Interferon or Watch & Wait?
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Interferon or Watch & Wait?

› Forums › Cutaneous Melanoma Community › Interferon or Watch & Wait?

  • Post
    • January 15, 2013 at 6:25 am
    tony
    Participant

    Hi Everyone,

     

    I'm new here but I am already gaining knowledge and support from the many posts on the forum. Its great to see so much support and empathy. I hope that as time, and my knowledge, progress that I will be able to contribute as well.

     

    Hi Everyone,

     

    I'm new here but I am already gaining knowledge and support from the many posts on the forum. Its great to see so much support and empathy. I hope that as time, and my knowledge, progress that I will be able to contribute as well.

     

    I was diagnosed with metastatic melignant melanoma on 22nd Dec following a Lymph node biopsy. I am now recovering from a full Lymph Node Dissection (LND). In total 3 lymph nodes in my left axcilla were affected. When the LND was analysed they found no evidence of melanoma in the surrounding tissue. I have not yet had a meolecular test for BrafV600 or C-Kit mutations but will be asking my onc to arrange this when I see him next.

     

    So, the dilema… Interferon or Watch & Wait? I apologise if this is repetitious from previous posts but I wanted to share my thoughts. The summary of all the trials conducted on High Dose Interferon (HDI) appears to be that it benefits a small number of patients by extending the Relapse Free Survival time by an average of 7-9 months but has no effect on Overall Survival time compared to no further treatment after surgery. Is it worth a year of being quite sick on the off-chance that I might be in the small number of patients that respond? If I do respond is the treatment year factored into 7-9 months of RFS I might gain? I'm not sure I want to risk feeling sick for a full year of my remaining life when its almost certainly not going to mean I live any longer. I would like to be able to enjoy every day to the fullest extent. One significant study concluded that "interferon did not reduce the risk of the cancer coming back. It was no better than having no further treatment after surgery."

     

    http://www.cancerresearchuk.org/cancer-help/trials/aim-high-a-study-of-adjuvant-interferon-in-melanoma?

     

    I am doing everything possible with diet and natural therapies to make my system as inhospitable to cancer as possible (including eating organic, avoiding all sugar, and keeping my system in an alkaline state) but traditionally I have always favoured the alopathic route. However is HDI worth considering? Maybe the initial one month of IV treatment but not the 11 months of SC injections as a compromise?

     

    Your thoughts and opinions would be really valuable as I'm really struggling with this decision.

     

    Many thanks,

    Tony

Viewing 35 reply threads
  • Replies
      • January 15, 2013 at 11:13 am
      buffcody
      Participant

      You will have, I presume, many other more knowledgeable replies than mine.  I have not gone through the interferon treatments, but a couple things struck me in your post.  First, you write you have been diagnosed with metastatic melanoma.  But your description of your situation reads to me like a description of Stage III melanoma.  Metastatic is Stage IV. Stage IV might offer more and better treatment options, but it has a worse prognosis.  I'd check with your doctor about the use of the word, "metastatic." 

      Second, the link is to an article, which, while it might be still accurate is based on data from 1995 and before.  It would be good to look at more recent research as well as hearing on this Forum from experienced Interferon hands.

      All the best in your quest for many years of freedom from the Beast.

      • January 15, 2013 at 11:13 am
      buffcody
      Participant

      You will have, I presume, many other more knowledgeable replies than mine.  I have not gone through the interferon treatments, but a couple things struck me in your post.  First, you write you have been diagnosed with metastatic melanoma.  But your description of your situation reads to me like a description of Stage III melanoma.  Metastatic is Stage IV. Stage IV might offer more and better treatment options, but it has a worse prognosis.  I'd check with your doctor about the use of the word, "metastatic." 

      Second, the link is to an article, which, while it might be still accurate is based on data from 1995 and before.  It would be good to look at more recent research as well as hearing on this Forum from experienced Interferon hands.

      All the best in your quest for many years of freedom from the Beast.

        • January 16, 2013 at 4:08 am
        JerryfromFauq
        Participant

        NCI definition:

        metastatic  listen  (meh-tuh-STA-tik)

          Having to do with metastasis, which is the spread of cancer from the primary site (place where it started) to other places in the body.

         

        This does not say anything about stage. 

        I learned six years ago when I fisrt looked up malignant and mestastatic melanoma, the the words metastatic and malignant are often used to stress that aa type of cancer does not just remain in one location, but can spread throught the body.  Melanomaa being one of the most agressive at spreading.  An in-transit melanoma is metastising even if it has not reached the nodes (which would be Stage III).

        • January 16, 2013 at 4:08 am
        JerryfromFauq
        Participant

        NCI definition:

        metastatic  listen  (meh-tuh-STA-tik)

          Having to do with metastasis, which is the spread of cancer from the primary site (place where it started) to other places in the body.

         

        This does not say anything about stage. 

        I learned six years ago when I fisrt looked up malignant and mestastatic melanoma, the the words metastatic and malignant are often used to stress that aa type of cancer does not just remain in one location, but can spread throught the body.  Melanomaa being one of the most agressive at spreading.  An in-transit melanoma is metastising even if it has not reached the nodes (which would be Stage III).

        • January 16, 2013 at 4:08 am
        JerryfromFauq
        Participant

        NCI definition:

        metastatic  listen  (meh-tuh-STA-tik)

          Having to do with metastasis, which is the spread of cancer from the primary site (place where it started) to other places in the body.

         

        This does not say anything about stage. 

        I learned six years ago when I fisrt looked up malignant and mestastatic melanoma, the the words metastatic and malignant are often used to stress that aa type of cancer does not just remain in one location, but can spread throught the body.  Melanomaa being one of the most agressive at spreading.  An in-transit melanoma is metastising even if it has not reached the nodes (which would be Stage III).

      • January 15, 2013 at 11:13 am
      buffcody
      Participant

      You will have, I presume, many other more knowledgeable replies than mine.  I have not gone through the interferon treatments, but a couple things struck me in your post.  First, you write you have been diagnosed with metastatic melanoma.  But your description of your situation reads to me like a description of Stage III melanoma.  Metastatic is Stage IV. Stage IV might offer more and better treatment options, but it has a worse prognosis.  I'd check with your doctor about the use of the word, "metastatic." 

      Second, the link is to an article, which, while it might be still accurate is based on data from 1995 and before.  It would be good to look at more recent research as well as hearing on this Forum from experienced Interferon hands.

      All the best in your quest for many years of freedom from the Beast.

      • January 15, 2013 at 11:47 am
      Linny
      Participant

      Hi Tony,

      Sorry to hear you've had to join this club. I was given the following choices after my diagnosis: interferon, watch & wait, or clinical trial. I didn't want to be sick for an entire year with interferon and the thought of self-injections didn't appeal to me either, nor did I feel 100% comfortable with watch and wait. For me a clinical trial was the right fit because it gave me frequent observation plus decent odds of receiving a vaccine. You might want to ask your doctor if there are any trials available for you.

       

      To Buffcody: Tony actually is Stage III because there's no mention of the melanoma having traveled to other organs. I also find the term "metastatic malignant melanoma" confusing for Stage III patients. Maybe Janner or someone else can help clarify it? The same term also appears on my pathology report.

      • January 15, 2013 at 11:47 am
      Linny
      Participant

      Hi Tony,

      Sorry to hear you've had to join this club. I was given the following choices after my diagnosis: interferon, watch & wait, or clinical trial. I didn't want to be sick for an entire year with interferon and the thought of self-injections didn't appeal to me either, nor did I feel 100% comfortable with watch and wait. For me a clinical trial was the right fit because it gave me frequent observation plus decent odds of receiving a vaccine. You might want to ask your doctor if there are any trials available for you.

       

      To Buffcody: Tony actually is Stage III because there's no mention of the melanoma having traveled to other organs. I also find the term "metastatic malignant melanoma" confusing for Stage III patients. Maybe Janner or someone else can help clarify it? The same term also appears on my pathology report.

        • January 15, 2013 at 12:48 pm
        POW
        Participant

        Buffcody makes a good point– why were you only given 2 options? Why not a third option of a clinical trial? Yes, most clinical trials are limited to Stage IV patients, but they are now starting to open some to Stage III patients, too. I suggest that you get to a major melanoma specialty center for a second opinion before you make up your mind about what to do. And stop reading old research reports. The world of melanoma treatment and survival stastics has improved remarkably in the last 5 years and the stastics are now much better than they used to be. Stop scaraing yourself with out-of-date data. 

        • January 15, 2013 at 12:48 pm
        POW
        Participant

        Buffcody makes a good point– why were you only given 2 options? Why not a third option of a clinical trial? Yes, most clinical trials are limited to Stage IV patients, but they are now starting to open some to Stage III patients, too. I suggest that you get to a major melanoma specialty center for a second opinion before you make up your mind about what to do. And stop reading old research reports. The world of melanoma treatment and survival stastics has improved remarkably in the last 5 years and the stastics are now much better than they used to be. Stop scaraing yourself with out-of-date data. 

        • January 15, 2013 at 12:48 pm
        POW
        Participant

        Buffcody makes a good point– why were you only given 2 options? Why not a third option of a clinical trial? Yes, most clinical trials are limited to Stage IV patients, but they are now starting to open some to Stage III patients, too. I suggest that you get to a major melanoma specialty center for a second opinion before you make up your mind about what to do. And stop reading old research reports. The world of melanoma treatment and survival stastics has improved remarkably in the last 5 years and the stastics are now much better than they used to be. Stop scaraing yourself with out-of-date data. 

      • January 15, 2013 at 11:47 am
      Linny
      Participant

      Hi Tony,

      Sorry to hear you've had to join this club. I was given the following choices after my diagnosis: interferon, watch & wait, or clinical trial. I didn't want to be sick for an entire year with interferon and the thought of self-injections didn't appeal to me either, nor did I feel 100% comfortable with watch and wait. For me a clinical trial was the right fit because it gave me frequent observation plus decent odds of receiving a vaccine. You might want to ask your doctor if there are any trials available for you.

       

      To Buffcody: Tony actually is Stage III because there's no mention of the melanoma having traveled to other organs. I also find the term "metastatic malignant melanoma" confusing for Stage III patients. Maybe Janner or someone else can help clarify it? The same term also appears on my pathology report.

      • January 15, 2013 at 12:49 pm
      JC
      Participant

      what are the more current/better statistics?

