I, like you, did not respond well to treatment. Revlimid turned into CyborD, etc., with little response while on the drugs with no sustained response once stopping the drugs. Numbers back up within days to weeks.
The only thing left at the time (2009) was a transplant. As you may have guessed. I had absolutely no response to,the transplant. I went into the procedure with high numbers, hoping the transplant would take care of the myeloma. It didn't.
So I feel for you. I proceeded with the transplant as I needed treatment and (at the time) it was my only option left after exhausting all of the current available multiple myeloma drugs. The SCT was very hard on me and I would never consider doing one again. It took years to recover and I am younger than you.
So it's a tough call, but if your doctors don't think it will work for you, I'd believe them and enjoy your life as best you can continuing treatment through less invasive methods!
Forums
Re: Autologous transplant for refractory / high risk myeloma
Hello Mr. PH:
Just wanted to give one followup / clarification.
First, I am glad you found the article / background helpful, but what you might do is a very difficult and personal decision. I was in no way giving advice that was advocating one approach over another. Since you stated that there was poor response up to now, I was trying to help you identify options (or I would prefer to look at it that way).
Once you decide an approach and implement it, you will have no way of knowing that it was the best approach. If it worked, you might have done better with an easier approach, if it did not work, you would not know for sure if another approach would have done better. Very difficult decision.
Joneman did indicate that he was in a similar situation, and is several years down the road, so that at least is positive. But I agree that you do have to do something until you hopefully get a decent response.
Best of luck to you both.
Just wanted to give one followup / clarification.
First, I am glad you found the article / background helpful, but what you might do is a very difficult and personal decision. I was in no way giving advice that was advocating one approach over another. Since you stated that there was poor response up to now, I was trying to help you identify options (or I would prefer to look at it that way).
Once you decide an approach and implement it, you will have no way of knowing that it was the best approach. If it worked, you might have done better with an easier approach, if it did not work, you would not know for sure if another approach would have done better. Very difficult decision.
Joneman did indicate that he was in a similar situation, and is several years down the road, so that at least is positive. But I agree that you do have to do something until you hopefully get a decent response.
Best of luck to you both.
-
JPC - Name: JPC
Re: Autologous transplant for refractory / high risk myeloma
Hi Joneman
Thank you very much for sharing your experience, which does sound similar to mine. Your experience with an ASCT – an ordeal that turned out not to be effective – is something I would want to avoid. And what I wonder (and is one of the questions that led me to start this thread) is whether a poor drug therapy response (during induction) is a harbinger for a poor response to an ASCT.
If you don't mind, is it possible for you to tell me what has sustained you for all this time, if neither the drug treatments, nor the stem cell procedure worked?
Right now, the supportive therapies I am getting – transfusions and IVIG – for my blood counts, and Zometa and pain killers for my bones and pain, respectively, are what are sustaining me.
I just wonder how long one can continue on supportive therapy alone if no progress is being made against the cancer. Perhaps that just depends on how aggressive one's disease is. Any insights from your experience?
Thanks again.
Hi JPC
I understand that you were not advocating for an ASCT or any other specific treatment, but were just providing information in answer to my questions. (Which I appreciate very much.)
And I understand that decisions on treatment are mine alone to make, and that one can never be sure about whether one has made the optimal choice.
Hopefully, I will, together with my doctors, come up with something that works. At the very least I will have done my best to have done so.
Thanks again.
Thank you very much for sharing your experience, which does sound similar to mine. Your experience with an ASCT – an ordeal that turned out not to be effective – is something I would want to avoid. And what I wonder (and is one of the questions that led me to start this thread) is whether a poor drug therapy response (during induction) is a harbinger for a poor response to an ASCT.
If you don't mind, is it possible for you to tell me what has sustained you for all this time, if neither the drug treatments, nor the stem cell procedure worked?
Right now, the supportive therapies I am getting – transfusions and IVIG – for my blood counts, and Zometa and pain killers for my bones and pain, respectively, are what are sustaining me.
I just wonder how long one can continue on supportive therapy alone if no progress is being made against the cancer. Perhaps that just depends on how aggressive one's disease is. Any insights from your experience?
Thanks again.
Hi JPC
I understand that you were not advocating for an ASCT or any other specific treatment, but were just providing information in answer to my questions. (Which I appreciate very much.)
And I understand that decisions on treatment are mine alone to make, and that one can never be sure about whether one has made the optimal choice.
