› Forums › General Melanoma Community › Help with finding and deciding on the best treatment plan
- This topic has 24 replies, 4 voices, and was last updated 11 years, 8 months ago by
Gene_S.
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- August 10, 2012 at 5:16 pm
Well, the initial shock of my 5 yr. NED status being possibly taken away from me has finally eased up. So now it's research, research, research time!!! I'm hearing promising stories of Yervoy and Zelboraf. Someone also suggested I look into Dr. Burzynski. Has anyone had any dealings or experience with his research? Right now I'm still in the waiting game mode for the next set of scans to see what the lung met does in the next 3 months, with the size only being 5mm they are saying that it will not light up on PET and the CT will tell more in November.
Well, the initial shock of my 5 yr. NED status being possibly taken away from me has finally eased up. So now it's research, research, research time!!! I'm hearing promising stories of Yervoy and Zelboraf. Someone also suggested I look into Dr. Burzynski. Has anyone had any dealings or experience with his research? Right now I'm still in the waiting game mode for the next set of scans to see what the lung met does in the next 3 months, with the size only being 5mm they are saying that it will not light up on PET and the CT will tell more in November. I was really questioning my Dr.'s opinion on this until I found out from alot of you all saying that it was the "protocol" with the smallness of the met. Although I do have another Oncologist appt. scheduled in 2 weeks so she may wanna speed things up. I know my research should have never stopped 5 years ago but when I hit the 3 year NED mark, I just let the M word slip to the back of my mind and thought I was gonna be one of the very few that kicked it with the Interferon.
And of course, this could not have come at a worse time. I just found out that I am gonna be a 1st time Grandma in December and was getting ready to enroll in Nursing school. My father has been ill and He needs me as his care-giver. So now instead of being able to completely focus on my new Granddaughter, the health of my dad and school, I get side-lined with this crap!!!!! I know there is a chance of the met being benign but also the chance of it not. Just trying to get my "ducks all in a row" so I can be ready to make some really big decisions. Other than this crap going on I am extremely healthy and a young 45 yrs. old. I blazed through the complete Interferon process and am ready and willing to Kick Mel's A** Again. I know I can do this but just need the research and thoughts and prayers to go into this battle armed!!!!!
Thanks for listening!!!!
Sandy
- Replies
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- August 10, 2012 at 7:15 pm
There is never a "good time" for dealing with this kind of anxiety. For what it's worth, I was in your position 12 years ago. You were given good advice regarding the PET. I had the PET done when the lung nodule was 6 mm, and it came back as a false negative. So I went through a preventable rollercoaster of emotions. In my case, the nodule grew over a 6 week interval, so it was biopsied and it turned out to be melanoma. Ask your oncologist for a rescan in less than 3 months.
I know it's hard emotionally, but try to go ahead with your life. Even if this proves to be a recurrence, there are exciting things going on in treatment options. There are many long-term Stage IV survivors like me on this board. I really believe that in our lifetimes melanoma will be cured, or at least be treated as a long-term disease requiring maintenance drugs.
Best wishes,
Harry
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- August 10, 2012 at 7:15 pm
There is never a "good time" for dealing with this kind of anxiety. For what it's worth, I was in your position 12 years ago. You were given good advice regarding the PET. I had the PET done when the lung nodule was 6 mm, and it came back as a false negative. So I went through a preventable rollercoaster of emotions. In my case, the nodule grew over a 6 week interval, so it was biopsied and it turned out to be melanoma. Ask your oncologist for a rescan in less than 3 months.
I know it's hard emotionally, but try to go ahead with your life. Even if this proves to be a recurrence, there are exciting things going on in treatment options. There are many long-term Stage IV survivors like me on this board. I really believe that in our lifetimes melanoma will be cured, or at least be treated as a long-term disease requiring maintenance drugs.
Best wishes,
Harry
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- August 10, 2012 at 7:15 pm
There is never a "good time" for dealing with this kind of anxiety. For what it's worth, I was in your position 12 years ago. You were given good advice regarding the PET. I had the PET done when the lung nodule was 6 mm, and it came back as a false negative. So I went through a preventable rollercoaster of emotions. In my case, the nodule grew over a 6 week interval, so it was biopsied and it turned out to be melanoma. Ask your oncologist for a rescan in less than 3 months.
I know it's hard emotionally, but try to go ahead with your life. Even if this proves to be a recurrence, there are exciting things going on in treatment options. There are many long-term Stage IV survivors like me on this board. I really believe that in our lifetimes melanoma will be cured, or at least be treated as a long-term disease requiring maintenance drugs.
