› Forums › General Melanoma Community › Immunotherapy side effects
- This topic has 27 replies, 5 voices, and was last updated 8 years ago by
Eileensulliv.
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- April 6, 2016 at 12:28 am
My son finished immunotherapy in January, and current scans are clear. However, along the way he has lost the function of his thyroid, on synthroid. Now he is currently experiencing side effects with his pancreas and my be developing type 1 diabetes. My question is, what otehr side effects might we encounter, anyone else having trouble with their pancreas? We are so happy that the disease is gone but these setbacks are taking a toll on moral. Thanks
- Replies
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- April 6, 2016 at 6:01 am
Hi there,
so pleased treatment has worked for your son. What treatment had he had and what stage was he with his melanoma.
i am sure you will get some response on guys who have had immunatherapy treatments. I have had ipilumab which effect my thyroid after completing it. We watched and waited had regular blood test and eventually came back to normal after 6 months .
so pleased treatment has worked for your son
scooby123❤️
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- April 6, 2016 at 6:01 am
Hi there,
so pleased treatment has worked for your son. What treatment had he had and what stage was he with his melanoma.
i am sure you will get some response on guys who have had immunatherapy treatments. I have had ipilumab which effect my thyroid after completing it. We watched and waited had regular blood test and eventually came back to normal after 6 months .
so pleased treatment has worked for your son
scooby123❤️
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- April 6, 2016 at 6:01 am
Hi there,
so pleased treatment has worked for your son. What treatment had he had and what stage was he with his melanoma.
i am sure you will get some response on guys who have had immunatherapy treatments. I have had ipilumab which effect my thyroid after completing it. We watched and waited had regular blood test and eventually came back to normal after 6 months .
so pleased treatment has worked for your son
scooby123❤️
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- April 7, 2016 at 1:15 am
Hi, happy to hear it came back(thyroid), gives me hope. He had mestastic melanoma, First diagnosed three years ago with stage III.
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- April 7, 2016 at 1:15 am
Hi, happy to hear it came back(thyroid), gives me hope. He had mestastic melanoma, First diagnosed three years ago with stage III.
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- April 7, 2016 at 1:15 am
Hi, happy to hear it came back(thyroid), gives me hope. He had mestastic melanoma, First diagnosed three years ago with stage III.
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- April 6, 2016 at 2:24 pm
Hey Michele,
Sorry your son has had to deal with melanoma and now side effects as well!! It doesn't seem fair does it??? Anyhow, sadly…immune related side effects (irSE and irAE's) can be very difficult. I know you look at it occasionally…but there are many posts that address such adverse events on my blog. You can use the search bubble in the top left corner if you'd like. Here is a recent post that contains several artcles speaking to those side effects as well as links to additional ones. BUT!!!!! I am not putting this out to frighten anyone! As I noted in the post itself…compared to many cancer treatments….immunotherapy is pretty benign for most….esp the anti-PD1 products (Keytruda and Opdivo). Still….I think it is important for all of us to know what can happen and seek help if any changes occur for us that are worrisome. As in most things, the sooner side effects are noted and treated, the less damage they will do.
Yours, Celeste
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- April 7, 2016 at 1:23 am
Dear Celeste,
Thank you for your response, I have been reading your blog for months now. I even have a file of your data. The thing is that they are saying that the new diagnosis(diabetes) isn't necessarily due to the drugs(I can't say I agree with them). This is my way of trying to see how others are doing. His first diagnosis we listened solely to the doctors and we were unprepared for the reappearance; not this time. He is too young(28 this April), I am not ready to lose him. Thanks for all you do.
