› Forums › General Melanoma Community › Zelboraf question.
- This topic has 45 replies, 8 voices, and was last updated 4 years ago by
himynameiskevin.
- Post
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- August 1, 2012 at 1:21 am
I've been suggested to stop Zelboraf for awhile as I have had more progression in my head.
After stabilizing my head via SRS or WBR, think the idea is that I'll do IL-2 again or give Temador a shot, while getting back on Zelboraf.
I think I've decided my dose this morning will be my last for now and I'm just wondering, to those out there who were on it, but aren't anymore, are there any side effects from withdrawal you've experienced or I should know about?
Thank you for any information.
-Kevin
I've been suggested to stop Zelboraf for awhile as I have had more progression in my head.
After stabilizing my head via SRS or WBR, think the idea is that I'll do IL-2 again or give Temador a shot, while getting back on Zelboraf.
I think I've decided my dose this morning will be my last for now and I'm just wondering, to those out there who were on it, but aren't anymore, are there any side effects from withdrawal you've experienced or I should know about?
Thank you for any information.
-Kevin
- Replies
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- August 1, 2012 at 3:50 am
Kevin,I’ve stopped for 2 weeks, 2 days, 3 days, reduced and upped dosages all for management of side effects and haven’t had any withdrawl troubles. Never heard of anyone else having trouble either. Hopefully this will ease your mind as you have enough to deal with. Best of luck to you.
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- August 1, 2012 at 3:50 am
Kevin,I’ve stopped for 2 weeks, 2 days, 3 days, reduced and upped dosages all for management of side effects and haven’t had any withdrawl troubles. Never heard of anyone else having trouble either. Hopefully this will ease your mind as you have enough to deal with. Best of luck to you.
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- August 1, 2012 at 3:50 am
Kevin,I’ve stopped for 2 weeks, 2 days, 3 days, reduced and upped dosages all for management of side effects and haven’t had any withdrawl troubles. Never heard of anyone else having trouble either. Hopefully this will ease your mind as you have enough to deal with. Best of luck to you.
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- August 1, 2012 at 4:09 pm
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. As previous mentioned check out what is available in Mexico, 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.
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 1, 2012 at 4:09 pm
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. As previous mentioned check out what is available in Mexico, 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.
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 1, 2012 at 10:15 pm
Thanks Gene, You'll be happy to hear, the majority of my diet is all organic and vegetarian. I've worked at an all-organic vegetarian health food store for 7 years, as a cook in the vegan deli/restaurant. The store is just a couple blocks away from home and I get an employee discount. So luckily, this diet, is naturally the most convenient.
I agree with most of what the link you posted says.
I also read your treatment history, or your profile, pretty cool. I'm happy for your success. It's inspiring that sometimes, things can workout, I believe attitude plays a huge role, and is what I need to focus on most right now. Hopefully some scans and establishing a "plan" will spark some much needed genuine optimism. The waiting around is always the hardest part.
Good luck on your continuous success.
-Kevin
-
- August 1, 2012 at 10:15 pm
Thanks Gene, You'll be happy to hear, the majority of my diet is all organic and vegetarian. I've worked at an all-organic vegetarian health food store for 7 years, as a cook in the vegan deli/restaurant. The store is just a couple blocks away from home and I get an employee discount. So luckily, this diet, is naturally the most convenient.
I agree with most of what the link you posted says.
I also read your treatment history, or your profile, pretty cool. I'm happy for your success. It's inspiring that sometimes, things can workout, I believe attitude plays a huge role, and is what I need to focus on most right now. Hopefully some scans and establishing a "plan" will spark some much needed genuine optimism. The waiting around is always the hardest part.
Good luck on your continuous success.
-Kevin
-
- August 2, 2012 at 1:02 am
RE: Good luck on your continuous success.
Thank You Kevin
—————————————————————–
Having spent hundreds of hours on researching my melanoma there are a few supplements that may help you along with improving your diet. One is Ubiquinol see the bottom right side in the following article. http://viewer.zmags.com/publication/24527127#/24527127/12
Another is Selenium, every cancer victim is deficient in it.
The Sun or vitamin D-3. If you won't go outside and get the real vitamin D-3 from the Sun , take supplements. Yes the Sun causes skin cancer but NOT melanoma!
