› Forums › General Melanoma Community › Past & Present Yervoy Users, need your help please
- This topic has 39 replies, 13 voices, and was last updated 11 years ago by
jogo.
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- November 11, 2014 at 11:02 am
My husband will be starting Yervoy in the next couple weeks. Of course my main concerns are to be on the outlook for any and all side effects. Can you please share with me your experiences and the things you may have had in the house to help combat them. Trying to be as best prepared as I can. Most importantly did it stable your disease? Thank you all so much for your help.
Jewel
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- November 11, 2014 at 4:30 pm
Hi Jewel,
I'm so sorry for this and I will pray for you and your family.
My father was diagnosed this past June with Stage 4. He started Yervoy two weeks later and according to his doctor, he responded really well. My dad had no real side effects besides fatigue. He also hasn't stopped working and gained back the 12 pounds he lost. 🙂 Our doctor said it's different for everyone and the main thing to do is to listen to your body.
Yervoy has been a blessing for my father who just turned 60. I wish you and your husband many blessings during treatment.
Thanks,
Kiley
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- November 11, 2014 at 4:30 pm
Hi Jewel,
I'm so sorry for this and I will pray for you and your family.
My father was diagnosed this past June with Stage 4. He started Yervoy two weeks later and according to his doctor, he responded really well. My dad had no real side effects besides fatigue. He also hasn't stopped working and gained back the 12 pounds he lost. 🙂 Our doctor said it's different for everyone and the main thing to do is to listen to your body.
Yervoy has been a blessing for my father who just turned 60. I wish you and your husband many blessings during treatment.
Thanks,
Kiley
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- November 11, 2014 at 4:30 pm
Hi Jewel,
I'm so sorry for this and I will pray for you and your family.
My father was diagnosed this past June with Stage 4. He started Yervoy two weeks later and according to his doctor, he responded really well. My dad had no real side effects besides fatigue. He also hasn't stopped working and gained back the 12 pounds he lost. 🙂 Our doctor said it's different for everyone and the main thing to do is to listen to your body.
Yervoy has been a blessing for my father who just turned 60. I wish you and your husband many blessings during treatment.
Thanks,
Kiley
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- November 11, 2014 at 5:45 pm
I had no real side affects either. Minor rash, very minor stomach churning. That was about it.
Make sure you contact your doctor's office though if he does have side affects. You could ask them what are the most common side affects they see and what he should take. They also told me I probably wouldn't notice anything until at least the 2nd dose. But everyone is different.
Sorry but not good news as to what it did for my disease. It shrank nothing and everything kept growing with the left shoulder tumor growing like crazy. But that is just me and everyone is different. That was last winter and I'm still fighting so maybe it helped in some way. The immune system is a complex tricky thing.
Artie
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- November 11, 2014 at 5:45 pm
I had no real side affects either. Minor rash, very minor stomach churning. That was about it.
Make sure you contact your doctor's office though if he does have side affects. You could ask them what are the most common side affects they see and what he should take. They also told me I probably wouldn't notice anything until at least the 2nd dose. But everyone is different.
Sorry but not good news as to what it did for my disease. It shrank nothing and everything kept growing with the left shoulder tumor growing like crazy. But that is just me and everyone is different. That was last winter and I'm still fighting so maybe it helped in some way. The immune system is a complex tricky thing.
Artie
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- November 11, 2014 at 5:45 pm
I had no real side affects either. Minor rash, very minor stomach churning. That was about it.
Make sure you contact your doctor's office though if he does have side affects. You could ask them what are the most common side affects they see and what he should take. They also told me I probably wouldn't notice anything until at least the 2nd dose. But everyone is different.
Sorry but not good news as to what it did for my disease. It shrank nothing and everything kept growing with the left shoulder tumor growing like crazy. But that is just me and everyone is different. That was last winter and I'm still fighting so maybe it helped in some way. The immune system is a complex tricky thing.
Artie
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- November 11, 2014 at 7:30 pm
Jewel,
My advice would be to make sure you know who to report any side effects to.
Report any side effects ASAP and don't try to tough it out. Especially any headaches and diarrhea.
I had pituitary swelling and mild diarrhea. The diarrhea was controlled with Imodium and the headaches/pituitary swelling is controlled with steriods.