Best wishes,
Harry
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- August 10, 2012 at 9:05 pm
Hi Sandy,
Presently as I see it, the top drug for melanoma is Yervoy. Equally impressive is doing an alternative cure outside of the USA. Do a search on Ralph Moss and melanoma if you are inclined to go this route. There is a second drug called Zelboraf that will delay the melanoma from spreading but I haven't read of any long term survival results. The next option is IL-2 which is very toxic to your body, however, for the very low percentage of people that it works for it has permanent results. Lastly there are clinical trials. Just remember you are a real life guinea pig if you sign up for a clinical trial as you are signing away any legal rights you have in hopes that they will find a cure for you.
I Strongly recommend that you watch the following short video and do some research on the diet mentioned in the video (search Rave Diet).
I have watched the complete video and the numbers are really amazing as to how many melanoma cancers can be cured by simply changing their diet and lifestyle. Don't forget to get some daily Sun on your skin. The Sun is a gift from God (just don't abuse it). Best wishes, Gene
Healing Cancer From The Inside Out – Preview
http://www.youtube.com/watch?v=j0g_Bbkc5JQ
PS. I considered Dr. Burzynski clinic in Texas but I felt that there were better options in Mexico or the Bahamas'.
He is really doing wonders mainly for brain cancer.
-
- August 12, 2012 at 10:08 pm
Sandy,This site has some great treatment information. Also, Aim at Melanoma, Melanoma International Forum, and American cancer society. I do believe in a healthy lifestyle, especially staying active and cutting down on sugar and carbs. Be sure to find an oncologist specializing in melanoma and dont waste too much time on wacky theories from friends or the Internet about teas, juices, or how big pharmaceutical companies don’t want you to know that your cancer can really be cured with WHATEVER (“cancer spam”). Melanoma is very complicated. You’re young and there are lots of options for you out there we didn’t have 2 years ago.
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- August 12, 2012 at 10:08 pm
Sandy,This site has some great treatment information. Also, Aim at Melanoma, Melanoma International Forum, and American cancer society. I do believe in a healthy lifestyle, especially staying active and cutting down on sugar and carbs. Be sure to find an oncologist specializing in melanoma and dont waste too much time on wacky theories from friends or the Internet about teas, juices, or how big pharmaceutical companies don’t want you to know that your cancer can really be cured with WHATEVER (“cancer spam”). Melanoma is very complicated. You’re young and there are lots of options for you out there we didn’t have 2 years ago.
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- August 13, 2012 at 12:30 am
Hi, In case you haven't realized that the "War on Cancer" was started when Nixon was president. That was over 40 years ago! Do some serious homework on the American Cancer Society and see who's interest they really have in mind. The place to start is to learn how much of their money is spent on "cancer research". Hint very little.
The Melanoma International Forum is governed by a dictator. If she doesn't agree with you, she will cancel your membership. On the other hand this is a great website to cheer up other melanoma victims. Keep that in mind if you are truly hoping to read someones personal opinions. I also believe that on the MIF the moderator is sponsored by the sunscreen/sunblock association, since she is so native about the true benefits of the Sun on your skin. The Sun is a gift from God, very few things will grow without it. It should be noted here than I do not encourage anyone to stay in the Sun any longer than to see you skin change to a slight pink in color or 10 to 15 minutes at lunch time. Spend some time reading about the benefits of sunshine. The scam here again are the big pharma and the sunscreen/sunblock associations. Your dermatologist is no better as they are too influenced by the same trade groups.
As far as the statement "how big pharmaceutical companies don't want you to know that your cancer can really be cured" I personally believe that there is far too much money being made on their treatments that don't work (and they know it). It is often the case that once a patient is told that they are no other options left that they try alternate treatments and when they fail they call them scams… but they never call the Big Phara drugs a scam… why not?
In my opinion we got the whole treatment system backwards. First we should try the juices and cleansing options and in the event that doesn't work then try the drugs (with the serious side effects). However, it will never happen as the doctors and hospitals are all controlled by the big drugs companies.
In closing, I agree with you on the fact that Sandy is young and I would advise her to do a lot of research. Keep in mind that if you believe in big pharma (only) so did Steve Jobs, Michael Landon, Patrick Swayze, Farrah Fawcett and many, many other cancer victims (although not melanoma) that believed in them. They had the money and could afford any treatment any where in the world and they are also DEAD! So the question is "Why are we not calling their treatments scams"? The answer is the media… Big Pharma advertises on the TV, radio, sponsors events etc.
The bottom line is that you are on your own, keep your eyes open for ALL options. Ask about the recommended treatments and the long term response rates especially the long term survival rates.
Best wishes,
Gene
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- August 13, 2012 at 12:30 am
Hi, In case you haven't realized that the "War on Cancer" was started when Nixon was president. That was over 40 years ago! Do some serious homework on the American Cancer Society and see who's interest they really have in mind. The place to start is to learn how much of their money is spent on "cancer research". Hint very little.
