Second, only 12% of patients in the US do an auto as part of their upfront therapy and around 20% at any time:
"Autologous stem cell transplants in the United States" (forum thread started Nov 11, 2015)
How does it make you a "trailblazer" to do what 88% of all patients do? How is it still the "preferred treatment among most experts" if so few patients do one?
Third, in my opinion the discussions about Pat are in very poor taste and would seem to be inaccurate. Patients with multiple myeloma die - even those who never do transplants. Pat clearly stated in posts that he was told by his doctor at Mayo he likely would not be alive for his 2016 beach party if he continued only using novel agents. I fail to see how Pat had a "tragic experience with autologous transplants." You typically see that transplant-eligible myeloma patients have a 7-10 year median overall survival expectancy. Pat fell right in that area. He treated like most patients, therefore he had the outcome most transplant-eligible patients have. Honestly I think a lot of posters here have a hard time accepting their diagnosis given some of the posts here in this thread and in others. Unfortunately, years 7-10 come for myeloma patients.
Fourth, there are peer reviewed studies about the quality of life of patients who do autos. Here is one from 2009, prior to maintenance being common.
In the setting of autologous HCT [haematopoietic cell transplantation], initial impairments in overall QOL are noted at baseline compared to reference population data, probably reflecting the effects of prior therapy and anticipation of the arduous therapy involved in autologous HCT. Not surprisingly, longitudinal studies demonstrate an initial worsening in overall QOL following transplant, with nadir reached at 10-14 days after HCT. Beyond this, there is rapid progressive improvement, with return to baseline reported by 3 months to 1 year. By one year after autologous HCT, the proportion of survivors below the 10th percentile of a healthy normative population in overall QOL decreased from 43% to 20%. In addition, 88% of survivors after autologous HCT at 1 year endorsed their overall QOL as ‘above average to excellent’. However, there does appear to be a more persistent decrement in overall QOL after autologous HCT in comparison to normative population data at 36 months. Thus, it appears that deficits in overall QOL associated with autologous transplant are transient. Longer-term deficits in overall QOL observed in patients relative to individuals without cancer may reflect the cumulative burden of relapsed disease and multiple treatments rather than specific effects of autologous transplant per se.
Source:
J Pidala et al, "Health-related quality of life following haematopoietic cell transplantation: patient education, evaluation and intervention," British Journal of Haematology, Nov 16, 2009 (full text of article)
To the original question posed in the thread, I was not planning on doing an auto stem cell transplant but had to do one prior to my allo (donor) stem cell transplant for insurance purposes. Since an auto was part of the therapy that put me in a myeloma drug-free sustained stringent complete response / minimal residual disease-negative (MRD-) state for 4 and a half years with excellent quality of life, my answer is yes I would do it again.
Aggressive upfront therapy is for patients who think long term. If you are more concerned about the short-term, less aggressive therapy is a better choice for you.
