mucosal

Sorry for the late response to this, I'm just now seeing it for some reason. How are you doing? My business partner was also diagnosed with rectal mucosal melanoma late last year, had a full APR and is now in a clinical trial.  

How is your partner? I just was diagnosed with mucosal anorectal melanoma.   Having a hard time finding anyone that has had positive results.  I'm 42 and not ready to give up!  

How is your partner? I just was diagnosed with mucosal anorectal melanoma.   Having a hard time finding anyone that has had positive results.  I'm 42 and not ready to give up!  

How is your partner? I just was diagnosed with mucosal anorectal melanoma.   Having a hard time finding anyone that has had positive results.  I'm 42 and not ready to give up!  

Sorry for the late response to this, I'm just now seeing it for some reason. How are you doing? My business partner was also diagnosed with rectal mucosal melanoma late last year, had a full APR and is now in a clinical trial.  

Sorry for the late response to this, I'm just now seeing it for some reason. How are you doing? My business partner was also diagnosed with rectal mucosal melanoma late last year, had a full APR and is now in a clinical trial.  

Will gladly be praying for both Joy and you and the little ones.  Hope for at  least stability.  I have not researched to learn if Dastinib is considered to be cytostatic or an apoptosis treatment.  There is differing opinons as to whether or not Gleevec is a cytostatic for c-kit or if it might induce apoptosis for c-kit melanoma cells.  If it  is a cytostatic one might need tostay on the treatment for life.  Studies of Gleevec have shown that if stopped at the 3 or five year points that the tumor load gowth rate takes  off again on the cancer tumors that the FDA has approved it for.

Jerry,

So happy to hear that you continue to do well.  That is wonderful news, Jerry.

Jackie

Jerry,

So happy to hear that you continue to do well.  That is wonderful news, Jerry.

Jackie

Jerry,

So happy to hear that you continue to do well.  That is wonderful news, Jerry.

Jackie

Will gladly be praying for both Joy and you and the little ones.  Hope for at  least stability.  I have not researched to learn if Dastinib is considered to be cytostatic or an apoptosis treatment.  There is differing opinons as to whether or not Gleevec is a cytostatic for c-kit or if it might induce apoptosis for c-kit melanoma cells.  If it  is a cytostatic one might need tostay on the treatment for life.  Studies of Gleevec have shown that if stopped at the 3 or five year points that the tumor load gowth rate takes  off again on the cancer tumors that the FDA has approved it for.

Will gladly be praying for both Joy and you and the little ones.  Hope for at  least stability.  I have not researched to learn if Dastinib is considered to be cytostatic or an apoptosis treatment.  There is differing opinons as to whether or not Gleevec is a cytostatic for c-kit or if it might induce apoptosis for c-kit melanoma cells.  If it  is a cytostatic one might need tostay on the treatment for life.  Studies of Gleevec have shown that if stopped at the 3 or five year points that the tumor load gowth rate takes  off again on the cancer tumors that the FDA has approved it for.

I just stumbled upon this post.  My husband was diagnosed with mucosal melanoma of the nasal cavity in April of this year.  He had surgery twice and one lymph node was involved.  He has had no other treatments because they were trying to figure out what was up with a lung nodule and it's been found to be a second primary cancer which surgery would cure.  The plan was to have part of the lung removed, then do radiation and possibly a year of interferon.  It's all out the window now because he woke up last Sunday with a chain of lumps in the neck area where the lymph nodes had been removed.  The biopsy result is back and it's inoperable melanoma that has spread.  He will have another pet scan and see the melanoma specialist as soon as possible.  Now they are talking some type of chemo but the referring doctor has no idea what the melanoma specialist has in mind.  The doctor told me repeatedly that the delay in radiation has nothing to do with the spread.  This was my biggest fear – that it would spread waiting for treament to begin.  We have had a never ending round of doctor visits, tests, scans and biopsies since it all began, with each appointment adding to the dealy.

I'm curious.  When did they say your mother had 6 months to a year to live?  Was it at the intial time of diagnosis or further along?  I'd like to hear form survivors of this as well.  Hope we get some.

Also, what treatments has your mother had?  How did she handle them?

Generally the 2-6 months life expectancy for stage 4 melanoma was from the date of diagnosis as a stage IV patient.

   That is what the general oncologist gave me in March 2007 when I was found to have entered stage IV of mucosal melanoma.  I got out of his practice and jumped into a Melanoma specialist at UVA with over 20 years expererence using IL-2.  (The only thing that stood much over a 1% chance of helping me fight my mucosal melanoma back in 2007.)  After a partial response to the IL-2 (20 months of being essentially stable), I went on Gleevec for my C-kit onco-protein mucosal melanoma. 

