Anal Melanoma Recently Diagnosed – Looking for Advice

HI..

 

So sorry to that you are having to endure this..

Please give Fred Eichorn a call.. he is amazing.. and my gut feeling is that you can take care of this with Cellect..

(631) 584-3100  

 

HI..

 

So sorry to that you are having to endure this..

Please give Fred Eichorn a call.. he is amazing.. and my gut feeling is that you can take care of this with Cellect..

(631) 584-3100  

 

HI..

 

So sorry to that you are having to endure this..

Please give Fred Eichorn a call.. he is amazing.. and my gut feeling is that you can take care of this with Cellect..

(631) 584-3100  

 

Hi Rick,

Sorry to hear you have to become a member of this board but there are a lot of people on this board with a lot of experience in different medications as well as things to help with side effects.

I no nothing about Anal Melanoma but my recommendation is to see a melanoma specialist as far a a surgeon and a oncologist is concerned.  They know more about which treatments that work the best for melanoma.  Dana Farber please see a melanoma specialist and if they have and anal melanoma it would be even better.

Chemotherapy is a very controversial point here with some leaning each way but before I would do that I would check out what your other options might be for treatments whether clinical trials if needed.  It is good to hear that the ultrasound was negative.

I am sure the children will have a hard time coming to grips with any of this information since the lose of their mother as well was not that long ago.  Prayers for you and the family.

Judy (loving wife of Gene Stage IV and now NED ((no evidence of disease)).)

Hi Rick,

Sorry to hear you have to become a member of this board but there are a lot of people on this board with a lot of experience in different medications as well as things to help with side effects.

I no nothing about Anal Melanoma but my recommendation is to see a melanoma specialist as far a a surgeon and a oncologist is concerned.  They know more about which treatments that work the best for melanoma.  Dana Farber please see a melanoma specialist and if they have and anal melanoma it would be even better.

Chemotherapy is a very controversial point here with some leaning each way but before I would do that I would check out what your other options might be for treatments whether clinical trials if needed.  It is good to hear that the ultrasound was negative.

I am sure the children will have a hard time coming to grips with any of this information since the lose of their mother as well was not that long ago.  Prayers for you and the family.

Judy (loving wife of Gene Stage IV and now NED ((no evidence of disease)).)

Hi Rick,

Sorry to hear you have to become a member of this board but there are a lot of people on this board with a lot of experience in different medications as well as things to help with side effects.

I no nothing about Anal Melanoma but my recommendation is to see a melanoma specialist as far a a surgeon and a oncologist is concerned.  They know more about which treatments that work the best for melanoma.  Dana Farber please see a melanoma specialist and if they have and anal melanoma it would be even better.

Chemotherapy is a very controversial point here with some leaning each way but before I would do that I would check out what your other options might be for treatments whether clinical trials if needed.  It is good to hear that the ultrasound was negative.

I am sure the children will have a hard time coming to grips with any of this information since the lose of their mother as well was not that long ago.  Prayers for you and the family.

Judy (loving wife of Gene Stage IV and now NED ((no evidence of disease)).)

I'm so sorry, Rick.  This is a tough diagnosis, but it sounds like you are doing everything perfectly.  I would stick with your Dana Farber plan. Melanoma does not respond to usual treatments for cancer so you absolutely must find a center that has melanoma specialists  – Dana Farber is one of those listed as a Melanoma Center of Excellence by the MIF (Melanoma International Foundation) http://www.melanomainternational.org/resources/cancercenters2.html.  Just make sure you are dealing with a Melanoma specialist.  

Also make sure you are comfortable with your onc and that he/she is willing to try anything for you.  Best case is that the surgery got it all – have you been staged yet?  

There are people on the board who are much more knowlegeable than I am and I'm sure they'll post.  

Good luck, please keep us posted.  

Fen

Oh, and this is what Sloan-Kettering says about Cellect:

Cellect has not been studied in clinical trials and there is no evidence that it can be used to prevent or treat any diseases in humans. We do not support using this product as a cancer treatment.

http://www.mskcc.org/cancer-care/herb/cellect

I'm so sorry, Rick.  This is a tough diagnosis, but it sounds like you are doing everything perfectly.  I would stick with your Dana Farber plan. Melanoma does not respond to usual treatments for cancer so you absolutely must find a center that has melanoma specialists  – Dana Farber is one of those listed as a Melanoma Center of Excellence by the MIF (Melanoma International Foundation) http://www.melanomainternational.org/resources/cancercenters2.html.  Just make sure you are dealing with a Melanoma specialist.  

