Topic: Neoadjuvant Therapy with transplantation

Hello all. It's been a while since I've updated, but I wanted to share my uncle's most recent treatment progress. For my full introduction here's the link to my intro thread:
http://www.cholangiocarcinoma.org/punbb … p?id=10266

My uncle has an intrahepatic cholangiocarcinoma that has spread through his bile duct, but not beyond. He is receiving care at UCLA under Dr. B. (can't ever remember his full name). His team decided the best course of action would be a full liver transplant. He is on the wait list (average is 9-12 months apparently) and will undergo radiation and chemotherapy to in essense "stall" the cancer while he waits for a new liver. His doctor has told him he's in excellent shape for a transplant, so in short, we're cautiously optimistic.

This week he will be starting a radiation therapy called Neoadjuvant therapy. Has anyone had experience with this type of therapy, specifically in conjunction with a full transplant?

I'll include the link to the article we were provided describing the therapy: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2504373/


I really appreciate any feedback. You all were wonderful in my introduction thread smile

Re: Neoadjuvant Therapy with transplantation

Riddles....until our Cathy comes around to share her thoughts I thought to include some info re: liver transplantations mentioned in our blogs.  You will have to go the older postings:
http://www.caringbridge.org/visit/jhoneycutt
our Kim wrote of her husband's liver transplantation: (again, scroll down)
http://www.cholangiocarcinoma.org/punbb … hp?id=4993
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: Neoadjuvant Therapy with transplantation

My uncle is responding very well to the therapy. Were just waiting now on that all important liver.
The only issue hes been having is that the stents (spelling?) they put in dont want to stay in place. Hes already had to have emergency surgery once to replace them and their monitoring them closely now. Anyone else had this happen?

Happy fall!

Re: Neoadjuvant Therapy with transplantation

I have not heard of that. But the rest of your post sounds great! Tell him if he doesn't keep those suckers in you are going to ask the ONC to tape them in!
A Happy Fall to you also. I love this time of year. The stores are already full of Halloween, oh my! Don't know if you have Costco but they already have Christmas things in. Too early! Now comes the wait but the ending will be good!

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: Neoadjuvant Therapy with transplantation

Haha ill pass that along!

Christmas is by far my favorite holiday, but i love the lead up to it, halloween and thanksgiving smile

Re: Neoadjuvant Therapy with transplantation

Riddles...stents can shift or may have to be inserted in a difficult area.  So sorry to hear that your dear uncle is struggling with some of the unexpected, but correctable situation. 
Good luck and tons of good wishes are heading his way,
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: Neoadjuvant Therapy with transplantation

A bit of a set-back today:

My uncle is in the hospital with a significant GI bleed. They're pretty sure he developed an ulcer and may need surgery to repair/remove the damage. He's stable and receiving transfusions.
I'm assuming that because of the extensive chemo that area is weakened and more susceptible to issues like gastric ulcers.

Re: Neoadjuvant Therapy with transplantation

Dear Angel, I am sorry to hear your Uncle's latest 'development'. I had Ulcers years ago and while they can be readily fixed they are painful and your Uncle needs his strength for other things. A bump in the road but patch it with a little tar and he will be able to ride again. Wishing your family the very best and a quick healing.

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: Neoadjuvant Therapy with transplantation

so sorry to hear that you had to go through that yourself, but it's reassuring to hear that they can be readily fixed. It always sounds so bad when they start discussing blood transfusions and surgery. Thanks for the good wishes!

Re: Neoadjuvant Therapy with transplantation

Angel, mine just healed with some meds and diet. Nothing fried, greasy, spicy or with caffeine. Let us know what happens.

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: Neoadjuvant Therapy with transplantation

Dear Angel, sorry to hear about your uncle. I am a CC survivor because of 2 transplants. I would love to talk to you so feel free to call me (618-567-3247) or email me jrdunnagan@gmail.com I am glad your uncle is in the hospital being monitored because an undetected ulcer started the reason for my second transplant. I do know it is rare but can usually be treated with a graph.
Lots of prayers and HOPE-Cathy

Re: Neoadjuvant Therapy with transplantation

Angel...we have seen it frequently for radiation treatments to cause the formation of ulcers.  My guess is that your uncle will recuperate from this occurrence.  Good luck.
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: Neoadjuvant Therapy with transplantation

Thanks for  all of the support!

the GI specialist said that he's stable enough that surgery won't be necessary unless the ulcer re-bleeds (which would most likely occur in the next 24 hours). So crossing my fingers that it's able to heal itself.

jathy1125, I may take you up on that offer to talk. What type of cc did you have?

Re: Neoadjuvant Therapy with transplantation

I had hilar cholangio. Glad is ulcer under control, please call any time. I have an amazing story to share and I wouldn't be here to pay it forward if  it wasn't for God, 2 strangers and Dr. Chapman, telling my story is one way I can honor there memory,  kindness,  amazing doctor skills and heart.
Talk soon.
Lots of prayers and HOPE-Cathy

Re: Neoadjuvant Therapy with transplantation

Thanks, jathy! My uncle has an intrahepatic cholangio.

Good news to report as well smile They were able to stop the bleeding. The ulcer was still oozing though so they put in a coil to stop that. He's doing very well and is being moved to the regular hospital floor tomorrow morning!

Thanks again for all the support. These bumps in the road always throw me for a bit of a loop.