The Colon Club

Susan, YES, in response to your question. DH found the side effects from the Xeloda much worse than the 5fu. He was taking 8 Imodium a day and I thought we were going to have to ask for the prescription stuff. I was grateful he had a colostomy pouch! He lost 3 pounds in 7 weeks which isn't much but still. His feet had the skin peeling off the bottoms: I'd rub them with Eucerin or Lubriderm with urea every night. Feet are fine now. His hands cracked, especially around the nails. Legs swelled slightly. Bilirubin rose to 3.9 after 3 doses and onc refused to treat until it was under 2 for 4 weeks. So they decided it was back to the 5FU. I asked about the side effects and was told the usual "each person is different."

Now, I have heard that some people say Xeloda is a piece of cake. That's why he wanted to try it, because he's a chemo-for-lifer. Taking 3 pills after breakfast and 3 after dinner was easy for 2 weeks, except for the side effects! There was no nausea.

He goes for infusion on Tuesday, takes the subway to work on Wednesday, and stays home to nap on Thursday, then back to work on Friday and the following week. I wish he could go Thursday but Tuesday is the day his oncologist is at the hospital. I learned to disconnect him from the port, it's very easy. Home health came the first few times to show me.

If you are working pediatrics be careful of catching germs from the little ones! Or the big ones.

M

Caat55 wrote:So the oxi is the big culprit for neuropathy. It am so back and forth with option 1 and 2.

Susan

So my advice is
Option 1: Try Xeloda for one or two cycles and see if you start getting HFS. If so, discontinue and switch to 5FU pump.
Option 2: Start with 5FU pump so there's no risk of HFS, but there will be some inconvenience and different side-effects.
In either case, talk to your onc about your profession and ask them to monitor any neuropathy from the oxaliplatin.

Hope this helps!
Juliej

[/quote]

Yup. I know that in spades. The Oxaliplatin has been the worst part of treatment for me.

Here's a video of me after 26 days of Xeloda and Radiation: https://www.youtube.com/watch?v=R_ipaq4HTk0

I have not played tennis since surgery. The Oxaliplatin makes it hard to be as active as normal for two weeks after the infusion and I need the recovery week to catch up on stuff that I didn't do the first two weeks. I have run into people that take Short-Term Disability for Adjuvant or a day or two off for infusion day and afterwards and others that spend a lot of the day sleeping. I normally consider myself physically tough but Oxaliplatin has turned me into jello.

Option 1: Try Xeloda for one or two cycles and see if you start getting HFS. If so, discontinue and switch to 5FU pump.
Option 2: Start with 5FU pump so there's no risk of HFS, but there will be some inconvenience and different side-effects.
In either case, talk to your onc about your profession and ask them to monitor any neuropathy from the oxaliplatin.

Totally agree with Juliej here. That's what I did....
I know some friends started Xeloda had severe blisters on her feet but not on the hands. Everybody is different.

Pump gets disconected in clinic, I had it on Tuesday, off on Thursday, somthing like 46 hrs after start. It would be hard for you to disconnect it unless you have health proffesional to do it.
Yours is gonna be disconected on Saturday. Sunday you will feel it, more than any other day, side effects of chemo.
You can try Monday, see how it goes, might have to take extra day as therapy progresses.

Yes, I have red, blistery feet from the Xeloda. It hurts to walk around. It didn’t manifest itself until cycle 4 or 5. Hopefully now that I’m done it will go away eventually.

From the stats Julie gave, its 50% chance of hand foot syndrome. That's pretty high for me as my hands are my job and every sense. I am leaning toward 5 fu if I can get them to let me do disconnecting.
It's so much.
Susan

Caat55 wrote:From the stats Julie gave, its 50% chance of hand foot syndrome. That's pretty high for me as my hands are my job and every sense.

Prior post:

O Stoma Mia wrote:There are a couple of things related to HFS prevention that should be mentioned before the start of therapy. One of these is the recommendation to have a good pedicure/manicure before starting chemo. Other suggestions for minimizing the impact of HFS are given in the quote below. This might include minimizing use of gym machines that require pressing the hands against a hard surface, (Check with your doctor if you have any doubts.)



PREVENTION [HAND FOOT SYNDROME]
According to the American Society of Clinical Oncology (ASCO), patients at risk for HFS and HFSR should be instructed on the following preventive measures:


* Limiting exposure of hands and feet to hot water when washing dishes or bathing
* Taking cool showers or baths
* Avoiding exposure to sources of heat, including saunas, sitting in the sun, or sitting in front of a sunny window
* Avoiding activities that cause unnecessary force or friction on the feet, such as jogging, aerobics, and long walks
* Avoiding contact with harsh chemicals used in laundry detergents or household cleaning products
* Avoiding the use of rubber gloves to clean with hot water, as rubber traps heat against the skin
* Avoiding the use of tools or household items that require pressing the hand against a hard surface, such as garden tools, knives, and screwdrivers.7,11

A "3C" approach to TKI-associated HFSR outlines the following guidelines for prevention:

* Controlling for calluses: before and during treatment, prophylactic removal of hyperkeratotic areas with a manicure or pedicure
* Comfort with cushions: protection of tender areas, pressure points, and pressure-sensitive areas of the hands and feet through the wearing of well-padded, well-fitted, soft shoes; foam-type absorbing soles, and shock absorbers to relieve painful pressure points
* Cover with creams: use of an emollient or keratolytic agent on callused areas of the palms and soles to moisturize and aid in natural exfoliation.10


Ref. http://www.oncologynurseadvisor.com/ce-courses/prevention-and-management-of-hand-foot-syndromes/article/174390/

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=58447&p=469055#p469055

Thanks for all the great information and support. Waiting to hear back from infusion folks if they will teach me or let home health nurse teach me to disconnect myself.
I can't afford to have permanent hand issues, even temporary ones would mess up my career.
Susan

Have you decided on the type of IV port to get? There are different types, and some are more convenient than others.

O Stoma Mia wrote:Have you decided on the type of IV port to get? There are different types, and some are more convenient than others.

I wasn't told I had a choice. I will call Monday, thank you. Is there a thread on the blog about them?
Susan

I had a Power Port, and it was a lifesaver. My Dr did not give me a choice, he just said "you'll be getting a port". He was right. Very easy to access, and not able to be seen. They'd use it everytime I needed an IV, too, and I liked that.

I had both Xeloda and 5FU during my treatment. With Xeloda, I did have HFS, and towards the end it got bad enough that they reduced the treatment. With 5FU, I felt awful. Tired, nauseated and I lost some hair. I found it harder to function on the 5FU. But the HFS did cause me some issues while on Xeloda. For me, Xeloda was the lesser evil. Everyone is different, so you might start out with the one that feels like the least bad option to you and go from there.

Good luck to you,
Cj

Maybe I start with xeloda, see how it goes. Simpler for sure.
Thank you.

Caat55 wrote:

O Stoma Mia wrote:Have you decided on the type of IV port to get? There are different types, and some are more convenient than others.

I wasn't told I had a choice. I will call Monday, thank you. Is there a thread on the blog about them?
Susan

Here is what MSKCC says about IV ports
.
https://www.mskcc.org/cancer-care/patient-education/your-implanted-port

Here is a search for threads that have "port" in the title:

http://coloncancersupport.colonclub.com/search.php?keywords=port&terms=all&author=&sc=1&sf=titleonly&sr=topics&sk=t&sd=d&st=0&ch=300&t=0&submit=Search