Also make sure you are comfortable with your onc and that he/she is willing to try anything for you.  Best case is that the surgery got it all – have you been staged yet?  

There are people on the board who are much more knowlegeable than I am and I'm sure they'll post.  

Good luck, please keep us posted.  

Fen

Oh, and this is what Sloan-Kettering says about Cellect:

Cellect has not been studied in clinical trials and there is no evidence that it can be used to prevent or treat any diseases in humans. We do not support using this product as a cancer treatment.

http://www.mskcc.org/cancer-care/herb/cellect

I'm so sorry, Rick.  This is a tough diagnosis, but it sounds like you are doing everything perfectly.  I would stick with your Dana Farber plan. Melanoma does not respond to usual treatments for cancer so you absolutely must find a center that has melanoma specialists  – Dana Farber is one of those listed as a Melanoma Center of Excellence by the MIF (Melanoma International Foundation) http://www.melanomainternational.org/resources/cancercenters2.html.  Just make sure you are dealing with a Melanoma specialist.  

Also make sure you are comfortable with your onc and that he/she is willing to try anything for you.  Best case is that the surgery got it all – have you been staged yet?  

There are people on the board who are much more knowlegeable than I am and I'm sure they'll post.  

Good luck, please keep us posted.  

Fen

Oh, and this is what Sloan-Kettering says about Cellect:

Cellect has not been studied in clinical trials and there is no evidence that it can be used to prevent or treat any diseases in humans. We do not support using this product as a cancer treatment.

http://www.mskcc.org/cancer-care/herb/cellect

Look for posts on this site from JerryFromFauq.  He has also had anal melanoma.  I'm sure he will chime in here later, too.  You should ask for a C-Kit test as anal melanoma is considered mucosal melanoma.  Mucosal melanoma with the C-Kit mutation may respond to Gleevec.  I'm sure Jerry can expand, more.  I know nothing about the "margins" required for anal melanoma and since your PET is negative elsewhere, the surgical margins are probably the first step.

I would definitely seek other opinions from large melanoma centers.  This melanoma is rarer than cutaneous (skin) melanoma and you'll need the opinions from those larger institutions who may see this more than small centers.

Again, look up Jerry's profile.  He's very good at helping anyone and I'm sure he can also give you some good advice.

Best wishes,

Janner

Look for posts on this site from JerryFromFauq.  He has also had anal melanoma.  I'm sure he will chime in here later, too.  You should ask for a C-Kit test as anal melanoma is considered mucosal melanoma.  Mucosal melanoma with the C-Kit mutation may respond to Gleevec.  I'm sure Jerry can expand, more.  I know nothing about the "margins" required for anal melanoma and since your PET is negative elsewhere, the surgical margins are probably the first step.

I would definitely seek other opinions from large melanoma centers.  This melanoma is rarer than cutaneous (skin) melanoma and you'll need the opinions from those larger institutions who may see this more than small centers.

Again, look up Jerry's profile.  He's very good at helping anyone and I'm sure he can also give you some good advice.

Best wishes,

Janner

Look for posts on this site from JerryFromFauq.  He has also had anal melanoma.  I'm sure he will chime in here later, too.  You should ask for a C-Kit test as anal melanoma is considered mucosal melanoma.  Mucosal melanoma with the C-Kit mutation may respond to Gleevec.  I'm sure Jerry can expand, more.  I know nothing about the "margins" required for anal melanoma and since your PET is negative elsewhere, the surgical margins are probably the first step.

I would definitely seek other opinions from large melanoma centers.  This melanoma is rarer than cutaneous (skin) melanoma and you'll need the opinions from those larger institutions who may see this more than small centers.

Again, look up Jerry's profile.  He's very good at helping anyone and I'm sure he can also give you some good advice.

