› Forums › Mucosal Melanoma Community › Malignant Mucosal Melanoma – Anal Canal
- This topic has 18 replies, 6 voices, and was last updated 9 years, 7 months ago by
JerryfromFauq.
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- September 9, 2014 at 6:18 pm
I recently underwent WLE surgery for malignant mucosal melanoma of the anal canal. I had a large tumor (3.8 cm) that had grown into the submucosal tissue by the time it was surgerically removed in the beginning of August. I live in Maryland where my surgery was performed and am in the process of considering adjuvant therapy now — and am at a crossroads. My last PET scan in July showed no metastisas but I know this is an aggressive type of melanoma cancer that can spread quickly. My biopsy surgery pathology clearly identified the cancer as malignant melanoma.
My surgery pathology slides are being examined at Memorial Sloan Kettering. My doctor there is Richard Carvajal – Director of Developmental Therapeutics. When I met with he and his team in July before my surgery (after receiving a diagnosis of malignant melanoma of the anus) and prior to examination of the slides (now underway) he suggested I might be a candidate for a chemotherapy combination therapy consisting of two drugs that have been around for a while – cisplatin (given interveniously) and temador (temazolomide) – given in pill form. The IV and pills are given for a week – followed by a three week lapse. This process is repeated six times. The therapy is based on a clinical study done in China of individuals diagnosed with muscosal melanoma. The outcome of the study suggested that the therapy prolonged the lives, on average, of the individuals who were given the chemo combo.
Just wondering if anyone in the network has undergone the chemo combo at Sloan or any other medical facility — or has any insights into how effective it might be? Also wondering about experiences working with the mucosal melanoma team at Sloan. Any suggestions on how to maximize patient-doctor communications and treatment outcomes.
Finally, I don't know if I am C-Kit or BRAF mutation positive yet — or much about the overall pathology biology. Does anyone have suggestions on what type of immunotherapy might be available to me given specific mutations or other aspects of the malignant mucosal melanoma (anal) that I was diagnosed with (e.g. Gleevec)?
As you can tell I'm a newbie at this and will try and give as good as I get from anyone who can shed any light on my questions. Thanks in advance for any information and interest. I am frightened but hopeful.
Chesapeake Guy!
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- September 9, 2014 at 6:51 pm
I am sorry you are going through this. I suspect Jerry will chime in soon; he is in touch with a large number of mucosal melanoma patients.
I can't answer all of your questions, but would offer this.
–Some kind of therapy makes sense, given the nature of mucosal melanoma.
–The China study is promising, but needs to be replicated. I would certainly give it serious consideration.
–I would want to know my mutation status before making any decisions, particularly c-kit.
Immunotherapy has had mixed results in mucosal melanoma. I don't know that the PD1 data are sufficiently mature to make any comment. Ipi seems to have some impact, but maybe not a huge impact.
Tim–MRF
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- September 9, 2014 at 6:51 pm
I am sorry you are going through this. I suspect Jerry will chime in soon; he is in touch with a large number of mucosal melanoma patients.
I can't answer all of your questions, but would offer this.
–Some kind of therapy makes sense, given the nature of mucosal melanoma.
–The China study is promising, but needs to be replicated. I would certainly give it serious consideration.
–I would want to know my mutation status before making any decisions, particularly c-kit.
Immunotherapy has had mixed results in mucosal melanoma. I don't know that the PD1 data are sufficiently mature to make any comment. Ipi seems to have some impact, but maybe not a huge impact.
Tim–MRF
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- September 9, 2014 at 8:05 pm
I had this treatment after surgery for vaginal mucosal melanoma and local lymph nodes. I started chemo in January 2013 and finished the beginning of June. I had it done locally but it was under the direction of Sloan. My scans last week came back clear. Did it work? I asked that and was told that there really is no way to prove it – it could just be that the cancer did not come back after surgery, but then again maybe it did work. At the time it was offered to me, the doctor told me that just six months prior, he would have had nothing to offer me.
In subsuequent conversations with my doctor at Sloan, I have been told that I would not be offered the chemo again, and if the cancer comes back I would be going the immunotherapy route. So much has changed since my diagnosis.
