hi has anyone else been diagnosed with mucousal melanoma?
Hi Sam Sorry about getting back to you so late. I had an anal melanoma removed in 2008. Shortly thereafter had mets to the liver and groin, I did 2 rounds of IL-2 and 27 weeks of chemo. No good results. I have been on a Yale clinical trial of XL-184 for about six months now, no new growth. Stable. Hopes this helps you. Good luck.
Is there anyone who has mucosal melanoma in the nasal cavity? My husband has been diagnosed in february, had surgery in March and 6 weeks radiotherapy afterwards. Now the melanoma has come back!
I just found your post. i would email you, but the listing of email addresses seems to be lost with the new updates to this bulletin board. My Email is firstname.lastname@example.org. i will be glad to talk with you both by email and telephonically.
I was misdiagnosed by my local GP for over 3 1/2 years for a mucousal melanoma that I complained about at least 10 times betweem 2002 and 2006. (See my profile for much of the story.)
The C-kit tests are twofold. The first test is one that can be performed at any lab. This is a simple stain test that indicates if the c-kit oncoprotein is present on the tumor. The second and more important test if the first is positive, is to determine which C-kit DNA mutations may be present in the tumor cells. This is a specialized test that can be done in very few labs. The Oragen is the one that initially developed the test.
If one is positive to both tests, then there is a 50% chance that Gleevec will have a positive effect on the tumor attack. My tumors went from wild growth to stable within 30 days of starting the Gleevec and has remained stable for 18 months now.
There is a secondary target drug now beomng tested, Dasantib. I have a friend with the same problem as we have that has recently joined this clinicl trial. She has had one scan and two of her tumors can no longer be found. There appears to be a tumor in one of her glands that we will learn the status of from her 10/12 scan.
Please contact me if we caan be of further assistance to you.
I'm me, not a statistic. Praying to not be one for years yet.
Hi Jerry Welcome back. I heard about your accident early on. Hope you are feeling well.I am glad to hear your disease has remained stable.Are you still on Gleevec. I tested negative for C-kit. I am still on the XL-184 trial. I had to have a dose reduction twice due to side effects. I am interested in hearing more about this Dasantib trial. Where is it being offered and do you have to be positive for C-Kit? Is your friend stage IV. My e-mail address is Roseann.email@example.com.
I am sorry that I haven't updated everyone.
Margaret had 3 high dose radiation treatments given vaginally, ending on October 20. She has been very uncomfortable, but is healing. They will do reconstruction in about a year.
They are doing a double radical mastectomy next week for the breast cancer. It was caught when they did the PET scan and is very small.
They will be going another PET in about 8 weeks, and one every 4 months thereafter. It seems that all we are to do is wait and hope.
Genetic testing came back negative.
Margaret had PET and CAT scans last week. It's back. They did not sample her lymph glands when they removed the tumor, which I thought was generally done. Our general oncologist seemed surprised and upset at the time. She has 6 tomors in the glands around a kidney, and a tumor in a gland near her pelvis. The radiologist who read her scans is a close friend. He said that the PET indicated that the cancer was still localized. Her records have been sent to Dr. Kim at MD Anderson. We are going to see him in two weeks. I beleive they are considering surgery out there followed by bio-chemotherapy, which I assume is immunotherapy with interleukin, or something like that. I was trying to process all the things that were being said, and am not sure I got it right.
Sam I am so sorry to read that your wife's scans found additional tumors. I think you are doing the right thing to be seen at MD Anderson and hopefully surgery and immunotherapy will take care of those new growths. My husband is also in the fight against mucosal melanoma and he is holding stable right now on interferon. I will pray for your wife to have a good response to whatever treatment MD Anderson suggests for her. Keep strong and know that you are in our thoughts. Valerie (Phil's wife)
If this online community is valuable to you, please consider making a tax-deductible gift to support the MRF.
Get updates on melanoma research, education & advocacy
-View the Melanoma Patient Guide
-Questions to Ask Your Doctor
-Email the MRF Nurse
-Get matched with a Phone Buddy
-View the Melanoma Glossary
Meet and talk to others about melanoma in our forums:
See also: History of the MPIP Forum
–Ocular Melanoma Forum
RIDE through Sunshine Canyon (multiple times!), ROCK out at a concert after the ride and RALLY with other melanoma advocates in the iconic foothills of the Rocky Mountains!
Conquer melanoma and Ride. Rock. Rally. in Sunshine Canyon!
1411 K Street, NW Suite 800
Washington, DC 20005
(800) 673-1290 Office
(202) 347-9678 Fax
The Melanoma Research Foundation (MRF) is leading the melanoma community to transform melanoma from one of the deadliest cancers to one of the most treatable through research, education and advocacy.
The Melanoma Research Foundation is a 501(c)(3) non-profit organization.