holly22a

Dear, dear Katya, we all feel the pain and anguish in your letter and we all want to help and offer you support. Your mother is blessed to have you to love her so much even as she suffers. I hope the doctors are wrong about the situation. oftentimes people really surprise their docs and live a lot longer than they thought. Let’s concentrate on getting her well in the hospital. You will be in many prayers tonight and in the coming weeks. Please keep us all posted.

I’m just a patient, not a doctor, but I can tell you that the mot likely scenario is that all consults will say the same thing – – get started on a chemo regimen, and the front line, the first choice one is the combo cisplatin/gemcitibine. It is maddening to wait and you will all relax once chemo is started because your fright will quickly turn to fight. It always happens, you will feel energized. I had to wait two weeks after diagnosis because of my particular cancer being a hybrid and they wanted more and more pathology reports and stains, so it was the docs saying wait – – it about drove me crazy. That’s just my experience. I doubt there would be any other course of action proposed first, but there might be different combinations of chemo proposed and you might want to take the time to learn about that first. Also there are different opinions on dosing levels. Otherwise, I’d get going.

woot, woot! happy dance!

I am so in favor of death with dignity. I want to go with forethought and with decision, with a choice born of my will and at a time of my choosing. Wish it were available in DC.

I had the radiation beads and could not eat anything at all for a week and little for the next week. Don’t remember the taste, though. I have heard of a metallic taste from a lot of folks with chemo. But yes, definitely liver pain after radiation. I assumed it was cells dying as I also had liver pain during chemo when the tumors were shrinking.

Thinking of you today, Lisa, and what an ordeal the hives and itching are for you. I pray they stop soon. It could well be a new (to you) food allergy. When my youngest had severe food issues they put him on lamb and white rice for three weeks and then slowly, one week at a time, added back foods. He turned out to have a problem with milk protein. Lamb and white rice are supposed to be the least offensive foods you can eat, allergy-wise. (although lamb chops are not cheap!) Keep us posted, I worry about you. xo

thank you Percy. interesting.

Transplants are not the answer for ICC. The protocols are very strict and very clear and almost nobody with cholangiocarcinoma can qualify. It has to be small and hilar, I think. Besides, if you really research it, the anti-rejection drugs required after transplant often lead the cholangio to turn up elsewhere in the body, where the body’s own defenses had been fighting it before. I have been told this by both Dr. Kato and Dr. Facciutto, top CC surgeons and liver transplant surgeons in NYC. So it is a false hope for almost all of us to go chasing the dream of a transplant, at least for now.

On the other hand, a good response to chemo and you may qualify for liver resection surgery. It has happened many times, and this can greatly prolong your time and health over chemo alone. And even chemo, if well-tolerated, can buy a ton of time. We are all different, and as Lainy always says, we do not have an expiration date stamped on our feet! Good overall health is a tremendous asset in this fight.