Hello!
I've visited this site numerous times over the past year, but just recently decided to joined. It's coming up on a year since I was diagnosed, and it's been a whirlwind!
Like many of you, my diagnosis came as a complete surprise. Last December I became really sick, and ended up being hospitalized for sepsis. I spent a month in the hospital while doctors tried to determine what was wrong with my immune system, and while I recovered from my stay in the ICU. After the bone marrow biopsy, I was diagnosed with multiple myeloma. I've been categorized as Stage II, with undetermined genetic risk.
Since February, I've been on the Velcade, Revlimid, and dexamethasone (VRD, RVD) treatment regimen, and had a stem cell transplant this summer. I had my 3 month check up recently and was surprised to hear that I was still only at a partial response. My numbers look almost the same as before the stem cell transplant.
This disease is so complex, I feel like I'm constantly 'behind' in my education.
How common is the sort of response to treatment I've had? Should I be considering some sort of additional treatment?
Thank you!
Jessica
Forums
5 posts
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Stadlej - Name: Jessica
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2016
- Age at diagnosis: 39
Re: Partial response after VRD / RVD & stem cell transplant
Hi Jessica,
Welcome to the Forum. Sorry you have a need to be here, though.
In answer to your question, I think a partial or very good partial response after the transplant is fairly common, if that's the level of response you had going into the transplant.
In my case, I had an M-spike of 0.4 g/dl (4 g/l) right before the transplant, and it was the same at 90 days after the transplant. Needless to say, I was pretty bummed by that reading. But I was given 2 more cycles of Revlimid, Velcade, and dexamethasone (RVD) and then started Revlimid maintenance. After a little less than a year of maintenance, I was at stringent complete response (sCR) and minimal residual disease (MRD) gegative. And I've stayed at CR and MRD negative for 2 years since then.
Also lots of people never reach CR, but still manage to do reasonably well long-term anyway.
So don't be too upset at still being at PR. But you might consider maintenance therapy. Of course, whether to do maintenance or not is a big question, with pros and cons on both sides these days.
Best wishes and please keep us posted on how things go.
Mike
Welcome to the Forum. Sorry you have a need to be here, though.
In answer to your question, I think a partial or very good partial response after the transplant is fairly common, if that's the level of response you had going into the transplant.
In my case, I had an M-spike of 0.4 g/dl (4 g/l) right before the transplant, and it was the same at 90 days after the transplant. Needless to say, I was pretty bummed by that reading. But I was given 2 more cycles of Revlimid, Velcade, and dexamethasone (RVD) and then started Revlimid maintenance. After a little less than a year of maintenance, I was at stringent complete response (sCR) and minimal residual disease (MRD) gegative. And I've stayed at CR and MRD negative for 2 years since then.
Also lots of people never reach CR, but still manage to do reasonably well long-term anyway.
So don't be too upset at still being at PR. But you might consider maintenance therapy. Of course, whether to do maintenance or not is a big question, with pros and cons on both sides these days.
Best wishes and please keep us posted on how things go.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Partial response after VRD / RVD & stem cell transplant
I had a stem cell transplant in February 2013. Three months after the transplant, my M-spike was about 0.20 g/dL (2 g/l). It was considered a VGPR (very good partial remission). I did two years Revlimid maintenance and maintained the 0.20 M-spike. At two years, the M-spike started to trend upwards, and my treatment was changed to weekly Velcade (which I've been doing for 62 weeks). Now the M-spike is trending upwards again and my next treatment will be Darzalex.
The reason I am responding to your post is that while I never received a complete remission, I have had excellent quality of life, and that to me means the most. I've read many posts from patients who reach complete remission, but still have bone pain and other side effects that affect quality of life. I consider myself blessed. It's important, of course, to watch those numbers, but feeling good is so important, and you can feel good and do well with a partial remission.
Best wishes.
The reason I am responding to your post is that while I never received a complete remission, I have had excellent quality of life, and that to me means the most. I've read many posts from patients who reach complete remission, but still have bone pain and other side effects that affect quality of life. I consider myself blessed. It's important, of course, to watch those numbers, but feeling good is so important, and you can feel good and do well with a partial remission.
Best wishes.
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elizabethmwm - Name: Elizabeth M
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 8/20/2012
- Age at diagnosis: 57
Re: Partial response after VRD / RVD & stem cell transplant
Hello!
Thank you both for your responses. Clearly I was anxious with those results, so I really appreciate the feedback and perspective you offer!
I will be starting my maintenance treatment next week, which will include Ninlaro, Revlimid, and dexamethasone. So I will keep you posted.
Thanks again and best wishes,
Jessica
Thank you both for your responses. Clearly I was anxious with those results, so I really appreciate the feedback and perspective you offer!
I will be starting my maintenance treatment next week, which will include Ninlaro, Revlimid, and dexamethasone. So I will keep you posted.
Thanks again and best wishes,
Jessica
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Stadlej - Name: Jessica
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2016
- Age at diagnosis: 39
Re: Partial response after VRD / RVD & stem cell transplant
I, like you, did not attain complete response after my stem cell transplant. I have been on Revlimid maintenance for the past 3 months. My M-spike has remained at 0.2 g/dl (2 g/l), but my white blood cell count has not been able to recover and continues to fall. Also, my kappa-lambda free light chain ratio is beginning to climb again. My docs want to switch me to Velcade every other week. They think this will get me where I need to be.
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deeboz - Name: Deedra
- Who do you know with myeloma?: me
- When were you/they diagnosed?: March 2015
- Age at diagnosis: 52
5 posts
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