hypothyroidism and few questions

I took nivo/Opdivo from Dec 2010 to June of 2013 in a 2 1/2 year nivo/vaccine trial and remain NED.  I did have rashes and arthralgias (joint pain) but not usually significantly during the infusion.  Many patients in my trial developed mucositis (irritation and dryness of the mouth).  I certainly had a very dry mouth after every infusion and went on to develop significant mouth ulcers….though I was the only one in my trial to do that.  Hopefully, you won't do that!!!  Initially, what made my mouth feel better was lemonade!!  Sounds crazy, but it really helped.  Later with the actual ulcers spicy and acidic foods were a no go…but with the dry mouth, I found it to be a good thing.  Later in the course of my mouth problems, my dentist recommended Biotene oral products.  By then I was having more of a problem with ulcers than a dry mouth so I never used them….don't know if they would help you or not, but you might give them a try.  He also gave me lidocaine lolly pops for superficial pain control.  I mention it only because it caused an increased heart rate which was uncomfortable and made them NOT worth it….and if you are already having some tachycardia….they may not be the best thing for you if they are ever suggested.  Sorry you are dealing with endocrine issues/hypothyroidism as well.  But, since your doc has started you on medications you should level out and start feeling better soon.  Getting that under control may even help with the dry mouth!  Congrats on the reduction in the tumor burden!!!  That's really great!  celeste

I took nivo/Opdivo from Dec 2010 to June of 2013 in a 2 1/2 year nivo/vaccine trial and remain NED.  I did have rashes and arthralgias (joint pain) but not usually significantly during the infusion.  Many patients in my trial developed mucositis (irritation and dryness of the mouth).  I certainly had a very dry mouth after every infusion and went on to develop significant mouth ulcers….though I was the only one in my trial to do that.  Hopefully, you won't do that!!!  Initially, what made my mouth feel better was lemonade!!  Sounds crazy, but it really helped.  Later with the actual ulcers spicy and acidic foods were a no go…but with the dry mouth, I found it to be a good thing.  Later in the course of my mouth problems, my dentist recommended Biotene oral products.  By then I was having more of a problem with ulcers than a dry mouth so I never used them….don't know if they would help you or not, but you might give them a try.  He also gave me lidocaine lolly pops for superficial pain control.  I mention it only because it caused an increased heart rate which was uncomfortable and made them NOT worth it….and if you are already having some tachycardia….they may not be the best thing for you if they are ever suggested.  Sorry you are dealing with endocrine issues/hypothyroidism as well.  But, since your doc has started you on medications you should level out and start feeling better soon.  Getting that under control may even help with the dry mouth!  Congrats on the reduction in the tumor burden!!!  That's really great!  celeste

I took nivo/Opdivo from Dec 2010 to June of 2013 in a 2 1/2 year nivo/vaccine trial and remain NED.  I did have rashes and arthralgias (joint pain) but not usually significantly during the infusion.  Many patients in my trial developed mucositis (irritation and dryness of the mouth).  I certainly had a very dry mouth after every infusion and went on to develop significant mouth ulcers….though I was the only one in my trial to do that.  Hopefully, you won't do that!!!  Initially, what made my mouth feel better was lemonade!!  Sounds crazy, but it really helped.  Later with the actual ulcers spicy and acidic foods were a no go…but with the dry mouth, I found it to be a good thing.  Later in the course of my mouth problems, my dentist recommended Biotene oral products.  By then I was having more of a problem with ulcers than a dry mouth so I never used them….don't know if they would help you or not, but you might give them a try.  He also gave me lidocaine lolly pops for superficial pain control.  I mention it only because it caused an increased heart rate which was uncomfortable and made them NOT worth it….and if you are already having some tachycardia….they may not be the best thing for you if they are ever suggested.  Sorry you are dealing with endocrine issues/hypothyroidism as well.  But, since your doc has started you on medications you should level out and start feeling better soon.  Getting that under control may even help with the dry mouth!  Congrats on the reduction in the tumor burden!!!  That's really great!  celeste

Sort of with the leg pain. I was on opdivo from May 11 to late August. Then was off for six weeks. Two days after that dose I woke up in the middle of the night with massive leg pain in the front of my lower knees and upper legs. Not the back of my legs. Very weird and it wouldn't stop and was driving me crazy. Doc said it was my tumors pains. So started the awful opioed pain meds. But that is another story. I had also had keytruda for about a year before May 11.

Artie

Sort of with the leg pain. I was on opdivo from May 11 to late August. Then was off for six weeks. Two days after that dose I woke up in the middle of the night with massive leg pain in the front of my lower knees and upper legs. Not the back of my legs. Very weird and it wouldn't stop and was driving me crazy. Doc said it was my tumors pains. So started the awful opioed pain meds. But that is another story. I had also had keytruda for about a year before May 11.

Artie

Sort of with the leg pain. I was on opdivo from May 11 to late August. Then was off for six weeks. Two days after that dose I woke up in the middle of the night with massive leg pain in the front of my lower knees and upper legs. Not the back of my legs. Very weird and it wouldn't stop and was driving me crazy. Doc said it was my tumors pains. So started the awful opioed pain meds. But that is another story. I had also had keytruda for about a year before May 11.

Artie

I became hypothyroid and had crazy dry mouth when on interferon. Thyroid can take a while to get in check, once your blood work gets back to normal, it can still take a fee weeks to actually feEl better. One suggestion, I have been having really bad fatigue recently but my thyroid levels were all looking good, we finally figured out that I’m iron deficient. I’m on heave prescription iron supplements now, and I feel like it’s helping. For dry mouth, my dentist recommended this gum called mighteaflow and it really helped. Hope that helps!

I became hypothyroid and had crazy dry mouth when on interferon. Thyroid can take a while to get in check, once your blood work gets back to normal, it can still take a fee weeks to actually feEl better. One suggestion, I have been having really bad fatigue recently but my thyroid levels were all looking good, we finally figured out that I’m iron deficient. I’m on heave prescription iron supplements now, and I feel like it’s helping. For dry mouth, my dentist recommended this gum called mighteaflow and it really helped. Hope that helps!

I became hypothyroid and had crazy dry mouth when on interferon. Thyroid can take a while to get in check, once your blood work gets back to normal, it can still take a fee weeks to actually feEl better. One suggestion, I have been having really bad fatigue recently but my thyroid levels were all looking good, we finally figured out that I’m iron deficient. I’m on heave prescription iron supplements now, and I feel like it’s helping. For dry mouth, my dentist recommended this gum called mighteaflow and it really helped. Hope that helps!