    Still here, still fighting melanoma, still not NED, still living a fairly good life (now with 15 living grandchildren, and the younger ones want to know why I call # 16 a GREAT grandchild!). "Great" to be able to explain that wording to a 6 year old, that I was not supposed to live to see!

   Get your husband tested for the c-kit oncoprotein and if positive, tested to see if he also has one of the c-kit DNA mutations in his tumors.  If c-kit positive there are at least 4 different targeted drugs being tested off label, (FDA approved for other c-kit cancers.)

Jerry, I'm encouraged that you tolerated the IL-2. I'm not sure yet if I'm eligible for any of the newer drugs for stage !V mucosal melanoma.  Do you credit this in part to the expertise of your oncologist?  I heard the side effects are very severe and I would need to be hospitalized to administer this, possibly even in the ICU since I have low blood pressure issues. I've been treated for 9 years by a general oncologist with a lot of experience with melanoma at Northwestern Hospital in Chicago.  My question is should I consider a melanoma center perhaps at the U of Chicago?  Although I am comfortable with my team, I'm afraid they may not be as up to date as someone dealing exclusively with melanoma.  any thoughts?  So glad to know your thriving so many years after stage !V, very encouraging, Madeline

I definitely credit the experience and expertise and attention of Dr Weis with mine and DebbieVa's withstanding the IL-2 experience.  It is a rough experience and it is absolutely required that it be administered in an expert hospital setting. A ward with specially trained nurses  (Sometimes administered in an ICU) that will know what response to provide for each symptom experienced and will do so with extreme speed. The main reason that I L-2 has not been admoinistered muich m ore widely is lake of IL-2 traind Oncologists and their resulting fear of recommending what they do not know enough about.  The maximum target is to adm inister one bag of Interluekon every 8 hours 5 days and does i ndeed require a hospital setting to monitor and treat side-effects.  My Medical Melanoma Specialist Oncologist has worked with IL-2 since the early 1980's (IL-2 was only FDA approved in late 1990's)  He helped gain the approval.  He is personally involved with the administration of each bag in spite of being the head of the Medical Oncology Dept and a Deputy Director of the University Medical center.

   The lack of hospital beds in Canada for melanoma is one reason that IL-2 is not used in Canada.  The low blood pressure that the administration of IL-2 generates may be a problem for you and will certainly have to be closely monitored.  They will withhold bags of IL-2 if your upper blood pressure drops below 90.  I and a few others learned that black licorice (tea, etc which tastes awful) helps hold ones BP up.

    The blood pressure issue could be a factor in determining whether to go the Ipi or IL-2 path first.  Both can be be very toxic on people.  Some people find one to be worse than the other.  I have a friend that had a much worse side effects on Ipi than I had on IL-2.  Varies with each person.  At least the recovery time from eaach weeks ILK-2 treatment is shosrt.

I definitely credit the experience and expertise and attention of Dr Weis with mine and DebbieVa's withstanding the IL-2 experience.  It is a rough experience and it is absolutely required that it be administered in an expert hospital setting. A ward with specially trained nurses  (Sometimes administered in an ICU) that will know what response to provide for each symptom experienced and will do so with extreme speed. The main reason that I L-2 has not been admoinistered muich m ore widely is lake of IL-2 traind Oncologists and their resulting fear of recommending what they do not know enough about.  The maximum target is to adm inister one bag of Interluekon every 8 hours 5 days and does i ndeed require a hospital setting to monitor and treat side-effects.  My Medical Melanoma Specialist Oncologist has worked with IL-2 since the early 1980's (IL-2 was only FDA approved in late 1990's)  He helped gain the approval.  He is personally involved with the administration of each bag in spite of being the head of the Medical Oncology Dept and a Deputy Director of the University Medical center.

   The lack of hospital beds in Canada for melanoma is one reason that IL-2 is not used in Canada.  The low blood pressure that the administration of IL-2 generates may be a problem for you and will certainly have to be closely monitored.  They will withhold bags of IL-2 if your upper blood pressure drops below 90.  I and a few others learned that black licorice (tea, etc which tastes awful) helps hold ones BP up.

    The blood pressure issue could be a factor in determining whether to go the Ipi or IL-2 path first.  Both can be be very toxic on people.  Some people find one to be worse than the other.  I have a friend that had a much worse side effects on Ipi than I had on IL-2.  Varies with each person.  At least the recovery time from eaach weeks ILK-2 treatment is shosrt.

