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ErenR
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| Joined: | Sun May 24th, 2009 |
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Posted: Mon May 25th, 2009 12:43 am |
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Hi everyone,
My 63 yr. old father has been recently diagnosed with MM last Friday. He's in great health (relatively), but has 2 small fractures on the ribs already. The doctor said that his bone marrow biopsy showed he has 40% malignant cells, I'm not sure if that was exactly the terminology. He had an infusion treatment on Friday already, and he is going under an oral treatment; I have yet to receive the exact names of the medicine's because this just happened 2 days ago. The medicine the doctor mentioned my dad would take is a medicine that was used for fertility in Europe some time that caused birth defects, which makes me believe that is Revlin (from my research).
I am obviously overwhelmed with information, and I don't even know where to begin, but I need to know that my dad is taking the BEST BEST medicine that there is. I know it's hard to say because I don't have the names, but I am hoping to have it by Tuesday. In the meantime, if anyone has any information to share, PLEASE PLEASE reply.
Best,
Eren
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dpcaregiver
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Posted: Mon May 25th, 2009 03:17 pm |
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Hi Erin,
So sorry to hear about your dad's MM diagnosis. Mu husband (just turned 62) was diagnosed 7 months ago (70%). He completed his 2nd stem cell transplant on May 8th. We are being treated at Huntsman and following their tandem stem cell protocol. The only thing I can think to tell you is be sure you are seeing a Myeloma specialist (not just an oncologist). So much information on the internet is old and outdated and thus, very negative. If your dad is a transplant candidate you don't want to wait too long (get the cancer cells while they are still young and stupid about the chemo). Also, be cautious about reading the 'older' stuff. We try very hard to keep informed, but with the 'updated' info. Obviously we completely believe Huntsman's protocol and encourage everyone else to come here. They have the data and we've met the MM surviviors in person to back up the longer survival rate.
Best of luck to you and your family. Keep us informed--there are now people you've never met now prayring for your dad and family.
dpcaregiver
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DougC
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Posted: Fri May 29th, 2009 02:31 am |
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dpcaregiver covered it. I'll just add, the BEST BEST drugs mean little if not applied in a proven combination and schedule. Since I know the Huntsman is the best, you might consider starting there.
I wish you the best
Doug
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Chat Moderator
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Posted: Sat May 30th, 2009 06:21 pm |
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Hi Eren,
dpcaregiver and DougC already did an excellent job in covering this, and the main message I would emphasize is that a lot of the treatments that are less intensive (like thalidomide and revlimid without transplant) can yield good results initially, but unfortunately they usually only last for a short while. As dpcaregiver said, our approach is to hit the myeloma hard from the beginning when the cells aren't smart enough to have become resistant to treatment because they have not been exposed to treatment before. Then continue with maintenance therapy to kill any remaining myeloma cells that were sleeping, or out-of-cycle, and not killed by the chemo.
Our tandem transplant treatment protocol has yielded an average survival rate of 10 years or more for newly-diagnosed mm patients. While our initial treatment is more intensive than at many other centers, we have seen it really pay off in the long run. And the good news is that if he is currently in good health, that means he is more likely to be a good candidate for this treatment method.
Please let us know if you have any other questions. We're happy to help in any way we can.
Chat Moderator
Huntsman Cancer Institute Myeloma Program
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wendi
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| Joined: | Mon May 11th, 2009 |
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Posted: Sat Oct 17th, 2009 03:37 am |
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chatt moderator , is it true that a specialist in MM should be treating my mother , she was unable to get the tandum transplant because of her stem cells die off too quickly because of the cancer treatments she had for BC 13 yrs ago do you think a specialist could offer any additional options??
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Chat Moderator
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Posted: Mon Oct 19th, 2009 04:26 pm |
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Hi Wendi,
I definitely think your mother could benefit from seeing a myeloma specialist, especially if her current treatment does not seem to be working. That way she has someone who has been dedicating their career to fighting this disease on her side. Someone who has seen hundreds if not thousands of cases of myeloma and has been researching this type of cancer.
If you mother is indeed not a candidate for a stem cell transplant, then there are other treatment options a myeloma specialist can recommend. Don't give up. Seeing a specialist will give her the very best chance at having access to different treatment options.
Take care and let us know if you have any more questions. Your mother is so beautiful. Thanks for sharing the photos.
Chat Moderator
Huntsman Cancer Institute Myeloma Program
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