Is there a way of getting around wearing that stupid pump?!?!

Xeloda instead of the pump
Your option other than the pump is continue with the Xeloda in place of the 5FU pump after you're done w/ radiation and go back to the regular chemo again.
Xeloda (capectitabine) is just the oral pill version of the 5FU given through the pump. Studies comparing effectiveness of the two have shown Xeloda is just as effective and one study I read even had Xeloda 1% more effective than 5FU.
With that said, everyone reacts differently. Some people have more side effects w/ 5FU and some have more with Xeloda. I've done both several different times.
I'm currently back to the 5FU pump because I got such severe hand/foot syndrome with Xeloda. The peeling and blistering on my hands and feet got so bad that I was in agony all the time & couldn't take it anymore. It didn't always affect me in that way, however- I took it for quite some time before and didn't have those problems- not as bad, anyway. Some people do better on Xeloda than on 5FU.
I'd say, if you're at your wits ends with the pump, then it's definitely worth talking to your onc about trying the Xeloda instead of the pump. You'll only know how you do on it with side effects if you try it.

Take care-
Lisa

buttercup02 said:

Thank You!
Thank You for the reply and the additional information I greatly appreciate it. This year has been such an experience for my husband and I - it can be so overwhelming - I feel like all we've done is live at doctor's offices since April. I won't be done with treatment until the middle of January 2012.

I've been told I'm being given a very aggressive treatment plan because I'm so young to have this specific cancer - the doctors were at a "loss" as to what to do with me when we first found out because there's no links as to why I have this.

Thanks again for the reply....

Welcome to the Boards
Hi Buttercup!

Welcome to the support boards! Sorry you have had to find us under the circumstances, but I'm glad you did. There's a wealth of information in all the various posts.... so much reading material! But there is probably an answer to almost everything somewhere in here

I don't think there are any links as to why we get the cancers we get. Colon Cancer used to be considered an "older person's" cancer... but by who's definition is considered old? Is over 50 old? Ask a 50 year old and you'll find them saying, "HECK NO!! Old is over 70!" Ask a 70 year old and they'll say, "Are you kidding?? Old is someone over 80!!" So just what do they mean by a cancer that older people get? Everyone is older than someone... and I think if you were to tell a 40 year old that they got it because they are old, they would be young enough to tear the person's face off who told them this . But it's true, more and more younger people are getting this disease all the time. That is why we all are most put out that doctors don't recommend the first colonoscopy until someone is 50 years old. That should be changed and even if it was changed to 40 yrs., that wouldn't have done you any good, would it? So, the bottom line is... there is no one particular reason why anyone should get any particular kind of cancer, or why someone else doesn't... it just is what it is.

Meanwhile... about the 5FU pump. I don't think any of us have enjoyed it when we've had to go the full 12 treatments. Like you say, it's like psychologically being attached to a leash, even though you aren't... it sure feels that way. And the biggest relief is the day when you get the darn thing taken off!

Now, is there something else you can do instead of the pump? As Lisa said, the Xeloda pills are basically the 4FU in pill form. But you are going to want to check with your Insurance company if they will pay for them. The pills are much more expensive than the 5FU infusion and pump and it's possible that your insurance won't cover it when, to get the same type of medication into your system, there's a cheaper way of doing it. When you were on radiation, quite often an oncologist will want you on the pill form. I forget what the reason is... my oncologist told me and it seemed to make sense at the time, but that was over 4 years ago so my memory can't be relied on to remember the details . But if your insurance will cover the cost and your oncologist agrees that it won't make any difference to your treatment, then go for it!

For me, we tried the Xeloda after I had had a nice 2 year break from chemo, but then had to go back on. The Xeloda and I did NOT get along at all the second time. I had some major side effects, mostly to do with my feet. They got sooooo sore, I couldn't walk on them. They were already nerve-damaged from the FOLFOX when I first went on chemo... and then the Xeloda attacked them with relish! Needless to say, I stayed on them and suffered because for the first 3 months the response was great to them... but then they stopped working So that was the end of that plan... and my feet were oh so grateful

Anywho... welcome to the Boards... I haven't been around for eons, but when I saw your post, I just wanted to make sure you knew about the cost factor and perhaps your insurance company might give you grief over this... and that would NOT be unusual

Cheryl from Vancouver

PhillieG said:

Never did Xeloda
Just the pump. The bag they gave me for it you could fit a fire extinguisher in so I got a smaller "fanny pack". I didn't find it to be a big deal at all. I went kayaking with it on with no problem. It sucked the weekend I had it on since I had to take baths instead of showers but that wasn't a big deal. The nurse who came ta my house to take it off was horrible. She made Nurse Ratchet seem like Florence Nightingale.
It was for the 6 months, every 2 weeks, so I wore it 12 times.
No biggie for me but we each have our own tolerances.

With the hands, try to avoid cold things (duh) and flex your fingers to keep them moving.
-phil

Nurse Ratchet??? LOL!
Oh Phil... that is horrible!! I have had the exact opposite experience with homecare nurses. While I was on the 5FU Pump (two different times) I had a homecare nurse come out to the apartment to unhook me and flush my port. Each and every one of the gals that came out were total angels!! If one has never met/seen an angel in person, come on up to Vancouver... they all work in homecare nursing .

I no longer am going through the 5FU and Irinitecan treatments. Had a horrible reaction to the Irinitecan, so as of the end of June, I was taken off the treatments and given August and July off as a break from chemo and to regain my strength and get over the respiratory problems I acquired from the Irinitecan. The homecare nurse came out in July and again in August to flush out my port. I told her that I guess that would be it for awhile since I'll be starting the Vectibix treatment, starting Sept 9th... so I won't need my port flushed every 5-6 weeks. She said that they would be sad to close my file... the nurses fight (ya, right... I believe her) over who gets to come and do my visit... so they aren't going to close my file. They will keep it open, and give me a call every 5-6 weeks to see how I'm doing and if there's ANYTHING they can do for me, in which case they'd hop right over. So I certainly can't call that Nurse Ratchett behaviour!! LOL!

