mucousal melanoma

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.

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.

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.

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 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?

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?

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.

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.

Becky,

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.

Sam

Sam

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!

Sam

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!

Becky,

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.

Sam

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..

Mary-E

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..

Mary-E

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?  

Thanks!

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?  

Thanks!

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)

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

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 protected].   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. 

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. 

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. 

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. 

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 protected].   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)

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

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.

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)

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)

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.