- March 15, 2017 at 10:55 pm
Just yesterday the doctor informed me that I have mucosal melanoma in my sinus (ethnoid). I had no symptoms, except for what I thought were sinusities–stuffy nose,slight nosebleed. now waiting for PET scan. Im in Richmond VA. Does anyone have any suggestions for support groups here.
Please let me know what I should research — everything is so overwhelming and in reading the posts, there are so many acronyms that pretty soon I am sure I will master.
What should I expect in terms of testing — they have the PET after which the treatment protocal will be set.
What are some cutting edge treatments out there? What should I ask the doctor? No idea what questions I should even be asking. It's been a roller coaster ride.
Any help and suggestions would greatly appreciated.
- March 15, 2017 at 11:36 pm
Hi Dina, my father has been diagnosed with mucosal melanoma in the sinus since 2007. It started out as an stuffy nose and then a nose bleed as well – total surprise. I think the best move we made was to get treated at a major institute if you can. We're fortunate to live in Houston, TX and have good insurance and are being seen at MD Anderson.
PET and CT and MRI are pretty standard tests to have. My dad was treated with sinus surgery to get clear margins, some radiation to the sinus and neck (he did have 1 micromet in a lymphnode shortly after his first surgery) and some targeted treatment since he had the cKit mutation. The cKit test is something you may want to ask your doctor about. My dad usually has a CT or PET to check the body and MRI to check for local changes in the sinus. After initial treatment, he had scans every 3 months for 2 yrs to monitor, and then it tapered off to every 6 months.
I found this forum on day one since my dad was diagnosed and visit everyday when I can. You'll get into all the jargon in no time. This forum has been an indispensible source of encouragement and information. I'm normally more of a silent reader, but your post made me want to respond. Try to avoid doing too many web searches and read into old articles. The world of treatment has come a long way.
- March 16, 2017 at 1:53 am
Hi there, no, since it was just yesterday my ENT surgeon said that he would refer me to an oncologist, but I did not even ask if he/she was a melanoma specialist.
Good luck with everything with you as well. I hear that UVA's center center is amazing. Im in Norfolk since my Richmond ENT referred to Dr. Han. Should I also consider getting a second opinion for the treatment — at UVa ?
- March 16, 2017 at 1:37 am
Jackie, thank you so much for your reply — what you said was so try about going crazy on the web. Its been a rollercoaster of emotions — and also wonderful to hear about your father : really gave me hope. What I had been reading on the web and the statistics were stark with very grim statistics — it's really helpful to also know what will be at stake for me. I have a young son on the autism spectrum — and he's the light of my life: I feel that I have to fight for him.
I so appreciate reading this, and I can see this forum will be my support system. Once again, thanks for taking time to reply !
- March 16, 2017 at 12:25 am
#1: get a melanoma specialist, that is a melanoma oncologist who only sees melanoma patients, is a must. Usually found at univeristy/research hospitals. (Ignore if you've already taken that step). Depending on what stage you are will depend on treatment options. Did you have surgery, was it removable? Top immunotherapies are Ipi/Nivo (Yervoy/Opdivo) and Pembro (Keytruda) and those are given to stage 4 or unresectable patients. Ipi (Yervoy) is an approved adjuvant immunotherapy that is given when the cancer has been removed. Clinical trials are sometimes a good option too. Most mucosal mels don't have the BRAF mutation, but you should be tested for all mutations anyway. Those with BRAF mutation have other targeted treatment options as well. NRAS and C-Kit are more common mutations for mucosal patients. Hoping for a good scan report for you and I hope this forum is of help, it can feel crazy and confusing and lonely in the beginning.
- March 16, 2017 at 1:42 am
Great suggestion: I'm at Eastern Virginia Medical School/Sentara in Norfolk, and my ENT Dr. Han said that he would refer me to an oncologist : don't know if he's a melanoma specialist. I will definitely do that.
