› Forums › General Melanoma Community › Short list hoping to make it longer :)
- This topic has 36 replies, 6 voices, and was last updated 11 years, 7 months ago by Gene_S.
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- August 7, 2012 at 12:50 pm
Hi,
I am in a limbo phase at moment while I wait for a zapped brain met to "calm down". I will have scans in a month to see how brain is and then have to chose from the "short list" my doctor as suggested.
Hi,
I am in a limbo phase at moment while I wait for a zapped brain met to "calm down". I will have scans in a month to see how brain is and then have to chose from the "short list" my doctor as suggested.
His suggestions are IL-2 or TIL. (I am leanings towards IL but I was told if scans show brain involvement on next scans IL will not be an option as it doesnt cross brain barrier) Doctor and I will continue to look at PD-1 trials but he is pesssimistic that I would get a seat as there are few trial and brain involvement moves you down the list he thought, but I still will look/hope and apply. BUT meanwhile have to have another game plan as back up.
I was told it would be very hard to push for a reinduction of IPPI for me as i was a mixed responder with partial growth or some shrinkage in most tumors but real growth in my shoulder tumor. I was a partial responder (story of my life with melanoma it seems) with BRAF and grew 3 very agressive tumors in my intestines so BRAF scares me as a choice to go back to. I am going to research BRAF MEK combo but I believe my doctor does not think I qualify for that one? not sure why.
I have just found a new small tumor on my other shoulder and this one is painful – that is new for me most of mine are not painful, it makes me scared that cancer is starting to ramp up on me.
I would appreciate any thoughts or input from people as I sit in limbo I can do research and come in armed with my own thoughts on plan after I hear my scans results. I am currently getting radiation on my shoulder to cut it down a little as it is a very large tumor.
you are all in my thoughts and prayers-thank you
laurie from maine
- Replies
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- August 7, 2012 at 1:29 pm
I'm sorry to hear you're dealing with all of this. Your profile indicates you were initially Stage I, less than 1mm. Is that right? I've always thought it has been said those are "low risk?" But, obviously that is not the case.
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- August 8, 2012 at 5:33 pm
HI
Yes you read correctly. My first melanoma was in my ankle and below 1, I was told I was "one of the lucky ones" that they caught it early etc etc. Unfortunately I became one of the "unlucky ones" and the small percentage, that even thou small and was fully removed, my melanoma had started to travel. I hate to have my situation scare people, I believe it is a very rare amount of people 5% that it spreads like mine did. I had asked if we had done scans at time of ankle surgery if that would have shown lymph node in hip having melanoma. The doctors feel that it probably would not have shown up on scans at that point as it was so small.
I believe now my dermatologist is very careful to never again say "you are one of the lucky ones" and he advises his patients to talk to melanoma specialists despite size of melanoma removed.
Take care
laurie from maine
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- August 8, 2012 at 5:33 pm
HI
Yes you read correctly. My first melanoma was in my ankle and below 1, I was told I was "one of the lucky ones" that they caught it early etc etc. Unfortunately I became one of the "unlucky ones" and the small percentage, that even thou small and was fully removed, my melanoma had started to travel. I hate to have my situation scare people, I believe it is a very rare amount of people 5% that it spreads like mine did. I had asked if we had done scans at time of ankle surgery if that would have shown lymph node in hip having melanoma. The doctors feel that it probably would not have shown up on scans at that point as it was so small.
I believe now my dermatologist is very careful to never again say "you are one of the lucky ones" and he advises his patients to talk to melanoma specialists despite size of melanoma removed.
Take care
laurie from maine
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- August 8, 2012 at 5:33 pm
HI
Yes you read correctly. My first melanoma was in my ankle and below 1, I was told I was "one of the lucky ones" that they caught it early etc etc. Unfortunately I became one of the "unlucky ones" and the small percentage, that even thou small and was fully removed, my melanoma had started to travel. I hate to have my situation scare people, I believe it is a very rare amount of people 5% that it spreads like mine did. I had asked if we had done scans at time of ankle surgery if that would have shown lymph node in hip having melanoma. The doctors feel that it probably would not have shown up on scans at that point as it was so small.
