My doctor is considering having me go on Ninlaro maintenance. What is the rationale for the treatment? Why might it be better, in terms of efficacy or side effects, than other maintenance options, or no maintenance at all?
I am 68 days post autologous stem cell transplant (ASCT) and still have an M-spike of 0.1 g/dL (1 g/L). It was 0.2 g/dL prior to the transplant and after 4 cycles of Revlimid, Velcade, and dexamethasone (RVD) and 4 cycles of Kyprolis, Revlimid, and dexamethasone (KRd).
I'm considered average risk and am having a post-transplant bone marrow biopsy next week.
My doctor is recommending Ninlaro if my insurance company will approve it, or Velcade every other week for 2 years if the Ninlaro is not approved. The doctor is a specialist at UCSF, and I trust his opinion, but am wondering if anybody has any thoughts on this plan.
Forums
6 posts
• Page 1 of 1
-
loveparis - Name: loveparis
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June, 2015
- Age at diagnosis: 61
Re: Ninlaro maintenance therapy
How did you react to Velcade (bortezomib) the first time around? The reason I ask is because Ninarlo (ixaxomib) and Velcade are chemically similar, but not exactly the same.
-
Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Ninlaro maintenance therapy
Loveparis,
UCSF is a leading myeloma treatment center with some great multiple myeloma specialists.
Did your doctor give you a specific reason why he would prefer using a proteasome inhibitor such as Ninlaro or Velcade as opposed to an IMiD such as Revlimid?
You might want to review this debate on the two different approaches.
https://myelomabeacon.org/forum/nice-debate-on-pis-versus-imids-for-maintenance-t6489.html
UCSF is a leading myeloma treatment center with some great multiple myeloma specialists.
Did your doctor give you a specific reason why he would prefer using a proteasome inhibitor such as Ninlaro or Velcade as opposed to an IMiD such as Revlimid?
You might want to review this debate on the two different approaches.
https://myelomabeacon.org/forum/nice-debate-on-pis-versus-imids-for-maintenance-t6489.html
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Ninlaro maintenance therapy
Thanks for your thoughts and questions.
I discussed the maintenance earlier with my doctor and was really concerned about the Revlimid and the chance of secondary malignancies. He did say that I was too late to get into a study using Ninlaro vs. Revlimid and dexamethasone, but it is underway now. He also quoted a study in Belgium I think that was very small and had a few flaws but had excellent results using Ninlaro only. I do understand his comment that there is not enough data out there yet on this, but in his opinion this would be a good choice for me.
My 2 goals with maintenance are to avoid Revlimid if at all possible and have the best quality of life. That might mean I could take an oral medication and follow up with intermittent labs. No steroids is also a plus for me. During induction I had 4 cycles with Velcade and had a good initial response but then slowed down and was switched to Kyprolis. I had 4 cycles of each and finally got the M-protein from 3.1 to 0.2 g/dl (31 to 2 g/l) prior to transplant. Since transplant it has dropped to 0.1 g/dl (1 g/l) (at day 60, last measurement).
My bone marrow biopsy just prior to the autologous stem cell transplant looked great, < 5% plasma cells (down from 30-40%) and essentially no other abnormalities. I did have monosomy 13 and t11:14 at diagnosis. My doctor is not recommending consolidation chemo; he thinks it would not be a benefit and the numbers still might go down.
I am curious if there is anyone outside a trial using Ninlaro for maintenance and if they have had any issues, including on getting approval from insurance. I will review the information you suggested and see if that brings up any more questions or concerns. This is all new in the myeloma world, and I know there are no guarantees!
I discussed the maintenance earlier with my doctor and was really concerned about the Revlimid and the chance of secondary malignancies. He did say that I was too late to get into a study using Ninlaro vs. Revlimid and dexamethasone, but it is underway now. He also quoted a study in Belgium I think that was very small and had a few flaws but had excellent results using Ninlaro only. I do understand his comment that there is not enough data out there yet on this, but in his opinion this would be a good choice for me.
