February 9, 2016 at 4:22 am #86495mbachiniModerator
Congrats on being NED! That is fantastic news. Love your winning attitude to never give up! Hugs and prayers for continued NED forever!
MelindaFebruary 7, 2016 at 6:06 pm #86494
Been so long since I posted this introduction, thought I should update. I’m still doing great, going for my 15 month scan next month and I am NED. A few digestive issues and tiredness but I am not complaining. This is an ugly cancer though, in the time since diagnosis I have lost many cc friends and I have shed many tears. But God willing I am still fighting and won’t give up.January 27, 2015 at 6:02 am #86487marionsModerator
Helen…thanks for joining us and a big thank you to Margaret for leading your our way. First and foremost, congratulations on a successful surgery. Stage II disease is about as favorable as can be. Add to it the negative margins and I assume a good recovery all leads me to believe that things have been lining up for you well. I understand your reluctance of now following up with adjuvant therapy with one of the most prescribed chemotherapy drugs for this cancer. In fact, our search function (top bracket) will reveal hundreds of postings regarding this oral drug. Know that the possible side effects can be treated and there always is a chance that you won’t be bothered with much at all. As the others have mentioned, you have the right to stop treatments at any time.
I wish you luck with your decision and please continue to stay with us. We are in this together.
MarionJanuary 27, 2015 at 2:58 am #86486kvollandParticipant
Welcome to the family here. It’s one you don’t really want to belong to but will glad you are. Sounds like you are already a couple plus to the positive with being diagnosed at stage 2 and being able to have surgery so I say WooHoo!
My husband was diagnosed stage 3b and was able to have a resection. He had negative margins on the second section but had a positive lymph node and some extension into nerves and lymph system. He opted to have 6 months of chemo which was 12 doses of Gemcitabine and Oxaliplatin then followed it with 25 doses radiation with continuous 5FU infusion. He wanted to give it every chance to not come back.
And has been said to chemo or not is a personal decision but remember if you start it you can always stop it if the side effects are worse than expected.I don’t have any experience with Xeloda but there are plenty that have.
Good luck and keep us posted.
KrisVJanuary 27, 2015 at 2:45 am #86485okansasParticipant
I’m sorry you are going through this and that you even have to deal with this.
What a relief to see that you’ve made it over here and posted to the forum — so many wonderful people here with information to share, and support and caring to give.
Stay strong and absorb all the helpful information here that you can. ~ This is a very caring family.
MargaretJanuary 26, 2015 at 9:05 pm #86491lainyParticipant
Dear Helen, to chemo or not is always one of the biggest questions we get and unfortunately it is such a personal decision. Because you are Stage II but the fact they did see micro cells, if it was me, guess I would do it. You can always go off the chemo and we have a lot of patients on or have taken Xeolda who may be able to give you some advise but the bottom line is it is your decision. You don’t want to look back and feel, I should of, could of. On the other hand I know Chemo can be harsh. I think I would ask my ONC what the chances of a return of Cc would be without chemo vs chances of return with chemo. Best of luck on your decision but remember you are already ahead of the game having had surgery and at the Stage you are. Hope I didn’t confuse you more but I tried to point out reasons to have or not have it.January 26, 2015 at 8:55 pm #86490
Thank you everyone for the warm wishes. I am very happy to have been directed here and connect with you all. I still feel it’s a bad dream. I’m not sure about taking chemo, it was a decision I struggled with big time. It has bad reviews and so many say it’s what killed them. But the doc says it’s okay. What do you believe.January 26, 2015 at 8:07 pm #86489darlaParticipant
Glad you found us and thank you to Margaret for directing you here. You will find this is the best place to be for information, help and support when dealing with the disease. Glad to have you aboard. Good to hear that things have gone well for you and hope that continues. Let us know how you are doing.
DarlaJanuary 26, 2015 at 8:00 pm #86488lainyParticipant
Hello Helen and welcome to the best place to be for CC support. CONGRATULATIONS on your surgery, as you know it is our favorite word. That and the word stable. It is perfectly normal to feel nervous about the unknown but once you start treatment honestly, your fright will turn to fight. Good to hear you feel so good and you also have a winning attitude. Please keep us updated on your success and you have now increased your family by hundreds!!!January 26, 2015 at 7:22 pm #86493gavinModerator
Welcome to the site. Sorry that you had to find us all here and sorry to hear what you are going through, but glad that you’ve joined us here as you are so in the best place for support and help and will get a load of each from all of us.
Thanks for sharing what is going on with you and you are so in good hands at the Princess Margaret in Toronto. Quite a few of our members were diagnosed and treated there and hopefully they will be along soon to connect with you. Real glad that Margret got in touch with you, thank you Margaret!
Glad to hear that you were able to have the surgery and my fingers are crossed for the chemo to do as it should. I hope it goes well and loads of positive thoughts are coming your way. Please keep coming back here as you are around people who so know how you feel and what you are going through. We are all here for you and we care.
My best wishes to you,
GavinJanuary 26, 2015 at 6:34 pm #86492mattreidyParticipant
Welcome Helen. I’m sorry that you’re going through this but glad that you found this site and forum. It’s a great source of information and support. I too had a resection for perihilar CC. That was in January 2014. My margins were clear and there was no metastasis so I personally chose not to pursue adjuvant chemo.
Feel free to reach out with any questions on recovery etc. Wishing you a speedy recovery.
-MattJanuary 26, 2015 at 6:11 pm #10907
Hello my name is Helen I am 55 yrs old and I live in Canada but not a lot of information is available for me to know what I am dealing with. So one of your family contacted me through Cancerconnection.ca and told me about this organization, so here I am.
I am a patient at the Princess Margaret Hospital in Toronto, Ontario and was diagnosed with CC in October 2014 and had resection surgery in December. After my surgery I was told it is stage 2 and that I needed to see an oncologist as they found microscopic cells in the small vessels of the piece removed but that it was not found at the edge of the resection. So my oncologist has now suggested we do 6 cycles of chemo, xeloda, as preventive treatment. They can not be sure that it did not spread further, so they are also now watching my lymp nodes.
So I start my pills on January 28 and I’m doing 2 weeks on and 1 week off. I’m nervous as hell but feel great.
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