Thank you, SK1. I was very much like your wife early last year. I couldn't read anything on the Internet and I had to avoid even the forums. I'm still VERY selective about what I read or expose myself too. It's just too difficult to filter at times. I have found this site to be well balanced with truth and hope.
It's hard not to let the del 17 issue "get to me" when it is clearly an issue for the doctors, but we still must recognize we are individuals and our treatment will be individual. We must have hope and there is reason to hope.
Good luck to you and your wife.
Forums
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Ready to say hello
Hi Mark,
A belated welcome. Thought your initial post was very well written. I wish you the best of luck and am glad that you have a positive attitude. Please keep us updated on your progress.
Ted
A belated welcome. Thought your initial post was very well written. I wish you the best of luck and am glad that you have a positive attitude. Please keep us updated on your progress.
Ted
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Ted Kan - Who do you know with myeloma?: Self
- When were you/they diagnosed?: December 2014
- Age at diagnosis: 75
Re: Ready to say hello
Hello Mark:
I don't know how far along you are in your research, but I thought I would share a couple of the things I recall reading about del 17p in the last year or so. Dr. Saad Usmani has published a study about a year ago wherein he used Revlimid, Velcade, and dexamethasone (RVD) maintenance post stem cell transplant for del 17p, and found significantly longer progression-free survival (PFS) than found in earlier studies. The RVD maintenance sounds like a lot, however, I understand that the dosage is lower and at a lower frequency of administration in the maintenance phase.
Second, I think the issue for del 17p is the short time to first relapse, even after receiving a CR. Even though that is the case, most doctors that I read indicate that the concept of treating to minimal residual disease negative (MRD-) applies, and believe that more induction and consolidation is appropriate, it is appropriate to try and get the best response that you possibly can.
Of the newer drugs, Dr. Jakubowiak's study in the U. of Chicago uses Kyprolis in the regimen: Kyprolis, Revlimid, dexamethasone (KRD) / autologous stem cell transplant (ASCT) / KRD consolidation and KRD maintenance. The early data is very positive across the board (including the cytogenetic abnormalities - CA's) for depth of response. They are at the phase where they do not even have really good numbers for PFS yet, however, it is already longer than the older regimens. The data is not yet in on overall survival (OS), but in general, improved PFS does translate to improved OS. So the early signal is that Kyprolis is good for all of the CA's.
Lastly the monoclonal antibodies (mab's), elotuzumab (Empliciti) and daratumumab (Darzalex), work on surface properties of the myeloma cells. The CA's are inside the cells. Early results are that they perform really well on the CA's. In fact, look at the new Msmart guidelines from the Mayo Clinic. They brings in elotuzumab-Revlimid-dex consolidation in the case of high-risk CA's. Speculation is that mab's might work equally well on the CA's, which would be a very good thing.
Good luck to you. Rgds
I don't know how far along you are in your research, but I thought I would share a couple of the things I recall reading about del 17p in the last year or so. Dr. Saad Usmani has published a study about a year ago wherein he used Revlimid, Velcade, and dexamethasone (RVD) maintenance post stem cell transplant for del 17p, and found significantly longer progression-free survival (PFS) than found in earlier studies. The RVD maintenance sounds like a lot, however, I understand that the dosage is lower and at a lower frequency of administration in the maintenance phase.
Second, I think the issue for del 17p is the short time to first relapse, even after receiving a CR. Even though that is the case, most doctors that I read indicate that the concept of treating to minimal residual disease negative (MRD-) applies, and believe that more induction and consolidation is appropriate, it is appropriate to try and get the best response that you possibly can.
Of the newer drugs, Dr. Jakubowiak's study in the U. of Chicago uses Kyprolis in the regimen: Kyprolis, Revlimid, dexamethasone (KRD) / autologous stem cell transplant (ASCT) / KRD consolidation and KRD maintenance. The early data is very positive across the board (including the cytogenetic abnormalities - CA's) for depth of response. They are at the phase where they do not even have really good numbers for PFS yet, however, it is already longer than the older regimens. The data is not yet in on overall survival (OS), but in general, improved PFS does translate to improved OS. So the early signal is that Kyprolis is good for all of the CA's.
Lastly the monoclonal antibodies (mab's), elotuzumab (Empliciti) and daratumumab (Darzalex), work on surface properties of the myeloma cells. The CA's are inside the cells. Early results are that they perform really well on the CA's. In fact, look at the new Msmart guidelines from the Mayo Clinic. They brings in elotuzumab-Revlimid-dex consolidation in the case of high-risk CA's. Speculation is that mab's might work equally well on the CA's, which would be a very good thing.
Good luck to you. Rgds
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JPC - Name: JPC
Re: Ready to say hello
Thank you so much JPC. While I'm vaguely aware of some of this information (particularly about Kyprolis since I was just moved to that treatment) I've not read such a nice summary of the issue and current research. While I don't have the depth of knowledge that you share, I've come to realize the del17p is just another challenge of this challenging disease and I have confidence my doctors are on top of it. It may been different or "more" treatments for me, but I still feel there is reason to believe I can have successful outcomes.
Thank you again for the great summary.
Thank you again for the great summary.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
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