Had one infusion, side effect relentless diarrhea, then no bowel movement for 5 days, with stomach pain that had me near suicidal!Drank 16oz of hot peppermint ginger tea, incontinent for 2 days.
Finally stabilized after 7th level of hell. Can't see risking another try.
My husband was on Opdivo immunotherapy infusions so I'm not sure about the side effects of the other. The oncologist had originally wanted the combo and insurance said to do Opdivo first. We had been told that neither had side effects but due to the amount of cirrohsis in his liver, the Opdivo almost killed him so he stopped treatment and decided to enjoy the time he had left. The oncologist had said the immunotherapy was last hope. What did the doctor say about possible side effects? His tumors were in both lobes also. Has the oncologist mentioned any other treatment that could be an option? My husband had just gotten to the point where he made the decision to choose quality of life over quantity of life. He didn't pass away in a week or two like the oncologist said he would if he stopped treatment. He lived almost another year and was able to enjoy it and feel like doing the things he wanted to do. He had been really sick the year he was on treatment. It's a difficult decision and one that no one can tell you the right answer. I think the right answer is probably different for everyone. Sending prayers and positive vibes. Sharon ❤️
Condolences for your loss. Will pray for hubby's soul. Last month onco gave me a year to 18 months but I wasn't doing well at that time. This week, cancer was looking weakened before the infusion, for reasons unknown. Liver enzymes were dropping again reasons unknown... So I'm guessing it's just the vagaries of what cancer does: good days and bad days. We try so many things, hard to tell what's kicking ass, various combos, so ya, it's a crapshoot all the time.
I remember when Opdivo and Yervoy first came out; immunotherapy sounded like the cats meow but my onco wasn't impressed by the clinical trials data so we held off.
Stay safe, Sharon and thnx for sticking around here.
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I'm so sorry you had such a difficult time. Have you talked to your onco to see if there's anything you can do prophylactically to prevent recurrence with another infusion and if they feel the symptoms are due to the infusion? Immunotherapy combos like all meds have many side effects listed but do tend to have less than the targeted drugs. My husband took this combo without any major issues and felt the best he felt on any of the meds he tried during his 27 month battle with HCC. This combo became the gold standard when it was approved and we were excited for him to try it. There are some other combos that are new if you and your onco feel not worth it to try another round. Sending prayers and wishing you the best as you make treatment decisions!!
I can only say that my husband avoided taking Tecentriq/Avastin for nearly two years, after being given a prognosis of terminal liver cancer . He didn't suffer any pains from his cancer until after taking the above which he did only when the hospital said there were more tumours. He also had covid after the 2nd infusion which may have compounded the situation. But I and my husband did feel that the treatment didn't improve his chances. He did seem to go downhill very quickly after the 3rd infusion and what did it achieve? The consultant (a wonderful woman) stopped the treatment after that because she could see it was not beneficial. However, in defence of the medical profession there must be examples of those who have benefited from the treatment. You sound as if the side effects are more unpleasant than the cancer. Personally that would stop me taking it. Wishing you all the very, very best in whatever direction you take your treatment.
Sincere condolences for your loss. Merci beaucoup for your reply. I agree with you, that when treatment is worse than the disease, what's the sense? I've learned to trust my instincts implicitly and red flags are flapping noisily in my face.
May you find peace and comfort again soon. Time heals, cheri.
Without genetic testing (which is often easier said than done), it's nearly impossible to know if you will do well on certain treatments. Targeted and immunotherapies work on ~20% of the population because those people have those specific markers. If it's not working for you, there are so many other options available. Look here: bluefaery.org/treatment-opt...
You summed it up very succinctly in the statement about when the treatment is worse than the disease.... Unfortunately the four of us in this conversation that have lost loved ones have all had to deal with that truth and make, help make, or support the decision about what to do when it reaches that point. It's so hard to know what to do and sometimes made harder when you're either getting differing opinions from the medical personnel or as we experienced, a closed mind. I don't know if this combination would have given better results than the Opdivo for Jimmy. I feel that if his oncologist had been more open minded and cooperative to the genetic testing we might have had an answer to that question. Unfortunately even though (with Andrea and Blue Faery's help) I had gotten him approved for it, the oncologist wouldn't provide what they needed because he didn't think it was valid. Ultimately though I think a lot of how a treatment works or arrects it has depends on the shape of your liver and Jimmy's was BAD. Some people think that stopping treatment is giving up. I don't... because believe me Jimmy never gave up. He just accepted the reality and decided that he was going to live what was left of his life on his terms, not cancer's. If there's any way to get the genetic testing, I would. Then you'd have an idea if it would possibly help or not. Sending prayers as you have to make the hard decisions that hopefully one day no one will have to make. ❤️❤️❤️Sharon ❤️
Liver cancer metastasis to my lungs incurable 
HCC PATIENT LOOKING FOR NEXT STEP
Updated information causing confusion