Today is a hard day or I guess I should say harder than usual. Today is the two year anniversary of losing my wonderful husband Jimmy to HCC. I work to raise awareness, provide support, and hopefully bring about needed changes so one day no one will have to lose their life or their loved one to this awful disease. I do it to honor Jimmy and keep his memory alive. I also do it because Jimmy asked me to do it. He felt that using his story to raise awareness made his death mean something. That statement shows you what an amazing man I lost and why I love him so much and always will. Even knowing he was dying, he was was thinking about the ones that would face it after him and the others living with it. Friday I was asked to do an interview about liver cancer treatment, a survey about our experience with Hepatic Encephalopathy and do be a part of an advisory group organized by a Cancer Center. It was so cool that all three requests came right here at this time. I'm making sure lots of people hear about my cowboy from East Texas baby. ❤️❤️❤️
Remembering Jimmy Today: Today is a... - Blue Faery Liver ...
Remembering Jimmy Today
Anniversaries are hard. Sending love and prayers❤️You are honoring Jimmy and making a difference for other HCC patients and families!❤️❤️❤️
Thank you Bonnie. I know you understand just how hard they are. ❤️
DancingEyes63, love your tribute to your husband. My husband has been fighting HCC for the last three years. About six months ago his immunotherapy caused protein to show up in his urine. They took him off his standard of care med and kept him on the other part of the immunotherapy. Then it stopped working and his AFP started going up. He recently had a Y90 radiation to zap two tumors and just had a TACE procedure to kill two other tumors. But of course while they were in there they saw another lesion. They couldn’t TACE it at that time as he has had so many procedures. So they’ll get it later.
Through all these treatments he has been getting pretty antsy, I’m wondering if you have any advice on how to help a patient feel calmer and not get so worked up. (If you went through that?)
Thanks
I understand the frustration that I'm sure y'all both feel. Jimmy actually had a great outlook on it the entire time. I'm afraid I was the one that anxious because I didn't want to lose him. He was more focused on just living every day and enjoying the time he had, however long it ended up being. When I got on board with cherishing every day with him, it got easier for both of us. I'd suggest instead of stressing and focusing on what treatment he's waiting on, try to focus on each day and making the most of each day. It doesn't mean you're giving up. It just means the reality is that he has to wait to get more treatment but don't stop living while you're waiting. Y'all might already be doing it but if not make a point of making memories and doing things you enjoy or have wanted to do but have put off. If needed, ask doctor about palliative care (it's not hospice) so any symptoms and pain he may be having are managed so he feels better. I think it's so easy to get focused on the cancer and treatment or waiting for treatment, etc that we often forget to LIVE. On the Blue Faery YouTube channel and on The One Liver To Love YouTube channel there are three videos of Jimmy talking about focusing on living and not the cancer. Hopefully getting your husband focused on something besides having to wait for more treatment will help. If you have any other questions please don't hesitate to ask. I know how important support is not only for the patient but also the caregiver. Wishing y'all the best. ❤️❤️❤️
Thank you
Great advice!
I love that the panelists on the last webinar had the same attitude/philosophy as Adrienne and Jimmy..... To make it about living and not about cancer. I really enjoyed watching it. ❤️
I'm glad that he's able to have the Y-90 and Tace procedures to zap the tumors. Anything to slow them down and gain some time ❤️
Yes he tolerates these procedures pretty well too. And so far his liver tests are normal. Just need to get back on some sort of immunotherapy so they stop growing! While they were doing the TACE last week, they got the two spots they were looking at but noticed another new one that we have to watch. It would be nice for him to have a breather on the lesions. This is where he gets depressed.
I just try to remain positive and remind him the docs are all working it together.
It's great to hear the liver tests are good. The immunotherapy was shrinking Jimmy's tumors but he already had cirrhosis so it was causing too much damage to his liver. Looking back, I wish the oncologist would have just been content to let him have more Tace procedures as more tumors grew instead of the Lenvema and immunotherapy. He had a Tace on the original tumor when first diagnosed and it killed it. The IR wanted to try on others but oncologist overruled it. At the time, we didn't know to question so just followed his advice. 💔
We had that happen too! After his first surgery (microwave ablation) we went to try and get a transplant. No tumors grew for a while and then one popped up. They TACE’d it but then one spread to his lymph node. They kicked us out of the transplant program and put him on immunotherapy. The tumor in his lymph node has disappeared but the liver ones grew and multiplied. (When they took him off the immunotherapy.) This is why he is nervous not being on something because he doesn’t want it back in the lymph system or anywhere else.
We have told the docs this and they said they will address but need to let his liver calm down from the Y90 and TACE. Makes sense. But still you worry.
How long was Jimmy’s fight with HCC? We have been fighting this for three years now.
When they diagnosed Jimmy it was already at stage 3b. While we were waiting to get in to oncologist, his GI referred him to IR for Tace on the large tumor. It was successful but there were smaller satellites around it. The IR wanted to go back and try to get them. By this time we got into the oncologist who cancelled the procedure and started him on the Lenvema. Horrible side effects even on lowered doses and in the 3 months from one MRI to the next he had tumors all over his liver. Then the oncologist started on Opdivo which was shrinking the tumors but almost put him in liver failure. We decided to stop treatment at that point and went on Hospice. They discovered the tumor in. December 2020 and he passed away on October 27, 2022. He spent the first year in treatment but was sick the whole time and lost 50 pounds and could hardly get out of bed. When the Hospice team started treating his symptoms and managing his pain, he was able to enjoy his last year. Because of the liver disease, his GI wanted him to get a transplant but Jimmy wouldn't agree. He felt that he'd lived his life and there were younger ones that needed that liver. I wanted him to have the transplant but that was probably the only time in our lives that he didn't give me my way. I understand why he's worried because it is scary how aggressive HCC can be. Unfortunately the problem comes with having to balance treatment on the cancer and damage to the liver. It's actually good that his doctors are aware of the situation and being careful. That's why I ALWAYS tell people now to make sure their oncologist has experience with HCC and dealing with the liver. We were in a rural area and ours didn't. I've met some people on here that have been able to fight it for years with immunotherapy. As long as the patient can stay alive, there's ALWAYS the possibility of a new treatment coming out that works for them. ❤️
Yes there is hope for new treatments. Jimmy’s case is very similar to my husbands in the start. We have the benefit of going to Georgetown University which helps as there are many different options. The Oncologist and IR docs are working together too.
Thank you for your knowledge on all this. It’s nice to chat with someone in the know!!
You're welcome. I'm always glad to help any way possible, even if just being a listening ear. I'm glad that y'all have access to a different options and doctors that work together as a team. Even though there are some wonderful doctors in a rural setting, there is often not much choice, a definite shortage of specialists and hard to get the work of a "team".
Thank you for honoring Jimmy in our community and for advocating for other liver cancer patients! Sending lots of love ❤️
You're amazing, Sharon. 💙 Andrea
Thank you. Right back at you lady. ❤️
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