Re-Introducing Myself

[DancingEyes63]

Good morning. I know the ones that have been on here for awhile know me but wanted to introduce myself to those newer to the site. My name is Sharon. Dancing Eyes was the nickname my husband Jimmy gave me because he said my eyes changed color and danced. I discovered Blue Faery a couple of years ago right after my husband Jimmy was diagnosed with HCC. I'm so glad I did because of the support, love, and the information that we got from everyone here. I was Blessed to make some real friends on here that are friends off here as well. Jimmy was in treatment for a year but unfortunately none of the treatments worked. The treatments were also doing more damage to his already damaged liver due to years of cirrohsis and Hep C. So after discussion with his GI (and against the recommendation of his oncologist who was not an expert in dealing with liver cancer) we decided to stop treatment and go on Hospice. At that time he was very sick from the treatment and the oncologist told me that I was killing him and he'd be dead in a couple of weeks. His GI who had been treating him longer and had diagnosed the cancer said the treatment was destroying his liver. His platelets were so low they were practically non existent at that time which is very scary when you have several banded esophageal varices. So we went on Hospice and he started feeling better and his symptoms and pain were controlled so his quality of life was greatly improved. You can read my old posts about some of the things we did during that year. Jimmy got involved in liver cancer advocacy and fought to raise awareness and we LIVED every day to the fullest right up to the day his liver finally shut down. He passed quickly and peacefully at our home with me next to him three days later. He said HCC didn't beat him because he LIVED and didn't let cancer and dying dominate that last year. In one interview he gave for the One Liver To Love campaign, he says that you can't have a pity party because it is what it is. He encouraged everyone to cherish the time they had and make the most of it and that's what he did. He also asked me to please keep fighting to raise awareness of HCC and to share his story. So that's what I'm doing. Andrea has asked me to be one of the community moderators so please don't hesitate to reach out with any questions or if you just need to an ear. Sharon ❤️

[Iggy08713287 Patient]

Thanks, sorry again about Jimmy. I lovethat he had the courage to choose Quality of Lige. Sharon for being here for other people. It helped me when you and I talked recently. Would love to hear from others and their experience with HCC.. it really helps us having information from people who have experience.

[DancingEyes63 Moderator Caregiver in reply to Iggy08713287]

Good morning Victoria. I'm glad I could help and I'm here anytime. When we first found out about Jimmy's cancer, I knew nothing and the doctors weren't helpful at all. I was so glad when I found Blue Faery because I found people who understood what we were going through. Most of the information and support we received was on this site. It helps so much to hear from people who have experienced something instead of just reading statistics and information about a drug or procedure. Jimmy was the bravest man I know and it was important to him to try to help anyone dealing with HCC and to raise awareness of it and the difficulties of diagnosis and treatment. You hang in there and let me know if there's anything you have a question about. Sharon ♡

[Iggy08713287 Patient in reply to DancingEyes63]

thanks. I did have one question. You mentioned that you knew or heard of people who Lenvima helped? I am stage 4 so I am sure it makes a difference plus I am very sensitive to medication.

[DancingEyes63 Moderator Caregiver in reply to Iggy08713287]

Good Morning Victoria.

I am so sorry that its taken so long to respond to this. When i saw the notification, I though ti was the one that i had already seen. Yes, there have been a few that have said they had no issues with Lenvima. I think a couple of them took the Lenvima for several months and then switched over to one of the Immunotherapy Infusions for long term. Do you have cirrohsis or other liver damage besides the HCC? If so, please make sure that they are monitoring your liver function no matter what treatment you are receiving. Jimmy ran into a serious issue because this was not happening. I think we tend to think doctors are perfect and we should not question them. They are human just like we are and anyone can make a mistake or miss something. That is why its so important to be your own advocate or that your caregiver is your advocate. You may also want to search and read through the older posts on here if you haven't already for any other information on Lenvima. I have often found that even if there is no one than can answer my question, someone in the past has answered it or posted about it previously.

Hope that I was so help to you.

Sharon❤️