I definitely credit the experience and expertise and attention of Dr Weis with mine and DebbieVa's withstanding the IL-2 experience.  It is a rough experience and it is absolutely required that it be administered in an expert hospital setting. A ward with specially trained nurses  (Sometimes administered in an ICU) that will know what response to provide for each symptom experienced and will do so with extreme speed. The main reason that I L-2 has not been admoinistered muich m ore widely is lake of IL-2 traind Oncologists and their resulting fear of recommending what they do not know enough about.  The maximum target is to adm inister one bag of Interluekon every 8 hours 5 days and does i ndeed require a hospital setting to monitor and treat side-effects.  My Medical Melanoma Specialist Oncologist has worked with IL-2 since the early 1980's (IL-2 was only FDA approved in late 1990's)  He helped gain the approval.  He is personally involved with the administration of each bag in spite of being the head of the Medical Oncology Dept and a Deputy Director of the University Medical center.

   The lack of hospital beds in Canada for melanoma is one reason that IL-2 is not used in Canada.  The low blood pressure that the administration of IL-2 generates may be a problem for you and will certainly have to be closely monitored.  They will withhold bags of IL-2 if your upper blood pressure drops below 90.  I and a few others learned that black licorice (tea, etc which tastes awful) helps hold ones BP up.

    The blood pressure issue could be a factor in determining whether to go the Ipi or IL-2 path first.  Both can be be very toxic on people.  Some people find one to be worse than the other.  I have a friend that had a much worse side effects on Ipi than I had on IL-2.  Varies with each person.  At least the recovery time from eaach weeks ILK-2 treatment is shosrt.

Jerry, I'm encouraged that you tolerated the IL-2. I'm not sure yet if I'm eligible for any of the newer drugs for stage !V mucosal melanoma.  Do you credit this in part to the expertise of your oncologist?  I heard the side effects are very severe and I would need to be hospitalized to administer this, possibly even in the ICU since I have low blood pressure issues. I've been treated for 9 years by a general oncologist with a lot of experience with melanoma at Northwestern Hospital in Chicago.  My question is should I consider a melanoma center perhaps at the U of Chicago?  Although I am comfortable with my team, I'm afraid they may not be as up to date as someone dealing exclusively with melanoma.  any thoughts?  So glad to know your thriving so many years after stage !V, very encouraging, Madeline

Jerry, I'm encouraged that you tolerated the IL-2. I'm not sure yet if I'm eligible for any of the newer drugs for stage !V mucosal melanoma.  Do you credit this in part to the expertise of your oncologist?  I heard the side effects are very severe and I would need to be hospitalized to administer this, possibly even in the ICU since I have low blood pressure issues. I've been treated for 9 years by a general oncologist with a lot of experience with melanoma at Northwestern Hospital in Chicago.  My question is should I consider a melanoma center perhaps at the U of Chicago?  Although I am comfortable with my team, I'm afraid they may not be as up to date as someone dealing exclusively with melanoma.  any thoughts?  So glad to know your thriving so many years after stage !V, very encouraging, Madeline

Generally the 2-6 months life expectancy for stage 4 melanoma was from the date of diagnosis as a stage IV patient.

   That is what the general oncologist gave me in March 2007 when I was found to have entered stage IV of mucosal melanoma.  I got out of his practice and jumped into a Melanoma specialist at UVA with over 20 years expererence using IL-2.  (The only thing that stood much over a 1% chance of helping me fight my mucosal melanoma back in 2007.)  After a partial response to the IL-2 (20 months of being essentially stable), I went on Gleevec for my C-kit onco-protein mucosal melanoma. 

    Still here, still fighting melanoma, still not NED, still living a fairly good life (now with 15 living grandchildren, and the younger ones want to know why I call # 16 a GREAT grandchild!). "Great" to be able to explain that wording to a 6 year old, that I was not supposed to live to see!

   Get your husband tested for the c-kit oncoprotein and if positive, tested to see if he also has one of the c-kit DNA mutations in his tumors.  If c-kit positive there are at least 4 different targeted drugs being tested off label, (FDA approved for other c-kit cancers.)

Generally the 2-6 months life expectancy for stage 4 melanoma was from the date of diagnosis as a stage IV patient.

   That is what the general oncologist gave me in March 2007 when I was found to have entered stage IV of mucosal melanoma.  I got out of his practice and jumped into a Melanoma specialist at UVA with over 20 years expererence using IL-2.  (The only thing that stood much over a 1% chance of helping me fight my mucosal melanoma back in 2007.)  After a partial response to the IL-2 (20 months of being essentially stable), I went on Gleevec for my C-kit onco-protein mucosal melanoma. 

    Still here, still fighting melanoma, still not NED, still living a fairly good life (now with 15 living grandchildren, and the younger ones want to know why I call # 16 a GREAT grandchild!). "Great" to be able to explain that wording to a 6 year old, that I was not supposed to live to see!

   Get your husband tested for the c-kit oncoprotein and if positive, tested to see if he also has one of the c-kit DNA mutations in his tumors.  If c-kit positive there are at least 4 different targeted drugs being tested off label, (FDA approved for other c-kit cancers.)

