tiff1496
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marions wrote:Additional information
Appears that physicians within certain institutions set their own criteria by loosely following the criteria for Hepatocellular cancer transplants.
It is a team effort including transplant surgeons. Patients are evaluated on a case by case basis. Criteria include positive response to therapy and non-rapid disease progression.
So, it appears that each case is different and each patient is decided on individually.
Hugs,
MarionI agree with this Marion! I was talking to Methodist, and they told me they had a woman with intrahepatic CC, and she had been turned down for transplant at 3 centers. She went there with no hope. The agreed to list her for an extended donor. 3 years later, she is still doing very well, and cancer free!
They also do SO much testing there, I went through it all. If you don’t pass a test, you don’t get listed.dmj4ctj wrote:I am SO excited for you Tiffany!! I’m really glad they’ve expanded the criteria so that more people have a chance of beating this disease. BTW, whatever happened to the option of a living donor transplant?
DianneThank you!!!
My surgon believes I would do better with a whole liver, and said living donor wasn’t really for me.Lainy wrote:Tiff, your killin me, in a good way. Everytime I see that you have made a new post I just jump! It’s like I am waiting for a new baby to come!I’m ready to deLIVER this baby! LOLOLOL
Thank you all for the thoughts and prayers.
Thank you all! Today I’m going to pack a small bag, I don’t think I will need too much until after I get out of the hospital. And because we will be flying on a small jet, we can’t take a lot of stuff with us.
dmj4ctj wrote:This discussion is fascinating to me and I have a question. I understand why a liver transplant is not an option when the CC has metastisized outside the liver, but why not do one for cancer that appears to be completely contained in the liver as in ICC with mets to liver?From what I know, some places will consider a transplant if it is completely contained to the liver.
When I first learned I have CC I had mets in the left and right lobes. Thankfully chemo has cleaned it all up, and now I might be getting a new liver any day!God is working it out for me! I’m excited!
I’m worried they will open me up and find more. What is everyone’s thoughts on this? I have had 2 clean PET scansRight now I’m in Alabama. I have 3 people that own their jets and are willing to take me out there day or night. They are on call to me. There is also 3 flights to Huston, but that would all be in the timing of when they call me, if I use them (United I think).
I might head out there around the holiday and wait.I also like the odds of this! Dr. Javle said if it was to develop that it could take 20-30 years. He also said there will be better treatments.
I will try to keep yall updated! If not, Lisa is in the loop! So she can post for me!
Marions- Isnt this all crazy! Just after our emails!
Thank you everyone for your support!
Dorien- yes that is me!
stage 4 and it was / is only in the liver.Thank you Marion! I started a new topic about my plan! I didn’t want to take over Jason’s. :o)
Jason- If it hasn’t spread, then you should take to the doctors about transplant. I see Dr. Javle at MD Anderson, and he helped me get on the list at Methodist!
Hi Jason!
I don’t have much more too add. Looks like you have got some awesome advice!
Has it spread from your liver? If not, you might want to look into transplant. There are a few good hospitals that will transplant CC patients. I have been on the list for months.
Anyways, your not alone! Hang in there.I would get another opinion. I’m being see at MD Anderson in TX! Dr. Javle is my doctor, and I love him! A lot of people on here talk about him.
I’m stage 4, and my last scan showed no cancer. There is hope!positiveattitude wrote:Hi Tiffany,I just started GTX and your post is inspiring! Hope you are doing well. Just finished second round. The steroids are keeping me ‘up’ for now! I find I am craving carbs which is completely different than my last chemo when I couldn’t eat anything!
I truly wish for your good health.
Positive Attitude
Thank you!
I’m still on it, and doing great!
How are you doing on it?