Some practical advice if I may – be prepared to get a port installed. This stuff is hard on the veins. The treatment is cumulative and each round is harder than the last. The cisplatin gave me neuropathy for which I am getting accupuncture. Chemo sucks, but I viewed (and still view) the treatment as buying me time for the science to get even better. My doctor now tells me that if my cancer comes back, there are many, many things they can try.
Best wishes to you.
Mary
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- September 9, 2014 at 8:05 pm
I had this treatment after surgery for vaginal mucosal melanoma and local lymph nodes. I started chemo in January 2013 and finished the beginning of June. I had it done locally but it was under the direction of Sloan. My scans last week came back clear. Did it work? I asked that and was told that there really is no way to prove it – it could just be that the cancer did not come back after surgery, but then again maybe it did work. At the time it was offered to me, the doctor told me that just six months prior, he would have had nothing to offer me.
In subsuequent conversations with my doctor at Sloan, I have been told that I would not be offered the chemo again, and if the cancer comes back I would be going the immunotherapy route. So much has changed since my diagnosis.
Some practical advice if I may – be prepared to get a port installed. This stuff is hard on the veins. The treatment is cumulative and each round is harder than the last. The cisplatin gave me neuropathy for which I am getting accupuncture. Chemo sucks, but I viewed (and still view) the treatment as buying me time for the science to get even better. My doctor now tells me that if my cancer comes back, there are many, many things they can try.
Best wishes to you.
Mary
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- September 9, 2014 at 8:05 pm
I had this treatment after surgery for vaginal mucosal melanoma and local lymph nodes. I started chemo in January 2013 and finished the beginning of June. I had it done locally but it was under the direction of Sloan. My scans last week came back clear. Did it work? I asked that and was told that there really is no way to prove it – it could just be that the cancer did not come back after surgery, but then again maybe it did work. At the time it was offered to me, the doctor told me that just six months prior, he would have had nothing to offer me.
In subsuequent conversations with my doctor at Sloan, I have been told that I would not be offered the chemo again, and if the cancer comes back I would be going the immunotherapy route. So much has changed since my diagnosis.
Some practical advice if I may – be prepared to get a port installed. This stuff is hard on the veins. The treatment is cumulative and each round is harder than the last. The cisplatin gave me neuropathy for which I am getting accupuncture. Chemo sucks, but I viewed (and still view) the treatment as buying me time for the science to get even better. My doctor now tells me that if my cancer comes back, there are many, many things they can try.
Best wishes to you.
Mary
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- September 9, 2014 at 9:46 pm
My husband, Phil has anal mucosal melanoma and has been in the battle for over 4 1/2 years now. He is Braf and CKit negative, so has no definable mutations to date. Most of the mucosal patients we stay in contact with via email/facebook, etc. are also negative on Braf and Ckit mutations (except for Jerry with is CKit and takes Gleevec). I know it's scary and aggressive, but we have been able to put together a good fight over the years. I would take one exception to Tim's comment, "immunotherapy has had mixed results in mucosal melanoma", I believe it has mixed results in all types of melanoma. There are NO guarantees or valid predictions yet with any melanoma treatment, including the emerging immuno therapies. And, quite frankly, there are too few studies, with too few mucosal patients to have much valid scientific data available.
With that said, I will tell you my husband has done one year of interferon, lung and brain surgery, brain radiation, six rounds of Biochemo (including temodar and cisplatin) and finally TIL. So, Phil has been stable for two years and 4 months after TIL in Houston, and hasn't needed any further treatment in that time. Clearly, his body had an immune response to the T cells, and we hope it continues. If and when, he needs treatment in the future, we would try Ipi or AntiPD1 with the hope we could again recharge his immune system. We don't regret any treatment decision along the way, all laid the groundwork for his current status.