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- April 7, 2016 at 12:55 pm
I know you do and just wish I could offer more help! After all he (and you) have been through, I don't blame you for considering the immunotherapy as a source of his current problems. For a long time when I saw strange, 'individual' reports of this problem or that, after (or during) immunotherapy, I didn't post them….considering them just a fluke. But, as time has gone on…their prevalence has become more clear and I figured folks should at least be aware. I'll let you know if I come across anything more specific to the pancreas. Meanwhile perhaps anyone dealing with similar symptoms will respond here. I would be searching for answers and help for my kids as well! I can't begin to imagine dealing with this via a child! Hopfully your son's problems can be controlled very soon….whatever the docs believe their origin may be! Yours, c
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- April 7, 2016 at 12:55 pm
I know you do and just wish I could offer more help! After all he (and you) have been through, I don't blame you for considering the immunotherapy as a source of his current problems. For a long time when I saw strange, 'individual' reports of this problem or that, after (or during) immunotherapy, I didn't post them….considering them just a fluke. But, as time has gone on…their prevalence has become more clear and I figured folks should at least be aware. I'll let you know if I come across anything more specific to the pancreas. Meanwhile perhaps anyone dealing with similar symptoms will respond here. I would be searching for answers and help for my kids as well! I can't begin to imagine dealing with this via a child! Hopfully your son's problems can be controlled very soon….whatever the docs believe their origin may be! Yours, c
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- April 7, 2016 at 12:55 pm
I know you do and just wish I could offer more help! After all he (and you) have been through, I don't blame you for considering the immunotherapy as a source of his current problems. For a long time when I saw strange, 'individual' reports of this problem or that, after (or during) immunotherapy, I didn't post them….considering them just a fluke. But, as time has gone on…their prevalence has become more clear and I figured folks should at least be aware. I'll let you know if I come across anything more specific to the pancreas. Meanwhile perhaps anyone dealing with similar symptoms will respond here. I would be searching for answers and help for my kids as well! I can't begin to imagine dealing with this via a child! Hopfully your son's problems can be controlled very soon….whatever the docs believe their origin may be! Yours, c
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- April 7, 2016 at 1:23 am
Dear Celeste,
Thank you for your response, I have been reading your blog for months now. I even have a file of your data. The thing is that they are saying that the new diagnosis(diabetes) isn't necessarily due to the drugs(I can't say I agree with them). This is my way of trying to see how others are doing. His first diagnosis we listened solely to the doctors and we were unprepared for the reappearance; not this time. He is too young(28 this April), I am not ready to lose him. Thanks for all you do.
-
- April 7, 2016 at 1:23 am
Dear Celeste,
Thank you for your response, I have been reading your blog for months now. I even have a file of your data. The thing is that they are saying that the new diagnosis(diabetes) isn't necessarily due to the drugs(I can't say I agree with them). This is my way of trying to see how others are doing. His first diagnosis we listened solely to the doctors and we were unprepared for the reappearance; not this time. He is too young(28 this April), I am not ready to lose him. Thanks for all you do.
-
- April 6, 2016 at 2:24 pm
Hey Michele,
Sorry your son has had to deal with melanoma and now side effects as well!! It doesn't seem fair does it??? Anyhow, sadly…immune related side effects (irSE and irAE's) can be very difficult. I know you look at it occasionally…but there are many posts that address such adverse events on my blog. You can use the search bubble in the top left corner if you'd like. Here is a recent post that contains several artcles speaking to those side effects as well as links to additional ones. BUT!!!!! I am not putting this out to frighten anyone! As I noted in the post itself…compared to many cancer treatments….immunotherapy is pretty benign for most….esp the anti-PD1 products (Keytruda and Opdivo). Still….I think it is important for all of us to know what can happen and seek help if any changes occur for us that are worrisome. As in most things, the sooner side effects are noted and treated, the less damage they will do.
Yours, Celeste
-
- April 6, 2016 at 2:24 pm
Hey Michele,
Sorry your son has had to deal with melanoma and now side effects as well!! It doesn't seem fair does it??? Anyhow, sadly…immune related side effects (irSE and irAE's) can be very difficult. I know you look at it occasionally…but there are many posts that address such adverse events on my blog. You can use the search bubble in the top left corner if you'd like. Here is a recent post that contains several artcles speaking to those side effects as well as links to additional ones. BUT!!!!! I am not putting this out to frighten anyone! As I noted in the post itself…compared to many cancer treatments….immunotherapy is pretty benign for most….esp the anti-PD1 products (Keytruda and Opdivo). Still….I think it is important for all of us to know what can happen and seek help if any changes occur for us that are worrisome. As in most things, the sooner side effects are noted and treated, the less damage they will do.
Yours, Celeste
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- April 7, 2016 at 7:04 pm
Hi Michele,
Immunotherapy saved my life but there were side effects:
* permanent hypophysitis (pituitary only partially works)
* permanent adrenal insufficiency (adrenal gland attacked)
* permanent hypothyroidism (thyroid shot)
* permanent type 1 diabetesImmunotherapy "takes the brakes off" your immune system, but it does nothing to alter its selectivity. So in my case both the cancer and a large portion of my endocrine system were attacked.
At first my oncologist did not think my increasingly hard to control blood sugar had anything to do with the treatment. It wasn't until I found a top notch endocrinologist, who tested me for specific antibodies that showed each of the above glands had been attacked, that I was able to convince my oncologist that my (now type 1) diabetes was the result of immunotherapy.
The good news all of it is totally manageable, but the key is finding a good endocrinologist.
I am more than happy to answer any other questions you might have as best I can.
Wishing you and your son the best – Paul
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- April 7, 2016 at 7:04 pm
Hi Michele,
Immunotherapy saved my life but there were side effects:
* permanent hypophysitis (pituitary only partially works)
* permanent adrenal insufficiency (adrenal gland attacked)
* permanent hypothyroidism (thyroid shot)
* permanent type 1 diabetesImmunotherapy "takes the brakes off" your immune system, but it does nothing to alter its selectivity. So in my case both the cancer and a large portion of my endocrine system were attacked.
