, I believe, but it does the trick. I've been needing one or two a day for the past 10 days or so. I'm also on an anti-fungal called Fluconazole which I think I have to take for three months. It's hard on the liver, so they prohibit me from drinking alcohol until that's over. I'm also on Bactrim again for month two with a very strange dosage: twice daily Saturday and Sunday for 4 weeks. Started that today.

Time will tell  whether this was worth it. My oncologist from my vaccine trial with Stanford, Dr. Weng, came and visited me as I recovered from my transplant. He said (in his Chinese accent), "Mok, it's all about time". By that he meant we all are working to buy time. So many things are on the horizon and all we have to do is be around for them. Even though Dr. Weng works mostly with Dr. Levy in the group doing the vaccine trial, they do a rotation throughout the cancer programs and therefore seem to all have a collective agreed-upon story. Stanford oncologists all seem to think that the autologous peripheral stem cell transplant gives NHL patients (especially those with difficult to treat varieties) their best shot at a long remission. They believe the time to do it is right after a chemo-achieved remission, not when the remission is ending and the lymphoma is returning. For young and healthy patients with siblings, they encourage the non-ablative allogeneic (mini-allo) transplant as being the closest possibility to a "cure". Some insurance companies won't cover it, though.

My bills haven't really started coming in yet. I've got Blue Shield of CA and they supposedly cover everything. I asked a man a few months ahead of me what it cost for the entire process, and he said Stanford's 45 page bill totaled $135,000 US. His insurance covered everything. I've heard the mini-allo is about twice as expensive.

This is probably the longest posting anyone has ever put on this list! Hopefully it wasn't too boring and will be helpful for some of you.

Mark (CA)
mixed cell follicular NHL stage 4
Dx 4/01 Tx 6/01-1/02 CVP x2, CHOP+Rituxan x8
technically "complete" remission 2/02
autologous peripheral stem cell transplant 6/12/02

 
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