› Forums › General Melanoma Community › Curious Side Effects Ipi/Nivo
- This topic has 3 replies, 3 voices, and was last updated 7 years, 9 months ago by
Bubbles.
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- August 24, 2017 at 2:23 pm
Hi All,
I was diagnosed with metastatic melanoma in April 2017. I had a 8x6cm mass on my left adrenal gland and a 1.3cm nodule on my right lower lung lobe (according to the PET scan just before treatments started.) I'm also hypertensive which I take lispro, and type 2 diabetic which I take insulin. I was able to make all 4 treatments and really the only side effect I went through during treatments was fatigue. At 3 weeks after the final infusion I had a 2nd PET scan which showed the adrenal mass had reduced to 4.5x3cm and no change in the lung nodule. A day or 2 after that PET scan I started having some bad side effects… extreme fatigue, muscle and joints sore to the point I didn't have full mobility, diarrhea, lost normal taste, and now produce almost no saliva. On top of that without changing my meds or usuall diet I went hypoglycemic 3 times and found my blood pressure had dropped to 107/54 (probably the cause of the extreme fatigue). My oncologist put me on Prenisolone 5 day pack and by the end I felt better than I had in months… seems everything cleared up except for the taste and saliva production. The night after the pack was finished my blood pressure dropped again, and 2 days after all the symptoms came back with fever and chills added. For some reason he seems adverse to keeping me on the steroids. Has anyone had these type of symptoms? What did your onc. do for it?
Thanks for any input!
Steven
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- August 24, 2017 at 2:58 pm
Hi Smyers 5015, depending on the experience level of your Oncologist you might want to get a referral to an endocrinologist. Ipi/nivo can mess up the thyroid and pituitary gland so some times you might need a brain scan and some one who is an expert on the endocrine system. Is your Oncologist a melanoma special ? finally you might want to ask him/her how many people they have treated with the combination before you. Best Wishes!!!Ed
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- August 24, 2017 at 3:09 pm
Steven… It definitely sounds like you're having autoimmune reaction to the immuno meds. While Prednisone will work for knocking those back, it will also increase your glucose levels. I'm taking a wild stabbing guess that you oncologist would like to keep the steroids as minimal in duration as possible, to avoid any additional complications that might be created with your diabetes. Since you went hypoglycemic, along with the other autoimmune reations, the Pred probably helped balance you out again. You may need additional short term steroid use, with close monitoring, to ensure you don't fix one problem, but exacerbate another.
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- August 24, 2017 at 7:31 pm
Hi Steven,
Niki and Ed make good points. Immunotherapy can certainly create havoc for our endocrine function…which may be even more of a problem for you if your adrenal tumor is affecting the function of your adrenal gland. I think consultation with an endocrinologist may be a very important thing for you.
Don't make yourself nuts by looking at these, but I've been keeping tabs on the more unusual side effects of immunotherapy for several years now. It you are interested, here's a link (with many more within): https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/07/side-effects-of-immunotherapy-part-9.html
As to the dry mouth and taste issues – I took nivo (Opdivo) from Dec of 2010 until June of 2013. I experienced dry mouth and weird taste issues almost from the start. I went on to develop significant mouth ulcers. At the time, there was very little documented about the side effect. Since then, it has made it into the literature, though it is not terribly common, quite a few of us have been affected. Once being off the meds, things gradually became better. I rarely have lesions now (and they are never as bad as they were) and my taste is pretty much back to normal. The issue of dry mouth hasn't really changed. Unfortunately, despite trying many oral preparations (lidocaine, nystatin, various oral rinses and mouth wash) nothing was terribly effective, so I don't have any great advice to help you. But, I'm still here, so it is a small price to pay.
However, your other issues could be due to something much more important and also possibly treatable with hormone or cortisol replacement if decreased endocrine function is the cause.
Hope this helps. I wish you well. Celeste
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