I raised this issue when I first started posting on this forum and now feel that I will give it another try. Quite a few posters have indicated that they have been in remission for more than five or six years, which is fantastic for them and most encouraging for all of us. However, only occasionally do they reveal whether they are standard-risk, intermediate-risk or high-risk patients. I have read that nearly 80% of diagnosed myeloma patients fall into the category of low or standard risk. Clearly, the prospects for these patients must be much better than for intermediate- and high-risk patients.
One of the posters, in a response which I did appreciate, wrote that many long-time survivors who write in the forum do not really know what their cytogenetics are and therefore do not know what their risk status is. If there are some long time intermediate- or high-risk myeloma patients out there and you DO know your risk status, it would be nice to hear about your experience, in particular, if you have made it in remission beyond five or six years.
I myself, an older patient, am intermediate risk with t(4;14) and del13. Except for the diagnosed myeloma, I was in excellent health at the time I started treatment and was actually borderline smoldering myeloma. My treatment has been quite effective up to now. I am contemplating a stem cell transplant for the near future. My specialist, if I understood her correctly, thinks that, with a stem cell transplant, I will remain in remission for about twelve to eighteen months, not a pleasant prospect given all the difficulties that might arise during and after a transplant and the time that it takes to recover. She, of course, reminds me that every patient is different, etc.
So, if there are posters out there who are NOT standard risk and have been living with myeloma for a good number of years, I would be glad to hear from you. If you have gone through the transplant procedure more recently and can tell me how long you have been in remission since your transplant, that, too, will be helpful. Somehow I feel that this kind of information will assist me in making up my mind whether to pursue a transplant.
Many thanks to all of you who post. Your information is so useful, beyond belief!
Forums
Re: What's your intermediate & high-risk myeloma experience?
I'm not a myeloma patient, but my mother is. She was diagnosed back in January 2008 at the age of 54. For whatever reason, she wasn't able to do a FISH study at the time, but they were able to pick up del 13 outside of FISH. She did about five or six rounds of CyBorD (cyclophosphamide, Velcade, dexamethasone), followed by an autologous stem cell transplant in June 2008.
Five and a half years of drug-free complete remission, she relapsed in winter 2014 with an extramedullary plasmacytoma. They just did FISH last month. She, like you, has the 4;14 translocation (her doctor thinks that was there since the beginning). She has also picked up a 1q gain.
She just started Kyprolis-Pomalyst-dex and will be doing a second transplant in a month or two. We are hoping that she will have another long remission. I strongly feel that in 5.5 more years, there will be lots of new, effective treatments – so the game will be different then for high-risk patients.
As a note, my mother's doctor said this time there will be maintenance post transplant.
That's our high risk story! Hope it helps.
Five and a half years of drug-free complete remission, she relapsed in winter 2014 with an extramedullary plasmacytoma. They just did FISH last month. She, like you, has the 4;14 translocation (her doctor thinks that was there since the beginning). She has also picked up a 1q gain.
She just started Kyprolis-Pomalyst-dex and will be doing a second transplant in a month or two. We are hoping that she will have another long remission. I strongly feel that in 5.5 more years, there will be lots of new, effective treatments – so the game will be different then for high-risk patients.
As a note, my mother's doctor said this time there will be maintenance post transplant.
That's our high risk story! Hope it helps.
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BeatMyeloma - Name: BeatMyeloma
- Who do you know with myeloma?: My mother
- When were you/they diagnosed?: Jan. 2008
- Age at diagnosis: 54
Re: What's your intermediate & high-risk myeloma experience?
Thank you, BeatMyeloma. I was beginning to think that there were only standard risks submitting to this forum. I am, of course, glad for your mother that she had a lengthy remission and I hope that all goes well for her this time, too.
I have been on Revlimid and dexamethasone. From my reading, however, I gather that it is thought that CyBorD is the preferred treatment for intermediate-risk myeloma patients.
I am curious about how your mother handled the CyBorD. Did she tolerate the side effects well? How lucky she was to have been in remission for so long without maintenance drugs.
I am also curious about the plasmacytoma, an issue about which I know almost nothing. How was it detected? Did it come as a surprise, out of the blue?
If it is not too intrusive a question, where is your mother being treated?
I have been on Revlimid and dexamethasone. From my reading, however, I gather that it is thought that CyBorD is the preferred treatment for intermediate-risk myeloma patients.
I am curious about how your mother handled the CyBorD. Did she tolerate the side effects well? How lucky she was to have been in remission for so long without maintenance drugs.
I am also curious about the plasmacytoma, an issue about which I know almost nothing. How was it detected? Did it come as a surprise, out of the blue?
