hi has anyone else been diagnosed with mucousal melanoma?
We have had a number of people on this board who have had mucosal melanoma, and I know a few outside of this board as well. You may get more responses if you post a specific question. Or, maybe some of the mucosal folks will chime in.
Thank you for replying to my post. I am new at this. I was diagnosed 2 years ago with anal mucosal melanoma. I have mets to the groin and liver. I had 2 weeks of IL-2 treatment . Did not respond. I then had 27 weeks of chemo which held it back but did not shrink any tumors. I recently started a clinical trial XL 184 and have has some shrinkage in tumors. Average 15%. I am happy with this. New scans in 2 weeks. I was wondering how common this type of melanoma is, I had never heard of it before ,and what type of treatment folks are getting for it. I have treatment at the Smilow center in New Haven ,Ct. I feel blessed and Would love to hear some other stories and treatment thoughts.
Our resident expert Jerry also has rectal melanoma..unfortunatley he is recovering from an accident. Hopefully he wil be able to come back to the board soon and he is a wealth of knowledge and has been through many treatments. Have you been tested for C-Kit? I know that it is a more common mutation in mucosal mel. and the drug Gleevic has shown some promise.
I think I have. I did have a blood test to show the mutation.Possibly that was it . I willhave to ask my doctor.
Check with the doctor. My son got tested (he was negative) but it was more than a blood test, they had to test the actual tumor plus look at the slides.
I was diagnosed with Mucosal melanoma in July of 2009. I am currently on Pacitaxol Carboplastin and Avastin.I have my next scan in 5 weeks and hope to hold it back. What Chemo drugs held it back for you? Do you have a postive mutation like braf or did they just let you in the trial for XL 184?
It's agood life if you don't weaken--- borrowed from a friend
My son was dx with mucosal melanoma last year (oral/tongue). There are a few others on the board as well.
Becky I am so sorry to hear that your son had oral. That must be tough. how is he doing?
He is doing well right now. He just finished a year of interferon treatments (yay!!) and feels good. I know that mucosal has a high recurrance rate but we are hoping he beats the odds.
Is your son having problems with dry mouth? I had squamous tonsil cancer 5 years ago. They irradiated away my salivary glands and most of my taste buds. I have a lot of info on dry mouth and dental care if you want it.
He did not get radiation treatments (just the interferon). His head and neck doctor was on the fence about the radiation becuase melanoma tends to be radiation resistant. I know that it is used for other kinds of oral cancers and the side effects (dry mouth etc) were enough to opt out.
The doctor did say that if the melanoma comes back locally, he would want to do that. Hopefully it wont!
I also have a mucosal melanoma, vulvar.
May I ask what treatment you have had and your response? There are so many different treatments and I know they all work differently for different people.Where are you treated?
Hi: My only treatment so far has been surgery, the first time to remove the lesion, then a sentinel node biopsy and finally, in Feb. 2010 the inguinal node disection. I'm a Stage 3a (only one "bad" node). I live in BC and have been treated in Vancouver (about 500 miles west of my small town). I did consult with a Radiation Oncologist in March but he decided not to recommend it "at this time". I have also traveled to see a Melanoma Specialist in Edmonton who has nothing for me now but will test for CKIT if the melanoma should progress and has a Gleevec trial open for the next 18 months. I do not see an Oncologist and do no scans etc. I see a regular gynecologist for screening...this is the just the way things are in rural BC.
I know that mucosal melanoma is quite rare...certainly none of the Doctors my town have ever come across it before.
Do you live in New Haven?
So glad to hear you are having a positive response to your treatment..
Yes Mary I live in New haven I am 10 minutes from the Smilow cancer Center. I was told by my first surgeon that I was only the second case of anal melanoma he had seen in his career,so you are right mucousal is quite rare. I also asked about radiation...not recommended. My best to you I will continue to pray for all cancer patients. Roseann
Hi My husband was diagnosed with anal muscosal melanoma in Jan. 2010, had his surgery in Feb., and did a few weeks of radiation. He then did high dose month of interferon, and is currently doing the at home injections three times a week. So far, he is doing okay with clear PET/CAT/MRI scans in July 2010. He is tolerating the interferon remarkably well. We just hope and pray that it is building his immune system up. We have a local doctor in upstate NY, but our main doctor in at Dana Farber and that is where he gets his scans.
I don't know why they did not offer radiation or interferon to me.Happy to hear he is doing well . Good luck with the treatment. I hear it can be rough. Roseann
Roseann We had two doctors who didn't recommend any treatment, just the wait and see approach. But from the first moment Phil got diagnosed we agreed we would be as aggressive with treatment as we could be. Phil is a young, very healthy man (in his 40s) and we have two small children, so our local doctor said lets try some treatment, (he recommended radiation and interferon), as the research on mucosal melanoma is so limited. We figured that even though there is a very low probablity that interferon will help his case, at least for our mental health we are trying something that may be building his immune system. We also agreed that if the side effects were too severe we would stop, but so far so good. Our main doctor at Dana Farber, said its a personal decision for Phil to make, as he probably wouldn't take interferon if he were in our shoes, but he totally understand and supports us if we feel we need to do something. So, long story short, Phil just completed his fourth month of interferon and is handling it well. Just very tired and skinny!!