Waiting for the PET scan results so staging has not been done : just the biopsy from my nasal passages. Drs. have proposed to have surgery depending on what the PET results are. And they did mention Proton Therapy and immunotherpies as well.
Any experience with Proton Therapy ?
So when will I get tested for the BRAF mutation is that something that happens before the immunotherapy ?
What about NRAS and C-Kits ?
Sorry for so many questions, but these seems to come up over and over again.
VERY helpful post, thank you !
- March 16, 2017 at 2:27 am
They use tissue from the tumor to test for the 3 mutations, so if the biopsy tissue they have is suficient enough they could use that, or if they remove more then they would use tissue from that.
Proton therapy is a form of radiation, I am not familiar with it as I have never had radiation before. When you see an oncologist (hopefully a mel specialist. It's even more important in your case to have a mel specialist as mucosal mel is not as common as cutaneous, so a specialists is even more important) they will go over all the right treatment options for you.
I've heard good things about Georgetown in DC.. most of us drive a bit of a distance to see our mel specialists, so be prepared for that if there isn't one closer to you.
- March 16, 2017 at 2:39 am
Also, I would think you'd not only see a melanoma oncologist but a head and neck oncologist as well, since they specifically deal with cancers of the sinuses and other parts of the head. So, if you're referred to a head and neck oncologist, I would meet with them and then ask them about melanoma specialists. Don't be afraid to ask them "how many cases like mine have you dealt with?". I would never have been someone to ask a question like that before my diagnosis, but it can be really important in choosing the right doctor. We get to choose the care we receive and don't have to settle for the first referral we get. Second and third opinions are pretty normal around here .
- March 16, 2017 at 7:24 pm
Thanks, I have not had my appointment with the oncologist yet. But now have an idea of what questions to ask.
So do you guys go to places based on the specialization ?
I ask since so far, it's only my ENT specialist whose been talking to me, and he said that he'd refer me to the oncologist. Should I be finding the oncologist on my own — in which case, UVAs Center center seems to have some good people for musosal melanoma.
For me, they want ot have the surgery first, assisted by the ENT/Neurosurgeon. I don't have my PET scan yet, they have not done the staging yet. It seems that they want to present it to the Tumor board — and will get back to me. It's the waiting and not having anything definite that's putting me on edge. So your answers are SO appreciated.
- June 18, 2017 at 2:18 am
HI DINA, MY MOM WAS JUST DIAGNOSED LAST WEEK WITH MUCOSAL MELANOMA OF HER SINUSES. SHE HAD SURGERY AND THE MM WAS REMOVED. CLEAR MARGINS. WE ARE GOING TO APPOINTMENTS THIS WEEK TO SEE WHAT FOLLOW UP TREATMENT IS NEEDED. WHAT TREATMENT WAS RECOMMENDED FOR YOU? THANKS SO MUCH AND HOPE YOU ARE DOING WELL. SUMMER
- March 16, 2017 at 2:27 am
- March 16, 2017 at 7:27 pm
Thanks, Becky. I found that as well. It was really amazing story. I feel that I need to educate myself regarding the options available. Statistics look so bleak with 25% after 5 years…is that really so ? I'd like to think about choices that I can make in the quality of life i have, if there is not much time time. I know I should not be saying this, but if the prognosis is bad, then I would chose quality of life over anything. Too much to do 🙂
- March 17, 2017 at 3:47 pm
My son was dx with oral melanoma ( tongue) in 2009…talk about rare! It has spread to one lymph node. Everyone told me not to look at the stats…but of course I did and I agree they are scary. I would read the same scary articles over and over. Try not to do that!
2 surgeries and a year of interferon ( all they did at the time) he is now almost 7 years out wihthout a reoccurance.
Also…the surgeries were done by ENT and then he was turned over to oncologist.
- March 16, 2017 at 1:39 pm
Sorry for the crazy ride I know you are dealing with.