I just stumbled upon this post.  My husband was diagnosed with mucosal melanoma of the nasal cavity in April of this year.  He had surgery twice and one lymph node was involved.  He has had no other treatments because they were trying to figure out what was up with a lung nodule and it's been found to be a second primary cancer which surgery would cure.  The plan was to have part of the lung removed, then do radiation and possibly a year of interferon.  It's all out the window now because he woke up last Sunday with a chain of lumps in the neck area where the lymph nodes had been removed.  The biopsy result is back and it's inoperable melanoma that has spread.  He will have another pet scan and see the melanoma specialist as soon as possible.  Now they are talking some type of chemo but the referring doctor has no idea what the melanoma specialist has in mind.  The doctor told me repeatedly that the delay in radiation has nothing to do with the spread.  This was my biggest fear – that it would spread waiting for treament to begin.  We have had a never ending round of doctor visits, tests, scans and biopsies since it all began, with each appointment adding to the dealy.

I'm curious.  When did they say your mother had 6 months to a year to live?  Was it at the intial time of diagnosis or further along?  I'd like to hear form survivors of this as well.  Hope we get some.

Also, what treatments has your mother had?  How did she handle them?

I just stumbled upon this post.  My husband was diagnosed with mucosal melanoma of the nasal cavity in April of this year.  He had surgery twice and one lymph node was involved.  He has had no other treatments because they were trying to figure out what was up with a lung nodule and it's been found to be a second primary cancer which surgery would cure.  The plan was to have part of the lung removed, then do radiation and possibly a year of interferon.  It's all out the window now because he woke up last Sunday with a chain of lumps in the neck area where the lymph nodes had been removed.  The biopsy result is back and it's inoperable melanoma that has spread.  He will have another pet scan and see the melanoma specialist as soon as possible.  Now they are talking some type of chemo but the referring doctor has no idea what the melanoma specialist has in mind.  The doctor told me repeatedly that the delay in radiation has nothing to do with the spread.  This was my biggest fear – that it would spread waiting for treament to begin.  We have had a never ending round of doctor visits, tests, scans and biopsies since it all began, with each appointment adding to the dealy.

I'm curious.  When did they say your mother had 6 months to a year to live?  Was it at the intial time of diagnosis or further along?  I'd like to hear form survivors of this as well.  Hope we get some.

Also, what treatments has your mother had?  How did she handle them?

This is the first time I ever heard of a patient that is BOTH C-Kit and B-RAF positive.  That is great for your mom.  I'm still waiting on test results to determine if I have either mutation.  My oncologist at Northwestern Memorial in Chicago told me it is unusual to find these mutations in mucosal melanoma of the nasal cavity.  I wish your mom well on this journey.  Please keep me/us posted on how she is doing.

This is the first time I ever heard of a patient that is BOTH C-Kit and B-RAF positive.  That is great for your mom.  I'm still waiting on test results to determine if I have either mutation.  My oncologist at Northwestern Memorial in Chicago told me it is unusual to find these mutations in mucosal melanoma of the nasal cavity.  I wish your mom well on this journey.  Please keep me/us posted on how she is doing.

This is the first time I ever heard of a patient that is BOTH C-Kit and B-RAF positive.  That is great for your mom.  I'm still waiting on test results to determine if I have either mutation.  My oncologist at Northwestern Memorial in Chicago told me it is unusual to find these mutations in mucosal melanoma of the nasal cavity.  I wish your mom well on this journey.  Please keep me/us posted on how she is doing.

Would love to see that oncopro tein/DNA mutation lab report. Everythin I have been abe to find ANYWHERE says that no melanoma tumor has ever been found with both c-kit mutations and BRAF mutations.  Any chance that they say they found "wild type" BRAF WHICH IS NORMAL IN THE BODY?

What does wild-type allele mean? – Wild type (or wildtype abbreviated wt) refers to the phenotype of the typical form of a species as it occurs in nature. Originally, the wild type was conceptualized as a product of the standard, "normal" allele at a locus, in contrast to that produced by a non-standard, "mutant" allele. It is now appreciated that most or all gene loci exist in a variety of allelic forms, which vary in frequency throughout the geographic range of a species, and that a uniform wild type does not exist. In general, however, the most prevalent allele[clarification needed] – e.g., the one with the highest gene frequency – is the one deemed as wild type.[1]  http://en.wikipedia.org/wiki/Wild_type

http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0018257           shows c-kit and BRAF mutations to be in seperate sinaling lines for mutation.

http://www.ncbi.nlm.nih.gov/pubmed/17372901

Are the continuous removals metastises, are or they new primaries?  People with multiply primaries statistcally have a higher survival rate!

Are the continuous removals metastises, are or they new primaries?  People with multiply primaries statistcally have a higher survival rate!

