snezzie
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Kris–
You inspire me. Ever since I first came to this site, reading your posts helped me a great deal–made me smile or gave me valuable information or lifted me up a bit out of that deep, awful black hole
I am almost on the other side of the world from you and at times I think of you and wonder how you are and send you my hope.Lesley.
Mari — I have seen 6 Oncologists in the SF Bay Area and I must tell you that of those 6 doctors, Dr Alan Venook is the only one who does have experience and a detailed knowledge of CC.
I would recommend him with complete confidence.
There is also a Dr Andrew Ko @ UCSF, a colleague of Dr Venook that I have heard very good things about.
Even if you like the doctor that you have the appointment with, PLEASE do get a second and even a third opinion.
I have done quite a lot of research and knowing what I know now
if I had it to do over again–in all of California–I would have gone to UCSF. Definately.
Please keep us informed , Mari.Snezzie
That is the loveliest thing that I have ever read, Lainy.
In my mind’s eye, as I read it, I saw the two of you dancing around the sun..Darling Lainy–
You who have been our shining light, whose posts have guided us–so full of empathy, so lovely, filled with such kindness should never have had to witness, experience what you did.
I am speaking from experience when I advise that you must let go of the memory of it and turn away from it and focus upon remembering the loveliness of your relationship with the marvelous Teddy.
You have the support of all these people who care for you so greatly —please lean onus and we will hold you up help you to remember only the marvelous times with Teddy.
Julia—you and what you are doing is so very admirable and inspiring to me.
It must give you a very nice feeling inside to know that you are truly making a difference.Snezzie
Yes, this IS a great thread !!
I had my resection for left lobe intrahepatic CC done on Jan 19th as well, and I also am looking forward to my 1 year anniversary.
Best Wishes to all,
Snezzie
Marion,
It was Dr Venook who said that it was a” matter of the horse already leaving the barn…….”
His opinion is that there is no point in any Radiation treatment since it already went to the lymph node.
Both he and my Kaiser Oncologist say that I should stay on Gem/Xeloda
even tho they both say that I should have had Gem/Cis.instead.Dear Linda, I agree with both you and Isisman—-I have asked 2 Kaiser Oncologists for adjuvant Rad Tx and hey both refused me===saying “what are we supposed to radiate?”
Can anyone suggest to me what I should say/how should I insist upon having Rad Tx?I don’t wish to upset anyone, each of our cases appear to be different, yet somehow that very difference is what seems to link us together……
This is in reference to having a clear margin,yet local lymph node involvement. ie, Stage 3, LN 1.Post Resection.
I am on Gemzar/Xeloda. BUT, It seems that the “Gold Standard of Care” would be Gemzar/Cisplatin. This was told to me by Dr Cheryl Cho @ Stanford and Dr Alan Venook @ UCSF and 2 other very prominent MDs in the Oncology field.
Dr Venook said that in my case, due to the lymph node involvement, radiation would be a case of “the horse already left the barn”….as in no point to do radiation at this time.
I have just returned from Evanston, Illnois–I saw DR Keith Block and he has given me some hope. Please Google him. and also read Andy’s post under Alternative treatment.
Best wishes, SnezzieBill,
I, too have the same staging as you do. I had a resection 1/19/10.I have the same question as you. Please read the posts that people have sent me. It may give you a bit of info.
Many people have been very kind and have described their own situations post resection.
I am going to UCSF tomorrow to see Dr Alan Venook for the same question that you posted.I will let you know what he says.
My Kaiser ONC says Gemzar / Xeloda. A Stanford ONC said Gemzar/Cisplatin.
Neither one mentioned adjuvant Radiation.
It’s all so very confusing.
I won’t be able to post anything until Monday.
Snezzie.Kris, I just read your post to Jtoro—
I think that you are marvelous and I have read your posts to other people and also the “What I hate about CC/Pet peeves” and it’s you who has made me feel a bit better and given me help when I’ve been really low.
I admire you for your fortitude and strength of character. And for making me laugh at times.Jtoro, please know that you are not alone—and take to heart what Kris has writen–I certainly have. I have finally realized that whatever time I have–I cannot waste it by worrying and making myself ill/frozen with fear….instead of living each day with intention and focus on the lovely times and people in my life.
Snezzie
Dear Jtoro,
I am 52. My situation is different than yours, But I am on gemzar and xeloda-with very little problems as well.
I don’t really have much to say to you except that I have done an extreme amount of research and the most important thing that you must know is that absolutely nothing you have done has “caused” this to happen to you. NOTHING. Please believe me. Do what you need to do to understand that this is not your fault. Release the guilt, because the “blame” isn’t yours.
Please ‘join’ this group of marvelous people—-read their posts–they have an amazing amount of knowledge and advice/suggestions.
But the nicest thing is that they are so very caring of each other.Snezzie
Suzanne,
I don’t know don’t know if this info will help…..
Look up about The Block Center. This Dr Block was the first MD to use the Chemo pump.
He is in Evanston, Illinois. I am goIng to see him on July 9th.Snezzie
