Topic: Xeloda alone

I'm new to the site and find it so interesting.  My dad was diagnosed Sept. 26, 2009.   His best option for treatment is 3 rounds of Xeloda.  He just finished the first week of the "on" portion.  He managed it fairly well.  He has not displayed any of the side effects we were told to watch for, and he had only one episode of nausea.  What we are noticing is extreme fatigue.  He did not have a great deal of energy to begin with, but now is exhausted.  His physical activity at this point is getting in and out of bed and what exercises the physical therapist does when he comes. 

A little background:  he is 78 years old, diagnosed with cc along with lymph, lung and bone cancer, and has several compression fractures in his back.  He has a history of quadruple bipass surgery and pulmonary fibrosis.  He is currently on oxygen 24 hours a day. 

My questions are these:  Has anyone else experienced extreme exhaustion when taking Xeloda?   What other experiences have others had?

Related to the oxygen he has a very dry mouth that is bothersome to him.  Any suggestions?

I've gained so much knowledge and reassurance reading these posts.  Thank you!

Re: Xeloda alone

Snowlady,

Welcome to the site. We are a great community and really do our best to support each other emotionally and through shared knowledge.

I was very tired on xeloda, but I think most of that was caused by the dehydration. As to the dry mouth, all I can think of is hard candy. I dont have experience with oxygen. I hope someone can offer a better suggestion soon.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Xeloda alone

Hi Snowlady my Name is Joey and my father who is 69yrs old just started Xeloda and he is going through exactly what your father is experiencing. Its heart breaking to see them like this. My father is also a diabetic and was diagnosed with cancer in the bile ducts of the liver. As of now he is very tired and extremely cold all the time. it's like a sauna in his house. Unfortunatly my mother cant or wont except my fathers condition. its been very hard on everyone. All I can say is watch and pray. God knows iI have become more religious during this whole ordeal. We are constatnly checking on this and other treatments. FYI, my father also experiences stomach pain and is on meds for that to. He cant seem to eat much and it has begun nto show. My prayers are with you and your family. Thank you for using this sight to. I can learn more about this cancer too.

Re: Xeloda alone

Just when we expected to start round 2 of the Xeloda, the doctor did not like the results of the liver function test.  Also, his bloodwork showed calcium was leaking into his blood.  He received IV medication to try to reverse that process.  It will be at least a week before we know if it worked.  Based on those two things, the doctor can not continue to chemotherapy. 

Dad is retaining a lot of fluid.  His ankles and stomach are swollen.  His lower legs are so tight they must be so uncomfortable for him.   It looks like the liver is not producing the proteins necessary to break down what little water and food Dad was taking in.  Due to that, the doctor recommended we just take Dad's lead and not push for fluids--which in turn can cause dehydration.  He is eating and drinking very little.  To compound matters his mouth and throat are red and sore, which of course makes swallowing difficult.   He did finish an entire Popscicle today which helped temporarily anyway. 

What has been so difficult is the rapid progression of this disease and its side effects.  It seems we can't catch our breath from one thing before another hits.   We were told that the only constant from this point forward would be change. Today was a little promising because Dad was less confused and could actually communicate.  You never know what tomorrow will bring.

Re: Xeloda alone

I am sorry the chemo has been interrupted and that he is experiencing these symptoms. I don't really have much advice but I am a librarian and I remember coming across a cookbook for those who have trouble swallowing, the title is:

The Dysphagia Cookbook by Elayne Achilles

A quick search turned up this one as well:

100 Questions & Answers About Cancer Symptoms and Cancer Treatment Side Effects by Joanne Kelvin and Leslie Tyson

Patty

6 (edited by saracita Mon, 30 Nov 2009 06:41:01)

Re: Xeloda alone

Hi Snowlady,

It sounds like your father may be experiencing thrush in the mouth which are painful sores can come when on chemo. There is a mouth wash that a doctor can prescribe that helps with this. There are also over the counter toothpastes and other mouthwashes that help with dry mouth and promote more saliva activity. I am sorry I don't remember the name of these products but be sure to ask your doctor because they helped my boyfriend a great deal. I think some of the dry mouth had to do with the pain meds my boyfriend was on, so we just had to manage the side effects as best as possible.

