Input needed regarding treatment options – stage IV

Charlie said: "The absolute worst choice is to take the easy way just because it is easy."

Aw, Charlie, you're being a bit harsh here, aren't you? I don't think that anyone here expects melanoma treatments to be a walk in the park. And I don't think I have ever seen anyone say, "I want the easiest treatment for melanoma regardless of effectiveness." Truthfully, I think that if there was a melanoma treatment with a guaranteed 100% cure rate but it came with one year of guaranteed misery, everybody would jump on it. 

The truth of the matter is that at this time there is NO guaranteed cure. Most treatments that "work" only work in 5%-15% of patients; the best work in 30-40%. Nobody knows which patients will be responders and which ones won't, and the treatments usually delay disease progression for a few months.

I know that some patients have the attitude that they are going to BEAT MELANOMA no matter what. They will do everything and suffer anything to try for a cure. That is a perfectly acceptable philosophy and bully for them. But it is also quite reasonable (at least for those with widely disseminated disease) to assume that you are going to die of melanoma one of these days. In that case, it's a good idea is to balance quality of life versus extending life. Many people justifyably balk at spending their final months too nauseous, feverish, aching, and fatigued to have any fun in order to gain an extra month or two of life. What they are looking for is a treatment that has a reasonable chance of success but that allows them to have a decent quality of life, too. They are looking for a balance. That is a perfectly acceptable philosophy, too. 

Charlie said: "The absolute worst choice is to take the easy way just because it is easy."

Aw, Charlie, you're being a bit harsh here, aren't you? I don't think that anyone here expects melanoma treatments to be a walk in the park. And I don't think I have ever seen anyone say, "I want the easiest treatment for melanoma regardless of effectiveness." Truthfully, I think that if there was a melanoma treatment with a guaranteed 100% cure rate but it came with one year of guaranteed misery, everybody would jump on it. 

The truth of the matter is that at this time there is NO guaranteed cure. Most treatments that "work" only work in 5%-15% of patients; the best work in 30-40%. Nobody knows which patients will be responders and which ones won't, and the treatments usually delay disease progression for a few months.

I know that some patients have the attitude that they are going to BEAT MELANOMA no matter what. They will do everything and suffer anything to try for a cure. That is a perfectly acceptable philosophy and bully for them. But it is also quite reasonable (at least for those with widely disseminated disease) to assume that you are going to die of melanoma one of these days. In that case, it's a good idea is to balance quality of life versus extending life. Many people justifyably balk at spending their final months too nauseous, feverish, aching, and fatigued to have any fun in order to gain an extra month or two of life. What they are looking for is a treatment that has a reasonable chance of success but that allows them to have a decent quality of life, too. They are looking for a balance. That is a perfectly acceptable philosophy, too. 

Charlie said: "The absolute worst choice is to take the easy way just because it is easy."

Aw, Charlie, you're being a bit harsh here, aren't you? I don't think that anyone here expects melanoma treatments to be a walk in the park. And I don't think I have ever seen anyone say, "I want the easiest treatment for melanoma regardless of effectiveness." Truthfully, I think that if there was a melanoma treatment with a guaranteed 100% cure rate but it came with one year of guaranteed misery, everybody would jump on it. 

The truth of the matter is that at this time there is NO guaranteed cure. Most treatments that "work" only work in 5%-15% of patients; the best work in 30-40%. Nobody knows which patients will be responders and which ones won't, and the treatments usually delay disease progression for a few months.

I know that some patients have the attitude that they are going to BEAT MELANOMA no matter what. They will do everything and suffer anything to try for a cure. That is a perfectly acceptable philosophy and bully for them. But it is also quite reasonable (at least for those with widely disseminated disease) to assume that you are going to die of melanoma one of these days. In that case, it's a good idea is to balance quality of life versus extending life. Many people justifyably balk at spending their final months too nauseous, feverish, aching, and fatigued to have any fun in order to gain an extra month or two of life. What they are looking for is a treatment that has a reasonable chance of success but that allows them to have a decent quality of life, too. They are looking for a balance. That is a perfectly acceptable philosophy, too. 

