kathyb
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Cathy, very touching. Your perspective is where I think it should be.
KathyGod bless you and your donor family.
From someone who is on your mom’s side of the fence with cc, a 3 month “vacation from treatment” is absolutely wonderful! Although I’ve always known what could happen within the 3 month time frame, being told I did not have to come back for 3 months was like I was given 3 more months to live like I wanted. She may really understand, but chooses to rejoice in her present blessing.
In my personal experience, outside of the people on this board who have dealt first hand with cc, it’s only medical people that understand what cc really is. They probably have never had a patient with it and don’t know how to treat it, but they seem to understand the implications. People keep asking my husband if I’m cured now. Doesn’t matter if we’ve explained this to them before, they don’t get it.
Sounds like your mom is in good hands with MD Anderson. Doctors need a presence that isn’t flustering. You are a very caring daughter. Keep on learning as much as you can.
I had a PIIC line during my first treatment of 24/7 chemo and radiation. The line was in my left arm probably about 1/3rd of the way down between the elbow and shoulder. After it was inserted an x-ray was taken to make sure the line was not too close to my heart. Mine did have to be pulled back a tiny bit.
I carried a small blue bag/purse with a shoulder strap that contained the chemo and pump. I don’t believe it was much bigger than 4×6.
Of course I did not like this as I just don’t like tubes, but it did not hurt after it was in. It was more of an inconvenience (especially at night because I like to sleep on my stomach and felt I had to lay on my back) and a constant reminder that I had cancer.I’m sorry Diane did not get better news.
God bless.
KathyDid Diane have a port? If so, maybe they just hook it up to that. I don’t know.
Lisa,
So good to hear from you. I often check your website. Understand why you “haven’t been around lately”. I feel the same way, but I keep checking for news from those such as you.
This month is my 2 year anniversary for inoperable stage 4. Your faith is an inspiration to me.
Kathy
Joann,
I was first diagnosed locally with an “undiagnosed liver disease” in July 09. Local biopsy was negative. My insurance allowed me to go to UIHC where they obtained the official diagnosis. Upon learning they only see a couple of of bile duct cancer patients a year, I requested and obtained a referral to Mayo Rochester where I have been treated. Klatskin tumor.
First came radiation and 5-FU 24/7 chemo with a pic line – Sept and Oct. of 09. No shrinkage of tumor but all stayed stable. Next I had gems/cits starting in May 10 and ending in Oct10. I was feeling great but made the decision to do chemo to ward off new tumors and keep my original tumor stable. We just don’t know what the best treatment is. I have been relying on God to open up treatments and block treatments I should not have. He has me in His hands.
My June MRI revealed that now I have a tumor on my liver and I have decided to go with a phase I clinical trial which should start in two weeks
Still feeling good, but I felt terrible those first few months. I was hospitalized twice during those months with infections. At the time I did not have much hope of ever feeling good again. But it can and does happen. I honestly do not do sick well. I’ve always been very healthy.
I had a plastic stent for the first 6 months. Then a metal stent wrapped in plastic replaced it and it has been there for a year and a half now.
Take care.
God bless.I would always ask how many patients with bile duct cancer they see and treat per year. A doctor can be wonderful and smart and have the best bed-side manner; but experience is what you need, in my opinion.
I had my yearly physical just two weeks before I started itching all over without a rash. Jaundice started in a couple more weeks. My labs were great at the time of of the physical.
One group of doctors told me I probably had the tumor for 1-2 years. The other group of doctors told me the tumor was probably there a year.
Inoperable bile duct cancer stage IV.
rodsdaughter,
Are you talking about a needle biopsy done during and as part of an ERCP? I’m pretty sure I had a needle biopsy done during my ERCP. This is how it was confirmed 2 years ago. After this I went to Mayo Rochester for another opinion and did the protocol work up for a transplant but did not quality. I don’t think they would have had me me go through the other tests if my biospy would have automatically disqualified me at that time. Maybe things have changed.
I found a discussion on this: http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=39012
My understanding is that a biopsy from outside the skin into the liver to get the samples would normally automatically disqualify a person for a liver transplant because when they pulled the needle out cancer cells could have seeded.
Someone asked the question about an ERCP biopsy, but I’m not seeing an answer.
Thanks,
Kathy
