Topic: New to site

Dear all, I am so encouraged by your post and your stories. You all have been a help as well as a blessing.
My husband of 26 years was diagnosed in Nov. 2011 with CCC. His condition is stable. He is in cisplatium and Gemzarand is tolerating well. We want to be more aggressive. Wondering if anyone can advise on the following:
1. Bland embolization vs chemo embolization. Interventional radiologist wants him to do the bland. We have lots of questions.
2. Treatment centers. We are in the NYC area and have opted not to go to memorial Sloan and are looking at John Hopkins or Dana Farber. Wondering if one is recommended over the other for CCC
3. Platelet count has recently dropped after this last treatment. Should we be concerned?
4.  Sleep, my husband can't seem to sleep. Any recommendations would be appreciated.

I am thankful for this community. I will be praying for all, please pray for us, I know God is going to give us the victory.
EDH

With God all things are possible. Believe!

Re: New to site

Dear EDH, welcome to or extraordinary family but sorry you had to join us. While I cannot comment on the Chemo as my husband never had it, I would suggest you ask the doctor about something to help your husband sleep at night.
Our Jim Wilde, I believe uses NY Presbyterian (SP), not sure of the exact name but he swears by it. On our Home page is a Category of Hospitals and you will find some great ones in your area. I also know you will get more answers tomorrow when members wake up! I am wishing the best for you and your husband. We strongly believe in second and third opinions. Please keep us posted as we truly care.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: New to site

Hi EDH,

Welcome to this site. I had not heard of bland embolization. I looked it up and it sounds similar to the procedure my daughter Lauren is having next week. Her procedure is called Theraspheres. Tiny glass beads of radiation are shot into her tumors through an artery in her groin. We are thrilled she is able to have this procedure. It has lots of promise.

Lauren's platelets always dropped when she was on Cisplatin. I think most people's do when they are on that chemo drug. It is one of the rougher chemos to handle.

Every night, Lauren dissolves an Ativan in her mouth and sleeps like a baby.

I do not have any knowledge about the hospitals in NYC. I am sure many will voice their opinions.

I have posted in detail about Lauren's Theraspheres and the mapping procedure she had a few weeks ago. Just look for it under General Discussion. I was not happy with some of her treatment that day and I told all about it. Feel free to ask any questions about anything. We are all here to help each other. Take care and best of luck.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: New to site

This is the way I understand it:  Bland portal vein embolization involves cutting off the blood supply to the liver whereas chemoembolization delivers drugs directly to the artery supplying blood to the tumor. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: New to site

Thank you all. I will keep you posted and will share whatever I learn.

Marions, thanks.  My concern with the bland embolization is what happens to the dead cancer cells and potentially the dead lobe of the liver?  The Dr who recommended this is on vacation, hopefully he will be able to respond when he returns.

Pam thanks for the sleep recommendation.
Lainy,thanks for NY Pres.  Someone else recommended them highly.

Thank you for your support, it really brings tears to my eyes just to see the responses already.

Praying for a cure and praying for all of us.
Peace to all,
EDH

With God all things are possible. Believe!

Re: New to site

Hi EDH,

Welcome to the site. Sorry that you had to find us all and I'm sorry to hear about your mum. But thats good that you've joined us all here as you will get a load of support and help from everyone.

I can't help personally with the chemo or embolization questions that you ask as my dad never went through them. But I know that others will chime in soon with their thoughts. As to some treatment centres etc, here as some links that may be of use to you.

Major centres in the USA -

http://www.cholangiocarcinoma.org/major … enters.htm

And a list of centres and doctors created by the members here -

http://www.cholangiocarcinoma.org/punbb … hp?id=3126

Please keep coming back here. We are all here for you and we care.

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: New to site

EDH....our bodies are incredible maschines. The tissue is absorbed.
In kidney transplants for examle the diseased kidney (in most instances) is not removed. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: New to site

EDH:
While I don't think they called my last embolization a bland embolization, I had something similar done in March to prep me for surgery.
First off, the tumor is located at the very top of my liver and has taken out 2 of the 3 hepatic arteries. It is wrapped partway around the vena cava which is the problem. And because of where it is, even tho it is small, will require removal of the entire left lobe of my liver. So they decided to do an embolization to prepare my liver. They blocked off the blood flow to the left lobe, including the tumor, and are hoping the right lobe is growing while the left is dying. It's been just about 2 months, and Wed. I find out how it worked.
They don't seem to be too concerned about the dying part of the liver. I'm a little concerned about that being dead in my body, but I'm taking my cues from the docs. If they aren't concerned yet, why should I be? The side effects were pneumonia because she nicked my lung when she did the embolization. But I feel no discomfort out of the ordinary.
And as I stated in the other post, I think NYP or MSK are great hospitals.
Can I ask you why you have opted not to go to Sloan Kettering?

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: New to site

EDH,

I had never heard of "Bland" embolization until you brought it up.

I did well on my chemoembolization. The procedure went smoothly, although the doc said he couldn't get chemo beads everywhere he wanted because my previous chemo (only 5 treatments gem/cis) had already damaged some of the blood vessels.

I had major pain for a while. It was supposed to be just an overnite stay but I got an extra night because we couldn't get pain (in the liver) controlled via oral meds until the 2nd day.  Pain gradually dissipated after 4-5 days, then it was gone.  I've been a little tired, but nothing like it was with gem/cis.  I'm scheduled for a second treatment in a couple of weeks.

-Byron

"Pull down your hat, strap on your spurs, and tighten the cinch. Let's ride this mustang."