August 1, 2016 at 11:28 pm #92838marionsModerator
dmr……..what is the time plan? What is the reason for delay for next step?
MarionAugust 1, 2016 at 12:52 pm #92837dmr1965Member
Thanks. Does make me feel better to read your kind words. Marians, I did have the genetic testing done. I was negative for all they were looking for. But I think Keytruda is what they’re aiming to get me on. They’re going for “Compassionate Use” If there’s no study ready when I need it.August 1, 2016 at 10:00 am #92836middlesister1Moderator
There is no limit on number of negative (or positive) posts allowable
I’m the type of person who has always second guessed many life choices, but since going through this with Mom, and lung cancer with Dad, I’ve realized that it could really threaten my sanity if I tried to second guess some of our choices.
From reading the many stories of our members, everyone is truly different and can make similar choices with vastly different outcomes. Best we can do is gather all information possible, and try to make informed decisions.
CatherineAugust 1, 2016 at 4:39 am #92835marionsModerator
dmr…….please don’t beat yourself up. The reality is, we don’t know the outcome of what could have or should have been done. Try to stay in the presence. This cancer likes to travel to the peritoneum (membrane that forms the lining of the abdominal cavity.) Nothing new here, is it preventable? We don’t know. Remember, not everyone responds to the same treatment and no one knows why that is happening.
Has your tumor tissue been tested for molecular alterations? If not so, then you would want to discuss with your physician. Perhaps previous surgery attempts retrieved tumor tissue, which could be sent to a lab for testing. I think you mentioned Klatskin, an extrahepatic tumor, hence you don’t carry the IDH-1 alteration. Please speak with your physician. Liquid biopsy results have been accepted for the NCI MATCH trial, hence this could provide another option, as molecular testing has become standard for our cancer.
Immunotherapy drugs such as Keytruda or Opdivo can be prescribed off label.
You may qualify (I think you will) for the expanded access program for either of the drugs:
You have come a long way, dear dmr, don’t give up.
MarionAugust 1, 2016 at 12:04 am #12662dmr1965Member
I get sad sometimes wondering what I could have done differently. I like my team here, but what if I’d have got to Memorial Sloan Kettering when I was in NY? Would they have waited so long? Could they have done surgery when my team would not? (After my 1st attempt at Albany). But I was directed to a liver transplant facility by CTCA, so didn’t go to MSK.
My doctor is still big on getting me on immunotherapy. I am just plagued by these thoughts as I’m in a much weakened state after all the chemo and radiation, and now my cancer spread to my abdomen.
I lost so much weight. I see how these diseases get to you. I barely have any energy.
Ok. That’s my negative post for the month.
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