› Forums › General Melanoma Community › Ipilimumab Experiences?
- This topic has 30 replies, 10 voices, and was last updated 9 years, 1 month ago by
arthur.
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- April 13, 2015 at 12:53 am
I posted here about a year and a half ago debating whether or not to take Interferon-Alfa or ipilimumab as an adjuvant therapy and ended up taking Interferon although not necessarily by choice as there were issues with the insurance and Interferon presented itself as the more financially viable option.
I completed the yearlong regiment of Interferon in September and unfortunately a few weeks ago had a recurrence; one tumor in my lower back, one in my shoulder and three on my brain. My initial diagnosis was Stage 3B Nodular Melanoma so we knew recurrence was a strong possibility although this was much more extreme than I had been anticipating. I've underwent radiation of the brain, back and right shoulder, 10 treatments for each area and my oncologist(s) seem (somewhat) optimistic as they've indicated the tumors are (relatively) small. I can't help but think though that the metastasis is very bad for my long-term prognosis however, but I remain pretty positive. For the record, the initial melanoma was in my right shoulder, 6.5 mm thick, ulcerated and had micro metastasis in 1 of 19 lymph nodes removed from surgery.
Anyways I'm currently seeking several opinions from my oncologist and melanoma experts from UW-Madison and the University of Chicago on what my next treatment plan and ipilimumab once again has come up as what my next likely course of treatment will be now that radiation is complete.
My question is for those of you that have taken it how did you handle it? I know everyone responds differently I'm just looking for personal experiences.
I'm 24 and in good shape and health (except for the cancer of course) and plan on graduating university in December. I mention this because the first month of Interferon was absolutely debilitating and forced me to miss one semester already and obviously would like to avoid that happening again (luckily summer is around the corner).
Any experiences you have like how you felt, side effects, how long you were on it, etc. would be greatly appreciated. I've read nearly every article/fact sheet I can about ipilimumab, but I find hearing personal experiences from people on it to be more beneficial than a cookie-cutter list of side-effects you see online.
Thanks.
- Replies
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- April 13, 2015 at 3:52 am
Ipi was easy for me but like you say everyone is different. I took the standard fda approved dosage. Just 4 doses. It actually made me feel better. I had a mild rash and a couple short less than an hour stomach churnings. So pretty much it. Very easy for me but I was also a non responder. They determined that 2 weeks after the last dose. Knowing what I know now they were right although at the time it was quite a shock since they said that scan they didn't put a lot of weight on and things.
One thing I finally learned looking at side affects they I think come from the various trials. So lots of those folks got more than 3 times the dosage and some were every so many weeks for like 2 years. I remember reading on here one of those folks who went NED and continued some more doses to finish out I think the 2 years. So the fda dosage is safer but has risks like any med. some can be very serious like colitis so they told me if I had stomach pains for more tan 24 hours to call. That staff was ones that were the early folks of ipi in the early trials.
Artie
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- April 13, 2015 at 3:52 am
Ipi was easy for me but like you say everyone is different. I took the standard fda approved dosage. Just 4 doses. It actually made me feel better. I had a mild rash and a couple short less than an hour stomach churnings. So pretty much it. Very easy for me but I was also a non responder. They determined that 2 weeks after the last dose. Knowing what I know now they were right although at the time it was quite a shock since they said that scan they didn't put a lot of weight on and things.
One thing I finally learned looking at side affects they I think come from the various trials. So lots of those folks got more than 3 times the dosage and some were every so many weeks for like 2 years. I remember reading on here one of those folks who went NED and continued some more doses to finish out I think the 2 years. So the fda dosage is safer but has risks like any med. some can be very serious like colitis so they told me if I had stomach pains for more tan 24 hours to call. That staff was ones that were the early folks of ipi in the early trials.