We both wish you the best with your treatment. Phil and I pray every night for all the melanoma patients we read about on this bulletin, a world we knew nothing about seven months ago. Take care and if you want to e-mail us personally, since the anal mucosal melanoma group is so small, please feel free. Valerie (Phil's wife) firstname.lastname@example.org
Also, Phil's tumor was sent to Oregon for C-Kit testing and tested negative. But its important to try and get your tumor tested for C-Kit because if you are positive, you have other drug options.
Thank you Valerie. I will ask my doctor next week if I had the C-kit testing. I do remember somthing going to Oregon. I can't remember any more. The first months after my diagnosis are a blurr between surgeries and treatment. i think I must have been in shock. I was told it was probably just a beneign growth and then life changed completely . I agree with you totally doing something is better than doing nothing. Are there any trials at Dana Farber? Have you considered any of the trial drugs? I was terrified to try this but there are not a lot of options for us. My doctor at Yale, Harriet Kluger is conducting this trial. My first scan showed significant shrinkage. I hope it continues.
I too pray for all the cancer patients and hope that the new trial drugs will work for us and the folks to come after us. It is almost 2 years now. With each year I pray for a new drug.
I continue to work and try to maintain some kind of normal in my life. I am only 57 and in good health. I have 3 children and 9 grandchildren. Number ten due any day now. Always a reason to get up and keep fighting. My best to you and your family. Enjoy them and try to stay positive.I will keep you and Phil in my prayers. Roseann
Roseann Phil hasn't been offered any clinical trials yet, I guess because he is NED currently and has been that way since his initial surgery took the tumor and got good margins (whatever that means in the world of anal/rectum mucosal melanoma). Anyway, good luck with your trial drug, sending good, healing thoughts. How did you find out about your liver and groin mets and how long after your initial diagnosis did it take for them to show up?? Valerie
Hi Valerie Happy to hear Phil is NED and I pray that will continue. They found the mets on my scans a few months after the original surgery.I have a CT scan every 6 weeks and both CT and Mri of the brain every 12 weeks. Nothing new since the initial diagnosis. Two years, I feel it is under control right now and the trial is working for me . The side effects are not really bad so I will continue. For life they tell me a pill every day. I have a scan soon and hope they tell me they are still shrinking. Do you know the size of his tumor ? I continue to keep you in my prayers. Roseann
I have mucosal melanoma. I'm stage III and on the ipi trial.
I have not heard of XL 184. Is it possible to get a durable response from it or long-term shrinkage?
There is no standard treatment for us.
Have any of you heard about any promising clinical trials?
I am on a clinical trial at Yale.I don't know anything about the long term results of this medication. I can tell you I had an anal melanoma removed and now have disease in my liver and in my groin. In the 4 months on this trial the tumor in my groin that was the size of a golf ball is now the size of a marble. I felt reduction in 2 weeks on the med. The ones in my liver are also smaller. I had scans 6 weeks ago and they took an average of the three largest tumors and told me I had a 15% reduction in tumor size. I will be scanned again next week. I will tell you the side effects of this med for me are diarrrhea and fatigue. I have lost some weight and don't have much of an appetite. Some folks have had to come off the study due to side effects. I will post scan results next week for you. I think this trial is too new to know any of the long term effects or results. I know there are other studies but are not familiar with them. Where are you being treated? You are right about no standard treatment so it gets very confusing when trying to figure out treatment. It is helpful to hear other stories and treatment results although I do believe that the major cancer centers are all doing the same treatments.My best wishes to you finding one that works for you.
My wife was operated on 4 weeks ago for vaginal mucosal melanoma. The path report indicated that the tumor was 5.5X5X3.5 cm, with clean margins. They are recommending high dose radiation for 6 weeks. I have very little info and would appreciate any direction and information you can give.
My husband was diagnosed with mucosal anal melanoma in Jan. 2010, and had his surgery the first week of Feb. with clean margins. He was offered radiation and interferon, by our local doctor. The two other major cancer centers we went to for second/third opinions, did not recommend either treatment. As you know, there is no standard treatment for melanoma, and especially little to no scientific evidence/data on treating mucosal melanoma due to its low incidence. So, my advice is go to a major cancer center and hear their opinion. Some newer clinical trials are including some Stage lll patients, look into IPI trials.
