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,
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://188.8.131.52/
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.
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