      • January 15, 2013 at 12:49 pm
      JC
      Participant

      what are the more current/better statistics?

        • January 15, 2013 at 1:06 pm
        POW
        Participant

        Good question. The Phase 3 trial results for Ipilimumab were published in August, 2010. The Phase 3 trial results for vemurafenib were published in June, 2011. I don't pay much attention to anything published before that. Consquently, I find myself reading a lot of abstracts from scientific meetings. Those data are only preliminary and are not actual peer-reviewed articles, but they reflect the most current thinking in the field. 

        • January 15, 2013 at 1:06 pm
        POW
        Participant

        Good question. The Phase 3 trial results for Ipilimumab were published in August, 2010. The Phase 3 trial results for vemurafenib were published in June, 2011. I don't pay much attention to anything published before that. Consquently, I find myself reading a lot of abstracts from scientific meetings. Those data are only preliminary and are not actual peer-reviewed articles, but they reflect the most current thinking in the field. 

        • January 15, 2013 at 1:06 pm
        POW
        Participant

        Good question. The Phase 3 trial results for Ipilimumab were published in August, 2010. The Phase 3 trial results for vemurafenib were published in June, 2011. I don't pay much attention to anything published before that. Consquently, I find myself reading a lot of abstracts from scientific meetings. Those data are only preliminary and are not actual peer-reviewed articles, but they reflect the most current thinking in the field. 

        • January 15, 2013 at 1:14 pm
        tony
        Participant

        Thanks all of you for your input – much appreciated. I am going to bring up Clinical Trials with my onc when I see him next. However, I don't think Melanoma trials are run extensively in India as its really rare here. I am a Brit living in India so I am now considering returning to the UK to enter a clinical trial there.

        I have looked at several sites with loads of trials listed but none that I seem eligable to enter or that would be helpful to me at my stage. Most seem to specify 'Stage III with unresectable tumour or Stage IV'. If anyone knows of any particularly promising therapies currently under trial that I should look out for when I'm in the UK I'd love to hear about them.

        • January 15, 2013 at 1:14 pm
        tony
        Participant

        Thanks all of you for your input – much appreciated. I am going to bring up Clinical Trials with my onc when I see him next. However, I don't think Melanoma trials are run extensively in India as its really rare here. I am a Brit living in India so I am now considering returning to the UK to enter a clinical trial there.

        I have looked at several sites with loads of trials listed but none that I seem eligable to enter or that would be helpful to me at my stage. Most seem to specify 'Stage III with unresectable tumour or Stage IV'. If anyone knows of any particularly promising therapies currently under trial that I should look out for when I'm in the UK I'd love to hear about them.

        • January 15, 2013 at 2:16 pm
        POW
        Participant

        1. No, they probably don't do many clinical trials in India. There are several folks on this board who live in the UK. You might want to post a message titled: "Clinical Trials in UK?" or something like that so they will notice it and respond. 

        2. Melanoma is one of the few cancers that is readily attacked and killed by your immune system. That is why so many of the new melanoma treatments are aimed at stimulating the immune system. So your approach of using diet and exercise to develop a strong immune system is right on target. Keep doing that and it may be years before you develop another metastasis. Some of the newer treatments now in clinical trials may be on the market by then. 

        3. When you have time, complete your profile on this forum. Include the main points of your pathology report, if possible. That way, as time goes on, the experienced melanoma patients on the forum will be able to offer you their best advice. 

        • January 15, 2013 at 2:16 pm
        POW
        Participant

        1. No, they probably don't do many clinical trials in India. There are several folks on this board who live in the UK. You might want to post a message titled: "Clinical Trials in UK?" or something like that so they will notice it and respond. 

        2. Melanoma is one of the few cancers that is readily attacked and killed by your immune system. That is why so many of the new melanoma treatments are aimed at stimulating the immune system. So your approach of using diet and exercise to develop a strong immune system is right on target. Keep doing that and it may be years before you develop another metastasis. Some of the newer treatments now in clinical trials may be on the market by then. 

        3. When you have time, complete your profile on this forum. Include the main points of your pathology report, if possible. That way, as time goes on, the experienced melanoma patients on the forum will be able to offer you their best advice. 

        • January 15, 2013 at 2:16 pm
        POW
        Participant

        1. No, they probably don't do many clinical trials in India. There are several folks on this board who live in the UK. You might want to post a message titled: "Clinical Trials in UK?" or something like that so they will notice it and respond. 

        2. Melanoma is one of the few cancers that is readily attacked and killed by your immune system. That is why so many of the new melanoma treatments are aimed at stimulating the immune system. So your approach of using diet and exercise to develop a strong immune system is right on target. Keep doing that and it may be years before you develop another metastasis. Some of the newer treatments now in clinical trials may be on the market by then. 

        3. When you have time, complete your profile on this forum. Include the main points of your pathology report, if possible. That way, as time goes on, the experienced melanoma patients on the forum will be able to offer you their best advice. 

        • January 15, 2013 at 1:14 pm
        tony
        Participant

        Thanks all of you for your input – much appreciated. I am going to bring up Clinical Trials with my onc when I see him next. However, I don't think Melanoma trials are run extensively in India as its really rare here. I am a Brit living in India so I am now considering returning to the UK to enter a clinical trial there.

        I have looked at several sites with loads of trials listed but none that I seem eligable to enter or that would be helpful to me at my stage. Most seem to specify 'Stage III with unresectable tumour or Stage IV'. If anyone knows of any particularly promising therapies currently under trial that I should look out for when I'm in the UK I'd love to hear about them.

      • January 15, 2013 at 12:49 pm
      JC
      Participant

      what are the more current/better statistics?

      • January 15, 2013 at 2:22 pm
      JC
      Participant

      "Melanoma is one of the few cancers that is readily attacked and killed by your immune system"…it's ironic, you'd think this would be one type of cancer that could be more treatable because of that, but it seems to be one of the nastiest, most aggressive, out of control types of cancer one can get

      • January 15, 2013 at 2:22 pm
      JC
      Participant

      "Melanoma is one of the few cancers that is readily attacked and killed by your immune system"…it's ironic, you'd think this would be one type of cancer that could be more treatable because of that, but it seems to be one of the nastiest, most aggressive, out of control types of cancer one can get

      • January 15, 2013 at 2:22 pm
      JC
      Participant

      "Melanoma is one of the few cancers that is readily attacked and killed by your immune system"…it's ironic, you'd think this would be one type of cancer that could be more treatable because of that, but it seems to be one of the nastiest, most aggressive, out of control types of cancer one can get

      • January 15, 2013 at 2:54 pm
      kpcollins31
      Participant

      Tony – I went through the same decision process you are now going through and decided on "watch and wait" myself. Clearly, this is a personal decision. My rationale was that I did not want to significantly reduce my quality of life for a treatment that does not appear to offer any statistical benefit. My oncologist (melanoma speciailist) did not recommend interferon at the time I made the decision. He had suggested a potential clinical trial (vaccine) but it turns out I was not qualified for it.

      I am happy with my decision. I feel great and hit the gym several times a week. Stay strong.

      Kevin

      • January 15, 2013 at 2:54 pm
      kpcollins31
      Participant

      Tony – I went through the same decision process you are now going through and decided on "watch and wait" myself. Clearly, this is a personal decision. My rationale was that I did not want to significantly reduce my quality of life for a treatment that does not appear to offer any statistical benefit. My oncologist (melanoma speciailist) did not recommend interferon at the time I made the decision. He had suggested a potential clinical trial (vaccine) but it turns out I was not qualified for it.

      I am happy with my decision. I feel great and hit the gym several times a week. Stay strong.

      Kevin

        • January 15, 2013 at 3:48 pm
        mel123
        Participant

        Tony, my diagnosis is similar to yours, and at first I had no interest in a clinical trial, so your 2 options were the same as mine. I felt the same way about interferon, why spend a year of my life feeling sick, when the chance of actually prolonging my life was slim to none? Then, after getting a 2nd opinion and learning more about the clinical trial I was eligible for, I reconsidered that option. I ended up participating in a clinical trial comparing interferon to ipilimumab, and got the low dose ipi arm, which was pretty fortunate. It was a roll of the dice, but I figured I'd give the interferon a shot if I was randomized into that category, with the understanding between my doctor and I that I could and would quit if it made me too sick. So far the ipi and I have gotten along just fine, and I hope that soon it's available to stage III patients without playing roulette in a trial!

        You have to make your own decision based on what you feel is right for you, but I would definitely at least look into that trial to see if it's available to you in India or in the UK if you are willing and able to go back there. Also, once you're tested for the BRAF mutation, if you're positive, there is another medicine for that, Zelboraf. I don't know much about it because I'm BRAF negative, but there's a ton of info on here. 

        Best of luck to you!

        Melissa

        • January 15, 2013 at 3:48 pm
        mel123
        Participant

        Tony, my diagnosis is similar to yours, and at first I had no interest in a clinical trial, so your 2 options were the same as mine. I felt the same way about interferon, why spend a year of my life feeling sick, when the chance of actually prolonging my life was slim to none? Then, after getting a 2nd opinion and learning more about the clinical trial I was eligible for, I reconsidered that option. I ended up participating in a clinical trial comparing interferon to ipilimumab, and got the low dose ipi arm, which was pretty fortunate. It was a roll of the dice, but I figured I'd give the interferon a shot if I was randomized into that category, with the understanding between my doctor and I that I could and would quit if it made me too sick. So far the ipi and I have gotten along just fine, and I hope that soon it's available to stage III patients without playing roulette in a trial!

        You have to make your own decision based on what you feel is right for you, but I would definitely at least look into that trial to see if it's available to you in India or in the UK if you are willing and able to go back there. Also, once you're tested for the BRAF mutation, if you're positive, there is another medicine for that, Zelboraf. I don't know much about it because I'm BRAF negative, but there's a ton of info on here. 

        Best of luck to you!

        Melissa

        • January 15, 2013 at 3:48 pm
        mel123
        Participant

        Tony, my diagnosis is similar to yours, and at first I had no interest in a clinical trial, so your 2 options were the same as mine. I felt the same way about interferon, why spend a year of my life feeling sick, when the chance of actually prolonging my life was slim to none? Then, after getting a 2nd opinion and learning more about the clinical trial I was eligible for, I reconsidered that option. I ended up participating in a clinical trial comparing interferon to ipilimumab, and got the low dose ipi arm, which was pretty fortunate. It was a roll of the dice, but I figured I'd give the interferon a shot if I was randomized into that category, with the understanding between my doctor and I that I could and would quit if it made me too sick. So far the ipi and I have gotten along just fine, and I hope that soon it's available to stage III patients without playing roulette in a trial!

