5 FU hates me...that's all there is to it!

Options
Even with a 20% cut in the dose...no sooner did I loose the pump and the mouth sores pop up...the only difference this time is I don't bleed when I talk. Back to using my tube (after a whole 6 days reprieve after healing from the last 5 FU). It's hard to keep my weight up with 3 weeks on the tube, and only one week to add some pounds...before they hit me again with another dose.

That's another thing....I've been getting chemo since April 24th, every 3 to 4 weeks...does this seem like over kill? Do I sound like I'm trying to finagle a way out of the last treatment Aug. 28th? I am!! :) I'm tired of feeling this crappy.

p
«1

Comments

  • Laralyn
    Laralyn Member Posts: 532
    Options
    Ugh!
    I'm so sorry the treatment is abusing you. It sounds awful. I don't know anything about the treatment for your type of diagnosis, so I just wanted to let you know that I'm thinking of you. I know you'll get through this!
  • katenorwood
    katenorwood Member Posts: 1,912
    Options
    Almost done girl !
    Phrannie,
    Good lord girl it seems like they're putting you through the preverable ringer ! I'm so sorry you have to endure this. It won't be long and you'll be coming out the other side. You have been one tough cookie ! My thoughts and prayers are with you lady ! Katie
  • hwt
    hwt Member Posts: 2,328 Member
    Options

    Almost done girl !
    Phrannie,
    Good lord girl it seems like they're putting you through the preverable ringer ! I'm so sorry you have to endure this. It won't be long and you'll be coming out the other side. You have been one tough cookie ! My thoughts and prayers are with you lady ! Katie

    Sorry to hear
    Oh so sorry to hear. Wish there was a solution to offer but I battled those sores on my lips until tx finished. They will be the side effect I always remember. Can you put enough Ensure or the like in your tube to keep the weight up?
  • boardwalkgirl
    boardwalkgirl Member Posts: 269
    Options
    So sorry Phrannie51, I had a
    So sorry Phrannie51, I had a friend that had horrible side effects from 5FU too. I think mouth sores are just the worse too. Will be praying they go away soon. I don't blame you, I would be trying to figure a way out too.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Options
    One More...
    You can hang...one more just to kick cancer azz....you can do it.

    JG
  • Grandmax4
    Grandmax4 Member Posts: 723
    Options
    you can do this
    you can do this, you CAN do this!!!
  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
    Options
    sorry it is so bad
    Hi Phrannie,

    While I am 100% on your side, if the doctor says you need all the chemo scheduled, then I will tearfully have to agree with them. I know it is hard, but do your best to tough it out. If you need more time, tell them. I am sure if they had any doubts about you completing this round, they’d stop it and let you rest. Find something high calorie (something) to put in your tube.

    We are with you all the way.

    Best,

    Matt
  • Sam999
    Sam999 Member Posts: 319 Member
    Options
    CivilMatt said:

    sorry it is so bad
    Hi Phrannie,

    While I am 100% on your side, if the doctor says you need all the chemo scheduled, then I will tearfully have to agree with them. I know it is hard, but do your best to tough it out. If you need more time, tell them. I am sure if they had any doubts about you completing this round, they’d stop it and let you rest. Find something high calorie (something) to put in your tube.

    We are with you all the way.

    Best,

    Matt

    Hi phrannie, so sorry to
    Hi phrannie, so sorry to hear about this. You will get thru this. Just keep thinking you are almost done, just few more days and all this will be behind us. Keep up with the vhc, you got to keep the weight up, specially since you are so skinny.

    Sam
  • phrannie51
    phrannie51 Member Posts: 4,716
    Options
    Thanks for the buck ups everybody.....
    what is it about the mouth sores that makes me such a weinie? I think I've been thru the rads and other chemo's...put one foot in front of the other, and just kept chugging along...but throw mouth sores at me, and all I want to do is hang in a chair all day, waiting for the next nap to get me out of here.