I believe now my dermatologist is very careful to never again say "you are one of the lucky ones" and he advises his patients to talk to melanoma specialists despite size of melanoma removed.
Take care
laurie from maine
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- August 7, 2012 at 1:35 pm
Laurie, I would definitely look into Braf and MEK combo trials, you have that option, which is great! Also, some doctors are combining chemos with braf drugs, like temodar and braf, if your brain mets still need more help calming down, consider this combo! You have to decide if you are willing to travel, MDAnderson offers biochemo and has TIL trial. We also receive care in Boston, and go to Dana Farber for review next week. Phil did nine months of care in Houston at MDAnderson, and has done biochemo, IL2, and TIL. Email me directly if you have any questions! Keep fighting! Valerie (Phil’s wife)-
- August 7, 2012 at 2:59 pm
Hi Laurie,
We are quite similar, partial response is the story of my life.
I'm not sure why your doc would think you wouldn't be a candidate for ipi reinduction. I was a partial responder to ipi, did not progress while on it. Since it's FDA approved, unless it's an insurance issue, you should be able to do it again. (I'm not advocating that you do it, but just suggesting that it should be an option.)
You are lucky that you're BRAF+. It sounds like the BRAF/MED combo is very promising.
all the best,
karen
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- August 7, 2012 at 2:59 pm
Hi Laurie,
We are quite similar, partial response is the story of my life.
I'm not sure why your doc would think you wouldn't be a candidate for ipi reinduction. I was a partial responder to ipi, did not progress while on it. Since it's FDA approved, unless it's an insurance issue, you should be able to do it again. (I'm not advocating that you do it, but just suggesting that it should be an option.)
You are lucky that you're BRAF+. It sounds like the BRAF/MED combo is very promising.
all the best,
karen
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- August 7, 2012 at 2:59 pm
Hi Laurie,
We are quite similar, partial response is the story of my life.
I'm not sure why your doc would think you wouldn't be a candidate for ipi reinduction. I was a partial responder to ipi, did not progress while on it. Since it's FDA approved, unless it's an insurance issue, you should be able to do it again. (I'm not advocating that you do it, but just suggesting that it should be an option.)
You are lucky that you're BRAF+. It sounds like the BRAF/MED combo is very promising.
all the best,
karen
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- August 8, 2012 at 5:54 pm
Hi Karen,
Thank you for your response, I appreciate it.
Yes partial responder is not a story either of us wants! But I guess some response is better than none. I can tell my doctor gets frustrated with my results and he along with us is hoping for more!
I was only told it might be a hard sell to the insurance company to get me to reinduce ippi. My doctor said if we want to he will "go to bat" for us, but warned it will be the insurance company holding it back.
Yes I am lucky for the option of BRAF. But I will be honest it scares me to death as in my case after 3 months I developed 3 very agressive tumors in my intestines that tripled in a month and a half and needed to be removed asap. I have been warned that if tumors appear again in my intestines (two surgeries in a year already) they are not sure the surgeon will go back in, so it is a scary thought for me. But the combo of BRAF MEK sounds promising.
I wish you the best I realize your short list is shorter than mine, but we all need to hold on and hope PD-1 or something else is around the corner and will be the answer.
Take care
Laurie from maine
ps What part of NY are you from? We are heading to cooperstown NY this weekend with a group of families, I just love it out there so beautiful – the men/boys like the baseball hall of fame but I love the lake and the camping 🙂
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- August 8, 2012 at 5:54 pm
Hi Karen,
Thank you for your response, I appreciate it.
Yes partial responder is not a story either of us wants! But I guess some response is better than none. I can tell my doctor gets frustrated with my results and he along with us is hoping for more!
