Hi everyone
I've been visiting this forum almost on a daily basis since my diagnosis in November last year, but I haven't been ready to join until now. So first of all I'd like to THANK YOU ALL for all of the information you share, it has been such an amazing support to me.
Now to my question. After initial treatment (Velcade / dex / cyclophosphamide) I went through my first autologous stem cell transplant with high-dose melphalan i April. I am now close to VGPR, and my doctors (myeloma specialists) suggest I go through a second transplant in the hope of obtaining an even better response and longer remission. I am 37 years old with low-risk multiple myeloma. I recovered well from my first transplant, which is why I think my doctors argue that I might just as well take the chance, despite little evidence that a second transplant will make a difference.
I basically have two questions:
Are there increased risks that you would consider when doing a second transplant with high-dose melphalan, such as increased risk of secondary cancers / malignancies, or overall long-term destructive effects as it also affects healthy cells? Or is it already too late to worry about that?
I am not worried about short term effects, but possible bad long-term effects and consequences.
Also, I have experienced pain in my hands / feet / legs / knees (not the typical Velcade neuropathy) that appeared AFTER treatment, that my doctors think are late side effects. Would you hesitate doing a second transplant because you think they could worsen?
What are the alternatives? Wait and see without further treatment except monthly Zometa? Or some kind of consolidation?
I know there are no clear answers, and I am asking for your personal or professional thoughts and opinions.
Best wishes to all!
Forums
7 posts
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Myosotis - Who do you know with myeloma?: myself
- When were you/they diagnosed?: November 2015
- Age at diagnosis: 37
Re: Should I have a second (tandem) auto transplant?
Myosotis,
I'm not an expert by any stretch of the imagination, but I would think that at your young age, you might be a candidate for an allogeneic transplant. In case you have not heard of this type of transplant, it is sometimes used in young patients, such as yourself. An allogeneic transplant is one in which someone else's stem cells are used. A good match has to be found, which can be tricky, and there are many factors that have to be considered with this type of transplant.
There is a regular poster on the forum, Mark11, who may be slightly older than you are, but in your general age category. He had a very successful allogeneic transplant about 5 years ago, and I believe, is in stringent complete response, (sCR), with no need for maintenance drugs.
If you look up his postings, Mark11 (and sometimes, in older postings, just "Mark") gives lots of details and provides excellent insights about the procedure and the risks, which are greater than those with autologous transplant. He is a great proponent of the allogeneic route, and very knowledgeable.
Sorry to hear about the neuropathy. Did you receive Velcade as an intravenous (IV) infusion, or as an injection under the skin?
Good luck, and let us know what you decide to do, or what other issues you are encountering.
Ellen Harris
I'm not an expert by any stretch of the imagination, but I would think that at your young age, you might be a candidate for an allogeneic transplant. In case you have not heard of this type of transplant, it is sometimes used in young patients, such as yourself. An allogeneic transplant is one in which someone else's stem cells are used. A good match has to be found, which can be tricky, and there are many factors that have to be considered with this type of transplant.
There is a regular poster on the forum, Mark11, who may be slightly older than you are, but in your general age category. He had a very successful allogeneic transplant about 5 years ago, and I believe, is in stringent complete response, (sCR), with no need for maintenance drugs.
If you look up his postings, Mark11 (and sometimes, in older postings, just "Mark") gives lots of details and provides excellent insights about the procedure and the risks, which are greater than those with autologous transplant. He is a great proponent of the allogeneic route, and very knowledgeable.
Sorry to hear about the neuropathy. Did you receive Velcade as an intravenous (IV) infusion, or as an injection under the skin?
Good luck, and let us know what you decide to do, or what other issues you are encountering.
Ellen Harris
Re: Should I have a second (tandem) auto transplant?
