I was diagnosed in 2001 at the age of 32. I had my first auto stem cell transplant in February 2002 and was in remission until July 2010, when I had my second auto transplant.
A few months ago, I relapsed and started Revlimid, but it didn´t work for me (and actually made things worse), so my doctor put me on Velcade and bendamustine (Treanda). This combo did work for me since the very first cycle.
The dilemma now is what to do next. This is my third line therapy and the two prior ones consisted of induction therapy and then consolidation therapy (the auto stem cell transplants), but what are my options when transplantation as consolidation is no longer an option?
I am on my second Velcade + bendamustine + dex cycle and I am supposed to get 6 more cycles, and my question is: Once I am finished with all the cycles, how do I consolidate my response?
Anyone in a similar situation?
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Re: What to do when no more transplants possible?
Wondering why I haven´t gotten any answer / opinion / help. I doubt I am the only one in a situation like this. Maybe I am posting in the wrong place / subject???
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Leyla
Re: What to do when no more transplants possible?
I don't know how plausible this is, but an allogeneic (donor) SCT may be a possibility if all other avenues have been exhausted. It's riskier due to graft vs. host disease (GVHD), but considering the alternatives and if nothing else is working ...
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Blackbird - Name: Rick Crow
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb, 2013
- Age at diagnosis: 53
Re: What to do when no more transplants possible?
A lot of new treatments are available. What country/region are you living in?
I could give some links to treatments and very interesting results. But I feel bad doing so, being absolutely "lay".
Have a look at http://www.mayoclinic.org AND ask ask ask your own myeloma specialist!
I could give some links to treatments and very interesting results. But I feel bad doing so, being absolutely "lay".
Have a look at http://www.mayoclinic.org AND ask ask ask your own myeloma specialist!
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: What to do when no more transplants possible?
Hello Lev:
I am in Spain and my two auto transplants have been performed in Salamanca.
Velcade + dex + bendamustine is working so far. I just want to have a plan "B" for when this plan "A" stops working, and also determine if there is a way to consolidate my response once I finish my eight cycles with this protocol.
Thanks for answering!
I am in Spain and my two auto transplants have been performed in Salamanca.
Velcade + dex + bendamustine is working so far. I just want to have a plan "B" for when this plan "A" stops working, and also determine if there is a way to consolidate my response once I finish my eight cycles with this protocol.
Thanks for answering!
Re: What to do when no more transplants possible?
If I understand correctly from articles I have read, Spain is very fine when it comes to myeloma.
And the university hospital of Salamanca has been involved in research and / or trials.
I hope somebody else dare tell you about alternative treatments, and a plan B.
It seems that C and may also be available - and more coming every year.
Greetings
And the university hospital of Salamanca has been involved in research and / or trials.
I hope somebody else dare tell you about alternative treatments, and a plan B.
It seems that C and may also be available - and more coming every year.
Greetings
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: What to do when no more transplants possible?
Hello Leyla,
Have your doctors told you that they won't do a third stem cell transplant? Is that why you are asking about alternative consolidation options?
Also, have your doctors told you that they want to, in fact, do some sort of consolidation therapy after your Velcade, bendamustine, and dex therapy?
It's not clear to me that consolidation therapy is necessarily standard anywhere, whether it's Europe or the States, for patients who are where you are at in your sequence of treatments.
In any case, the therapy that you'll get after your current treatment will probably depend on the response you get to your current treatment regimen, as well as what you were treated with in the past.
Aside from high-dose melphalan and your current treatment regimen, what other treatment regimens have you had?
Have your doctors told you that they won't do a third stem cell transplant? Is that why you are asking about alternative consolidation options?
Also, have your doctors told you that they want to, in fact, do some sort of consolidation therapy after your Velcade, bendamustine, and dex therapy?
It's not clear to me that consolidation therapy is necessarily standard anywhere, whether it's Europe or the States, for patients who are where you are at in your sequence of treatments.
In any case, the therapy that you'll get after your current treatment will probably depend on the response you get to your current treatment regimen, as well as what you were treated with in the past.
Aside from high-dose melphalan and your current treatment regimen, what other treatment regimens have you had?
Re: What to do when no more transplants possible?