I agree that there certainly are a lot worse things than having to wear the pump for 46 hours, BUT, there's no doubt that it is like being on a short leash. Showering is so damn difficult and when one's knees don't bend because of arthritis, a bath is not an option. I can certainly go out, go driving, go out with friends to restaurants, go shopping, etc. But it's the fact this damn pump is attached to you via the port. When you sleep, you have to put the pump above your head so you don't roll on it. Getting dressed into a bra and top (see, something you men don't have to think about!!) can be a real hassle, especially after a shower when you may still be damp. Twisting a bra from back to front on damp skin is a problem at the best of time... but doing it AND having to make sure the catheter is not in the way, or the bra is not pulling... well, it's enough to drive a girlie crazy

Happy Labour Day

Cheryl

pamness said:

The 5fu pump doesn't have to be so bad
My comments are not too popular on this board.

However, I am 4 years ned with stage 3A colon cancer - a shock - no risk factors. I handled the 5fu pump by calling it "George" , I found it annoying, sort of like the character "George', on Seinfeld." You may not relate to this, but think of it as being a slightly annoying friend. At night, I pulled an ottoman or chair up to my bed and rested "George" on it. The cord was so long it was OK. During the day, I hung it over my shoulder and wore blouses with buttons to thread out the cord. I never hesitated to tell people what it was.

At various points of time: I left it on a taxi seat, with me on the other side of the door; dropped it on the floor when I got up to use the bathroom, forgot it on the table in a restaurant. All in all, not that bad and pretty funny.

Don't think of it as a leash. It may well save your life. Is it annoying yes, but afterwards lends itself to great stories. Don't let it bother you.

The hand numbing should be discussed with your oncologist. When mine stopped going away between treatments, they stopped the oxaliplatin. Every person is different.

Pam

Pam,
Don't be a stranger! Those were great comments.

I started out leaving mine on the floor next to the bed (same thing, a long leash), but one morning I woke up and the floor was wet, then I realized the kitten had chewed through the tubing. My first concern was that she had consumed some of the cocktail, but I quickly figured out that the wet spot was my blood (no pressure from the pump, so the natural pump sent the fluid in the opposite direction).

Luckily it was a disconnect day. I plugged the leak and went in to the infusion center. When I showed it to the nurse she just about had a heart attack (for some reason I enjoyed that, maybe it's because she is always sticking me with needles).

westie66 said:

5FU Pump
Hi: I wear the pump for 42 hours as well but have gotten used to it. I just don't shower or bathe for those 2 days (sorry!). My dog doesn't chew things thankfully. I've had some "interesting" tangles with clothing while dressing and undressing! I have a friend who has stomach/esophagous cancer and she has the 5FU pump on 24/7 (she is in her 2nd month of wearing it and she has to have a caregiver come and bathe her - imagine that horror!). I think there is an IV infusion form of 5FU too. At least I received two information sheets for 5FU, one for the pump and one for the IV format.
I also asked my incologist about Xeloda. In Ontario, Canada it is very very very expensive, more expensive than oxaliplatin (I already pay $7000 for 3 treatments of oxaliplatin which is not covered by the government or my medical plan) and he felt it wasn't as effective either. The pill form is convenient however!
The FOLFOXFIRI treatment appears to be working on my peritoneum nodules (secondary from my gallbladder cancer which is gone) - no progression, some reduction in size, and some disappearance of nodules).
Cheryl

One Cheryl to another
Hey Cheryl! I'm the other Cheryl, from BC

It absolutely amazes me the differences in our provincial coverage. Maglets and I and a couple of other Canadians have had discussions about this and it really is amazing.

Yes, the Xeloda (aka Capcetabine) is a darn expensive pill... mind you, it sounds like the oxaliplatin is expensive too! I hate to say this, in case I'm wrong and another BC person will come out and tell me it is not so where they are in BC, so I will only speak for Vancouver (I'm narrowing down my borders all the time! LOL!). Here in Vancouver, the BC Cancer Agency covers all chemo-related drugs, so when I was on the 5FU + Oxy (FOLFOX), it was covered by the Cancer Agency. When I was to have 6 weeks of daily radiation, my oncologist wanted to switch me from the infusion of 5FU to the pill form, but since the BC Cancer Agency had been paying for the infusion, they weren't willing to now start paying for the more expensive pill form when they were both doing the same thing... so my Extended Health stepped up and covered the 6 weeks of Capcetabine (Xeloda). Oxy was covered all along, although I had such a bad time with neuropathy in my feet, my onc took me off after 10 treatments.

I am about to start Vectibix tomorrow, and then get it every 2 weeks. This also is very expensive in Canada. Something like $30,000 for every 8 weeks of treatment. But the BC Cancer Agency covers this cost. So, I have had other prescriptions that I take to offset side affects, or help try to manage the chronic arthritis pain which the Oxy and chemos have aggravated... but those prescriptions are covered by my Extended Health and or Pharmacare (provincial drug coverage). BC Medical has covered my visits to my GP and I'm assuming my oncologist and specialist visits... not 100% sure about that since my oncologist works with the BC Cancer Agency so maybe they cover their oncologist visits.

But it amazes me how Ontario folk have to pay so much out of pocket, if they are to get the same treatments that are standard protocol across Canada. Go figure, eh?

West Coast Cheryl