Introduce Yourself!: To best serve you... - Blue Faery Liver ...

Blue Faery Liver Cancer

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Introduce Yourself!

AndreaWilson_Founder profile image

To best serve you, we want to know who you are. Are you a patient, a survivor, a caregiver (includes spouses, family, friends)? For an extra special touch, show us a photo of yourself, your dog, your cat, whatever you like.

For more privacy, mark the 'Only followers in my community' under 'Who can see my post?'

11 Replies
spazure profile image
spazureModerator

Hello all! My name is Azure (but you can call me spazure, my nickname and username here). I'm a 30something parent living with their spouse and 3yr old child. I enjoy knitting, crochet, and being more fond of toddler cartoons than is rational for one of my age. My current loves are Daniel Tiger's Neighborhood and Doc McStuffins, although my true love will always be Care Bears.

My exposure to liver cancer was brief, but extremely painful. My father was diagnosed 2 weeks before we found out (he kept it a secret, wanted to pass without worrying us...), and by then he was already in the final stage. We took him to the hospital on his birthday in June 2017, and he left us 5 days later. As such, I have very little insight into treatments, because while I heard about several -- we never had a chance to try any. I'm always happy to help people navigate confusing medical jargon and point towards excellent resources, however.

Mostly I'm here as a fellow caregiver to make sure everybody is kind to one another, safe, and nobody has to go through this alone.

Hi Everyone, I am a Blue Faery Board Member and also work in the healthcare industry doing monitoring & evaluation, quality assurance, and process improvement

My mission is to improve healthcare, and place the patient at the center of the focus!

AndreaWilson_Founder profile image
AndreaWilson_FounderAdministrator in reply to Matthew_Loxton

Welcome, Matthew!

Curly_Girl profile image
Curly_GirlCaregiver

Hello everyone! I'm Wendy, and I'm a caregiver to my husband, Dave, who has primary liver cancer (diagnosed in March 2018). He is active here as well.

He's feeling pretty well at the moment (taking Nexavar) so my main caregiving is making sure that he has appealing food to eat (I love to cook!) and helping him stay active. We go to a local gym four days a week to lift weights and get some cardio, and we also get out and walk around our small town in southwest Michigan when the weather permits.

We live in a house that was built in 1900 and we have been slowly renovating it since 2017. It's been nice to update and clean her up, while maintaining those historical elements that make her so special.

Dave and I are both positive, upbeat people and we are fighting this with our heads held high and as much good humor as possible!

Hi,

I am a 66 yr male, clean, sober, faith centered bachelor/businessman.

Told I have a grapefruit sized tumor on segment 6 of my liver this month. I am trying to find clinical trials in COLO. that involve ablation and immunotherapy rather than surgery and "conventional" sectioning/transplant treatment offered by surgeon led "multidisciplinary teams". Surgeons sell surgery, I lost 5 of my family in 9 months to chemo and radiation before they even made it to surgery in 1989.

My Family group is counting on me finding the least intrusive paths to cure possible. My "surgery"teams say TACE or Y90 with resectioning is the "only" cure available, then, I "might" qualify for a transplant. Not encouraging, and they want to move fast, before I can evaluate options.

I believe there are options that can hold cures that involve ablations and/or immunotherapy.

Clinical trials, advocacy groups, and support groups have helped me find the path in 2007 when I found cure for Hep C with interferon, ribavirin, and incivek; the most horrible drug tests I could imagine... oncology each week for procrit injections and blood transfusions. 6 months of treatments and a1 1/2 years to recover.

But, I made it and was cured, and must walk the path again.

God bless,

FC(Skip)Newman

Natti52 profile image
Natti52Patient

Good afternoon.I am in the process of being diagnosed with liver cancer.I am 68 yrs old I have Ms.I had the AFP test it was high.And a CT scan that showed a small tumor in my liver.Thank you for letting me join your group.

Hello Everyone! I am a 65 yo Grand Pa and Im dealing with late stage liver tumors. Ive had hep C for years and for the first time in my life I have insurance because I cant work and finally got the $17,000 hep medicine. Better late than never but it doesnt kill the cancer.The (toxic) immunotherapy treatments and feeling like crap is where I am right now. Looking for alternatives. I have lived a subsistence Bush Alaska life style which now is not possible and leave my burdens on my wife and kids. I still share the experience with others( maybe you) when possible here on the Yukon River. I hope to learn from your cancer experiences and information and I hope to share the same, Happy Mothers Day toall you beautiful Mothers! !

