It's Game Time!!

Lilmiss82
Lilmiss82 Member Posts: 257 Member
So tomorrow at 11:15 am I will have the pleasure of receiving my first cocktail of FOLFIRI. I've decided to switch from the 5-fu pump to the pills, which should be interesting, but I need a break from that pump. Anyways, I spoke with my oncologist today and he stated that I would get my infusion every 3rd week. Is this normal?? I thought it would be like FOLFOX and get it every other week. Why do you think I would have the infusion in this order? Not that I mind having a long recovery time but it just seems to long in between treatments. I worry a lot, can't you tell:)? Oh one more thing, my CEA was taken yesterday, first time since my biopsy and it has gone down to 1.8 (2.8 before biopsy)!! I really think my supplements are helping, but who knows , I just haven't seen them this low in a long time and was super happy to hear my results. Anyways, wish me luck tomorrow, and I'll more than likely post soon, telling you guys all about my chemo hangover:)

Comments

  • plh4gail
    plh4gail Member Posts: 1,238 Member
    Good luck beautiful! You'll do great!
    Yeay for your attitude! you go get'em. I had Folfiri every two weeks and honestly I think it made me feel more sick in a tired kind of way. Very weak and pale. So since you seem to be doing well with what you have been doing to your body....enjoy the little lengthening between infusions. Funny thing with food was on folfiri I wanted food that had strong flavor. My loved ones wanted to bring me soup and rice like on the other treatments I had and all of a sudden if it wasn't Italian or Mexican, I didn't like it. And everything was waay too salty. Even if it wasn't salted. lol. oh.....I lost some hair. But whatever. I want to know what supplements you are on please!! I took Biotin after I finished for hair growth and a friend just told me about a shampoo "ovation" i may try.

    You're going to do great!

    Gail
  • here4lfe
    here4lfe Member Posts: 306 Member
    3 weeks
    That's my wife's regime. Infusion of Irinotecan, Avastin and some steriods etc, with 2 weeks of Xeloda pills. Good Luck.

    Best
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Melissa
    Well, before I blow sunshine up your tailpipe, here's a litte heads up....

    First, who knows what a normal routine is with chemo anymore? The 'norm' is every 2 weeks over a 6-month period. But, the extra week could be a blessing in disguise for you. If that's the way they want to go, I'd ride with it.

    Folfiri was very harsh on me. I won't go into it, 'cause I don't want to dent your enthusiasm and I'm sure you'll do better than me. After 51x, my body reacted differently than a nice young body like yours will. There is fatigue and nausea, diarrhea for some but that was not a huge issue for me. It was just a tough treatment for me.

    Switch from Pump to Xeloda? Your body will tell you this. Having done both, I like the pump despite it's inconveinences. First, because it's covered by the medical plan and Xeloda is a prescription medication, which will mean a co-pay.

    I found Xeloda to be very hard on my stomach. And it wrecked my feet so bad that I could not hardly stand or walk in shoes after several months. Of course, the doctors told me nothing to expect.

    There might be huge blistering or peeling of your feet as the toxicity builds up in your body from the Xeloda. I was doing 4000 mg a day / 8 pills. Originally started on the 14 on / 7 off program.

    But, when it got so bad, we switched and did 7 on / 7 off and that seemed to be just as effective and somewhat easier.

    Your fingertips will probably turn a brighter red and could get irritated like with typing or trying to open bottles, tie your shoes etc.etc. Or, you might have good dexterity and be ok there.

    But the feet is where you've got to watch. Go buy a tin of Bag Balm. Smear it all over your feet and then put socks on over that to keep in the moisture. Do this 3x a day at least, morning, evening and before bedtime. Jump on it from the start and I think you'll head off the problems that I had.

    My doctor told me nothing. That's why I stay here on this board, Melissa. To give folks like you the head up that I never got.

    You can take a variety of things for nausea. The pills just ate my guts up. I found sometimes some milk would coat the lining and sort of allievate the aggravation.