Q: Have your doctors told you that they won't do a third stem cell transplant?
A: No. They haven't mentioned a third ASCT at all. They mentioned an allo, since I have an HLA brother
Q: Is that why you are asking about alternative consolidation options?
A: Yes, and also because I would like to hear about alternatives to the allo. They scare me and might close doors to future immunotherapy treatments.
Q: Also, have your doctors told you that they want to, in fact, do some sort of consolidation therapy after your Velcade, bendamustine, and dex therapy?
A: Yes.
Q: Aside from high-dose melphalan and your current treatment regimen, what other treatment regimens have you had?
A: As follows:
1. VAD as induction therapy before my first ASCT in 2002. Then high dose melphalan and 2 years of interferon as maintenance. Also pamidronate [Aredia]
2. Velcade and pegylated liposomal doxorubicin [Doxil] as induction therapy before my second ASCT in 2010. Then high-dose melphalan and busulfan and no maintenance. Only pamidronate.
3. 2014: 5 cycles of Revlimid and dex -- didn't work! Actually in my second cycle of Velcade, dex, and bendamustine and it's working.
A: No. They haven't mentioned a third ASCT at all. They mentioned an allo, since I have an HLA brother
Q: Is that why you are asking about alternative consolidation options?
A: Yes, and also because I would like to hear about alternatives to the allo. They scare me and might close doors to future immunotherapy treatments.
Q: Also, have your doctors told you that they want to, in fact, do some sort of consolidation therapy after your Velcade, bendamustine, and dex therapy?
A: Yes.
Q: Aside from high-dose melphalan and your current treatment regimen, what other treatment regimens have you had?
A: As follows:
1. VAD as induction therapy before my first ASCT in 2002. Then high dose melphalan and 2 years of interferon as maintenance. Also pamidronate [Aredia]
2. Velcade and pegylated liposomal doxorubicin [Doxil] as induction therapy before my second ASCT in 2010. Then high-dose melphalan and busulfan and no maintenance. Only pamidronate.
3. 2014: 5 cycles of Revlimid and dex -- didn't work! Actually in my second cycle of Velcade, dex, and bendamustine and it's working.
Re: What to do when no more transplants possible?
What about the Mayo Clinic virotherapy that is under development (see related Beacon discussion thread)?
It's coming up for a bigger (phase 2) clinical trial now. Maybe it will be more widely available by the time you might be eligible.
It's coming up for a bigger (phase 2) clinical trial now. Maybe it will be more widely available by the time you might be eligible.
Re: What to do when no more transplants possible?
Laika,
You do have access to a lot of trials in Spain, and in Salamanca specifically. If you are looking for a "Plan B", you have access to some of the new monoclonal antibodies, pomalidomide and other new drugs just in Salamanca alone.
I would probably defer to a specialist in Salamanca to get his/her take on the best ones to pursue given your treatment history. Do you have access to Dr. San Miguel at Salamanca? You probably know already that he is one of the top multiple myeloma researchers in the world.
As I recall, allos tend to be more successful in a front line setting as opposed to a refractory / relapsed setting. I can also understand your hesitancy to pursue an allo if they were to disqualify you for future drug trials (especially given some of the new, promising drugs currently in trial). It's a tough choice.
See the section on Spain in this link:
http://www.centerwatch.com/clinical-trials/listings/ctrc/condition/212/multiple-myeloma/?mp=BCF#Spain
You do have access to a lot of trials in Spain, and in Salamanca specifically. If you are looking for a "Plan B", you have access to some of the new monoclonal antibodies, pomalidomide and other new drugs just in Salamanca alone.
I would probably defer to a specialist in Salamanca to get his/her take on the best ones to pursue given your treatment history. Do you have access to Dr. San Miguel at Salamanca? You probably know already that he is one of the top multiple myeloma researchers in the world.
As I recall, allos tend to be more successful in a front line setting as opposed to a refractory / relapsed setting. I can also understand your hesitancy to pursue an allo if they were to disqualify you for future drug trials (especially given some of the new, promising drugs currently in trial). It's a tough choice.
See the section on Spain in this link:
http://www.centerwatch.com/clinical-trials/listings/ctrc/condition/212/multiple-myeloma/?mp=BCF#Spain
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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