Hello Fenbendezol,

Which immunotherapy are you taking right now? All therapies are advanced HCC are palliative but there are many choices.

~Andrea

Gran5 profile image
Gran5Caregiver

Hi I am Gran5. My husband was diagnosed in February with HHC. He has a 19 cm mass on left lobe of liver. In April when finally going to see oncologist he had a massive heart attack. Placed 3 stents and then had a bleed in his cancer and had to embolism his vein. Had a scan last week found it has spread to section in his right lobe. So now we go see what they are going to do. The waiting is awful

Hello Gran5,

I'm so sorry. The waiting is terrible. Are you seeing an oncologist who has extensive experience with HCC? Unlike most cancers, HCC is a disease within a disease so managing it is very challenging. Feel free to reach out to me directly.

~Andrea

andrea@bluefaery.org

DancingEyes63 profile image
DancingEyes63Caregiver

Hi. I'm Sharon. My 61 year old husband has had Hep C since mid 90's. Between the Hepatitis and years of heavy drinking, he developed cirrhosis. He was never able to get treatment for hepatitis. When he had insurance that would cover, he did want to risk losing the job he had due to side effects of treatment. In the last few years, he's also developed pancreatitis. Couldn't get him to stop drinking because had a Dr tell him that he was dying cirrhosis so he figured it didn't matter. Last December, he was having terrible pain in stomach and I got him to to ER. They did a cat scan and found he had diverticulitis. They also saw a small lesion on his liver. He spent a week in the hospital recovering from diverticulitis. Sent a referral for him to see GI specialist regarding the cat scan. We live in a rural area and closest city only has 15 thousand so any specialist are very booked up. They did another cat scan before he left the hospital and this time didn't see anything. So his appointment with GI was 2 months away. In mean time, started having terrible pain in stomach and chest. At ER couple more times. Thought it was heart related and ran lots of tests but all negative. His primary care Dr was also running any tests he could get approved to try to find cause of pain. Even had a mammogram. Tried to schedule MRI but insurance didn't approve. Finally was able to see GI who sent for tests hoping to be able to start hepatitis treatment. His liver enzymes were high so he had a Tumor marker done and it was high. This time they approved the MRI. Saw the GI on March 1. MRI done on 88th which confirmed lesion was 5cm tumor with 3 very small satellites around it. Due to cirrhosis not a candidate for resection, not enough healthy tissue. On March 15, had a deb-Tace procedure to hopefully shrink the tumor. GI did colonoscopy and endoscopy in April and discovered 2 large varicies that he banded. Also removed about 15 small precancerous polyps from colon. Left about same number because bleeding too much. Also removed a couple of bigger polyps that felt would likely become cancer. Saw first oncologist in Aoril. He didn't recommend starting any treatment. had a cat scan and it showed the tumor has shrank. Said to wait and have MRI end of June. We decided to see another oncologist next visit due to personality clash. End of June he had repeat MRI. Original tumor was still smaller but 3 satellite tumors had grown and now two more in different quadrants. Oncologist recommended Lenvima and also to see liver specialist to see if he thought his liver could take another deb-Tace procedure. GI specialist had started him on an antibiotic that was supposed to help combat HE. He started taking it and terrible side effects. He was already nauseated and in pain . Liver specialist has sent referral to Interventional Radiologist but we haven't heard from them yet. The antibiotic was causing all kinds of gut issues so after talking with PCP about limited benefits of drug weighed against the side ef Ifects decided to discontinue and start lactalose instead. Started the Lenvima and at first wasn't bad. But by second week was developing sores and ulcers in his mouth and tongue. Oncologist prescribed mouth rinse that was supposed to help and told to eat bland food. He was already doing that because of nausea. The last few days his mouth is hurting so bad that he can't talk eat, or hardly swallow. Popsicles, ensure, and pudding is all he has been able to eat. He's also has a couple episodes of dizziness and heart racing and irregular heartbeat. This morning he scratched his face and took forever to stop bleeding. We sat there crying at the table and he said if this is what I have to go thru to live a few more minths, it's not worth it.

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