Hey Charlie,
I agree with all that you say.
I think that in this particular the poster was deterred by IL-2’s nasty side-effects, perhaps not realizing that they are treated as they occur and quickly resolve as soon as the treatment ends.
Personally, I would go through all my treatments again with all the crap (no pun intended) they entailed (especially the adrenal insufficiency where I couldn’t walk more than a few yards without resting, oh and let’s not forget the wonderful colitis that brought me there) again in a heartbeat if they led to NED.
I also think that it might take one or three failed treatments to get to that mind-set.
Cheers,
Karen

Hey Charlie,
I agree with all that you say.
I think that in this particular the poster was deterred by IL-2’s nasty side-effects, perhaps not realizing that they are treated as they occur and quickly resolve as soon as the treatment ends.
Personally, I would go through all my treatments again with all the crap (no pun intended) they entailed (especially the adrenal insufficiency where I couldn’t walk more than a few yards without resting, oh and let’s not forget the wonderful colitis that brought me there) again in a heartbeat if they led to NED.
I also think that it might take one or three failed treatments to get to that mind-set.
Cheers,
Karen

Hey Charlie,
I agree with all that you say.
I think that in this particular the poster was deterred by IL-2’s nasty side-effects, perhaps not realizing that they are treated as they occur and quickly resolve as soon as the treatment ends.
Personally, I would go through all my treatments again with all the crap (no pun intended) they entailed (especially the adrenal insufficiency where I couldn’t walk more than a few yards without resting, oh and let’s not forget the wonderful colitis that brought me there) again in a heartbeat if they led to NED.
I also think that it might take one or three failed treatments to get to that mind-set.
Cheers,
Karen

Charlie has his perspective and it seems valid for him so I can’t say he is wrong. I just feel there is another way to look at it. I sure didn’t like that lung biopsy, but other than that I have paid scant dues to have my life back, and there are others like me. I am a fourth stager in my third year in this fight and doing fine taking only 5 pills a day in the GSK BRAF/MEK trial.
I don’t think it sucks. I have a hard time not moving in the MRI brain scan every other month because I start laughing as I think of some of my fatter friends being tucked in that cigar tube for 47 minutes. The CT is like kissing your sister…no big deal, you can see the ceiling the whole time.
I also got radiated 15 times fairly close to my manly bits, and that made me nervous and then sick alright, but it passed and I eat like a crocodile ever since, and my privacies work just fine again.
The truth is I sometimes feel guilty reading about some of you who battled for years, and have fought for so long as it progressed and it is wearing you down as Charlie’s frustration shows. It is a lot easier to just come busting in at stage IV, as I did, and find out the best hope was a human trial.
The point is that we are not just saving our life, or prolonging it, we are opening the door to effectively treating this disease without all the drama of surgeries, chemical and radiological warfare, followed by almost certain death. It gives me a grand feeling. Attitude is everything.

Charlie has his perspective and it seems valid for him so I can’t say he is wrong. I just feel there is another way to look at it. I sure didn’t like that lung biopsy, but other than that I have paid scant dues to have my life back, and there are others like me. I am a fourth stager in my third year in this fight and doing fine taking only 5 pills a day in the GSK BRAF/MEK trial.
I don’t think it sucks. I have a hard time not moving in the MRI brain scan every other month because I start laughing as I think of some of my fatter friends being tucked in that cigar tube for 47 minutes. The CT is like kissing your sister…no big deal, you can see the ceiling the whole time.
I also got radiated 15 times fairly close to my manly bits, and that made me nervous and then sick alright, but it passed and I eat like a crocodile ever since, and my privacies work just fine again.
The truth is I sometimes feel guilty reading about some of you who battled for years, and have fought for so long as it progressed and it is wearing you down as Charlie’s frustration shows. It is a lot easier to just come busting in at stage IV, as I did, and find out the best hope was a human trial.
The point is that we are not just saving our life, or prolonging it, we are opening the door to effectively treating this disease without all the drama of surgeries, chemical and radiological warfare, followed by almost certain death. It gives me a grand feeling. Attitude is everything.