I was only told it might be a hard sell to the insurance company to get me to reinduce ippi. My doctor said if we want to he will "go to bat" for us, but warned it will be the insurance company holding it back.
Yes I am lucky for the option of BRAF. But I will be honest it scares me to death as in my case after 3 months I developed 3 very agressive tumors in my intestines that tripled in a month and a half and needed to be removed asap. I have been warned that if tumors appear again in my intestines (two surgeries in a year already) they are not sure the surgeon will go back in, so it is a scary thought for me. But the combo of BRAF MEK sounds promising.
I wish you the best I realize your short list is shorter than mine, but we all need to hold on and hope PD-1 or something else is around the corner and will be the answer.
Take care
Laurie from maine
ps What part of NY are you from? We are heading to cooperstown NY this weekend with a group of families, I just love it out there so beautiful – the men/boys like the baseball hall of fame but I love the lake and the camping 🙂
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- August 8, 2012 at 5:54 pm
Hi Karen,
Thank you for your response, I appreciate it.
Yes partial responder is not a story either of us wants! But I guess some response is better than none. I can tell my doctor gets frustrated with my results and he along with us is hoping for more!
I was only told it might be a hard sell to the insurance company to get me to reinduce ippi. My doctor said if we want to he will "go to bat" for us, but warned it will be the insurance company holding it back.
Yes I am lucky for the option of BRAF. But I will be honest it scares me to death as in my case after 3 months I developed 3 very agressive tumors in my intestines that tripled in a month and a half and needed to be removed asap. I have been warned that if tumors appear again in my intestines (two surgeries in a year already) they are not sure the surgeon will go back in, so it is a scary thought for me. But the combo of BRAF MEK sounds promising.
I wish you the best I realize your short list is shorter than mine, but we all need to hold on and hope PD-1 or something else is around the corner and will be the answer.
Take care
Laurie from maine
ps What part of NY are you from? We are heading to cooperstown NY this weekend with a group of families, I just love it out there so beautiful – the men/boys like the baseball hall of fame but I love the lake and the camping 🙂
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- August 8, 2012 at 5:44 pm
Hi Valerie,
Thank you for your reply. I am definitely looking into the BRAF MEK combo. I wasnt sure if I qualified having already done BRAF, but am checking in to that. I hadnt heard of the BRAF and temodar that sounds like a good option if I do have brain issues, thank you for that information. I am very leery of the TIL treatment as it sounds like it really beats you up. Did phil have any response to that treatment? IL2 sounds like the lesser of the two with the hope I would be one of the lucky ones who responds well to it.
I appreciate so much your input. This board and everyone on it is so valuable with information, resources and as well all know the support we all need. Thank you Valerie.
Laurie from maine
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- August 8, 2012 at 5:44 pm
Hi Valerie,
Thank you for your reply. I am definitely looking into the BRAF MEK combo. I wasnt sure if I qualified having already done BRAF, but am checking in to that. I hadnt heard of the BRAF and temodar that sounds like a good option if I do have brain issues, thank you for that information. I am very leery of the TIL treatment as it sounds like it really beats you up. Did phil have any response to that treatment? IL2 sounds like the lesser of the two with the hope I would be one of the lucky ones who responds well to it.
I appreciate so much your input. This board and everyone on it is so valuable with information, resources and as well all know the support we all need. Thank you Valerie.
Laurie from maine
-
- August 8, 2012 at 5:44 pm
Hi Valerie,
Thank you for your reply. I am definitely looking into the BRAF MEK combo. I wasnt sure if I qualified having already done BRAF, but am checking in to that. I hadnt heard of the BRAF and temodar that sounds like a good option if I do have brain issues, thank you for that information. I am very leery of the TIL treatment as it sounds like it really beats you up. Did phil have any response to that treatment? IL2 sounds like the lesser of the two with the hope I would be one of the lucky ones who responds well to it.
