› Forums › Mucosal Melanoma Community › Mucosal Melonoma
- This topic has 18 replies, 5 voices, and was last updated 14 years, 1 month ago by
J8cavan.
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- September 14, 2010 at 4:22 am
I am looking for information from other people who have had mucosal melenoma. Do to the fact that this is a rare aggressive melonoma I would like to find out about any level of successful treatments. I have completed 25 radiation treatments with the disease growing right through the treatments. I have tried ipi and temodar with continued growth. I am now on Carboplatin &Taxol and Avastin. Will do imaging in about 5 weeks to see if this is working. I have been to MD Anderson, Mayo Clinic Jacksonville and Moffitt Cancer Center in Tampa.
I am looking for information from other people who have had mucosal melenoma. Do to the fact that this is a rare aggressive melonoma I would like to find out about any level of successful treatments. I have completed 25 radiation treatments with the disease growing right through the treatments. I have tried ipi and temodar with continued growth. I am now on Carboplatin &Taxol and Avastin. Will do imaging in about 5 weeks to see if this is working. I have been to MD Anderson, Mayo Clinic Jacksonville and Moffitt Cancer Center in Tampa. I would just like to hear someone has found something to slow this stuff down or reversed it to ned.Thanks in advance for taking the time to respond.
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- September 14, 2010 at 4:36 am
You can find some people with mucosal here http://www.melanoma.org/community/mrf-bulletin-board/mucousal-melanoma
You spelled it correctly, but probably missed this discussion because of the "mucousal" spelling.
I have stage III mucosal. It can be fast-moving, but you must have been diagnosed for some time to do all those treatments.
The treatments that interest me the most are ipi, PL-1 and adoptive cell transfer therapy from the National Cancer Institute. There are no magic bullets.
Because it is so rare, everyone I've heard of with mucosal has been treated differently.
Hang in there!
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- September 14, 2010 at 4:36 am
You can find some people with mucosal here http://www.melanoma.org/community/mrf-bulletin-board/mucousal-melanoma
You spelled it correctly, but probably missed this discussion because of the "mucousal" spelling.
I have stage III mucosal. It can be fast-moving, but you must have been diagnosed for some time to do all those treatments.
The treatments that interest me the most are ipi, PL-1 and adoptive cell transfer therapy from the National Cancer Institute. There are no magic bullets.
Because it is so rare, everyone I've heard of with mucosal has been treated differently.
Hang in there!
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- September 15, 2010 at 2:48 pm
Early on in my diagnostic process, I was told that I might have mucosal melanoma – turned out to not be accurate. But in doing research, I found out the Gleevec is probably the most effective treatment for this typr of melanoma, but this is something about which you probably have been aware. Has not at least one Doc at one of the very respected institutions you have visited discussed this treatment with you?
Best Wishes,
Jim
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- September 16, 2010 at 5:01 am
Yes I have discussed Gleevec. I tested negative for the C-kit mutation so gleevec was not discussed further. My doctor said the drug companies want to hold down bad statistics so not much treatment has been done for negatve c-kit patients when the statistics were not good. This should be brought up with my doctor again. Thanks for bringing this up.
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- September 16, 2010 at 5:01 am
Yes I have discussed Gleevec. I tested negative for the C-kit mutation so gleevec was not discussed further. My doctor said the drug companies want to hold down bad statistics so not much treatment has been done for negatve c-kit patients when the statistics were not good. This should be brought up with my doctor again. Thanks for bringing this up.
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- September 15, 2010 at 2:48 pm
Early on in my diagnostic process, I was told that I might have mucosal melanoma – turned out to not be accurate. But in doing research, I found out the Gleevec is probably the most effective treatment for this typr of melanoma, but this is something about which you probably have been aware. Has not at least one Doc at one of the very respected institutions you have visited discussed this treatment with you?
Best Wishes,
Jim
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- September 15, 2010 at 5:54 pm
Take a look at Avastin. I took it for a year after a small trial group showed good results. Like many other cancer drugs, when the trials were expanded they didn't get the same results.
Article from yesterday
But the deal has also brought problems. The biggest disappointment has been top-selling cancer drug Avastin — the key asset acquired with Genentech, with sales of $6 billion last year — which has failed in clinical trials for prostate and stomach cancer and may soon have its U.S. license revoked as a treatment for advanced breast cancer. Members of a U.S. advisory panel said in July that Avastin's modest benefits in advanced breast cancer — it delayed cancer growth by up to three months but didn't extend patients' lives in studies — were not enough to justify the drug's serious side effects. A decision from the Food and Drug Administration is expected by September 17.
http://www.reuters.com/article/idUSTRE68E45L20100915
Just look into Avastin for yourself. I do not regret taking it Avastin it was a good decsion at the time.
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- September 15, 2010 at 5:54 pm
Take a look at Avastin. I took it for a year after a small trial group showed good results. Like many other cancer drugs, when the trials were expanded they didn't get the same results.
Article from yesterday
But the deal has also brought problems. The biggest disappointment has been top-selling cancer drug Avastin — the key asset acquired with Genentech, with sales of $6 billion last year — which has failed in clinical trials for prostate and stomach cancer and may soon have its U.S. license revoked as a treatment for advanced breast cancer. Members of a U.S. advisory panel said in July that Avastin's modest benefits in advanced breast cancer — it delayed cancer growth by up to three months but didn't extend patients' lives in studies — were not enough to justify the drug's serious side effects. A decision from the Food and Drug Administration is expected by September 17.
http://www.reuters.com/article/idUSTRE68E45L20100915
Just look into Avastin for yourself. I do not regret taking it Avastin it was a good decsion at the time.
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- September 15, 2010 at 9:39 pm
I am sure others have mentioned Jerryfrom Fauq to you. He is, no doubt, the most knowledgeable member when it comes to mucosal melanoma. He's currently off line due to a terrible horseback riding accident, but I am sure he would ask if you've had C-kit testing and he'd tell you to look into Gleevac.
Gleevac was tested and discarded for treatment of melanoma many years ago, but apparently it has a much higher success rate with mucosal melanoma
If you have the stamina for it, you can read Jerry's extensive treatment history on his profile page, here:
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- September 15, 2010 at 9:39 pm
I am sure others have mentioned Jerryfrom Fauq to you. He is, no doubt, the most knowledgeable member when it comes to mucosal melanoma. He's currently off line due to a terrible horseback riding accident, but I am sure he would ask if you've had C-kit testing and he'd tell you to look into Gleevac.
Gleevac was tested and discarded for treatment of melanoma many years ago, but apparently it has a much higher success rate with mucosal melanoma
If you have the stamina for it, you can read Jerry's extensive treatment history on his profile page, here:
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