[mikeb]

An introduction and thanks

by mikeb on Sat Mar 16, 2013 9:41 pm

I'm Mike, and I have multiple myeloma. Before I tell you about my case, I have a confession. I've been a lurker on the Myeloma Beacon forum off and on for a couple of years, reading it a lot more since around the start of this year. So, before anything else, I owe all of you who have posted to the forum a lot of thanks. I'm a rookie in the Multiple Myeloma League, trying to learn what I can. I feel like I've gotten lots of good information from so many of you who have taken the time and energy to post to the forum. Thanks a lot! I hope I can maybe help some folks at least a little by contributing in this forum myself, just as you've helped me without even realizing it.

My multiple myeloma marathon started in 2009 with an MGUS diagnosis. Then in 2010 the diagnosis was upgraded to smoldering myeloma, following a second BMB that showed an increase in plasma cells to 10%. We followed the watchful waiting protocol, with more blood tests every three months. During the latter part of 2011 and 2012, my IgA and m-spike numbers consistently increased. Then on Jan. 16 of this year, results from a PET scan showed involvement in my spine, a shoulder blade, and a rib. So I moved into the symptomatic stage, and we started looking at treatment options.

On Jan. 30, I started treatment. The first phase of the treatment is three 3-week cycles of RVD. I started the third cycle a few days ago. I'm already seeing some improvement. My m-spike went down from 2.0 g/dl at the start of treatment to 1.0 at the end of the first cycle to 0.5 at the end of the second cycle. And I'd characterize the side effects that I've had as annoyances more than anything else, but we're keeping a close eye on the tingling in my fingers and toes. One other really good thing is that back and shoulder pain that I'd experienced before beginning treatment (and tried to ignore since I didn't want to admit that multiple myeloma was the root cause) has improved a lot.

I'm in a clinical trial, comparing "traditional" treatment with 3 cycles of RVD, followed by ASCT, followed by 2 more (I think) cycles of RVD, then Revlimid maintenance VS. longer initial RVD treatment (I think 8 cycles) and no ASCT, followed by Revlimid maintenance. I found out recently that I was randomly assigned to the first treatment arm, so I will be getting the ASCT, probably in May if things progress as planned.

I'm trying to take things one step at a time, as much as possible. So far, so good. I continue to work full time, mainly from home. I'm very fortunate to have a job and a boss that make that possible. Also, I'm continuing to run, though shorter and slower than before starting all of this. But it keeps me sane!

When I was in the smoldering myeloma stage, I imagined that the symptomatic stage would be like being in a bullring trying desperately to hold the bull at bay. Over the past 2 months I've learned that that's not exactly the way it is. There's still a bullring, and I'm in it going against the bull, but I'm far from alone in the ring. I have my wife, two grown children and other family members right beside me. I have a network of friends showing their support, each in their unique way. I have doctors and nurses whom I trust completely. And I have the Myeloma Beacon community in the ring too. Thanks!

I know the bull is a monster, but I'm determined take it on with as much courage, strength, and grace as I can muster.

[Multibilly]

Re: An introduction and thanks

by Multibilly on Sun Mar 17, 2013 8:41 am

Wow, that is one huge leap of faith and courage to participate in a trial where one route is with an ASCT and the other is not. I for one, appreciate you being part of this study to try to get some hard, updated stats on the tradeoffs of these two approaches. Thank you, and I hope things turn out extremely well for you!

[Dr. Peter Voorhees]

Re: An introduction and thanks

by Dr. Peter Voorhees on Sun Mar 17, 2013 11:53 pm

The study in which MikeB is participating is an international effort out of France (where it is spearheaded by Dr. Michel Attal of the IFM) and the United States (where it is spearheaded by Dr. Paul Richardson at the Dana Farber Cancer Institute). Numerous myeloma centers in both countries are participating. The study seeks to better understand the role/positioning of high-dose melphalan chemotherapy with stem cell rescue (autologous stem cell transplant) in the context of modern myeloma therapy. The original studies demonstrating longer remissions and survival with high-dose melphalan were done in the days before the advent of Revlimid, Velcade, kyprolis and pomalyst to name a few. This study is re-evaluating the place of high-dose therapy in the era of more effective therapy.

Importantly, patients on this study get stem cells collected regardless of which arm of the study to which they are assigned. As such, all patients will have the ability to undergo high-dose therapy either earlier or later in their course. Importantly, previous studies have not shown a survival difference when transplant was performed early vs. later.

MikeB, this is an extremely important question in myeloma that needs answering, and I thank you for your willingness to help us get to that answer. I am glad to hear that the treatment is working and has been well tolerated thus far.

Good luck and hang in there!

Pete V.

[mikeb]

Re: An introduction and thanks

by mikeb on Mon Mar 18, 2013 9:00 pm

Thanks for the thanks, Multibilly and Dr. Voorhees.

Multibilly, I guess it was somewhat of a leap of faith to participate in the trial without knowing ahead of time which arm I'd be randomly assigned to. But I read what I could beforehand (including here on the Myeloma Beacon) about the different treatment options, I saw the pros and cons with both protocols, and in the end I had no strong preference either way. I also completely trust that my oncologist would have recommended one protocol or the other for me if he thought one was better for me than the other. As Dr. Voorhees said, we don't know the answer at this point. So that's why they are doing the study.

I might also mention that I was motivated to participate in a study like this after reading "The Emperor of All Maladies: A Biography of Cancer" by by Siddhartha Mukherjee a couple of years ago. I highly recommend it for anyone interested in the hard-fought progress that has been made over many years in battling cancer and the work yet to be done.