Charlie has his perspective and it seems valid for him so I can’t say he is wrong. I just feel there is another way to look at it. I sure didn’t like that lung biopsy, but other than that I have paid scant dues to have my life back, and there are others like me. I am a fourth stager in my third year in this fight and doing fine taking only 5 pills a day in the GSK BRAF/MEK trial.
I don’t think it sucks. I have a hard time not moving in the MRI brain scan every other month because I start laughing as I think of some of my fatter friends being tucked in that cigar tube for 47 minutes. The CT is like kissing your sister…no big deal, you can see the ceiling the whole time.
I also got radiated 15 times fairly close to my manly bits, and that made me nervous and then sick alright, but it passed and I eat like a crocodile ever since, and my privacies work just fine again.
The truth is I sometimes feel guilty reading about some of you who battled for years, and have fought for so long as it progressed and it is wearing you down as Charlie’s frustration shows. It is a lot easier to just come busting in at stage IV, as I did, and find out the best hope was a human trial.
The point is that we are not just saving our life, or prolonging it, we are opening the door to effectively treating this disease without all the drama of surgeries, chemical and radiological warfare, followed by almost certain death. It gives me a grand feeling. Attitude is everything.

As Charlie says, we are the test subjects for Melanoma trial treatments. In the past any trial less than a Class 3 was not likely to be of much, if any benefit. Development of Targeedt Chemotherapy has shown now that even a Class ! trial may be beneficial.
Of course what is easiest on one is a matter of definition for each of us. I made up my mind after reading about each of the different treatments available and communicating with numerous spouses of deceased melanoma patients whose Oncologists had recommended saving IL-2 to be their LAST resort. I was told in most of those cases their spouse had felled to recover from the general chemo treatments in time to try the IL-2 immunotherapy. I learned that it was normal to have onepretty rough week per week of IL-2 administration (from third day of IL-2 thru 2 days after last bag and then one returned to 85% or more of their previous status. The IL-2 has the shortest time to tell if one is having a positive response and one of the quickest recovery from treatment side effects. This allows movement quicker to other treatments if necessary.
To date nothing has proved to have across the board melanoma success the is much better than the IL-2 20-22% positive response (Which includes an across the board 5% result sometimes called a cure”.) For some people IL-2 is rougher than others, for some (but a little smaller %) Yervoy (Ipi) has worst side effects than IL-2.
If ease is what is after, waiting and dying for sure is probably the easiest.
What I wanted was the easiest with the highest probably of increasing my survival. IL-2 was the only thing that far and away met my criteria in early 2007. I went thru the full three courses (six weeks of IL-2 treatments). Without it I wouldn’t be here today.
IL-2 and Ipi are the only FDA approved treatments for across the board melanoma that meet my criteria.
In clinical trials anti-PD-1 currently looks like it may be the most most successful with least known side effects.
For B-RAF positive people one of the Anti-B-RAF drugs with the MEK inhibitor may be the easiest. Combo appears better with less side effects than either alone. In this context Zelboraf is positive on 50% of the 50% of melanoma patients that have BRAF. With a 50% occurrence rate on the 50% responders This gives a less than preferred long term overall rate. It does give a 25% rate for extending the survival of BRAF patients to at least one year.
They have not been enough trial information available to tell what the overall survival rates and longevity will be for c-kit positive people with melanoma. For the small % of c-kit melanoma patients (4 to 5%) the c-kit GIST, lymphoma and leukemia targeted chemo drugs appear quite interesting, with amazing success so far. One has essentially held my particular C-kit mutation stable for the past 4 years.
While these routes are what I consider the ones with the higher success rates with acceptable side-effects, I fully realize that there are many chemo drugs that kill melanoma in petri dishes. There are also some general Chemotherapy drugs that have proven successful in a small number of melanoma patients. Wish they would hurry up and figure out why what works on the few so that we would know what to take first!

