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

I'm 30 years old and was diagnoised with Stage 3 Colon Cancer in April - no cancer in my family so this was a huge shock to my husband and I. I had major surgery to remove part of my colon and the tumor soon after the discovery. I just finished 6 rounds of chemo (oxaliplatin) through a port in my chest. I do this every other week and leave with a pump (5 FU) that I wear for 46 hours after the infusions. I'll be starting 5 weeks of Radiation along with xeloda chemo pills (8 a day) - radiation will be every day for those 5 weeks then I'm back to another 6 rounds of chemo through the port - is there any other options out there for the pump? I hate that thing - it's the worst part of chemo - I feel like I'm on a leash.

Also, does anyone have any advice on dealing with the numb hands/cramping hands/feet from the oxy?

Thanks in advance!!!
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Comments

  • lisa42
    lisa42 Member Posts: 3,625 Member
    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
    buttercup02 Member Posts: 4
    lisa42 said:

    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

    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....
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member

    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
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    Buttercup
    Hello there, I think both Lisa and Cheryl both gave you great advice. The Xeloda for me was great, but then I didn't do it a second time like Cheryl did, other then that I can't add anything then what was already said.
    Except, of course sorry you had to find us, cancer sucks, but guess what? You will get through this. We're here for you hun.
    Take care, and any questions, any at all, just ask away, someone is bound to have an answer or suggestion or sage advice.
    Thinking of you and yours,
    Winter Marie
  • maglets
    maglets Member Posts: 2,576 Member

    Buttercup
    Hello there, I think both Lisa and Cheryl both gave you great advice. The Xeloda for me was great, but then I didn't do it a second time like Cheryl did, other then that I can't add anything then what was already said.
    Except, of course sorry you had to find us, cancer sucks, but guess what? You will get through this. We're here for you hun.
    Take care, and any questions, any at all, just ask away, someone is bound to have an answer or suggestion or sage advice.
    Thinking of you and yours,
    Winter Marie

    hello Buttercup
    welcome to this forum

    I too am an old timer......and I have used xeloda twice....once alone after liver mets and the second time after the second round of liver mets....I was also on oxy.

    Unlike Cheryl I did have a really good experience with xeloda.....and I had a really rough time the first time I did 5fu....so everyone surely is different

    Cheryl is right about the cost of xeloda....our plan would not cover the cost and my onc and onc pharmacist did some pretty fancy foot work to get it covered....

    again like Cheryl I am from Canada so sometimes these insurance things are different

    blessings and ask away on anything you like.....

    maggie
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    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
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
    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 :D

    Happy Labour Day :D

    Cheryl
  • pamness
    pamness Member Posts: 524 Member
    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
  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    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).
  • marqimark
    marqimark Member Posts: 242 Member
    PUMP
    I hated the pump and had complications with the original one.
    The original used air pressure to infuse the 'poison' and took two extra days the first time I had it on (pinched line).
    Then the pumps infused way to fast, finishing up to eight hours too soon.
    They changed it to a heavy mechanical pump that was much more consistant.

    That said, I am glad that I didn't have to take the pills, with all their side effects, for two weeks as opposed to 46 hours with the pump.
    Also, my insurance covered infusions 100% and my co-pay for each round of the pills would have been $550, an amount I could not come up with.

    Whatevr choice you make, I hope all goes well....

    Mark
  • christinecarl
    christinecarl Member Posts: 543 Member
    I wish I had some options to
    I wish I had some options to give you about the pump. It does suck, it was a constant reminder that I had cancer. I hated draging that damn thing to work, or trying to sleep while attached to it. But soon you will not have to deal with it and it will have done what it is supposed to do. Keep your chin up!
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member

    I wish I had some options to
    I wish I had some options to give you about the pump. It does suck, it was a constant reminder that I had cancer. I hated draging that damn thing to work, or trying to sleep while attached to it. But soon you will not have to deal with it and it will have done what it is supposed to do. Keep your chin up!

