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.