Hi everyone. Jimmy and I have had a bad few days. He hasn't felt well for the last week or so but kept trying to convince me he was fine. Sick to his stomach and hardly eating anything. I could tell he was hurting even though he denied it but was taking his pain pills as often as he could. Went to have MRI and lab work on Friday. His liver labs were up some and then got results from AFP on Monday and it was up. Yesterday morning finally got results from MRI and my heart dropped. The little satellites around original dead tumor had grown to a tumor that was 5 cm by 8 cm and filled most of that section of liver. Plus a nodule was seen in other lobe. After several months of stable results, it's like the cancer just exploded. Had our appointment with Oncologist yesterday. Jimmy's lost more than 20 pounds since Thanksgiving. He said the Lenvima had stopped working and the cancer is growing quickly. He recommended trying the combination of Avastin and Tecentriq immunotherapy as a last option. If Jimmy doesn't do it or if it doesn't work then he's guessing maybe 2 to 4 months left and will start him on hospice. Jimmy said he'll try the treatment. They just called me and he's set up to receive first one next Wednesday. Said the first one will take about 3 hours but it will go down as he takes more treatments. I have a teleconference the day before to discuss side effects to watch out for. The oncologist had said this is usually easier on you than regular chemo and didn't think it would be as hard on him as Lenvima had been. Kind of blew my mind that I have to have a teleconference the day before to explain treatment. Has anyone tried this and if so, how was it?
Guess I had let myself forget what a nasty b*tch HCC was and got lulled into a false sense of security by the good stable months. Yesterday I was sure reminded.
Oncologist is starting Jimmy on a pain patch to try to help his pain. Said it will keep some in his system then he can take something else for breakthrough pain. Am I being selfish to encourage him to take the treatment? The oncologist said he'd do it because there's nothing to lose at this point.
I'd welcome thoughts and prayers. ❤️❤️❤️
Sharon
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DancingEyes63
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All the prayers and good thoughts going up for you both, Sharon. It is really hard to absorb disappointing test results and also keep a positive face for your loved one.
I've seen posts here talking about good experiences with this combo, and less side effects too, so I really hope that is Jimmy's experience as well! The pain patch sounds like a good idea too - anything to give him some relief.
I don't think it's selfish, no - Jimmy knows you would like him to continue treatment, of course, but he also knows you'd accept his wishes and I really think he wants to do what he can to have more time with you. If there is still hope for a treatment to offer stabilization, why not grab it? As the oncologist said, there's nothing to lose. But you may gain some precious time.
Thinking of you both as you navigate these difficult waters, and sending lots of love.
I am so sorry to hear of this development and progression. HCC is a roller coaster journey for sure. It’s a difficult decision that you’re faced with but the hope for more days together is a compelling one. Even if those days are spent in quiet places together. I’m unfamiliar with what the side effects may be of the proposed treatment but my husband’s side affects from his immunotherapy treatments were far less troublesome than chemo, Y90 or Lenvima. I’d be happy to chat with you privately - just message me. I love your tree - it’s beautiful and lifts spirits during this extraordinary struggle.
I’m sorry I’m just now seeing this post. My husband was on This after failure of Lenvima and Nexavar and felt the best he felt on this treatment which worked for him for a number of months. It does have side effects but he was not affected by them. It is an infusion so it’s easier than taking pills every day. Certainly quality of life and time are the two key issues we all want with HCC and this treatment gave my husband both. It is was just approved last year and is now a gold standard for HCC treatment. Sending prayers and love that your husband will benefit as mine did for a number of months Sharon!! This may be a duplicate post because I couldn’t tell if the first one I did went through. Bonnie
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