If you look at the posts on this link by 'Bubbles" – that's me: https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/braf-test-results-and-trail
…you will find some basic melanoma info…BRAF info, immunotherapy basics, and a strange little dictonary of terms that I put together. These things are not specific to mucosal melanoma…but melanoma generally. You have gotten some good advice already. I think the first most essential step for you is to seek a melanoma specialist. You will find a great deal of support and information from this board as you go along. Hang in there. I wish you well. Celeste
- March 16, 2017 at 7:31 pm
Thanks Celeste. This is incredibly helpful. Yes, should I be asking my ENT for the referring for the melanoma specialist or should I independently research and find out. I guess both. It's already been SO helpful to get the advice of folks who've been there. It's been hard, and I've not shared with any of my friends and immediate family, just because I know that the "C" word immediately would be death and gloom. I'm not sure if I am ready for that as yet. I really need to focus on some postive energy around me — for the fight. That's why this forum has been so god-sent. Thanks all for your posts and support — That much so means to me.
- March 16, 2017 at 6:22 pm
My mom also has mucosal melanoma, but her primary is anorectal. She was diagnosed at Stage III and has now progressed to Stage IV within a few months. It is incredibly overwhelming and scary. After the PET scan, they should have a good idea of how to proceed next with either surgery or systemic treatment or radiation, etc…
I agree with everyone else and definitely recommend going to a major cancer center. Immunotherapy is the big treatment for all melanomas right now. Push for aggressive treatment and get second opinions if necessary.
I'm also part of this facebook group for mucosal melanoma patients and caregivers. Between this forum, the fb group, and Celeste's blog, I've found it to be a good source of support and information: https://www.facebook.com/groups/906485416088740/
- March 16, 2017 at 7:34 pm
I wish the very best for your mom — did she have surgery and radition ? What about immunotherapy ? how was that for her.
I know what even in a few weeks between my two CT scans the doctors have noticed a difference — so I don't know what that means until I get the CT scan.
Thanks for your advise on a major cancer center. My ENT is nationally ranked, but not with cancer. So I feel I must get a second opinion for mucosal melanoma. This is really useful. I will look at the FB group.
- March 16, 2017 at 9:11 pm
My mom did not have surgery, but started on the ipilumumab/nivolumab combo right away. Unfortunately, after one dose, she had about 6x the normal liver function numbers. Because of that, they would not let her continue on the combo. After that, she did 5 sessions of radiation, which shrunk her mass considerably and stopped a lot of the rectal bleeding. Then she did one dose of Keytruda. Unfortunately for her, the Ketyruda toxicity caused her liver function to rise again (this only happens to about 5% of people on Keytruda…most other people tolerate it pretty well), and so they won't let her continue on that either.
Right now she is doing a chemotherapy, Abraxane. She started this Monday and so far she's been tolerating it pretty well. We are looking into our other options for what to do after that.
Mucosal melanoma is pretty rare, and even the big centers/specialists only see a few of the cases. I was told that MD Anderson, which is one of the big ones for mucosal, only sees about 20 cases/year.
- March 20, 2017 at 9:35 am
i was diagnosed with mucosal melanoma in my nose and later sinus. I had discussions with oncologists in Singapore who were all not melanoma specialists. I put the info on my blog for you to read. Hope there is information you find useful. I studied and learned a lot through q&a with specialists
i underwent cleanup surgery 5 weeks ago and will travel to Japan tomorrow for proton beaming. This is better than normal radiation as it's more accurate with no side effects.
wishing you well as I am in the middle of the struggle find the right treatment.
- November 24, 2017 at 4:22 pm
Here’s kind of a stupid question: can a Radiologist and your Doctor tell the difference (with MRI) between Melanoma, and Cysts? I had an MRI that showed a “maxillary sinus retention cyst”. This was before I developed an aggressive Nodular Melanoma on my right calf.
Just curious. Thanks for the ear.
Hope everyone had a fantastic Thanksgiving!
Tagged: mucosal melanoma
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