day 5 of Xeloda

Xeloda

I try to catch anyone that has questions about Xeloda because my husband did fine the first 10 days or so then got very sick with it. I read that Folic Acid in the diet or as a supplement increased the side effects of it. We cut out breads,cerials,pastas and anything else that was fortified with Folic Acid and he was a different person! I hope you don't have problems but if you do keep this in mind. I have shared with others having trouble and it helped them also. Stephanie

I asked Steves onc today if
I asked Steves onc today if he could switch from the pump to Xeloda. There has been some concern that a clot near his port is preventing the 5fu from emptying the pump within the time frame. Lately, his bottle is not yet empty come disconnection time. There is also concern that the clot is absorbing too much chemo. It seems to me that the oral form of the same medication would solve the problem. Not going to happen. Apparently, (We live in Ontario, Canada) Xeloda is considerably more expensive than the pump. OHIP will not cover it. Would have to ask our private insurance company to pay. Would like take a while to get approval. Steve is only scheduled for three more sessions, so she prefers to hold off for now. Plus she says that the side effects might be worse for him. He tolerates them pump well. It surprises me that the oral med is more expensive than the pump. To me, the pump looks like the more expensive route. Especially when you consider the cost of disconnection etc. The onc agreed. The only other solution (around this clot) is to connect the pump to a vein in his groin, instead of the vena
cava (port)!!!!!!! Steve was not jumping for joy over that suggestion. The onc advised against it due to his recent bleeding problems. Will continue on as usual. She suspects the chemo is being effective, as is.

I guess I got slightly off topic. Glad your tolerating the Xeloda well, Donna. I've only heard positive comments regarding this form of the drug.

Chelsea

Xeloda

Took xeloda for about six months last year and found it very tolerable. Was on avastin a lot of the time and found the concoction very tolerable. Some tiredness and mild nausea but worked full time and functioned reasonably. For me it was far easier than oxaliplatin and  very convenient being oral.

This isn't everyone's experience but I hope it goes well for you and you get the results you are looking for,

Steve

Minimal Side Effects

My mom is on her fifth round of xeloda (not taking with anything else).  Side effects kicked in after the third round, but they have been minimal--just sores on her hands.  These resolved with interruption (she is now two weeks on, two weeks off instead of two weeks on, one week off).  The issues with her hands have been so minor in comparison with the dramatic results she has been getting (seriously, nothing short of miraculous!).  I hope you have the same amazing results and ability to tolerate xeloda.

Re: the costs of xeloda, I'm surprised anyone is having trouble getting this covered in Canada.  We live in BC and the drug has been covered for my mom. 

I remember being disappointed when my mom was deemed too weak for IV chemo treatment, but in hindsight we are so lucky her oncologist insisted on xeloda given how well it has worked for her.

maglets said:

Donna

I have done full course of 5FU......had great difficulties....have done xeloda by itself and then a course of xeloda with oxalyplatin.

I found the xeloda the easiest to tolerate by far.  My side effects with xeloda were digestive....had gut pain....not just nausea.....lots of nibbling crackers.....I agree with you....sometimes the carbs would be hard to give up ....sometimes bread and crackers just feel like a sopper-upper ....

Vancouver I am in Ontario too and like Steve and Chelsea I had trouble getting the xeloda.....my onc had to do some mighty fancy footwork to get it covered.....to tell truth i cannot remember what she did.....but it was all under the table .

Stay well Donna and good luck with the xeloda......

mags

I was going to send you a pm,
I was going to send you a pm, Maggie. I remember reading that you had taken Xeloda and wondered if you'd had a hard time with regards to coverage. I got the impression from Steves oncologist that it would be possible to convince the insurance company that the oral medication was required but that it would be a big hastle. She also said that the doctors have been trying to convince the government that Xeloda can be more cost effective and more convenient for the patient. She said that they are beginning to understand and she can see Xeloda becoming much easier to get within the near future. The pump is a bit of a pain. Especially with the problems Steve has been having lately. He will go to the home care office for disconnection and they will say to come back in four hours. Pills would be so much simpler!

Sorry to hijack your post, Donna

sun

I burned tomato red within seconds on 5FU.....was not so sensitive with xeloda but one of the courses went through the winter......so that doesn't count....

mags

Xeloda Side Effects

Hi dmj,

My onc put me on Xeloda back in December as maintenance chemo. 

When I received my first bottle of the drug, I was also given a goodie bag from the manufacturer Genetech.  The company sponsors a FREE program to assist patients taking the drug that includes a help line you can call 24 hours a day and speak with a registered nurse trsined in Xeloda and its side effects.  You can find out more and register for the FREE program at http://www.xeloda.com/resources/.  

As far as side effects are concerned, in addition to the resources provided by the Xeloda help line, you can get more information from Chemocare.com.  You can find specific Xeloda information including a list of side effects at http://chemocare.com/chemotherapy/drug-info/Xeloda.aspx. 

As far as side effects I've personally experienced, the worst is the Hand and Foot Syndrome.  It produces peeling and sores (not open wound type) on your hands and feet that includes numbness in the fingers and toes and the bottoms of the feet.  While it started during my second two-week "on" cycle, it didn't get bad until my third two-week "on" cycle.  It has gotten bad enough now that my onc has changed me to one-week on and one-week off cycle.  It's very important to get ahead of the Hand & Foot Syndrome.  There are various creams and ointments you can use, but among the most popular and from what I've learned from other patients on various message boards are:

1. Uddery Smooth Udder Cream - yes it was developed for cows to reduce the irritation from repeated machine milkings.  The "goodie bag" I received from Genetech included a small tube of it.  You might be able to buy it from a local pharmacy although I wound up buying a supply from Drugstore.com

2.  Zim's Crack Creme is also good. I bought a supply from Drugstore.com

3. In addition, an onco nurse passed the following along to another patient, although I haven't tried these myself.

   a.  Any lotion with Dimethicone is "great" for cracked skin.

   b.  You can try a homemade concoction of:

      (1) 16 oz. baby lotion

      (2) 8 oz. Vitamin E cream

      (3) 8 oz. Vaseline

   c. Finally, you could try something called Aquaphor (sic) which was also recommended by another patient.  Supposedly it is very healing but messy. 

Typically, I lotion up my feet with Udderly Smooth before bed, wrap them in Saran Wrap and put on socks.  I also apply Udderly Smooth liberally to my hands four or five times a day.  Some wear white gloves, especially at night over the Udderly Smooth. 

The only other side effects I've experienced are some abdominal discomfort and some loose bowel movements.  Oh, and of course the ubiquitous low blood counts it seems accompany any chemotherapy. 

If you want to know more about my experience with Xeloda, drop me a note. 

Good luck and fair winds and following seas.

Rick