The Melanoma International Forum is governed by a dictator. If she doesn't agree with you, she will cancel your membership. On the other hand this is a great website to cheer up other melanoma victims. Keep that in mind if you are truly hoping to read someones personal opinions. I also believe that on the MIF the moderator is sponsored by the sunscreen/sunblock association, since she is so native about the true benefits of the Sun on your skin. The Sun is a gift from God, very few things will grow without it. It should be noted here than I do not encourage anyone to stay in the Sun any longer than to see you skin change to a slight pink in color or 10 to 15 minutes at lunch time. Spend some time reading about the benefits of sunshine. The scam here again are the big pharma and the sunscreen/sunblock associations. Your dermatologist is no better as they are too influenced by the same trade groups.
As far as the statement "how big pharmaceutical companies don't want you to know that your cancer can really be cured" I personally believe that there is far too much money being made on their treatments that don't work (and they know it). It is often the case that once a patient is told that they are no other options left that they try alternate treatments and when they fail they call them scams… but they never call the Big Phara drugs a scam… why not?
In my opinion we got the whole treatment system backwards. First we should try the juices and cleansing options and in the event that doesn't work then try the drugs (with the serious side effects). However, it will never happen as the doctors and hospitals are all controlled by the big drugs companies.
In closing, I agree with you on the fact that Sandy is young and I would advise her to do a lot of research. Keep in mind that if you believe in big pharma (only) so did Steve Jobs, Michael Landon, Patrick Swayze, Farrah Fawcett and many, many other cancer victims (although not melanoma) that believed in them. They had the money and could afford any treatment any where in the world and they are also DEAD! So the question is "Why are we not calling their treatments scams"? The answer is the media… Big Pharma advertises on the TV, radio, sponsors events etc.
The bottom line is that you are on your own, keep your eyes open for ALL options. Ask about the recommended treatments and the long term response rates especially the long term survival rates.
Best wishes,
Gene
-
- August 13, 2012 at 12:30 am
Hi, In case you haven't realized that the "War on Cancer" was started when Nixon was president. That was over 40 years ago! Do some serious homework on the American Cancer Society and see who's interest they really have in mind. The place to start is to learn how much of their money is spent on "cancer research". Hint very little.
The Melanoma International Forum is governed by a dictator. If she doesn't agree with you, she will cancel your membership. On the other hand this is a great website to cheer up other melanoma victims. Keep that in mind if you are truly hoping to read someones personal opinions. I also believe that on the MIF the moderator is sponsored by the sunscreen/sunblock association, since she is so native about the true benefits of the Sun on your skin. The Sun is a gift from God, very few things will grow without it. It should be noted here than I do not encourage anyone to stay in the Sun any longer than to see you skin change to a slight pink in color or 10 to 15 minutes at lunch time. Spend some time reading about the benefits of sunshine. The scam here again are the big pharma and the sunscreen/sunblock associations. Your dermatologist is no better as they are too influenced by the same trade groups.
As far as the statement "how big pharmaceutical companies don't want you to know that your cancer can really be cured" I personally believe that there is far too much money being made on their treatments that don't work (and they know it). It is often the case that once a patient is told that they are no other options left that they try alternate treatments and when they fail they call them scams… but they never call the Big Phara drugs a scam… why not?
In my opinion we got the whole treatment system backwards. First we should try the juices and cleansing options and in the event that doesn't work then try the drugs (with the serious side effects). However, it will never happen as the doctors and hospitals are all controlled by the big drugs companies.
In closing, I agree with you on the fact that Sandy is young and I would advise her to do a lot of research. Keep in mind that if you believe in big pharma (only) so did Steve Jobs, Michael Landon, Patrick Swayze, Farrah Fawcett and many, many other cancer victims (although not melanoma) that believed in them. They had the money and could afford any treatment any where in the world and they are also DEAD! So the question is "Why are we not calling their treatments scams"? The answer is the media… Big Pharma advertises on the TV, radio, sponsors events etc.
The bottom line is that you are on your own, keep your eyes open for ALL options. Ask about the recommended treatments and the long term response rates especially the long term survival rates.
Best wishes,
Gene
-
- August 12, 2012 at 10:08 pm
Sandy,This site has some great treatment information. Also, Aim at Melanoma, Melanoma International Forum, and American cancer society. I do believe in a healthy lifestyle, especially staying active and cutting down on sugar and carbs. Be sure to find an oncologist specializing in melanoma and dont waste too much time on wacky theories from friends or the Internet about teas, juices, or how big pharmaceutical companies don’t want you to know that your cancer can really be cured with WHATEVER (“cancer spam”). Melanoma is very complicated. You’re young and there are lots of options for you out there we didn’t have 2 years ago.
