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Friday, July 27, 2012

Hiccup, Not a Glitch

After suspending treatment last Friday because of low blood counts, I went into DFCI on Tuesday hoping that I had recovered enough to resume the Vel/Rev/dex therapy.  It was not to be.  Despite my having skipped the Velcade on Friday and stopped taking the Revlimid, my numbers were actually worse on Tuesday!  My white blood cell count (WBC) dropped from 2.4 to 1.8, and my absolute neutrophil count (ANC) went down from 994 to 750.  Gulp!  At least I hadn't become officially neutropenic, which is when the ANC drops below 500.

I was obviously disappointed.  Again, my Velcade infusion was skipped and I was told not to take either the Revlimid or the dexamethasone until my neutrophils have recovered.  To help this process along, I got a shot of neupogen to stimulate white blood cell production.  Muriel Gannon reassured me that this is a very common problem, and it is just a hiccup, not a glitch.  She was pretty sure the problem is due to the Revlimid, not the Velcade.  This surprised me at first, because during my induction therapy, I was taking 25 mg of Rev without any problems.  Now I am only taking 15 mg.  Muriel said that the reason is my stem cell transplant.  My body still hasn't fully recovered and I am more sensitive to the drug side effects.  I guess that makes sense.

I immediately put all this behind me as I drove directly to Dartmouth, MA and embarked on a relaxing two-day sailing adventure with my friend, Lew.  We moored his boat for the night in Cuttyhunk and watched the beautiful sunset as we ate oysters on the half shell delivered to our boat and grilled filet mignons for dinner.  Not too shabby!  Lew makes a mean martini, which I have to admit I imbibed, but don't tell Dr. Richardson.

The next day, another friend, Sam, came over on the ferry, and we sailed to Menemsha on Martha's Vineyard, where we picked up some harpooned swordfish (yum!).  Dinner that night was even more delicious, if that's possible. We all went swimming, but I have to say that on a relative scale, I would rather have an IV stuck into my arm than dunk my whole body into the cold Massachusetts ocean.

I came back home yesterday, happy but exhausted, and collapsed until this morning.  I went back into DFCI with my fingers tightly crossed, hoping for the best.  I guess the neupogen shot did the trick, as my WBC has jumped up to 7.7 and my ANC skyrocketed to 6,160!  Now, I am back on the consolidation therapy, but my Revlimid dose has now been reduced from 15 to 10 mg going forward.  I have next week off before going into the final cycle of my Vel/Rev/dex consolidation protocol  I hope there are no more glitches, hiccups, or whatever to contend with as this therapy continues.


  1. Stem cell transplants destroy your immune system....

    1. Yes, you're right of course. It's only been 4 months since the transplant, and I'm sure I have a long way to go before my immune system builds back up again. The hope is that it will regenerate without the myeloma cells, giving me some extra time before eventual relapse.

  2. I am sure things will rebound sooner rather than later. Are you considering an integrative approach to help boast your immune system and decrease the likelihood of relapse? Combining medicine with customized diet, supplements,and other modailities have has stunning success at such places at the Block Cancer for Integrative Cancer Care. I think there is a big book describing the approach. May we worth looking into, as you appear to have the determination, perspective, and general good health to apply such an approach.

    Best wishes

  3. Also, when I say "destroy the immune system," I was admittedly being a bit more sinister. Non-transplant advocates -- such as James Berenson and even to some degree I believe, Ken Anderson - caution that the HDT mustard-gas therapy not only destroys your stem cells (which one hope will be regenerated by the transplant) but also decimates the "soil" that the cells rely upon to grow and differentiate properly. In other words, it destroys ALL dividing cells in the bone marrow and elsewhere. And it can take a long, long. long time to reestablish the right environment again.

    So patience is part of the challenge in combatting this sinister disease. I keep harping back to the general observation that some MGUS patients -- who can live a full life with NO treatment -- can nevertheless have substantial M-spikes (up to 30 gm/liter) and substantial MM cell involvement (up 10%) -themeselves arbitray cutoffs. This tells me that the body may be able to keep the MM in check if initial therapy is effective in knocking the cancer on its keep it up..

  4. Dear Anonymous, Thank you for your inputs and suggestions. I haven't yet looked into an integrative therapy approach, but I have modified my diet somewhat. I eat more fruits, vegetables, and fish, while limiting my alcohol intake to red wine. I have also recently begun taking supplements, such as fish oil and curcumin, as well as B6, B12, D3, folic acid, and calcium. At your suggestion, I plan to look into the several books available on Integrative Oncology.

  5. Hi Bill,

    I enjoy reading your Blog and I enjoyed your piece on Pat K's blog - thanks for sharing. I would check with Dr. Richardson about your taking Folic Acid (or any supplements for that matter).

    I would not worry that you did any damage to the "soil" of your bone marrow by doing an auto. There is direct evidence to contradict what Anonynomous wrote above. I know that many patients do not understand allo transplants. The Donor immune system can identify the cancer as foreign and kill it. That is why it is considered curative. A patient has a better chance of not relapsing if they use high dose therapy (I used Melphalan/Fludarabine before mine) right before getting the Donors immune cells than if less intense conditioning is used prior to transplant. Since allo patients are relying on the immunotherapy of the Donor immune system for long term disease control, if what Anonymous said was true allo patients would do better after less intense conditioning, not more. This long term study of myeloma patients that did allos clearly contradicts Anynomous theory that it is bad to destroy the "soil" of your bone marrow.

    "Risk factors being associated with diminished PFS and OS (given data) were >1 prior ASCT (OS:HR=2,80, p=0,00;PFS:HR=2,76; p=0,00), allo-HSCT more than 10 months after last ASCT (OS:HR=2,09, p=0,012;PFS:HR=2,47, p=0,001), no partial remission (PR) at time of HSCT (OS:HR=2,41, p=0,002;PFS:HR=2,31, p=0,002), application of a "reduced intensity conditioning" (OS:HR=2,11, p=0,009;PFS:HR=1,93, p=0,015) and a lower CD 34/MNC count (OS:HR=1,89, p=0,047;PFS:HR=1,82, p=0,040) in univariate analysis. In multivariate analysis >1 prior ASCT (OS:HR=2,81, p=0,001;PFS:HR=2,89, p=0,000) and "RIC" (OS:HR=2,00, p=0,022;PFS:HR=2,09, p= 0,010) could be confirmed as independent risk factors. Patients reaching at least a PR prior to HSCT and lacking the latter two risk factor reached an OS of 60% and PFS of 50% with a follow-up till 17.5 years."

  6. Thanks for your comments. I am taking folic acid at Dr. Richardson's recommendation, so I'm sure it's OK. Your references on the effectiveness of high-dose therapy for transplants are interesting.

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