Best wishes,

Janner

Hi Rick,

Sorrry to hear of your diagnosis. There is a Patient Story on the MRF web site about someone who was diagnosed with anal melanoma and went to Dana Farber. Just go to the Home page, then look under Community and click Patient Stories. Find the story for a gal named Jeannine. You may want to give it a read.

You're doing the right thing by seeking out a melanoma specialist and based on Jeannine's story, Dana Farber appears to be a good place to go.

Hi Rick,

Sorrry to hear of your diagnosis. There is a Patient Story on the MRF web site about someone who was diagnosed with anal melanoma and went to Dana Farber. Just go to the Home page, then look under Community and click Patient Stories. Find the story for a gal named Jeannine. You may want to give it a read.

You're doing the right thing by seeking out a melanoma specialist and based on Jeannine's story, Dana Farber appears to be a good place to go.

Hi Rick,

Sorrry to hear of your diagnosis. There is a Patient Story on the MRF web site about someone who was diagnosed with anal melanoma and went to Dana Farber. Just go to the Home page, then look under Community and click Patient Stories. Find the story for a gal named Jeannine. You may want to give it a read.

You're doing the right thing by seeking out a melanoma specialist and based on Jeannine's story, Dana Farber appears to be a good place to go.

Rick, My husband, Phil has anal melanoma and goes to Dana Farber/ Dr Hodi as our primary doctor. However, my husband has fought hard and been to MDAnderson too. Lots of decisions to make in the beginning, especially in regard to extent of surgery. My best advice is to calm down as best you can, stop reading the Internet statistics, and devise a plan. New and better treatments are being offered for melanoma patients everyday. There is hope, you just need to advocate for yourself and FIGHT! This is a rare form of melanoma especially among men, most of its very small numbers are middle age (50s and 60s year old) women. My husband and I are also raising young children, so looks like we have alot in common. Please feel free to email us directly, [email protected] with any questions and please keep us posted. God bless, Valerie (Phil’s wife)

Rick, My husband, Phil has anal melanoma and goes to Dana Farber/ Dr Hodi as our primary doctor. However, my husband has fought hard and been to MDAnderson too. Lots of decisions to make in the beginning, especially in regard to extent of surgery. My best advice is to calm down as best you can, stop reading the Internet statistics, and devise a plan. New and better treatments are being offered for melanoma patients everyday. There is hope, you just need to advocate for yourself and FIGHT! This is a rare form of melanoma especially among men, most of its very small numbers are middle age (50s and 60s year old) women. My husband and I are also raising young children, so looks like we have alot in common. Please feel free to email us directly, [email protected] with any questions and please keep us posted. God bless, Valerie (Phil’s wife)

Rick, My husband, Phil has anal melanoma and goes to Dana Farber/ Dr Hodi as our primary doctor. However, my husband has fought hard and been to MDAnderson too. Lots of decisions to make in the beginning, especially in regard to extent of surgery. My best advice is to calm down as best you can, stop reading the Internet statistics, and devise a plan. New and better treatments are being offered for melanoma patients everyday. There is hope, you just need to advocate for yourself and FIGHT! This is a rare form of melanoma especially among men, most of its very small numbers are middle age (50s and 60s year old) women. My husband and I are also raising young children, so looks like we have alot in common. Please feel free to email us directly, [email protected] with any questions and please keep us posted. God bless, Valerie (Phil’s wife)

I'm sure you have read all the negative scary writings on the internet abut the problems with having Anal Melanoma. They were even worse six and seven years ago when I was given a life expectancy of less than 6 months.

One of my main problems was that I was referred to a local surgeon that knew little about Melanoma and follow up after it was identified. I believe you should see a Melanoma Oncology Specialist immediately. There is too much going on in the melanoma arena for even a Melanoma specialist to read it all, much less a general surgeon or general Oncologist.

 

I would expect that they would want to identify the Sentinel Lymph Node that the primary tumor area drains into before they do a WLE (Wide Local Excision) or Ostomy.

I did not have the Ostomy, I have a friend that lives nearby that did. She had good doctors at Johns Hopkins from the start. She has had more follow up problems with more metastasis than I have had.

You will learn that melanoma does not exactly follow any definite rule between individuals. It is really probably a hundred different cancers going by the oncoproteins, DNA mutations, signaling paths, and resulting treatments that can have an effect on an individuals melanoma.

