Hello Everyone!
My name is Erin and I was diagnosed with multiple myeloma on Christmas Eve 2014 after a routine physical that showed I was anemic. I am a very healthy, energetic 56 year old and I didn't have any other symptoms at the time of diagnosis and still don't to this day. After seeking a second opinion at the City of Hope, I began my induction therapy at the beginning of February. I had 6 rounds of Revlimid, Velcade, and dexamethasone (RVD), handled the treatment relatively well and achieved a very good partial response (VGPR) prior to my stem cell transplant (SCT) on August 24th. By Day +70 I had achieved a complete response (CR).
Next week I am scheduled to begin my next phase of treatment and have some reservations about which treatment I should choose, thus my questions to all of you wonderful people here in the forum. In addition to my questions, some additional insight into my myeloma is that when I had my first bone marrow biopsy back in December, they were unable to do any FISH studies as there was insufficient amount of marrow to do that testing. Therefore, I have no idea what chromosomal issues I may have.
My questions about the the next phase of treatment lies with the choice between Revlimid and Velcade. My doctor explained both options and the side effects I may suffer with them. The thing that really worried me about choosing Revlimid was with secondary cancers. In my research, I have discovered that patients who have had induction therapy with Revlimid and melphalan and/or patients who have had the one-time high dose of melphalan prior to SCT (which is true in my case) have a higher risk of developing these cancers.
What are your thoughts on this and how much weight did you put on these risk factors when making your decision to use Revlimid for your consolidation / maintenance therapy?
My question with regard to the Velcade is about neuropathy. Although I have never experienced it with my induction therapy, 5 days ago I began to have slight tingling in my hands at night as if they had fallen asleep, and have had some very slight muscle pain in my calve muscles. I feel that the slight neuropathy that I may be feeling is from the high dose melphalan rather than from the induction therapy of Velcade, as it has been almost 4 months since I had my last treatment.
Is this correct? Would this be something that should make me veer away from the Velcade for this next round of treatment?
Although I know that everyone is different and not all treatment plans work the same for any given patient, I would just love to hear your insight to my thoughts and questions as I move towards this next round of treatment.
Thank you all in advance for any and all suggestions you send my way! I value all of your opinions as they have guided me and helped me through this last year of unknowns!
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Erin - Name: Erin
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: December 2014
- Age at diagnosis: 56
Re: Revlimid or Velcade for maintenance therapy?
Hello Erin:
I understand that the Velcade maintenance is 2 full-dose treatments a month, compared with induction, which is 6 full dose treatments (depending on scheduling). In theory, the peripheral neuropathy (PN) should be less, or at least no more, on the lower dose maintenance. On the other hand, you might be seeing a cumulative effect and, secondly, your immune system, a major system in your body, is "reset" by the ASCT.
Velcade has been shown in studies to have good activity for some bad FISH results, such as t(4,14). You should understand with your doctor (hopefully a multiple myeloma specialist) why Velcade is being used, because in most cases, doctors prefer Revlimid. Revlimid, being orally administered, is at least better logistically. I understand that there has not been any head-to-head study comparing Revlimid maintenance to Velcade maintenance for the overall population, but there is good data to use Velcade for the adverse cytogenetics.
Two quick points on peripheral neuropathy that some on the Beacon have reported as helpful. First, for low level PN, applying Palmer's cocoa butter has helped some. It relieves PN as it sets in, and might help to apply before it sets in to reduce the frequency and depth of PN episodes. Second, physical therapy, with stretching and exercises for the feet and the hands, could be helpful. As I had mentioned before, in my wife's case, the physical therapy after the ASCT made a huge difference in terms of accelerating her recovery.
Good luck.
I understand that the Velcade maintenance is 2 full-dose treatments a month, compared with induction, which is 6 full dose treatments (depending on scheduling). In theory, the peripheral neuropathy (PN) should be less, or at least no more, on the lower dose maintenance. On the other hand, you might be seeing a cumulative effect and, secondly, your immune system, a major system in your body, is "reset" by the ASCT.
Velcade has been shown in studies to have good activity for some bad FISH results, such as t(4,14). You should understand with your doctor (hopefully a multiple myeloma specialist) why Velcade is being used, because in most cases, doctors prefer Revlimid. Revlimid, being orally administered, is at least better logistically. I understand that there has not been any head-to-head study comparing Revlimid maintenance to Velcade maintenance for the overall population, but there is good data to use Velcade for the adverse cytogenetics.
Two quick points on peripheral neuropathy that some on the Beacon have reported as helpful. First, for low level PN, applying Palmer's cocoa butter has helped some. It relieves PN as it sets in, and might help to apply before it sets in to reduce the frequency and depth of PN episodes. Second, physical therapy, with stretching and exercises for the feet and the hands, could be helpful. As I had mentioned before, in my wife's case, the physical therapy after the ASCT made a huge difference in terms of accelerating her recovery.
