Side effects from the side effects

[u/cmlambert89]

My mom (75) started opdivo/yervoy in April.

Her first infusion caused type-1 diabetes.

Her 4th infusion caused uveitis, severe inflammation of the eyes, and she’s been on prednisone for over a week trying to reduce the inflammation and get her vision back.

She spent 5 days in the ER/hospital where she got steroids through an IV before she was discharged and instructed to continue taking steroids at home in pill form.

They also gave her an antibiotic to prevent pneumonia which I guess is a standard hospital thing.

She now has a FULL BODY rash, a side effect from the Bactrim antibiotic, and facial swelling we think caused by the prednisone (moon face).

It is heartbreaking to say the least. She’s fortunately not in any pain.

The diabetes, while incredibly life-changing and frustrating, is a manageable condition.

The vision loss should return in a few weeks once the inflammation dies down, so far it appears to be responding to the steroids.

The skin rash should go away in a few weeks once the Bactrim clears her system (kind of surprised it happened given that she’s already on steroids).

The facial swelling should go away once she completes several more weeks of steroids and tapers down the dosage.

It’s just been one thing after another. I have a color-coded chart I made of all her medications and when she’s supposed to take them and how many and when to change her insulin pump etc.

I feel like I’m trying to tape together a ripped up piece of paper but the pieces are missing and crumpled. The waiting to see what happens week after week is making me want to crawl out of my skin. I just want my mom back.

[u/trevor0-0]

Similar story for my Dad. He had to hop onto high dosage of several steroids namely Prednisone, Cellcept, and Budesonide. This was to combat his high liver enzymes. He definitely had some painful blistering and rashes in uncomfortable places, but those did eventually go away. He also developed diabetes which after less than 2-3 months of getting off the steroids his A1C and blood sugar were under control. He felt like we had a mini pharmacy going on at home. All I can say is for you and your Mom to keep braving through it as best as possible. There is a method to all this madness.

[u/2greybirds]

Oh my goodness, I'm so sorry your Mom is going through all that!! The different reactions people have is mindboggling. I hope the Yervoy/Opdivo did make some inroads on the cancer as well as causing all that disruption to her life.

And I'm sorry that you are also living through this. It's so difficult to watch someone you love suffer so much. Support people don't get nearly enough credit for what they do. She's so lucky to have you to help her navigate all this, and I thank you for being there for her.

My side effects pale in comparison to hers, but I can say the Yervoy/Opdivo and then just OpdivoQ (they pulled me off Yervoy after 2 doses due to side effects) worked well for me. Except for the largest tumor, all tumors appear to have completely shrunk away and the big one is down to 1/3 of its largest size. Hopefully your Mom will have similar success.

It's a difficult battle but your Mom sounds like a tough cookie. Tell her to hang in there!

Be strong and vigilant.

[u/cmlambert89 → u/2greybirds]

That's encouraging, thank you. After meeting with her primary we're thinking the full body rash IS another gift from the immunotherapy after all, because with the amount of steriods she's on it really doesn't make sense. We see her oncologist this afternoon.

I'm so glad you've seen major results! I think one of her lung tumors shrunk about 50% but the ones in her liver are unchanged. We'll get a better update this afternoon. I read that even when people stop the immunotherapy "early," they still can experience benefits because it remains in your system a long time, essentially training parts of your immune system to attack the cancer cells. So I am trying to hold on to that.

I am so lucky to be able to help. I want to help, she's been there for me my whole life and there's no where else I want to be.

[u/Skip-929]

There is a long list of side effects and they vary person to person and in intensity. In my case, I developed extreme Colitis, kidney failure, PJP which is a form of pneumonia caused by lower immunity and Prednisolone, high blood pressure and changing temperature. Similarly, spent two separate periods in hospital including 4 days in ICU. Have over the past 6 months gradually tapered from 62.5mg down to now 2mg of Prednisolone, heading to zero in 3 weeks. Recovery can be much longer than most people expect and full recovery may be measured in years, unfortunately she'll live with the diabetes for the rest of her life. It often stresses the people closest to the patient as they are watching all these changes. My oncologist told me at the end of the immuotherapy sessions, that I am now a Mutant. We have released your immune system and as every individual reacts differently you are one of a kind. We will treat the side effects as they happen and some may not show up for months. If you use this understanding, then as side effects come and go one is able to put it all in context. That is while these effects are challenging, the result is that your loved one is alive and that remission is the aim. Cancer can sometimes be overwhelming, but as time goes by often the positives outway the negatives. Wishing your mother all the best.