Hello Myo:
Further to Ellen's comments, based on your age, if you are tolerating treatments, I would investigate the concept of treating to MRD -, which next to the allo described by Ellen, would give you a decent shot for a long-term remission. Where are you located?? I think that in some locations (the States) there are a lot of approved drug combinations and clinical trials as options. If you are in a location with less options, then the second auto becomes more of a default as to something you could do to deepen the response. Good luck to you.
Further to Ellen's comments, based on your age, if you are tolerating treatments, I would investigate the concept of treating to MRD -, which next to the allo described by Ellen, would give you a decent shot for a long-term remission. Where are you located?? I think that in some locations (the States) there are a lot of approved drug combinations and clinical trials as options. If you are in a location with less options, then the second auto becomes more of a default as to something you could do to deepen the response. Good luck to you.
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JPC - Name: JPC
Re: Should I have a second (tandem) auto transplant?
Thank you Ellen and JPC for taking the time to reply to me.
I have read Mark's posts about allogeneic transplant, and I have also researched it a bit. But even if I would like to go that route, where I live (I'm in Europe), that is not an option at this time. I think it is considered too risky.
Ellen: I received Velcade subcutaneously, and didn't experience these side effects until about four months after last Velcade treatment, so I'm not sure it is related. I have not really seen anyone on this forum describing the kind of pains I experience after Velcade, but on the other hand, I suppose side effects can manifest themselves in many ways?
JPC: When you mention treating to MRD-, are you thinking of any specific treatments or drugs that are being used as alternatives to transplant?
I have read Mark's posts about allogeneic transplant, and I have also researched it a bit. But even if I would like to go that route, where I live (I'm in Europe), that is not an option at this time. I think it is considered too risky.
Ellen: I received Velcade subcutaneously, and didn't experience these side effects until about four months after last Velcade treatment, so I'm not sure it is related. I have not really seen anyone on this forum describing the kind of pains I experience after Velcade, but on the other hand, I suppose side effects can manifest themselves in many ways?
JPC: When you mention treating to MRD-, are you thinking of any specific treatments or drugs that are being used as alternatives to transplant?
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Myosotis - Who do you know with myeloma?: myself
- When were you/they diagnosed?: November 2015
- Age at diagnosis: 37
Re: Should I have a second (tandem) auto transplant?
Hi Myosotis,
I was diagnosed with myeloma when I was 31 and had my first auto transplant soon after. My doctors wanted me to do an allo transplant after because I was young and my brother was a complete match. After numerous hours of research and talking to several people, I chose not to do it. It was still too risky for me. And I didn’t do maintenance after either. I wanted to give my body a break. I was low-risk and hit complete remission after that transplant and was ready for a bit of normalcy.
Four years later my M-spike started slowly creeping up again. (I got divorced and I blame the relapse on the stress from that.) I started on Revlimid and dex and they didn’t really do much, so my doctor suggested a second auto transplant. I did it and it pushed my numbers back down. This time I did maintenance for about a year (until I couldn’t take it anymore). It’s been five years since that transplant and my M-spike is still under control. It’s at about 0.9 g/dL right now and seems to be climbing 0.1 every three months. I’m not in a hurry to get back on any meds.
I guess my point in telling you all of this is that this is a marathon and not a sprint for low-risk patients. Don’t rush into things and if your body is telling you that you need a break, take a break. I’ve found that if I trust my gut reactions I’m usually right.
Jen
I was diagnosed with myeloma when I was 31 and had my first auto transplant soon after. My doctors wanted me to do an allo transplant after because I was young and my brother was a complete match. After numerous hours of research and talking to several people, I chose not to do it. It was still too risky for me. And I didn’t do maintenance after either. I wanted to give my body a break. I was low-risk and hit complete remission after that transplant and was ready for a bit of normalcy.