Would love to see that oncopro tein/DNA mutation lab report. Everythin I have been abe to find ANYWHERE says that no melanoma tumor has ever been found with both c-kit mutations and BRAF mutations.  Any chance that they say they found "wild type" BRAF WHICH IS NORMAL IN THE BODY?

What does wild-type allele mean? – Wild type (or wildtype abbreviated wt) refers to the phenotype of the typical form of a species as it occurs in nature. Originally, the wild type was conceptualized as a product of the standard, "normal" allele at a locus, in contrast to that produced by a non-standard, "mutant" allele. It is now appreciated that most or all gene loci exist in a variety of allelic forms, which vary in frequency throughout the geographic range of a species, and that a uniform wild type does not exist. In general, however, the most prevalent allele[clarification needed] – e.g., the one with the highest gene frequency – is the one deemed as wild type.[1]  http://en.wikipedia.org/wiki/Wild_type

http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0018257           shows c-kit and BRAF mutations to be in seperate sinaling lines for mutation.

http://www.ncbi.nlm.nih.gov/pubmed/17372901

Would love to see that oncopro tein/DNA mutation lab report. Everythin I have been abe to find ANYWHERE says that no melanoma tumor has ever been found with both c-kit mutations and BRAF mutations.  Any chance that they say they found "wild type" BRAF WHICH IS NORMAL IN THE BODY?

What does wild-type allele mean? – Wild type (or wildtype abbreviated wt) refers to the phenotype of the typical form of a species as it occurs in nature. Originally, the wild type was conceptualized as a product of the standard, "normal" allele at a locus, in contrast to that produced by a non-standard, "mutant" allele. It is now appreciated that most or all gene loci exist in a variety of allelic forms, which vary in frequency throughout the geographic range of a species, and that a uniform wild type does not exist. In general, however, the most prevalent allele[clarification needed] – e.g., the one with the highest gene frequency – is the one deemed as wild type.[1]  http://en.wikipedia.org/wiki/Wild_type

http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0018257           shows c-kit and BRAF mutations to be in seperate sinaling lines for mutation.

http://www.ncbi.nlm.nih.gov/pubmed/17372901

Hello everyone, I am new to this site.  I really appreciate the stories and comments, this is such a shock adn its comforting to connect.  My husband was diagnosed with stage 4 mucosal melanoma (mets in numerous parts of his bones) in November 2012.  His tumor is negative for braf and ckit.   He is considering Interleukin or Yervoy although not sure either are worth the pain and suffering.   If the treatment takes 6 months and extends your life for 6 months, but you were in the hospital most of the time  – not clear he wants to do that.   His primary oncologist is recommending intensive Interleukin in Riverside CA.  Another melanoma specialist we consulted recommends Yervoy in SF.   My husband would rather get treatment close to home and continue to work, be close to family and friends.  I'd appreciate any experiences re these treatments options, and any data (I know its scarce) on effectiveness of the treatments, especially considering the time in the hospital as non-good time.  Thanks

I understand and agree with your husband's concern about the quality of life issues. As you say, what good is an extra 6 months of life if you spend most of it miserable and/or hospitalized? However, the side effects of cancer treatments are so variable that there is no way of predicting what will happen to your husband. Some people are devestated by the side effects of Zelboraf, for example, while my brother has had no problem with it. I have heard similar stories about Yervoy– some people are miserable and some not bothered too much. 

I suggest that your husband go ahead with treatment and if he finds the side effects untenable, he can always stop the treatment. I don't understand why he would have to travel to SF to get Yervoy; it's FDA approved so it can be administered by any doctor. Of course, you would want an experienced oncologist to do it, but do you have to go all the way to SF to find an experienced oncologist? Maybe you do.   

Thank you for your comments, I really appreciate it. 

We live in the Bay Area and have Kaiser coverage.  Kaiser wants to treat him in Riverside, which would be difficult in terms of maintaining jobs (we are both in our 50s and working), family and friend connections.  He would prefer to be treated in SF area so he can work and play with friends when he feels well enough. If one of the treatments was clearly superior he might go for that, but otherwise being close to home is far better.  He has an apt with his Kaiser oncologist tomorrow and we'll discuss.  Sounds like we should ask Kaiser for Yervoy here. 

If Kaiser does not offer Yervoy,  anyone have experience whether Kaiser will acept quality of life from being close to home as a factor in selecting treatment and maybe approving out-of-system costs? (Yervoy is ~ $150,000 from my understanding).

He is very concerned about the mental effects from chemo that he has heard about.  I'd appreciate any thoughts on extent of side effects of Yervoy vs IL2.

Thanks so much – you are helping me clarify his options.

