Grateful: I just wanted to encourage... - Blue Faery Liver ...

Blue Faery Liver Cancer

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Grateful

RolloMay profile image
RolloMayPatient
10 Replies

I just wanted to encourage everyone today to stay strong and try to find gratefulness even in the hardest of days. We all know what each other is going through and that its not easy.

10 Replies
AndreaWilson_Founder profile image
AndreaWilson_FounderPartner

Remember how I mentioned my daily gratitude journal in a previous post? On really bad days, and we all have them, I'll write, "I'm grateful I'm breathing today." I'm sort of chuckling as I write this but it's my go-to when I cannot think of anything else after having a bad day. HTH. 💙

DancingEyes63 profile image
DancingEyes63Caregiver in reply to AndreaWilson_Founder

Yes sometimes breathing is all we can come up with. Sometimes it's that the cats did something to make me laugh or that I saw a pretty butterfly in the garden. Today I was grateful that I got the Christmas lights hung up like Jimmy had planned. They looked pretty and made me smile. Last Sunday I was grateful for chocolate gravy. 😂❤️

DancingEyes63 profile image
DancingEyes63Caregiver

You are so right. Jimmy always said that you could find something in every day to be thankful for if you just looked. Some days it may just be that you are alive. He found something even on the bad days though. One of his favorite singers, Ray Wylie Hubbard said if your gratitude outweighs your expectations then you will have a good day. That is true, be grateful for each Blessing no matter how small. Since losing Jimmy, I've started keeping a little journal so I can remind myself of everything I have to be thankful for each day. So I don't let my grief over shadow my joy. So I make it a point to find something that has made me happy each day and write it down. Sending love and positive thoughts to all impacted by HCC. ❤️❤️❤️

Christmas lights on wooden fence
Iggy08713287 profile image
Iggy08713287Patient

Thank you, I was just lying here thinking about my journey and wondering what lays ahead. I was recently told that the 10 rounds of immunotherapy didn’t work.,I am being offered a trial which is the first one to go to humans. Does anyone have any advice. It feels like a last resort and is hard to deal with after 18 months of trying to get somewhere with transplants Y90 and 2 surgeries.

AndreaWilson_Founder profile image
AndreaWilson_FounderPartner in reply to Iggy08713287

I'm a huge proponent of clinical trials--if they make sense for you. It sounds like you're talking about a Phase 0 or 1 trial. Here's some information from a course in my other company:

How clinical trials work. Clinical trials have different phases and they're important to consider because they affect the potential risk and benefits to you.

Phase 0 trials use small doses and just a few people to answer really basic questions, like whether a new drug reaches the tumor in the human body. And these have low risk, but also very low likelihood of benefit, although they may help some patients with very advanced illness. They are not required by the FDA and are not conducted for all treatments.

Phase I trials are designed to find the highest dose that can be given safely. They are conducted in major cancer centers with a small group that remains under very close observation during treatment and because these trials are not meant to test effectiveness, they are less likely to prove benefit and tend to have higher risk of serious side effects. A Phase I trial is designed to find the highest dose that can be given safely.

I've known several people including one HCC patient who participated in a very early stage trial that saved his life. But there are no guarantees. Do you know the ClinicalTrials.gov ID number?

Blue Faery has an HCC-specific clinical trials finder on this page: bluefaery.org/clinical-trials

~Andrea

Iggy08713287 profile image
Iggy08713287Patient in reply to AndreaWilson_Founder

thank you Andrea, the drug is BLU-222.

IND 158243…. The study is in Sarasota Fl where I live.

The phase is 1/2 Study of BLU-22 in advanced solid tumors..

it’s a really really had division because I am not sure about the end result. Since the Immunotherapy therapy didn’t work I don’t know what else I am looking at from treatment.

AndreaWilson_Founder profile image
AndreaWilson_FounderPartner in reply to Iggy08713287

Hey Iggy08713287 ,

The company behind the study--Blueprint Medicines are good people. But this study is not specific to HCC, only solid tumors. They were focused on HCC specifically about four years ago, but I believe they had limited success. Phase 1/2 studies often have limited benefit. Before committing to this study, my personal opinion would be to look at other HCC-specific interventions. Have you used the tool on our Clinical Trials page to find studies near you? bluefaery.org/clinical-trials

~Andrea

Iggy08713287 profile image
Iggy08713287Patient in reply to AndreaWilson_Founder

Hi Andrea, thank you for the information. I do see that this study isn’t specific for HCC. Many of the other studies have been ruled out already.

My study is at Florida Cancer Specialistfor BLU-222 . I believe I was referred here by my Oncologist because I have had all treatment options with no positive results. Resection and ablation, Y90, Liver Transplant evaluation, 10 rounds of immunotherapy with Tecentriq and avista( spelling) … all failures. My cancer is growing faster than anticipated. Dr Patel in Research explained to me that they are looking at this from a different perspective. It concerns my having a specific gene or molecule ( not sure of wording there) that they have found to respond better with this medication. My options are dwindling down and we are just looking to possibly buy me more time to live.

I took your opinion very seriously and looked up 8 studies. I will ask Dr Patel to explain more to me before my start date of January 4th.

Sincerely

AndreaWilson_Founder profile image
AndreaWilson_FounderPartner in reply to Iggy08713287

Just by using the tool, I found several other studies in your area!

Joschua profile image
JoschuaPatient

Thank you all for your positive input and wish you all the best and a good new year. It's so mazing to be alive I'm thankful for every day. Suffering is in the human make up and makes us human. As hard that can be it is the truth. What I'm suffering is because I made some bad decisions in my life and I wish to correct them but I can't. So still I'm grateful to be alive. Happy new year

Fritz