Four years later my M-spike started slowly creeping up again. (I got divorced and I blame the relapse on the stress from that.) I started on Revlimid and dex and they didn’t really do much, so my doctor suggested a second auto transplant. I did it and it pushed my numbers back down. This time I did maintenance for about a year (until I couldn’t take it anymore). It’s been five years since that transplant and my M-spike is still under control. It’s at about 0.9 g/dL right now and seems to be climbing 0.1 every three months. I’m not in a hurry to get back on any meds.
I guess my point in telling you all of this is that this is a marathon and not a sprint for low-risk patients. Don’t rush into things and if your body is telling you that you need a break, take a break. I’ve found that if I trust my gut reactions I’m usually right.
Jen
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jennifrp - Name: Jen
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 2006
- Age at diagnosis: 31
Re: Should I have a second (tandem) auto transplant?
Hello, Myo:
There is one trial that has a superior CR and MRD - rate. That is the trial at the University of Chicago by Dr. Jakubowiak. Basically, its Kyprolis, Revlimid, and dexamethasone (KRD) induction, an autologous stem cell transplant (ASCT), KRD consolidation, and a lower level of KRD maintenance for another year or two.
If you look that one up, off the top of my head, that approach got something like 85% to MRD-. Study is new, and progression-free survival data is not ripe, but they do have data that many (not all) are still in MRD-. The expectation is that the depth of response will translate into improved progression-free survival, however, the data is not in on that yet.
I understand that is not an option for you, as KRD is under approval in Europe (I think) for the relapsed setting, and could not be used for initial induction there.
If you are not in CR / MRD - after the first transplant, then the second ASCT does deepen the response, but keep in mind that would be for the "average" person in a study. For an individual, that would impossible to predict. Other alternatives might be Revlimid, Velcade, and dexamethasone (RVD) consolidation, or clinical trials employing Kyprolis, the monoclonal antibodies, or maybe one of the even newer agents like selinexor.
Good luck to you. Regards,
There is one trial that has a superior CR and MRD - rate. That is the trial at the University of Chicago by Dr. Jakubowiak. Basically, its Kyprolis, Revlimid, and dexamethasone (KRD) induction, an autologous stem cell transplant (ASCT), KRD consolidation, and a lower level of KRD maintenance for another year or two.
If you look that one up, off the top of my head, that approach got something like 85% to MRD-. Study is new, and progression-free survival data is not ripe, but they do have data that many (not all) are still in MRD-. The expectation is that the depth of response will translate into improved progression-free survival, however, the data is not in on that yet.
I understand that is not an option for you, as KRD is under approval in Europe (I think) for the relapsed setting, and could not be used for initial induction there.
If you are not in CR / MRD - after the first transplant, then the second ASCT does deepen the response, but keep in mind that would be for the "average" person in a study. For an individual, that would impossible to predict. Other alternatives might be Revlimid, Velcade, and dexamethasone (RVD) consolidation, or clinical trials employing Kyprolis, the monoclonal antibodies, or maybe one of the even newer agents like selinexor.
Good luck to you. Regards,
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JPC - Name: JPC
Re: Should I have a second (tandem) auto transplant?
Thank you JPC, that is useful information. Knowing what is going on is always good.
And thank you Jen, I think you are right about the gut feeling. And hopeful that your second transplant has kept you in remission longer than your first! I hope you will be able to keep on going without medication for a long time.
Just if anyone's interested to know: I will go through a second stem cell transplant in August. I learned from my doctor that I don't really have much other options until I relapse, when other treatments will become available. First line treatment is pretty standardized where I live.
Good luck to everyone!
And thank you Jen, I think you are right about the gut feeling. And hopeful that your second transplant has kept you in remission longer than your first! I hope you will be able to keep on going without medication for a long time.
Just if anyone's interested to know: I will go through a second stem cell transplant in August. I learned from my doctor that I don't really have much other options until I relapse, when other treatments will become available. First line treatment is pretty standardized where I live.
Good luck to everyone!
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Myosotis - Who do you know with myeloma?: myself
- When were you/they diagnosed?: November 2015
- Age at diagnosis: 37
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