As far as success I was surgically NED before the Yervoy and 8 months later I continue to be NED
Good Luck
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- November 11, 2014 at 7:30 pm
Jewel,
My advice would be to make sure you know who to report any side effects to.
Report any side effects ASAP and don't try to tough it out. Especially any headaches and diarrhea.
I had pituitary swelling and mild diarrhea. The diarrhea was controlled with Imodium and the headaches/pituitary swelling is controlled with steriods.
As far as success I was surgically NED before the Yervoy and 8 months later I continue to be NED
Good Luck
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- November 11, 2014 at 7:30 pm
Jewel,
My advice would be to make sure you know who to report any side effects to.
Report any side effects ASAP and don't try to tough it out. Especially any headaches and diarrhea.
I had pituitary swelling and mild diarrhea. The diarrhea was controlled with Imodium and the headaches/pituitary swelling is controlled with steriods.
As far as success I was surgically NED before the Yervoy and 8 months later I continue to be NED
Good Luck
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- November 12, 2014 at 1:54 am
Jewel-
I did Yervoy a year ago followed by IL-2. Yervoy was mild in comparison though I did have side effects…thyroid function,fatigue, itchy rash and mild stomach issues. As others said, make sure any issues your husband has, let the onc know right away. Praying this is a magic bullett!
Josh
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- November 12, 2014 at 1:54 am
Jewel-
I did Yervoy a year ago followed by IL-2. Yervoy was mild in comparison though I did have side effects…thyroid function,fatigue, itchy rash and mild stomach issues. As others said, make sure any issues your husband has, let the onc know right away. Praying this is a magic bullett!
Josh
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- November 12, 2014 at 1:54 am
Jewel-
I did Yervoy a year ago followed by IL-2. Yervoy was mild in comparison though I did have side effects…thyroid function,fatigue, itchy rash and mild stomach issues. As others said, make sure any issues your husband has, let the onc know right away. Praying this is a magic bullett!
Josh
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- November 12, 2014 at 5:14 am
If you check my post history, I have written several times about how my husband managed the side effects. He is NED. Hope that helps. Be sure to have immodium and Benadryl on hand and do not have more than 2 bouts of diarrhea before you take the immodium.
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- November 12, 2014 at 5:14 am
If you check my post history, I have written several times about how my husband managed the side effects. He is NED. Hope that helps. Be sure to have immodium and Benadryl on hand and do not have more than 2 bouts of diarrhea before you take the immodium.
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- November 12, 2014 at 5:14 am
If you check my post history, I have written several times about how my husband managed the side effects. He is NED. Hope that helps. Be sure to have immodium and Benadryl on hand and do not have more than 2 bouts of diarrhea before you take the immodium.
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- November 12, 2014 at 11:40 am
Thank you to all of you who took the time to reply, I don't have to tell anyone here how valuable and comforting this site is. Also going to talk about radiation with oncologist.
Jewel
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- November 12, 2014 at 1:15 pm
Hi Jewel,
Good luck to you and your husband, I was NED when I went through Yervoy three years ago. I had some itchiness which was tolerable. During my third infusion (lterally as I was in the chair) I started to have a very bad headache that turned out to be a swollen pituitary. I wish I had been more aware of this particular side effect because my pituitary gland no longer produces cortisol (I am on 7.5 mg prednisone/daily). The headache was right behind my eyes.
Good luck,
Brendan
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- November 12, 2014 at 1:15 pm
Hi Jewel,
Good luck to you and your husband, I was NED when I went through Yervoy three years ago. I had some itchiness which was tolerable. During my third infusion (lterally as I was in the chair) I started to have a very bad headache that turned out to be a swollen pituitary. I wish I had been more aware of this particular side effect because my pituitary gland no longer produces cortisol (I am on 7.5 mg prednisone/daily). The headache was right behind my eyes.
Good luck,
Brendan
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- November 12, 2014 at 1:15 pm
Hi Jewel,
Good luck to you and your husband, I was NED when I went through Yervoy three years ago. I had some itchiness which was tolerable. During my third infusion (lterally as I was in the chair) I started to have a very bad headache that turned out to be a swollen pituitary. I wish I had been more aware of this particular side effect because my pituitary gland no longer produces cortisol (I am on 7.5 mg prednisone/daily). The headache was right behind my eyes.