    I'll get thru it this time...and of course the next time, and then I'll never have to do it again...thanks everybody for being here....I'd go nuts without this site.

    p
  • osmotar
    osmotar Member Posts: 1,006
    Options
    5FU
    P,

    I hated the 5fu punp , not the drugs, but the annoyance of just wearing for 4 days, my last sesssion with it , I could hear it pump, yet when I wnet to have it disconnected,it showed I had just a few cm pumped it..the onco nurse made a call and she hooked me up to a bag or a push for the final treatment, they we all surprised it hadn't worked. I got chemo treatments every 21 days all day long..hang in there you ahve been doing freat so far.

    Linda
  • tuffenuff
    tuffenuff Member Posts: 277
    Options

    Thanks for the buck ups everybody.....
    what is it about the mouth sores that makes me such a weinie? I think I've been thru the rads and other chemo's...put one foot in front of the other, and just kept chugging along...but throw mouth sores at me, and all I want to do is hang in a chair all day, waiting for the next nap to get me out of here.

    I'll get thru it this time...and of course the next time, and then I'll never have to do it again...thanks everybody for being here....I'd go nuts without this site.

    p

    I feel the same way with
    I feel the same way with this sore throat this week and it only hurts when I swallow! We can only be so tough for so long before it gets to us.
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    Options
    osmotar said:

    5FU
    P,

    I hated the 5fu punp , not the drugs, but the annoyance of just wearing for 4 days, my last sesssion with it , I could hear it pump, yet when I wnet to have it disconnected,it showed I had just a few cm pumped it..the onco nurse made a call and she hooked me up to a bag or a push for the final treatment, they we all surprised it hadn't worked. I got chemo treatments every 21 days all day long..hang in there you ahve been doing freat so far.

    Linda

    Phrannie
    Finish line is real close- try to just focus on that. Sores are definitely no fun, but once it's over they should clear out fast. Naps are a good thing- this tx thing is only a temporary thing. You're doing great.

    kcass
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    Options
    Kent Cass said:

    Phrannie
    Finish line is real close- try to just focus on that. Sores are definitely no fun, but once it's over they should clear out fast. Naps are a good thing- this tx thing is only a temporary thing. You're doing great.

    kcass

    Sorry Phrannie...
    You are the tough one on the block in my opinion...we want you well so you just hang in there :)

    Best,

    Tim
  • VanessaSLO
    VanessaSLO Member Posts: 283
    Options
    Tim6003 said:

    Sorry Phrannie...
    You are the tough one on the block in my opinion...we want you well so you just hang in there :)

    Best,

    Tim

    Hey Phrannie, you are almost done!
    Hmm, I don't know if I will say it correctly in English... There's one saying taht really helps me thru troubles in my life or thru my dad's desease now... It goes something like this:
    THE NIGHT IS DARKEST BEFORE THE DAWN!

    This would indicate that before the dawn is actually the darkest time of night. So let's carry this words with us through this journey, because it always gets worse before it gets better.

    But you're a strong fighter and you will win this! Your goal is just around the corner! Hang in there!!
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Options

    Thanks for the buck ups everybody.....
    what is it about the mouth sores that makes me such a weinie? I think I've been thru the rads and other chemo's...put one foot in front of the other, and just kept chugging along...but throw mouth sores at me, and all I want to do is hang in a chair all day, waiting for the next nap to get me out of here.

    I'll get thru it this time...and of course the next time, and then I'll never have to do it again...thanks everybody for being here....I'd go nuts without this site.

    p

    Naps & Sleeping...
    Sometimes that's the best thing for you....

    When I was in the GroundHog's Days, naps were the best thing ever.

    They helped get through the daily routine, and of course healing the body.

    Not sure if you are still using the Mygard, or something else. I didn't really have any reactios to the 5FU or other chemo drugs. My rinse was a mixture of baking soda and hydrogen peroxide.

    Likw Linda, I just hate hearing the pump every 30 seconds or so... But I just got the mindset that every squirt was killing a cancer cell and keeping them from trying to grow.

    Best,
    John
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    Options
    Hates you?
    That's why they call it "FU".