I don't know if you have a health insurance open season (some are closing in a day or two?) and different insurer choices, but I switched away from Kaiser at the end of 2010 primarily because the melanoma specialist for Kaiser (Dr. Gailaini) is in Riverside and I wanted a melanoma specialist (and treatments) locally (SF area for me too).

Dr. Gailani and his staff were great. And it does work better if you're the one talking directly to the melanoma-specializing oncologist (Dr. Gailani at Riverside.) so you can ask questions and have a real dialog. I did 4 cycles of IL-2 (Kaiser paid for my travel to/from Riverside for each of the 4 trips). Then I had my first neurosurgery at Kaiser's neurosurgery center in Redwood City. And my first radiation at Kaiser's new Cyberknife facility in South SF (all in 2010). Then in health insurance open season at the end of 2010 I switched insurers so I could get treated locally now (all those treatments are available in SF).

One thing to consider is that 400 miles (distance from here to Riverside) may not be that much further than the closest cancer center for folks in some parts of the country. 

Good luck tomorrow and with your choices.

We met with Kaiser and they agreed to Ipi treatment close to home, Oakland, so that is good.  I think he will start after we return from a long planned big family vacation in a few weeks, assuming he decides to go forward with it.  I was encouraged by teh perspective that he can start it and if its too devastating he can quit. 

We have heard about a trial with higher doses of Ipi and GM-CSF.  Anyone know about any responses/reactions to that combo?  Thanks all.  I will post this is another stream that also addresses mucosal melanoma, not sure best approach with these diverging talks.   Thanks again, I really appreciate hearing from others.

I believe Gene_S here is on the IPI + GM-CSF trial. 

Congrats on getting the treatment for your husband that you wanted, close to home to boot. Keep us posted how it goes with IPI at Kaiser Oakland. 

Dr. Daud at UCSF gave me my first IPI cycle and read me the riot act about letting him know IMMEDIATELY if any symptoms of any kind came up, most especially diarrhea. He did that because the quicker the intervention can be if there are severe immune reactions, the more likely it can be controlled quickly.  

– Kyle

I believe Gene_S here is on the IPI + GM-CSF trial. 

Congrats on getting the treatment for your husband that you wanted, close to home to boot. Keep us posted how it goes with IPI at Kaiser Oakland. 

Dr. Daud at UCSF gave me my first IPI cycle and read me the riot act about letting him know IMMEDIATELY if any symptoms of any kind came up, most especially diarrhea. He did that because the quicker the intervention can be if there are severe immune reactions, the more likely it can be controlled quickly.  

– Kyle

I believe Gene_S here is on the IPI + GM-CSF trial. 

Congrats on getting the treatment for your husband that you wanted, close to home to boot. Keep us posted how it goes with IPI at Kaiser Oakland. 

Dr. Daud at UCSF gave me my first IPI cycle and read me the riot act about letting him know IMMEDIATELY if any symptoms of any kind came up, most especially diarrhea. He did that because the quicker the intervention can be if there are severe immune reactions, the more likely it can be controlled quickly.  

– Kyle

We met with Kaiser and they agreed to Ipi treatment close to home, Oakland, so that is good.  I think he will start after we return from a long planned big family vacation in a few weeks, assuming he decides to go forward with it.  I was encouraged by teh perspective that he can start it and if its too devastating he can quit. 

We have heard about a trial with higher doses of Ipi and GM-CSF.  Anyone know about any responses/reactions to that combo?  Thanks all.  I will post this is another stream that also addresses mucosal melanoma, not sure best approach with these diverging talks.   Thanks again, I really appreciate hearing from others.

We met with Kaiser and they agreed to Ipi treatment close to home, Oakland, so that is good.  I think he will start after we return from a long planned big family vacation in a few weeks, assuming he decides to go forward with it.  I was encouraged by teh perspective that he can start it and if its too devastating he can quit. 

We have heard about a trial with higher doses of Ipi and GM-CSF.  Anyone know about any responses/reactions to that combo?  Thanks all.  I will post this is another stream that also addresses mucosal melanoma, not sure best approach with these diverging talks.   Thanks again, I really appreciate hearing from others.

I don't know if you have a health insurance open season (some are closing in a day or two?) and different insurer choices, but I switched away from Kaiser at the end of 2010 primarily because the melanoma specialist for Kaiser (Dr. Gailaini) is in Riverside and I wanted a melanoma specialist (and treatments) locally (SF area for me too).

Dr. Gailani and his staff were great. And it does work better if you're the one talking directly to the melanoma-specializing oncologist (Dr. Gailani at Riverside.) so you can ask questions and have a real dialog. I did 4 cycles of IL-2 (Kaiser paid for my travel to/from Riverside for each of the 4 trips). Then I had my first neurosurgery at Kaiser's neurosurgery center in Redwood City. And my first radiation at Kaiser's new Cyberknife facility in South SF (all in 2010). Then in health insurance open season at the end of 2010 I switched insurers so I could get treated locally now (all those treatments are available in SF).