So, you have to research, get opinions from melanoma specialists, be your own advocate, and then finally Go With your Gut. In our experience, Temodar and Cisplatin were our bridge treatments to hold his cancer at bay, while we awaited our TIL spot. Cisplatin is a tough chemo, and in our experience did not provide long term durable response. But, we would do chemo again in a heartbeat, if we needed to get a short term response while waiting for an opportunity at immuno therapy. I guess what I am saying is no one really knows yet, who will respond and who won't, so have multiple plans lined up and fight!! Think ahead and always remember it only takes one treatment to turn the tide! All the best, Valerie (Phil's wife)
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- September 9, 2014 at 9:46 pm
My husband, Phil has anal mucosal melanoma and has been in the battle for over 4 1/2 years now. He is Braf and CKit negative, so has no definable mutations to date. Most of the mucosal patients we stay in contact with via email/facebook, etc. are also negative on Braf and Ckit mutations (except for Jerry with is CKit and takes Gleevec). I know it's scary and aggressive, but we have been able to put together a good fight over the years. I would take one exception to Tim's comment, "immunotherapy has had mixed results in mucosal melanoma", I believe it has mixed results in all types of melanoma. There are NO guarantees or valid predictions yet with any melanoma treatment, including the emerging immuno therapies. And, quite frankly, there are too few studies, with too few mucosal patients to have much valid scientific data available.
With that said, I will tell you my husband has done one year of interferon, lung and brain surgery, brain radiation, six rounds of Biochemo (including temodar and cisplatin) and finally TIL. So, Phil has been stable for two years and 4 months after TIL in Houston, and hasn't needed any further treatment in that time. Clearly, his body had an immune response to the T cells, and we hope it continues. If and when, he needs treatment in the future, we would try Ipi or AntiPD1 with the hope we could again recharge his immune system. We don't regret any treatment decision along the way, all laid the groundwork for his current status.
So, you have to research, get opinions from melanoma specialists, be your own advocate, and then finally Go With your Gut. In our experience, Temodar and Cisplatin were our bridge treatments to hold his cancer at bay, while we awaited our TIL spot. Cisplatin is a tough chemo, and in our experience did not provide long term durable response. But, we would do chemo again in a heartbeat, if we needed to get a short term response while waiting for an opportunity at immuno therapy. I guess what I am saying is no one really knows yet, who will respond and who won't, so have multiple plans lined up and fight!! Think ahead and always remember it only takes one treatment to turn the tide! All the best, Valerie (Phil's wife)
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- September 9, 2014 at 9:46 pm
My husband, Phil has anal mucosal melanoma and has been in the battle for over 4 1/2 years now. He is Braf and CKit negative, so has no definable mutations to date. Most of the mucosal patients we stay in contact with via email/facebook, etc. are also negative on Braf and Ckit mutations (except for Jerry with is CKit and takes Gleevec). I know it's scary and aggressive, but we have been able to put together a good fight over the years. I would take one exception to Tim's comment, "immunotherapy has had mixed results in mucosal melanoma", I believe it has mixed results in all types of melanoma. There are NO guarantees or valid predictions yet with any melanoma treatment, including the emerging immuno therapies. And, quite frankly, there are too few studies, with too few mucosal patients to have much valid scientific data available.
With that said, I will tell you my husband has done one year of interferon, lung and brain surgery, brain radiation, six rounds of Biochemo (including temodar and cisplatin) and finally TIL. So, Phil has been stable for two years and 4 months after TIL in Houston, and hasn't needed any further treatment in that time. Clearly, his body had an immune response to the T cells, and we hope it continues. If and when, he needs treatment in the future, we would try Ipi or AntiPD1 with the hope we could again recharge his immune system. We don't regret any treatment decision along the way, all laid the groundwork for his current status.
So, you have to research, get opinions from melanoma specialists, be your own advocate, and then finally Go With your Gut. In our experience, Temodar and Cisplatin were our bridge treatments to hold his cancer at bay, while we awaited our TIL spot. Cisplatin is a tough chemo, and in our experience did not provide long term durable response. But, we would do chemo again in a heartbeat, if we needed to get a short term response while waiting for an opportunity at immuno therapy. I guess what I am saying is no one really knows yet, who will respond and who won't, so have multiple plans lined up and fight!! Think ahead and always remember it only takes one treatment to turn the tide! All the best, Valerie (Phil's wife)
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- September 10, 2014 at 5:35 pm
Tim – Thanks so much for the quick reply. I see that others have responded too. This is fabulous to get some information and insights so quickly Need to read and digest. I can already tell the people who are on this forum are very generous with their time and want to help! Thanks so much.
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- September 10, 2014 at 5:35 pm
Tim – Thanks so much for the quick reply. I see that others have responded too. This is fabulous to get some information and insights so quickly Need to read and digest. I can already tell the people who are on this forum are very generous with their time and want to help! Thanks so much.