        You have to make your own decision based on what you feel is right for you, but I would definitely at least look into that trial to see if it's available to you in India or in the UK if you are willing and able to go back there. Also, once you're tested for the BRAF mutation, if you're positive, there is another medicine for that, Zelboraf. I don't know much about it because I'm BRAF negative, but there's a ton of info on here. 

        Best of luck to you!

        Melissa

        • January 15, 2013 at 5:15 pm
        NYKaren
        Participant
        Hi there,
        I’m pretty sure they can do the gene testing on the tumor slices they already have on hand. I have metestastic melanoma and am considered stage IIIc unresectable. I don’t know what the options are for you in England, but I would make sure that your testing is done with the most up-to-date tests, for example, older BRAF tests showed several false-negatives (of which I was one–now doing well on Zelboraf).
        Good luck and please let us know how you are doing.
        Karen
        • January 15, 2013 at 5:15 pm
        NYKaren
        Participant
        Hi there,
        I’m pretty sure they can do the gene testing on the tumor slices they already have on hand. I have metestastic melanoma and am considered stage IIIc unresectable. I don’t know what the options are for you in England, but I would make sure that your testing is done with the most up-to-date tests, for example, older BRAF tests showed several false-negatives (of which I was one–now doing well on Zelboraf).
        Good luck and please let us know how you are doing.
        Karen
        • January 15, 2013 at 5:15 pm
        NYKaren
        Participant
        Hi there,
        I’m pretty sure they can do the gene testing on the tumor slices they already have on hand. I have metestastic melanoma and am considered stage IIIc unresectable. I don’t know what the options are for you in England, but I would make sure that your testing is done with the most up-to-date tests, for example, older BRAF tests showed several false-negatives (of which I was one–now doing well on Zelboraf).
        Good luck and please let us know how you are doing.
        Karen
        • January 15, 2013 at 5:35 pm
        tony
        Participant

        A little off topic but does anyone have any links to info and stats on Ipilimummab and it's efficacy as an adjuvant therapy following surgery? I'll also check elsewhere on the forum.

        Thanks again for all the really helpful advice.

        • January 15, 2013 at 5:35 pm
        tony
        Participant

        A little off topic but does anyone have any links to info and stats on Ipilimummab and it's efficacy as an adjuvant therapy following surgery? I'll also check elsewhere on the forum.

        Thanks again for all the really helpful advice.

        • January 15, 2013 at 5:35 pm
        tony
        Participant

        A little off topic but does anyone have any links to info and stats on Ipilimummab and it's efficacy as an adjuvant therapy following surgery? I'll also check elsewhere on the forum.

        Thanks again for all the really helpful advice.

        • January 15, 2013 at 5:46 pm
        mel123
        Participant

        I don't know if there are good numbers as far as efficacy, since it's still fairly new, but definitely search for it on here (try ipi, ippi, ipilimumab, and yervoy, those seem to be all the different names it's called), and also search for it on the internet and read articles from reliable sources like cancer websites, universities, and hospitals. I realized last night that  it could really be 5-10 years before they know the survival rates, and by then there could be something newer and better (hopefully at least!).

        • January 16, 2013 at 4:52 am
        JerryfromFauq
        Participant

        Also called Anti-CTLA-4 (used before and with the other names).  Yes, you are correct in that it is normally five and ten years after after Stage III clinical trials start before we can get valid long term survival rates.  Better numbers are actually 5 and 10 years after FDA approval of a treatment.

           There are various vaccine trials that have been and are being available to Stage III melanoma patients in attempts to lower the metastasis rate.

                    On the question of "watch and wait", this is harder to do.  When I was at that point and inelgible for the vaccine trials (wrong HLA type), I too did a lot of research on the Interferon and was very unhappy with what I learned.  Basically I read that in about 4% of patients that took the interferon obtained about a 50 fold boast to their immune system, 9% that took it had a faster than normal spread, and that most of the other 87% were feeling like they had experienced a year of having 10 bad cases of the flu at the same time.  Since then I have observed that the younger one is the easier time they generally have with the interferon side effects. 

             I have been pushing for lower level administration of both IL-2 and the newer immunotherapy and targeted therapy drugs to be used as adjuant treatments for Stage III patients that are NED from surgery.  I see that some trials have finally been started along these lines.  There is at least one or more trials where they are trying to determine the factors needed to determine who will respond favorable to the interferon.

         

         

        • January 16, 2013 at 4:52 am
        JerryfromFauq
        Participant

        Also called Anti-CTLA-4 (used before and with the other names).  Yes, you are correct in that it is normally five and ten years after after Stage III clinical trials start before we can get valid long term survival rates.  Better numbers are actually 5 and 10 years after FDA approval of a treatment.

           There are various vaccine trials that have been and are being available to Stage III melanoma patients in attempts to lower the metastasis rate.

                    On the question of "watch and wait", this is harder to do.  When I was at that point and inelgible for the vaccine trials (wrong HLA type), I too did a lot of research on the Interferon and was very unhappy with what I learned.  Basically I read that in about 4% of patients that took the interferon obtained about a 50 fold boast to their immune system, 9% that took it had a faster than normal spread, and that most of the other 87% were feeling like they had experienced a year of having 10 bad cases of the flu at the same time.  Since then I have observed that the younger one is the easier time they generally have with the interferon side effects. 

             I have been pushing for lower level administration of both IL-2 and the newer immunotherapy and targeted therapy drugs to be used as adjuant treatments for Stage III patients that are NED from surgery.  I see that some trials have finally been started along these lines.  There is at least one or more trials where they are trying to determine the factors needed to determine who will respond favorable to the interferon.

         

         

        • January 16, 2013 at 4:52 am
        JerryfromFauq
        Participant

        Also called Anti-CTLA-4 (used before and with the other names).  Yes, you are correct in that it is normally five and ten years after after Stage III clinical trials start before we can get valid long term survival rates.  Better numbers are actually 5 and 10 years after FDA approval of a treatment.

           There are various vaccine trials that have been and are being available to Stage III melanoma patients in attempts to lower the metastasis rate.

                    On the question of "watch and wait", this is harder to do.  When I was at that point and inelgible for the vaccine trials (wrong HLA type), I too did a lot of research on the Interferon and was very unhappy with what I learned.  Basically I read that in about 4% of patients that took the interferon obtained about a 50 fold boast to their immune system, 9% that took it had a faster than normal spread, and that most of the other 87% were feeling like they had experienced a year of having 10 bad cases of the flu at the same time.  Since then I have observed that the younger one is the easier time they generally have with the interferon side effects. 

             I have been pushing for lower level administration of both IL-2 and the newer immunotherapy and targeted therapy drugs to be used as adjuant treatments for Stage III patients that are NED from surgery.  I see that some trials have finally been started along these lines.  There is at least one or more trials where they are trying to determine the factors needed to determine who will respond favorable to the interferon.

         

         

        • January 15, 2013 at 5:46 pm
        mel123
        Participant

        I don't know if there are good numbers as far as efficacy, since it's still fairly new, but definitely search for it on here (try ipi, ippi, ipilimumab, and yervoy, those seem to be all the different names it's called), and also search for it on the internet and read articles from reliable sources like cancer websites, universities, and hospitals. I realized last night that  it could really be 5-10 years before they know the survival rates, and by then there could be something newer and better (hopefully at least!).

        • January 15, 2013 at 5:46 pm
        mel123
        Participant

        I don't know if there are good numbers as far as efficacy, since it's still fairly new, but definitely search for it on here (try ipi, ippi, ipilimumab, and yervoy, those seem to be all the different names it's called), and also search for it on the internet and read articles from reliable sources like cancer websites, universities, and hospitals. I realized last night that  it could really be 5-10 years before they know the survival rates, and by then there could be something newer and better (hopefully at least!).

        • January 15, 2013 at 8:16 pm
        Janner
        Participant

        You probably won't find any numbers on efficacy…. that's why it is in clinical trials comparing it to Interferon as an adjuvant treatment.  Interferon is the "gold standard" for stage III and the trials are trying to determine if ipi is more, less, or equally effective in an adjuvant setting.  You will find efficacy numbers for stage IV treatment, but maybe only some preliminary reports for adjuvant treatment.  You don't get good statistics until it is out of clinical trials and approved for treatment.

        • January 15, 2013 at 8:16 pm
        Janner
        Participant

        You probably won't find any numbers on efficacy…. that's why it is in clinical trials comparing it to Interferon as an adjuvant treatment.  Interferon is the "gold standard" for stage III and the trials are trying to determine if ipi is more, less, or equally effective in an adjuvant setting.  You will find efficacy numbers for stage IV treatment, but maybe only some preliminary reports for adjuvant treatment.  You don't get good statistics until it is out of clinical trials and approved for treatment.

        • January 15, 2013 at 8:16 pm
        Janner
        Participant

        You probably won't find any numbers on efficacy…. that's why it is in clinical trials comparing it to Interferon as an adjuvant treatment.  Interferon is the "gold standard" for stage III and the trials are trying to determine if ipi is more, less, or equally effective in an adjuvant setting.  You will find efficacy numbers for stage IV treatment, but maybe only some preliminary reports for adjuvant treatment.  You don't get good statistics until it is out of clinical trials and approved for treatment.

        • January 16, 2013 at 3:34 pm
        buffcody
        Participant

        Tony,

        This is the best article I have seen combining the stats on ipi from a few trials.  Just came across it this morning.  I completed my fourth ipi infusion two weeks ago.  Pretty easy run for me at a standard dose of 3.0.

        http://www.uptodate.com/contents/advanced-melanoma-anti-ctla-4-antibodies-and-other-immune-checkpoint-strategies

        • January 16, 2013 at 3:34 pm
        buffcody
        Participant

        Tony,

        This is the best article I have seen combining the stats on ipi from a few trials.  Just came across it this morning.  I completed my fourth ipi infusion two weeks ago.  Pretty easy run for me at a standard dose of 3.0.

        http://www.uptodate.com/contents/advanced-melanoma-anti-ctla-4-antibodies-and-other-immune-checkpoint-strategies

        • January 16, 2013 at 3:34 pm
        buffcody
        Participant

        Tony,

        This is the best article I have seen combining the stats on ipi from a few trials.  Just came across it this morning.  I completed my fourth ipi infusion two weeks ago.  Pretty easy run for me at a standard dose of 3.0.

        http://www.uptodate.com/contents/advanced-melanoma-anti-ctla-4-antibodies-and-other-immune-checkpoint-strategies

      • January 15, 2013 at 2:54 pm
      kpcollins31
      Participant

      Tony – I went through the same decision process you are now going through and decided on "watch and wait" myself. Clearly, this is a personal decision. My rationale was that I did not want to significantly reduce my quality of life for a treatment that does not appear to offer any statistical benefit. My oncologist (melanoma speciailist) did not recommend interferon at the time I made the decision. He had suggested a potential clinical trial (vaccine) but it turns out I was not qualified for it.