One thing to consider is that 400 miles (distance from here to Riverside) may not be that much further than the closest cancer center for folks in some parts of the country. 

Good luck tomorrow and with your choices.

I don't know if you have a health insurance open season (some are closing in a day or two?) and different insurer choices, but I switched away from Kaiser at the end of 2010 primarily because the melanoma specialist for Kaiser (Dr. Gailaini) is in Riverside and I wanted a melanoma specialist (and treatments) locally (SF area for me too).

Dr. Gailani and his staff were great. And it does work better if you're the one talking directly to the melanoma-specializing oncologist (Dr. Gailani at Riverside.) so you can ask questions and have a real dialog. I did 4 cycles of IL-2 (Kaiser paid for my travel to/from Riverside for each of the 4 trips). Then I had my first neurosurgery at Kaiser's neurosurgery center in Redwood City. And my first radiation at Kaiser's new Cyberknife facility in South SF (all in 2010). Then in health insurance open season at the end of 2010 I switched insurers so I could get treated locally now (all those treatments are available in SF).

One thing to consider is that 400 miles (distance from here to Riverside) may not be that much further than the closest cancer center for folks in some parts of the country. 

Good luck tomorrow and with your choices.

Thank you for your comments, I really appreciate it. 

We live in the Bay Area and have Kaiser coverage.  Kaiser wants to treat him in Riverside, which would be difficult in terms of maintaining jobs (we are both in our 50s and working), family and friend connections.  He would prefer to be treated in SF area so he can work and play with friends when he feels well enough. If one of the treatments was clearly superior he might go for that, but otherwise being close to home is far better.  He has an apt with his Kaiser oncologist tomorrow and we'll discuss.  Sounds like we should ask Kaiser for Yervoy here. 

If Kaiser does not offer Yervoy,  anyone have experience whether Kaiser will acept quality of life from being close to home as a factor in selecting treatment and maybe approving out-of-system costs? (Yervoy is ~ $150,000 from my understanding).

He is very concerned about the mental effects from chemo that he has heard about.  I'd appreciate any thoughts on extent of side effects of Yervoy vs IL2.

Thanks so much – you are helping me clarify his options.

Thank you for your comments, I really appreciate it. 

We live in the Bay Area and have Kaiser coverage.  Kaiser wants to treat him in Riverside, which would be difficult in terms of maintaining jobs (we are both in our 50s and working), family and friend connections.  He would prefer to be treated in SF area so he can work and play with friends when he feels well enough. If one of the treatments was clearly superior he might go for that, but otherwise being close to home is far better.  He has an apt with his Kaiser oncologist tomorrow and we'll discuss.  Sounds like we should ask Kaiser for Yervoy here. 

If Kaiser does not offer Yervoy,  anyone have experience whether Kaiser will acept quality of life from being close to home as a factor in selecting treatment and maybe approving out-of-system costs? (Yervoy is ~ $150,000 from my understanding).

He is very concerned about the mental effects from chemo that he has heard about.  I'd appreciate any thoughts on extent of side effects of Yervoy vs IL2.

Thanks so much – you are helping me clarify his options.

I understand and agree with your husband's concern about the quality of life issues. As you say, what good is an extra 6 months of life if you spend most of it miserable and/or hospitalized? However, the side effects of cancer treatments are so variable that there is no way of predicting what will happen to your husband. Some people are devestated by the side effects of Zelboraf, for example, while my brother has had no problem with it. I have heard similar stories about Yervoy– some people are miserable and some not bothered too much. 

I suggest that your husband go ahead with treatment and if he finds the side effects untenable, he can always stop the treatment. I don't understand why he would have to travel to SF to get Yervoy; it's FDA approved so it can be administered by any doctor. Of course, you would want an experienced oncologist to do it, but do you have to go all the way to SF to find an experienced oncologist? Maybe you do.   

I understand and agree with your husband's concern about the quality of life issues. As you say, what good is an extra 6 months of life if you spend most of it miserable and/or hospitalized? However, the side effects of cancer treatments are so variable that there is no way of predicting what will happen to your husband. Some people are devestated by the side effects of Zelboraf, for example, while my brother has had no problem with it. I have heard similar stories about Yervoy– some people are miserable and some not bothered too much. 

I suggest that your husband go ahead with treatment and if he finds the side effects untenable, he can always stop the treatment. I don't understand why he would have to travel to SF to get Yervoy; it's FDA approved so it can be administered by any doctor. Of course, you would want an experienced oncologist to do it, but do you have to go all the way to SF to find an experienced oncologist? Maybe you do.   

