I called Kathy Colson today to get the final results for Cycle 6 of my MLN9708 protocol. As I expected, everything was the same as Cycle 5, with no M Spike and no monoclonal gammopathy detected in the blood serum immunofixation. The urine immunofixation was also the same as last month, with the reading "cannot rule out small monoclonal protein". It appears that I may have achieved a plateau in my response to the treatment.
I won't know if I have actually achieved Complete Response (CR) or even better, stringent Complete Response (sCR) until I have my bone marrow biopsy, which is scheduled for Feb. 15. (Ouch!) If there is more than 5% clonal plasma in the marrow, then I have achieved Very Good Partial Response (VGPR). If there is less than 5% clonal plasma in the marrow, then I have achieved CR. If no clonal plasma at all is present in the marrow, then I have achieved sCR. In any case, I am fortunate to have responded so well to the treatment so far. Kathy is very pleased with my response and she is very excited about how well this MLN9708 has been working for everyone in the clinical trial. She reminded me again about my good fortune to have the initials WO (thanks, Mom and Dad, for naming me William), which allowed me to slip into this trial. Hard to believe!
I learned something new from Dr. Richardson on Wednesday. As you know, my form of MM is classified as IgA Kappa, involving the monoclonal IgA heavy chain gamma globulin coupled with the Kappa light chain. The most common form of MM is IgG. Dr. Richardson informed me that the IgA form is more aggressive than the IgG form, which is another reason he is recommending doing the stem cell transplant early rather than waiting until relapse. That's two strikes I have against me now: an aggressive IgA type of MM and the t(4;14) chromosome abnormality. I guess I need to knock this thing down as hard and fast as I can.
My Autologous Stem Cell Transplant (ASCT) will be performed at Brigham and Women's Hospital (BWH). Muriel told us that they do about 150 transplants a year there. I have had some concerns about another three-letter acronym: TRM (Transplant Related Mortality). Some literature I had read quoted mortality rates of up to 4-5% from complications of the transplant process itself. That seemed a bit high to me. Muriel told us last Wednedsday that the TRM at BWH is about 0.5%. That's comforting!
I now have a complete nominal schedule for the stem cell collection and transplant process, assuming I proceed immediately from collection to transplant. As you know, I have been considering the possibility of deferring the ASCT for a month or so to continue the MLN9708 protocol if I continue to show improvement each cycle. Gretchen is not happy with this approach, feeling that I am trying to over-analyze and over-control this, and that now is the time to just do it. I'm thinking that perhaps she is right. The uncertainty of waiting and seeing is pretty stressful and makes it difficult to do any planning. Muriel also told us on Wednesday that the transplant clinical trial protocol I just signed up for may require me to go directly to transplant after the stem cell collection. That, coupled with the fact that I do appear to have achieved a maximum response to the medication to date, seems to validate just going ahead with it now. So unless Dr. Richardson has a different view, I think there is no reason to delay any further. We will be meeting with Muriel this Wednesday for an information session. Perhaps we will make the final decision then.
Here is my current schedule:
Feb. 15: Pretesting, including pulmonary function, skeletal survey, echocardiogram, bone marrow biopsy
Feb. 28: Pretesting, including Vein check assessment, EKG, Social Worker consult
Mar. 2: Stem cell mobilization with Cytoxan (cyclophosphomide) chemotherapy
Mar. 3: Begin 10-day oral antibiotic Levaquin
Mar. 4: Begin 9-day Neupogen granulocyte-colony stimulating factor (G-CSF) injections (may do at home with Gretchen's help)
Mar. 8: CBC/diff blood test
Mar. 12: Insert Hickman central line catheter
Mar. 13-14: Stem cell collection (out patient at DFCI)
Mar. 17: Admit to BWH
Mar. 18-19: Melphalin chemotherapy
Mar. 20: Stem Cell infusion
Mar. 21-Apr. 4: In-patient recovery (visitors allowed and encouraged..hint hint)
Notice how they have graciously allowed me time for my golf vacation from Feb. 18-25 at Ocean Isle Beach, NC. How accommodating is that?! I damn well intend to enjoy it!