betzeegirl
Forum Replies Created
-
Posts
-
my husband, who had an R0 resection for ICC with “close” margins and 1 positive (celiac) lymph node, just completed his adjuvent therapy–gem/xyloda for 4 months, then 5 1/2 weeks of mon-fri radiation. Dr Gassan Abou Alfa of Sloan is his oncologist, though we also consulted with Dr. Abby Siegel of Columbia Presbyterian. Their thinking was that the positive lymph node (even just one), made this the appropriate course of action. Thankfully, my husband tolerated the whole thing pretty well.
holly, how about running your situation by other surgeons? Dr. Fong at Sloan operates on difficult cases (he operated on my husband’s CC on May 1st of this year), and particularly Dr. Kato at Columbia Presbyterian takes cases that no one else will touch. I think it’s worth a try! Praying for you, and please keep us posted. Also, here’s a link to Laura York’s blog…it’s really inspiring as she was an inoperable case and is doing great: http://thecancerassassin.blogspot.com/
hi joteach, we’re disappointed with you but this CC can be a very rough ride. (my husband has it.) i got a lot of encouragement from laura york’s case–she had a grim dx (and surgery wasn’t an option) but is now doing GREAT. http://thecancerassassin.blogspot.com/
you’re in my prayers,
betzeegirlhi adam–
WOW. thanks for the detailed description of your history! Others can weigh in more authoritatively, but from what I’ve read, the fact that your margins are clean and you have no nodes is the best possible surgical outcome. yes, the recurrence stats aren’t great–but you’re not a statistic!!! my husband, after surgery, had “close margins” which essentially means they were positive, plus positive distant lymph notes…but we’re happy he was among the 10% that couldn have surgery, and we’re just praying for a miracle. he’s on gemzar and xyloda plus radiation.keep us posted!!!
betzeegirl (wife of CC patient)hi lauren…that’s EXACTLY what happens to my husband–days 1 and 2 he seems great, and then day 3 it’s like he’s been hit by a truck.
Also…we’ve had 8 hour waits at Sloan. it’s brutal, but it is a great place nonetheless. God bless you and your mom.
audrey (aka betzeegirl)jujubear–
fong did my husband’s surgery on may 1st. margins were “close” (not quite positive but also not definitively negative) and he had lymph node involvement. anyway, we definitely like fong. BUT as for oncologists, we loved Dr. abby seigel at columbia pres. her # is 212-305-9781. she works with dr kato who is another top top surgeon. all the best and God bless you!
audrey (aka betzeegirl)
hi melissa–i can really relate to what you’re going through w/your mom. how are things going? any improvement? i’m having the same struggle with my 55 year old husband. i think i care more about his health than he does. not a good place to be, i’m just praying for God’s wisdom!
Lisa, husband has ICC and we saw Dr Abby Seigel at Columbia Pres for a second opinion. We were VERY impressed with her. She’s a top specialist in CC and really caring too. Her office # is 212-305-9781 if you’re interested. I pray God’s strength for you.
AudreyHi Kim–
I highly recommend Sloan: Yuman Fong is my husband’s surgeon, and Ghassan Abou Alfa is his onc. Also, at Columbia Pres there is a very very well regarded surgeon named Dr Kato and a GREAT onc named Abby Seigel (we went to her for a second opinion and were really impressed.)
Audrey
Kris! that’s a good idea–have him to the bloodwork before the schlep! the only problem is that things are extra strict with this clinical trial…but we will ask!!!!
and to answer your question…NO! he drinks more than a pot of coffee a day and eats LOTS of sugar! and i have to force him to eat healthy!! (but now he’s allowing me to help him, so that’s great!)