I appreciate so much your input. This board and everyone on it is so valuable with information, resources and as well all know the support we all need. Thank you Valerie.
Laurie from maine
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- August 8, 2012 at 5:48 pm
Valerie,
How is phil doing? I do like the care I get at Mass General and knowing that all three hospitals work together with treatment and research.
thank you again
laurie from maine
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- August 8, 2012 at 5:48 pm
Valerie,
How is phil doing? I do like the care I get at Mass General and knowing that all three hospitals work together with treatment and research.
thank you again
laurie from maine
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- August 8, 2012 at 5:48 pm
Valerie,
How is phil doing? I do like the care I get at Mass General and knowing that all three hospitals work together with treatment and research.
thank you again
laurie from maine
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- August 7, 2012 at 1:35 pm
Laurie, I would definitely look into Braf and MEK combo trials, you have that option, which is great! Also, some doctors are combining chemos with braf drugs, like temodar and braf, if your brain mets still need more help calming down, consider this combo! You have to decide if you are willing to travel, MDAnderson offers biochemo and has TIL trial. We also receive care in Boston, and go to Dana Farber for review next week. Phil did nine months of care in Houston at MDAnderson, and has done biochemo, IL2, and TIL. Email me directly if you have any questions! Keep fighting! Valerie (Phil’s wife) -
- August 7, 2012 at 1:35 pm
Laurie, I would definitely look into Braf and MEK combo trials, you have that option, which is great! Also, some doctors are combining chemos with braf drugs, like temodar and braf, if your brain mets still need more help calming down, consider this combo! You have to decide if you are willing to travel, MDAnderson offers biochemo and has TIL trial. We also receive care in Boston, and go to Dana Farber for review next week. Phil did nine months of care in Houston at MDAnderson, and has done biochemo, IL2, and TIL. Email me directly if you have any questions! Keep fighting! Valerie (Phil’s wife) -
- August 8, 2012 at 3:15 am
Laurie,
Here is the same suggestion that I gave to Kevin…
If I were you, I would do a search on "Ralph Moss and Melanoma" to see what the best efficient melanoma treatments are available Worldwide. Check out what is available in Mexico and elsewhere, don't wait until your health is beyond hope. You need to change your lifestyle and diet including drinking more spring water and getting more sunlight. A good book to start with is "The Makers Diet" also see http://www.vegparadise.com/media13.html for more ideas. Most important is your "Attitude" keep learning and fighting this disease.
Change your thinking and Diet, see http://www.youtube.com/watch?v=y9BoNMw-iSk
Before I was accepted into my clinical trial I was seriously considering go to Chipsa, you may want to contact them for more info if you want to go that route? Also watch http://www.youtube.com/watch?v=z5kU6W9vj50&feature=related
There is also a way to get your health insurance company to help paying for this, if interested let me know?
Best wishes,
Gene
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- August 8, 2012 at 3:15 am
Laurie,
Here is the same suggestion that I gave to Kevin…
If I were you, I would do a search on "Ralph Moss and Melanoma" to see what the best efficient melanoma treatments are available Worldwide. Check out what is available in Mexico and elsewhere, don't wait until your health is beyond hope. You need to change your lifestyle and diet including drinking more spring water and getting more sunlight. A good book to start with is "The Makers Diet" also see http://www.vegparadise.com/media13.html for more ideas. Most important is your "Attitude" keep learning and fighting this disease.
Change your thinking and Diet, see http://www.youtube.com/watch?v=y9BoNMw-iSk
Before I was accepted into my clinical trial I was seriously considering go to Chipsa, you may want to contact them for more info if you want to go that route? Also watch http://www.youtube.com/watch?v=z5kU6W9vj50&feature=related
There is also a way to get your health insurance company to help paying for this, if interested let me know?
