Re: MD Anderson visit

Ha, Ha Kris. No it's quite delicious and you can make it the day before, then it's even better. It's made with ramen noodles and sliced cabbage.

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: MD Anderson visit

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 ....

28 (edited by PCL1029 Sun, 01 Sep 2013 20:15:04)

Re: MD Anderson visit

Hi, Holly,

I do agree with your assessment about liver transplant.
I think the next logical treatment ,if needed, at least for me , will be the immunotherapy and/or the chemoembolization, microwave ablation,
RFA, IRE, cryoablation and radioembolization if needed unless resection will be  an option.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: MD Anderson visit

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

30 (edited by PCL1029 Sun, 01 Sep 2013 22:03:40)

Re: MD Anderson visit

Hi,Holly,
Anti PD-1 or PDL-1 antibody are also belonging to immunological Tx.

http://www.nejm.org/doi/full/10.1056/NEJMoa1200690

http://cancerres.aacrjournals.org/conte … 1.abstract

Keep an eye on the similar one too like anti-CTLA-1.
Thanks for your compliment .
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: MD Anderson visit

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

Re: MD Anderson visit

My understanding about transplant, and this from my very well-informed docs at Columbia Presbyterian in NYC, is that when the immunosuppressant drugs are given to avoid organ rejection, all the micrometastases that have been kept in check by one's immune system suddenly flourish and one winds up with tumors throughout the body.  Also, we don't fit the criteria for a transplant organ -- one would have to get a live donor, which can be done.
If anyone has differing information, I would love to know.  I have intrahepatic cholangio that recurred three years after resection.  I've had six months of Gem/Ox and two of FOLFIRI, and now await clinical trial openings or better ideas.  We're not sure if spots in my lungs are mets, as they've been stable.

Best to you all!

Re: 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!