Hello Jay-
HOLD EVERYTHING! Docs almost always want to rush you to stem cell transplant (SCT)... Just like a surgeon who is always in a hurry to operate... It's what they do. My new oncologist heads the transplant department... What a surprise she always mentions SCT as first option. I have been on nothing but Revlimid now for over two years... Rev/dex one year during induction phase of my treatment before that. Waiting is a very viable option. Not best or right for everyone, but something to consider. This is a funny business. A SCT is much more invasive than using Revlimid or Velcade--unless you hit unexpected, serious side-effects. Then you can switch or always go to SCT. But things can go wrong during and after a SCT. Routine--yes. Walk in the park--no way! E-mail me directly if you like. FYI: A myeloma specialist at Mayo Clinic is currently doing a study of patients who decide to wait. So far, same results as those who go to transplant. Good luck--but Stage I no need to hurry- Pat
Note: If induction therapy (initial six months or so) is going well and your numbers come down, don't forget to get your stem cells harvested! You can use them later if and when you decide to proceed.
Forums
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Pat Killingsworth - Name: Pat Killingsworth
- Who do you know with myeloma?: I am a multiple myeloma patient
- When were you/they diagnosed?: April, 2007
- Age at diagnosis: 51
Re: transplant or novel drug
You might find this short piece of interest:
http://www.ncbi.nlm.nih.gov/pubmed/20345446
Good luck in whatever you decide!
http://www.ncbi.nlm.nih.gov/pubmed/20345446
Good luck in whatever you decide!
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Nanette - Name: Nanette "Deaux"
- Who do you know with myeloma?: My dear husband, Dominic
- When were you/they diagnosed?: Spring of 2008
- Age at diagnosis: 62
Re: transplant or novel drug
Again transplant is not the end all and be all. It's high dose IV melphalan -- nothing magical.
There is only one trial of early vs. late stem cell transplant and it was based on patients that only had options of essentially the same medications (melphalan, BCNU, vincristine, cytoxan, etc.). No IMiDs, no proteasome inhibitors, no HSP inhibitors, no HDAC inhibitors, nothing. Not surprisingly it showed that early vs. late transplant was about equal.
Now with new medications available, the question of when IV melphalan is more effective continues and remains unanswered.
And honestly I think Pat is right to question bias. If a doctor is paid or receives some other tangible benefit by the # of transplants s/he performs (i.e. if s/he is a "transplanter" and just assesses for transplant), this creates inevitable bias in his/her recommendations when the question of transplant is brought up. Sadly this effects the vast majority of cancer care provided in the U.S. since it's provided by private practitioners -- where each cycle of chemotherapy means profitable labs, physician visits, and drugs prescribed. Oncology remains a fascinating, fulfilling, but overall dirty industry.
There is only one trial of early vs. late stem cell transplant and it was based on patients that only had options of essentially the same medications (melphalan, BCNU, vincristine, cytoxan, etc.). No IMiDs, no proteasome inhibitors, no HSP inhibitors, no HDAC inhibitors, nothing. Not surprisingly it showed that early vs. late transplant was about equal.
Now with new medications available, the question of when IV melphalan is more effective continues and remains unanswered.
And honestly I think Pat is right to question bias. If a doctor is paid or receives some other tangible benefit by the # of transplants s/he performs (i.e. if s/he is a "transplanter" and just assesses for transplant), this creates inevitable bias in his/her recommendations when the question of transplant is brought up. Sadly this effects the vast majority of cancer care provided in the U.S. since it's provided by private practitioners -- where each cycle of chemotherapy means profitable labs, physician visits, and drugs prescribed. Oncology remains a fascinating, fulfilling, but overall dirty industry.
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Dr. Craig Hofmeister - Name: Craig C. Hofmeister, M.D.
Re: transplant or novel drug
I agree with Shay and Jay! I had my stem cells harvested after about four months. My M-spike was down from around 4 to a .4. I then went into CR a few months later. I asked a specific question about this earlier today under the general myeloma section. My oncologist tells me she feels odds are better to get transplant while still in CR--or close to it. My understanding is the same as Jay's--as long as cells are harvested in VGRP or CR, research doesn't differentiate between between whether you are in CR when you get your transplant or not--statistically, results should be the same. Stay tuned! Hopefully our friends from Ohio State will have an opinion about this- Pat
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Pat Killingsworth - Name: Pat Killingsworth
- Who do you know with myeloma?: I am a multiple myeloma patient
- When were you/they diagnosed?: April, 2007
- Age at diagnosis: 51
Re: transplant or novel drug
Though there were not (as in many cases) any definite conclusions to the article that Nanette linked, and though they did recomend to go for ASCT after novel drugs treatment, the article authors did wrote in thier conclusions:
"At present, despite promising data, we believe that candidates for ASCT should follow a treatment strategy that includes ASCT. ASCT can be delayed until relapse if facilities are available to harvest and cryopreserve stem cells early in the disease"
More food for thought.
Shay
"At present, despite promising data, we believe that candidates for ASCT should follow a treatment strategy that includes ASCT. ASCT can be delayed until relapse if facilities are available to harvest and cryopreserve stem cells early in the disease"
More food for thought.
Shay
Re: Transplant or Novel Drug
I was diagnosed (actually diagnosed myself) 71/2 years ago (I'm a hematologist) and had a tandem transplant followed by low dose Revlimid starting in 2005 (it was experimental then). I've been in a CCR for past 6 1/2 yrs. Recent bone marrow FISH and cytogenetics are all clean. My paternal aunt died or myeloma, and her son has MGUS. No one at this point says otherwise than continue Revlimid.
Barlogie long ago made the point that upfront tandems are the best way to have a long treatment free quality of life. I have few MD visits. He also made the point that since his results are so good the burden is one the non-transplanters to show they can do as well at 15 years in high risk patients before foregoing transplants. This makes sense to me and fits with my experience.
I was transplanted at MD Anderson and spent one night total in the hospital.
Barlogie long ago made the point that upfront tandems are the best way to have a long treatment free quality of life. I have few MD visits. He also made the point that since his results are so good the burden is one the non-transplanters to show they can do as well at 15 years in high risk patients before foregoing transplants. This makes sense to me and fits with my experience.
I was transplanted at MD Anderson and spent one night total in the hospital.
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Kingseason
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