› Forums › General Melanoma Community › Opdivo questions
- This topic has 6 replies, 3 voices, and was last updated 4 years ago by
Redstar.20.
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- April 21, 2020 at 1:50 am
Hello! So a little background, first diagnosed with malignant melanoma 3yrs ago, came back in January. Habe had surgery and I stage IIB, intransit metastatic recurrence. I started Opdivo infusion March 20th. My oncologist wanted to focus on the sunshine and roses of Opdivo, as most people on Opdivo have little to no side effects. After the first round of treatment, I had rash from chest to face, all over deep tissue itching, exhaustion, muscle aches, swelling in hands and joint pain in hands, at times there was shooting pain down my arms and legs with on and off numbness/tingling, swollen lymph nodes, and hair thinning. All of these side effects were livable, and I treated the symptoms. My best week was the fourth week, the week before my next infusion. At my infusion the oncologist and I decided to try doing a half dose to see if lessened the side effects. About 4.5 hours after completeing infusion number 2 I became very hot, sweating, clammy, shaky, dizzy, headache, nauseous, head spinning. After lying down for about an hour my side effects eased up a bit so I knew I didn’t need to go to the ER. The next day I was still experiencing the headache, nausea, dizziness, head spinning so I reached out to the oncall oncologist, and we decided to try treating the symptoms instead of doing prednisone that would cancel the Opdivo effectiveness.
The anti-motion sickness medication helped take the edge off, and I felt better as long as I did very little.
Today I called my primary oncologist to get a prescription for something strong, so I could work etc. My oncologist said she could write a script for the nausea, but she is concerned that if we treating the side effects and continue with the Opdivo, that next time I could have an even worse reaction and that may be we shouldn’t go forward with the infusion. I am at a loss. Are there other alternatives to treat the cancer? Has anyone experienced these kinds of reactions on Opdivo?
Could use some advice from experienced cancer warriors.
Thanks
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- April 21, 2020 at 1:24 pm
Sorry you are dealing with these things. Here are my thoughts:
1. Opdivo is rarely side effect free, though the side effects vary person to person, both in severity and symptoms.
2. Rashes are extremely common and basically to be expected.
3. The last set of symptoms you describe are not the side effects typically associated with immunotherapy.
4. However, immunotherapy and responses to it can be odd.
5. There is no reason to think that just because you are on immunotherapy that everything you experience is related to that immunotherapy. Meaning, sadly, that you can develop all manner of things that other people can get – vertigo, colds, hay fever, stomach bugs, and more – while you also happen to be dealing with melanoma and immunotherapy.
6. Being sure you are dealing with a melanoma specialist – or at least an oncologist who has treated lots of patients with melanoma using immunotherapy – is super important, as your present predicament highllights.
7. Steroids can be helpful, and even necessary, to treat side effects related to immunotherapy. While they should not be taken if they are not absolutely needed, researchers have learned that they should be used to treat IRAE’s and do NOT diminish response. Here are a zillion reports: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=steroids
8. I think it would be super important for you to have a checkup – an exam, vital signs (especially blood pressure), some blood work – to more fully determine what is going on. If I were you, or your oncologist, I would discuss the risk of more possible side effects on the subsequent infusion, and consider you might premedicate with benadryl and administer the infusion in hospital for 24 hours….so as to observe and monitor you for any additional reactions.As far as other treatments, if you are BRAF positive, targeted therapy can be used. Here are a zillion posts on adjuvant care: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=adjuvant
Just my take. I wish you my best. Celeste
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- April 23, 2020 at 3:18 am
After my side effects continued to spiral down hill, my oncologist and I decided to treat with corticosteroids. Going to have tests done with an endocrinologist for adrenal gland insufficiency, as my current side effects on infusion #2 are very very similar to those symptoms.
I also realize not everything I experience is Opdivo related, however I am very aware of my body and very aware of new onsets, triggers etc. I had the infusion and within 4 hours I was reacting. We are definitely postponing any future infusions until we have a clearer picture of my lab work and further testing. Further checks to see if autoimmune disease might also be a contributing factor. Unfortunately I seem to find myself on the rare end of the medical spectrum on many levels.
I have learned a lot from your posts and reading other posts as well. Thank you -
- April 23, 2020 at 2:44 pm
Endocrine side effects are fairly common with immunotherapy. (That’s why I wanted your lab work evaluated!!!) Usually thyroid or adrenal problems can be rectified with a therapy holiday, steroids, and supplementation of needed hormones. Often, once that is done, immunotherapy can be resumed. Hope you find answers and feel better soon. c -
- April 25, 2020 at 3:47 pm
Thank you! This journey is hard and stressful and scarry. It is helpful to hear from others who have gone through this war as they have a different perspective than the medical team. It is encouraging to read and listen to those that understand what one goes through in this war. I thank you for being thorough, and discussing the complex issues. I appreciate your input very much. So again, Thank you! -
- April 23, 2020 at 5:19 pm
Hi!
I’ve been dealing with this beast for 11 years. As I write this I am getting my Opdivo treatment. I almost had to quit back in January 2019 because I had the less frequent side effects of swelling and severe joint pain. I saw an endocrinologist and rheumatologist. In the end a prominent melanoma specialist was contacted and he prescribed a low dose of prednisone (5mg). Made a world of difference and the prednisone does not negate the effects of Opdivo in low doses. Good luck! -
- April 25, 2020 at 3:48 pm
Thank you for sharing a part of you journey. That helps me in many ways.
Thank you
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