[Mark11]

Re: Mayo Clinic article on diagnosis & treatment (2016)

by Mark11 on Tue Jan 19, 2016 11:08 am

Great synopsis, MikeB.

I actually do not think your doctor was necessarily more optimistic than what is written in article. The median Overall Survival listed in the article refers to all myeloma patients. The "average" myeloma patient diagnosed at approximately 70 years old. Many of them present with significant co morbidities and have a reduced OS due to the co morbidities at diagnosis. You presented at a young age (by myeloma patient standards) and had the ability to use more intensive therapies. You also enrolled in a trial where you would likely be doing an auto and, as the article mentions, patients that do autos (early or delayed) have a longer OS than patients that do not do autos. You may have presented with standard risk disease, while others present with high risk disease.

As was discussed in another thread, Dr. Rajkumar from Mayo mentions an approximately 10 year median OS for younger, transplant eligible patients. Of course some patients have a much shorter OS, while some can go longer.

"In fact, indefinite maintenance until disease progression virtually ensures continuous lifelong drug therapy for myeloma patients, at a time when median survival for younger standard-risk patients is approaching > 10 years. "

https://myelomabeacon.org/forum/rajkumar-maintenance-therapy-t3211.html

Mark

[mikeb]

Re: Mayo Clinic article on diagnosis & treatment (2016)

by mikeb on Fri Jan 22, 2016 11:30 am

Thanks, Mark11. I remember that article by Dr. Rajkumar and the thread you linked to.

The quote about indefinite maintenance therapy and continuous lifelong drug therapy is an important one. When my doctor and I made the decision this fall to extend my maintenance therapy beyond 2 years, I sort of resigned myself to lifelong drug therapy, assuming I can continue to tolerate the low dose of Revlimid that I'm on. It was not an easy decision, and it's something we revisit to some extent each month when I see him to start the next cycle (or not).

In my case, my FLC k/l ratio ticked up a bit during the 2 months that I was off Revlimid in August and September. That spooked me. It's gone back down and was normal Wednesday (for the first time since April), so it seems the lower dose (5mg per day for 21 days, then 1 week off) is working well for me. And my heart issues that caused the 2 month break seem to be under control. Other side effects are minor and mere annoyances.

So we're staying the course for the time being.

Mike