Have your blood tested for a vitamin D-3 deficiency. All Cancer patients should be in the upper testing range. I use http://www.lef.org for any blood tests that are out of my pocket expenses. Most people should be using the Sun which is free and the best source, the key here is never stay in the Sun too long! When your skin is starting to turn pink… it is time to seek shade. The correct supplement rate is 35 times your weight, ie if your weight is 200 lbs. take 7000 units daily. Start with half that amount and increase it weekly until you are up to the proper dose.
You also should be making green vegetable smoothies daily. Fresh carrot juice is a must. No Baby carrots!
Drink more good water, especially if you can get it from a tested local spring.
I just starting taking Magnesium supplements but haven't done much research on it. It is called the spark plug of life so I am doing more homework on it.
Again you are a young man that needs to grow old (I also agree with Harry's comments) so I am going to post the the reply that I received from that dad who I bought my Moss Report from (I bought it on ebay) when I asked if the Moss report helped his melanoma.
"We bought this report for our 28 year old son who was a doctor and was ready to start his residency, but the cancer prevented that. Because the report has so many options we did follow up on a number of them. Because our son was an allopathic doctor initially he wasn't very enthused about some of the alternative therapies. He did try many of the supplements and dietary options, but I think his tumor load was too great by the time we started to investigate and try them. He fought the Melanoma for two years altogether before he died, but didn't start some of these alternatives until about 3 – 4 months before he died, and I think it was too late."
Again best wishes to you, I hope to do more traveling as I have since retired and possibly we can have lunch someday. Gene
-
- August 2, 2012 at 1:02 am
RE: Good luck on your continuous success.
Thank You Kevin
—————————————————————–
Having spent hundreds of hours on researching my melanoma there are a few supplements that may help you along with improving your diet. One is Ubiquinol see the bottom right side in the following article. http://viewer.zmags.com/publication/24527127#/24527127/12
Another is Selenium, every cancer victim is deficient in it.
The Sun or vitamin D-3. If you won't go outside and get the real vitamin D-3 from the Sun , take supplements. Yes the Sun causes skin cancer but NOT melanoma!
Have your blood tested for a vitamin D-3 deficiency. All Cancer patients should be in the upper testing range. I use http://www.lef.org for any blood tests that are out of my pocket expenses. Most people should be using the Sun which is free and the best source, the key here is never stay in the Sun too long! When your skin is starting to turn pink… it is time to seek shade. The correct supplement rate is 35 times your weight, ie if your weight is 200 lbs. take 7000 units daily. Start with half that amount and increase it weekly until you are up to the proper dose.
You also should be making green vegetable smoothies daily. Fresh carrot juice is a must. No Baby carrots!
Drink more good water, especially if you can get it from a tested local spring.
I just starting taking Magnesium supplements but haven't done much research on it. It is called the spark plug of life so I am doing more homework on it.
Again you are a young man that needs to grow old (I also agree with Harry's comments) so I am going to post the the reply that I received from that dad who I bought my Moss Report from (I bought it on ebay) when I asked if the Moss report helped his melanoma.
"We bought this report for our 28 year old son who was a doctor and was ready to start his residency, but the cancer prevented that. Because the report has so many options we did follow up on a number of them. Because our son was an allopathic doctor initially he wasn't very enthused about some of the alternative therapies. He did try many of the supplements and dietary options, but I think his tumor load was too great by the time we started to investigate and try them. He fought the Melanoma for two years altogether before he died, but didn't start some of these alternatives until about 3 – 4 months before he died, and I think it was too late."
Again best wishes to you, I hope to do more traveling as I have since retired and possibly we can have lunch someday. Gene
-
- August 2, 2012 at 3:47 am
Hi Gene,
Ubiquinol seems pretty complicated but I've got some pages bookmarked, I'll look more into it. Judging by what food's I eat regularly, I'd assume my selenium intake is fine. Maybe the blood work I get tomorrow will show that? If so, I could switch from Macadamia nuts to Brazil nuts which I eat a ton of because of their high healthy fat and calories and their anti-inflammatory benefits. My work's got a huge bin of brazil nuts, never tried them though. As I'm not going to be on Zelboraf, my skin should be able to get it the sun soon, although I have been taking a supplement Vitamin D-3 since I started I definitely look forward to the real rays. You'd be happy to hear, most every single day, I have a "green drink" from my work, it's basically blended kales, chards, lettuce, greens, a little fruit, hemp seeds, spirolena, and water. And I'd say 98% of all water consumed in the last 2 years, was spring water or essentia alkaline water.
