HCC diagnosis 1/2022; Microwave oblation; Recurrence December 2022;Y-90 January 24; CAT of lungs this week:I am caretaker or my husband

[Magictoo]

I am so so upset. I thought this y-90 would work, but it takes one month to three moths to know how it did work. The new med oncologist who saw us last week is ice cold and started talking atavisticand another therapy tecentriq pending scan result if see if two small nodes in lung are malignant. We have been married 54 years together since we are 17. We have been going to Stony Brook U. Hospital but I am in contact with Sloane and have an appt. there with a med oncologist March 17. I feel time is of the essence. I did send Tom's MRI to the Sloane interventional radiologist for an opinion on how the y-90 is looking. Although the Stony Brook oncologist said she saw more tumors, the Doctor who did the y-90 said it is too early to tell how the treatment is working. My husband is very tired lately and we have not gone out in several days. Of course, prior to that, we were up at 8 a.m. every day for doctors' visits or scans. Can anyone help me gather my wits? Keep me strong and hopeful? Thank you so much. We always go to church on Sunday but if he is tired I won't force him. Waiting is awful.

[MichelleL_BlueFaery]

Hey Magictoo ,

Thank you for sharing. I'm so sorry to hear about your husband's condition. I'm praying for you and your husband's health and well-being.💙🙏 💙

[bwpickard Caregiver]

I’m so sorry for what you’re going through. My husband had y90 and was also told it takes awhile to see results. We did see shrinkage and some of tumor was killed. He was also on a targeted med at the same time and he did eventually take Avastin/Tecentriq which you mentioned which helped for a number of months and in his case he had minimal side effects and felt the best he had felt on that combo though a lot of side effects are listed. Obtaining a second opinion is always helpful with either affirming treatment or providing another avenue. Praying lungs are good and you will have peace with the treatment plan you choose. Hope this helps! Prayers are with you! 🙏🏻🙏🏻

[Curly_Girl Caregiver]

I can remember how terribly hard it was to wait for test results, for the tests themselves (my husband's care was through the VA and we often waited weeks for tests and procedures). I think it's one of the hardest things to deal with, that uncertainty and the anxiety that goes with it.

When my husband had his first Y90 (in 2018) they said he had to wait 3 months because the radiation from the beads would mess with the scans.

Ah - help gathering your wits. Yes, I relate to this! I was a complete mess after my husband's diagnosis. He was calm and unbothered and I was just filled with anxiety. What helped me was just keeping my mind occupied with projects, working really hard to just focus on the minutes and hours right in front of me and not dwelling on the future and the what-ifs. And just making sure that after my initial few months of being overwrought, I was calm, supportive and positive for my husband's sake. I tried to put myself in his position and be the person I would've wanted by my side, if that makes sense.

I think it's probably an individual thing for all of us, what works and what doesn't. I will say that Dave had three very good years after his diagnosis, and we made the most of every day. I'm sending you thoughts of comfort and strength; please know you are not alone!

All the best to your husband and to you,

Wendy (in SW Michigan)

[DancingEyes63 Moderator Caregiver]

So sorry it's taken me so long to reply. I'm so sorry that y'all are going through this. I was my husband Jimmy's caregiver and I know how very hard it is. Praying that he'll have good luck with treatment and praying for comfort and strength for you. My husband didn't have Y-90 due to his cirrohsis. He did have a Deb-Tace procedure when first diagnosed and it seemed to help the most. Hindsight being 20/20 I wish we'd done another of those instead of the Lenvima and Opdivo which made him sick and caused more damage to his liver. I have one word of advice that my husband Jimmy (we lost him in October) wanted me to share on his behalf. Don't let the cancer and treatment consume you and destroy the time you have. Not saying to not get treatment, just saying to be sure to LIVE what time you have. Spend time together doing what y'all enjoy and make lots of memories. Also please be sure to keep an eye on what treatment is doing not only to the cancer but also to his liver. The treatment was actually shrinking/killing the tumors but it was also destroying what liver Jimmy had left. So after talking to his GI and PCP and praying, we decided to stop treatment and go on Hospice so we could enjoy the time he had. It was the best decision for us. Jimmy got his strength back and gained back weight and we had from February until October 27 to LIVE. We renewed our vows, worked in the garden, Jimmy built a fence, we went to rodeos and danced. Got involved in HCC advocacy to help raise awareness about changes needed. Went to concerts and crammed as much LIVING as we could into those months. I was lucky and when his liver did shut down, he didn't linger. Sunday he was out loading 20 ft cedar posts and digging holes for them. Tuesday morning we realized his liver had shut down, he said his goodbyes to family and friends on Wednesday and Thursday afternoon he passed in his bed with me beside him. .I kept busy with the garden, canning, and planning things we'd enjoy doing. I was lucky to have friends I'd made on here to talk to and also his Hospice nurses were amazing as well as the entire Hospice staff. I was Blessed because they're still here for me. I'm still involved in sharing Jimmy's story and trying to bring about much needed awareness and change. That has been a big help and gives me a purpose and reason to go on without the love of my life. I've posted lots of posts about things we did etc. Jimmy was also interviewed as part of the One Liver To Love campaign and you can watch his videos on YouTube. God Bless. ❤️❤️❤️