Artie
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- April 13, 2015 at 5:21 pm
Hi, I have only had one dose of Ipi and Nivo concurrent. I had fevers and vomiting about 1-2 weeks after the treatment. Also, my thyroid levels have been funky. First they were very high, causing hyperthyroidism, and now they are low, causing hypothyroidism. I am currently on 10mg of prednisone (weening off from 60mg) and a prescription to boost my thyroid. If my blood test today shows improvement, I will get the okay to start treatments again. But since my body didn't like both Ipi and Nivo, they are going to just give me Nivo from here on out. Also, I had a little rash and now peeling of my hands and feet. From what I understand, all of my side effects are quite mild when compared to side effects of other treatment meds. After just the one treatment, most of my tumors are stable, and the one in my small intestine has shrunk!
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- April 13, 2015 at 5:21 pm
Hi, I have only had one dose of Ipi and Nivo concurrent. I had fevers and vomiting about 1-2 weeks after the treatment. Also, my thyroid levels have been funky. First they were very high, causing hyperthyroidism, and now they are low, causing hypothyroidism. I am currently on 10mg of prednisone (weening off from 60mg) and a prescription to boost my thyroid. If my blood test today shows improvement, I will get the okay to start treatments again. But since my body didn't like both Ipi and Nivo, they are going to just give me Nivo from here on out. Also, I had a little rash and now peeling of my hands and feet. From what I understand, all of my side effects are quite mild when compared to side effects of other treatment meds. After just the one treatment, most of my tumors are stable, and the one in my small intestine has shrunk!
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- April 13, 2015 at 5:21 pm
Hi, I have only had one dose of Ipi and Nivo concurrent. I had fevers and vomiting about 1-2 weeks after the treatment. Also, my thyroid levels have been funky. First they were very high, causing hyperthyroidism, and now they are low, causing hypothyroidism. I am currently on 10mg of prednisone (weening off from 60mg) and a prescription to boost my thyroid. If my blood test today shows improvement, I will get the okay to start treatments again. But since my body didn't like both Ipi and Nivo, they are going to just give me Nivo from here on out. Also, I had a little rash and now peeling of my hands and feet. From what I understand, all of my side effects are quite mild when compared to side effects of other treatment meds. After just the one treatment, most of my tumors are stable, and the one in my small intestine has shrunk!
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- April 13, 2015 at 3:52 am
Ipi was easy for me but like you say everyone is different. I took the standard fda approved dosage. Just 4 doses. It actually made me feel better. I had a mild rash and a couple short less than an hour stomach churnings. So pretty much it. Very easy for me but I was also a non responder. They determined that 2 weeks after the last dose. Knowing what I know now they were right although at the time it was quite a shock since they said that scan they didn't put a lot of weight on and things.
One thing I finally learned looking at side affects they I think come from the various trials. So lots of those folks got more than 3 times the dosage and some were every so many weeks for like 2 years. I remember reading on here one of those folks who went NED and continued some more doses to finish out I think the 2 years. So the fda dosage is safer but has risks like any med. some can be very serious like colitis so they told me if I had stomach pains for more tan 24 hours to call. That staff was ones that were the early folks of ipi in the early trials.
Artie
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- April 13, 2015 at 6:53 am
I had 2 doses. An itchy rash but otherwise could get on with my life as normal. Look at getting on to keytruda as soon as possible if the ipi doesn't work. With the immune drugs, the side effects build over time rather than with chemo where it is the worst after you have had your dose. I would think if you've had interferon it will be a breeze ( except for if there is colitis as artie said)
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- April 13, 2015 at 6:53 am
I had 2 doses. An itchy rash but otherwise could get on with my life as normal. Look at getting on to keytruda as soon as possible if the ipi doesn't work. With the immune drugs, the side effects build over time rather than with chemo where it is the worst after you have had your dose. I would think if you've had interferon it will be a breeze ( except for if there is colitis as artie said)
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- April 13, 2015 at 6:53 am
I had 2 doses. An itchy rash but otherwise could get on with my life as normal. Look at getting on to keytruda as soon as possible if the ipi doesn't work. With the immune drugs, the side effects build over time rather than with chemo where it is the worst after you have had your dose. I would think if you've had interferon it will be a breeze ( except for if there is colitis as artie said)
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- April 13, 2015 at 11:43 am
Maybe this is something for you? I don't know if Interferon counts as a systemic treatment though.
https://clinicaltrials.gov/ct2/show/NCT02263508
All the best!