As Charlie says, we are the test subjects for Melanoma trial treatments. In the past any trial less than a Class 3 was not likely to be of much, if any benefit. Development of Targeedt Chemotherapy has shown now that even a Class ! trial may be beneficial.
Of course what is easiest on one is a matter of definition for each of us. I made up my mind after reading about each of the different treatments available and communicating with numerous spouses of deceased melanoma patients whose Oncologists had recommended saving IL-2 to be their LAST resort. I was told in most of those cases their spouse had felled to recover from the general chemo treatments in time to try the IL-2 immunotherapy. I learned that it was normal to have onepretty rough week per week of IL-2 administration (from third day of IL-2 thru 2 days after last bag and then one returned to 85% or more of their previous status. The IL-2 has the shortest time to tell if one is having a positive response and one of the quickest recovery from treatment side effects. This allows movement quicker to other treatments if necessary.
To date nothing has proved to have across the board melanoma success the is much better than the IL-2 20-22% positive response (Which includes an across the board 5% result sometimes called a cure”.) For some people IL-2 is rougher than others, for some (but a little smaller %) Yervoy (Ipi) has worst side effects than IL-2.
If ease is what is after, waiting and dying for sure is probably the easiest.
What I wanted was the easiest with the highest probably of increasing my survival. IL-2 was the only thing that far and away met my criteria in early 2007. I went thru the full three courses (six weeks of IL-2 treatments). Without it I wouldn’t be here today.
IL-2 and Ipi are the only FDA approved treatments for across the board melanoma that meet my criteria.
In clinical trials anti-PD-1 currently looks like it may be the most most successful with least known side effects.
For B-RAF positive people one of the Anti-B-RAF drugs with the MEK inhibitor may be the easiest. Combo appears better with less side effects than either alone. In this context Zelboraf is positive on 50% of the 50% of melanoma patients that have BRAF. With a 50% occurrence rate on the 50% responders This gives a less than preferred long term overall rate. It does give a 25% rate for extending the survival of BRAF patients to at least one year.
They have not been enough trial information available to tell what the overall survival rates and longevity will be for c-kit positive people with melanoma. For the small % of c-kit melanoma patients (4 to 5%) the c-kit GIST, lymphoma and leukemia targeted chemo drugs appear quite interesting, with amazing success so far. One has essentially held my particular C-kit mutation stable for the past 4 years.
While these routes are what I consider the ones with the higher success rates with acceptable side-effects, I fully realize that there are many chemo drugs that kill melanoma in petri dishes. There are also some general Chemotherapy drugs that have proven successful in a small number of melanoma patients. Wish they would hurry up and figure out why what works on the few so that we would know what to take first!

As Charlie says, we are the test subjects for Melanoma trial treatments. In the past any trial less than a Class 3 was not likely to be of much, if any benefit. Development of Targeedt Chemotherapy has shown now that even a Class ! trial may be beneficial.
Of course what is easiest on one is a matter of definition for each of us. I made up my mind after reading about each of the different treatments available and communicating with numerous spouses of deceased melanoma patients whose Oncologists had recommended saving IL-2 to be their LAST resort. I was told in most of those cases their spouse had felled to recover from the general chemo treatments in time to try the IL-2 immunotherapy. I learned that it was normal to have onepretty rough week per week of IL-2 administration (from third day of IL-2 thru 2 days after last bag and then one returned to 85% or more of their previous status. The IL-2 has the shortest time to tell if one is having a positive response and one of the quickest recovery from treatment side effects. This allows movement quicker to other treatments if necessary.
To date nothing has proved to have across the board melanoma success the is much better than the IL-2 20-22% positive response (Which includes an across the board 5% result sometimes called a cure”.) For some people IL-2 is rougher than others, for some (but a little smaller %) Yervoy (Ipi) has worst side effects than IL-2.
If ease is what is after, waiting and dying for sure is probably the easiest.
What I wanted was the easiest with the highest probably of increasing my survival. IL-2 was the only thing that far and away met my criteria in early 2007. I went thru the full three courses (six weeks of IL-2 treatments). Without it I wouldn’t be here today.
IL-2 and Ipi are the only FDA approved treatments for across the board melanoma that meet my criteria.
In clinical trials anti-PD-1 currently looks like it may be the most most successful with least known side effects.
For B-RAF positive people one of the Anti-B-RAF drugs with the MEK inhibitor may be the easiest. Combo appears better with less side effects than either alone. In this context Zelboraf is positive on 50% of the 50% of melanoma patients that have BRAF. With a 50% occurrence rate on the 50% responders This gives a less than preferred long term overall rate. It does give a 25% rate for extending the survival of BRAF patients to at least one year.
They have not been enough trial information available to tell what the overall survival rates and longevity will be for c-kit positive people with melanoma. For the small % of c-kit melanoma patients (4 to 5%) the c-kit GIST, lymphoma and leukemia targeted chemo drugs appear quite interesting, with amazing success so far. One has essentially held my particular C-kit mutation stable for the past 4 years.
While these routes are what I consider the ones with the higher success rates with acceptable side-effects, I fully realize that there are many chemo drugs that kill melanoma in petri dishes. There are also some general Chemotherapy drugs that have proven successful in a small number of melanoma patients. Wish they would hurry up and figure out why what works on the few so that we would know what to take first!

