MD Anderson visit

BTW, I will likely to be going to MD Anderson to get started on a MEK/Pazopanib trial next week that will be continued at Johns Hopkins. Any suggestions as to other docs I should try to see down there while I’m at it? I”m scheduled to see Drs. Zinner and Shroff.

Thanks!

Holly, I am also taking xeloda but am also getting Oxalaplatin. I just finished my 1st 2 weeks of xeloda so will be off for a week and then back in for another Oxalaplatin & another 2 weeks of xeloda. I am anxious to see the bloodwork as mine was really low with Gem/Cis and my markers were very high too. I am hoping to qualify for a trial soon. Waiting is all we seem to do! I pray that God will provide the perfect treatment for each of us.
Pattimelt

Dear Percy,
I am praying every day for new immunotherapies for us all! I cannot do the TIL trial because my counts are rather permanently low now. But I’m still thinking radiation and rfa as soon as something shows up to radiate. Meanwhile, since my markers have quadrupled this summer, I am thinking xeloda, the one chemo option I have with low counts already. I have one onc who says xeloda alone is not effective, but another who says it is! Wow, so many decisions to make for ourselves. Please keep us posted about your therapies, as I always look for your postings on the boards. Keeping you in my thoughts and sending much good energy and love to you.
Holly

Hi everyone!
I was told by two great surgeons (Dr. Kato at NYP and Dr. Facciutto at Mt. Sinai) both in charge of major liver transplant centers in NYC, that transplants for CC are a problem because you must take anti-rejection drugs for the foreign liver and these drugs suppress your immune system further ….. and the cancer just comes back in the new liver and everywhere else. Dr. Faciutto told me that as I had no cancerous lymph nodes, no mets but inside the liver, he thinks my immune system is keeping CC at bay elsewhere in my body and that a transplant would result in CC metastasizing elsewhere. The cells are in your blood. I was told (rather pie-in-the-sky) by Dr. Kato that if the liver went quiet and there was no sign of CC for one year, he would do a transplant. For me, I would at that time count my unbelievable blessings and turn down the transplant and take my chances with my own immune system intact, I think. Who knows. I do think we will see an increase in CC transplants because the protocols were set so strangely and almost capriciously (this opinion from my surgeons too). Why for ECC and not ICC? Also, in Italy, you are considered an organ donor unless you opt OUT. Here, you must opt IN. I wish we could change our laws! Then there would be plenty of livers, at least. But I ramble ….

Wait… Oriental cole slaw? Is it wrapped as an egg roll?? Lol

hey guys!

I hope and pray that yall get the phone consults!! We love Javle and I mentioned this site and he commented that it is a great resourse!! Keep trying your right, it can be slow…we do alot of hurry up and wait at MDA but its worth it! Good luck to yall!!

Thanks, Danna, for getting back to me on this. As mentioned, my oncologist does not think outside the box, and if his senior partners are of the old school thinking, he probably has to go along with it.

For now, I have applied for Melinda’s clinical trial and should that go through, transplant won’t be on the table for a while. But like every other patient on this board, all options are in consideration until proven otherwise.

Best wishes and thanks again, Renée