According to scans, and constant progression, I can't say I've ever benefited from my diet, but then again, maybe it's my diet, that's helping keep me around a little longer?? I don't know.. just eating what feels right, and makes me feel good. I try not too stress too much over it, which I've done before and I feel the stress burden outweighing the nutritional benefits.
If you ever make it to San Diego, my work would be right up your alley. If I can get my health under control, I might be cooking your meal. 🙂
http://www.yelp.com/biz/ocean-beach-peoples-organic-food-market-san-diego
-Kevin
-
- August 2, 2012 at 3:47 am
Hi Gene,
Ubiquinol seems pretty complicated but I've got some pages bookmarked, I'll look more into it. Judging by what food's I eat regularly, I'd assume my selenium intake is fine. Maybe the blood work I get tomorrow will show that? If so, I could switch from Macadamia nuts to Brazil nuts which I eat a ton of because of their high healthy fat and calories and their anti-inflammatory benefits. My work's got a huge bin of brazil nuts, never tried them though. As I'm not going to be on Zelboraf, my skin should be able to get it the sun soon, although I have been taking a supplement Vitamin D-3 since I started I definitely look forward to the real rays. You'd be happy to hear, most every single day, I have a "green drink" from my work, it's basically blended kales, chards, lettuce, greens, a little fruit, hemp seeds, spirolena, and water. And I'd say 98% of all water consumed in the last 2 years, was spring water or essentia alkaline water.
According to scans, and constant progression, I can't say I've ever benefited from my diet, but then again, maybe it's my diet, that's helping keep me around a little longer?? I don't know.. just eating what feels right, and makes me feel good. I try not too stress too much over it, which I've done before and I feel the stress burden outweighing the nutritional benefits.
If you ever make it to San Diego, my work would be right up your alley. If I can get my health under control, I might be cooking your meal. 🙂
http://www.yelp.com/biz/ocean-beach-peoples-organic-food-market-san-diego
-Kevin
-
- August 2, 2012 at 3:47 am
Hi Gene,
Ubiquinol seems pretty complicated but I've got some pages bookmarked, I'll look more into it. Judging by what food's I eat regularly, I'd assume my selenium intake is fine. Maybe the blood work I get tomorrow will show that? If so, I could switch from Macadamia nuts to Brazil nuts which I eat a ton of because of their high healthy fat and calories and their anti-inflammatory benefits. My work's got a huge bin of brazil nuts, never tried them though. As I'm not going to be on Zelboraf, my skin should be able to get it the sun soon, although I have been taking a supplement Vitamin D-3 since I started I definitely look forward to the real rays. You'd be happy to hear, most every single day, I have a "green drink" from my work, it's basically blended kales, chards, lettuce, greens, a little fruit, hemp seeds, spirolena, and water. And I'd say 98% of all water consumed in the last 2 years, was spring water or essentia alkaline water.
According to scans, and constant progression, I can't say I've ever benefited from my diet, but then again, maybe it's my diet, that's helping keep me around a little longer?? I don't know.. just eating what feels right, and makes me feel good. I try not too stress too much over it, which I've done before and I feel the stress burden outweighing the nutritional benefits.
If you ever make it to San Diego, my work would be right up your alley. If I can get my health under control, I might be cooking your meal. 🙂
http://www.yelp.com/biz/ocean-beach-peoples-organic-food-market-san-diego
-Kevin
-
- August 2, 2012 at 1:02 am
RE: Good luck on your continuous success.
Thank You Kevin
—————————————————————–
Having spent hundreds of hours on researching my melanoma there are a few supplements that may help you along with improving your diet. One is Ubiquinol see the bottom right side in the following article. http://viewer.zmags.com/publication/24527127#/24527127/12
Another is Selenium, every cancer victim is deficient in it.
The Sun or vitamin D-3. If you won't go outside and get the real vitamin D-3 from the Sun , take supplements. Yes the Sun causes skin cancer but NOT melanoma!
Have your blood tested for a vitamin D-3 deficiency. All Cancer patients should be in the upper testing range. I use http://www.lef.org for any blood tests that are out of my pocket expenses. Most people should be using the Sun which is free and the best source, the key here is never stay in the Sun too long! When your skin is starting to turn pink… it is time to seek shade. The correct supplement rate is 35 times your weight, ie if your weight is 200 lbs. take 7000 units daily. Start with half that amount and increase it weekly until you are up to the proper dose.
You also should be making green vegetable smoothies daily. Fresh carrot juice is a must. No Baby carrots!
Drink more good water, especially if you can get it from a tested local spring.
