Mucosal Melanoma

My aunt (at age 60) was diagnosed with vaginal mucosal melanoma in Dec, 2005 at which time the mass was removed.  She then had an additonal surgery to remove more tissue around the original tumor site.  She began taking Interferon (5 days/week for 4 weeks - followed with 3 days/week for 8 months).  In October, 2006 the disease had metasized to the liver.  She was put on Temador from Jan 07 to Apr 07.  The next scan in Apr 07 showed the disease had spread to her lungs and the original tumors had increased.  She began taking Taxol and Avastin in May 07 and the tumors were decreasing.  She was on Taxol and Avastin from May 07 to Apr 08.  The April 08 scan showed the Taxol and Avastin was not decreasing the tumors anymore.  She was then put on Carboplatin and had 2 treatments.  The Carboplatin caused a severe decline in her platelets, resulting in 2-3 platelet transfusions.  Her WBC and hemoglobin suffered as well.  She missed treatments due to the side effects.  Her last scan was June 26, 2008 and her tumors had increased.  She has now been prescribed Gleevec, but the doctor doesn't seem to think it will work.  I noticed your message was dated 09/19/07, but we just recently found this site.  Please reply with any info.  I hope your father in-law has continued to fight and is winning.

God bless you!

On 9/19/2007 kladvocate wrote:

I have become my father in law's patient advocate and have read almost all clinical trials for melanoma where mucosal melanoma isn't on the  'exclusion' list! He is stage lV with mets in the lungs and liver and a primary location recurrence in the rectum.

It's hard to find the right treatment when different doctor's have different approaches.  One specializes in chemo, another in immunology etc. So I've researched both. I am sharing this information in the hope that anyone out there dealing with the disease, caregiver, advocate or patient might reach out and post their insights in how they're dealing with it.

Right now, there is a Doctor out of Dana Farber in Boston (Dr. Hodi) who has taken a special interest in Mucosal Melanoma. I don't know of anyone else specializing here in the u.s. as it's such a rare disease.

We are on the West Coast (L.A.) and traveled to Boston to see Dr. Hodi. After a moment where my father in law almost became excluded, he is now 1 week in to his first cycle of a phase 1 clinical trial using sutent in treating mucosal melanoma. Right now Dr. Hodi is the prinicple investigator at Dana Farber. I will post results of his next set of scans.  He is on a 50mg dose.

We also managed to get him on a vaccination trial at the Hoag Center in Newport Beach (Califonia) under the care of Dr. Dillman. Their vaccination program is patient specific. Unfortunately they need a mass to grow a cell line and develop a vaccine.  This can take time and also has not been 'sold' as a cure but as a therapy to stop additional spread.  We found a mass (ironically pleased to see one that was so easily resected). But the vaccine can take up to 11 months to grow and that's only if they can successfully grow a pure cell line. So while that's going on we need a result with sutent.

We did look at Gleevec but Sutent has the potential to knock out more cancer and doesn't necessarily mean you need the 'kit' mutation.

But I'm already trying to find a b plan, c plan... etc.

Our endgame is to be able to get the vaccination, until then we need something. 

Please share any ideas. What tried, what didn't.

FYI - most patient/tumor specific vaccination programs are not being funded by big pharmaceutical.

My take so far... When selecting an oncologist, find someone who knows your specific cancer and hopefully find a researcher whose work is funded by donations.  That's not to say that a regular oncologist is bad, it's just a simple fact. Oncologists travel to conferences and select which trials they are interested in. They won't tell you of other options. It's up to us to find them and research them.

Until the Doctor's have worked out a cure, they are making educated guesses about treatment options which is why you see drugs like sutent being used in all kinds of different cancers, even melanoma brain mets.

Thanks and good luck to everyone dealing with this disease.