Good luck,
Brendan
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- November 12, 2014 at 1:45 pm
Jewel,
I have had 2 infusions so far, 3rd scheduled next week. Since first infusion I have suffured insanely painful and uncomfortable rashes. I was put on 12+ mg/day of dexamethasone, a very high dosage. The effects from this were worse than the Yervoy effects. I am almost completely tapered off of the steroids, 2mg/every other day. My tox screenings have all been normal, i have another one tomorrow.
Sorry to be the bringer of bad news, and perhaps I am the exception from what I've heard, but Yervoy can be uncomfortable.
As far as what to keep on hand, 1% hydrocortisone cream, a prescription strength cortisone cream, and ask for a lowest effective steroid to have on hand if something more intense does show up.
hope this is of some help.
bless,
kali -
- November 12, 2014 at 1:45 pm
Jewel,
I have had 2 infusions so far, 3rd scheduled next week. Since first infusion I have suffured insanely painful and uncomfortable rashes. I was put on 12+ mg/day of dexamethasone, a very high dosage. The effects from this were worse than the Yervoy effects. I am almost completely tapered off of the steroids, 2mg/every other day. My tox screenings have all been normal, i have another one tomorrow.
Sorry to be the bringer of bad news, and perhaps I am the exception from what I've heard, but Yervoy can be uncomfortable.
As far as what to keep on hand, 1% hydrocortisone cream, a prescription strength cortisone cream, and ask for a lowest effective steroid to have on hand if something more intense does show up.
hope this is of some help.
bless,
kali -
- November 12, 2014 at 1:45 pm
Jewel,
I have had 2 infusions so far, 3rd scheduled next week. Since first infusion I have suffured insanely painful and uncomfortable rashes. I was put on 12+ mg/day of dexamethasone, a very high dosage. The effects from this were worse than the Yervoy effects. I am almost completely tapered off of the steroids, 2mg/every other day. My tox screenings have all been normal, i have another one tomorrow.
Sorry to be the bringer of bad news, and perhaps I am the exception from what I've heard, but Yervoy can be uncomfortable.
As far as what to keep on hand, 1% hydrocortisone cream, a prescription strength cortisone cream, and ask for a lowest effective steroid to have on hand if something more intense does show up.
hope this is of some help.
bless,
kali -
- November 12, 2014 at 2:57 pm
Hi Jewel,
My husband tood 10 mg/kg of Yervoy and GM-CSF clinical trial and it started in March 2011 ater becoming Stage IV in Oct. 2010.
Most importantly get a phone number to reach if side effects do appear. While he has many rashes, some fatigue he didn't have the major ones. His body no longer produces prednisone so he takes 7.5 mg a day. When his eyebrows starting turning white the doctor said it meant the yervoy was working. He took the original 4 doses in 12 weeks and then maintenance of 1 dose every 12 weeks for a year and a half. He has been NED since Oct. of 2012 and remains that way. He also lost some pigmentation on his face and neck. But NED was worth the price.
You can read more about him at his profile.
Judy (loving wife of Gene Stage IV and now NED)
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- November 12, 2014 at 2:57 pm
Hi Jewel,
My husband tood 10 mg/kg of Yervoy and GM-CSF clinical trial and it started in March 2011 ater becoming Stage IV in Oct. 2010.
Most importantly get a phone number to reach if side effects do appear. While he has many rashes, some fatigue he didn't have the major ones. His body no longer produces prednisone so he takes 7.5 mg a day. When his eyebrows starting turning white the doctor said it meant the yervoy was working. He took the original 4 doses in 12 weeks and then maintenance of 1 dose every 12 weeks for a year and a half. He has been NED since Oct. of 2012 and remains that way. He also lost some pigmentation on his face and neck. But NED was worth the price.
You can read more about him at his profile.
Judy (loving wife of Gene Stage IV and now NED)
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- November 12, 2014 at 2:57 pm
Hi Jewel,
My husband tood 10 mg/kg of Yervoy and GM-CSF clinical trial and it started in March 2011 ater becoming Stage IV in Oct. 2010.
Most importantly get a phone number to reach if side effects do appear. While he has many rashes, some fatigue he didn't have the major ones. His body no longer produces prednisone so he takes 7.5 mg a day. When his eyebrows starting turning white the doctor said it meant the yervoy was working. He took the original 4 doses in 12 weeks and then maintenance of 1 dose every 12 weeks for a year and a half. He has been NED since Oct. of 2012 and remains that way. He also lost some pigmentation on his face and neck. But NED was worth the price.