Get copies of all your reports and scans – Bloodwork, radiology, pathology, surgical, etc.

See if any of the reports say mucosal. Only one of my many reports used the word mucosal. That word may be the reason I am still here.

Since my diagnosis, the treatments I have requested (besides surgeries) have been Immunotherapy (IL-2) and a targeted chemo treatment that is just being in trials for c-kit melanomas.

There have been very few treatments or trials available for less than Stage IV Melanoma (not Clarks Level 4).

If melanoma cells are found in the lymph nodes one is Stage III. If spread to distant locations or to organs one is stage IV.

You should have the C-kit oncoprotein histochemical test run on your removed tumor tissue. This test can be conducted by most local laboratories in a day or two at a cost of about $150. If this test is positive then tumor tissue should be provided to a more specialized DNA mutation testing Lab to determine which of the possible C-kit DNA mutations the tumor might have.

There are at least 4 Targeted c-kit chemo drugs approved or under testing for GIST, some Luekemias and some Lymphomas. The approved ones can be used for other cancers under many states off label laws. I have been on Gleevec since March 2009. The IL-2 Immunotherapy worked for twenty months before it ceased to be effective for me.

The most effective immunotherapies approved against across the board melanomas are IL-2 and Yervoy (Ippi). Both can be harsh, but may also be effective.

If one does not have the c-kit then BRAF oncoproteins and DNA mutations should be tested for. Much work is going on in this area as well.

Among the more hopeful trials at present are the BRAF/MEk trials and the PD-1 trials.

 

Many here have lived to see kids graduate, get married and provide us with grandkids (Great grandkids as well in my case.) Learn and fight.

There are many treatments that work for a small number of patients. Researchers are working to figure out why what works on the ones it does work on. The genome project is helping do wonders.

You aare also welcome to call and email me if you like.

I'm sure you have read all the negative scary writings on the internet abut the problems with having Anal Melanoma. They were even worse six and seven years ago when I was given a life expectancy of less than 6 months.

One of my main problems was that I was referred to a local surgeon that knew little about Melanoma and follow up after it was identified. I believe you should see a Melanoma Oncology Specialist immediately. There is too much going on in the melanoma arena for even a Melanoma specialist to read it all, much less a general surgeon or general Oncologist.

 

I would expect that they would want to identify the Sentinel Lymph Node that the primary tumor area drains into before they do a WLE (Wide Local Excision) or Ostomy.

I did not have the Ostomy, I have a friend that lives nearby that did. She had good doctors at Johns Hopkins from the start. She has had more follow up problems with more metastasis than I have had.

You will learn that melanoma does not exactly follow any definite rule between individuals. It is really probably a hundred different cancers going by the oncoproteins, DNA mutations, signaling paths, and resulting treatments that can have an effect on an individuals melanoma.

Get copies of all your reports and scans – Bloodwork, radiology, pathology, surgical, etc.

See if any of the reports say mucosal. Only one of my many reports used the word mucosal. That word may be the reason I am still here.

Since my diagnosis, the treatments I have requested (besides surgeries) have been Immunotherapy (IL-2) and a targeted chemo treatment that is just being in trials for c-kit melanomas.

There have been very few treatments or trials available for less than Stage IV Melanoma (not Clarks Level 4).

If melanoma cells are found in the lymph nodes one is Stage III. If spread to distant locations or to organs one is stage IV.

You should have the C-kit oncoprotein histochemical test run on your removed tumor tissue. This test can be conducted by most local laboratories in a day or two at a cost of about $150. If this test is positive then tumor tissue should be provided to a more specialized DNA mutation testing Lab to determine which of the possible C-kit DNA mutations the tumor might have.

There are at least 4 Targeted c-kit chemo drugs approved or under testing for GIST, some Luekemias and some Lymphomas. The approved ones can be used for other cancers under many states off label laws. I have been on Gleevec since March 2009. The IL-2 Immunotherapy worked for twenty months before it ceased to be effective for me.

The most effective immunotherapies approved against across the board melanomas are IL-2 and Yervoy (Ippi). Both can be harsh, but may also be effective.

If one does not have the c-kit then BRAF oncoproteins and DNA mutations should be tested for. Much work is going on in this area as well.

