Topic: Gemzar/Xeloda

I have been on gem/cis off and on for about a year and a half and have recently had some neuropathy in my feet and hearing problems so I asked to try something else. It's an emotional decision as the gem/cis has been keeping the cancer stable but I think my body has had enough Cisplatin. I start on Gemzar/Xeloda tomorrow 2 weeks on-1 week off. I took Xeloda for 6 weeks when I had radiation and did not have any problems so I am hoping that holds true this time. By reading the posts I know many of you have been on this combination, so if you have any words of wisdom or tips I would love to hear from you!

Suzy

Re: Gemzar/Xeloda

Suzy no words of sage advise just happy that you are able to try something else. Wishing you the best tomorrow and hope the new cocktail stomps that CC and without side effects!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Gemzar/Xeloda

Suzy,

I was on Gem/Cis and handled it pretty well other than it destroyed my blood counts.  I only had 6 cycles, so I'm sure the effect is cumulative.  I had radiation with Xeloda and had terrible acid reflux/vomiting, but I think it was from the radiation.  I've never been on Gemzar combined with Xeloda, but from what I understand those are both milder than Cisplatin.  But everyone is different.  I know hand/foot syndrome can be common with Xeloda, especially the higher doses.
I'm glad to hear you've done so well on chemo.

Take care and keep us posted!

Susie

Re: Gemzar/Xeloda

Hi Suzy,

My daughter, Lauren has been on Gemzar/Xeloda before. Xeloda was fairly tough for her to handle. Stomach upsets and really hard on her feet. I think everyone reacts differently to each chemo. She also was on Gem/Cis at the beginning of her 17 months on chemo along with 5-FU and handled that very well. If you find Xeloda to be difficult to handle, ask if you can switch to 5-FU. It is very similar, but is administered through a pump over 48 hours. Lauren tolerates 5-FU much easier than Xeloda. One tip with the Xeloda is to really put lots of lotion on your feet. Towards the end of each cycle Lauren had, her feet would be so red and peely and lotion helped a lot. I wish you all the best with your new chemo.

Hugs,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Gemzar/Xeloda

Thanks Lainy, Susie and Pam. The one hour infusion of Gemzar was a piece of cake compared to the all day long gem/cis infusion. Already loving that difference!

Pam, I had seen your post about Lindi Skin and ordered the balm and plan to use it diligently.  I hope Lauren is having a good week.

Suzy

Re: Gemzar/Xeloda

Yea! Suzy loves her chemo. Glad to hear it went so well and we don't want it any other way! And now you will get Balmy with Pammy!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Gemzar/Xeloda

Hi Suzy,

I am so glad you ordered the Lindi Skin product. It feels better than any other lotion. I know you will love it!! Isn't it great not to have to sit there all day at chemo getting Cisplatin!!! Gemzar is a piece of cake without it. Lauren is doing better. She has lost 19 pounds of fluid in the last week!!

Lainy- You crack me up!!!

Take care, ladies!!

Hugs,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

8 (edited by Lainy Wed, 24 Apr 2013 18:43:46)

Re: Gemzar/Xeloda

Pam, what great news about Lauren, the Dam has broken! I bet she feels so much better now. I think she deserves a big YIPEE! Back to wedding dress shopping. We should get her on Say Yes to the Dress or Four Weddings!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Gemzar/Xeloda

Suzy,
I don't know how your insurance is, but you can contact Genentech and they might reimburse you for the Xeloda depending on how much it costs. My copay was something like $350 and my adjusted copay was around $80 if I remember right... The brain is one of the first things to go..... And mine went for a walk when chemo started and hadn't come back yet!
My main side effects were the hand and foot syndrome. Just keep the hands and feet lotioned. I found socks that keep the lotion so I used them.
Good luck with the new treatment!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Gemzar/Xeloda

Kris,

Fortunately I have great insurance at work- Blue Cross PPO and my co-pay was only $40 but that is good to know. How long were you on Xeloda before you started having hand and foot syndrome?

Suzy

Re: Gemzar/Xeloda

I was on it for 2 months. The hand and foot syndrome wasn't bad until the last dose. Even then it wasn't too bad. I stopped it because it didn't work on one of the mutations of cc in my body. My feet started peeling because I got lazy about lotioning them after I quit taking the Xeloda. I kept it up for about a month then started slacking. Then they peeled. It wouldn't have been that bad but it was summer time and my feet showed!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Gemzar/Xeloda

My husband was on Xeloda last year and it was at least two months before he had any problems with hand and foot syndrome.  Even then it was fairly mild until he spent a couple of hours doing yard work.  Apparently he put a lot of pressure on his toes when he was kneeling in the dirt and ended up losing some toenails as a result.  Otherwise, it wasn't too bad and lots of lotion definitely helped.

Re: Gemzar/Xeloda

That's great news about Lauren losing all of that fluid Pam, I bet that she feels much better with that gone!!

Hugs to you and Lauren,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Gemzar/Xeloda

Lainy,

Lauren already found her dress, ordered it, and picked it up already! It is beautiful. They are having an old school Italian wedding.

Thanks, Gavin. Every day she gets up and weighs herself and says, Lost 3 more pounds!! I think she has now lost 26 pounds of fluid!! She is still really tired, worn out, sore, but feels so much better with all that water weight gone.

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Gemzar/Xeloda

Ohhh, Pam, An old Italian wedding, so romantic, I LOVE it. I could give you some words to use on the invite...oh wait, you won't want the words I know! Well, we could use food from Teddy's Sicilian restaurant. Naw, by the time it gets here they will have been married a long, long time. I know something I can send....Teddy's Sister, Maria. I really do love her, she has called EVERY day since he passed. Well Maria is on of those wonderful Sicilians one hires to cry at weddings, happy crying! Just let me know if yu need my help!!!   LOL

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Gemzar/Xeloda

ha, ha....there is not much that Lainy does not offer; her home, her food, and now her sister in-law to cry at weddings. 
You are hilarious, Lainy.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Gemzar/Xeloda

You got that right, Marion.  Lainy, you are too funny!!

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Gemzar/Xeloda

Dear SW55, I just wanted to try to help with side affects. My husband is on GTX, 2 weeks on and 1 week off. Regarding the skin issue with his feet. I started using utterly smooth (CVS) better than any other cream we tried. Start before it starts happening. This is the first treatment that his hair fell out but he was bald to start,just looks more handsome!! He has been feeling pretty good since the dr added 3-4 days of steroids after treatment,  not nauseous but gets hiccups for on and off for 2 days and a lot of burping going on. But we will deal with that as long as the drugs are working. Good luck.