You can read more about him at his profile.
Judy (loving wife of Gene Stage IV and now NED)
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- November 14, 2014 at 1:54 am
I'm stage 4 metastatic Mel. I had 2 doses of Yervoy and had a rash and itching that was controlled with benadryl but developed colitis and was in the hospital for 3 days. I could not finish the other 2 doses. The doctor still said it worked. Just be sure to watch for side effects and call right away. Hope it all works out.
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- November 14, 2014 at 1:54 am
I'm stage 4 metastatic Mel. I had 2 doses of Yervoy and had a rash and itching that was controlled with benadryl but developed colitis and was in the hospital for 3 days. I could not finish the other 2 doses. The doctor still said it worked. Just be sure to watch for side effects and call right away. Hope it all works out.
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- November 14, 2014 at 1:54 am
I'm stage 4 metastatic Mel. I had 2 doses of Yervoy and had a rash and itching that was controlled with benadryl but developed colitis and was in the hospital for 3 days. I could not finish the other 2 doses. The doctor still said it worked. Just be sure to watch for side effects and call right away. Hope it all works out.
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- November 14, 2014 at 6:32 am
Finished Yervoy Aug 13 with just a little fatigue and weight gain..Drink plenty of water.I drank V-8 juice 3x a day to get my veggie intake and threw in a couple nutritional drinks also..I had scans in Sept and it's working so far..Scans again next month..Good luck
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- November 14, 2014 at 6:32 am
Finished Yervoy Aug 13 with just a little fatigue and weight gain..Drink plenty of water.I drank V-8 juice 3x a day to get my veggie intake and threw in a couple nutritional drinks also..I had scans in Sept and it's working so far..Scans again next month..Good luck
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- November 16, 2014 at 6:50 am
NED since surgery 06/06/13. Only 2 infusions of 3 mg/K. Had to stop because an irAE, immune related adverse event, diarrhea, which became colitis then severe inflammatory ulcerative colitis. Remicade stopped the bleeding and harnessed my rampant immune system. I was very unusual (a zebra among horses). I repeat, NED since surgery 06/06/13! Report diarrhea immediately to oncologist. Keep track of temperature. 100.4 F or above call oncologist no matter what time of day. I agree with Ginger888. Hydrate! water, V-8 juice, Ensure clear (in case dairy upsets gut). As a precaution, look up what foods to avoid if one has crones or colitis before anything adverse happens and practice moderation. I'm very optimistic about Yervoy. Good Luck!
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- November 16, 2014 at 6:50 am
NED since surgery 06/06/13. Only 2 infusions of 3 mg/K. Had to stop because an irAE, immune related adverse event, diarrhea, which became colitis then severe inflammatory ulcerative colitis. Remicade stopped the bleeding and harnessed my rampant immune system. I was very unusual (a zebra among horses). I repeat, NED since surgery 06/06/13! Report diarrhea immediately to oncologist. Keep track of temperature. 100.4 F or above call oncologist no matter what time of day. I agree with Ginger888. Hydrate! water, V-8 juice, Ensure clear (in case dairy upsets gut). As a precaution, look up what foods to avoid if one has crones or colitis before anything adverse happens and practice moderation. I'm very optimistic about Yervoy. Good Luck!
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- November 16, 2014 at 6:50 am
NED since surgery 06/06/13. Only 2 infusions of 3 mg/K. Had to stop because an irAE, immune related adverse event, diarrhea, which became colitis then severe inflammatory ulcerative colitis. Remicade stopped the bleeding and harnessed my rampant immune system. I was very unusual (a zebra among horses). I repeat, NED since surgery 06/06/13! Report diarrhea immediately to oncologist. Keep track of temperature. 100.4 F or above call oncologist no matter what time of day. I agree with Ginger888. Hydrate! water, V-8 juice, Ensure clear (in case dairy upsets gut). As a precaution, look up what foods to avoid if one has crones or colitis before anything adverse happens and practice moderation. I'm very optimistic about Yervoy. Good Luck!
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- November 14, 2014 at 6:32 am
Finished Yervoy Aug 13 with just a little fatigue and weight gain..Drink plenty of water.I drank V-8 juice 3x a day to get my veggie intake and threw in a couple nutritional drinks also..I had scans in Sept and it's working so far..Scans again next month..Good luck
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