Spouse/caretaker for husband w/ICC who is declining further chemo

Thanks, Mary. I just watched Dr. Li’s keynote address from 2020 (found on that link). Informative and motivating to me… strengthens my commitment to getting my husband to eat less empty or bad calories and hopefully get him back on our previous healthy-eating diet.

Hesw, I’m sorry to read that you’re struggling with cachexia but very glad that you’re eating well. I agree with you that diet/nutrition is so very important — gotta give our immune systems what they need for boosting and deny our diseases what they crave for progression. I know that what I eat affects my osteoarthritis for sure (goodbye yummy sugary desserts, haha). Right now I’m most concerned with getting enough calories into my husband every day. He’s 6’4″ but his appetite doesn’t match his size anymore. I sure welcome any tips/tricks from the community.

And yeah, the psychological or emotional aspect of receiving treatment has been a big issue for my husband. After he decided to end chemo he didn’t want to ever go back upstairs to the cancer center’s infusion ward for any treatment of any kind… he was really traumatized by the chemo experience. But now after a six week recovery break, he has agreed to try immunotherapy infusions and had his first round last week. I hope it goes smoothly for him so he’ll feel up to continuing indefinitely. That said, whatever he decides, he’s got my full support. His life = his choices.

Thank you for the welcome, Mary.

My husband is noticeably improving these past few days. Pain has subsided with medication and his appetite is increasing. I’m hopeful that he’ll accept further treatments if the side effects are mild enough with any proposed medication. He did not handle the chemotherapy well at all… not just physically but emotionally. He has said, rather emphatically, that he will NOT go back to the infusion ward ever again. That’s going to be an issue if any suggested treatments involve intravenous delivery. Essentially, he’s made the decision to decline all drugs unless they’re pain-relieving or have near to zero side effects. He is in a “let’s hasten this thing” mindset rather than “let’s fight this.” He was so frightened back in October when it seemed a certainty that he was going to be diagnosed with cancer, and most likely THIS cancer, and he was desperate to get going on treatments as immediately as possible. It’s sad to find us where we are now, just four months later — he seems to be handing the keys to the cancer and is going to let it drive (btw, he is already on anti-depressants plus anxiety medication and regularly checks in with his psychiatrist). Treatment decisions are his to make, and I respect and support that right, but I’m going to do what I can to encourage him to give some things a try before rejecting them completely. His oncologist ballparked one year for him if we don’t find a targeted therapy. As expected, the doctor also recommended we look for relevant clinical trials… a daunting task for a non-medically trained person. But that’s a moot suggestion anyway since my husband is not interested in participating in trials.

Since his tumor mass was no longer visible on the last PET scan, and the nodules/nodes in his lungs and near his heart showed little uptake, I’m not sure how long it will be before the cancer grows and spreads again (if there are no further treatments of any kind). His cancer was poorly differentiated and the tumor mass had extensive necrosis — indications that his cancer was a high grade in addition to being in an advanced stage. I truly didn’t think he’d achieve “near complete remission,” but he certainly did! Any insight or experience with remission times would be helpful to me, although I know it’s all very individualized.

Waves of grief crash over me at times when I’m alone, but for the most part I channel my energy into fighting my own private war on his cancer — keeping his weight up, making sure he eats immune system-building foods, keeping him interested in distant events like my son’s future PhD dissertation defense (things I know he’d like to see for himself or be a part of), helping him maintain his mobility and strength. I thought the physical drain of caretaking would be the hardest, but so far dealing with his emotions/psychology is, by a mile, the most crushingly difficult aspect.

Hi, I’m glad your oral therapy is proving to be less intense. And best wishes to you for treatment success.

CBD oil is something that’s been in the back of my mind for a while as a possibility for him. My 85 yr old mother bought a couple bottles with high hopes it would help alleviate her arthritis pain, but she felt it wasn’t helping her. The upside to her disappointing result is it means we have some on hand here in the house. I’ll mention it to him today. We’ll need to verify that none of the bazillion medications he’s taking would be a reason he shouldn’t use CBD, but if it’s a green light, he might want to give it a try. Thanks for the suggestion 🙂