      I am happy with my decision. I feel great and hit the gym several times a week. Stay strong.

      Kevin

      • January 15, 2013 at 9:38 pm
      JakeinNY
      Participant

      Hi Tony,

      I am a stage 3 survivor of 5+ years. I was supposed to be enrolled in a clinical trial but it was delayed so much that my doc felt that I was better off not doing it when it finally opened because I had gone 2+ years with no recurrence anywhere. The advice that you've seen here is good. Get to a place where they specialize in melanoma, if possible. Ask the docs about the statistics for your particular case (maybe the interferon is more effective in certain cases depending on how many lymph nodes were involved, where they were located, the age and sex of the patient, etc…..it can't hurt to see if this info exists) and then decide amongst the choices. As far as diet, don't be like many others and totally discount it's effect. It seems like the "hottest" diet for cancer patients right now is the ketogenic diet. Google Dr. Eugene Fine, RECHARGE trial, and see what you think. If you are going to do it, inform your doc. When it comes to cancer, sugar and carbohydrates appear to be the enemy. I'm hopeful that the current ketogenic diet trials going on right now show it to be helpful for a high percentage of cancer patients.

      Best wishes for a long life.

      Jake

        • January 17, 2013 at 8:08 am
        tony
        Participant

        I am taking diet very seriously – some of the changes I quite enjoy and some of the supplements not so much!

        From what I read about Ipilimumab it seems that it is not used as an adjuvent treatment. Does that sound right?

        This is a typical quote, 'Ipilimumab is a monoclonal antibody that targets CTLA-4, thus unleashing an immune reaction against the tumor. Treatment with ipilimumab significantly increases median overall survival in both previously untreated and previously treated patients with metastatic or unresectable melanoma.'

        Thanks again to all of you.

        • January 17, 2013 at 8:08 am
        tony
        Participant

        I am taking diet very seriously – some of the changes I quite enjoy and some of the supplements not so much!

        From what I read about Ipilimumab it seems that it is not used as an adjuvent treatment. Does that sound right?

        This is a typical quote, 'Ipilimumab is a monoclonal antibody that targets CTLA-4, thus unleashing an immune reaction against the tumor. Treatment with ipilimumab significantly increases median overall survival in both previously untreated and previously treated patients with metastatic or unresectable melanoma.'

        Thanks again to all of you.

        • January 17, 2013 at 1:29 pm
        Carole K
        Participant

        Hi Tony,

        After reading your post it brought me back to 1995 when i was originally diagnosed.  At that time INf was pretty much the only treatment available and my oncologist did not believe in it. In retrospect I am glas I diid not go through it. I was a regular on mpip for about 6 years and Tony what I saw I knew i would never do the treatment.  Schering Plough touted a 12% success rate and yet I was seeing recurrence after recurrence and sadly far too many people loosing their battle.  I wrote to Schering and to my state senator express my thoughts.  Noone ever replied.  I encouraged them to come to mpip and read what was going on.  A year later they came out with a new fidning  There was a mistake in the data.. instead of 12% the success was 1 to 2% success.  That explained what i saw happening here.  That being said, there are success stories and if you want, e mail me and I will get you in touch with someone who has had great success .with INF., 

        One thing I will tell you.. I preogressed to stage IV with lung and brain mets.. One thing my oncologist said when we discussed treatment and prognosis.  Carole, don't look at stats, noone can tell you where they came from or how old they are. You are an individual and different from everyone else. 

        I will be celebrating 12 years with NED IN TWO WEEKS  and I am loving life.  Tony, there are success stories.  Stay positive, make YOUR  own decision about treatment and move forward.  Do not look back.

        I did the wait and see route… 4 1/2 years later I was diagnosed with lung mets and ten months after that a brain met.  I am going strong.  I chose alternative treatment, in addition I had massages, reiki and started meditatng daily.  I also went on a macrobiotic diet for two years.  My choice of treatment isn't right for everyone, It is what I chose and fortunately it worked for me.  I am NOT AGAINST CONVENTIONAL MEDICINE.  I DO Believe there is room for different types of treatment with any illness.  It is our right to do what we feel is right  for us.  Good luck with your decision.  If I can be of any help please know I AM HERE FOR YOU.  It's a tough decision to make and I hope I did not confuse you,  Best to you always.

        Love and Light

        Carole

        • January 17, 2013 at 1:29 pm
        Carole K
        Participant

        Hi Tony,

        After reading your post it brought me back to 1995 when i was originally diagnosed.  At that time INf was pretty much the only treatment available and my oncologist did not believe in it. In retrospect I am glas I diid not go through it. I was a regular on mpip for about 6 years and Tony what I saw I knew i would never do the treatment.  Schering Plough touted a 12% success rate and yet I was seeing recurrence after recurrence and sadly far too many people loosing their battle.  I wrote to Schering and to my state senator express my thoughts.  Noone ever replied.  I encouraged them to come to mpip and read what was going on.  A year later they came out with a new fidning  There was a mistake in the data.. instead of 12% the success was 1 to 2% success.  That explained what i saw happening here.  That being said, there are success stories and if you want, e mail me and I will get you in touch with someone who has had great success .with INF., 

        One thing I will tell you.. I preogressed to stage IV with lung and brain mets.. One thing my oncologist said when we discussed treatment and prognosis.  Carole, don't look at stats, noone can tell you where they came from or how old they are. You are an individual and different from everyone else. 

        I will be celebrating 12 years with NED IN TWO WEEKS  and I am loving life.  Tony, there are success stories.  Stay positive, make YOUR  own decision about treatment and move forward.  Do not look back.

        I did the wait and see route… 4 1/2 years later I was diagnosed with lung mets and ten months after that a brain met.  I am going strong.  I chose alternative treatment, in addition I had massages, reiki and started meditatng daily.  I also went on a macrobiotic diet for two years.  My choice of treatment isn't right for everyone, It is what I chose and fortunately it worked for me.  I am NOT AGAINST CONVENTIONAL MEDICINE.  I DO Believe there is room for different types of treatment with any illness.  It is our right to do what we feel is right  for us.  Good luck with your decision.  If I can be of any help please know I AM HERE FOR YOU.  It's a tough decision to make and I hope I did not confuse you,  Best to you always.

        Love and Light

        Carole

        • January 17, 2013 at 1:40 pm
        tony
        Participant

        Hi Carole – fantastic news that you are 12 years NED from stage IV. Amazing. Congratulations! We all need news like that. It helps to keep us all positive. Thanks for sharing.

        I am really interested in natural remedies and therapies. I've radically altered my diet and started on wheatgrass, spirulina, graviola, green tea etc etc… I also had my first EFT session this week which really lifted my mood and made me feel more positive (even after initial sceptisism).

        Did you get through your brain and lung mets with alternative treatment?

        Thanks again,

        Tony

        • January 17, 2013 at 1:40 pm
        tony
        Participant

        Hi Carole – fantastic news that you are 12 years NED from stage IV. Amazing. Congratulations! We all need news like that. It helps to keep us all positive. Thanks for sharing.

        I am really interested in natural remedies and therapies. I've radically altered my diet and started on wheatgrass, spirulina, graviola, green tea etc etc… I also had my first EFT session this week which really lifted my mood and made me feel more positive (even after initial sceptisism).

        Did you get through your brain and lung mets with alternative treatment?

        Thanks again,

        Tony

        • January 17, 2013 at 2:49 pm
        Carole K
        Participant

        Hi Tony,

        I feel quite guilty not being on the board.  I got an incredible amount of support and am still friends with two people I met back in 1999 as their spouses fought the fight.  I know how important it is to have positive posts . 

        EFT ahh. I am an EFT Practicioner.  Tony, if you want to do other alternative and not have to pay a lot of money.. Go to your local health food store to see if anyone offers Reiki Circles.  They are free most of the time and not the same as a private session but works as well.

        I decided to do Gamma Knife foe the brain met but sadly my tumor burst and bled. I had surgery for it and was home in two days.  Rationalizing my odds for survival I did not want to do the treatments available in conventional medicine, I wanted to live for whatever time I had remaining,  I had just been through hell in a four year divorce and I wanted to live and have fun with my dis for whatever time I had left. 

        I did anthroposophical medicine for treatment after brain mets.  You can read my patnet under CaroleK.  Anthroposophical medicine was started in Berlin Germany by Rudolph Steiner..  All doctors who practice this modality are MD's  .,  My regime was giving myself injections twice a day three times a week for almost two years of Mistletoe, for the cancer, astrgalus for the immune system and formica for overall well being.  The only side effect I had was a welt near the injection site a few times which were itchy. 

        Tony, just have the conficence to know you will make the right decision for YOU.  Please know I am here for you, Hang in there,

        Love and Light

        Carole

        • January 17, 2013 at 2:49 pm
        Carole K
        Participant

        Hi Tony,

        I feel quite guilty not being on the board.  I got an incredible amount of support and am still friends with two people I met back in 1999 as their spouses fought the fight.  I know how important it is to have positive posts . 

        EFT ahh. I am an EFT Practicioner.  Tony, if you want to do other alternative and not have to pay a lot of money.. Go to your local health food store to see if anyone offers Reiki Circles.  They are free most of the time and not the same as a private session but works as well.

        I decided to do Gamma Knife foe the brain met but sadly my tumor burst and bled. I had surgery for it and was home in two days.  Rationalizing my odds for survival I did not want to do the treatments available in conventional medicine, I wanted to live for whatever time I had remaining,  I had just been through hell in a four year divorce and I wanted to live and have fun with my dis for whatever time I had left. 