Hopefully, I will, together with my doctors, come up with something that works. At the very least I will have done my best to have done so.
Thanks again.
-
MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Autologous transplant for refractory / high risk myeloma
Hi Joneman
Like you, I had did not have a great response to chemo prior to autologous stem cell transplant (ASCT) and I was sent to ASCT with 30%+ bone marrow plasma cell percentage on bone marrow biopsy (BMB). I had transplant in January of this year, did not get much response other than a bit of drop, then creeping up and remaining stable for a number of months, now back up and back on chemo.
So, yes, I think you are right, it is best to try to get a good response before ASCT. Some people with high numbers will respond to ASCT (luck-of-the-draw), but I do think one is at an advantage going in with low numbers, otherwise oncologists wouldn't bother trying to get counts as low as they can prior to SCT.
My oncologist did try to get numbers down prior to ASCT, but after 9 rounds of high dose chemo (CyBorD and RVD at high dose), oncologist said that was as far as I should go, time to try transplant, so I did.
Anyhow, now my numbers are on the rise and I just quit Pomalyst at 4 mg after 9 days because of severe side effects. I feel like my options are running out at this point and I'm feeling frightened.
So, the big question on my mind is the one Mr. Potatohead asked:
I hope you will be kind enough to answer because it may shed some hope on my situation and the situation of others who are getting discouraged.
Thanks,
Melissa
Like you, I had did not have a great response to chemo prior to autologous stem cell transplant (ASCT) and I was sent to ASCT with 30%+ bone marrow plasma cell percentage on bone marrow biopsy (BMB). I had transplant in January of this year, did not get much response other than a bit of drop, then creeping up and remaining stable for a number of months, now back up and back on chemo.
So, yes, I think you are right, it is best to try to get a good response before ASCT. Some people with high numbers will respond to ASCT (luck-of-the-draw), but I do think one is at an advantage going in with low numbers, otherwise oncologists wouldn't bother trying to get counts as low as they can prior to SCT.
My oncologist did try to get numbers down prior to ASCT, but after 9 rounds of high dose chemo (CyBorD and RVD at high dose), oncologist said that was as far as I should go, time to try transplant, so I did.
Anyhow, now my numbers are on the rise and I just quit Pomalyst at 4 mg after 9 days because of severe side effects. I feel like my options are running out at this point and I'm feeling frightened.
So, the big question on my mind is the one Mr. Potatohead asked:
If you don't mind, is it possible for you to tell me what has sustained you for all this time, if neither the drug treatments, nor the stem cell procedure worked?"
I hope you will be kind enough to answer because it may shed some hope on my situation and the situation of others who are getting discouraged.
Thanks,
Melissa
-
Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
Re: Autologous transplant for refractory / high risk myeloma
I, like you, did not respond well to treatment. Revlimid turned into CyborD, etc., with little response while on the drugs, with no sustained response once stopping the drugs. Numbers back up within days to weeks.
The only thing left at the time (2009) was a transplant. As you may have guessed. I had absolutely no response to,the transplant. I went into the procedure with high numbers hoping the transplant would take care of the myeloma. It didn't.
So I feel for you. I proceeded with the transplant as I needed treatment and (at the time) it was my only option left after exhausting all of the current available multiple myeloma drugs. The SCT was very hard on me and I would never consider doing one again. It took years to recover and I am younger than you.
So it's a tough call, but if your doctors don't think it will work for you, I'd believe them and enjoy your life as best you can, continuing treatment through less invasive methods!
The only thing left at the time (2009) was a transplant. As you may have guessed. I had absolutely no response to,the transplant. I went into the procedure with high numbers hoping the transplant would take care of the myeloma. It didn't.
So I feel for you. I proceeded with the transplant as I needed treatment and (at the time) it was my only option left after exhausting all of the current available multiple myeloma drugs. The SCT was very hard on me and I would never consider doing one again. It took years to recover and I am younger than you.
So it's a tough call, but if your doctors don't think it will work for you, I'd believe them and enjoy your life as best you can, continuing treatment through less invasive methods!
-
Joneman
Re: Autologous transplant for refractory / high risk myeloma
Mr PH and Melpen, are your docs myeloma specialists or general oncologists?
Re: Autologous transplant for refractory / high risk myeloma
Thank you everyone for your comments back and question. It's a good question and the answer can only be an educated guess.
First, I was very young when diagnosed (age 52 1/2) and had never been sick, an athlete and generally very healthy. I think this is a factor mainly because my youth made me stronger to begin with.