I would definitely recommend a highly experienced IL-2 Oncologist and staff for your husband (and any one else taking IL-2).  I would also recommend talking with Dr. Geoffrey Weiss at UVA regarding the feasibility/any negative effects of having only one kidney would have on the treatment.  I would have no problem with Dr Weiss and his staff treating anyone he checks out as qualified to receive IL-2.  He has 30 years experience with administering IL-2 and though Head of the UVA Medical Oncology Department, personally reviews ones counts for each and every bag before approving its administration to his patients.  He started working with IL-2 in the ear;y 1980's and his work was important in geting it approved by the FDA in the late 1990's.

   It the Creatine levels are okay to start, and get below the proper limits he will withold bags of IL-2 until he has brought the levels up to a valid point.   The best way to keep the creatine level up is to drink regularly and not try to catchup after the levels drop.  Lack of input leads to the lack of output that is the main cause of elevated levels.  I am sure if you either call/email him at UVA or leave a message With Josie (his nurse), that he will respond to answer your questions.  I went thru 6 weeks of the treatments with him.

I would definitely recommend a highly experienced IL-2 Oncologist and staff for your husband (and any one else taking IL-2).  I would also recommend talking with Dr. Geoffrey Weiss at UVA regarding the feasibility/any negative effects of having only one kidney would have on the treatment.  I would have no problem with Dr Weiss and his staff treating anyone he checks out as qualified to receive IL-2.  He has 30 years experience with administering IL-2 and though Head of the UVA Medical Oncology Department, personally reviews ones counts for each and every bag before approving its administration to his patients.  He started working with IL-2 in the ear;y 1980's and his work was important in geting it approved by the FDA in the late 1990's.

   It the Creatine levels are okay to start, and get below the proper limits he will withold bags of IL-2 until he has brought the levels up to a valid point.   The best way to keep the creatine level up is to drink regularly and not try to catchup after the levels drop.  Lack of input leads to the lack of output that is the main cause of elevated levels.  I am sure if you either call/email him at UVA or leave a message With Josie (his nurse), that he will respond to answer your questions.  I went thru 6 weeks of the treatments with him.

I would definitely recommend a highly experienced IL-2 Oncologist and staff for your husband (and any one else taking IL-2).  I would also recommend talking with Dr. Geoffrey Weiss at UVA regarding the feasibility/any negative effects of having only one kidney would have on the treatment.  I would have no problem with Dr Weiss and his staff treating anyone he checks out as qualified to receive IL-2.  He has 30 years experience with administering IL-2 and though Head of the UVA Medical Oncology Department, personally reviews ones counts for each and every bag before approving its administration to his patients.  He started working with IL-2 in the ear;y 1980's and his work was important in geting it approved by the FDA in the late 1990's.

