February 19, 2015 at 8:08 am #6982AnonymousInactive
I am a 57 year old woman who is in remission for 2 years now after a diagnosis of mucosal melanoma, primary loacation vagina. I have never found anyone with a like diagnosis and would love to set up a relationship to compare notes. So much of the back and forth that I read between people dealing with cutaneous melanoma sounds completely foreign to me.
Best wishes and hopes to all
February 19, 2015 at 11:29 pm #6987AnonymousInactive
I am another Mary and 5 years out from a stage 3 vulvar melanoma…rare but not as rare as vaginal melanoma! I was lucky enough to be treated only surgically And have suffered no long term problems…very very lucky!
February 20, 2015 at 8:24 am #6988AnonymousInactive
I am two years post surgery followed by chemo. Next week I go for scans again, and as usual my anxiety is through the roof.
Happy you are doing well.
February 20, 2015 at 10:30 am #6989AnonymousInactive
I’m curious as to where you are being treated? I had surgeries in Vancouver with never any suggestion of chemo. I was told there was no point in scanning as nothing could be done if disease progressed. Not very reassuring!
Lots of progress in the last few years…what kind of chemo did you have?
February 20, 2015 at 12:00 pm #6990AnonymousInactive
My treatment has been at Sloan Kettering in New York. When I was diagnosed in Albany, NY the oncologist told me that he had only seen mucosal melanoma twice in his career and he did not feel comfortable treating it. He wanted me to go to Sloan to get immunotherapy.
When I got to Sloan, the tumor was sequenced and I was determined to be BRAF negative wild type. The only immunotherapy available was ipilimumab which is not very effective on mucosal melanoma and is used more on BRAF mutation patients. The oncologist said put me on a chemo regimin of temodar and cisplatin, based on one study of 186 patients in China where mucosal melanoma is more prevalent. He also said that had I come to him six months earlier, he would have had nothing other than surgery to offer me. Now, they cannot tell me if it was the surgery or the chemo that helped me.
Now, thankfully, I have a new oncologist at Sloan because my first one was unable to hold a conversation which is tortuous for someone like me who has to understand everything. The last time the new one called me to tell me that my scans were clear, he said that even if they had not been clear, there were many, many things they could try. He also said when/if the cancer comes back I will be getting immunotherapy – most likely PD-1.
I understand your concern about no followup – and I completely disagree with the statement that nothing can be done if the disease progresses. That certainly not the message put out by current science. Knowing that there is help for me when it comes back motivates me to have the recurrence diagnosed as soon as possible to improve the chances of the therapy succeeding. If I were you, I would consult with an oncologist who is up on the current science and ask what you should be doing. On the other hand, five years out is pretty awesome!
February 20, 2015 at 11:34 pm #6991AnonymousInactive
Yes indeed five years out I feel incredibly lucky! To be fair the vancouver Gynae-oncologists did send me for a radiation consult as the margins clear from the tumour were very close. The radiation oncologist ( who had never dealt with mucosal melanoma) advised against…a very good call in retrospect. I also agitated enough to be sent to a consult with a melanoma specialist in another province….who had nothing to offer for stage 3 at that point.
It is very important to self-educate!
Were you stage 3 then that you had temodar and cisplatin?
I do hope you get through your scans with as little stress as possible.
April 9, 2017 at 11:40 am #12700AnonymousInactive
I’m not sure if you are still active here’s but thought I’d try to connect.
I too have mucosal melanoma that started in my vulva. I’ve had many surgeries and after 6 years cancer free I’ve had a recurrence that is now in my vagina. I’m in the process of going through the scans and tests to determine the extent of involvement but am really struggling with my anger at my dermatologist (and myself) for not being more insistent that something be done about this sooner. My dermatologist really didn’t think that the growth we have been watching was anything concerning and after finally doing a biopsy at my request after watching it grow for several months it came back with MM again.
It’s so hard to know who to trust and you are right we really have to be our own best advocate.
This is such a rare type of cancer…. I wish I had known about this group years ago.
February 21, 2015 at 11:26 am #6992AnonymousInactive
I was Stage 3 at the initial diagnosis.It was difficult at Sloan because everything is so departmentalized. I met with the surgeon initially, had the surgery and had the post op appointment with the surgeon all before I met with the oncologist who could tell me what was going on. I went from an abnormal pap smear to a surgeon who, when I asked him if I was dying, told me that it really sucked. At the followup appointment he told me that I had late stage cancer and that Sloan Kettering would keep me alive as long as they could. I did not accept that then, and do not accept it now.
I don’t know if you are interested in web videos, but there is a wonderful one in Science with Jed Wolchok talking about immunotherapy. I also look on a website called ecancer which posts news on all types of cancers, and when I see something that interests me it points me in that direction. Mucosal melanoma is a tough one because there is so little written on it, and what does get written gets overshadowed by the cutaneous melanoma stuff.
I enjoy communicating with you.
February 22, 2015 at 9:40 pm #6995AnonymousInactive
I will have to check out that you-tube channel, thanks.
Do you know about MPIP ( Melanoma Patients Information Page)? There is some one who posts on that discussion board who has had long term remission from stage 4 mucosal melanoma ( anal) due to gleevac. It’s always uplifting to hear about the success stories 🙂
February 22, 2015 at 9:44 pm #6996AnonymousInactive
Oops, that’s ecancer.org, not a YouTube channel!
February 23, 2015 at 8:27 am #6997AnonymousInactive
Jerry, if I am not mistaken. He is great for posting interesting links to current research. He contacted me personally one time asking if I was interested in a Facebook page for women with vaginal and vulvar cancers, and I did join, but I am just not a Facebook person. If you are interested, I can try to send you a link.
