I've been asked to share the patient/family's perspective about the side effects of immunotherapy for an event that will educate doctors.
If you or a loved one did immunotherapy, would you mind sharing the side effects?
+ What were the side effects?
+ How bad were they?
+ Did the side effects cause you/your loved one to stop immunotherapy?
+ What are your thoughts about immunotherapy in general? Is there anything you want doctors to know?
Thank you in advance for your feedback! 💙
DancingEyes63 Curly_Girl bwpickard Wifey2021 Joschua Sschiltz pussycat66 PJDavies Dadhaslivercancer
Andrea, my husband was on atezo/bev combination for 9 months with really no specific side effects and felt the best during that time of any of the other targeted therapy drugs tried. He stopped it because of progression of hcc so MD felt it was no longer working. I only wish that the immunotherapy combo had been available when he was first diagnosed! Hope that helps. Bonnie
Thank you for sharing! 💙
Hi Andrea
I have been receiving atezo/bev immunotherapy since February this year. I am due to receive treatment 14 on Wednesday next week.
I missed my last treatment due to oral thrush and an unusual rash/spots developing but the toxicity consultant does not think these symptoms are related to the immunotherapy and I am able to restart as scheduled. My scans have shown no growth/no spread. The oral thrush has been successfully treated but I am still experiencing small raised spots which can be itchy on my hands and feet and a few other, seemingly random places (arm pit/ back) but they are not typical of immunotherapy rashes, I am told.
Apart from these I am relatively well; gardening, doing Tai Chi, walking, travelling in the UK .
I am tired and feel easily stressed out but I have a terminal diagnosis so I try to enjoy my relatively good health and aim to stay on immunotherapy as long as it keeps my cancer at bay. I hope this is useful X
Thank you for sharing! 💙
Dear Andrea,
My father received one course of immunotherapy and a point of learning was that it was difficult to discern side effects, cancer itself, and an additional issue that required evaluation. He did experience oral thrush and significant fatigue and weakness. Timing of the side effects is also an important question, as we were advised they can occur at any time. This was just our experience.
Sarah
Thank you for sharing! 💙
Unfortunately, Dave was never able to try immunotherapy because he had a bone marrow transplant back in the 90s when he had leukemia. They were afraid it would kick up GVHD, I believe, so his only treatment (other than Y-90) was oral chemotherapy.
Thank you for sharing! 💙
I'm so sorry. I don't know how I missed this. I'll answer this anyway. Jimmy was on Immunotherapy for 3 months so he received six infusions. At first it didn't seem there were any side effects. Then he started to feel more fatigued and lost his appetite again. After a couple of infusions, his liver panels started worsening, especially his platelets dropping. The second month he started swelling and retaining fluids even though he was totally off salt and on diuretics.
The last month his platelets were almost non-existent and his liver panels were horrible. The swelling in his feet and legs were so bad that he couldn't get out of bed. At that point, after consulting with his GI, we decided to stop the treatment due to the damage to his liver it appeared to be causing.
I've heard of many people that had wonderful results on Immunotherapy. Unfortunately Jimmy wasn't one of those. I think it's important for both the patients and doctors to remember that it is NOT for everyone. I think in our case, the oncologist didn't know what else to try to he tried this. Sadly it could have shortened Jimmy's life instead of helping.
Sharon❤️
HCC PATIENT LOOKING FOR NEXT STEP