At first my oncologist did not think my increasingly hard to control blood sugar had anything to do with the treatment. It wasn't until I found a top notch endocrinologist, who tested me for specific antibodies that showed each of the above glands had been attacked, that I was able to convince my oncologist that my (now type 1) diabetes was the result of immunotherapy.
The good news all of it is totally manageable, but the key is finding a good endocrinologist.
I am more than happy to answer any other questions you might have as best I can.
Wishing you and your son the best – Paul
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- April 7, 2016 at 7:04 pm
Hi Michele,
Immunotherapy saved my life but there were side effects:
* permanent hypophysitis (pituitary only partially works)
* permanent adrenal insufficiency (adrenal gland attacked)
* permanent hypothyroidism (thyroid shot)
* permanent type 1 diabetesImmunotherapy "takes the brakes off" your immune system, but it does nothing to alter its selectivity. So in my case both the cancer and a large portion of my endocrine system were attacked.
At first my oncologist did not think my increasingly hard to control blood sugar had anything to do with the treatment. It wasn't until I found a top notch endocrinologist, who tested me for specific antibodies that showed each of the above glands had been attacked, that I was able to convince my oncologist that my (now type 1) diabetes was the result of immunotherapy.
The good news all of it is totally manageable, but the key is finding a good endocrinologist.
I am more than happy to answer any other questions you might have as best I can.
Wishing you and your son the best – Paul
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- April 9, 2016 at 5:51 pm
I started immunotherapy in Feb. 2015 on the ipi/nivo trial. I tolerated one dose of the combo, and continued on just nivo until Feb 2016, when I was diagnosed with diabetes. It is believed I'm actually type 2 though, although more antibody tests have been ordered as my blood sugar is still not under control. Ive been on insulin shots trying to find the right dose. I've changed my diet, get 30 units injected twice a day, have started exercising more, and still my blood sugar has only come down into the 100's a few times, it usually stays in the 200's. At least I'm not seeing in the 400's anymore! Although there is a chance my unhealthy habits might have caused diabetes in me in the long run, my oncologist and endocrinologist feel the nivo launched me right into it. I had a very acute onset… Was fine on one Sunday, and the next morning I could hardly keep myself together! Until we can get my blood sugar down on a regular basis, I'm not getting anymore nivo treatments.
The other side effects I had were diarrhea, itchy hands and feet (skin peeled a couple times… It was like getting a fresh mani/pedi when it was done peeling!), hypothyroidism, hair thinned (but grew back, with a little white patch of vitiligo), fatigue (still worked 40 hour work weeks though), and allergic reactions to things I never had any allergies to before immunotherapy. I don't have the diarrhea or itchy hands anymore, they only lasted a few months.
The side effects and set backs do take their toll… I was told I was NED in December, but my February scans showed two new nodules in my middle right lung. Doc says they could be from slight infection, but I hadn't been sick. And at the same time, I had to stop nivo because of the diabetes. I've been quite nervous about those two nodules, and have a scan on Thursday to see if they are still there. I've been withdrawn and emotional at times, but try to keep a positive attitude! I wish you and your son the best!
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- April 9, 2016 at 5:51 pm
I started immunotherapy in Feb. 2015 on the ipi/nivo trial. I tolerated one dose of the combo, and continued on just nivo until Feb 2016, when I was diagnosed with diabetes. It is believed I'm actually type 2 though, although more antibody tests have been ordered as my blood sugar is still not under control. Ive been on insulin shots trying to find the right dose. I've changed my diet, get 30 units injected twice a day, have started exercising more, and still my blood sugar has only come down into the 100's a few times, it usually stays in the 200's. At least I'm not seeing in the 400's anymore! Although there is a chance my unhealthy habits might have caused diabetes in me in the long run, my oncologist and endocrinologist feel the nivo launched me right into it. I had a very acute onset… Was fine on one Sunday, and the next morning I could hardly keep myself together! Until we can get my blood sugar down on a regular basis, I'm not getting anymore nivo treatments.
The other side effects I had were diarrhea, itchy hands and feet (skin peeled a couple times… It was like getting a fresh mani/pedi when it was done peeling!), hypothyroidism, hair thinned (but grew back, with a little white patch of vitiligo), fatigue (still worked 40 hour work weeks though), and allergic reactions to things I never had any allergies to before immunotherapy. I don't have the diarrhea or itchy hands anymore, they only lasted a few months.
The side effects and set backs do take their toll… I was told I was NED in December, but my February scans showed two new nodules in my middle right lung. Doc says they could be from slight infection, but I hadn't been sick. And at the same time, I had to stop nivo because of the diabetes. I've been quite nervous about those two nodules, and have a scan on Thursday to see if they are still there. I've been withdrawn and emotional at times, but try to keep a positive attitude! I wish you and your son the best!