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- April 13, 2015 at 11:43 am
Maybe this is something for you? I don't know if Interferon counts as a systemic treatment though.
https://clinicaltrials.gov/ct2/show/NCT02263508
All the best!
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- April 13, 2015 at 11:43 am
Maybe this is something for you? I don't know if Interferon counts as a systemic treatment though.
https://clinicaltrials.gov/ct2/show/NCT02263508
All the best!
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- April 13, 2015 at 1:16 pm
If you read my posts, I reported on a lot of my husband's experience with ipi at 10 mg. he is NED. Good luck and it can work!
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- April 13, 2015 at 1:16 pm
If you read my posts, I reported on a lot of my husband's experience with ipi at 10 mg. he is NED. Good luck and it can work!
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- April 13, 2015 at 1:16 pm
If you read my posts, I reported on a lot of my husband's experience with ipi at 10 mg. he is NED. Good luck and it can work!
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- April 13, 2015 at 1:30 pm
I had three doses of ipi and started developing a constant headache and my libido plummeted to nonexistent. An MRI to see if brain tumors causing the headaches revealed (after it was re-examined a month later) that my pituitary had more than doubled in size, a condition known as hypophysitis. My immune system was attacking my pituitary. There are several people on this board that have had it happen.
For me I am on a maintenance dose of prednisone as well as testosterone. Its hard to know at this point if it will be a permanent condition or not (one of the factors being surviving the melanoma of course!). But the ipi did stabilize my tumors.
I did have one new tumor show up on my shoulder, so I am now on pembro.
From what I have heard, my ipi side effects are mild compared to interferon.
Best of luck to you – Paul.
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- April 13, 2015 at 1:30 pm
I had three doses of ipi and started developing a constant headache and my libido plummeted to nonexistent. An MRI to see if brain tumors causing the headaches revealed (after it was re-examined a month later) that my pituitary had more than doubled in size, a condition known as hypophysitis. My immune system was attacking my pituitary. There are several people on this board that have had it happen.
For me I am on a maintenance dose of prednisone as well as testosterone. Its hard to know at this point if it will be a permanent condition or not (one of the factors being surviving the melanoma of course!). But the ipi did stabilize my tumors.
I did have one new tumor show up on my shoulder, so I am now on pembro.
From what I have heard, my ipi side effects are mild compared to interferon.
Best of luck to you – Paul.
-
- April 13, 2015 at 1:30 pm
I had three doses of ipi and started developing a constant headache and my libido plummeted to nonexistent. An MRI to see if brain tumors causing the headaches revealed (after it was re-examined a month later) that my pituitary had more than doubled in size, a condition known as hypophysitis. My immune system was attacking my pituitary. There are several people on this board that have had it happen.
For me I am on a maintenance dose of prednisone as well as testosterone. Its hard to know at this point if it will be a permanent condition or not (one of the factors being surviving the melanoma of course!). But the ipi did stabilize my tumors.
I did have one new tumor show up on my shoulder, so I am now on pembro.
From what I have heard, my ipi side effects are mild compared to interferon.
Best of luck to you – Paul.
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- April 13, 2015 at 1:45 pm
Hello,
My husband took the Ipi trial of Ipi 10 mg/kg and GM-CSF and had some side effects but not the colitis. He had a lot of the itching and some fatigue. He has white eyebrows and beard and lost pigmentation of his face down to the collar bone. His first surgery was for a 10.5 mm lesion on the back of his head and his SNB came back no melanoma but he did have 4 more surgeries before he started Ipi. He had lesions in the liver, lungs and an unresectable one on the cervical spine at C1 – C2 that would have left him a paraplegic and about 4 sub q's. We took photo's of the sub q's and with each treatment watch them leave and by the 12 weeks the sub q's were totally gone.
He has been NED for 2 1/2 years now. If you would like to read more check out his profile page.