If it is not too intrusive a question, where is your mother being treated?
Re: What's your intermediate & high-risk myeloma experience?
Hi mrozdav! I'll number the questions for easy reading. 
- The first time Mom did CyBorD was at the time of diagnosis. It's hard to say how well she tolerated it at that time because she had quite a few compressed vertebrae, hypercalcemia, kidney failure (reversed itself, thank goodness). So however CyBorD made her feel was just one of the issues she was dealing with at the time. Last winter when she relapsed, she went back on CyBorD. She tolerated it well and worked full time throughout. Her schedule was dex Thursday night, Cytoxan Friday morning and a subcutaneous Velcade shot Friday afternoon. Saturday she would feel like she had a low level flu, but she would feel better Sunday.
- Her doctor first suspected a relapse when her IgA began to rise. That's when they did a PET scan and found a plasmacytoma near her uterus. (She now has two small ones near her heart and kidneys, although the uterine one has shrunk.) My understanding is that, once the myeloma gets outside the bone marrow, it's become a bit smarter. After relapsing from a very successful second CyBorD regimen, she tried two rounds of RVD, which didn't work. Her doctor wants her to get the second transplant ASAP so that things don't get out of control. We are hoping the Pomalyst-Kyprolis-dex regimen will get her into a good response before her transplant. She still continues to feel well and work.
- Mom is being treated at Mayo in Rochester, Minnesota.
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BeatMyeloma - Name: BeatMyeloma
- Who do you know with myeloma?: My mother
- When were you/they diagnosed?: Jan. 2008
- Age at diagnosis: 54
Re: What's your intermediate & high-risk myeloma experience?
BeatMyeloma,
Did your mother store stem cells at the time of her first transplant, or will she have to have them harvested again for the second transplant?
I am also IgA (kappa), and in my most recent FISH, exactly one cell with 1q gain was found. This has me worried, but my doctor is not, saying that the one cell is not significant.
Did your mother store stem cells at the time of her first transplant, or will she have to have them harvested again for the second transplant?
I am also IgA (kappa), and in my most recent FISH, exactly one cell with 1q gain was found. This has me worried, but my doctor is not, saying that the one cell is not significant.
Re: What's your intermediate & high-risk myeloma experience?
Interesting they found just once cell! I have no idea about that with my mother. Her doctor just said she had recently picked up a 1q gain.
Mom did a harvest the first time and has enough remaining for 1.5 more transplants (including her upcoming one). She will harvest again before her second SCT, just in case.
Mom did a harvest the first time and has enough remaining for 1.5 more transplants (including her upcoming one). She will harvest again before her second SCT, just in case.
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BeatMyeloma - Name: BeatMyeloma
- Who do you know with myeloma?: My mother
- When were you/they diagnosed?: Jan. 2008
- Age at diagnosis: 54
Re: What's your intermediate & high-risk myeloma experience?
mrodzav
Good day. I will share. I have done a good deal of research for my lovely wife, who has t(4;14), and is now going through the ASCT, still in the newly diagnosed phase, and thank God responding well so far (but we are still in the middle of it). So, of course, this is not medical advice in any way. But here's what I learned ... a sort of t(4;14) basics.
First, for t(4;14): Velcade, Velcade, Velcade. I noticed you mentioned your doublet, but did not have Velcade. Studies are not extensive, but Velcade is the treatment that brings t(4;14) close to standard risk. I have scanned several studies. Two that I recall would be the UAMS group and the Total Therapy study, and a study from the Hovon group in Scandinavia, and a couple more that have indicated the advantages of Velcade in the t(4;14) case (but, interestingly, not for the other cytogenetic abnormalities). So ask your doctor about Velcade. In our case, we had RVD at induction, and expect to have Velcade maintenance. Velcade is a proteasome inhibitor. There is a next generation PI coming on the market, Kyprolis. Some doctor's hypothesize that Kyprolis will be better for t(4;14) than Velcade, but this is not yet available for front line, outside of clinical trials.
Second: Referring to mSmart and other resources, they do recommend ASCT for intermediate and high risk. However, you want to be VGPR or better going into the ASCT, if you can get there with a basic treatment. ASCT is an ordeal, however. Here's a second question. If your doctor thinks you are in good enough condition for the ASCT, could he possibly condition with a triplet instead of a doublet? There are reasons to back off from a triplet, and there may be a good reason in your case, so ask your doctor. Triplets generally perform better than doublets, according to the studies, if you can tolerate them.
Third: As you decide whether or not to get the ASCT, you should collect stem cells. You can potentially do the ASCT later (some doctors think this is reasonable in some cases). Revlimid, however, over time degrades your stem cells, so you need to take a break after about 5 rounds for a month to collect the stem cells. After collection, you could go return to a continuous treatment if that is what you decided.