Second, if you have the attitude (which I didn't at first) that multiple myeloma can't be cured but it can be slowed down and turned into a chronic condition, then I think all of the treatments that I have endured (I say endured because with some of the drugs I had extreme side effects) ultimately do slow down the progression.
Third I have been undergoing constant chemotherapy. Meaning, as I said, if I stop treatment, my light chains and M- spike (IgG) shoot up fast and I have had kidney involvement.
So wrapping all these together, I have lasted even though I haven't fit the mold that many myeloma doctors strive to achieve. That being diagnosis, treatment, followed by remission, time off from drugs, relapse, and further treatment leading to a revolving cycle.
I think I am still here because (finally) the proliferation of the new novel drugs and my constant use of them. Also, the new thinking about combining some of the older drugs with the newer drugs gives us a lot more treatment options that we had 10 years ago. Again, while I am on any given drug, my numbers remain stable or even drop slightly 25 to 30%. That's been enough to keep me alive.
My comment about the transplant is to make the point that in today's current environment a stem cell transplant is just another form of treatment. A transplant is no longer the Holy Grail that works better than any other treatment. These novel therapies are fantastic and getting as good of a result as a transplant in many cases. Only with a much shorter recovery time and fewer long-term effects to the body.
We are all different. I am currently on 4 mg of Pomalyst. Is it what the doctor wanted? No, but it is what I wanted and it is for now holding my numbers in place with only small increases in numbers.
When the Pomalyst stops working (I monitor monthly), I'll have to get more aggressive, but I am feeling so much better using a single drug that I seem to tolerate well in terms of side effects.
So as we all know, this disease has a mind of its own. While many feel I should have been gone long ago, I think attitude plays a large part, age plays a large part, the new novel drugs play a large part, and I have been lucky to have been blessed with a fantastic caregiver (my wife of 28 years) and great doctors who are willing to try new things and support my decisions.
I hope this makes sense to those of you who asked and that it answers your questions. We all need to fight this disease in a way that works for each of us as an individual. It is good to share our experiences, as it creates ideas that become new treatments.
First, I was very young when diagnosed (age 52 1/2) and had never been sick, an athlete and generally very healthy. I think this is a factor mainly because my youth made me stronger to begin with.
Second, if you have the attitude (which I didn't at first) that multiple myeloma can't be cured but it can be slowed down and turned into a chronic condition, then I think all of the treatments that I have endured (I say endured because with some of the drugs I had extreme side effects) ultimately do slow down the progression.
Third I have been undergoing constant chemotherapy. Meaning, as I said, if I stop treatment, my light chains and M- spike (IgG) shoot up fast and I have had kidney involvement.
So wrapping all these together, I have lasted even though I haven't fit the mold that many myeloma doctors strive to achieve. That being diagnosis, treatment, followed by remission, time off from drugs, relapse, and further treatment leading to a revolving cycle.
I think I am still here because (finally) the proliferation of the new novel drugs and my constant use of them. Also, the new thinking about combining some of the older drugs with the newer drugs gives us a lot more treatment options that we had 10 years ago. Again, while I am on any given drug, my numbers remain stable or even drop slightly 25 to 30%. That's been enough to keep me alive.
My comment about the transplant is to make the point that in today's current environment a stem cell transplant is just another form of treatment. A transplant is no longer the Holy Grail that works better than any other treatment. These novel therapies are fantastic and getting as good of a result as a transplant in many cases. Only with a much shorter recovery time and fewer long-term effects to the body.
We are all different. I am currently on 4 mg of Pomalyst. Is it what the doctor wanted? No, but it is what I wanted and it is for now holding my numbers in place with only small increases in numbers.
When the Pomalyst stops working (I monitor monthly), I'll have to get more aggressive, but I am feeling so much better using a single drug that I seem to tolerate well in terms of side effects.
So as we all know, this disease has a mind of its own. While many feel I should have been gone long ago, I think attitude plays a large part, age plays a large part, the new novel drugs play a large part, and I have been lucky to have been blessed with a fantastic caregiver (my wife of 28 years) and great doctors who are willing to try new things and support my decisions.
I hope this makes sense to those of you who asked and that it answers your questions. We all need to fight this disease in a way that works for each of us as an individual. It is good to share our experiences, as it creates ideas that become new treatments.
-
Joneman
Re: Autologous transplant for refractory / high risk myeloma
Hello Terry S.
