Thyroid Side Effects on Opdivo

This topic has 12 replies, 7 voices, and was last updated 4 years, 7 months ago by Steve33.

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- January 30, 2020 at 8:12 pm
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Steve33
Participant
I’m stage 3B and began on Opdivo in Dec 2019. The blood test 1 month after first fusion showed my thyroid is producing too much T4F. My oncologist referred me to an endocrinologist who said we might have to switch agents if thyroid level doesn’t come down. Symptoms are loss of weight, rapid heart beating, and constantly feeling “on the edge”. I am on a beta blocker to reduce blood pressure ( I am an otherwise very healthy/fit 33 year old). Has anyone had similar issues with Opdivo? How was it managed?

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- - January 30, 2020 at 9:11 pm
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  ed williams
  Participant
  Hi Steve, this link is to ‘Research to Practice’ interview with Dr. Postow of Memorial Sloan Kettering and if you go to the 42 min mark he talks about management of hyperthyroidism which is usually followed by hypothyroidism. You will have to sign up to watch the video, it doesn’t cost anything and they don’t spam you afterwards. Second video is also Dr. Postow talking about both hyypophysitis and hypothyrodism. http://www.researchtopractice.com/DOU119/Video/1?playlistIndex=0#t=42m24s https://www.youtube.com/watch?time_continue=3&v=DgtdOzvmjzw&feature=emb_logo
- - January 31, 2020 at 1:11 am
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  fedupnurse67
  Participant
  I started with Opdivo/Yervoy in September, my TSH was ok the first month, then it dropped to below normal but my T3 and T4 were both ok. TSH remained low for the 2nd month, T3 just above normal, and T4 was normal. TSH in month 3 was above normal, T3 went to normal, T4 was above normal. Month 4 TSH (January) it was completely normal, and T3 and T4 were not checked. January was also my 1st month on just the Opdivo. I get the impression that the TSH can fluctuate greatly while on treatment and its monitored and treated accordingly. I was told to prepare to go on Synthroid as these treatments will pretty much kill the thyroid.
- - January 31, 2020 at 4:57 am
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  tkoss
  Participant
  Much like steve I am 3c and started with Opvido only last week I saw my Onc today. I have nothing to say , there is no pain, no side-effects. By the same token Onc didn’t hint that there could be things like a crashing thyroid. I am expecting rashes, not collapse of my endocrine system. No one has ever said that this is a side effect. I am guessing there are other side effects that only would revel themselves in a in a blood test.
  
  Am I naive thinking he will fully inform me along the way?
  - January 31, 2020 at 10:03 am
    
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    ed williams
    Participant
    
    HI there tkoss, the list of possible side effects is pretty long for Opdivo and endocrine side effects are not at the top of the list but do occur and it is important to be on the look out for possible reactions. If you google opdivo side effects and look at Bristol Myers Squibs own product information you will get a full list and % chance of development of Immune related adverse events(IRAE’s). When, I first started checkmate 067 trial back in 2014 I had to sign off on waiver for side effects that was 3 pages long and every few months as they discovered new ones I would have to sign off on new revised disclaimer form. That being said for most patients nivo is very well tolerated. Best Wishes!!! Ed
  - January 31, 2020 at 10:09 am
    
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    ed williams
    Participant
    
    This is from BMS full product insert. For Opdivo(nivo). http://packageinserts.bms.com/pi/pi_opdivo.pdf
  - January 31, 2020 at 11:58 am
    
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    ed williams
    Participant
    
    This article is from Onclive on the topic of AE’s, I think you might have to join to be able to read the article, but don’t worry it is free and they don’t send you shit afterwards. https://www.onclive.com/web-exclusives/optimal-ae-management-required-with-immunotherapy-in-melanoma?p=1
  - January 31, 2020 at 12:21 pm
    
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    ed williams
    Participant
    
    One last video from ASCO 2018 with Michael Postow of Memorial Sloan Kettering and Dr. Tawbi of MD Anderson on adjuvant toxicity 3A vs 3c patients and also gets into targeted therapy vs immunotherapy patients. https://www.onclive.com/peer-exchange/advanced-melanoma-paradigms/adjuvant-therapy-in-melanoma-safety-and-efficacy
- - January 31, 2020 at 12:57 pm
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  jennifer83
  Participant
  Hey Steve. I’m 36 and Stage IV. I have had 3 infusions of Opdivo/Yervoy and going to have my 4th tomorrow. I’ve tolerated treatment very well with minimal side effects. I had bloodwork done yesterday and it came back that I have hypothyroidism. The nurse mentioned that previous bloodwork leaned to mild hyperthyroidism and that it often then tips over to hypo down the line in treatment. They’re putting on medication to iron this out – I wouldn’t have known about it if it weren’t for the bloodwork as I don’t feel symptomatic yet.
  
  Good luck to you…. !
  - January 31, 2020 at 1:32 pm
    
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    Steve33
    Participant
    
    Thanks all for the response. All of the responses seem to agree with what I’ve read in that Opdivo can cause a brief period of hyperthyroidism but normally it’s followed by hypothyroidism.
    
    Has anyone not transitioned from hyperthyroidism to hypothyroidism? Is there a treatment for hyperthyroidism caused by Opdivo? Everything I read about managing this side effect has to do with hypothyroidism. Has anyone had to pause or stop treatment from Opdivo to hyperthyroidism?
  - February 4, 2020 at 7:56 pm
    
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    Threefitty
    Participant
    
    I was prescribed 75mg levothyroxine by about month 4 of a year of Opdivo. By month 12 and since, at 200 mg./day. I think my thyroid may be just shot. There may have been some edginess along the way as described elsewhere, but mostly I doubt I would have reported anything and it was only learned by blood test. Got lots of head’s up about expecting it so no surprise. Always made a positive association with the drug doing something, anything as I had no other side effects to speak of.
- - February 24, 2020 at 5:17 pm
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  almostalice
  Participant
  Gosh this sounds awful.
  
  I’ve had no treatment for melanoma other than surgery. A out 5 years after my diagnosis I got severely fatigued and freaked out. My TSH was 56 … (Not 5.6). I had to stop working and go on disability.
  
  Diagnosed hashimotos. Trust me I know all too well about hypothyroidism, my resting heart rate dropped to below 60BPM. Stick with the thyroxine if you go hypo.
  - April 28, 2020 at 2:09 am
    
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    Steve33
    Participant
    
    Just following up from my original post, I did eventually turn to hypothyroid. I am now taking 100mg levothyroxine and will continue to monitor. Doctors won’t commit to saying if it’s permanent or temporary.