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Corvette
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| Joined: | Fri Jun 12th, 2009 |
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Posted: Thu Jun 18th, 2009 04:34 pm |
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I just completed my auto transplant early March of this year. I am being treated by an MM doctor. I had a very good response with a small amount of disease remaining. The plan was to do another Auto within 3 or 4 months. However, my lab numbers are already starting to creep up. I had 3 monthly labs since the auto and my Free Lamda numbers are 131, 135, 161 respectively. I have no M spike in my serum since I have Bence Jones. My urine M-Spike in the last 3 labs are 28, 40, 100 respectively.
Question: I understand there are 2 schools of thought regarding a second auto: If a patient does well on the first auto proceed to a second auto. The other school of thought is only if a patient doesn't do well on the first auto then proceed to a second auto. My doctor is of the opinion if my numbers continue to go up, then a second tranditional auto may not recommended. However, I may be a candidate for a second auto with a stronger combination chemo or just do maintenance.
What is the philosophy at Huntsman regarding the criteria for a second auto? Other comments please.... Thanks.....
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denesepete
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Posted: Thu Jun 18th, 2009 10:15 pm |
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Dear Corvette;
Any MM is TOO MUCH from what we have learned. Dr. Tricot has a video from a seminar he recently held (within the past few months) that talks about getting the MM cells why they are young and stupid and have not had a chance to learn about the chemo. I was at that seminar and continue to be greatful to be going the route of the Hunstman (Tricot and Zangari) protocol. No, the transplants aren't fun, but we (my husband) are certainly glad we went with the tandem approach at Huntsman. Not only tandem transplant but a minimum of one year maintenance chemo and treatment. Please check out the information Huntsman has on the most recent seminar--helps make sense of why and how. As of last week, my husband is in remission and beginning his maintenence therapy. We expect 10 + years of healthy, normal lifestyle before we have to deal with this monster again.
Good luck to you whatever decision you make.
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DougC
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Posted: Fri Jun 19th, 2009 01:54 am |
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I've been reading those two different schools of thought since I was diagnosed. All I can say is, Dr. Tricot put me in complete remission before I even had a transplant. His first challenge with me was knocking a tumor off my spinal cord. He used chemo instead of radiation...thank goodness. The chemo did the trick, and more.
Following through with his program took nothing more than believing in him...and he makes that very easy. He explained why I needed to keep leaning forward. When I started to question my commitment, his research and medical staffs helped put me back on track. You'll not find a better team, period.
I'm also Lambda light chain MM and I've been in complete remission since Jan 08.
Without hesitation, contact the Huntsman Myeloma Clinic for a consult.
My very best to you
Doug
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denesepete
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Posted: Fri Jun 19th, 2009 02:08 am |
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Doug,
you said it all!!! If we could only convince people to go where we have been there would be many more long term MM survivors. With a lot of prayers and Huntsman, my husband, and you are now one of them.
denese
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Chat Moderator
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Posted: Fri Jun 19th, 2009 06:57 pm |
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Hi Corvette,
On behalf of Huntsman Cancer Institute's Myeloma Program, I'll say that we believe treating multiple myeloma aggressively on the front end is the key to long periods of remission, a longer life, and a better quality of life for multiple myeloma patients.
If you hit the myeloma cells hard at the beginning, they will not know what’s coming to them. Whereas, if you take the approach of starting off with less aggressive treatment and only moving to more aggressive treatment if a patient relapses, the myeloma cells have in the meantime grown smarter. The myeloma cells sense that you are trying to get rid of them, and they have time to grow resistant to treatment. Treatment will therefore ultimately be less effective.
We typically treat multiple myeloma with a regimen involving tandem autologous stem cell transplants and maintenance therapy thereafter. This treatment method has been proven to result in median survival rates of 10+ years.
The important thing to stress, though, is that it's not just about having two transplants in general. It's really about the drugs you use and in what combination you use them within the treatment regimen. That, coupled with tandem transplants and maintenance therapy, is what has led to the successful outcomes in our research and experience with myeloma patients.
Please let me know if you have any other questions, and we wish you all the best with finding a treatment that is right for you.
Myeloma Chat Moderator
Huntsman Cancer Institute Myeloma Program
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Corvette
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Posted: Tue Jun 23rd, 2009 02:41 am |
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Thanks for all your comments. I am not questioning the philosphy of a tandem auto, I agree that a tandem is effective (and so does my Doc). To be more specific with my question, would I qualify (under the Huntsman criteria) for a second auto when the results from the first auto were initially very good but only lasted 2 months before my numbers started to trend up implying a less than desirable results?????
Maybe this question is more targeted to the moderator, but any and all comments are welcome??? Thanks.....
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Chat Moderator
Administrator
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Posted: Wed Jun 24th, 2009 10:13 pm |
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Hi Corvette,
I wish I could answer this for you even in general terms, but whether or not you would qualify really depends on a number of factors. We'd need more info on the characteristics of your specific type of myeloma (through some testing). Nothing you've said here, though, means that you would automatically be disqualified, and it's probably more likely that you would be a candidate than not. One of our myeloma specialists would need to see you in clinic to give you that answer.
The fact that your good results with one transplant did not last very long is the reason we recommend two back-to-back transplants for the treatment of myeloma. Our research has shown that having back-to-back transplants leads to longer periods of remission. If the myeloma is not treated aggressively enough on the front end, you can have good results initially but they many times are short-lived. What happened in your case is not unusual.
Please let me know if you have any more questions.
Take care,
Myeloma Chat Moderator
Huntsman Cancer Institute
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