I just wanted to post the studies referenced in the previous post. As I mentioned in my last post, they are CML studies. Obviously few myeloma patients are going to do an allogeneic transplant before relapse and unfortunately there is no therapy/therapies as successful at treating myeloma as Gleevec (imatinib) is treating CML. I also want to show these studies to look at what long term quality of life is like between a single, targeted therapy that is delivered in a pill continuously as opposed to a non-specific immunotherapy often combined with high doses of chemotherapy that only has to be done once.
A lot of our threads tend to get into one therapy against another. I really want to avoid that here. Posts like Ellen's are really what I am looking for. These are not therapies most myeloma patients will use, so hopefully you can just look at them for the information they provide. These come from patient reports of their quality of life, which I put more stock in than what a doctor thinks the quality of life of patients are. Fortunately for CML patients, they can have a great outcome no matter which therapy they happen to use.
For those not familiar with CML and Gleevec, approximately 80% of CML patients (depending on the study) can start taking Gleevec only and stay in remission for 10 years plus. Gleevec truly makes CML a chronic disease for some CML patients. I think a good way to look at this is what would life with myeloma be like if we had much more successful consolidation and/or maintenance therapies. If you think about it, many of the tradeoffs we make in myeloma are "am I willing to accept side effects of a therapy to stay in remission longer". If you use maintenance drugs or do an upfront auto in myeloma, it will likely increase your progression free survival at the cost of side effects from the therapy. Gleevec or the donor immune system are much more successful at keeping CML patients in remission than any therapy/therapies in myeloma are. Also note few CML patients now do early allogeneic transplants due to the success of Gleevec. I do think these studies show some interesting information on long term quality of life.
These two studies are both from China. The reason I mention it is that the second study refers to increased financial toxicity in the Gleevec group. That may not be applicable to patients in different countries, so I would not put much emphasis on that point, although I am sure that some patients do experience problems with regard to paying for Gleevec in different countries.
"To evaluate and compare the health-related quality of life (HRQOL) of patients with newly diagnosed CML in the first chronic phase (CML-CP1) receiving HLA-identical sibling donor (ISD) hematopoietic SCT (HSCT) or imatinib, a cross-sectional study that was part of a prospective cohort study at the Institute of Hematology, Peking University was performed. A total of 222 patients including 126 and 96 in the imatinib and ISD HSCT groups, respectively, were enrolled. HRQOL was measured using the Medical Outcomes Study 36-Item Short-Form Health Survey. The ISD HSCT group functioned significantly better on the role-physical functioning and mental health subscales, as well as the mental component summary (MCS) than the imatinib group. HRQOL was generally comparable to groups in the young population. Multivariate analysis showed that white blood cell countgreater than or equal to30 × 109/L and plts count greater than or equal to450 × 109/L were the major adverse factors affecting HRQOL in long-term survivors. Imatinib therapy was also an adverse factor affecting the MCS (odds ratio=1.7, P=0.032). Thus, long-term CML-CP1 survivors receiving ISD HSCT can attain desirable HRQOL comparable to or better than that of patients receiving imatinib."
http://www.ncbi.nlm.nih.gov/pubmed/24442252"Abstract To evaluate and compare the long-term medical outcome and health-related quality of life (HRQOL) of patients with CML in chronic phase (CML-CP) who received imatinib or an allogeneic hematopoietic stem cell transplant (allo-HSCT) using retrospective analysis and an embedded cross-sectional study. CML-CP patients who received imatinib or transplantation from January 4, 2004 to October 10, 2011 in the Department of Hematology at Guangdong General Hospital (GGH) were enrolled in this study. A total of 131 patients, including 90 and 41 in the imatinib and allo-HSCT groups, respectively, were enrolled. The two groups including HRQOL investigation were well matched for gender, marital status, employment status, educational background, and Sokal score at diagnosis. There were no significant differences in the five-year EFS, PFS and OS between the two groups. The HRQOL was measured using EORTC QLQ-C30. Those questions include five multi-item function scales (Physical, Role, Emotional, Cognitive and Social Functioning), a combined Global Health Status/QOL scale, and a number of individual items (appetite loss, dyspnea, diarrhea, constipation, sleep disturbances, and financial impact). In terms of HRQOL, with the exception of social functioning (64.9 vs. 77.5, P=0.035), there was no significant difference in many of the HRQOL scores between the imatinib and transplant groups: global HRQOL, role function, physical function, emotional function and cognitive function. However, symptoms including nausea/vomiting (14.8 vs. 3.2, P=0.013), diarrhea (18.4 vs. 2.5, P=0.001), and financial difficulty (56.9 vs. 33.3, P=0.023) more negatively impacted the imatinib group (P<0.05). Persistent cGVHD reduced the HRQOL of the allo-HSCT group, compared with the non-cGVHD and historic cGVHD group. Although imatinib and transplantation have similar long-term medical outcomes, allo-HSCT provides better social function, moderate symptoms, and lower financial burden."
https://ash.confex.com/ash/2015/webprogram/Paper84532.html
There is an interesting side discussion about what constitutes "happiness" that I think gets to a lot of this thread.