   It the Creatine levels are okay to start, and get below the proper limits he will withold bags of IL-2 until he has brought the levels up to a valid point.   The best way to keep the creatine level up is to drink regularly and not try to catchup after the levels drop.  Lack of input leads to the lack of output that is the main cause of elevated levels.  I am sure if you either call/email him at UVA or leave a message With Josie (his nurse), that he will respond to answer your questions.  I went thru 6 weeks of the treatments with him.

Jim, I continue to find it interesting that other treatments are more likely to have positive results after IL-2 "fails".  I understand that some trials have been /are being started to examine the relationship between IL-2 and Ipi "failures"  and subsequent BRAF successes.

Jim, I continue to find it interesting that other treatments are more likely to have positive results after IL-2 "fails".  I understand that some trials have been /are being started to examine the relationship between IL-2 and Ipi "failures"  and subsequent BRAF successes.

Jim, I continue to find it interesting that other treatments are more likely to have positive results after IL-2 "fails".  I understand that some trials have been /are being started to examine the relationship between IL-2 and Ipi "failures"  and subsequent BRAF successes.

Jim, how very interesting. As you know, I “failed” Ipi and il-2 and so far am doing very well on Zel. Actually, I prefer to say that they failed me.
Seriously, Dr. Wolchok did say that my prior “failed” treatments could be playing a role here.
Take care all,
Karen

Jim, how very interesting. As you know, I “failed” Ipi and il-2 and so far am doing very well on Zel. Actually, I prefer to say that they failed me.
Seriously, Dr. Wolchok did say that my prior “failed” treatments could be playing a role here.
Take care all,
Karen

Jim, how very interesting. As you know, I “failed” Ipi and il-2 and so far am doing very well on Zel. Actually, I prefer to say that they failed me.
Seriously, Dr. Wolchok did say that my prior “failed” treatments could be playing a role here.
Take care all,
Karen

Jerry,

 

I agree. I am a scientist by training (PhD from Cornell in Chemistry). Aside from having the disease, I love and I am fascinated by the science of the disease. I am probably not the best patient; thankfully I have a wonderful and accepting Oncologist (Dr. Lawrence). Having been in this fight for while, I get some relief from trying to understand the science of it. It is so true that yes we are all the same species, at the same time, we are all so unique. The immune system is like a giant and complicated "buffer". It takes alot to jolt and provoke it. Personally, I don't really get sick (no colds, flu's etc. for the last 10 years). From that perspective, I have a strong immune system. Yet it failed to recognize and control a mutated melanin cell and allowed it to procreate and spread.

Having not only survived for the last 2 years, I have had a great 2 years on GSK BRAF/MEK, living a great life and I am in great shape now with a barely visible piece of tumor left. I will admit I am very religious and believe it's a miracle, with the help of science.

When we talk of failure's in IL-2 or iPi, I think that might somewhat be a misnomer. Both treatments remain active in our bodies for some time after we are finished with the actual doses. Our immune system continue to experience the effects. My thoughts are that when we introduce a second targeted treatment (BRAF/MEK/PD-1 etc) shortly after the immuno treatment, the immune system has a better chance of "recognizing" the melanomas, perhaps because they are denatured, or changed in some manner. My friend John had substantial radiation shortly before his start on the BRAF/MEK trial as well, and currently experiencing  success. A combination approach seems to be leading to good success.

 

As a scientist, I really do believe that we are getting close to cracking this thing. 9 years ago when I first got diagnosed, Melanoma was right up there with Pancreatic cancer. Eventually, I believe it will be a disease much like AIDS, treated with an appropriate number of pills each day. I agree, it's still a race against time, but let's just stay in the race.

 

take care,

Jim

Jim, I think you should get in touch with our top medical researcher (by profession).  He is Jimmie B (James Breitfeller)     his Blog is : http://melanomamissionary.blogspot.com/

Do a searc on him here and in the archieves.