Personally, we couldn't handle the wait and see approach, so for our mental health we decided to try some form of treatment. My husband ending up doing a few weeks of radiation, which he stopped for another medical reason, and then he went onto interferon, which he is currently taking. Radiation is to attempt local control, while interferon is hopefully for some systematic benefit. Only time will tell, but so far so good. Valerie (Phil's wife)
Hey Sam I don't want to influence your decsion but we all need some facts. So here are my facts as I know them.. I was diagnosed with mucosal melenoma in June 2009 in my rectum. I believe I had the tumor at least six months prior to surgery. I had two surgeries in June and July. The first was to clean margins but did the second just to be sure and was to clean margins. My oncologist at Mayo Clinic Jacksonville recommended interferon and radiation as mucosal melenomas are rare and aggressive. I went to Moffitt Cancer Center in Tampa Florida for a second opinion. They too recommended radiation for five weeks. I opted for the radiation and did not chose to do the interferon. The melenoma to the disbelief of my radiologist grew back through the radiation . I had a small recurring tumor in the same spot. It was removed again to clear margins in January 2010. I was put on cat or ct scans every 3 months. I had a clear scan in March but my June scan showed four spots less than a cm three in my lungs. It was recommended at the moffitt center that I be put in the hospital to under go a bio chemical cocktail four drugs-- interferon interlukin 2 carboplastin and taxol. I went to MD Anderson in Houston and consulted with a specialist at Pittsburg medical center. There was a trial for ipi and temodar at md anderson so I decide to try that experimental drug ipi and temodar(fda approved). Everyone's body reacts differently to drugs and radiation. Unfortunately my tumors grew and I was removed from the trial. I am now on Carboplastin Paxitaxol And Avaston. I will get scanned again in 5 weeks .I hope it will show the tumors at the very least not growing. I would say due to the aggressive nature of this cancer you cannot be passive. There are mutations that if you are positive for that there are drugs that have good track records. The c-kit mutation has a drug called gleevic that has a high success record. Also the BRAF mutation has the new experimental drug.mentioned in the media ..I strongly recommend all my doctors at MD anderson Houston, Moffitt Cancer center Tampa and Mayo Clinic Jacksonville and would suggest you meet with all or some. You can never have enough Doctors as some facilties have access to treatments the others do not. They have all coordinated unselfishly to try and help me. You need to be a patient of them so you can move quickly should tumors ever show up again. As I said decsions are the patients but the doctors will guide you. I have had many melenoma people be kind with their time and experiences. I am trying to pay this forward. I would be glad to dicuss this further by phone if you desire.
I spoke with someone at mayo in Jacksonville yesterday. I went with my wife today to her doctors. They want to do 4 high dosage radiation treatments over 4 weeks. That's all. Her Gyn oncologist has a classmate that was the head gyn oncologist at Anderson, and he concurred. That seems pretty simplistic. The radiation oncologist was very straightforward. This is to help destroy any cells that they might have missed, but won't help if there is systemic problem.
I had stage 4 tonsil cancer 5 years ago, and I learned that the doctors know surprisingly little about how cancers respond in individuals. By that, I mean that everyone responds differently, and they don't seem to be able to anticipate the various outcomes that patients have. I had lots of complications, lost 65 pounds, and was subsitantially weaker for about 18 months. It's all by the protocol. And, as you point out, there isn't a protocol for this.
It sounds like you have become your own advocate, and I applaud you for that. I appreciate your sharing your experience with me. My wife meets with the General Oncologist next week. He is a very close friend, and I would like to share your experience with him to see if he thinks it makes sense for us to look at the drugs you mentioned.
Keep fighting. One of these days we will be attacking tumors at the cellular level. You, and the others on this board, are doing important research to move things forward. i'll let you know how things progress.
Sam Just be aware that the BRAF mutation doesn't happen very often with muscosal melanoma, our doctors decided not to even test my husband for it. Also, the C-Kit mutation has to be tested with slides from the tumor, in our case the slides were sent to Oregon for testing, and six weeks later we found out that my husband, Phil doesn't have this mutation. Of the six muscosal patients we know, none of them have tested positive for C-Kit. As was mentioned before, if your wife has the C-Kit mutation they will offer her the drug, Gleevec. You clearly need a doctor who specializes in melanoma to be the lead medical professional. Early on, one of the major centers set us up with a colon/rectal doctor because that is where my husband's tumor was, but the whole meeting was unproductive, because my husband's cancer is melanoma.
My husband currently is seen at Dana Farber and we love our melanoma team there. It is so important to stay on top of all the treatment options, as it will come down to which way your wife wants to go. If I were in your shoes, this close to the initial surgery, I would explore the clinical trials with IPI. Anyway, just my two cents! If you or your wife want to e-mail us with any questions, please feel free, email@example.com. Muscosal melanoma is so rare and such a challenge, we like to support each other. Good luck with your decision making and the best to your wife. Valerie (Phil's wife)
Thanks to all of you. We are seeing the oncologist tomorrow and are fully armed with questions. I'll let you know what he says.
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