    They may start you off on 4000 mgs a day, but could move you down to 3000 if you have a hard time with it.

    Ok, "gametime" as you say. Get in there and chase it down. All the best of luck with this new treatment. I hope you do well with this regimen.

    -Craig (woops, I mean Rock)
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    Sundanceh said:

    Melissa
    Well, before I blow sunshine up your tailpipe, here's a litte heads up....

    First, who knows what a normal routine is with chemo anymore? The 'norm' is every 2 weeks over a 6-month period. But, the extra week could be a blessing in disguise for you. If that's the way they want to go, I'd ride with it.

    Folfiri was very harsh on me. I won't go into it, 'cause I don't want to dent your enthusiasm and I'm sure you'll do better than me. After 51x, my body reacted differently than a nice young body like yours will. There is fatigue and nausea, diarrhea for some but that was not a huge issue for me. It was just a tough treatment for me.

    Switch from Pump to Xeloda? Your body will tell you this. Having done both, I like the pump despite it's inconveinences. First, because it's covered by the medical plan and Xeloda is a prescription medication, which will mean a co-pay.

    I found Xeloda to be very hard on my stomach. And it wrecked my feet so bad that I could not hardly stand or walk in shoes after several months. Of course, the doctors told me nothing to expect.

    There might be huge blistering or peeling of your feet as the toxicity builds up in your body from the Xeloda. I was doing 4000 mg a day / 8 pills. Originally started on the 14 on / 7 off program.

    But, when it got so bad, we switched and did 7 on / 7 off and that seemed to be just as effective and somewhat easier.

    Your fingertips will probably turn a brighter red and could get irritated like with typing or trying to open bottles, tie your shoes etc.etc. Or, you might have good dexterity and be ok there.

    But the feet is where you've got to watch. Go buy a tin of Bag Balm. Smear it all over your feet and then put socks on over that to keep in the moisture. Do this 3x a day at least, morning, evening and before bedtime. Jump on it from the start and I think you'll head off the problems that I had.

    My doctor told me nothing. That's why I stay here on this board, Melissa. To give folks like you the head up that I never got.

    You can take a variety of things for nausea. The pills just ate my guts up. I found sometimes some milk would coat the lining and sort of allievate the aggravation.

    They may start you off on 4000 mgs a day, but could move you down to 3000 if you have a hard time with it.

    Ok, "gametime" as you say. Get in there and chase it down. All the best of luck with this new treatment. I hope you do well with this regimen.

    -Craig (woops, I mean Rock)

    Good luck Mel!
    will pray for you!
  • lisa42
    lisa42 Member Posts: 3,625 Member
    change in chemo schedule
    Hi Melissa,

    When I was on Xeloda, my schedule also changed from every two weeks to every three weeks. It's because (if your schedule ends up like mine was) you'll need to take Xeloda every day for two weeks, then you'll get one week off of it. Your body needs that break. The amount of other chemo (irinotecan from Folfiri) will be adjusted so it works- you shouldn't end up getting the same amount but just a week farther apart- I think the dose is slightly upped. I'm sure if you ask, your oncologist can explain it to you.

    Good news on the CEA going down! I'll think of you today, as we're both getting chemo today. Take care!!

    Lisa
  • laurettas
    laurettas Member Posts: 372
    What a great attitude!
    Love your enthusiasm! Am looking forward to your updates--can't imagine the cancer having a chance.

    For those of you who have taken Xeloda, what were your experiences? Were the side effects the same as 5FU, worse, different? Did you have much trouble with hand/foot syndrome? Thanks!
  • keystone
    keystone Member Posts: 134 Member
    laurettas said:

    What a great attitude!
    Love your enthusiasm! Am looking forward to your updates--can't imagine the cancer having a chance.

    For those of you who have taken Xeloda, what were your experiences? Were the side effects the same as 5FU, worse, different? Did you have much trouble with hand/foot syndrome? Thanks!

