willow
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Suzanne,
So sorry to hear all your father has been through lately! I’m thinking if you and your father during this rough time.
WillowAlso, Alan,
Try to copy your introductory post and put it as a new post under the “Introductions” thread. That way, many more members will see it.
WillowDear Alan,
You are coming to a good place for support and information. Sounds like you don’t have an official diagnosis of cholangiocarcinoma but are very anxious to know what’s going on…understandably ! Glad your Dr didn’t mess around and is getting you to bigger hospital but most if the moderators on this site rec sending your test results to a handful of places (doctors) in the nation that have MZuCH more experience with these rare bile/liver diseases. You don’t necessarily have to visit in person but can start just by having the local hospital email all your scans and test results and initial diagnoses for a 2nd opinion.
This is the hardest time…then, once you have a plan in place it gets much easier mentally. No reason to think your life is over! Many simply see it as a chronic condition. For now , focus on nailing down the diagnosis.
God Bless,
WillowAmazing how much time it takes to manage insurance and medical appts! So glad all is going ahead w clinical trial and I’m keeping my fingers crossed for you to qualify for this, Kris! Meanwhile, keep on doing those things that bring you joy!
WillowDianne,
My deepest condolences on the passing of your beloved husband Chris. Thank you for sharing his obituary with us. It touched me to read about his passion for nursing, his big family and the gratitude he felt.
WillowHi Lee,
Your story is uplifting as is your attitude ! I’m from Northern CA too. You’re only the 2nd person on this board who swears by med marijuana. It’s also good for keeping appetite up when there is none.
Tried to get my elderly uncle to try it again for shingles but he didnt get relief. A few of my patients in the dental office use it as well for pain mgmt.
My sister is the one w CC and so far she hasn’t had consistent pain. When she did have it, she was able to manage w the meds they gave her or Tylenol.
Your energy is beautiful and I wish you well.
WillowWow, Gavin. That goes along with the medical report on same cause. Pretty scary that these people were not protected from known carcinogens and Japan is not a 3rd world country where you might expect to see shoddy labor safety practices. Thanks for sharing.
Willow
PS how’s you Mum? I spent a nice weekend w mine though her breathing is a bigger issue all the time. We went to the coast and to a beautiful botanical garden. My Dad is now on hospice and takes most of my attention. He’ll be 90 in May and its a relief to have hospice helping out, though he seems really stable now and ate well today when I was there for lunch. He’s not really sick or anything, just fading from Alzheimer’s and getting very thin. Luckily he’s comfortable and generally happy. Take Care!Kris, this sounds promising and I am glad you like your new oncologist. Keeping you in my thoughts and prayers for success with this medication. Willow
My sister stats:
Age 49 at dx in Aug ’12
Only symptom pain at night upper rt abdomen (never has had jaundice or stents)
Intrahepatic CC possibly a combo type hybrid w Hepatocellular carcinoma
Stage 3 Main Portal vein invasion and multiple tumors in liver but no lymph nodes or distant mets at dx
Chemo gem/Cis tried short time (3mos) but too hard on blood counts and so never completed a full cycle and meanwhile tumors grew.
Radioembolization Jan ’13
Waiting to have scans in April
