September 8, 2013 at 4:05 pm #74879reginaMember
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!September 8, 2013 at 4:03 pm #74878reginaMember
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!September 4, 2013 at 2:29 am #74877pattimeltParticipant
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.
PattimeltSeptember 2, 2013 at 2:42 am #74876pcl1029Member
Anti PD-1 or PDL-1 antibody are also belonging to immunological Tx.
Keep an eye on the similar one too like anti-CTLA-1.
Thanks for your compliment .
God bless.September 2, 2013 at 2:30 am #74875holly22aMember
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.
HollySeptember 2, 2013 at 2:13 am #74874pcl1029Member
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.September 2, 2013 at 2:03 am #74873holly22aMember
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 ….September 1, 2013 at 6:08 am #74872lainyParticipant
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.September 1, 2013 at 5:27 am #74871kris00jParticipant
Wait… Oriental cole slaw? Is it wrapped as an egg roll?? LolSeptember 1, 2013 at 4:30 am #74870lainyParticipant
Heather, WOW! What an honor to have that validation from Dr.Javle!!! Thanks for letting us know that. Well, think I played enough solitaire on here tonight, time to go to sleep. My daughter decided to make dinner Labor Day if I make an Oriental Cole Slaw she loves. Heck yes! Night!September 1, 2013 at 4:21 am #74869heatherMember
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!!August 30, 2013 at 2:56 am #74868thebompie4Member
my husband is still working on a phone consult with MDA and a dr.
there….it seems like nothing is super fast in the world of doctors~
Thanks for ck’ing …will for sure update when we get to that point!
DorienAugust 30, 2013 at 12:57 am #74867rvbMember
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, RenéeAugust 30, 2013 at 12:50 am #74866rvbMember
Hi Kris. Yeah, I know, what a cold fish he was in the beginning. He is starting to warm up a bit, mostly because I keep him on his toes. But as I have mentioned before on other posts, there are only 3 CCA patients in this rather large oncology practice, so I don’t think the focus is too sharp when it come to CCA.
One issue is the attitude (I believe) on the part of the physicians: this is business, nothing personal. And when you’ve worked in medicine for over 30 years, you see the signs. Another issue is that my oncologist is the youngest and lowest member of the group; from what I hear from other patients with other doctors, I believe he is following the edicts from above.
I did not take his prognosis to heart, but it did get my butt in gear to tidy up some very loose ends. Now we are in a better place for when the inevitable happens…many, many years from now
See you next week!!! RenéeAugust 28, 2013 at 2:44 am #74865danna0325Participant
Dr. Javle told me a lot of Drs frown on transplants because when they first started doing them back in the 90 s the outcome was very poor. He said back then they were just doing them for anyone with this and now they know that it isn’t the best solution in all cases. Now that they look at the individual and what to test for the outcome is better.
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