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chendy7804
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Joined: Wed Sep 16th, 2009
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 Posted: Thu Sep 17th, 2009 03:07 am
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I've been diagnosed with multiple myeloma stage 3 about 20 months ago. I used revlamid and dexamethesone to lower my kappa light chains down to 800. It remained at that level for about 6 months. My doctor was in no rush to move me on to another treatment so I didn't do anything. I read somewhere that the most effective treatment was a tandem cell transplant so I decided to have the transplant. That was 3 1/2 months ago and my blood work has come back with a complete response. Right now my Kappa light #s are at 11. My doctor says that if I want, he would perform another transplant but he wouldn't recommend it because the treatment would be redundant. I have a complete response so it won't get any better. My other choices are: to do nothing and keep my condition monitored or put me on a maintainance program of revlamid 10mil. then down the line move up to 15. He seems to be leaning toward this treatment because I had such a great response to the revlamid and  had no major side effects. He's leaving this decision up to me and I don't know what to do. Any input would help. Thanks. Carl

Last edited on Fri Sep 18th, 2009 03:44 am by chendy7804

simmons9380@bellsouth.net
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Joined: Thu Jul 30th, 2009
Location: Mississippi USA
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 Posted: Thu Sep 17th, 2009 01:52 pm
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Carl,

Where did you have your tandem transplant done. You sound like everything went so well. How long was it after you were diagnosed that they thought it best for you to get the tandem stem cell transplant. I am so happy for you that you are doing so great it is wonderful when I read things like this it gives me hope and helps me to know a lot more than I do. I was diagnosed in 2008 and I have had radiation on the skull for my tumors. I am in process of neurosurgeon doing some more test in the next few days and weeks.

Ann

simmons9380@bellsouth.net

chendy7804
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Joined: Wed Sep 16th, 2009
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 Posted: Thu Sep 17th, 2009 11:32 pm
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Sorry that you misunderstood. I didn't have a tandem transplant. I just had the one.

Now I'm at the point where I seeking advice on what I should do. I've had a single transplant after about 17 months. Why I took so long to have the transplant was I was doing well on revlomid and dexamethasone and my doctor made it seem like there was no rush to move on to another type of therapy. Why I had a transplant was I read how successful tandem transplants are doing so I made the move. Now after 1 transplant and a complete response my doctor says he will do another transplant but feels its not necessary because my result was so good. I can go on a maintainace system of revlamid, do nothing and wait and see, or do another transplant. I wanted to get some imput on what other people were doing and what was successful.

Last edited on Fri Sep 18th, 2009 05:22 am by chendy7804

Chat Moderator
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Joined: Tue Oct 9th, 2007
Location: Salt Lake City, Utah USA
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 Posted: Fri Sep 18th, 2009 12:46 am
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Hi Carl,

It's great to hear that you've had such a good response treatment!

The Myeloma Program at Huntsman Cancer Institute believes two transplants are better than one because we have seen that in some patients it's possible to have residual myeloma even with a complete remission after one transplant. This means that there is still myeloma lingering in the body, but it is at a very low level that is not detectable through testing at the time.

There is a possibility that this lingering myeloma that wasn't detectable becomes active again after a period of time and causes problems.

Therefore, we believe that doing two transplants (and subsequent maintenance therapy) gives patients the very best chance at success and at killing all traces of myeloma so it is less likely to come back. We want to do everything we can to achieve that and not later regret only doing one transplant and not catching all of the myeloma.

This is an aggressive approach to treatment, but we've seen excellent results in our patients.

Please let me know if you have any other questions.

Thanks,

Chat Moderator
Huntsman Cancer Institute Myeloma Program


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