My multiple myeloma diagnosis came late October, 2015 during a bone biopsy of my lower back. I was battling a few medical problems, including severe back pain, chest [sternum] pain, fatigue, and flu-like symptoms that had me down. These issues went on over a year with many visits to my GP and back doctor.
I was diagnosed with high risk, aggressive-type multiple myeloma with p17 deletion. We started treatment at Tallahassee Memorial Cancer Center. My induction therapy was Revlimid, Velcade, and dexamethasone (RVD), along with Zometa.
I followed up with Moffit in Tampa. I am joining a clinical trial and will get an allogeneic (donor) stem cell transplant and Ninlaro (ixazomib), Revlimid, and dexamethasone as maintenance.
Unfortunately, the clinical trial was put on hold just before my transplant on April 1, 2016, and we are on hold continuing with treatment until it opens back up.
I responded well to treatment and was feeling strong enough to work for a few months, although after this much treatment, work consists of little more than trying to keep up with my personal projects a few days at the end of my week off, all before noon, then it's back to the recliner.
Forums
6 posts
• Page 1 of 1
-
Rick B - Name: Rick Brewer
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Oct.2015
- Age at diagnosis: 59
Re: Awaiting an allogeneic transplant after RVD induction
Hi Rick B.,
Sounds a lot like my story. Just out of curiosity, will your insurance company pay for the allo if it is not on clinical trial? I was not in a clinical trial when I did mine in first complete response back in 2011. My treatment plan was similar to yours in that the original plan was to do induction to complete response and do the transplant. My insurance company only paid for a tandem auto - allo, so that is what I did (i.e., an autologous (own)stem cell transplant, followed not long after by an allogeneic stem cell transplant). I have used no therapy since my allogeneic transplant, and I remain in remission with no signs of disease more than 5 years later.
The reason I bring this up is that the factor that appears to be the most predictive of having a successful outcome for an allogeneic transplant is doing it in first complete response as opposed to the specifics of how you do the transplant. While it is great that you are looking to go into a clinical trial and help advance the therapy for other patients, you do need to look out for yourself as well. It is difficult to get a high-risk myeloma patient back into a second remission, so it can be difficult to find a center that will do an allogeneic transplant on a patient that is not in remission.
While I know allos are viewed as experimental by "myeloma thought leaders" and patients in forums that never did one, the reality is they have been curing blood cancer patients since the 1970's and I have attended some fairly large gatherings of long-term survivors.
Good luck moving forward.
Mark
Sounds a lot like my story. Just out of curiosity, will your insurance company pay for the allo if it is not on clinical trial? I was not in a clinical trial when I did mine in first complete response back in 2011. My treatment plan was similar to yours in that the original plan was to do induction to complete response and do the transplant. My insurance company only paid for a tandem auto - allo, so that is what I did (i.e., an autologous (own)stem cell transplant, followed not long after by an allogeneic stem cell transplant). I have used no therapy since my allogeneic transplant, and I remain in remission with no signs of disease more than 5 years later.
The reason I bring this up is that the factor that appears to be the most predictive of having a successful outcome for an allogeneic transplant is doing it in first complete response as opposed to the specifics of how you do the transplant. While it is great that you are looking to go into a clinical trial and help advance the therapy for other patients, you do need to look out for yourself as well. It is difficult to get a high-risk myeloma patient back into a second remission, so it can be difficult to find a center that will do an allogeneic transplant on a patient that is not in remission.
While I know allos are viewed as experimental by "myeloma thought leaders" and patients in forums that never did one, the reality is they have been curing blood cancer patients since the 1970's and I have attended some fairly large gatherings of long-term survivors.
Good luck moving forward.
Mark
-
Mark11
Re: Awaiting an allogeneic transplant after RVD induction
Hi Mark,
Thanks for your reply. You're the first person I have talked with other than my doctors about my disease.
To start with, I left out a few things, my memory has nose dived. I have p13 and p17 chromosome deletions along with lesions in my spine, top to bottom, in my shoulder and ribs as well. This has my doctors saying I won't get a total remission but I have achieved a VGPR and that gets me eligible for an allogeneic transplant.
We hope to knock it out with this first strike, although it's a high-risk / high-reward situation. Any and all suggestions are appreciated, and congrats on your 5-year mark.
Thanks for your reply. You're the first person I have talked with other than my doctors about my disease.
To start with, I left out a few things, my memory has nose dived. I have p13 and p17 chromosome deletions along with lesions in my spine, top to bottom, in my shoulder and ribs as well. This has my doctors saying I won't get a total remission but I have achieved a VGPR and that gets me eligible for an allogeneic transplant.
We hope to knock it out with this first strike, although it's a high-risk / high-reward situation. Any and all suggestions are appreciated, and congrats on your 5-year mark.
-
Rick B - Name: Rick Brewer
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Oct.2015
- Age at diagnosis: 59
Re: Awaiting an allogeneic transplant after RVD induction
Hi Mark;
I am not sure of your ability to get to Maryland, or even if it's a possibility with your insurance, but I do know that University of Maryland Medical Center is indeed conducting a trial with Ninlaro, Revlimid, and dex. If you are interested I can get you their contact information.
Kathleen
I am not sure of your ability to get to Maryland, or even if it's a possibility with your insurance, but I do know that University of Maryland Medical Center is indeed conducting a trial with Ninlaro, Revlimid, and dex. If you are interested I can get you their contact information.
Kathleen
-
kshornb - Name: kshornber
- Who do you know with myeloma?: self
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 52
Re: Awaiting an allogeneic transplant after RVD induction
Just a fast update on my journey. My allogeneic transplant was put on hold for some time (clinical trial issues) until we were approved for the same treatment outside the trial.
So here we are 13 months after diagnosis getting a transplant at Moffit. We are Day 5 post transplant. White count 0.53, platelets 57, hemoglobin 11.3. So far nausea controlled.
Should get out of hospital around December 26, and then to apartment for about 3 months.
So here we are 13 months after diagnosis getting a transplant at Moffit. We are Day 5 post transplant. White count 0.53, platelets 57, hemoglobin 11.3. So far nausea controlled.
Should get out of hospital around December 26, and then to apartment for about 3 months.
-
Rick B - Name: Rick Brewer
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Oct.2015
- Age at diagnosis: 59
Re: Awaiting an allogeneic transplant after RVD induction
Hi Rick,
Sending positive thoughts that things are progressing well and that you are out of the hospital.
Mark
Sending positive thoughts that things are progressing well and that you are out of the hospital.
Mark
-
Mark11
6 posts
• Page 1 of 1
Return to Member Introductions / Personal Stories