If the post don't work with the URL, I will try to email you with it.  We ddidn't used to have any problem with URL, but then scammers started filling the BB with fake post trying to sell handbag, etc that something had to be done.  That is why sometimes a word verification has to be read by a person and entered to even get a post on the board.

I have not met him in person, but find his work absolutely facinating.  Especially his following how what genes and pathways follow what timing in relation to the IPI and IL-2 treatments and why they worked to make him NED.

  I  have been  pushing the combinational aspproach for years now and Tim (our fairly new and fast learning Director) has actually been pushing Congress and the FDA to work  out agreements that will allow cobinational trials between seperate companies.  The MRF has actually contributed funds to help get this type trials conducted. 

    One problem is that Melanoma is much more complicated that HIV even.  Melanoma is not just one cancer as far as the signaling paths, oncoproteins, and treatments it can follow.  Even the C-kit melanoma I have abaout 4% of all melanoma's)
 is more than four different melanoma's. Melanoma so far may well be at least a hundred cancers for fighting. 

      If you  look up c-kit and GIST aand what else gleevec and similiar targeted drugs have been approved for, we are getting closer, thanks to the Genome work.

Wow,

Jimmie B is great. Incredible source of info on his blog. It will be a late night, lots of reading to do. First time I saw this level of mechanistic description. I feel sorry for my Oncologist at my next visit!!

 

take care,

Jim

Wow,

Jimmie B is great. Incredible source of info on his blog. It will be a late night, lots of reading to do. First time I saw this level of mechanistic description. I feel sorry for my Oncologist at my next visit!!

 

take care,

Jim

Wow,

Jimmie B is great. Incredible source of info on his blog. It will be a late night, lots of reading to do. First time I saw this level of mechanistic description. I feel sorry for my Oncologist at my next visit!!

 

take care,

Jim

Jim, I think you should get in touch with our top medical researcher (by profession).  He is Jimmie B (James Breitfeller)     his Blog is : http://melanomamissionary.blogspot.com/

Do a searc on him here and in the archieves.

If the post don't work with the URL, I will try to email you with it.  We ddidn't used to have any problem with URL, but then scammers started filling the BB with fake post trying to sell handbag, etc that something had to be done.  That is why sometimes a word verification has to be read by a person and entered to even get a post on the board.

I have not met him in person, but find his work absolutely facinating.  Especially his following how what genes and pathways follow what timing in relation to the IPI and IL-2 treatments and why they worked to make him NED.

  I  have been  pushing the combinational aspproach for years now and Tim (our fairly new and fast learning Director) has actually been pushing Congress and the FDA to work  out agreements that will allow cobinational trials between seperate companies.  The MRF has actually contributed funds to help get this type trials conducted. 

    One problem is that Melanoma is much more complicated that HIV even.  Melanoma is not just one cancer as far as the signaling paths, oncoproteins, and treatments it can follow.  Even the C-kit melanoma I have abaout 4% of all melanoma's)
 is more than four different melanoma's. Melanoma so far may well be at least a hundred cancers for fighting. 

      If you  look up c-kit and GIST aand what else gleevec and similiar targeted drugs have been approved for, we are getting closer, thanks to the Genome work.

Jim, I think you should get in touch with our top medical researcher (by profession).  He is Jimmie B (James Breitfeller)     his Blog is : http://melanomamissionary.blogspot.com/

Do a searc on him here and in the archieves.

If the post don't work with the URL, I will try to email you with it.  We ddidn't used to have any problem with URL, but then scammers started filling the BB with fake post trying to sell handbag, etc that something had to be done.  That is why sometimes a word verification has to be read by a person and entered to even get a post on the board.

I have not met him in person, but find his work absolutely facinating.  Especially his following how what genes and pathways follow what timing in relation to the IPI and IL-2 treatments and why they worked to make him NED.

  I  have been  pushing the combinational aspproach for years now and Tim (our fairly new and fast learning Director) has actually been pushing Congress and the FDA to work  out agreements that will allow cobinational trials between seperate companies.  The MRF has actually contributed funds to help get this type trials conducted. 