Hi,

My husband Scott has mucosal, stage IV, diagnosed in August of this year.  He is undergoing his second round of interleuken as we speak.  Luckily he is getting the procedure done 20 minutes from our home.

The first round was not nearly as bad as we had thought.  It's not easy, and it's not a guarantee by any means.  We felt it was certainly worth a shot since it has the best long term success.  I wouldn't rule Interleuken out if your husband is in good health and can handle it.  The side effects are not long lasting, just during the treatment for 5 days and then about 4 days afterwards. 

Best of Luck, Lisa

Hi,

My husband Scott has mucosal, stage IV, diagnosed in August of this year.  He is undergoing his second round of interleuken as we speak.  Luckily he is getting the procedure done 20 minutes from our home.

The first round was not nearly as bad as we had thought.  It's not easy, and it's not a guarantee by any means.  We felt it was certainly worth a shot since it has the best long term success.  I wouldn't rule Interleuken out if your husband is in good health and can handle it.  The side effects are not long lasting, just during the treatment for 5 days and then about 4 days afterwards. 

Best of Luck, Lisa

Hi,

My husband Scott has mucosal, stage IV, diagnosed in August of this year.  He is undergoing his second round of interleuken as we speak.  Luckily he is getting the procedure done 20 minutes from our home.

The first round was not nearly as bad as we had thought.  It's not easy, and it's not a guarantee by any means.  We felt it was certainly worth a shot since it has the best long term success.  I wouldn't rule Interleuken out if your husband is in good health and can handle it.  The side effects are not long lasting, just during the treatment for 5 days and then about 4 days afterwards. 

Best of Luck, Lisa

Hello everyone, I am new to this site.  I really appreciate the stories and comments, this is such a shock adn its comforting to connect.  My husband was diagnosed with stage 4 mucosal melanoma (mets in numerous parts of his bones) in November 2012.  His tumor is negative for braf and ckit.   He is considering Interleukin or Yervoy although not sure either are worth the pain and suffering.   If the treatment takes 6 months and extends your life for 6 months, but you were in the hospital most of the time  – not clear he wants to do that.   His primary oncologist is recommending intensive Interleukin in Riverside CA.  Another melanoma specialist we consulted recommends Yervoy in SF.   My husband would rather get treatment close to home and continue to work, be close to family and friends.  I'd appreciate any experiences re these treatments options, and any data (I know its scarce) on effectiveness of the treatments, especially considering the time in the hospital as non-good time.  Thanks

Hello everyone, I am new to this site.  I really appreciate the stories and comments, this is such a shock adn its comforting to connect.  My husband was diagnosed with stage 4 mucosal melanoma (mets in numerous parts of his bones) in November 2012.  His tumor is negative for braf and ckit.   He is considering Interleukin or Yervoy although not sure either are worth the pain and suffering.   If the treatment takes 6 months and extends your life for 6 months, but you were in the hospital most of the time  – not clear he wants to do that.   His primary oncologist is recommending intensive Interleukin in Riverside CA.  Another melanoma specialist we consulted recommends Yervoy in SF.   My husband would rather get treatment close to home and continue to work, be close to family and friends.  I'd appreciate any experiences re these treatments options, and any data (I know its scarce) on effectiveness of the treatments, especially considering the time in the hospital as non-good time.  Thanks

So far, everything has been new primaries.  I'm just concerned because my husband is now having rectal bleeding.  He does have a history of hemorroids but had surgery several years ago an he has not had any problems since.  He is having no pain, but the bleeding is heavier than it ever was.  I wish I knew if the surgeon had sent a sample to pathology after that surgery…

You know, I really hate this "seeing melanoma behind every bush" thing.  Trying to balance my understanding of this disease and the treatments with not letting every sniffle become cancer is difficult.

So far, everything has been new primaries.  I'm just concerned because my husband is now having rectal bleeding.  He does have a history of hemorroids but had surgery several years ago an he has not had any problems since.  He is having no pain, but the bleeding is heavier than it ever was.  I wish I knew if the surgeon had sent a sample to pathology after that surgery…

You know, I really hate this "seeing melanoma behind every bush" thing.  Trying to balance my understanding of this disease and the treatments with not letting every sniffle become cancer is difficult.

Hi – There are a few of us here with mucosal, but it might be best to start a new thread, if you haven't already, since the forum does not automatically move these to the top when someone posts in them unless you view with that option.  What type of mucosal do you have?

Hi – There are a few of us here with mucosal, but it might be best to start a new thread, if you haven't already, since the forum does not automatically move these to the top when someone posts in them unless you view with that option.  What type of mucosal do you have?

Hi – There are a few of us here with mucosal, but it might be best to start a new thread, if you haven't already, since the forum does not automatically move these to the top when someone posts in them unless you view with that option.  What type of mucosal do you have?