I just starting taking Magnesium supplements but haven't done much research on it. It is called the spark plug of life so I am doing more homework on it.
Again you are a young man that needs to grow old (I also agree with Harry's comments) so I am going to post the the reply that I received from that dad who I bought my Moss Report from (I bought it on ebay) when I asked if the Moss report helped his melanoma.
"We bought this report for our 28 year old son who was a doctor and was ready to start his residency, but the cancer prevented that. Because the report has so many options we did follow up on a number of them. Because our son was an allopathic doctor initially he wasn't very enthused about some of the alternative therapies. He did try many of the supplements and dietary options, but I think his tumor load was too great by the time we started to investigate and try them. He fought the Melanoma for two years altogether before he died, but didn't start some of these alternatives until about 3 – 4 months before he died, and I think it was too late."
Again best wishes to you, I hope to do more traveling as I have since retired and possibly we can have lunch someday. Gene
-
- August 1, 2012 at 10:15 pm
Thanks Gene, You'll be happy to hear, the majority of my diet is all organic and vegetarian. I've worked at an all-organic vegetarian health food store for 7 years, as a cook in the vegan deli/restaurant. The store is just a couple blocks away from home and I get an employee discount. So luckily, this diet, is naturally the most convenient.
I agree with most of what the link you posted says.
I also read your treatment history, or your profile, pretty cool. I'm happy for your success. It's inspiring that sometimes, things can workout, I believe attitude plays a huge role, and is what I need to focus on most right now. Hopefully some scans and establishing a "plan" will spark some much needed genuine optimism. The waiting around is always the hardest part.
Good luck on your continuous success.
-Kevin
-
- August 1, 2012 at 4:09 pm
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. As previous mentioned check out what is available in Mexico, 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.
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 1, 2012 at 6:32 pm
Hi Kevin.
So sorry for what you are going through. I have read that most people on the board after stopping Zelboraf, their side effects stop. At least that is good news for your quality of like issue.
When will you have the results of your PET/CT scan for your other tumors??/
You are in my prayers. Please keep us posted.
Amy
-
- August 1, 2012 at 6:32 pm
Hi Kevin.
So sorry for what you are going through. I have read that most people on the board after stopping Zelboraf, their side effects stop. At least that is good news for your quality of like issue.
When will you have the results of your PET/CT scan for your other tumors??/
You are in my prayers. Please keep us posted.
Amy
-
- August 1, 2012 at 6:38 pm
Kevin
I had no problems stopping. In fact I felt better as zelboraf had messed my stomach up. I don’t think any side effects are expected when you stop
Good luck
Stay strong!! -
- August 1, 2012 at 6:38 pm
Kevin
I had no problems stopping. In fact I felt better as zelboraf had messed my stomach up. I don’t think any side effects are expected when you stop
Good luck
Stay strong!! -
- August 1, 2012 at 6:38 pm
Kevin
I had no problems stopping. In fact I felt better as zelboraf had messed my stomach up. I don’t think any side effects are expected when you stop
Good luck
Stay strong!! -
- August 2, 2012 at 3:51 am
Well, after a lot of phone calls and waiting today. I found out it was ordered a month ago, but something got mixed up and it was canceled and reordered. Long story short, it's been approved, and tomorrow I can schedule a date. Hopefully sooner than later.
-
- August 2, 2012 at 3:51 am
Well, after a lot of phone calls and waiting today. I found out it was ordered a month ago, but something got mixed up and it was canceled and reordered. Long story short, it's been approved, and tomorrow I can schedule a date. Hopefully sooner than later.
-
- August 2, 2012 at 3:51 am
Well, after a lot of phone calls and waiting today. I found out it was ordered a month ago, but something got mixed up and it was canceled and reordered. Long story short, it's been approved, and tomorrow I can schedule a date. Hopefully sooner than later.
-
- August 1, 2012 at 6:32 pm
Hi Kevin.
So sorry for what you are going through. I have read that most people on the board after stopping Zelboraf, their side effects stop. At least that is good news for your quality of like issue.
When will you have the results of your PET/CT scan for your other tumors??/
You are in my prayers. Please keep us posted.
Amy
-
- August 1, 2012 at 10:01 pm
Thanks for the replies, I took my last dose yesterday morning for the time being. My serious side effects (the muscle aches and joint pains, pains in hand and feet, headache, certain skin irritations, etc..) have long since passed, months ago.
