cdaley2

cdaley2's Recent CancerCompass Activity

• cdaley2 has replied to a post on the message board

  Philip, Dr. O'Reilly  will request the CPI_613 on compassionate basis. However, the form says you must be folfirinox naive, which doesnt seem very compassionate to me!. My scan after 8 FOLFORINOX sessions shows mostly stability but slight growth in a couple. So while the Folfirnox is doing something, it's not gangbusters. If I can't get the 613, will go to Gem/Abrax, to which she agreed to at Cisplatin and Vitam...

  February 14, 2018 view post

• cdaley2 has replied to a post on the message board

  Everyone,  On the subject of Nanoknife, (still on my quest for the right lung mets treatment), I "e-spoke" with Dr. Robert Donoway, who will do IRE on selected Stage IV patients unlike Dr. Martin, for example. My question was whether or not there was a role for nano-knife with lung mets. His response was that w/r/t lungs, this is one of the few circumstances where IRE is not appropriate. The reason is that beca...

  January 11, 2018 view post

• cdaley2 has replied to a post on the message board

  I recall hearing that Dr. Leen was a bit more open than the Martin et. al.  Best to start a new thread to ask the Brits on the board.  Chris

  January 08, 2018 view post

• cdaley2 has replied to a post on the message board

  danny4mami, this is a series of great questions, and the answers are complicated. I am by no means an expert but I have done a lot of work on my own behalf and perhaps I can shed a little light. By way of background, I had distal surgery, but several months later had a recurrence to my lungs, hence stage 2a to 4, and I have been researching ways to treat the mets rather than just straight chemo, or watch and wait, wh...

  January 07, 2018 view post

• cdaley2 has replied to a post on the message board

  thank you PhilipJax and Merry Christmas. I am sure I speak for all when I say we all appreciate your research and sharing of ways that make our lives so much better! Chris

  December 15, 2017 view post

• cdaley2 has replied to a post on the message board

  Helen, I had surgery, but shortly thereafter it spread to my lungs. Since lungs are the first and only place of mets, I guess I'm wondering about what you are being told. Often, lung mets are pretty indolent and I am told it will take "years" to kill me, and some people don't even need to start chemo for 2+ years. While my onco suggested a watch a wait approach, I did some homework and am currently on FOLFIRINOX. If...

  December 05, 2017 view post

• cdaley2 has replied to a post on the message board

  Philip Jax, thank you so much for posting this, it is a hot topic right now, which I found out about in my quest to find the right treatment for my lung mets, and also suspected from what I have observed anecdotally. I unfortunately missed the window, but apparently late last year Sloan has moved toward the chemo first regimen, at least in some patients. If only! Also, in my travels I consulted with Dr. Joe Herman (a...

  November 16, 2017 view post

• cdaley2 has replied to a post on the message board

  GinaGB, I wrote a private message back to you, did you get? Anyway, just let me know the next time you see her - I am there everyother Tuesday, so even if it's the wrong Tuesday I am only one stop away. If you need to contact her, best is to call the office and ask for Renee, she's the best. Also since you travel, if you need a place to stay in NY I usually have a spare BR in BKLN. I can't believe they , are encourag...

  November 04, 2017 view post

• cdaley2 has replied to a post on the message board

  GinaGB, I do not think MSK does nano. Re Dr. Martin - if this involves mets you have to figure out around his gestapo assistant. I sent all my stuff to her - she first called to complain that she didnt like how my download was organized. Then in talking through it with her she dismissed me without asking Dr. Martin because he supposedly doesn't do mets. I have since learned that I would be better off with a lung spe...

  November 03, 2017 view post

• cdaley2 has replied to a post on the message board

  I love Dr. Herman! I stalked him down - a v. good friend of mine was friends with somebody, etc. - otherwise it's very hard to speak to anyone at MDA. He was the one person that recommended a cohesive treatment plan for my lung mets - FOLFIRINOX for a couple of months, SBRT or even regular ablation (not sure what that is, maybe RFA?) of remaining tumors, the 2 more months FOLFIRINOX. I just started the chemo, we'll s...

  November 03, 2017 view post