Among the more hopeful trials at present are the BRAF/MEk trials and the PD-1 trials.

 

Many here have lived to see kids graduate, get married and provide us with grandkids (Great grandkids as well in my case.) Learn and fight.

There are many treatments that work for a small number of patients. Researchers are working to figure out why what works on the ones it does work on. The genome project is helping do wonders.

You aare also welcome to call and email me if you like.

I'm sure you have read all the negative scary writings on the internet abut the problems with having Anal Melanoma. They were even worse six and seven years ago when I was given a life expectancy of less than 6 months.

One of my main problems was that I was referred to a local surgeon that knew little about Melanoma and follow up after it was identified. I believe you should see a Melanoma Oncology Specialist immediately. There is too much going on in the melanoma arena for even a Melanoma specialist to read it all, much less a general surgeon or general Oncologist.

 

I would expect that they would want to identify the Sentinel Lymph Node that the primary tumor area drains into before they do a WLE (Wide Local Excision) or Ostomy.

I did not have the Ostomy, I have a friend that lives nearby that did. She had good doctors at Johns Hopkins from the start. She has had more follow up problems with more metastasis than I have had.

You will learn that melanoma does not exactly follow any definite rule between individuals. It is really probably a hundred different cancers going by the oncoproteins, DNA mutations, signaling paths, and resulting treatments that can have an effect on an individuals melanoma.

Get copies of all your reports and scans – Bloodwork, radiology, pathology, surgical, etc.

See if any of the reports say mucosal. Only one of my many reports used the word mucosal. That word may be the reason I am still here.

Since my diagnosis, the treatments I have requested (besides surgeries) have been Immunotherapy (IL-2) and a targeted chemo treatment that is just being in trials for c-kit melanomas.

There have been very few treatments or trials available for less than Stage IV Melanoma (not Clarks Level 4).

If melanoma cells are found in the lymph nodes one is Stage III. If spread to distant locations or to organs one is stage IV.

You should have the C-kit oncoprotein histochemical test run on your removed tumor tissue. This test can be conducted by most local laboratories in a day or two at a cost of about $150. If this test is positive then tumor tissue should be provided to a more specialized DNA mutation testing Lab to determine which of the possible C-kit DNA mutations the tumor might have.

There are at least 4 Targeted c-kit chemo drugs approved or under testing for GIST, some Luekemias and some Lymphomas. The approved ones can be used for other cancers under many states off label laws. I have been on Gleevec since March 2009. The IL-2 Immunotherapy worked for twenty months before it ceased to be effective for me.

The most effective immunotherapies approved against across the board melanomas are IL-2 and Yervoy (Ippi). Both can be harsh, but may also be effective.

If one does not have the c-kit then BRAF oncoproteins and DNA mutations should be tested for. Much work is going on in this area as well.

Among the more hopeful trials at present are the BRAF/MEk trials and the PD-1 trials.

 

Many here have lived to see kids graduate, get married and provide us with grandkids (Great grandkids as well in my case.) Learn and fight.

There are many treatments that work for a small number of patients. Researchers are working to figure out why what works on the ones it does work on. The genome project is helping do wonders.

You aare also welcome to call and email me if you like.

Hi Rick,

I am so sorry that you are faced with this diagnosis. Valerie and Jerry are the most experienced with this diagnosis. I am happy to say that it's been two years since my diagnosis and I am still NED.

The best advice that I ever got was to go to the place that has the most experience with my type of cancer no matter where that is. I was very fortunate to go to Dana Farber. My Oncologist is Dr. Hodi, Surgical Oncologist is Dr. Russell and Dermatologist is Dr. Werchniack. I too had looked on line for any information possible. You have to observe that most of the information is at least 6 years old. There are new developments every DAY. This is not a death sentance. There are more and more people joining our group.  The one thing that kept me sane is a binder that kept my diagnosis, picture of my lesion, records of all my scans and a place for my questions, bios of all my doctors and any research that I found about anal melanoma. I am still on the 3-4 month check-up plan.  The biggest challenge that I still have is with my insurance company. Fight and demand the treatment that is best for you.  It takes more effort but is so worth it.  If you do decide to go out of your local hospital please make sure you get  copies of all your scans and reports.  The records don't travel to and from my local doctors to Dana Farber too well and it has saved a lot of anxiety having a copy for the Doctors at each appointment.  Please let us know how you are doing and feel free to contact me directly if you have any questions or just need to talk  – Jeannine

