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carole p
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Posted: Wed Jan 28th, 2009 05:27 pm |
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i recently received a copy of results from a study by Reuters Health published in the Journal of the National Cancer Institute on January 21, 2009 which stated that there was no evidence to support double autologous stem cell transplants and that, in fact, the treatment related mortality rate was higher in double transplant patients.  Perhaps the staff at Huntsman would care to reply to that study, since many of us patients do not have the skills required to interpret the validity of scientific studies. We may be lead to choose a less effective treatment protocol based on this interpretation of data. I am a patient who has received a double transplant under the care of Dr. Tricot and extremely pleased to be nearing 5 years of complete remission.
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Posted: Wed Jan 28th, 2009 11:04 pm |
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Hi Carole,
Yes, we are indeed aware of this study and were rather surprised to see it. We wondered immediately what data the study could be based on, since our own research on tandem transplants has shown clear benefits and shown a median survival rate of 10+ years, which we think is very exciting news for myeloma patients. Of course, we should never be truly satisfied with 10+ years and continue to do studies to keep improving these survival rates and ultimately find a cure, but the results of our studies have truly shown the effectiveness of tandem transplants.
For anyone who may not be immediately familiar with what “tandem” transplants means, it simply means having two transplants rather than one.
At Huntsman Cancer Institute, we are strong advocates of tandem transplants, so it’s only natural that after this article came out people would wonder what exactly is going on and what research to believe.
The director of the HCI Myeloma Program, Dr. Guido Tricot, is currently working on a formal response to the study, but I can give you a more informal response today here on this message board and then later show you his formal response, too.
The research paper was based on 6 studies. There was one in particular that they argued really showed that tandem transplants were not any more beneficial than single transplants and only lead to a higher mortality rate, and it turns out that this study was done in Tunisia. It’s really hard for us to adequately compare our studies that have been done in the United States to a study done in Tunisia, since studies in this North African country are simply not monitored the same way as they are in the United States. If the study was done in the United States or even Europe, we would know more about the quality of care and the quality of the clinical research, but it is not.
Two other studies used in the paper were presented at meetings in 2005 and 2007, respectively, but have never been published, and we think it’s likely that they were never accepted for publication because of problems with the studies.
Another study the paper referenced was not really a tandem transplant study. They gave all patients two doses of melphalan at 70 mg/m2 without giving stem cells. Then, patients in this study were randomized to receive a transplant or not. Even the patients that did receive a transplant only received one and not two, so this study doesn’t really say anything about tandem transplants. Furthermore, those who did receive transplants had a preparative regimen of total body irradiation and cyclophosphamide, something we do not give. That regimen is indeed not very effective in treating myeloma and is indeed associated with a high-treatment mortality. (It was 10% in this study.)
For the reasons mentioned above, we think this paper has some major flaws in research and does not truly prove that patients are better off with just one transplant rather than two.
We see so many of our patients benefiting from tandem transplants versus a single transplant and enjoying a long period of remission and overall good quality of life. We hope patients will consider the studies that have been done by researchers here in the U.S. proving the effectiveness of tandem transplants when making a decision about their treatment.
If anyone has any further questions, feel free to ask.
Thanks,
HCI Myeloma Program’s Chat Moderator
(posting on behalf of HCI Myeloma Program staff)
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DougC
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Posted: Thu Jan 29th, 2009 01:07 am |
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| Wow, nearly 5 years complete remission.........I want some of that! Congrats carole p! I'm with you, I have total faith in Dr. Tricot and his work. I hope it works equally as well for all us. Cheers to another 5 and another and another....................
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carole p
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Posted: Thu Jan 29th, 2009 02:27 pm |
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| remission will be yours too since you are in good hands. livestrong and livelong!
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Posted: Wed Jun 17th, 2009 09:07 pm |
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Here's an update on the status of this study. Some data cited within the paper to make the main argument against tandem transplants turned out to be false and that research paper has been retracted:
http://www.huntsmancancer.org/groups/myeloma/researchNews2.html
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carole p
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Posted: Thu Jun 18th, 2009 09:21 pm |
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| many thanks for the e-mail with the latest update regarding this study. i am infuriated once again about that study that mis-lead several folks that i know of in the myeloma community who took that report as the "definitive" answer to the question of whether or not to have a single or double transplant. wow, a retraction in "Blood"! all i can say, once again, is that i am so grateful to dr tricot for always being at the "top of his game". i thank all the staff at huntsman in their efforts to find a cure for myeloma and extending our lives in the face of this disease.
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denesepete
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Posted: Thu Jun 18th, 2009 10:06 pm |
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We too are outraged at this study that was not a study at all. Thankfully, we have been treated by Dr. Zangari at Hunstman and my husband just completed his 2nd transplant (now in remission). How many people (at least 2 I personally know of) did NOT go the tandem stemcell transplant route because of that bogus study? I believe that there are MM patients who will not have the outcome they could have had because of bad information.
That being said, we were aware of this study last January, but did not give it much credence since it was not from the US, so hopefully most others newly diagnosed with MM at that time saw who did the study and kept researching. We will probably never know how many people this bad research has or will affect negatively. We are so very thankful to have Dr. Zangari and Tricot in our corner.
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DougC
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Posted: Fri Jun 19th, 2009 01:43 am |
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Congrats on the remission, that's excellent news!
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Posted: Fri Jun 19th, 2009 06:36 pm |
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I second that! Congrats to you and your husband for making it this far through the treatment and achieving remission! Great news!
Another update on the tandem transplant study. The Journal of the National Cancer Institute has now published Dr. Tricot's formal response citing the issues he took with the study:
http://jnci.oxfordjournals.org/cgi/content/full/djp127?ijkey=gvb8TxjDQf8V5Jk&keytype=ref
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caringcousin
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Posted: Fri Oct 9th, 2009 12:02 pm |
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please review my post (10/7/09) re my cousin - do most of your tandem transplant patients receiving on-going treatment after transplant to keep them in remission? have studies shown that without follow-up treatment, relapse is more common or does it not matter?
Desperate to find answers to see if there is anything else we can do at this juncture.
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Posted: Fri Oct 9th, 2009 08:45 pm |
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Hi,
I've responded to your need help for relapsed cousin post. Please let us know if you need anything else.
Chat Moderator
Huntsman Cancer Institute
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