-
- August 11, 2012 at 12:06 am
There are long term survivors on Zelboraf. Check out Dick_K who posted here on June 21 – he reported using Zelboraf for 28 months and still getting clean PETs. And I think there are quite a few like him. On this BB, we tend to here mostly of the recurrences.
Best wishes,
Harry
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- August 11, 2012 at 12:06 am
There are long term survivors on Zelboraf. Check out Dick_K who posted here on June 21 – he reported using Zelboraf for 28 months and still getting clean PETs. And I think there are quite a few like him. On this BB, we tend to here mostly of the recurrences.
Best wishes,
Harry
-
- August 11, 2012 at 12:06 am
There are long term survivors on Zelboraf. Check out Dick_K who posted here on June 21 – he reported using Zelboraf for 28 months and still getting clean PETs. And I think there are quite a few like him. On this BB, we tend to here mostly of the recurrences.
Best wishes,
Harry
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- August 11, 2012 at 2:12 am
Hello Harry,
Thanks for the information on Dick. I really do wish him continued success. I believe that if he reads some of my recent posts and changes his diet and lifestyle that he can live for a long time. One thing that we need to address here is "long term" survivors, usually long term is more like 10 years not 2 years. I don't think that there are any records for Zelboraf trials for that length of time. There are for Yervoy and IL2 and for treatments outside of the USA (call or email for references). Best wishes, Gene
-
- August 11, 2012 at 2:12 am
Hello Harry,
Thanks for the information on Dick. I really do wish him continued success. I believe that if he reads some of my recent posts and changes his diet and lifestyle that he can live for a long time. One thing that we need to address here is "long term" survivors, usually long term is more like 10 years not 2 years. I don't think that there are any records for Zelboraf trials for that length of time. There are for Yervoy and IL2 and for treatments outside of the USA (call or email for references). Best wishes, Gene
-
- August 11, 2012 at 2:12 am
Hello Harry,
Thanks for the information on Dick. I really do wish him continued success. I believe that if he reads some of my recent posts and changes his diet and lifestyle that he can live for a long time. One thing that we need to address here is "long term" survivors, usually long term is more like 10 years not 2 years. I don't think that there are any records for Zelboraf trials for that length of time. There are for Yervoy and IL2 and for treatments outside of the USA (call or email for references). Best wishes, Gene
-
- August 10, 2012 at 9:05 pm
Hi Sandy,
Presently as I see it, the top drug for melanoma is Yervoy. Equally impressive is doing an alternative cure outside of the USA. Do a search on Ralph Moss and melanoma if you are inclined to go this route. There is a second drug called Zelboraf that will delay the melanoma from spreading but I haven't read of any long term survival results. The next option is IL-2 which is very toxic to your body, however, for the very low percentage of people that it works for it has permanent results. Lastly there are clinical trials. Just remember you are a real life guinea pig if you sign up for a clinical trial as you are signing away any legal rights you have in hopes that they will find a cure for you.
I Strongly recommend that you watch the following short video and do some research on the diet mentioned in the video (search Rave Diet).
I have watched the complete video and the numbers are really amazing as to how many melanoma cancers can be cured by simply changing their diet and lifestyle. Don't forget to get some daily Sun on your skin. The Sun is a gift from God (just don't abuse it). Best wishes, Gene
Healing Cancer From The Inside Out – Preview
http://www.youtube.com/watch?v=j0g_Bbkc5JQ
PS. I considered Dr. Burzynski clinic in Texas but I felt that there were better options in Mexico or the Bahamas'.
He is really doing wonders mainly for brain cancer.
-
- August 10, 2012 at 9:05 pm
Hi Sandy,
Presently as I see it, the top drug for melanoma is Yervoy. Equally impressive is doing an alternative cure outside of the USA. Do a search on Ralph Moss and melanoma if you are inclined to go this route. There is a second drug called Zelboraf that will delay the melanoma from spreading but I haven't read of any long term survival results. The next option is IL-2 which is very toxic to your body, however, for the very low percentage of people that it works for it has permanent results. Lastly there are clinical trials. Just remember you are a real life guinea pig if you sign up for a clinical trial as you are signing away any legal rights you have in hopes that they will find a cure for you.
I Strongly recommend that you watch the following short video and do some research on the diet mentioned in the video (search Rave Diet).
I have watched the complete video and the numbers are really amazing as to how many melanoma cancers can be cured by simply changing their diet and lifestyle. Don't forget to get some daily Sun on your skin. The Sun is a gift from God (just don't abuse it). Best wishes, Gene
Healing Cancer From The Inside Out – Preview
http://www.youtube.com/watch?v=j0g_Bbkc5JQ
PS. I considered Dr. Burzynski clinic in Texas but I felt that there were better options in Mexico or the Bahamas'.
He is really doing wonders mainly for brain cancer.
-
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