    :)
    Deb
  • ditto1
    ditto1 Member Posts: 660
    Options
    Help wanted
    I am requesting we all meet this Saturday at an undisclosed location so we can Camoflauge the H & N bus. We will then proceed to load up P51 and put her in hiding until the 5FU mouth soars are completely healed. We will then load her up take her to the ONC doctor and request she be allowed to skip the last treatment and replace it with her favorite ice cream. I have no reason to believe they will not go along with our demands. If they choose not to we will fill all there trash cans with kleenex, and empty there water machine cups. Wow sorry P51 just dozed off for a minute but what a dream. Darn it was a dream, I guess I should have known that since all the doctors want to do the full treatments they originally outline and rarely seem to allow changes. I know it sucks, they always ask me my pain level, I tell them pain around a 3, but as far as the YUCK level for this treatment I tell them a 10. So hang in there and you will make it, we say it because its true but as tough as you have been its just that much more of an assurance. Well Im going to finish my NAP, hope the next dream lands me in an episode of Drive Ins, Diners, and Dives, with me driving the Camaro and eating anything that does not start with the letters BOOST
  • Isign4Him
    Isign4Him Member Posts: 36
    Options
    ditto1 said:

    Help wanted
    I am requesting we all meet this Saturday at an undisclosed location so we can Camoflauge the H & N bus. We will then proceed to load up P51 and put her in hiding until the 5FU mouth soars are completely healed. We will then load her up take her to the ONC doctor and request she be allowed to skip the last treatment and replace it with her favorite ice cream. I have no reason to believe they will not go along with our demands. If they choose not to we will fill all there trash cans with kleenex, and empty there water machine cups. Wow sorry P51 just dozed off for a minute but what a dream. Darn it was a dream, I guess I should have known that since all the doctors want to do the full treatments they originally outline and rarely seem to allow changes. I know it sucks, they always ask me my pain level, I tell them pain around a 3, but as far as the YUCK level for this treatment I tell them a 10. So hang in there and you will make it, we say it because its true but as tough as you have been its just that much more of an assurance. Well Im going to finish my NAP, hope the next dream lands me in an episode of Drive Ins, Diners, and Dives, with me driving the Camaro and eating anything that does not start with the letters BOOST

    I'm your fan too!
    Hang in there .......One more to go .... You can do it... I'm praying for strength for you.... And when we both come out on the other side we will have Tbone steaks and double cheeseburgers via web cam.... So now you have something to look forward to!

    In Christ, Kevin
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Options
    D Lewis said:

    Hates you?
    That's why they call it "FU".

    :)
    Deb

    FU
    Definitely named correctly....just sayin.
  • phrannie51
    phrannie51 Member Posts: 4,716
    Options
    ditto1 said:

    Help wanted
    I am requesting we all meet this Saturday at an undisclosed location so we can Camoflauge the H & N bus. We will then proceed to load up P51 and put her in hiding until the 5FU mouth soars are completely healed. We will then load her up take her to the ONC doctor and request she be allowed to skip the last treatment and replace it with her favorite ice cream. I have no reason to believe they will not go along with our demands. If they choose not to we will fill all there trash cans with kleenex, and empty there water machine cups. Wow sorry P51 just dozed off for a minute but what a dream. Darn it was a dream, I guess I should have known that since all the doctors want to do the full treatments they originally outline and rarely seem to allow changes. I know it sucks, they always ask me my pain level, I tell them pain around a 3, but as far as the YUCK level for this treatment I tell them a 10. So hang in there and you will make it, we say it because its true but as tough as you have been its just that much more of an assurance. Well Im going to finish my NAP, hope the next dream lands me in an episode of Drive Ins, Diners, and Dives, with me driving the Camaro and eating anything that does not start with the letters BOOST

    LOLOLOL Ditto!!
    Perfect dream....and to end it with food!! Oh boy! My kind of dream. I'm really hungry tonight...hoping I dream myself to a little Mexican restaurant tonight :).

    p