    My last onc. visit I
    My last onc. visit I questioned about the pills vs. the pump....he said pills not as effective!!! I've brought it up a couple of times only to be shrugged off. I find the pump extremely frustrating.
  • pamness
    pamness Member Posts: 524 Member
    Buckwirth said:

    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).

    The 5fu pump doesn't have to be so bad
    I loved your story. I did not have a dog during my cancer treatment. Currently, I have two Coton du Tulears (a fancy name for little white dogs). They would have caused some real havoc with the cord from the pump.

    I wish you all the best.

    Pam
  • westie66
    westie66 Member Posts: 642
    smokeyjoe said:

    My last onc. visit I
    My last onc. visit I questioned about the pills vs. the pump....he said pills not as effective!!! I've brought it up a couple of times only to be shrugged off. I find the pump extremely frustrating.

    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
  • menright
    menright Member Posts: 256 Member
    alternate pump
    You might want to check with Sloan Kettering NYC. They have a pump device that does not include the battery and the noise. I had both types for 5FU and much preferred the non-battery pump device. Check with Dr. Kemeny and her Chemo nurses at Sloan Kettering in New York City.

    I also had Xeloda and that too is the oral form of 5FU.

    Best of luck with your search.

    Mike
  • yoga
    yoga Member Posts: 87
    the pump thing
    Hi there Buttercup (love the name!),

    I too am stuck wearing the pump for 46 hours every two weeks - I did my 26th round last week, so am quite used to it by now. I have a long shower just before heading off to chemo, don't have one the next day and am in the shower immediatley the home nurse leaves. I take the time to be lazy at home . . . . putter around, maybe bake some muffins, catch up on some laundry, rest, watch a silly movie, chat with friends, read and (of course) research my cancer in the internet. I go out of I really need to, but usually just hang out around the house.

    I also take some quiet time to focus me and think about all of the good things the treatment is allowing me to do and all of the good things I want to acchieve when I am finished.

    Yes, it is rather inconvenient to wear, but as I tell myself, 'It could be worse.'
    You will make it through,
    yoga jo
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
    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
  • buckeye2
    buckeye2 Member Posts: 428 Member
    I think my husband hates
    I think my husband hates that pump more than anything.(he gets it off today). He insists I call the home care nurses each time to confirm they will be here at the right time to disconnect do he doesn't have to be connected one minute longer than necessary. At the party I am planning when he is pronounced NED, we are burning that bag. Lisa
  • westie66
    westie66 Member Posts: 642
    buckeye2 said:

    I think my husband hates
    I think my husband hates that pump more than anything.(he gets it off today). He insists I call the home care nurses each time to confirm they will be here at the right time to disconnect do he doesn't have to be connected one minute longer than necessary. At the party I am planning when he is pronounced NED, we are burning that bag. Lisa

    The dreaded chemo pump
    Hi all: I am wearing mine as we speak. It comes off at 10 am Sunday. Mine does not have a motor - there is some little device on my arm that uptakes the 5FU somehow. I take a long shower before and don't take another one until the pump comes off. I am going to a funeral tomorrow and then a dinner party with the pump on. It causes interesting conversations!
    There may be an IV version available, at least that is the information I was given. I had no choice in the end though.
    Vancouver Cheryl - yes it is interesting how provinces differ in coverage. We hear all the time about BC's wonderful drug coverage - best in Canada. My brother lives in Kelowna. I wonder if each state in the USA has different coverage. Different medical plans sure do. Mine is very good (University of Western Ontario) - good for life - but they don't cover oxaliplatin and definitely not xeloda.
    Cheryl
  • marqimark
    marqimark Member Posts: 242 Member
    Work
    The first month and a half, I tried to work with the pump on for one half day. Chemo Wed, Thurs off, work and pump off Fri on lunch hour. In retrospect, I probably shouldn't have exposed my co-workers to the "PUMP". (>_<)

    Mark