But the stomach/gastrointestinal irritations and slight skin irritations seem to be fading already. Happy I shouldn't be experiencing anything unfortunate. Looking forward to being able to be in the sun again. With caution of course.
Thanks for he input. -Kevin
-
- August 1, 2012 at 10:01 pm
Thanks for the replies, I took my last dose yesterday morning for the time being. My serious side effects (the muscle aches and joint pains, pains in hand and feet, headache, certain skin irritations, etc..) have long since passed, months ago.
But the stomach/gastrointestinal irritations and slight skin irritations seem to be fading already. Happy I shouldn't be experiencing anything unfortunate. Looking forward to being able to be in the sun again. With caution of course.
Thanks for he input. -Kevin
-
- August 1, 2012 at 11:18 pm
My husband "David" had to discontinue (he was on it before it was approved) because of progression of brain mets. He did not have any withdrawals or anything like that – in fact the remainder of his body has stayed in remission – just can't control the brain mets as well….yet!
-
- August 1, 2012 at 11:18 pm
My husband "David" had to discontinue (he was on it before it was approved) because of progression of brain mets. He did not have any withdrawals or anything like that – in fact the remainder of his body has stayed in remission – just can't control the brain mets as well….yet!
-
- August 1, 2012 at 11:18 pm
My husband "David" had to discontinue (he was on it before it was approved) because of progression of brain mets. He did not have any withdrawals or anything like that – in fact the remainder of his body has stayed in remission – just can't control the brain mets as well….yet!
-
- August 1, 2012 at 10:01 pm
Thanks for the replies, I took my last dose yesterday morning for the time being. My serious side effects (the muscle aches and joint pains, pains in hand and feet, headache, certain skin irritations, etc..) have long since passed, months ago.
But the stomach/gastrointestinal irritations and slight skin irritations seem to be fading already. Happy I shouldn't be experiencing anything unfortunate. Looking forward to being able to be in the sun again. With caution of course.
Thanks for he input. -Kevin
-
- August 2, 2012 at 12:02 am
Kevin,
I am in my 65 & stage 4. I have been NED for 7 months.
It depresses me so see how young you are & having so many treatmnets, it is not fair!!! You should be NED with a lifetime ahead of you.
Life is a crap shoot. Why are some surviving this dreaded disease yet others/so many friends have passed away.
I believe attitude is important but give yourself a break, it is natural to be disappointed with everything you have been through. You are only human.
You are a brave young man. I will pray that your body scans show your treatments have worked on shrinking those tumors and you only have to dealwith the brain mets.
Wishing you the BEST!! Stay strong!
Harry
-
- August 2, 2012 at 12:02 am
Kevin,
I am in my 65 & stage 4. I have been NED for 7 months.
It depresses me so see how young you are & having so many treatmnets, it is not fair!!! You should be NED with a lifetime ahead of you.
Life is a crap shoot. Why are some surviving this dreaded disease yet others/so many friends have passed away.
I believe attitude is important but give yourself a break, it is natural to be disappointed with everything you have been through. You are only human.
You are a brave young man. I will pray that your body scans show your treatments have worked on shrinking those tumors and you only have to dealwith the brain mets.
Wishing you the BEST!! Stay strong!
Harry
-
- August 2, 2012 at 3:52 am
Hi Karen, nice to meet you. You're now in my thoughts too.
🙂
-
- August 2, 2012 at 3:52 am
Hi Karen, nice to meet you. You're now in my thoughts too.
🙂
-
- August 2, 2012 at 3:52 am
Hi Karen, nice to meet you. You're now in my thoughts too.
🙂
-
- August 2, 2012 at 4:00 am
Thanks Harry, that was a great pick me up.
-
- August 2, 2012 at 4:00 am
Thanks Harry, that was a great pick me up.
-
- August 2, 2012 at 4:00 am
Thanks Harry, that was a great pick me up.
-
- August 2, 2012 at 12:02 am
Kevin,
I am in my 65 & stage 4. I have been NED for 7 months.
It depresses me so see how young you are & having so many treatmnets, it is not fair!!! You should be NED with a lifetime ahead of you.
Life is a crap shoot. Why are some surviving this dreaded disease yet others/so many friends have passed away.
I believe attitude is important but give yourself a break, it is natural to be disappointed with everything you have been through. You are only human.
You are a brave young man. I will pray that your body scans show your treatments have worked on shrinking those tumors and you only have to dealwith the brain mets.
Wishing you the BEST!! Stay strong!
Harry
-
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