Mom diagnosed at 53.
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Hi there Nancy. Welcome to the site here. I am a fairly new newcomer to the site, but have received much support and a LOT of information to work on.
I was also on Gemzar/Cisplatin for 3 months and tolerated it VERY well. The nurses at the infusion center where I went were wonderful and made sure that you got your anti-nausea meds first and if you were experiencing ANY nausea, they suggested more meds. I took Aloxi during infusion, as well as Emend, then for 3 days after took Emend, Decadron and Zofran. Those usually worked and I was fine for the rest of the week. If that didn’t work, I was given Compazine just in case.
I am now taking Xeloda chemo pills and have not had to taken any anti-nausea meds.
Most importantly, don’t worry about any of the side effects, but watch your symptoms and take care of yourself, telling your doctor anything that changes. They are there for you and no reason why you need to suffer even further. The biggest part is watching your white blood count and the fatigue that you may get.
Post any side-effects you have here (in the side-effects section), and you can get suggestions for help.
Good luck,
Linda Z.
Dear Ailsa & Nancy – Welcome!! It’s nice to meet you, too, Susan. I’m so glad you’ve all joined this wonderful family although I’m so sad that any of us need to be here.
My sister is on Gem/Cis & is tolerating it well. Like Susan, she gets very fatigued (& the sweats drive her nuts, sometimes) but she is coping very well & I hope you do, too, Nancy.
My thoughts are with you all. Please keep coming back & talking to us – you’ll get so much wonderful support & information here.
Julia
Dearest Nancy…..I so much understand your apprehension about tomorrow. Many others on this board have had similar fears and I am hoping for some sharing of their thoughts coming our way. The Gem/Cis combo appears the standard of treatment and it is being used for the majority of CC patients. (That is what I believe.) You are not alone. I may be wrong however, I had always thought that Irenotecan was pretty harsh and I am wondering whether the Cisplatin may be not any less tolerable then what you have already experienced. The upside to this though, is that you may stop treatments at any time. And that is a decision only you can make. Whichever way you choose be assured for tons of support coming your way.
I will be thinking of you, tomorrow and I am sending all my love your way,
MarionNancy, please don’t worry about the chemo. I’m starting my fourth cycle of Gemcitabine and Cisplatin on Thursday (once a week for two weeks and then a week off), and there’s nothing to be scared about. Be sure you know what the side effects are and how to deal with them (including when you should call your doctor). You should be prescribed an anti-nausea drug (I take Zofran), and be sure you can take one before the chemo drugs are transfused.
The biggest side-effect I’ve experienced is fatigue, and that builds after the second treatment and eases off during the third week of the cycle. It’s more of a nuisance than anything. I’ve had a couple of abdominal infections that have been much more troublesome.
By the time my cancer was discovered, palliative chemo was the only recourse
Dear Marion,
Yes I will be getting more chemo tomorrow with Gemzar and now instead of Irenotecan Cisplatin will be added. I hear Cisplatin is more volatile though. I am just scared to death when I get chemo. I’m scared to take chem and scared that if I don’t that I may miss something that may work. Even though my oncologist said chemo won’t cure and that there won’t be any remission. I’m afraid of giving of hope I feel if I do I might as well start digging my grave. No medical personnel will give me any hope. I,m so scared about tomorrow.Sincerely,
Nancy
P.S
I’m not computer savvy and am not sure how to work these blogs and suggestions that you have would also be appreciated
Hi Nancy,
Welcome to the site but I am sorry that you had to find us. I can’t offer any advice regarding specific treatment centres in the USA as I am in Scotland, but I wanted to join with Lainy and Marion in welcoming you here. I wish there was something more that I could say to help.
My best wishes to you,
Gavin
Hello Nancy. I would also like to welcome you to our site. The chemotherapy recommended, does it consist of Gemzar and Cisplatin?
Best wishes,
MarionHello Nancy and Welcome to our wonderful Family! While it may be true that one Cancer Center can pretty do the same as another, I have always felt that a new outlook is sometimes very valuable as another doctor may detect something that someone else did not or have other game plans. You do not have to go running all over if you get copies of your tests and DX and Fax them to MD Anderson or Mayo Clinic in Rochester MN or almost anywhere and you can get a consultation over the phone. Also may I suggest you re post your self under Introductions so that this does not get lost and I know you will get more answers. Please don’t loose hope as we have some Miracle outcomes on our site as one never really knows. Please keep us posted.
hello, I,m a newcomer to the sight but not a newcomer to CC. I was diagnosed in July 2008. Had a liver resection with a gallbladder removal, chemo and radiation. After the surgery I went from being clear to having a few tumors in my liver and some lymph nodes to having more tumors. I just had to local opinions in the PITTSBURGH, PA area for both to say I’m pretty much screwed. They just want to change one of my chemo drugs. The reading I did says it’s potent and doesn’t do much for CC but that’s supposedly the only protocol for CC. They told me I might want to try Sloan Kettering in NYC or MD Anderson in Texas. Since they are research facilities they may know more even though all the doctors said facilities don’t hoard information whatever is out there is for all to know. I f this is so why do I need to travel to find out what any doctor should know about CC. Has any one had any better luck at any of the Nationally known cancer centers? If so I would like to hear your story. I’m starting to loose hope since especially no one in the medical filed can give me any. Sincerely,
Nancy/Pittsburgh, PA
Hello Alisa….I would like to echo everyone else in welcoming you. As Ron has mentioned, we do not have any doctors on this site. However, the knowledge and information shared on this board proves to be invaluable when dealing with this disease. I also would like to point out to you the “Nutrition” section. Additionally, many great postings are hidden therefore; you might want to consider using the “Search” function in order to retrieve certain valuable threads pertaining to your questions. I am glad that you have found us.
Best wishes coming your way,
Marionhi alisa,
i would like to join the other members and welcoming you to our family, they are a great bunch of people who will try and help as much as we can….. who better to answer your questions, other than the doctors about this …… good luck and best wishes and prayers for mom and you…..lucille and ron
That is good news about your Mom and once the plan is in place there is a certain relief because, as you said, you don’t feel so helpless. One of the best books to read is the Anti Cancer Book. Really has some good and understandable reading about diet and nutrition. In fact you can pull it up in our Search engine at the top of the page and will see that quite a few of our members have read it. Good luck now and keep moving forward.
Thank you all for the warm welcome.
My mom’s biopsy confirmed cancer yesterday, which was really some what of a relief as we already knew that she had it, but were unable to move forward with treatment until we had the confirmation. So now she can move forward with the chemo and radiation. Also, her biliruben levels needed to come down, and they did, so that is good news.
I am trying to think of ways to help her, and right now I am focusing on her nuturion and trying to recruit my friends to help me with this. At least it is a positive thing that we can do for her so we don’t have to feel so helpless.
Hi Alisa:
Welcome to our family! You will find lots of love and support from this website. I too did not want to join, but because of my husband Tom and his journey with CC, I’m very glad I did. Folks on this site are wonderful and also give us caretakers the extra support when we need it most.
I will pray for your Mom and hope you get the answers you seek soon.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret (My Husband and Cholangiocarcinoma)
Hi Alisa and Welcome to our Wonderful Family! Sorry to hear about your mom but great things are happening every day. Sometimes I think we should be called the “Miracle Network”. I am so glad to hear you are reading up as that is one of the best things you could do. When the game plan is put in to action, believe me the fright stops and the fight starts. Please keep us posted on how your mom is progressing. Glad to have you both here, sorry you had to make the visit.
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