    My husband was on a very
    My husband was on a very high dose of xeloda along with his radiation pre-surgery. He now is on 5-FU. The xeloda was very hard on him as far as nausea until we researched and found that folic acid increased side effects. The US fortifies all breads, pastas and cerials (especially cerials) with folic (folate). The day after pulling so much of this from his diet he was a new person. I have shared this with others on here with the same results. He did not have the foot and mouth and his oncologist was surprised since of his dosage (3600 mg every day for 6 weeks straight yikes!) Hope this helps out! Good luck sweetie! Stephanie
  • laurettas
    laurettas Member Posts: 372
    keystone said:

    My husband was on a very
    My husband was on a very high dose of xeloda along with his radiation pre-surgery. He now is on 5-FU. The xeloda was very hard on him as far as nausea until we researched and found that folic acid increased side effects. The US fortifies all breads, pastas and cerials (especially cerials) with folic (folate). The day after pulling so much of this from his diet he was a new person. I have shared this with others on here with the same results. He did not have the foot and mouth and his oncologist was surprised since of his dosage (3600 mg every day for 6 weeks straight yikes!) Hope this helps out! Good luck sweetie! Stephanie

    Thanks for the info Stephanie
    Now one more question. Why did they switch him from Xeloda to 5FU? I know for some people it is the money issue since 5FU is less expensive.
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    keystone said:

    My husband was on a very
    My husband was on a very high dose of xeloda along with his radiation pre-surgery. He now is on 5-FU. The xeloda was very hard on him as far as nausea until we researched and found that folic acid increased side effects. The US fortifies all breads, pastas and cerials (especially cerials) with folic (folate). The day after pulling so much of this from his diet he was a new person. I have shared this with others on here with the same results. He did not have the foot and mouth and his oncologist was surprised since of his dosage (3600 mg every day for 6 weeks straight yikes!) Hope this helps out! Good luck sweetie! Stephanie

    pulling folate out
    My wife has done much better by systemically eliminating synthetic folate in the food supply (bread, flour, pasta etc). Before the toxicity could build up over a few months.

    We have to mix our own vitamin forumla to avoid the standard synthetic folate. She has to use leucovorin (calcium folinate), closer to natural B9, with her UFT oral chemo to be effective. Also she takes the PSK to build up her WBC, RBC, platelet blood parameters.
  • maglets
    maglets Member Posts: 2,576 Member
    tanstaafl said:

    pulling folate out
    My wife has done much better by systemically eliminating synthetic folate in the food supply (bread, flour, pasta etc). Before the toxicity could build up over a few months.

    We have to mix our own vitamin forumla to avoid the standard synthetic folate. She has to use leucovorin (calcium folinate), closer to natural B9, with her UFT oral chemo to be effective. Also she takes the PSK to build up her WBC, RBC, platelet blood parameters.

    luck
    very very best of luck....hoping it all goes well

    quoting my chemo nurse once again

    Maggie..."until you have a problem .....there is NO problem"

    have to learn to not anticipate a problem....

    have a hug

    mags
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Praying for you
    Praying this goes very well for you!

    *hugs*
    Gail
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    Good Luck
    And I've always been every 3 weeks, so not that unusual, when you're not on the pump.
    Here's to you doing well!!
    Winter Marie
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    keystone said:

    My husband was on a very
    My husband was on a very high dose of xeloda along with his radiation pre-surgery. He now is on 5-FU. The xeloda was very hard on him as far as nausea until we researched and found that folic acid increased side effects. The US fortifies all breads, pastas and cerials (especially cerials) with folic (folate). The day after pulling so much of this from his diet he was a new person. I have shared this with others on here with the same results. He did not have the foot and mouth and his oncologist was surprised since of his dosage (3600 mg every day for 6 weeks straight yikes!) Hope this helps out! Good luck sweetie! Stephanie

    Stephanie
    My onc actually told me a while back that the less bread you eat while on Xeloda, the better it works on you. Since I'm not a bread eater I've done well on it. Surprised Onc didn't mention this. What a dosage he had, yikes is right!!
    Winter Marie