        I did anthroposophical medicine for treatment after brain mets.  You can read my patnet under CaroleK.  Anthroposophical medicine was started in Berlin Germany by Rudolph Steiner..  All doctors who practice this modality are MD's  .,  My regime was giving myself injections twice a day three times a week for almost two years of Mistletoe, for the cancer, astrgalus for the immune system and formica for overall well being.  The only side effect I had was a welt near the injection site a few times which were itchy. 

        Tony, just have the conficence to know you will make the right decision for YOU.  Please know I am here for you, Hang in there,

        Love and Light

        Carole

        • January 17, 2013 at 2:49 pm
        Carole K
        Participant

        Hi Tony,

        I feel quite guilty not being on the board.  I got an incredible amount of support and am still friends with two people I met back in 1999 as their spouses fought the fight.  I know how important it is to have positive posts . 

        EFT ahh. I am an EFT Practicioner.  Tony, if you want to do other alternative and not have to pay a lot of money.. Go to your local health food store to see if anyone offers Reiki Circles.  They are free most of the time and not the same as a private session but works as well.

        I decided to do Gamma Knife foe the brain met but sadly my tumor burst and bled. I had surgery for it and was home in two days.  Rationalizing my odds for survival I did not want to do the treatments available in conventional medicine, I wanted to live for whatever time I had remaining,  I had just been through hell in a four year divorce and I wanted to live and have fun with my dis for whatever time I had left. 

        I did anthroposophical medicine for treatment after brain mets.  You can read my patnet under CaroleK.  Anthroposophical medicine was started in Berlin Germany by Rudolph Steiner..  All doctors who practice this modality are MD's  .,  My regime was giving myself injections twice a day three times a week for almost two years of Mistletoe, for the cancer, astrgalus for the immune system and formica for overall well being.  The only side effect I had was a welt near the injection site a few times which were itchy. 

        Tony, just have the conficence to know you will make the right decision for YOU.  Please know I am here for you, Hang in there,

        Love and Light

        Carole

        • January 17, 2013 at 1:40 pm
        tony
        Participant

        Hi Carole – fantastic news that you are 12 years NED from stage IV. Amazing. Congratulations! We all need news like that. It helps to keep us all positive. Thanks for sharing.

        I am really interested in natural remedies and therapies. I've radically altered my diet and started on wheatgrass, spirulina, graviola, green tea etc etc… I also had my first EFT session this week which really lifted my mood and made me feel more positive (even after initial sceptisism).

        Did you get through your brain and lung mets with alternative treatment?

        Thanks again,

        Tony

        • January 17, 2013 at 1:29 pm
        Carole K
        Participant

        Hi Tony,

        After reading your post it brought me back to 1995 when i was originally diagnosed.  At that time INf was pretty much the only treatment available and my oncologist did not believe in it. In retrospect I am glas I diid not go through it. I was a regular on mpip for about 6 years and Tony what I saw I knew i would never do the treatment.  Schering Plough touted a 12% success rate and yet I was seeing recurrence after recurrence and sadly far too many people loosing their battle.  I wrote to Schering and to my state senator express my thoughts.  Noone ever replied.  I encouraged them to come to mpip and read what was going on.  A year later they came out with a new fidning  There was a mistake in the data.. instead of 12% the success was 1 to 2% success.  That explained what i saw happening here.  That being said, there are success stories and if you want, e mail me and I will get you in touch with someone who has had great success .with INF., 

        One thing I will tell you.. I preogressed to stage IV with lung and brain mets.. One thing my oncologist said when we discussed treatment and prognosis.  Carole, don't look at stats, noone can tell you where they came from or how old they are. You are an individual and different from everyone else. 

        I will be celebrating 12 years with NED IN TWO WEEKS  and I am loving life.  Tony, there are success stories.  Stay positive, make YOUR  own decision about treatment and move forward.  Do not look back.

        I did the wait and see route… 4 1/2 years later I was diagnosed with lung mets and ten months after that a brain met.  I am going strong.  I chose alternative treatment, in addition I had massages, reiki and started meditatng daily.  I also went on a macrobiotic diet for two years.  My choice of treatment isn't right for everyone, It is what I chose and fortunately it worked for me.  I am NOT AGAINST CONVENTIONAL MEDICINE.  I DO Believe there is room for different types of treatment with any illness.  It is our right to do what we feel is right  for us.  Good luck with your decision.  If I can be of any help please know I AM HERE FOR YOU.  It's a tough decision to make and I hope I did not confuse you,  Best to you always.

        Love and Light

        Carole

        • January 17, 2013 at 8:08 am
        tony
        Participant

        I am taking diet very seriously – some of the changes I quite enjoy and some of the supplements not so much!

        From what I read about Ipilimumab it seems that it is not used as an adjuvent treatment. Does that sound right?

        This is a typical quote, 'Ipilimumab is a monoclonal antibody that targets CTLA-4, thus unleashing an immune reaction against the tumor. Treatment with ipilimumab significantly increases median overall survival in both previously untreated and previously treated patients with metastatic or unresectable melanoma.'

        Thanks again to all of you.

      • January 15, 2013 at 9:38 pm
      JakeinNY
      Participant

      Hi Tony,

      I am a stage 3 survivor of 5+ years. I was supposed to be enrolled in a clinical trial but it was delayed so much that my doc felt that I was better off not doing it when it finally opened because I had gone 2+ years with no recurrence anywhere. The advice that you've seen here is good. Get to a place where they specialize in melanoma, if possible. Ask the docs about the statistics for your particular case (maybe the interferon is more effective in certain cases depending on how many lymph nodes were involved, where they were located, the age and sex of the patient, etc…..it can't hurt to see if this info exists) and then decide amongst the choices. As far as diet, don't be like many others and totally discount it's effect. It seems like the "hottest" diet for cancer patients right now is the ketogenic diet. Google Dr. Eugene Fine, RECHARGE trial, and see what you think. If you are going to do it, inform your doc. When it comes to cancer, sugar and carbohydrates appear to be the enemy. I'm hopeful that the current ketogenic diet trials going on right now show it to be helpful for a high percentage of cancer patients.

      Best wishes for a long life.

      Jake

      • January 15, 2013 at 9:38 pm
      JakeinNY
      Participant

      Hi Tony,

      I am a stage 3 survivor of 5+ years. I was supposed to be enrolled in a clinical trial but it was delayed so much that my doc felt that I was better off not doing it when it finally opened because I had gone 2+ years with no recurrence anywhere. The advice that you've seen here is good. Get to a place where they specialize in melanoma, if possible. Ask the docs about the statistics for your particular case (maybe the interferon is more effective in certain cases depending on how many lymph nodes were involved, where they were located, the age and sex of the patient, etc…..it can't hurt to see if this info exists) and then decide amongst the choices. As far as diet, don't be like many others and totally discount it's effect. It seems like the "hottest" diet for cancer patients right now is the ketogenic diet. Google Dr. Eugene Fine, RECHARGE trial, and see what you think. If you are going to do it, inform your doc. When it comes to cancer, sugar and carbohydrates appear to be the enemy. I'm hopeful that the current ketogenic diet trials going on right now show it to be helpful for a high percentage of cancer patients.

      Best wishes for a long life.

      Jake

      • January 17, 2013 at 7:27 pm
      Charlie S
      Participant

      Curious dichotomy  about statistics here; nobody wants to be one but almost every treatment decision post reflects a position based upon them.

      As Jerry has in his postscript "I'm me, not a statistic".

      Statistics are a representation of what happened to a certain group of people in the past and are in no way a reflection of what will happen to any one individual in the future.  Nothing more.

      So, in part, when having to ride a fast learning curve following diagnosis without falling off, it is important to balance the "numbers" with the realities of melanoma .  

      It is true that any particular treatment that works for one  will not and often does not work for another.  It is true that not all people diagnosed with melanoma will die as a direct result.  It is true that not all people will progress..  It is true that many people do,and are having durable remissions from any particular or variety of treatment approaches.  It is also true that clinical trials are scientific experiiments that use human beings as test subjects.  

      It is also true that none of us are getting out of here alive because life is finite,   Living is not.

      What really stinks is that  within the entire constellation of treatment approaches for advanced melanoma, only a very small percentage of people respond.  I'm being generous here by saying that probably the best response rate from anything is between 15-20%.

      From all the above you may think me cynical , pessismistic , fatalistic and having an overall jaundiced outlook.  Far from it.

      Statistically I was supposed  to be dead within six months twenty five and a half years ago  Statiscally, I was supposed to be dead again in 1996, 1998, 2000 and so on through six recurrences and 16 years of being Stage IV.  Yep, lots of surgeries,  Yep, did Interferon, Yep participated in clinical trials, yep did IL-2 and yep to a whole medicine bag of other things.  And yep, most of the time when deciding what to do next I felt like a one legged man in a butt kicking contest.

      For me it has been more of a personal metric system rather than a statistical one.  I know all the numbers stink and a melanoma diagnosis stinks, but as a risk taker by nature thrown unwanted into a risky situation, I took action, made my decisions, never looked back, always adjusted and adapted……………….all with the mental resolve.  It's what I could get my head around and LIVE with in making my decisions.

      My point is, take everything in, balance it out in your mind as a whole and make a decision based upon what you can LIVE with, then get on with the business of living.  

      Though not a regret, had I known then what I know now about Interferon, doing the one month hi-dose alone would certainly have been attractive.

      Undeadly yours,

      Charlie S

       

       

       

      • January 17, 2013 at 7:27 pm
      Charlie S
      Participant

      Curious dichotomy  about statistics here; nobody wants to be one but almost every treatment decision post reflects a position based upon them.

      As Jerry has in his postscript "I'm me, not a statistic".

      Statistics are a representation of what happened to a certain group of people in the past and are in no way a reflection of what will happen to any one individual in the future.  Nothing more.

      So, in part, when having to ride a fast learning curve following diagnosis without falling off, it is important to balance the "numbers" with the realities of melanoma .  

      It is true that any particular treatment that works for one  will not and often does not work for another.  It is true that not all people diagnosed with melanoma will die as a direct result.  It is true that not all people will progress..  It is true that many people do,and are having durable remissions from any particular or variety of treatment approaches.  It is also true that clinical trials are scientific experiiments that use human beings as test subjects.  

      It is also true that none of us are getting out of here alive because life is finite,   Living is not.

      What really stinks is that  within the entire constellation of treatment approaches for advanced melanoma, only a very small percentage of people respond.  I'm being generous here by saying that probably the best response rate from anything is between 15-20%.

