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VEry interesting--I agree with what your daughter discovered on the nutritional front. (My husband has ICC and I've been grappling with the nutritional end of things on his behalf.) Do you/your daughter have any thoughts about coffee? My husband drinks a pot per day, and I think it's just acidifying his system. I'm wondering if you have any input on that. (Is green tea better?)
my husband has had gout for years, and it was especially bad in the year he was diagnosed...now, after his surgery and treatment, it seems to be at bay. so maybe you're onto something!!
Check out Laura York's blog...http://thecancerassassin.blogspot.com/
She was dx with stage 4 in 2010 and is a real fighter --her story has really encouraged me (my husband dx w stage 4 last april)
Dr Javle is tops, but you may also want to run your situation by Dr. Kato at NY Presbyterian Hospital (622 W 168th St # 105 New York, NY 10032 (212) 305-5101
He specializes in the most difficult cases!
My prayers go out to you and everyone else on this board. (My husband was dx last April, and though he was able to have surgery the outcome was not too good.)
Thanks so much allowing us to go through all of this with you. Your post brought me to tears. You and Lauren are my heroes.
love and prayers,
So sorry you've had to join this family off patients/caregivers dealing with CC. (my husband was dx april 9 2012 and had a resection, and is doing well at the moment, but i'm always aware of the possibility that the CC could return, especially since it metastasized to a distant lymph node and there is/was perineural invasion.)
Anyway--even though you live on the west coast, you may want to run your situation by Dr. Tomoaki Kato ((212) 305-5101) since he performs surgeries that no others would dare. Another great doc, at Sloan, is Dr. Fong. Of the two, I'd say that Kato is more "outside the box" and you may just want to see what he has to say about your wife's case.
Glad we can all be here for you,
Audrey (aka betzeegirl)
that's beautiful, kris! and BTW Lainy, I'm sort of like your Robin...I still consider myself Jewish but also believe in Jesus. After all, Jesus and all the first "christians" were Jews and even the first pope (Peter) was a Jews!!!!!!
Have you heard of Dr Kato at Ny Presbyterian? He does surgeries that no one else would attempt. I'd contact him for another opinion. Holly22a on this board is seeing him and is very impressed from what I gather. There is also a great onc at NYP named Abby Siegel, who we saw for a second opinion.
You are in my prayers...my husband was dx a year ago, and Dr Fong at sloan operated on him. (margins weren't clean and he had nodal mets--BUT...he's doing great at the moment, so we're just enjoying each and every day!!)
Audrey aka betzeegirl
I googled Kato just now and here's his contact info:
Dr. Tomoaki Kato
622 W 168th St # 105 New York, NY 10032
hi! thanks for all this work!! i'd love to take a look, but i think you'll have to upload that file...it's pointing to your hard drive
mary-- my husband sees dr goodman and we like her. kris--have you ever thought about dr abby seigel as a second opinion? we LOVE her
hi gavin! i can't access this journal article (some i can, since i'm affiliated with an academic institution--my institution doesn't subscribe to this one.) can you tell me if PNI WITHOUT elevated pre-op CA19-9 is prognostically significant? thanks!
WOOHOO!! So glad to hear that news, holly!
This is really upsetting. Others will weigh in, but I'd suggest that you contact Dr. Yuman Fong of Sloan (he did my husband's surgery and does difficult surgeries) and Dr. Kato of Columbia Pres (he attempts surgeries no one else will do) just to make sure surgery isn't still a possibility. Let me know if you need more info. And I'm praying for your sister and her family.
God Bless and keep you.
that is beautiful!!!!!!! so happy for them!
that is a beautiful poem--thanks for sharing!
It should be noted that he wrote this in 1982 and lived until 2002 !
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,
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)
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)
i can relate to what you're going through: last may my 70-year old mom was DX w/endometrial cancer (found on a routine exam); 2 months later I nearly severed my right index finger in a freak kitchen accident and had to have nerve and tendon surgery (i'm a professional woodwind player!!!), and then a few months later my husband was DX w/cc. it was one huge whammy after the next. right now i'm just trying to live each day and not think about the future--"one day at a time," as they say. I do feel the hand of G-d upon me to comfort me and give me an eternal perspective, but it's still very very rough going. i'm glad we all have this virtual community. i read the posts every day!
audrey (aka betzeegirl)
Posts found: 1 to 25 of 49