› Forums › General Melanoma Community › Rare immunotherapy side effect
- This topic has 7 replies, 5 voices, and was last updated 5 years, 6 months ago by
Zelda_Scotland.
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- March 21, 2019 at 1:46 am
We met with our oncologist to talk about my husband's bone marrow biopsy results and lots of recent blood work! He has two serious but normal immunotherapy side effects and one crazy rare side effect. End result is, of course, high-dose steroids (and also beta blockers to lower his racing heart rate). But I thought I'd put down these side effects here since I hadn't seen the bone marrow failure one on MPIP when I searched. If somebody else someday faces this, hopefully they will find this post.
1. Hyperthyroidism. Believed to be causing the fatigue and racing heart. Beta blockers to lower heart rate. Also a referral to an endocrinologist. This just popped up this week in the blood work.
2. Liver inflammation/hepatitis. Being treated with high-dose prednisone over the next two weeks. Also a referral to a liver specialist.
3. Panhypoplasia/aplastic anemia (bone marrow failure). This is a really rare side effect. Only a couple case studies of 3-4 patients who've developed this. But of course my husband got it! And he was even on low-dose ipi! The hope is that the high-dose prednisone and no more immunotherapy will resolve this. But he'll be getting weekly blood work as well as transfusions if necessary. If the blood counts don't stabilize or improve, our oncologist has already made a blood specialist aware of my husband's case and they'll send my husband to the blood specialist for more treatment. This could be due to the immune system 'attacking' the bone marrow, or possibly the liver inflammation is causing it.
My husband has also recenty started to hear ringing and lose some hearing in his right ear. This preceded his original diagnosis of a 3 cm brain tumour. So he's getting another MRI next week to check on his brain (he had one about a month and a half ago).
In the meantime he has lost three pounds in a week and is very sleepy. I hope the prednisone works its magic on him and also that the MRI next week shows some benign or immunotherapy-related reason for the hearing loss, and not another growing or new tumour.
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- March 21, 2019 at 11:48 am
Hi Cjm22, did they do surgery on the brain met to remove it? Thanks for sharing the rare side effect, they do show up from time to time during early days of trials but not as often lately!!! Best Wishes!!!Ed
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- March 21, 2019 at 8:34 pm
Yeah it's crazy! The oncologists at our cancer agency (the major cancer research center in our province, in one of Canada's biggest cities) have never encountered this before.
The really big brain met showed up in February 2018, and yes, it was surgically removed at that time. My husband (boyfriend back then) had extremely bad headaches and hearing loss and tinnitus in one ear for about 6 weeks before a doctor finally took him seriously (at the ER) and the CT scan showed the masses in his brain. That's what started the whole diagnosis. Since then he's had whole brain radiation once in February 2018 and stereotactic radiation twice to several different smaller masses in his brain (the most recent time was about 5 weeks ago now).
After the surgery last February, the hearing problems went away. So we're a little nervous that the hearing problems have come back. He doesn't have any other new neuro symptoms, though — no headaches or anything. I've also read that sometimes hearing loss and tinnitus can be a symptom of serious thyroid issues, so my fingers are crossed that it's related to his thyroid and not to new or growing brain mets.
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- March 21, 2019 at 1:27 pm
So sorry that you and your husband are doing with all of this. Hopefully the oncs and specialists will get him patched up and feeling better quickly.
Here are some articles (or at least abstracts) that may be moot at this point, but if you are interested:
From 2017 – https://www.ejcancer.com/article/S0959-8049(17)30881-X/fulltext
Also 2017 – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5528855/
Paper on how to manage bone marrow suppression caused by treatment generally: https://sarahcannon.com/hl/?/32728/Managing-the-Side-Effects-of-Myelodysplastic-Syndrome–MDS–and-MDS-Treatment
Two posts with an algorithm for managing side effects just for your edification:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/05/neurologic-side-effects-to.html
All of this is probably stuff you and your docs know at this point…but…
Wishing you both my best. Celeste
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- March 21, 2019 at 8:37 pm
Thank you so much!!!! You are a wizard!! I will read this all carefully! I was having trouble finding much about this stuff! The oncologists here are definitely taking it seriously but it's a new side effect to them. Their plan right now is to put him on the prednisone and beta blockers, check his blood work again in a week and see what's up then. The blood specialist says that my husband's blood counts are not dangerously low so he does not want to add any other treatments unless the prednisone doesn't work after a couple weeks or the blood counts continue to decrease.
My husband apparently responded well to the blood transfusion and his hemoglobin is up again 4 days after the transfusion, although that didn't do very much to help his fatigue or other symptoms at all.
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- March 22, 2019 at 10:52 pm
I'm so sorry to hear you guys are being put through the wringer, when the prednisone kicks in he'll be a different man, I couldn't sleep for more than 3hrs a night, started on 75mg and it took 6 weeks to wind me back down.
Sounds like you're in good hands, your onc doesn't hold back in dragging in other specialists, you'll be virtually living in the agency/hospital.
Good luck, my thoughts are with you both
Tony
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- March 23, 2019 at 11:54 pm
Thanks, Tony. The prednisone seems to be working a little bit already — less fatigue, more appetite. He's still pretty confused and dopey though. He'll start doing a thing, then forget what he was doing, and start doing a totally different thing… Today he was going to take our (slow, old) dog for a walk so he started putting on pants. Then I checked on him 10 minutes later and he was just in a towel! Halfway through putting on outside clothes, he forgot he wanted to walk the dog and thought instead he was getting ready for a shower! Things like that seem to happen all the time these days! We laugh about it but it's also a little concerning to me…
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- May 6, 2019 at 7:43 pm
Hi,
Sorry to hear all this. My very first Nivolumab treatment caused me to become hyperthyroid. I had extreme fatigue and palpitations. One minute I would be ok and the next was like someone turned a furnace on and I would be melting hot and sweating through my clothes. I had no concentration and was very forgetful ( worse than usual!).
I took Prednisone daily and this helped with the heart rate but not much else. They couldn’t give me more as I already had low blood pressure and they didn’t want to lower it any further.
Within 4 weeks I had crashed and am now hypothyroid. The consultant has said this will be permanent. I now take levothyroxine daily; initially 50mg for 5 weeks and now 75mg while they try to find an appropriate level that works for me.
Hope this helps.
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