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- September 10, 2014 at 5:35 pm
Tim – Thanks so much for the quick reply. I see that others have responded too. This is fabulous to get some information and insights so quickly Need to read and digest. I can already tell the people who are on this forum are very generous with their time and want to help! Thanks so much.
-
- September 9, 2014 at 6:51 pm
I am sorry you are going through this. I suspect Jerry will chime in soon; he is in touch with a large number of mucosal melanoma patients.
I can't answer all of your questions, but would offer this.
–Some kind of therapy makes sense, given the nature of mucosal melanoma.
–The China study is promising, but needs to be replicated. I would certainly give it serious consideration.
–I would want to know my mutation status before making any decisions, particularly c-kit.
Immunotherapy has had mixed results in mucosal melanoma. I don't know that the PD1 data are sufficiently mature to make any comment. Ipi seems to have some impact, but maybe not a huge impact.
Tim–MRF
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- September 11, 2014 at 9:40 am
As Tim knows some of us are in a closed, Secret FB group that is for mucosal melanoma journeymen (women) only. Currently 32 Ladies and 5 males. I will be glad to invite any mucosal journeymen in if they will send me their email address. (mine is [email protected]) We have people from the age of 18 months up thru at least 72. You can find many of my posts by using the nice MPIP/MRF search function (FB doesn't provide a decent search function). And most of my journey in out profile section on here. I was mis-diagnosed for 3 1/2 years on TEN visits to my Primary General PRACTICIONER . I went to stage IV very quickly after finally being diagnosed with melanoma. IL-2 worked well at holding my innumerble lung tumors stable for 20 months and killing my liver mets. It is known to cure 5-8% of recipents. Towards the end of this time, I learned of ONE Melanoma specialist that had published ONE peer reviewed article on ONE patient (a requirement in the states that have good off-label laws for cancer treatments). I then learned that Wen Jen Hwu at MDA was working on the same line, without having yet published. I got her and my melanoma specialist team talking to each other and inspite of the resumption of extremely rapid growth I had the C-kit Immunohistochemistry (IHC) overexpression test and the c-kit DNA muttion test run. I had the overexpression and at least one of the 5 different c-kit exon mutations possible for c-kit melanomas. Every thing stopped growing within 30 days after starting the Gleevec. That was in March 2009. Still here, still having more greatgrandkids. We have several people that have entered or will shortly enter the Cisplatin/Temazolemide trial. I have actually been on this journey for 12 years since first finding what turned out to be a melanoma "masqrading as a hemorhoid" In Feb 2007 I was given 30-180 days to be gone from this earth. Apperently I have problems telling time!!
As Valarie pointed out, no one can give high predictions as to what effect which treatment will have on which person. In December 2013 NIH issued a report that IL-2 provides a 47% positive response in NRAS melanoma patients. They also found that a high LDH reading reduces the likelihood of success in immunology therapies. While we are getting closer, there is till much to learn. The mucosal numbers are so small that they do not have enough involved in trials to be able to have adaquate statistics to tell us much.
We are still learning about new DNA mutations that were not known in the melanoma world in months past. We just had a member that had been NED for seven years, push her Oncologist to do a PET scan. They found a new melanoma in her groin lymph nodes and it is one of the rare KRAS mutations. Your continuing contact is welcome both here in the MPIP/MRF aand in our FB Group.
Welcome to where we don't want to be. BE vigilant, not paranoid. Learn, fight and LIVE!
