@ipi-in-dc
Forum Replies Created
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- December 15, 2010 at 4:50 pm
A year ago I changed my diet to eliminate sugar and White flour and eat more vegetables plus a few supplements. I did go to stage 4 anyways. I am on the Ipi/temador trial now and seem to be responding. I believe you have to do what feels right to you, and sometimes just that mental boost can help, whether you stop eating sugar and cleaning up your diet and exercise, or going crazy and feasting like a lazy pig (me prior to diagnoses). I do believe you need to give you own body and immune system every chance to fight and help out the doctors to cure or at least extend your time here. I personally don't believe you can do a thing to change the date and time you are going to die, but you can change the way you live until then. Besides I feel great and am back to doing things I haven't done for years just by cleaning up my lifestyle.
David
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- December 15, 2010 at 4:50 pm
A year ago I changed my diet to eliminate sugar and White flour and eat more vegetables plus a few supplements. I did go to stage 4 anyways. I am on the Ipi/temador trial now and seem to be responding. I believe you have to do what feels right to you, and sometimes just that mental boost can help, whether you stop eating sugar and cleaning up your diet and exercise, or going crazy and feasting like a lazy pig (me prior to diagnoses). I do believe you need to give you own body and immune system every chance to fight and help out the doctors to cure or at least extend your time here. I personally don't believe you can do a thing to change the date and time you are going to die, but you can change the way you live until then. Besides I feel great and am back to doing things I haven't done for years just by cleaning up my lifestyle.
David
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- September 28, 2010 at 7:12 pm
Hi Sue,
Glad to hear you are doing well so far. I also have the rash and had it started in the first few days. Mine has not gone away and has increased some. Mine isn't so bad I need anything as far a perscription. Mine is on the lower back and rump, groin pelvic area near belt, armpits and top of feet. It seems to like the areas that heat and sweat like to stay. I found benadryle and Eveeno bath sopa work OK but I have not found anything that has taken it completely away. And after the last few weeks I have a walking itch all the time all over my body( really weird). But anyways a small price to pay if this is the worst for a good result.
Good Luck
David
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- September 28, 2010 at 7:12 pm
Hi Sue,
Glad to hear you are doing well so far. I also have the rash and had it started in the first few days. Mine has not gone away and has increased some. Mine isn't so bad I need anything as far a perscription. Mine is on the lower back and rump, groin pelvic area near belt, armpits and top of feet. It seems to like the areas that heat and sweat like to stay. I found benadryle and Eveeno bath sopa work OK but I have not found anything that has taken it completely away. And after the last few weeks I have a walking itch all the time all over my body( really weird). But anyways a small price to pay if this is the worst for a good result.
Good Luck
David
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- April 12, 2011 at 9:02 pm
Hey john, thanks for the input, I am a patient at MD with Dr Bedikian who was one of the original guys on bio. He seosnt want to cutbit out because we still have remainder of nodules in lungs and lower back. So he wants to see about all of them at the same time.As far as the bio please tell me more of yours, how long, side effect long and short term and the results you had
David
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- April 12, 2011 at 9:02 pm
Hey john, thanks for the input, I am a patient at MD with Dr Bedikian who was one of the original guys on bio. He seosnt want to cutbit out because we still have remainder of nodules in lungs and lower back. So he wants to see about all of them at the same time.As far as the bio please tell me more of yours, how long, side effect long and short term and the results you had
David
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- April 12, 2011 at 12:51 am
Hey jerry,
The node did grow a few months ago from nothing to the centimeter, he said he was 95% sure of melanoma growth. I also had a biopsy positvie nodule on lower back that did shrink to almost nothing, but I know temador has been known to help subq and not lungs. Just concerned with the growth amount in 8 weeks (almost 100%) of waiting around too long. He would like to leave the node for a control on anything else we do. Trial says any new growth or progression you are off trial.Please continue to feel free to give your input, it helps me think it through.
Also thank you for being one of the main soldiers on the site, most people may not understand the time you guys dedicate
Thanks,
David -
- April 12, 2011 at 12:51 am
Hey jerry,
The node did grow a few months ago from nothing to the centimeter, he said he was 95% sure of melanoma growth. I also had a biopsy positvie nodule on lower back that did shrink to almost nothing, but I know temador has been known to help subq and not lungs. Just concerned with the growth amount in 8 weeks (almost 100%) of waiting around too long. He would like to leave the node for a control on anything else we do. Trial says any new growth or progression you are off trial.Please continue to feel free to give your input, it helps me think it through.
Also thank you for being one of the main soldiers on the site, most people may not understand the time you guys dedicate
Thanks,
David -
- December 16, 2010 at 4:57 pm
Sorry for the delay in getting back. I have been on the trial for about 20 weeks I belive. The Temador give me a flu type feeling at the last day and really fluish for two days following then back to 100%. As far as the Ipi as I'm sure you have read the rash and itch seems to be the main issue, it seems to be worse if you are responding. Mine started as a itch on the lower back after the first dose, then got worse and spread over the next 4 doses. To where it was in my armpits, back, ribs, pelvic area, tops of feet and thighs. Now it has backed off to mainly just the itching, the only place I have a rash is my right thigh (probably due to the LND in the right groin). I found that Gold Bond green label lotion and powder combined did the best at controlling the itching to a tolerable level.
David
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- December 16, 2010 at 4:57 pm
Sorry for the delay in getting back. I have been on the trial for about 20 weeks I belive. The Temador give me a flu type feeling at the last day and really fluish for two days following then back to 100%. As far as the Ipi as I'm sure you have read the rash and itch seems to be the main issue, it seems to be worse if you are responding. Mine started as a itch on the lower back after the first dose, then got worse and spread over the next 4 doses. To where it was in my armpits, back, ribs, pelvic area, tops of feet and thighs. Now it has backed off to mainly just the itching, the only place I have a rash is my right thigh (probably due to the LND in the right groin). I found that Gold Bond green label lotion and powder combined did the best at controlling the itching to a tolerable level.
David
