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

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  • #101612
    Gap
    Spectator

    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.

    #101611
    bglass
    Moderator

    Hi Gap and Hesw,

    Thank you for your messages.  As you point out, nutrition is a topic that can be a worry for our patients.  Here are some resources from the Cholangiocarcinoma Foundation website:

    Five for Friday – 5 ways to use nutrition to fight cancer

    Regards, Mary

     

     

     

    #101610
    Gap
    Spectator

    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.

    #101609
    Gap
    Spectator

    Thank you, krissy2022. I hope you and your family have a warm and peaceful Spring.

    #101605
    Hesw
    Spectator

    Hello

    Well from my experience there are different approaches to cancer. I found it very difficult to adjust  mentally to some treatments for  CC , because of the nature of the disease.I have been on 4 different ones in 15 months. I do, eat well even though I’m underweight with cachexia.  It upsets me that I’m so thin. Diet, in my opinion is much more important than us humans think. Good luck!

     

     

     

     

    #101604
    Krissy2022
    Spectator

    Thank you for sharing your struggles.  I can see us in your story.  It’s helpful to know others are struggling with this, too.  God bless you both on this difficult journey.

    #101544
    Gap
    Spectator

    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.

    #101543
    bglass
    Moderator

    Hi Gap,

    Welcome to our community.  It is very good news that your husband responded so well to his chemotherapy.  I hope his good results persist and he continues to feel better.

    If the biomarker testing shows his cancer involves mutations for which there are targeted treatments, they may be an option for the future if needed.  The newer treatments are much milder than chemo in terms of side effects for most patients.

    If  your husband continues to experience pain or discomfort, he should push his doctors for ideas on how to address this.  If your husband is being treated by a hospital, there should be a palliative care practice there that helps patients deal with discomfort caused by cancer or its treatment.

    I am sure your husband feels blessed to have your loving care during this tough time.  Please stay in touch and let us know how he is doing.

    Take care, regards, Mary

    #101541
    Gap
    Spectator

    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 🙂

    #101539
    Hesw
    Spectator

    Hi there

    I completely understand . I agree that if you’ve a lot of pain permanently there’s no point in continuing chemo. I stopped just for 2/3 weeks and I went back to my normal self which I hadn’t been for a  yr. I can’t suggest any treatment plan . I take oral therapy PEMIGATINIB  and I find it easier than traditional therapy. If he gets pain again for some reason I would try cannabis products eg. oil a few of my elderly friends find it useful.

    Good Luck to him

    #101538
    Gap
    Spectator

    Hello everyone. I’m the 58 yr old spouse of a 77 yr old man who was initially diagnosed with ICC via CT-scan in mid October 2021, which was then confirmed via PET scan and biopsy in early November 2021. All this was triggered due to blood work taken in September 2021 that showed elevated AFP of 66 and AFP-L3 of 56. He was subsequently tested for CA 19-9 of 39. While elevated, these markers weren’t screamingly off the charts, yet the PET scan showed that in addition to a 4.4 cm x 5.7 cm tumor on his liver (in the caudate lobe region), he had significant uptake activity in two lung nodules as well as in a node near the heart. Since the cancer had metastasized, surgery was out and chemo was ordered. My husband began his first cycle of GemCis in early December, and after completing three cycles was given another PET scan earlier this month (February 2022). He had remarkable results: a “near complete remission,” according to his oncologist. There appears to be no sign of the mass on his liver and no concerning activity in the nodes. The plan was to continue GemCis for three more cycles but with a 25% decrease in the amount of Cisplatin due to it aggravating my husband’s pre-existing peripheral neuropathy. But after the first round of cycle 4, my husband has elected to stop chemo altogether. The peripheral neuropathy pain was all-consuming and, in his words, not a life he was willing to live if that’s what was going to be necessary to live it. His doctor was supportive of my husband’s decision and we will meet up with him again in a couple of weeks to see what plan of action he proposes going forward. Genetic testing returned disappointing, incomplete/inconclusive results as the biopsy sample provided was poor. It has been resubmitted in hopes of finding something actionable. Meanwhile, my husband is having a chance to heal up a bit. Every day is making a big difference and he’s handling the pain levels well now and is less weak, less off-balance and less unsteady (a huge deal for me since I’m 5’1″ and he’s 6’4″, so helping him stay upright can be a real feat). He’s maintained his weight through all of this, but with a lot of effort — I feel like I have become a short-order cook in the world’s most bland 24/7 diner specializing in protein smoothies, mashed potatoes, oatmeal and fried eggs, haha. His psychological and emotional state had become extremely low… Mariana trench level of low… since the 2nd cycle of chemo but his decision to end treatment seems to have lifted a great burden off him — he’s jovial, more cooperative in his own daily care, more like his old self. We don’t know what the future holds for my husband, treatment wise or symptom wise, but he has made the decision that he will not go through any chemo again no matter the consequence. He’s opting for quality of life over quantity, but I’m still hoping we’ll find a treatment plan that offers him both. Looking forward to listening, learning, and sharing here. Warm regards to all.

Viewing 11 posts - 1 through 11 (of 11 total)
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