My 2 goals with maintenance are to avoid Revlimid if at all possible and have the best quality of life. That might mean I could take an oral medication and follow up with intermittent labs. No steroids is also a plus for me. During induction I had 4 cycles with Velcade and had a good initial response but then slowed down and was switched to Kyprolis. I had 4 cycles of each and finally got the M-protein from 3.1 to 0.2 g/dl (31 to 2 g/l) prior to transplant. Since transplant it has dropped to 0.1 g/dl (1 g/l) (at day 60, last measurement).
My bone marrow biopsy just prior to the autologous stem cell transplant looked great, < 5% plasma cells (down from 30-40%) and essentially no other abnormalities. I did have monosomy 13 and t11:14 at diagnosis. My doctor is not recommending consolidation chemo; he thinks it would not be a benefit and the numbers still might go down.
I am curious if there is anyone outside a trial using Ninlaro for maintenance and if they have had any issues, including on getting approval from insurance. I will review the information you suggested and see if that brings up any more questions or concerns. This is all new in the myeloma world, and I know there are no guarantees!
-
loveparis - Name: loveparis
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June, 2015
- Age at diagnosis: 61
Re: Ninlaro maintenance therapy
I just started a clinical trial through Fred Hutchinson Seattle having taken my first dose of Ninlaro yesterday, which I will be doing for two cycles, then take on two cycles of Revlimid.
No reactions so far, but I also seemed to handle Velcade well. I, too, built a resistance to Velcade, so it will see if alternating drugs bi-monthly will lessen resistance and chance of secondary cancer.
No reactions so far, but I also seemed to handle Velcade well. I, too, built a resistance to Velcade, so it will see if alternating drugs bi-monthly will lessen resistance and chance of secondary cancer.
-
StandingTall - Who do you know with myeloma?: Me! yay!!
- When were you/they diagnosed?: Sept. 2013
- Age at diagnosis: 39
Re: Ninlaro maintenance therapy
Ninlaro seems to work well for lambda based myeloma if you’re not refractory to Velcade. I’m in my 6th cycle of a weekly dose of 4 mg, and my lambda / beta numbers have continued to drop without having any transplants since the time I have been diagnosed with stage 3 lambda myeloma one and a half years ago. I missed 3 weeks of treatment and had a minor M-spike, so I expect my Ninlaro maintenance will probably be a weekly dose of 3 mg.
Taking a 4 mg Ninlaro pill with 1 Zofran (ondansetron) pill for nausea late on Thursday night has been the easiest treatment I have ever had (compared to Velcade, Revlimid, or Kyprolis), and the only side effects I have are a slight sunburn sensation on my face and lips with some minor pain (peripheral neuropathy?) in the thighs that goes away. I still have a slight headachy / sick feeling the day after and then again 4-5 day after the pill, but it is very tolerable.
I take my 40 mg of dex late Friday night with some bread or tortilla. The dex for me takes about 6+ hours to take effect, so by Saturday morning and throughout the weekend I feel pretty energized without any bone pain or sick feeling.
The only time I go to the hospital now is once per month to get my pills and do a blood test. I think I will be able to live like this until CAR-T cell immunology or cord blood therapy is available as a cure.
Taking a 4 mg Ninlaro pill with 1 Zofran (ondansetron) pill for nausea late on Thursday night has been the easiest treatment I have ever had (compared to Velcade, Revlimid, or Kyprolis), and the only side effects I have are a slight sunburn sensation on my face and lips with some minor pain (peripheral neuropathy?) in the thighs that goes away. I still have a slight headachy / sick feeling the day after and then again 4-5 day after the pill, but it is very tolerable.
I take my 40 mg of dex late Friday night with some bread or tortilla. The dex for me takes about 6+ hours to take effect, so by Saturday morning and throughout the weekend I feel pretty energized without any bone pain or sick feeling.
The only time I go to the hospital now is once per month to get my pills and do a blood test. I think I will be able to live like this until CAR-T cell immunology or cord blood therapy is available as a cure.
-
Bob_D - Name: Bob_D
- Who do you know with myeloma?: me
- When were you/they diagnosed?: March 2015
- Age at diagnosis: 59
6 posts
• Page 1 of 1
Return to Treatments & Side Effects