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- September 11, 2014 at 9:40 am
As Tim knows some of us are in a closed, Secret FB group that is for mucosal melanoma journeymen (women) only. Currently 32 Ladies and 5 males. I will be glad to invite any mucosal journeymen in if they will send me their email address. (mine is [email protected]) We have people from the age of 18 months up thru at least 72. You can find many of my posts by using the nice MPIP/MRF search function (FB doesn't provide a decent search function). And most of my journey in out profile section on here. I was mis-diagnosed for 3 1/2 years on TEN visits to my Primary General PRACTICIONER . I went to stage IV very quickly after finally being diagnosed with melanoma. IL-2 worked well at holding my innumerble lung tumors stable for 20 months and killing my liver mets. It is known to cure 5-8% of recipents. Towards the end of this time, I learned of ONE Melanoma specialist that had published ONE peer reviewed article on ONE patient (a requirement in the states that have good off-label laws for cancer treatments). I then learned that Wen Jen Hwu at MDA was working on the same line, without having yet published. I got her and my melanoma specialist team talking to each other and inspite of the resumption of extremely rapid growth I had the C-kit Immunohistochemistry (IHC) overexpression test and the c-kit DNA muttion test run. I had the overexpression and at least one of the 5 different c-kit exon mutations possible for c-kit melanomas. Every thing stopped growing within 30 days after starting the Gleevec. That was in March 2009. Still here, still having more greatgrandkids. We have several people that have entered or will shortly enter the Cisplatin/Temazolemide trial. I have actually been on this journey for 12 years since first finding what turned out to be a melanoma "masqrading as a hemorhoid" In Feb 2007 I was given 30-180 days to be gone from this earth. Apperently I have problems telling time!!
As Valarie pointed out, no one can give high predictions as to what effect which treatment will have on which person. In December 2013 NIH issued a report that IL-2 provides a 47% positive response in NRAS melanoma patients. They also found that a high LDH reading reduces the likelihood of success in immunology therapies. While we are getting closer, there is till much to learn. The mucosal numbers are so small that they do not have enough involved in trials to be able to have adaquate statistics to tell us much.
We are still learning about new DNA mutations that were not known in the melanoma world in months past. We just had a member that had been NED for seven years, push her Oncologist to do a PET scan. They found a new melanoma in her groin lymph nodes and it is one of the rare KRAS mutations. Your continuing contact is welcome both here in the MPIP/MRF aand in our FB Group.
Welcome to where we don't want to be. BE vigilant, not paranoid. Learn, fight and LIVE!
-
- September 11, 2014 at 9:40 am
As Tim knows some of us are in a closed, Secret FB group that is for mucosal melanoma journeymen (women) only. Currently 32 Ladies and 5 males. I will be glad to invite any mucosal journeymen in if they will send me their email address. (mine is [email protected]) We have people from the age of 18 months up thru at least 72. You can find many of my posts by using the nice MPIP/MRF search function (FB doesn't provide a decent search function). And most of my journey in out profile section on here. I was mis-diagnosed for 3 1/2 years on TEN visits to my Primary General PRACTICIONER . I went to stage IV very quickly after finally being diagnosed with melanoma. IL-2 worked well at holding my innumerble lung tumors stable for 20 months and killing my liver mets. It is known to cure 5-8% of recipents. Towards the end of this time, I learned of ONE Melanoma specialist that had published ONE peer reviewed article on ONE patient (a requirement in the states that have good off-label laws for cancer treatments). I then learned that Wen Jen Hwu at MDA was working on the same line, without having yet published. I got her and my melanoma specialist team talking to each other and inspite of the resumption of extremely rapid growth I had the C-kit Immunohistochemistry (IHC) overexpression test and the c-kit DNA muttion test run. I had the overexpression and at least one of the 5 different c-kit exon mutations possible for c-kit melanomas. Every thing stopped growing within 30 days after starting the Gleevec. That was in March 2009. Still here, still having more greatgrandkids. We have several people that have entered or will shortly enter the Cisplatin/Temazolemide trial. I have actually been on this journey for 12 years since first finding what turned out to be a melanoma "masqrading as a hemorhoid" In Feb 2007 I was given 30-180 days to be gone from this earth. Apperently I have problems telling time!!
As Valarie pointed out, no one can give high predictions as to what effect which treatment will have on which person. In December 2013 NIH issued a report that IL-2 provides a 47% positive response in NRAS melanoma patients. They also found that a high LDH reading reduces the likelihood of success in immunology therapies. While we are getting closer, there is till much to learn. The mucosal numbers are so small that they do not have enough involved in trials to be able to have adaquate statistics to tell us much.
We are still learning about new DNA mutations that were not known in the melanoma world in months past. We just had a member that had been NED for seven years, push her Oncologist to do a PET scan. They found a new melanoma in her groin lymph nodes and it is one of the rare KRAS mutations. Your continuing contact is welcome both here in the MPIP/MRF aand in our FB Group.
Welcome to where we don't want to be. BE vigilant, not paranoid. Learn, fight and LIVE!
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Tagged: mucosal melanoma
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