› Forums › General Melanoma Community › IL2 then Yervoy, now complecations
- This topic has 15 replies, 4 voices, and was last updated 11 years, 8 months ago by NYKaren.
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- August 6, 2012 at 4:25 pm
My brother(37) has stage 4 melanoma on his lungs. In February he underwent IL2 with little positive results so the doctor had him undergo Yervoy starting in April. His only side effect during the treatment was that he lost some hair and his hair turned gray. He finished his treatment in June and went back in July for his 6 week scan. At that time, the big tumor shrunk, and the smaller tumor was GONE!!!!!
My brother(37) has stage 4 melanoma on his lungs. In February he underwent IL2 with little positive results so the doctor had him undergo Yervoy starting in April. His only side effect during the treatment was that he lost some hair and his hair turned gray. He finished his treatment in June and went back in July for his 6 week scan. At that time, the big tumor shrunk, and the smaller tumor was GONE!!!!!
Fast forward to 2 weeks ago, he started to get really bad headaches, and was super tired. Went in for more scans and tests and it was determined that his pituitary gland was swollen causing the severe headaches. He was sent to the hospital for 2 days and is now on steroids. Now this week he has developed severe stomachaches. He went to the ER last night, and they did many tests. THey think its gastrointestinal.
Has anyone else had this? I keep reading the side effects on the Yervoy website and they say that the side effects can be life-threatening…..I am soooo worried!
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- August 6, 2012 at 5:31 pm
Hello Kelly,
My husband also was on Yervoy and had been put on steroids at a low dose because his thyroid quit producing prednisone. Possibly your brother is on to high of a dosage.
My husbands eyebrows turned white as well as part of his beard and he lost skin pigmentation on his face and neck down to his collar bone. So you can probably expect your brothers hair to turn white next and if that is true it is a good sign as the doctor was happy about my husbands eyebrows being white.
My husband also attributes his success to a very high Vitamin D3 level. I would suggest that your brother has his checked. There is a place called Life Extension that is located at 5990 North Federal Highway, Fort Lauderdale, FL 33308 or http://www.lef.org to arrange to have a Vitamin D3 test (hydroxyl 25) .
He didn't have the gastrointestinal problem like your brother. But I would think may not be from the Yervoy as he hasn't had an infusion since June but if so it would probably be the colitis side effect they talk about. Some on here have had the colitis and they can probably guide you on what worked for them.
Yervoy and GM-CSF along with family, prayer and a little red wine my husband is now considered NED (no evidence of disease) which I hope will soon happen with your brother. My husband had it in his lungs, liver, pressing on his spine at the cervical 2 and sub q's.
BTW the best source of Vitamin D3 is from the sun. You only need 10-15 minutes a day between 10 and 2 to get enough for your body. My husband firmly believes that his melanoma was caused by a lack of it. For more inforamtion on him you can look at his profile.
Judy (Loving wife and caregiver of Gene)
P.S. from my husband
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.
P.S.S. The following link should take you to a You Tube video "Dr. Anna Pavlick Speaks at The 2011 Mollie's Fund Golf Outing". The whole video is interesting but if you skip to around the 8:00 minute marker, that is where she talks about white eyebrows.
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- August 6, 2012 at 5:31 pm
Hello Kelly,
My husband also was on Yervoy and had been put on steroids at a low dose because his thyroid quit producing prednisone. Possibly your brother is on to high of a dosage.
My husbands eyebrows turned white as well as part of his beard and he lost skin pigmentation on his face and neck down to his collar bone. So you can probably expect your brothers hair to turn white next and if that is true it is a good sign as the doctor was happy about my husbands eyebrows being white.
My husband also attributes his success to a very high Vitamin D3 level. I would suggest that your brother has his checked. There is a place called Life Extension that is located at 5990 North Federal Highway, Fort Lauderdale, FL 33308 or http://www.lef.org to arrange to have a Vitamin D3 test (hydroxyl 25) .
He didn't have the gastrointestinal problem like your brother. But I would think may not be from the Yervoy as he hasn't had an infusion since June but if so it would probably be the colitis side effect they talk about. Some on here have had the colitis and they can probably guide you on what worked for them.
Yervoy and GM-CSF along with family, prayer and a little red wine my husband is now considered NED (no evidence of disease) which I hope will soon happen with your brother. My husband had it in his lungs, liver, pressing on his spine at the cervical 2 and sub q's.