Best wishes,
Gene
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- August 8, 2012 at 5:59 pm
Thank you Gene,
Have you completely changed your diet now, ? I believe the clinical trial is what helped you initially? then you switched to this diet? I am just curious what order it worked for you as I see you are a very strong advocate of this program. I appreciate your concern and information.
Thank you
laurie from maine
-
- August 8, 2012 at 5:59 pm
Thank you Gene,
Have you completely changed your diet now, ? I believe the clinical trial is what helped you initially? then you switched to this diet? I am just curious what order it worked for you as I see you are a very strong advocate of this program. I appreciate your concern and information.
Thank you
laurie from maine
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- August 9, 2012 at 10:45 pm
Hi Laurie,
When I was first diagnosed with melanoma I made it my full time job to find out why I developed it and to locate a cure for it. In most of my research the diet theory kept coming up. I have since changed my diet after developing melanoma but not to the strict one that is needed to cure cancer. Also found out that vitamin D-3 could prevent up to 77% of all cancers. Why are they not shouting this fact everywhere? The answer is that there is no money to be made selling a cheap supplement (free if you get it from the sun) that is why I preach to get your Vitamin D-3 levels checked. Since you are from Maine, I bet that your vitamin D-3 levels are very very low. The range for vitamin D-3 is 0 to 30 very low, 30 to 70 normal and 80 and above for anyone battling cancer. When I still had melanoma mine tested at 89. Also needed is selenium and COQ10 (Ubinquol). Plenty of good water(spring water is best) and rest ie. a good night sleep. Stress is very hard on a cancer victim.
Keep in mind that the cancer industry is a huge money making business and that many people say that it is "profits over people". One example of that is why do they keep suggesting drugs that have proven not to work? Money!
I have also purchased and read many books including the "Ralph Moss report on melanoma". There are people being cured outside of the USA, which I was ready and willing to do if necessary. The key here is not to wait until it is too late that the body can't reverse the disease.
The way that I see it is that clinical trials are necessary and will likely benefit a melanoma victim someday in the future but you need to find out what working now.
Best wishes,
Gene
-
- August 9, 2012 at 10:45 pm
Hi Laurie,
When I was first diagnosed with melanoma I made it my full time job to find out why I developed it and to locate a cure for it. In most of my research the diet theory kept coming up. I have since changed my diet after developing melanoma but not to the strict one that is needed to cure cancer. Also found out that vitamin D-3 could prevent up to 77% of all cancers. Why are they not shouting this fact everywhere? The answer is that there is no money to be made selling a cheap supplement (free if you get it from the sun) that is why I preach to get your Vitamin D-3 levels checked. Since you are from Maine, I bet that your vitamin D-3 levels are very very low. The range for vitamin D-3 is 0 to 30 very low, 30 to 70 normal and 80 and above for anyone battling cancer. When I still had melanoma mine tested at 89. Also needed is selenium and COQ10 (Ubinquol). Plenty of good water(spring water is best) and rest ie. a good night sleep. Stress is very hard on a cancer victim.
Keep in mind that the cancer industry is a huge money making business and that many people say that it is "profits over people". One example of that is why do they keep suggesting drugs that have proven not to work? Money!
I have also purchased and read many books including the "Ralph Moss report on melanoma". There are people being cured outside of the USA, which I was ready and willing to do if necessary. The key here is not to wait until it is too late that the body can't reverse the disease.
The way that I see it is that clinical trials are necessary and will likely benefit a melanoma victim someday in the future but you need to find out what working now.
Best wishes,
Gene
-
- August 9, 2012 at 10:45 pm
Hi Laurie,
When I was first diagnosed with melanoma I made it my full time job to find out why I developed it and to locate a cure for it. In most of my research the diet theory kept coming up. I have since changed my diet after developing melanoma but not to the strict one that is needed to cure cancer. Also found out that vitamin D-3 could prevent up to 77% of all cancers. Why are they not shouting this fact everywhere? The answer is that there is no money to be made selling a cheap supplement (free if you get it from the sun) that is why I preach to get your Vitamin D-3 levels checked. Since you are from Maine, I bet that your vitamin D-3 levels are very very low. The range for vitamin D-3 is 0 to 30 very low, 30 to 70 normal and 80 and above for anyone battling cancer. When I still had melanoma mine tested at 89. Also needed is selenium and COQ10 (Ubinquol). Plenty of good water(spring water is best) and rest ie. a good night sleep. Stress is very hard on a cancer victim.