Judy (loving wife of Gene Stage IV and now NED)
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- April 13, 2015 at 1:45 pm
Hello,
My husband took the Ipi trial of Ipi 10 mg/kg and GM-CSF and had some side effects but not the colitis. He had a lot of the itching and some fatigue. He has white eyebrows and beard and lost pigmentation of his face down to the collar bone. His first surgery was for a 10.5 mm lesion on the back of his head and his SNB came back no melanoma but he did have 4 more surgeries before he started Ipi. He had lesions in the liver, lungs and an unresectable one on the cervical spine at C1 – C2 that would have left him a paraplegic and about 4 sub q's. We took photo's of the sub q's and with each treatment watch them leave and by the 12 weeks the sub q's were totally gone.
He has been NED for 2 1/2 years now. If you would like to read more check out his profile page.
Judy (loving wife of Gene Stage IV and now NED)
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- April 13, 2015 at 1:45 pm
Hello,
My husband took the Ipi trial of Ipi 10 mg/kg and GM-CSF and had some side effects but not the colitis. He had a lot of the itching and some fatigue. He has white eyebrows and beard and lost pigmentation of his face down to the collar bone. His first surgery was for a 10.5 mm lesion on the back of his head and his SNB came back no melanoma but he did have 4 more surgeries before he started Ipi. He had lesions in the liver, lungs and an unresectable one on the cervical spine at C1 – C2 that would have left him a paraplegic and about 4 sub q's. We took photo's of the sub q's and with each treatment watch them leave and by the 12 weeks the sub q's were totally gone.
He has been NED for 2 1/2 years now. If you would like to read more check out his profile page.
Judy (loving wife of Gene Stage IV and now NED)
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- April 13, 2015 at 3:23 pm
I developed moderate colitis after the third infusion. See my prior posts. Not fun, but manageable–and certainly worth the risk given ipi's homerun potential. That said, you should also consider clinical trials (since taking ipi (or any other drug) will, by definition, disqualify you for certain trials in the future. This is true for all of us.) There are some interesting trials combining PD-1 with other drugs. Lastly, see posts from Josh F who is also in the Chicago area and did a trial combining ipi and IL-2. Good luck.
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- April 13, 2015 at 3:23 pm
I developed moderate colitis after the third infusion. See my prior posts. Not fun, but manageable–and certainly worth the risk given ipi's homerun potential. That said, you should also consider clinical trials (since taking ipi (or any other drug) will, by definition, disqualify you for certain trials in the future. This is true for all of us.) There are some interesting trials combining PD-1 with other drugs. Lastly, see posts from Josh F who is also in the Chicago area and did a trial combining ipi and IL-2. Good luck.
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- April 13, 2015 at 5:29 pm
I just finished 4th infusions of Yervoy, had a scan on Saturday and will see my oncologist on Friday to see if I was responder. The only side effect that I had was itchy skin after the first infusion. After that everythin was normal. I am very anxious now waiting for the results -
- April 13, 2015 at 5:29 pm
I just finished 4th infusions of Yervoy, had a scan on Saturday and will see my oncologist on Friday to see if I was responder. The only side effect that I had was itchy skin after the first infusion. After that everythin was normal. I am very anxious now waiting for the results -
- April 13, 2015 at 5:29 pm
I just finished 4th infusions of Yervoy, had a scan on Saturday and will see my oncologist on Friday to see if I was responder. The only side effect that I had was itchy skin after the first infusion. After that everythin was normal. I am very anxious now waiting for the results
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- April 13, 2015 at 3:23 pm
I developed moderate colitis after the third infusion. See my prior posts. Not fun, but manageable–and certainly worth the risk given ipi's homerun potential. That said, you should also consider clinical trials (since taking ipi (or any other drug) will, by definition, disqualify you for certain trials in the future. This is true for all of us.) There are some interesting trials combining PD-1 with other drugs. Lastly, see posts from Josh F who is also in the Chicago area and did a trial combining ipi and IL-2. Good luck.
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