For my wife and I, doing the research and getting educated helped us a very great deal with the situation, so I hope this helps you along, and best of luck to you and to all multiple myeloma and t(4;14) patients.
Good day. I will share. I have done a good deal of research for my lovely wife, who has t(4;14), and is now going through the ASCT, still in the newly diagnosed phase, and thank God responding well so far (but we are still in the middle of it). So, of course, this is not medical advice in any way. But here's what I learned ... a sort of t(4;14) basics.
First, for t(4;14): Velcade, Velcade, Velcade. I noticed you mentioned your doublet, but did not have Velcade. Studies are not extensive, but Velcade is the treatment that brings t(4;14) close to standard risk. I have scanned several studies. Two that I recall would be the UAMS group and the Total Therapy study, and a study from the Hovon group in Scandinavia, and a couple more that have indicated the advantages of Velcade in the t(4;14) case (but, interestingly, not for the other cytogenetic abnormalities). So ask your doctor about Velcade. In our case, we had RVD at induction, and expect to have Velcade maintenance. Velcade is a proteasome inhibitor. There is a next generation PI coming on the market, Kyprolis. Some doctor's hypothesize that Kyprolis will be better for t(4;14) than Velcade, but this is not yet available for front line, outside of clinical trials.
Second: Referring to mSmart and other resources, they do recommend ASCT for intermediate and high risk. However, you want to be VGPR or better going into the ASCT, if you can get there with a basic treatment. ASCT is an ordeal, however. Here's a second question. If your doctor thinks you are in good enough condition for the ASCT, could he possibly condition with a triplet instead of a doublet? There are reasons to back off from a triplet, and there may be a good reason in your case, so ask your doctor. Triplets generally perform better than doublets, according to the studies, if you can tolerate them.
Third: As you decide whether or not to get the ASCT, you should collect stem cells. You can potentially do the ASCT later (some doctors think this is reasonable in some cases). Revlimid, however, over time degrades your stem cells, so you need to take a break after about 5 rounds for a month to collect the stem cells. After collection, you could go return to a continuous treatment if that is what you decided.
For my wife and I, doing the research and getting educated helped us a very great deal with the situation, so I hope this helps you along, and best of luck to you and to all multiple myeloma and t(4;14) patients.
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JPC - Name: JPC
Re: What's your intermediate & high-risk myeloma experience?
Thank you mrodzav! !!
Having t(4;14) is a different version of this disease. Most of what I read does not apply to our version. So what good is it?
My husband is about to start round 5 of RVD and has been responding well, but he was Stage lll when diagnosed in November 2014, with no bone damage and no organ damage. He has almost no side effects from treatment. He is 59 and working full time and keeping up with all activities.
He goes for stem cell collection on April 27 at Dana Farber, but ... Does he go right to transplant, or do a few more rounds of RVD then go to maintenance and transplant at a later time?
Transplant right away means the end of his work life and maybe not a very long remission. I've read that 50% of transplant patients get under 18 months of remission or no benefit at all. Again, that's for ALL multiple myeloma patients. Doesn't t(4:14) mean an earlier relapse? How do you decide? Is quality of life a bigger factor with t(4;14) because they will relapse a lot sooner that the low / standard risk who may get many years from a transplant?
Having t(4;14) is a different version of this disease. Most of what I read does not apply to our version. So what good is it?
My husband is about to start round 5 of RVD and has been responding well, but he was Stage lll when diagnosed in November 2014, with no bone damage and no organ damage. He has almost no side effects from treatment. He is 59 and working full time and keeping up with all activities.
He goes for stem cell collection on April 27 at Dana Farber, but ... Does he go right to transplant, or do a few more rounds of RVD then go to maintenance and transplant at a later time?
Transplant right away means the end of his work life and maybe not a very long remission. I've read that 50% of transplant patients get under 18 months of remission or no benefit at all. Again, that's for ALL multiple myeloma patients. Doesn't t(4:14) mean an earlier relapse? How do you decide? Is quality of life a bigger factor with t(4;14) because they will relapse a lot sooner that the low / standard risk who may get many years from a transplant?
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BallerinaBritt - Name: BallerinaBritt
- Who do you know with myeloma?: dad
- When were you/they diagnosed?: November 3, 2014
- Age at diagnosis: 58
Re: What's your intermediate & high-risk myeloma experience?
I also have t(4;14), del 13 and 1q. But, despite these risks, my doctor would not state high risk. He said he still ranks me low risk?