 [email protected] Ppppppp     PPP Pl  P  Pll Please feel free to contact me directly if you would like to talk. My e-mail is [email protected]. Plea Please feel free to contact me directly if you would like to talk. My e-mail is [email protected].  Please feel free to contact me directly if you would like to talk. My e-mail is [email protected].   Please feel free to contact me directly if you would like to talk. My e-mail is [email protected].   Please feel free to contact me directly if you would like to talk. My e-mail is [email protected].  One   I  I 

Hi Rick,

I am so sorry that you are faced with this diagnosis. Valerie and Jerry are the most experienced with this diagnosis. I am happy to say that it's been two years since my diagnosis and I am still NED.

The best advice that I ever got was to go to the place that has the most experience with my type of cancer no matter where that is. I was very fortunate to go to Dana Farber. My Oncologist is Dr. Hodi, Surgical Oncologist is Dr. Russell and Dermatologist is Dr. Werchniack. I too had looked on line for any information possible. You have to observe that most of the information is at least 6 years old. There are new developments every DAY. This is not a death sentance. There are more and more people joining our group.  The one thing that kept me sane is a binder that kept my diagnosis, picture of my lesion, records of all my scans and a place for my questions, bios of all my doctors and any research that I found about anal melanoma. I am still on the 3-4 month check-up plan.  The biggest challenge that I still have is with my insurance company. Fight and demand the treatment that is best for you.  It takes more effort but is so worth it.  If you do decide to go out of your local hospital please make sure you get  copies of all your scans and reports.  The records don't travel to and from my local doctors to Dana Farber too well and it has saved a lot of anxiety having a copy for the Doctors at each appointment.  Please let us know how you are doing and feel free to contact me directly if you have any questions or just need to talk  – Jeannine

 [email protected] Ppppppp     PPP Pl  P  Pll Please feel free to contact me directly if you would like to talk. My e-mail is [email protected]. Plea Please feel free to contact me directly if you would like to talk. My e-mail is [email protected].  Please feel free to contact me directly if you would like to talk. My e-mail is [email protected].   Please feel free to contact me directly if you would like to talk. My e-mail is [email protected].   Please feel free to contact me directly if you would like to talk. My e-mail is [email protected].  One   I  I 

Hi Rick,

I am so sorry that you are faced with this diagnosis. Valerie and Jerry are the most experienced with this diagnosis. I am happy to say that it's been two years since my diagnosis and I am still NED.

The best advice that I ever got was to go to the place that has the most experience with my type of cancer no matter where that is. I was very fortunate to go to Dana Farber. My Oncologist is Dr. Hodi, Surgical Oncologist is Dr. Russell and Dermatologist is Dr. Werchniack. I too had looked on line for any information possible. You have to observe that most of the information is at least 6 years old. There are new developments every DAY. This is not a death sentance. There are more and more people joining our group.  The one thing that kept me sane is a binder that kept my diagnosis, picture of my lesion, records of all my scans and a place for my questions, bios of all my doctors and any research that I found about anal melanoma. I am still on the 3-4 month check-up plan.  The biggest challenge that I still have is with my insurance company. Fight and demand the treatment that is best for you.  It takes more effort but is so worth it.  If you do decide to go out of your local hospital please make sure you get  copies of all your scans and reports.  The records don't travel to and from my local doctors to Dana Farber too well and it has saved a lot of anxiety having a copy for the Doctors at each appointment.  Please let us know how you are doing and feel free to contact me directly if you have any questions or just need to talk  – Jeannine

 [email protected] Ppppppp     PPP Pl  P  Pll Please feel free to contact me directly if you would like to talk. My e-mail is [email protected]. Plea Please feel free to contact me directly if you would like to talk. My e-mail is [email protected].  Please feel free to contact me directly if you would like to talk. My e-mail is [email protected].   Please feel free to contact me directly if you would like to talk. My e-mail is [email protected].   Please feel free to contact me directly if you would like to talk. My e-mail is [email protected].  One   I  I