WARNING: Technical,
icky, and personal information below. Also this is a very long document.
Enter with care!
Sandy and I went to Tampa yesterday, and visited with Dr.
Sotomayor, The Wizard Of Mantle Cell. Will save editorial comments on the
inefficiencies of the Medical Machine until another post, and focus on the
information we gained. We also met with a couple of other specialists and I had
one procedure done.
First, it’s not a given that what I have is relapsed Mantle
Cell. Dr. Levine had indicated there was a chance this was Diffuse Large B
Cell, not MCL. Dr. Sotomayor feels highly sure it’s MCL, but says there is a
chance it’s something else. He mentioned, for example, Follicular lymphoma.
Also, the fact I was in remission for 6 years is highly encouraging, and
there’s a chance this could be what’s called “indolent” lymphoma (as opposed to
“aggressive”). Often, for indolent lymphomas, the “watchful waiting” approach
is best, delaying treatment months or years until its necessary.
Short and not too happy message here: last time, we swung
for the fence and went for a cure, for this pretty much incurable disease.
Well, guess what. No cure. The rest of this post is better news, though.
To that end, we knew a biopsy was in the plan. We had
figured it would be an excisional type, meaning surgery to remove a node for
analysis. Instead, or in addition, today they did a needle biopsy. Just what it
sounds like, using a big syringe to remove fluid from a node, in this case from
the pelvic area. One more encouraging note: while CT scans showed lots of
affected internal nodes, all 4 doctors that felt around couldn’t find any in my
neck, shoulders, or underarms big enough to even biopsy. We take that to mean
my case is much less advanced than last time, which just has to be a good
thing. There’s still a school of thought among me and my fellow optimists that
this isn’t cancer at all, but rather some sort of infection. This type of
biopsy doesn’t always produce verifiable results, but is so much less intrusive
it’s worth a shot. If it doesn’t prove anything, it’s on to the surgical verification.
Next, assuming it is (and most probably, is) MCL. There are
many more options than we had last time. Here are the major “branches” on the
treatment tree. Dr. Sotomayor is very visual, always draws pictures and
diagrams for us. Unfortunately, his handwriting makes mine look lucid, so there
was a lot of head scratching and internet searching last night to recover what
he’d written.
Branch 1 – Standard Of Care: Bendamustine + Rituxan,
followed by 2 years of maintenance Rituxan.
This is the default treatment. He thinks there is a
significant chance it would put me back in remission and keep me there 4-6
years. All the research we’ve done, and comments by most doctors, have this as
a pretty sure thing. He isn’t quite that ready to commit. He said 40-60% chance
of complete remission, else a good chance of partial remission. Treatment is
milder than what I had before. This would be administered by my home
oncologist, Dr. Levine. 4 to 6 cycles, 3 to 4 weeks apart for the Bendamustine.
Branch 2 – Clinical Trials
Understand, with cancer a clinical trial isn’t one of those
double blind things where some people get the medicine, and some get nothing.
In cancer, you either get one treatment or the other, and you know what you’re
getting. They just compare groups of patients for who has better results. Most
get the Standard of Care, volunteers get the trial treatment. There are also
different levels of trials, usually called Phase 1, 2, and 3. Phase 1 are
early, Phase 3 pretty mature. Most research comes out of Germany, moves west to
the UK, Canada, then the U.S. So by the time a trial is here, it’s quite mature
and well understood, just not FDA approved (possibly) or recognized as Standard
of Care by insurance companies.
There are two he recommended we investigate, both Velcade
plus something.
One is a cell cycle inhibitor called PD (http://www.pfizer.com/files/news/asco/pd_0332991_cdk_4_6_inhibitor_fact_sheet.pdf)
The other is (we think) Velcade plus dexamethadone.
These two, he says, are very promising. A down side would be
that I’d need to have a lot of the work done at Moffitt, involving a lot of
driving. We are going to get a call from the Clinical Trial coordinator to have
a long discussion about these options.
Branch 3 – RIT (radio immunology therapy): Epratuzumab
Waited a while to talk to a nice radiation oncologist. Can’t
do this one, since I had Zevalyn last time. But, he said, if Dr. Sotomayor and
Dr. Ayala (transplant doctor) agree, a similar compound, Bexxar, could be part
of my basic treatment as a “retreatment.” We have a lot of research to do on this
one. Zevalyn was hideously expensive. (one shot, the sticker price was $98,000;
discounted to $54K by going without stereo and wheel covers).
All of these still leave open the chance to do an allogeneic
(donor) transplant, either right after I go back into remission, or possibly
later. Again, lots of talking to do on this. I will have an appt with Dr.
Ayala, my transplant doctor, shortly to discuss the pro’s and con’s and
possibilities. This is something I chose to forego last time, in favor of the less
risky autologous (self) transplant. I can’t do another autologous, so it’s up
to a lot of factors whether I go for the allo transplant this time, or wait.
(Overall historical average survival rate on an allogeneic transplant is
80-90%, so even though I’m young and healthy, that’s something to consider
carefully)
We also talked about other possibilities we’d researched. I
don’t qualify for a vaccine trial, because right now he’s only able to do this
for first time (not relapsed) patients. We talked about dual antibody therapy (too
new, not ready for prime time) and Hyper-CVAD (too harsh for my condition).
I signed up for a very interesting, and potentially very
beneficial program called Total Cancer Care. This is a study where I donate
extras of each sample (blood, biopsies, etc) and they do genetic analysis on
them. Thousands of people are participating. The analysis is meant to
contribute to broad research and long term development of treatments, BUT … if
analysis shows something current would help me, that info would be fed back
into my treatment plans. Unfortunately, results wouldn’t be available in the
short term (something like a year) but very likely would be available to help
with my next remission/relapse cycle in a few years. We could pay for the
analysis to be done now, costing thousands of dollars not covered by insurance.
More to think about.
Summarizing:
We need to talk to the clinical trial
coordinator, and transplant doctor. Need to get results of needle biopsy.
Possibly need to get excisional biopsy done.
Then decide treatment plan.
Comforting thoughts:
It is very feasible, that, using the
Standard of Care treatment, I could take a not too severe treatment regime, go
back into remission for another 5 years, then when I relapse again, either do
the allo transplant, or ride the odds that two to five more technology cycles
will have produced something even better, safer, and more like a cure.
For those of you with serious medical chops, or techno-nerd
risk takers, here is “the” paper explaining what’s in the head of The Wizard. I
wouldn’t go in here without a paddle. You’ve been warned.
Thanks for reading, and God Bless You for your prayers and
encouragement!
KB
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