BTW the best source of Vitamin D3 is from the sun. You only need 10-15 minutes a day between 10 and 2 to get enough for your body. My husband firmly believes that his melanoma was caused by a lack of it. For more inforamtion on him you can look at his profile.
Judy (Loving wife and caregiver of Gene)
P.S. from my husband
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.
P.S.S. The following link should take you to a You Tube video "Dr. Anna Pavlick Speaks at The 2011 Mollie's Fund Golf Outing". The whole video is interesting but if you skip to around the 8:00 minute marker, that is where she talks about white eyebrows.
-
- August 6, 2012 at 5:31 pm
Hello Kelly,
My husband also was on Yervoy and had been put on steroids at a low dose because his thyroid quit producing prednisone. Possibly your brother is on to high of a dosage.
My husbands eyebrows turned white as well as part of his beard and he lost skin pigmentation on his face and neck down to his collar bone. So you can probably expect your brothers hair to turn white next and if that is true it is a good sign as the doctor was happy about my husbands eyebrows being white.
My husband also attributes his success to a very high Vitamin D3 level. I would suggest that your brother has his checked. There is a place called Life Extension that is located at 5990 North Federal Highway, Fort Lauderdale, FL 33308 or http://www.lef.org to arrange to have a Vitamin D3 test (hydroxyl 25) .
He didn't have the gastrointestinal problem like your brother. But I would think may not be from the Yervoy as he hasn't had an infusion since June but if so it would probably be the colitis side effect they talk about. Some on here have had the colitis and they can probably guide you on what worked for them.
Yervoy and GM-CSF along with family, prayer and a little red wine my husband is now considered NED (no evidence of disease) which I hope will soon happen with your brother. My husband had it in his lungs, liver, pressing on his spine at the cervical 2 and sub q's.
BTW the best source of Vitamin D3 is from the sun. You only need 10-15 minutes a day between 10 and 2 to get enough for your body. My husband firmly believes that his melanoma was caused by a lack of it. For more inforamtion on him you can look at his profile.
Judy (Loving wife and caregiver of Gene)
P.S. from my husband
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.
P.S.S. The following link should take you to a You Tube video "Dr. Anna Pavlick Speaks at The 2011 Mollie's Fund Golf Outing". The whole video is interesting but if you skip to around the 8:00 minute marker, that is where she talks about white eyebrows.
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- August 7, 2012 at 12:29 am
Hi Kelly, you mention he went to the ER…is he not being followed up at a comprehensive melanoma center? This can all be related to his treatment/prior treatment…he should be seeing his oncologist. Outside doctors really have no scope of whats going on since he has been in clinical trials. He should not start suppements until discussing them first with his oncologist. They can conflict with his treatment drugs. I happen to be on 5000 u/l a week because my endocrine doc at Moffitt Cancer Center did blood work and confirmed I was low. He says many people with melanoma have low levels. Most people with melanoma get the 10-20 minutes of sun a day and it does not supply the needed amount…its due to poor absorption of our bodies…any more exposure would cause more damage. Yervoy has many side effects not all are listed on the website…he needs to see his oncologist…not the ER docs…
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- August 7, 2012 at 12:29 am
Hi Kelly, you mention he went to the ER…is he not being followed up at a comprehensive melanoma center? This can all be related to his treatment/prior treatment…he should be seeing his oncologist. Outside doctors really have no scope of whats going on since he has been in clinical trials. He should not start suppements until discussing them first with his oncologist. They can conflict with his treatment drugs. I happen to be on 5000 u/l a week because my endocrine doc at Moffitt Cancer Center did blood work and confirmed I was low. He says many people with melanoma have low levels. Most people with melanoma get the 10-20 minutes of sun a day and it does not supply the needed amount…its due to poor absorption of our bodies…any more exposure would cause more damage. Yervoy has many side effects not all are listed on the website…he needs to see his oncologist…not the ER docs…
-
- August 7, 2012 at 12:29 am
Hi Kelly, you mention he went to the ER…is he not being followed up at a comprehensive melanoma center? This can all be related to his treatment/prior treatment…he should be seeing his oncologist. Outside doctors really have no scope of whats going on since he has been in clinical trials. He should not start suppements until discussing them first with his oncologist. They can conflict with his treatment drugs. I happen to be on 5000 u/l a week because my endocrine doc at Moffitt Cancer Center did blood work and confirmed I was low. He says many people with melanoma have low levels. Most people with melanoma get the 10-20 minutes of sun a day and it does not supply the needed amount…its due to poor absorption of our bodies…any more exposure would cause more damage. Yervoy has many side effects not all are listed on the website…he needs to see his oncologist…not the ER docs…
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- August 7, 2012 at 3:34 am
Hi Kelly,
Sorry about your brother – he and Jeff did IL2 at the same time. I have read that Yervoy can cause colitis and that it's very serious, but they usually give specific steroids that just work in the colon. Have they offered that?