No, I am not under the care of a "myeloma specialist," so in 2016 I am going to look into changing medical insurance and try to get on a plan that Dana Farber will accept, as there are about a dozen specialists there.
My oncologist is now leaving the Boston hospital where I currently get treatment, and while she was not a myeloma specialist, she had a strong interest and background in myeloma / amyloidosis and was a Harvard instructor who rubbed elbows with other Harvard oncologists from Dana Farber, MGH, etc, so I had faith she was up on the latest treatment, but I don't really know for sure.
My new oncologist who I will be assigned to does not have such extensive knowledge / experience and since I have been through induction therapy and ASCT, and I have not achieved good response and my case is now getting more complicated, I think I should try to seek the best treatment I can.
I am on insurance through the state of MA, a HealthConnector plan, and each year plans change and there are limits where a patient can go. Right now, the plan I am on is not accepted by Dana, but one can change insurance at the beginning of each calendar year, so I will look into purchasing a plan I am allowed into and accepted by Dana. Hopefully there is one.
Joneman,
I'm glad you have been able to maintain and keep the myeloma at bay for many years and hopefully for many, many more to come. I am inspired by your story and I do believe attitude and exercise and diet certainly play a role along with the novel drugs.
Unfortunately, I recently tried Pomalyst at 4 mg and had to stop after 9 days due to severe side effects. I meet with oncologist next week and will see what the next plan is. I had high hopes for the Pomalyst, so I am a bit dumbfounded right now. Maybe a lower dose will work without the side effects. I have heard some patients have been on Pomalyst for many years and still maintaining with good results (when initial drugs and ASCT did not do it). I hope you are in that category.
My best wishes to you and thank you for your answer.
No, I am not under the care of a "myeloma specialist," so in 2016 I am going to look into changing medical insurance and try to get on a plan that Dana Farber will accept, as there are about a dozen specialists there.
My oncologist is now leaving the Boston hospital where I currently get treatment, and while she was not a myeloma specialist, she had a strong interest and background in myeloma / amyloidosis and was a Harvard instructor who rubbed elbows with other Harvard oncologists from Dana Farber, MGH, etc, so I had faith she was up on the latest treatment, but I don't really know for sure.
My new oncologist who I will be assigned to does not have such extensive knowledge / experience and since I have been through induction therapy and ASCT, and I have not achieved good response and my case is now getting more complicated, I think I should try to seek the best treatment I can.
I am on insurance through the state of MA, a HealthConnector plan, and each year plans change and there are limits where a patient can go. Right now, the plan I am on is not accepted by Dana, but one can change insurance at the beginning of each calendar year, so I will look into purchasing a plan I am allowed into and accepted by Dana. Hopefully there is one.
Joneman,
I'm glad you have been able to maintain and keep the myeloma at bay for many years and hopefully for many, many more to come. I am inspired by your story and I do believe attitude and exercise and diet certainly play a role along with the novel drugs.
Unfortunately, I recently tried Pomalyst at 4 mg and had to stop after 9 days due to severe side effects. I meet with oncologist next week and will see what the next plan is. I had high hopes for the Pomalyst, so I am a bit dumbfounded right now. Maybe a lower dose will work without the side effects. I have heard some patients have been on Pomalyst for many years and still maintaining with good results (when initial drugs and ASCT did not do it). I hope you are in that category.
My best wishes to you and thank you for your answer.
-
Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
Re: Autologous transplant for refractory / high risk myeloma
Thank you very much, Joneman, for sharing your journey with us. So perhaps striving for an arrest of progression or slower progression may be more realistic for some of us than aiming for remission.
My oncologist has told me that he is not out of ammunition yet, despite my having not responded to either Revlimid or Velcade.
Your post is very encouraging, and I wish you continued and enduring good health.
My oncologist has told me that he is not out of ammunition yet, despite my having not responded to either Revlimid or Velcade.
Your post is very encouraging, and I wish you continued and enduring good health.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Autologous transplant for refractory / high risk myeloma
Hi TerryS,
My oncologist is not a myeloma specialist per se, but has had experience treating myeloma patients, and has even published papers on multiple myeloma. In addition, I consulted with a myeloma expert at the City of Hope in Pasadena, CA, and he was in basic agreement with the strategy my oncologist is following.
My oncologist is not a myeloma specialist per se, but has had experience treating myeloma patients, and has even published papers on multiple myeloma. In addition, I consulted with a myeloma expert at the City of Hope in Pasadena, CA, and he was in basic agreement with the strategy my oncologist is following.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
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