Good luck.
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JPC - Name: JPC
Re: Revlimid or Velcade for maintenance therapy?
Maintenance is a tough decision, especially when you think about the typical side effects of the drugs (Revlimid or Velcade), and more so when you hear things like "increased risk for second / subsequent primary malignancies (SPM)s." However, maintenance is not the only place in which second primary malignancies are noted. The high-dose melphalan (HDM), with autologous stem cell transplantation (ASCT), has long been know to increase a patient's risk for myelodysplastic syndromes (MDS) / acute myeloid leukemia (AML) (bone marrow cancers). We just need to make informed decisions.
I have attached a nice comparison by Dr. McCarthy published in the Journal of the NCCN in 2013 and updated some of the good stuff below, drawing on Holstein et al, ASCO 2015 (abstract, poster) and IMW.
I generally have the discussion with patients balancing the pluses and minuses (benefit vs. the acute and chronic risk) and quality of life. I feel that the benefit outweighs the risk of SPMs for most, if not all, patients, although we cannot make multiple myeloma go away forever.
However, those with standard risk and a stringent complete response (sCR) post-transplant I feel comfortable observing, if they choose to do so. High-risk patients I like to have on Velcade +/- Revlimid (if they have residual disease). The subcutaneous dosing dosing of Velcade has markedly improved its tolerability and I use it frequently.
In your case, we do not know the molecular risk – that is, what your chromosomal abnormalities are). And your are starting to have peripheral neuropathy (PN) flare, which I see with some regularity post-HDM-ASCT; I am not sure if it is a little antagonism to subclinical Velcade-induced PN or not, but that is what I blame it on.
For someone in your setting, the data and your described PN suggests, to me, maintenance Revlimid. There is better and more data demonstrating the benefits of Revlimid over placebo. And your "data" does not suggest that we use Velcade (as above). Recall quality of life drives the dosing.
Like most of the decisions you make with multiple myeloma, it is risk/benefit and the reality of having multiple myeloma. Some benefits are pretty secure, others remains controversial (unresolved because of differing results on clinical trials).
Looking at the two key Revlimid maintenance trials in the post-HDM ASCT setting,
IFM 0502 and CALGB100104:
Good things:
Increased time of disease control: yes (IFM) and yes (CALGB)
Bad things:
Second primary malignancy (SPM) rates in both trials were 2.6-3 fold higher among the patients receiving Revlimid maintenance compared to those who received placebo (~absolute 5% increase in SPM rate, Revlimid patients vs. placebo patients)
Reality:
Myeloma progression rates will always be near 100.
I have attached a nice comparison by Dr. McCarthy published in the Journal of the NCCN in 2013 and updated some of the good stuff below, drawing on Holstein et al, ASCO 2015 (abstract, poster) and IMW.
I generally have the discussion with patients balancing the pluses and minuses (benefit vs. the acute and chronic risk) and quality of life. I feel that the benefit outweighs the risk of SPMs for most, if not all, patients, although we cannot make multiple myeloma go away forever.
However, those with standard risk and a stringent complete response (sCR) post-transplant I feel comfortable observing, if they choose to do so. High-risk patients I like to have on Velcade +/- Revlimid (if they have residual disease). The subcutaneous dosing dosing of Velcade has markedly improved its tolerability and I use it frequently.
In your case, we do not know the molecular risk – that is, what your chromosomal abnormalities are). And your are starting to have peripheral neuropathy (PN) flare, which I see with some regularity post-HDM-ASCT; I am not sure if it is a little antagonism to subclinical Velcade-induced PN or not, but that is what I blame it on.
For someone in your setting, the data and your described PN suggests, to me, maintenance Revlimid. There is better and more data demonstrating the benefits of Revlimid over placebo. And your "data" does not suggest that we use Velcade (as above). Recall quality of life drives the dosing.
Like most of the decisions you make with multiple myeloma, it is risk/benefit and the reality of having multiple myeloma. Some benefits are pretty secure, others remains controversial (unresolved because of differing results on clinical trials).
Looking at the two key Revlimid maintenance trials in the post-HDM ASCT setting,
IFM 0502 and CALGB100104:
Good things:
Increased time of disease control: yes (IFM) and yes (CALGB)
- IFM: progression free survival 41 months (with Revlimid) vs 23 months (without Revlimid)
- CALBG: time to progression 53 months (with Revlimid) vs. 26 months (without R) (updated at ASCO 2015)
- IFM: 4-year overall survival 73% vs 75% (same)
- CALBG with 65-month follow-up - median overall survival not reached vs. 76 months.
