[Swank]

Kirk, diagnosed in 2016 with multiple myeloma

by Swank on Tue Jun 06, 2017 6:26 am

Hello to all!

It was a broken clavicle that finally led to my diagnosis of multiple myeloma in March of 2016. Looking back to the year or so before that, there were two different broken rib events and a fair amount of back and muscle pain along with being tired a lot. Most of this I told myself was me doing too much at times for my age. The broken clavicle changed the game. It set off testing with results that led me to an oncologist.

My oncologist explained that response to treatment is more important than what stage I was at. Having said that, I found later on that I'm considered high risk with 17p deletion. From the very start he promoted a stem cell transplant.

While waiting on an appointment with a hematologist, treatment was started. The plan was Velcade, Revlimid, and dexamethasone. Unfortunately, I had a bad reaction with Revlimid on two different occasions. The decision was made to continue without the Revlimid.

During this I met with a hematologist who encouraged a stem cell transplant, and a second opinion at the Mayo Clinic confirmed things. With a transplant as a goal, treatment was changed,. I started with Kyprolis, Pomalyst, and dex I responded well to this, but the side effects were kind of tough. In the middle of my 4th cycle I got a call: stop, it's transplant time.

I started the growth factor shots early last November followed by the harvest of the stem cells. That all went well, but the shots really tired me out. On November 17th of last year I checked in to the hospital and received my dose of melphalan followed with the stem cells on the 18th. I spent 16 days in the hospital and am glad I chose to do it as inpatient.

Starting about 90 days after transplant, I did two more cycles of the Kyprolis, Pomalyst, and dex. As I write this, I'm in the middle of the second cycle of six planned for maintenance consisting 2 mg of Pomalyst for 21 days and weekly dex. The thinking behind this was even though I'm considered to be in remission at this time, we know a relapse is likely in my future. My doctor was clear that it was my choice to make. I felt that I had come too far to stop now.

I guess that's the short version of what brings me to this site.








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[Ron Harvot]

Re: Kirk, diagnosed in 2016 with multiple myeloma

by Ron Harvot on Thu Jun 08, 2017 6:02 pm

Kirk,

Sounds like you had an excellent initial response and the transplant worked. Unfortunately, as I am sure you are well aware, multiple myeloma is not currently curable (with some limited exceptions). So we all are likely to relapse and with 17p deletion you are at a higher risk of an earlier relapse. However, just in the last 2 years there has been great advancement in new novel agents coming out that are very effective and offer great hope that multiple myeloma can become a chronic rather than fatal disorder.

Hope that you stay in remission for a long time!