Linverma : hello, I hope you are all... - Blue Faery Liver ...

Blue Faery Liver Cancer

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Linverma

Iggy08713287 profile image
Iggy08713287Patient
5 Replies

hello, I hope you are all hanging in there ok. I still haven’t tried the Linverma. I have had so many bad side effects from all my treatments over the last 18 months that I am very reluctant. High blood pressure has been a bad one. Ended up ambulatory to the ER once. Is there anymore info out there since my last post? I am a stage 4 and it has gone to my pelvic region.

Iggy

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Iggy08713287 profile image
Iggy08713287
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DancingEyes63 profile image
DancingEyes63ModeratorCaregiver

Good morning. If you're talking about the Lenvima, my husband was on it for about 3 months. There are people who have had good results with it and no side effects. Unfortunately Jimmy was not one of them. He developed horrible sores in his mouth and throat almost immediately that made him unable to eat. The oncologist prescribed two different medications to help but they didn't clear up until he stopped taking it. He also was very nauseous and tired. He lost about 50-60 pounds during that time period. When they did the MRI after three months, the number of tumors in his liver had tripled so it didn't work at all. This was just his personal experience and I certainly don't discourage anyone from trying it because as I said, I know some that it has helped. Just want you to be aware of the possibility of side effects if you do decide to try it. Please let your oncologist know about any mouth sores as soon as they develop.

Due to the side effects during his year of treatment and he fact that none of the treatments besides the original Deb-Tace procedure had actually worked/helped, we made the difficult decision to stop treatment so he could enjoy the time he had left without all the side effects. It was the right choice for us and Hospice was such a help not only in improving his quality of life but in support, etc for me as caregiver as well. We were able to spend his last year with him stronger and free of pain so the better quality of life let us enjoy the time he had and make precious memories.

You're in my prayers because it's so hard to know what the right decisions are and it's different for everyone. I'm always here if you have any questions or just need an ear.

I encourage you to ask your oncologist the hard questions as to how much time any treatment may give and how it will effect your quality of life so you can make a truly informed decision. Also if you can't get a straight answer, you can look up results of the clinical trials on the specific drug. I wish I'd done that before we started some of the treatments.

Sharon ❤️

Iggy08713287 profile image
Iggy08713287Patient in reply toDancingEyes63

thank you. I am sure some have had good results. It just seems I have not been lucky with side effects. I have had to deal with a lot of them and my quality of life has been lousy for 18 months. I really don’t think Lenvima is going to do it and if it stops progression I will be sick all the time. My BP had been terrible with E R visits and so forth. It’s just that it is finally normal. I am stage 4 so not much time but freer time for a little while anyway.

DancingEyes63 profile image
DancingEyes63ModeratorCaregiver in reply toIggy08713287

I hate it but I understand. That's basically where my husband was at. He tried the treatments because he knew I wanted him to try anything so I'd have him longer. I didn't understand what that meant until he was sicker and sicker from the treatments. If you do decide to get on Hospice please know that you can always get off if you decide to give treatments another try. When our GI recommended it I thought it was the end but I was wrong. Jimmy felt better because they were managing his symptoms better so we were able to do lots of things that last year. Even renewed our wedding vows. Praying that you'll be able to decide which path you need to take next. Sharon♡

Iggy08713287 profile image
Iggy08713287Patient in reply toDancingEyes63

thank you so much. I am so sorry you have been through this already . But it means so much to me that you can share your story because I know you hear me and you are talking from your heart❤️❤️❤️

Victoria

DancingEyes63 profile image
DancingEyes63ModeratorCaregiver in reply toIggy08713287

Thank you Victoria. I am still grieving over the loss of my husband but it was important to both of us that I share and talk about what we went through so hopefully would help or make someone else's journey easier. Liver cancer is awful and I sincerely want to help any way that I can, even if all I can do is listen. I do understand what you're going through. Please reach out any time and I also answer private messages. Sending prayers and love. ♡♡♡

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