      From all the above you may think me cynical , pessismistic , fatalistic and having an overall jaundiced outlook.  Far from it.

      Statistically I was supposed  to be dead within six months twenty five and a half years ago  Statiscally, I was supposed to be dead again in 1996, 1998, 2000 and so on through six recurrences and 16 years of being Stage IV.  Yep, lots of surgeries,  Yep, did Interferon, Yep participated in clinical trials, yep did IL-2 and yep to a whole medicine bag of other things.  And yep, most of the time when deciding what to do next I felt like a one legged man in a butt kicking contest.

      For me it has been more of a personal metric system rather than a statistical one.  I know all the numbers stink and a melanoma diagnosis stinks, but as a risk taker by nature thrown unwanted into a risky situation, I took action, made my decisions, never looked back, always adjusted and adapted……………….all with the mental resolve.  It's what I could get my head around and LIVE with in making my decisions.

      My point is, take everything in, balance it out in your mind as a whole and make a decision based upon what you can LIVE with, then get on with the business of living.  

      Though not a regret, had I known then what I know now about Interferon, doing the one month hi-dose alone would certainly have been attractive.

      Undeadly yours,

      Charlie S

       

       

       

      • January 17, 2013 at 7:27 pm
      Charlie S
      Participant

      Curious dichotomy  about statistics here; nobody wants to be one but almost every treatment decision post reflects a position based upon them.

      As Jerry has in his postscript "I'm me, not a statistic".

      Statistics are a representation of what happened to a certain group of people in the past and are in no way a reflection of what will happen to any one individual in the future.  Nothing more.

      So, in part, when having to ride a fast learning curve following diagnosis without falling off, it is important to balance the "numbers" with the realities of melanoma .  

      It is true that any particular treatment that works for one  will not and often does not work for another.  It is true that not all people diagnosed with melanoma will die as a direct result.  It is true that not all people will progress..  It is true that many people do,and are having durable remissions from any particular or variety of treatment approaches.  It is also true that clinical trials are scientific experiiments that use human beings as test subjects.  

      It is also true that none of us are getting out of here alive because life is finite,   Living is not.

      What really stinks is that  within the entire constellation of treatment approaches for advanced melanoma, only a very small percentage of people respond.  I'm being generous here by saying that probably the best response rate from anything is between 15-20%.

      From all the above you may think me cynical , pessismistic , fatalistic and having an overall jaundiced outlook.  Far from it.

      Statistically I was supposed  to be dead within six months twenty five and a half years ago  Statiscally, I was supposed to be dead again in 1996, 1998, 2000 and so on through six recurrences and 16 years of being Stage IV.  Yep, lots of surgeries,  Yep, did Interferon, Yep participated in clinical trials, yep did IL-2 and yep to a whole medicine bag of other things.  And yep, most of the time when deciding what to do next I felt like a one legged man in a butt kicking contest.

      For me it has been more of a personal metric system rather than a statistical one.  I know all the numbers stink and a melanoma diagnosis stinks, but as a risk taker by nature thrown unwanted into a risky situation, I took action, made my decisions, never looked back, always adjusted and adapted……………….all with the mental resolve.  It's what I could get my head around and LIVE with in making my decisions.

      My point is, take everything in, balance it out in your mind as a whole and make a decision based upon what you can LIVE with, then get on with the business of living.  

      Though not a regret, had I known then what I know now about Interferon, doing the one month hi-dose alone would certainly have been attractive.

      Undeadly yours,

      Charlie S

       

       

       

      • January 19, 2013 at 1:58 am
      Colleen66
      Participant

      Hi Tony,

      I am 3b and had 3 options. Standard interferon, wait and see and trial of interferon and ipi.  I choose the trial.  I was randomized to the interferon arm.  I had 3 weeks of the high dose and Doc stopped the treatment.  I had an incapacitating migraine for three weeks, severe light and sound sensitivity, started having changes in my eye vision and pigment changes and inflammation.  Got sick with a cold/cough I couldn't kick.  I have a new spot in my lung, scanning again in 3 months.  Brain scan next week. 

      I was basically in bed for the entire time.  I laid in the dark with no lights.  I couldn't eat.  I felt it would kill me.  They tried a beta blocker for the migraine and it sent my heart rate to 40. Freaked a few people out.  Doc said that I had no quality of life and that proper diet and aerobic exercise would equate to the interferon treatments since the success rates are so low anyway.  

      So will just continue from this point. I'm haveing the BRAF testing done.  Ldh levels are still high and so are alt ast levels.  

      Make your decision and dont look back.  It will be the right one for you

       

      Best of luck in whatever you decide.

       

      Colleen

      • January 19, 2013 at 1:58 am
      Colleen66
      Participant

      Hi Tony,

      I am 3b and had 3 options. Standard interferon, wait and see and trial of interferon and ipi.  I choose the trial.  I was randomized to the interferon arm.  I had 3 weeks of the high dose and Doc stopped the treatment.  I had an incapacitating migraine for three weeks, severe light and sound sensitivity, started having changes in my eye vision and pigment changes and inflammation.  Got sick with a cold/cough I couldn't kick.  I have a new spot in my lung, scanning again in 3 months.  Brain scan next week. 

      I was basically in bed for the entire time.  I laid in the dark with no lights.  I couldn't eat.  I felt it would kill me.  They tried a beta blocker for the migraine and it sent my heart rate to 40. Freaked a few people out.  Doc said that I had no quality of life and that proper diet and aerobic exercise would equate to the interferon treatments since the success rates are so low anyway.  

      So will just continue from this point. I'm haveing the BRAF testing done.  Ldh levels are still high and so are alt ast levels.  

      Make your decision and dont look back.  It will be the right one for you

       

      Best of luck in whatever you decide.

       

      Colleen

      • January 19, 2013 at 1:58 am
      Colleen66
      Participant

      Hi Tony,

      I am 3b and had 3 options. Standard interferon, wait and see and trial of interferon and ipi.  I choose the trial.  I was randomized to the interferon arm.  I had 3 weeks of the high dose and Doc stopped the treatment.  I had an incapacitating migraine for three weeks, severe light and sound sensitivity, started having changes in my eye vision and pigment changes and inflammation.  Got sick with a cold/cough I couldn't kick.  I have a new spot in my lung, scanning again in 3 months.  Brain scan next week. 

      I was basically in bed for the entire time.  I laid in the dark with no lights.  I couldn't eat.  I felt it would kill me.  They tried a beta blocker for the migraine and it sent my heart rate to 40. Freaked a few people out.  Doc said that I had no quality of life and that proper diet and aerobic exercise would equate to the interferon treatments since the success rates are so low anyway.  

      So will just continue from this point. I'm haveing the BRAF testing done.  Ldh levels are still high and so are alt ast levels.  

      Make your decision and dont look back.  It will be the right one for you

       

      Best of luck in whatever you decide.

       

      Colleen

      • January 23, 2013 at 11:03 pm
      GordsMate
      Participant

      I am also stage iiia. I had a CLND of my left axilla late November. Now I'm struggling with the decision of whether to take interferon or not.  I had hoped to participate in a clinical trial that is looking at Vemurafenib (Zelboraf) in patients with resected BRAF mutant melanoma. (Clincal trial NCT01667419). Unfortunately the trial is not yet open at the cancer centre where I'm being treated but I see that patients are being recruited in other geographies/locations. At this point I do not know if I even have the BRAF mutation – I understood that my tissue would be tested as part of the trial. One has to start within 70 days of their last surgery and I am almost out of time.

      So I am back to interferon or "watch and wait". I had micropscopic disease in 1 sentinel lymph node. In total 30 were removed and tested – 6 in the SLN biopsy and 24 in the CLND.

      I am leaning towards the "watch and wait" but am toying with the idea of 1 month high dosage interferon. Has anyone read/been told anything about the effectiveness of this course ?

      Thank you

      • January 23, 2013 at 11:03 pm
      GordsMate
      Participant

      I am also stage iiia. I had a CLND of my left axilla late November. Now I'm struggling with the decision of whether to take interferon or not.  I had hoped to participate in a clinical trial that is looking at Vemurafenib (Zelboraf) in patients with resected BRAF mutant melanoma. (Clincal trial NCT01667419). Unfortunately the trial is not yet open at the cancer centre where I'm being treated but I see that patients are being recruited in other geographies/locations. At this point I do not know if I even have the BRAF mutation – I understood that my tissue would be tested as part of the trial. One has to start within 70 days of their last surgery and I am almost out of time.

      So I am back to interferon or "watch and wait". I had micropscopic disease in 1 sentinel lymph node. In total 30 were removed and tested – 6 in the SLN biopsy and 24 in the CLND.

      I am leaning towards the "watch and wait" but am toying with the idea of 1 month high dosage interferon. Has anyone read/been told anything about the effectiveness of this course ?

      Thank you

      • January 23, 2013 at 11:03 pm
      GordsMate
      Participant

      I am also stage iiia. I had a CLND of my left axilla late November. Now I'm struggling with the decision of whether to take interferon or not.  I had hoped to participate in a clinical trial that is looking at Vemurafenib (Zelboraf) in patients with resected BRAF mutant melanoma. (Clincal trial NCT01667419). Unfortunately the trial is not yet open at the cancer centre where I'm being treated but I see that patients are being recruited in other geographies/locations. At this point I do not know if I even have the BRAF mutation – I understood that my tissue would be tested as part of the trial. One has to start within 70 days of their last surgery and I am almost out of time.

      So I am back to interferon or "watch and wait". I had micropscopic disease in 1 sentinel lymph node. In total 30 were removed and tested – 6 in the SLN biopsy and 24 in the CLND.

      I am leaning towards the "watch and wait" but am toying with the idea of 1 month high dosage interferon. Has anyone read/been told anything about the effectiveness of this course ?

      Thank you

      • January 24, 2013 at 5:43 pm
      GordsMate
      Participant

      Thank you Tony for your thoughtful and helpful response to my query. You certainly are doing all the research you can before you make your decision.

      I am still struggling with my decision – but the deadline is looming. At the outset, when the therapy was described by my oncologist, I could not justfiy the cost vs the benefits. I still have trouble with that. Only recently did I read that the response is more positive for microscopic disease in 1 sentinel lymph node – my scenario – which makes me think "ok maybe I could tolerate a month of this to derive some benefit". Meanwhile the clock is ticking and it is more than 56 days (the Greek study parameter) since my CLND.  My oncologist doesn't seem concerned about my starting 70 days out. She will not make a recommendation for me. Her approach is to only tell me what is available and let me make an informed decision.