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- April 9, 2016 at 10:42 pm
Eileen I am really sorry to hear about the new lung nodules.
Are you taking 30 units twice per day? That is a lot. How about long lasting insulin? I am on both (humalog and lantus)? Are you on any steroids? They drastically increase the amount of insulin required.
– Paul
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- April 9, 2016 at 10:42 pm
Eileen I am really sorry to hear about the new lung nodules.
Are you taking 30 units twice per day? That is a lot. How about long lasting insulin? I am on both (humalog and lantus)? Are you on any steroids? They drastically increase the amount of insulin required.
– Paul
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- April 10, 2016 at 8:53 pm
Hi Paul! I am on Lantus 30 units twice per day… It is a lot, from what I hear, but I am hopeful I can come off the insulin eventually and just control with my diet. That is, if this indeed type 2!
I am not normally on steroids unless I'm about to have a CT scan with contrast. Since on nivo, I have been having delayed reactions to the CT scan contrast… So they have been pre medicating me with prednisone for the last two scans. I am having another scan Thursday, and they have increased the dosage of prednisone, since I still had reactions the last two scans. I have to start taking the prednisone on Monday and continue through to two hours before my scan, so I'm sure this will mess with my blood sugar a LOT! I am very nervous about this, but really hopeful for some good news from this scan!
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- April 10, 2016 at 8:53 pm
Hi Paul! I am on Lantus 30 units twice per day… It is a lot, from what I hear, but I am hopeful I can come off the insulin eventually and just control with my diet. That is, if this indeed type 2!
I am not normally on steroids unless I'm about to have a CT scan with contrast. Since on nivo, I have been having delayed reactions to the CT scan contrast… So they have been pre medicating me with prednisone for the last two scans. I am having another scan Thursday, and they have increased the dosage of prednisone, since I still had reactions the last two scans. I have to start taking the prednisone on Monday and continue through to two hours before my scan, so I'm sure this will mess with my blood sugar a LOT! I am very nervous about this, but really hopeful for some good news from this scan!
-
- April 10, 2016 at 8:53 pm
Hi Paul! I am on Lantus 30 units twice per day… It is a lot, from what I hear, but I am hopeful I can come off the insulin eventually and just control with my diet. That is, if this indeed type 2!
I am not normally on steroids unless I'm about to have a CT scan with contrast. Since on nivo, I have been having delayed reactions to the CT scan contrast… So they have been pre medicating me with prednisone for the last two scans. I am having another scan Thursday, and they have increased the dosage of prednisone, since I still had reactions the last two scans. I have to start taking the prednisone on Monday and continue through to two hours before my scan, so I'm sure this will mess with my blood sugar a LOT! I am very nervous about this, but really hopeful for some good news from this scan!
-
- April 9, 2016 at 10:42 pm
Eileen I am really sorry to hear about the new lung nodules.
Are you taking 30 units twice per day? That is a lot. How about long lasting insulin? I am on both (humalog and lantus)? Are you on any steroids? They drastically increase the amount of insulin required.
– Paul
-
- April 9, 2016 at 5:51 pm
I started immunotherapy in Feb. 2015 on the ipi/nivo trial. I tolerated one dose of the combo, and continued on just nivo until Feb 2016, when I was diagnosed with diabetes. It is believed I'm actually type 2 though, although more antibody tests have been ordered as my blood sugar is still not under control. Ive been on insulin shots trying to find the right dose. I've changed my diet, get 30 units injected twice a day, have started exercising more, and still my blood sugar has only come down into the 100's a few times, it usually stays in the 200's. At least I'm not seeing in the 400's anymore! Although there is a chance my unhealthy habits might have caused diabetes in me in the long run, my oncologist and endocrinologist feel the nivo launched me right into it. I had a very acute onset… Was fine on one Sunday, and the next morning I could hardly keep myself together! Until we can get my blood sugar down on a regular basis, I'm not getting anymore nivo treatments.
The other side effects I had were diarrhea, itchy hands and feet (skin peeled a couple times… It was like getting a fresh mani/pedi when it was done peeling!), hypothyroidism, hair thinned (but grew back, with a little white patch of vitiligo), fatigue (still worked 40 hour work weeks though), and allergic reactions to things I never had any allergies to before immunotherapy. I don't have the diarrhea or itchy hands anymore, they only lasted a few months.
The side effects and set backs do take their toll… I was told I was NED in December, but my February scans showed two new nodules in my middle right lung. Doc says they could be from slight infection, but I hadn't been sick. And at the same time, I had to stop nivo because of the diabetes. I've been quite nervous about those two nodules, and have a scan on Thursday to see if they are still there. I've been withdrawn and emotional at times, but try to keep a positive attitude! I wish you and your son the best!
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