I was diagnosed September 2013 and started RVD treatments right away. I only needed 3 treatments and had a SCT in March 2014. The SCT was rough, much harder than I thought it would be. But I am doing well now (except for the back pain from the collapsed vertebrae). My bone marrow biopsy shows I am stringent complete response. I am not taking any maintenance drugs.
Both my oncologist and myeloma specialist feel that I have many good years ahead before relapse, so I was surprised to hear about these 18 months of remission for people with these risk factors? I guess I need to do some more reading on the subject.
Does anyone know of articles about remission rates for patients with these risk factors?
I was diagnosed September 2013 and started RVD treatments right away. I only needed 3 treatments and had a SCT in March 2014. The SCT was rough, much harder than I thought it would be. But I am doing well now (except for the back pain from the collapsed vertebrae). My bone marrow biopsy shows I am stringent complete response. I am not taking any maintenance drugs.
Both my oncologist and myeloma specialist feel that I have many good years ahead before relapse, so I was surprised to hear about these 18 months of remission for people with these risk factors? I guess I need to do some more reading on the subject.
Does anyone know of articles about remission rates for patients with these risk factors?
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PeggyK
Re: What's your intermediate & high-risk myeloma experience?
Thanks to all for your responses.
PeggyK:
I am puzzled by your doctor's ranking you as a low risk patient. My impression was that, by definition, people with our particular mutations are deemed at least intermediate risk. How fortunate that you only needed three rounds of treatment before your stem cell transplant and that you are now in stringent complete response. May I assume that the sCR that you say was supported by your bone marrow biopsy was further supported by other serum tests, such as IFE?
I also find fascinating that you are not on any maintenance drugs. Did your doctors explain to you what led to this decision? Up above, BeatMyeloma told us that her mother was in remission for 5.5 years and also was not on any maintenance, so I guess it is not unheard of. My doctor has told me that I will be on maintenance drugs in any event, i.e., whether I have a transplant or not.
If you could expand somewhat on your statement that you found the stem cell transplant more difficult than you had anticipated, I would be most interested.
JPC:
I think you are right about the Velcade. When I started my doublet treatment last August, I also enrolled in a clinical trial. At that time, I knew very little about options and possibilities and was not even aware that I might or should seek a second opinion. The trial involved Revlimid and dexamethasone and an investigational drug which replaced the Velcade, which I would have ordinarily received. I have no idea at this point about what impact the investigational drug has had on the myeloma.
I am now about to start my seventh round of Revlimid / dex and am hoping that at my next week's consultation with my specialist I will receive good news about my status, i.e., that I am in complete remission. I have actually responded very well to my drug regimen, but it seems that my pace has been slower than that of others, including PeggyK. I do have second thoughts about having foregone Velcade as part of my induction treatment; I just did not know enough at the time important decisions were being made.
BeatMyeloma:
Please let us know how your mother is doing and especially how she fares with her upcoming stem cell transplant. I do not know her, but I suspect she is a remarkable woman.
PeggyK:
I am puzzled by your doctor's ranking you as a low risk patient. My impression was that, by definition, people with our particular mutations are deemed at least intermediate risk. How fortunate that you only needed three rounds of treatment before your stem cell transplant and that you are now in stringent complete response. May I assume that the sCR that you say was supported by your bone marrow biopsy was further supported by other serum tests, such as IFE?
I also find fascinating that you are not on any maintenance drugs. Did your doctors explain to you what led to this decision? Up above, BeatMyeloma told us that her mother was in remission for 5.5 years and also was not on any maintenance, so I guess it is not unheard of. My doctor has told me that I will be on maintenance drugs in any event, i.e., whether I have a transplant or not.
If you could expand somewhat on your statement that you found the stem cell transplant more difficult than you had anticipated, I would be most interested.
JPC:
I think you are right about the Velcade. When I started my doublet treatment last August, I also enrolled in a clinical trial. At that time, I knew very little about options and possibilities and was not even aware that I might or should seek a second opinion. The trial involved Revlimid and dexamethasone and an investigational drug which replaced the Velcade, which I would have ordinarily received. I have no idea at this point about what impact the investigational drug has had on the myeloma.
I am now about to start my seventh round of Revlimid / dex and am hoping that at my next week's consultation with my specialist I will receive good news about my status, i.e., that I am in complete remission. I have actually responded very well to my drug regimen, but it seems that my pace has been slower than that of others, including PeggyK. I do have second thoughts about having foregone Velcade as part of my induction treatment; I just did not know enough at the time important decisions were being made.
BeatMyeloma:
Please let us know how your mother is doing and especially how she fares with her upcoming stem cell transplant. I do not know her, but I suspect she is a remarkable woman.
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