      I will look at the lifestyle and diet changes. It seems like they could be almost as effective and would put me in a better health position to deal with any recurrence.

      Diane

      • January 24, 2013 at 5:43 pm
      GordsMate
      Participant

      Thank you Tony for your thoughtful and helpful response to my query. You certainly are doing all the research you can before you make your decision.

      I am still struggling with my decision – but the deadline is looming. At the outset, when the therapy was described by my oncologist, I could not justfiy the cost vs the benefits. I still have trouble with that. Only recently did I read that the response is more positive for microscopic disease in 1 sentinel lymph node – my scenario – which makes me think "ok maybe I could tolerate a month of this to derive some benefit". Meanwhile the clock is ticking and it is more than 56 days (the Greek study parameter) since my CLND.  My oncologist doesn't seem concerned about my starting 70 days out. She will not make a recommendation for me. Her approach is to only tell me what is available and let me make an informed decision.

      I will look at the lifestyle and diet changes. It seems like they could be almost as effective and would put me in a better health position to deal with any recurrence.

      Diane

        • February 27, 2013 at 9:44 am
        tony
        Participant

        Hi,

        Its taken a while but I have finally come to a decision which I thought I would post here in case its helpful for anyone in the same boat. My Onc in Mumbai does not recommend Interferon which is the way I was leaning anyway.

        We sought a second opinion from a Consultant at Mount Vernon in the UK. He said it might be worth considering the adjuvent Dabrafenib / Trametinib combi trial… http://clinicaltrials.gov/ct2/show/NCT01682083?term=combi-ad&rank=1

        While researching trials I also found the adjuvent Zelboraf trial… http://clinicaltrials.gov/ct2/show/NCT01667419?term=NCT01667419&rank=1

        As participation in both of these would have involved leaving my family and relocating to the UK for at least 12 months, and both are double blind placebo controlled, I decided against it. Also worth considering is that among the numerous side effects of both is Squamous Cell Skin Cancer!! I read somewhere aprox 1 in 4 suffer this side effect. It seems a little bizare to offer these drugs as an adjuvent therapy. In essence I would have been taking a Skin cancer therapy when I have no evidence of skin cancer that could give me skin cancer??! I'm not knocking these new breakthrough drugs as I'm sure that, if and when I progress to stage IV, I will be glad to take my chances with these side effects.

        For those that are interested in Alternative therapies, as well as orthadox medicine, here are a few links you might find useful…

        Searchable reference section… http://www.yestolife.org.uk/

        Free feature length film… http://canceriscurablenow.tv

        Good read… http://www.amazon.co.uk/Beating-Cancer-Nutrition-Medically-Treated-Patients/dp/096383729X/ref=sr_1_1?s=books&ie=UTF8&qid=1361440758&sr=1-1

        A patients research… http://www.self-helpcancer.org/

        Supposedly the best vitamins – decide for yourself… http://www.xtend-life.com/

        Tested supplement… http://www.salvestrol.ca/index.asp

        Vital supplement… http://www.highernature.co.uk/ShowProductFamily.aspx?ProductFamilyID=258

        All the best, Tony

        • February 27, 2013 at 9:44 am
        tony
        Participant

        Hi,

        Its taken a while but I have finally come to a decision which I thought I would post here in case its helpful for anyone in the same boat. My Onc in Mumbai does not recommend Interferon which is the way I was leaning anyway.

        We sought a second opinion from a Consultant at Mount Vernon in the UK. He said it might be worth considering the adjuvent Dabrafenib / Trametinib combi trial… http://clinicaltrials.gov/ct2/show/NCT01682083?term=combi-ad&rank=1

        While researching trials I also found the adjuvent Zelboraf trial… http://clinicaltrials.gov/ct2/show/NCT01667419?term=NCT01667419&rank=1

        As participation in both of these would have involved leaving my family and relocating to the UK for at least 12 months, and both are double blind placebo controlled, I decided against it. Also worth considering is that among the numerous side effects of both is Squamous Cell Skin Cancer!! I read somewhere aprox 1 in 4 suffer this side effect. It seems a little bizare to offer these drugs as an adjuvent therapy. In essence I would have been taking a Skin cancer therapy when I have no evidence of skin cancer that could give me skin cancer??! I'm not knocking these new breakthrough drugs as I'm sure that, if and when I progress to stage IV, I will be glad to take my chances with these side effects.

        For those that are interested in Alternative therapies, as well as orthadox medicine, here are a few links you might find useful…

        Searchable reference section… http://www.yestolife.org.uk/

        Free feature length film… http://canceriscurablenow.tv

        Good read… http://www.amazon.co.uk/Beating-Cancer-Nutrition-Medically-Treated-Patients/dp/096383729X/ref=sr_1_1?s=books&ie=UTF8&qid=1361440758&sr=1-1

        A patients research… http://www.self-helpcancer.org/

        Supposedly the best vitamins – decide for yourself… http://www.xtend-life.com/

        Tested supplement… http://www.salvestrol.ca/index.asp

        Vital supplement… http://www.highernature.co.uk/ShowProductFamily.aspx?ProductFamilyID=258

        All the best, Tony

        • February 27, 2013 at 1:10 pm
        POW
        Participant

        Hi, Tony-

        As we say in the States, "You've come a long way, Baby!" You have really done your homework and your thinking seems sound to me. I think it is also smart to make sure you practice good diet and nutrition, especially things that boost the immune system.  It's too bad that there is no one thing that everyone points to and says, "Yes! This is exactly the best thing to do!" but there is no such treatment or approach. As with every decision about melanoma, all you can do is make the  best decision you can with the information you have at the time and never allow yourself to second-guess yourself later. You did great. You made your decision. Now put it behind you and enjoy your life.

        • February 27, 2013 at 1:10 pm
        POW
        Participant

        Hi, Tony-

        As we say in the States, "You've come a long way, Baby!" You have really done your homework and your thinking seems sound to me. I think it is also smart to make sure you practice good diet and nutrition, especially things that boost the immune system.  It's too bad that there is no one thing that everyone points to and says, "Yes! This is exactly the best thing to do!" but there is no such treatment or approach. As with every decision about melanoma, all you can do is make the  best decision you can with the information you have at the time and never allow yourself to second-guess yourself later. You did great. You made your decision. Now put it behind you and enjoy your life.

        • February 27, 2013 at 1:10 pm
        POW
        Participant

        Hi, Tony-

        As we say in the States, "You've come a long way, Baby!" You have really done your homework and your thinking seems sound to me. I think it is also smart to make sure you practice good diet and nutrition, especially things that boost the immune system.  It's too bad that there is no one thing that everyone points to and says, "Yes! This is exactly the best thing to do!" but there is no such treatment or approach. As with every decision about melanoma, all you can do is make the  best decision you can with the information you have at the time and never allow yourself to second-guess yourself later. You did great. You made your decision. Now put it behind you and enjoy your life.

        • February 27, 2013 at 9:44 am
        tony
        Participant

        Hi,

        Its taken a while but I have finally come to a decision which I thought I would post here in case its helpful for anyone in the same boat. My Onc in Mumbai does not recommend Interferon which is the way I was leaning anyway.

        We sought a second opinion from a Consultant at Mount Vernon in the UK. He said it might be worth considering the adjuvent Dabrafenib / Trametinib combi trial… http://clinicaltrials.gov/ct2/show/NCT01682083?term=combi-ad&rank=1

        While researching trials I also found the adjuvent Zelboraf trial… http://clinicaltrials.gov/ct2/show/NCT01667419?term=NCT01667419&rank=1

        As participation in both of these would have involved leaving my family and relocating to the UK for at least 12 months, and both are double blind placebo controlled, I decided against it. Also worth considering is that among the numerous side effects of both is Squamous Cell Skin Cancer!! I read somewhere aprox 1 in 4 suffer this side effect. It seems a little bizare to offer these drugs as an adjuvent therapy. In essence I would have been taking a Skin cancer therapy when I have no evidence of skin cancer that could give me skin cancer??! I'm not knocking these new breakthrough drugs as I'm sure that, if and when I progress to stage IV, I will be glad to take my chances with these side effects.

        For those that are interested in Alternative therapies, as well as orthadox medicine, here are a few links you might find useful…

        Searchable reference section… http://www.yestolife.org.uk/

        Free feature length film… http://canceriscurablenow.tv

        Good read… http://www.amazon.co.uk/Beating-Cancer-Nutrition-Medically-Treated-Patients/dp/096383729X/ref=sr_1_1?s=books&ie=UTF8&qid=1361440758&sr=1-1

        A patients research… http://www.self-helpcancer.org/

        Supposedly the best vitamins – decide for yourself… http://www.xtend-life.com/

        Tested supplement… http://www.salvestrol.ca/index.asp

        Vital supplement… http://www.highernature.co.uk/ShowProductFamily.aspx?ProductFamilyID=258

        All the best, Tony

      • January 24, 2013 at 5:43 pm
      GordsMate
      Participant

      Thank you Tony for your thoughtful and helpful response to my query. You certainly are doing all the research you can before you make your decision.

      I am still struggling with my decision – but the deadline is looming. At the outset, when the therapy was described by my oncologist, I could not justfiy the cost vs the benefits. I still have trouble with that. Only recently did I read that the response is more positive for microscopic disease in 1 sentinel lymph node – my scenario – which makes me think "ok maybe I could tolerate a month of this to derive some benefit". Meanwhile the clock is ticking and it is more than 56 days (the Greek study parameter) since my CLND.  My oncologist doesn't seem concerned about my starting 70 days out. She will not make a recommendation for me. Her approach is to only tell me what is available and let me make an informed decision.

      I will look at the lifestyle and diet changes. It seems like they could be almost as effective and would put me in a better health position to deal with any recurrence.

      Diane

      • February 27, 2013 at 1:30 pm
      JC
      Participant

      I tell ya, there are a lot of good life lessons to be learned from this site and from what people post.  Not just for melanoma patients, but for everyone.  Thanks to everyone.

      • February 27, 2013 at 1:30 pm
      JC
      Participant

      I tell ya, there are a lot of good life lessons to be learned from this site and from what people post.  Not just for melanoma patients, but for everyone.  Thanks to everyone.