Keep us informed, please. God Bless…hoping for the best ๐
Jeff's Mom (Bridgette)
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- August 7, 2012 at 3:11 pm
Hi Kelly,
I had similar complications. I did Yervoy reinduction, 3rd and last infusion was in April.
Developed severe colitis from the Yervoy AND after being put on steroids, lost adrenal function.
FYI, the only way that I was admitted to Sloan for the colitis was by going through their ER.
Bridgette, the drug you're thinking of that only works in the intestines is Budesenide. But it's really for Yervoy diarhhea…when it gets to colitis, prednisone is usually called for. Very interesting: when I went to Sloan's Endochronologist for the Adrenal insufficiency, (at that time I was still on Pred. and Budesonide) she (after consulting w/Dr. Wolchok) told me to stop the Budesonide, because there's a corelation between Budesonide and lack of Adrenal function. Who would have thunk it?
Only yesterday did I take my last (I hope) steroid dose because testing shows my adrenals are functioning again.
Now, if they could only do something about the melanoma…(Status posting to follow.)
Please keep us posted.
karen
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- August 7, 2012 at 3:11 pm
Hi Kelly,
I had similar complications. I did Yervoy reinduction, 3rd and last infusion was in April.
Developed severe colitis from the Yervoy AND after being put on steroids, lost adrenal function.
FYI, the only way that I was admitted to Sloan for the colitis was by going through their ER.
Bridgette, the drug you're thinking of that only works in the intestines is Budesenide. But it's really for Yervoy diarhhea…when it gets to colitis, prednisone is usually called for. Very interesting: when I went to Sloan's Endochronologist for the Adrenal insufficiency, (at that time I was still on Pred. and Budesonide) she (after consulting w/Dr. Wolchok) told me to stop the Budesonide, because there's a corelation between Budesonide and lack of Adrenal function. Who would have thunk it?
Only yesterday did I take my last (I hope) steroid dose because testing shows my adrenals are functioning again.
Now, if they could only do something about the melanoma…(Status posting to follow.)
Please keep us posted.
karen
-
- August 7, 2012 at 3:11 pm
Hi Kelly,
I had similar complications. I did Yervoy reinduction, 3rd and last infusion was in April.
Developed severe colitis from the Yervoy AND after being put on steroids, lost adrenal function.
FYI, the only way that I was admitted to Sloan for the colitis was by going through their ER.
Bridgette, the drug you're thinking of that only works in the intestines is Budesenide. But it's really for Yervoy diarhhea…when it gets to colitis, prednisone is usually called for. Very interesting: when I went to Sloan's Endochronologist for the Adrenal insufficiency, (at that time I was still on Pred. and Budesonide) she (after consulting w/Dr. Wolchok) told me to stop the Budesonide, because there's a corelation between Budesonide and lack of Adrenal function. Who would have thunk it?
Only yesterday did I take my last (I hope) steroid dose because testing shows my adrenals are functioning again.
Now, if they could only do something about the melanoma…(Status posting to follow.)
Please keep us posted.
karen
-
- August 7, 2012 at 3:34 am
Hi Kelly,
Sorry about your brother – he and Jeff did IL2 at the same time. I have read that Yervoy can cause colitis and that it's very serious, but they usually give specific steroids that just work in the colon. Have they offered that?
Keep us informed, please. God Bless…hoping for the best ๐
Jeff's Mom (Bridgette)
-
- August 7, 2012 at 3:34 am
Hi Kelly,
Sorry about your brother – he and Jeff did IL2 at the same time. I have read that Yervoy can cause colitis and that it's very serious, but they usually give specific steroids that just work in the colon. Have they offered that?
Keep us informed, please. God Bless…hoping for the best ๐
Jeff's Mom (Bridgette)
-
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