Eileensulliv

March 2nd I just finished my two years of Nivolumab treatments, and am currently NED… I developed vitiligo in a few spots about a year into my treatments. Literally from the top of my head to my feet, but really only a few spots… and I'm so fair, it's hard to see at first. Best wishes!

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. 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. 

I am sorry you are going through this, and I wish the very best for you!

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. 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. 

I am sorry you are going through this, and I wish the very best for you!

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. 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. 

I am sorry you are going through this, and I wish the very best for you!

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!

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!

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!

What a wonderful post! So happy for you both! Thank you for sharing!

What a wonderful post! So happy for you both! Thank you for sharing!

What a wonderful post! So happy for you both! Thank you for sharing!

Hi Neil,

I'm sorry you are going through this! I know how angry and scared I get at times, as I'm sure many on this board can relate. I know others have better medical advice than I do usually, but I can tell you that a friend of mine did receive treatment at the same place as you (different type of cancer) and she is now cancer free for a few years. She speaks highly of the care she received. It is best that you see a melanoma specialist. I really hope you beat this!

On a side note, I am not too far from you, as I am in Montgomery County, MD. I see Dr. Sharfman at Johns Hopkins for Stage IV. I was on the ipi/nivo trial, but trial closed and I was receiving just nivo until two weeks ago, due to complications. Hopefully will start again soon!

Hi Neil,

I'm sorry you are going through this! I know how angry and scared I get at times, as I'm sure many on this board can relate. I know others have better medical advice than I do usually, but I can tell you that a friend of mine did receive treatment at the same place as you (different type of cancer) and she is now cancer free for a few years. She speaks highly of the care she received. It is best that you see a melanoma specialist. I really hope you beat this!

On a side note, I am not too far from you, as I am in Montgomery County, MD. I see Dr. Sharfman at Johns Hopkins for Stage IV. I was on the ipi/nivo trial, but trial closed and I was receiving just nivo until two weeks ago, due to complications. Hopefully will start again soon!

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!

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!

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!