      • February 27, 2013 at 1:30 pm
      JC
      Participant

      I tell ya, there are a lot of good life lessons to be learned from this site and from what people post.  Not just for melanoma patients, but for everyone.  Thanks to everyone.

      • June 1, 2013 at 12:46 am
      jdeangelo
      Participant

      Tony,

      Thank you so much for your post!! My daughter has been recently diagnosed with stage 3 melanoma, with 11 of 31 lymph nodes being positive. Although she initially mentioned the ketogenic diet, has passed it by since her oncologist did not recommend this as a viable action to take, mentioning instead an intense vitamin C therapy. I keep pressing to take control of whatever portion you can, leave the chemotherapy to the Doctors, but leave no stone unturned in what you are willing to do to get well. Only a Mother or parent could possibly understand. If ketogenics only increases your chance of survival by 1% take that 1%  and add whatever else you can find. When you are done perhaps you will have changed the margin enough that you are in the winning standards. If green tea is touted as a possible curative for cancer drink green tea, what can it hurt. If Mistletoe or shitake mushrooms have a curative effect on cancer per the NCI but no significant trials can give a definative % to their effectiveness, what do you loose by trying it? It would be so interesting to find Doctors that would actually take the time to put this in their patients history & try to do statistics base on this, in addition to the clinical trials. 

      I have been trying to find support groups, helpful for us at this stage of my daughters cancer. Drug expectations, diet therapies & clinics used specifically geared towards melanoma, but keep finding the same websites with the same outdated data. Please continue to post about your progress, this is the only way we have to stay on top of treatments, drugs and alternative options that could be the 1% that puts you on the winning edge If your oncologist can not tell you that it will interfere in your treatment than why should you not make these changes in your dirt?

      Am still trying to find the best place to opinion on my daughters total treatment, at this time she is being treated at the Kimmel Cancer Treatment in Philadelphia. Would so appreciate any feedback on the ketogenic diet, 11 positive lymph nodes or the center.

      Thank you

      Judy

      • June 1, 2013 at 12:46 am
      jdeangelo
      Participant

      Tony,

      Thank you so much for your post!! My daughter has been recently diagnosed with stage 3 melanoma, with 11 of 31 lymph nodes being positive. Although she initially mentioned the ketogenic diet, has passed it by since her oncologist did not recommend this as a viable action to take, mentioning instead an intense vitamin C therapy. I keep pressing to take control of whatever portion you can, leave the chemotherapy to the Doctors, but leave no stone unturned in what you are willing to do to get well. Only a Mother or parent could possibly understand. If ketogenics only increases your chance of survival by 1% take that 1%  and add whatever else you can find. When you are done perhaps you will have changed the margin enough that you are in the winning standards. If green tea is touted as a possible curative for cancer drink green tea, what can it hurt. If Mistletoe or shitake mushrooms have a curative effect on cancer per the NCI but no significant trials can give a definative % to their effectiveness, what do you loose by trying it? It would be so interesting to find Doctors that would actually take the time to put this in their patients history & try to do statistics base on this, in addition to the clinical trials. 

      I have been trying to find support groups, helpful for us at this stage of my daughters cancer. Drug expectations, diet therapies & clinics used specifically geared towards melanoma, but keep finding the same websites with the same outdated data. Please continue to post about your progress, this is the only way we have to stay on top of treatments, drugs and alternative options that could be the 1% that puts you on the winning edge If your oncologist can not tell you that it will interfere in your treatment than why should you not make these changes in your dirt?

      Am still trying to find the best place to opinion on my daughters total treatment, at this time she is being treated at the Kimmel Cancer Treatment in Philadelphia. Would so appreciate any feedback on the ketogenic diet, 11 positive lymph nodes or the center.

      Thank you

      Judy

      • June 1, 2013 at 12:46 am
      jdeangelo
      Participant

      Tony,

      Thank you so much for your post!! My daughter has been recently diagnosed with stage 3 melanoma, with 11 of 31 lymph nodes being positive. Although she initially mentioned the ketogenic diet, has passed it by since her oncologist did not recommend this as a viable action to take, mentioning instead an intense vitamin C therapy. I keep pressing to take control of whatever portion you can, leave the chemotherapy to the Doctors, but leave no stone unturned in what you are willing to do to get well. Only a Mother or parent could possibly understand. If ketogenics only increases your chance of survival by 1% take that 1%  and add whatever else you can find. When you are done perhaps you will have changed the margin enough that you are in the winning standards. If green tea is touted as a possible curative for cancer drink green tea, what can it hurt. If Mistletoe or shitake mushrooms have a curative effect on cancer per the NCI but no significant trials can give a definative % to their effectiveness, what do you loose by trying it? It would be so interesting to find Doctors that would actually take the time to put this in their patients history & try to do statistics base on this, in addition to the clinical trials. 

      I have been trying to find support groups, helpful for us at this stage of my daughters cancer. Drug expectations, diet therapies & clinics used specifically geared towards melanoma, but keep finding the same websites with the same outdated data. Please continue to post about your progress, this is the only way we have to stay on top of treatments, drugs and alternative options that could be the 1% that puts you on the winning edge If your oncologist can not tell you that it will interfere in your treatment than why should you not make these changes in your dirt?

      Am still trying to find the best place to opinion on my daughters total treatment, at this time she is being treated at the Kimmel Cancer Treatment in Philadelphia. Would so appreciate any feedback on the ketogenic diet, 11 positive lymph nodes or the center.

      Thank you

      Judy

        • June 1, 2013 at 8:00 am
        tony
        Participant

        Hi Judy,

        I did a lot of research on various alternative therapies and nutrition. It quickly became aparent that it would not be possible to take every supplement and every berry, mushroom, and herbal extract touted as potentially helpful. In the end I visited a Naturpath who has spent 25 years testing supplements and extracts for their potential as cancer therapies. He put together an all natural protocol for me to follow. This involves approx 30 supplements and diet on a daily basis for 6 months. As both my oncologists (one in UK and one in India) both say that chemo is not an option (at my stage as an adjuvent therapy) and Interferon is no longer considered useful either, this is pretty much the only option apart from clinical trials.

        There are clinical trials looking at various approved stage IV drugs as an adjuvent therapies for stage III resected patients. I think I posted links above. If not let me know and I'll post them again. Of course there is no way of knowing if these drugs will have any benefit to your daughter and there is every possibility that they will make her very sick for a long time due to the toxicity. This is one of the reasons that I opted for the natural protocol instead. The other reason was that I would have had to return to the UK to participate and leave my family behind in India. If I had been resident in the UK maybe my decision might have been different?

        I could email you the natural protocol if you like. I'm not sure if you can send me a personal mail on this forum – if you can please get in contact if you'd like a copy. However, I would recommend that you find a doctor or qualified practitioner who could make your daughter a similar protocol but tailored to her nutritional and immune deficiencies and physiology. Patrick Quillan lists such doctors in the US at the back of his excellent book "Beating Cancer With Nutrition".

        The most important thing is to stay positive and beleive that you are in control. Tell your daughter, "Do not let it define you".

        Good luck and stay strong.

        Tony

        • June 1, 2013 at 8:00 am
        tony
        Participant

        Hi Judy,

        I did a lot of research on various alternative therapies and nutrition. It quickly became aparent that it would not be possible to take every supplement and every berry, mushroom, and herbal extract touted as potentially helpful. In the end I visited a Naturpath who has spent 25 years testing supplements and extracts for their potential as cancer therapies. He put together an all natural protocol for me to follow. This involves approx 30 supplements and diet on a daily basis for 6 months. As both my oncologists (one in UK and one in India) both say that chemo is not an option (at my stage as an adjuvent therapy) and Interferon is no longer considered useful either, this is pretty much the only option apart from clinical trials.

        There are clinical trials looking at various approved stage IV drugs as an adjuvent therapies for stage III resected patients. I think I posted links above. If not let me know and I'll post them again. Of course there is no way of knowing if these drugs will have any benefit to your daughter and there is every possibility that they will make her very sick for a long time due to the toxicity. This is one of the reasons that I opted for the natural protocol instead. The other reason was that I would have had to return to the UK to participate and leave my family behind in India. If I had been resident in the UK maybe my decision might have been different?

        I could email you the natural protocol if you like. I'm not sure if you can send me a personal mail on this forum – if you can please get in contact if you'd like a copy. However, I would recommend that you find a doctor or qualified practitioner who could make your daughter a similar protocol but tailored to her nutritional and immune deficiencies and physiology. Patrick Quillan lists such doctors in the US at the back of his excellent book "Beating Cancer With Nutrition".

        The most important thing is to stay positive and beleive that you are in control. Tell your daughter, "Do not let it define you".

        Good luck and stay strong.

        Tony

        • June 1, 2013 at 8:00 am
        tony
        Participant

        Hi Judy,

        I did a lot of research on various alternative therapies and nutrition. It quickly became aparent that it would not be possible to take every supplement and every berry, mushroom, and herbal extract touted as potentially helpful. In the end I visited a Naturpath who has spent 25 years testing supplements and extracts for their potential as cancer therapies. He put together an all natural protocol for me to follow. This involves approx 30 supplements and diet on a daily basis for 6 months. As both my oncologists (one in UK and one in India) both say that chemo is not an option (at my stage as an adjuvent therapy) and Interferon is no longer considered useful either, this is pretty much the only option apart from clinical trials.

        There are clinical trials looking at various approved stage IV drugs as an adjuvent therapies for stage III resected patients. I think I posted links above. If not let me know and I'll post them again. Of course there is no way of knowing if these drugs will have any benefit to your daughter and there is every possibility that they will make her very sick for a long time due to the toxicity. This is one of the reasons that I opted for the natural protocol instead. The other reason was that I would have had to return to the UK to participate and leave my family behind in India. If I had been resident in the UK maybe my decision might have been different?

        I could email you the natural protocol if you like. I'm not sure if you can send me a personal mail on this forum – if you can please get in contact if you'd like a copy. However, I would recommend that you find a doctor or qualified practitioner who could make your daughter a similar protocol but tailored to her nutritional and immune deficiencies and physiology. Patrick Quillan lists such doctors in the US at the back of his excellent book "Beating Cancer With Nutrition".

        The most important thing is to stay positive and beleive that you are in control. Tell your daughter, "Do not let it define you".

        Good luck and stay strong.

        Tony

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