Keep in mind that the cancer industry is a huge money making business and that many people say that it is "profits over people". One example of that is why do they keep suggesting drugs that have proven not to work? Money!
I have also purchased and read many books including the "Ralph Moss report on melanoma". There are people being cured outside of the USA, which I was ready and willing to do if necessary. The key here is not to wait until it is too late that the body can't reverse the disease.
The way that I see it is that clinical trials are necessary and will likely benefit a melanoma victim someday in the future but you need to find out what working now.
Best wishes,
Gene
-
- August 8, 2012 at 5:59 pm
Thank you Gene,
Have you completely changed your diet now, ? I believe the clinical trial is what helped you initially? then you switched to this diet? I am just curious what order it worked for you as I see you are a very strong advocate of this program. I appreciate your concern and information.
Thank you
laurie from maine
-
- August 8, 2012 at 3:15 am
Laurie,
Here is the same suggestion that I gave to Kevin…
If I were you, I would do a search on "Ralph Moss and Melanoma" to see what the best efficient melanoma treatments are available Worldwide. Check out what is available in Mexico and elsewhere, don't wait until your health is beyond hope. You need to change your lifestyle and diet including drinking more spring water and getting more sunlight. A good book to start with is "The Makers Diet" also see http://www.vegparadise.com/media13.html for more ideas. Most important is your "Attitude" keep learning and fighting this disease.
Change your thinking and Diet, see http://www.youtube.com/watch?v=y9BoNMw-iSk
Before I was accepted into my clinical trial I was seriously considering go to Chipsa, you may want to contact them for more info if you want to go that route? Also watch http://www.youtube.com/watch?v=z5kU6W9vj50&feature=related
There is also a way to get your health insurance company to help paying for this, if interested let me know?
Best wishes,
Gene
-
- August 8, 2012 at 6:50 pm
Laurie,
You may want to consider an eval at NIH and see what they have to offer in one of their TIL protocols/trials. The three I know about –
1. The randomized TIL protocol comparing their "standard" cell treatment +/- total body irradiation as lymphodepletion.
2. In braf + people combining Vemurafenib and their TIL protocol
3. A TIL protocol with IL-12. –
I am on the first one I listed and have had a good response so far. I don't know a lot about the other two but an evaluation can't hurt.
Good Luck and let me know if there is anything I can do to help. Troy
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- August 8, 2012 at 6:50 pm
Laurie,
You may want to consider an eval at NIH and see what they have to offer in one of their TIL protocols/trials. The three I know about –
1. The randomized TIL protocol comparing their "standard" cell treatment +/- total body irradiation as lymphodepletion.
2. In braf + people combining Vemurafenib and their TIL protocol
3. A TIL protocol with IL-12. –
I am on the first one I listed and have had a good response so far. I don't know a lot about the other two but an evaluation can't hurt.
Good Luck and let me know if there is anything I can do to help. Troy
-
- August 8, 2012 at 6:50 pm
Laurie,
You may want to consider an eval at NIH and see what they have to offer in one of their TIL protocols/trials. The three I know about –
1. The randomized TIL protocol comparing their "standard" cell treatment +/- total body irradiation as lymphodepletion.
2. In braf + people combining Vemurafenib and their TIL protocol
3. A TIL protocol with IL-12. –
I am on the first one I listed and have had a good response so far. I don't know a lot about the other two but an evaluation can't hurt.
Good Luck and let me know if there is anything I can do to help. Troy
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