August 20, 2017 at 9:48 pm #14096AnonymousInactive
Are you still active here? I would be interested in the link for the vulva cancer Facebook page.
Also where did you have your treatments and surgery etc?
Thanks in advance
August 14, 2015 at 4:22 pm #7520AnonymousInactive
My cousin was recently diagnosed with oral mucosal melanoma. Do you know of any specialists/centers in Canada that have experience in treating this cancer? Thanks so much for your help!
February 3, 2016 at 5:38 pm #8666AnonymousInactive
Hi there, How’s your cousin doing? My husband was diagnosed with oral mucosal melanoma. it’s a devastating diagnosis.we did the surgery at princess margaret hospital.Radiation therapy is not effective for mucosal melanoma. does your cousin live in Toronto?
All the best
January 16, 2016 at 4:20 pm #8650AnonymousInactive
oh its very bad.Try to contact asap with your nearest consultant.
February 3, 2016 at 5:37 pm #8665AnonymousInactive
All the best
February 3, 2016 at 6:00 pm #8667AnonymousInactive
We live in Vancouver. My cousin couldn’t find any treatments in Canada that did not require extremely drastic surgery (they said they had to remove his gums). There’s a center in the US that seems to have experience but the costs are way too high. So he went to Shanghai to seek treatment as they are more familiar with oral mucosal melanoma in Asia. They had a cryotherapy treatment there that seemed to be quite effective. He had to do a couple sessions every three months I believe. He came back to Vancouver recently and all the black patches have disappeared and he is in good health. We’re not sure how long he can maintain his current state, but all looks good so far. He still has to go back for treatments every three months though. Hope your husband is recovering well from surgery and I hope it wasn’t too invasive. Best of luck!
February 3, 2016 at 6:16 pm #8668AnonymousInactive
Wow that’s amazing to hear your cousin chose that path. Surgery was really invasive here and my husband first said no and started alternative treatment. Melanoma got way smaller after we did alternative therapy but unfortunately went to his lymph nodes. At that point did we had to do the surgery but less invasive this time. Due to shrinkage of melanoma. He was clear for 6 months but we just got the news that it’s back on the same spot:( now we are going to get treatment outside Canada and do virus therapy that seems to be very effective on melanoma. So stressful. Glad your cousin didn’t do surgery or chemo or radiation. I look into that therapy as well. Seems very effective. Thanks for responding back and all the best to you guys
April 10, 2017 at 9:24 am #12702Annette CyrParticipant
I am hoping that a few of the mucosal melanoma patients are still active on this site for you. I stay in touch with one family whose elderly mother has had it and in a last ditch effort, she was put on immunotherapy in summer of 2015. I just spoke to them a week ago, and she continues to be a responder, although she is having some side effects from the drugs. There is some hope that the anti-pd1 drugs will help some muscosal patients, so keep that in mind. And so sorry about the delayed diagnosis. We often hear that melanoma was missed and that can be so hard to deal with. We do have a peer support program if you are interested. Hoping another patient will respond for you!
Annette – MNC
April 11, 2017 at 1:17 pm #12747AnonymousInactive
I am one of the “others” ha ha. I was diagnosed seven years ago with stage IIIA Superficial Spreading Melanoma. For me it was obvious, I could see a changing mole so I hope you don’t mind if I ask how or what brought about your diagnosis?
August 20, 2017 at 9:53 pm #14097AnonymousInactive
Can you tell me about your treatments for your melanoma? I’m meeting with doctors this week and would like to know as much as I can about what my options might be
April 11, 2017 at 2:06 pm #12752AnonymousInactive
I was first diagnosed 10 years ago after my pap and they noticed what they called some freckles! I had to insist on a referral to a specialist and after several months of wait lists etc I was diagnosed with MM in my vulva. I had a series of Mohs surgeries and eventually a Vulvectoma 6 years ago. I recently had a recurrence and am back on the path for a second time. This time around my dermatologist wasn’t at all concerned about a new growth and he had a fancy name for it. I trusted his opinion and we watched it for several months before I finally told him it needed to go. He biopsied it and we were both shocked to learn that it was MM again. Sigh! I’m not a happy camper at all but was referred back to the cancer centre (I live in Alberta) and feel very well taken care of there. The poking, prodding and waiting has begun again to find out the extent of involvement this time.
A lesson to be shared….. never become complacent with anything you have concerns about.
August 21, 2017 at 10:29 am #14100Annette CyrParticipant
Hi Judy – I don’t know if Mary is still active on the forum. I don’t know where you are being seen, but I hope it is at a major treatment centre, because as you know, this is a rarer form of melanoma and can be difficult to treat. I know at Princess Margaret in Toronto they have been doing some clinical trials using some of the new immunotherapies. I believe on e of the patients I had spoken to had been treated with either nivolumab (Opdivo) or permbrolizumab (keytruda). You can look up both of these therapies on our website under treatment. Effectively they work to wake up the immune system to try to identify the cancer and attack it. Both are pretty easy to tolerate on their own and side effects aren’t as much as you would see with chemo. However, first steps are normally surgery to remove, if they can. Then they look at treatment options. While there is no silver bullet, it will depend on how early they have detected your MM and staging of it before they will suggest a treatment pathway.
I am hoping someone with MM will respond to you. In the meantime, I hope you are being seen at a centre of excellence and that they are able to provide some good options for you. I am sure it is so scary and stressful just waiting and not knowing, but hoping you will have some answers this week. Best.
-Annette – MNC
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