Thinking of you today,
Sarah

Re: Xeloda alone

Just an update about my father. He is in the hospital totally dehydrated waiting to get replenished with fluids so he can get another cat scan and other tests. He is off Xeloda and his sores are better but it is the worst I have ever seen him. He is not responsive as far as talking he would mumble but that is it. He is very sleepy. If anyone has experienced this before I would appreciate any help. At this point we are preparing for the worst

Re: Xeloda alone

Joey,
I am so sorry to hear about your father.  It is hard to see loved ones suffering and leaves the rest of us feeling helpless.    It's a strange state we walk around in.  You never want to give up hope, while at the same time must face reality.   My thoughts are with you.

Re: Xeloda alone

Joey.....I don't have any answers but I want to you know that I am thinking of you.  I am hoping and wishing for your Dad to feel much better once hydrated.
Best wishes,
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: Xeloda alone

Joey,
I got very dehydrated from gastric upset while I was on Xeloda and ended up in the hospital 2 or 3 times from it. I too got weak and maybe not confused, but definately foggy and tired. The doctors adjusted my salts and pumped me full of fluids. It took a week once for things to get better. Hope it is the same, if not quicker for your dad.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Xeloda alone

Dear Snowlady & Joey - I'm sorry to be welcoming you both so late, but WELCOME anyway!!

I'm so sorry to hear all the stuff your fathers are going through - it's so very hard on the family, too, isn't it.  We're left feeling so helpless & lost sometimes.

My sister is on Gem/Cis, not Xeloda, so I can't comment there, but I wanted to add my welcome to those of the others.

Julia

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson

Re: Xeloda alone

Hi snowlady.  I'm in Buffalo so you might call me blizzardlady...My mom has stage iv biliary cancer.  Doc hasn't been able to say whether bile duct or gallbladder, but it's definitely in the gallbladder and portacaval area.  She is now on xeloda after gem/cisplatin worked a bit, then failed.  She's had her first 14 day round and feels better than she has since month before initial diagnosis (august 2009).  She had one bout of diarhea, which was after she took curcumin so can't say whether it was xeloda, curcumin or both.  She had numbness in 2 fingers for 1 day.  Her energy level is up.  She had far more fatigue with infusions.  We start second round on Monday, so I will let you know how it goes.  I hope your dad is starting to feel better.  Can you (or anyone else) tell me how you feel or what you know about using xeloda alone or as second line treatment?  Thanks so much and good luck and God bless. k

Re: Xeloda alone

I just started my very first round of Xeloda today. I know it is very early, but I have just experienced some abdominal discomfort. I was pretty shocked that some of the symptoms are starting to show so quickly.

Snowlady - I will post here again if I experience any other side effects.

Thank you,
Mel

Don't let cancer ruin your day!

Re: Xeloda alone

Hi....I just wanted to chime in with something you may already know but, just in case that you don't, the search function will lead you to many previous postings regarding the effects and responses to Xeloda.  It is time consuming to read up on but so very informative and helpful.
Mel, it is always great to hear from you.  I wish for the discomfort to stay at a minimum. 
Best wishes to both you, and lovemymom.
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: Xeloda alone

Thank you Marion. I know it has been awhile. Sometimes I try to give myself a break from reading or researching about this awful cancer. I guess I need to "forget" from time to time.


Day 3 of xeloda, and still only abdominal aches. I have been good about putting bag's balm on my hands and feet twice a day-hopefully I won't get the hand-foot disease.

All the best,
Mel

Don't let cancer ruin your day!

Re: Xeloda alone

Mel....I am glad that you allow yourself some time out.  The balm seems to keep the Peripheral Neuropathy at bay and everything appears to be working well.  Thanks for the good news. 
Enjoy and best wishes,
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: Xeloda alone

Hi Snowlady,

I have been over one week on xeloda alone, and the abdominal pain has stopped. No side effects to report.

Thanks,
Mel

Don't let cancer ruin your day!