Bad things:
Second primary malignancy (SPM) rates in both trials were 2.6-3 fold higher among the patients receiving Revlimid maintenance compared to those who received placebo (~absolute 5% increase in SPM rate, Revlimid patients vs. placebo patients)
Reality:
Myeloma progression rates will always be near 100.
- Attachments
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McCarthy Maintenance in MM post ASCT JNCCN-2013.pdf- (1.56 MiB) Downloaded 214 times
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Revlimid or Velcade for maintenance therapy?
Please remember that none of this is written in stone. If your choice leads to a diminished quality of life, you can always change. I have been on 5 mg Revlimid 21 days on / 7 days off for six years since ASCT and remain in CR. I do have a few side effects (occasional diarrhea, occasional night time leg cramps); however, I deal with them.
I am newly on Medicare, and my monthly co-pay for the Revlimid is nearly $500.00 as I don't qualify for the assistance programs. Before I went on to Medicare, my private insurance monthly co-pay was only $35.00. The intravenous Velcade I received during induction gave me fairly severe neuropathy which remains today.
Best Wishes
I am newly on Medicare, and my monthly co-pay for the Revlimid is nearly $500.00 as I don't qualify for the assistance programs. Before I went on to Medicare, my private insurance monthly co-pay was only $35.00. The intravenous Velcade I received during induction gave me fairly severe neuropathy which remains today.
Best Wishes
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Yellow Rose
Re: Revlimid or Velcade for maintenance therapy?
Hi!
My name is Gary. I had an auto stem cell transplant at MD Anderson on August 4, 2015 with complete remission. I was on busulfan and melphalan prior to transplant. I was asked to be part of a clinical trial with Revlimid (10 mg) and elotuzumab (not yet FDA approved). The trial is exciting and promising. 7 months ago, this did not exist. My thoughts are anything I can do to increase the time between reoccurrences is positive. I'm 49 and willing to try cutting edge technology / medicine.
So, for Revlimid, yes, I would recommend it as a maintenance drug. Everything has side effects. In my opinion, the rewards outweigh the risk. Good luck!!
My name is Gary. I had an auto stem cell transplant at MD Anderson on August 4, 2015 with complete remission. I was on busulfan and melphalan prior to transplant. I was asked to be part of a clinical trial with Revlimid (10 mg) and elotuzumab (not yet FDA approved). The trial is exciting and promising. 7 months ago, this did not exist. My thoughts are anything I can do to increase the time between reoccurrences is positive. I'm 49 and willing to try cutting edge technology / medicine.
So, for Revlimid, yes, I would recommend it as a maintenance drug. Everything has side effects. In my opinion, the rewards outweigh the risk. Good luck!!
Re: Revlimid or Velcade for maintenance therapy?
Hi Garyrudman,
May I ask you if you don't mind, when did you diagnosed and when did you start your induction? How many rounds of busulfan and melphalan you have?
I understand you've done your ASCT on Aug. 2015.
What is your present M- component? Are you on Revlimid and elotuzumab? Is there any plan for next ASCT?
Thank you and good luck.
May I ask you if you don't mind, when did you diagnosed and when did you start your induction? How many rounds of busulfan and melphalan you have?
I understand you've done your ASCT on Aug. 2015.
What is your present M- component? Are you on Revlimid and elotuzumab? Is there any plan for next ASCT?
Thank you and good luck.
Re: Revlimid or Velcade for maintenance therapy?
Erin - thank you for sharing your diagnosis, treatment and upcoming decision making. Good luck with your decision.
Dr. Shain - thank you for a very clear explanation regarding maintenance chemotherapy. We will have to make the same decision as Erin on December 1.
Gary - congratulations on your complete response. My husband had his autologous stem cell transplant on August 31, 2015 also at MD Anderson. Therefore he is D+84 today and he has his D+90 checkup next week. I have been very interested in the clinical trial of which you speak - elotuzumab. My husband's chromosomal abnormalities are rare and his myeloma is considered agrressive and therefore he is high risk. At this point, we do not know if he will qualify for the clinical trial, but we hope to find out soon.
Good luck with your treatment, and I look forward to hearing about your progress on the clinical trial.
Dr. Shain - thank you for a very clear explanation regarding maintenance chemotherapy. We will have to make the same decision as Erin on December 1.
Gary - congratulations on your complete response. My husband had his autologous stem cell transplant on August 31, 2015 also at MD Anderson. Therefore he is D+84 today and he has his D+90 checkup next week. I have been very interested in the clinical trial of which you speak - elotuzumab. My husband's chromosomal abnormalities are rare and his myeloma is considered agrressive and therefore he is high risk. At this point, we do not know if he will qualify for the clinical trial, but we hope to find out soon.
Good luck with your treatment, and I look forward to hearing about your progress on the clinical trial.
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PattyB - Name: PattyB
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 64
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