    One problem is that Melanoma is much more complicated that HIV even.  Melanoma is not just one cancer as far as the signaling paths, oncoproteins, and treatments it can follow.  Even the C-kit melanoma I have abaout 4% of all melanoma's)
 is more than four different melanoma's. Melanoma so far may well be at least a hundred cancers for fighting. 

      If you  look up c-kit and GIST aand what else gleevec and similiar targeted drugs have been approved for, we are getting closer, thanks to the Genome work.

Jerry,

 

I agree. I am a scientist by training (PhD from Cornell in Chemistry). Aside from having the disease, I love and I am fascinated by the science of the disease. I am probably not the best patient; thankfully I have a wonderful and accepting Oncologist (Dr. Lawrence). Having been in this fight for while, I get some relief from trying to understand the science of it. It is so true that yes we are all the same species, at the same time, we are all so unique. The immune system is like a giant and complicated "buffer". It takes alot to jolt and provoke it. Personally, I don't really get sick (no colds, flu's etc. for the last 10 years). From that perspective, I have a strong immune system. Yet it failed to recognize and control a mutated melanin cell and allowed it to procreate and spread.

Having not only survived for the last 2 years, I have had a great 2 years on GSK BRAF/MEK, living a great life and I am in great shape now with a barely visible piece of tumor left. I will admit I am very religious and believe it's a miracle, with the help of science.

When we talk of failure's in IL-2 or iPi, I think that might somewhat be a misnomer. Both treatments remain active in our bodies for some time after we are finished with the actual doses. Our immune system continue to experience the effects. My thoughts are that when we introduce a second targeted treatment (BRAF/MEK/PD-1 etc) shortly after the immuno treatment, the immune system has a better chance of "recognizing" the melanomas, perhaps because they are denatured, or changed in some manner. My friend John had substantial radiation shortly before his start on the BRAF/MEK trial as well, and currently experiencing  success. A combination approach seems to be leading to good success.

 

As a scientist, I really do believe that we are getting close to cracking this thing. 9 years ago when I first got diagnosed, Melanoma was right up there with Pancreatic cancer. Eventually, I believe it will be a disease much like AIDS, treated with an appropriate number of pills each day. I agree, it's still a race against time, but let's just stay in the race.

 

take care,

Jim

Jerry,

 

I agree. I am a scientist by training (PhD from Cornell in Chemistry). Aside from having the disease, I love and I am fascinated by the science of the disease. I am probably not the best patient; thankfully I have a wonderful and accepting Oncologist (Dr. Lawrence). Having been in this fight for while, I get some relief from trying to understand the science of it. It is so true that yes we are all the same species, at the same time, we are all so unique. The immune system is like a giant and complicated "buffer". It takes alot to jolt and provoke it. Personally, I don't really get sick (no colds, flu's etc. for the last 10 years). From that perspective, I have a strong immune system. Yet it failed to recognize and control a mutated melanin cell and allowed it to procreate and spread.

Having not only survived for the last 2 years, I have had a great 2 years on GSK BRAF/MEK, living a great life and I am in great shape now with a barely visible piece of tumor left. I will admit I am very religious and believe it's a miracle, with the help of science.

When we talk of failure's in IL-2 or iPi, I think that might somewhat be a misnomer. Both treatments remain active in our bodies for some time after we are finished with the actual doses. Our immune system continue to experience the effects. My thoughts are that when we introduce a second targeted treatment (BRAF/MEK/PD-1 etc) shortly after the immuno treatment, the immune system has a better chance of "recognizing" the melanomas, perhaps because they are denatured, or changed in some manner. My friend John had substantial radiation shortly before his start on the BRAF/MEK trial as well, and currently experiencing  success. A combination approach seems to be leading to good success.

 

As a scientist, I really do believe that we are getting close to cracking this thing. 9 years ago when I first got diagnosed, Melanoma was right up there with Pancreatic cancer. Eventually, I believe it will be a disease much like AIDS, treated with an appropriate number of pills each day. I agree, it's still a race against time, but let's just stay in the race.

 

take care,

Jim