need help quick about chemoradiation

polarprincess
polarprincess Member Posts: 202 Member
edited March 2014 in Colorectal Cancer #1
Hi, i am just wondering if all of you who got chemoradiation got continous 5FU 24/7 with radiation. I have one week down and my pump is getting disconnected on Fridays for the weekend. I have never heard of this and the NCCN guidelines say it should be 24/7, so i am concerned about this. Everyone else i have talked to has gotten 8 weeks of fulfox with the radiation as well, and my doc is talking about only doing 4 cyles. I am stage IIIa. I am starting to really question her and just wondering if any of you have ever heard of this. I also posted this on another forum, but haven't had much luck getting many responses. Thanks

Comments

  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #2
    Never heard of that before ..
    Get a second opinion. Call this number and ask one of the nurses or Drs about this...1-270-444-3930....3 Drs ...Gould, Concepcion and Chua, any of those 3 can answer your questions.

    I did the 5fu 24/7 for 5 weeks and 25 rad treatments 5 days a week.....never heard of them taking the fanny pack off over the weekend but Im not sure....
  • pamness
    pamness Member Posts: 524 Member
    #3
    Get another opinion from a major cancer center
    continuous 5FU with radiation for 5 days is standard. It does not need to be 24/7, that is a different protocol. However - it is usually combined with 8 weeks of Folfox and surgery.

    I did mine:

    surgery
    8 rounds folfox - Oxaliplatin, leukovorin (a vitamin mix, but I guess it helps) a bolus of 5FU with pump for 46 hours, every other week and then on to 28 days of radiation with continuous 5U (5 days per week ) so basically 6 weeks. It is my understanding that this is the current standard for 3A - I was 3A - 2 positive nodes. I am currently 1 year plus ned. I was treated at Mass General - a very major cancer center.
  • pamness
    pamness Member Posts: 524 Member
    #4
    Buzzard said:

    Never heard of that before ..
    Get a second opinion. Call this number and ask one of the nurses or Drs about this...1-270-444-3930....3 Drs ...Gould, Concepcion and Chua, any of those 3 can answer your questions.

    I did the 5fu 24/7 for 5 weeks and 25 rad treatments 5 days a week.....never heard of them taking the fanny pack off over the weekend but Im not sure....

    were you 3A - didn't you have the fanny pack and folfox
    I am not sure that 25 days or 28 days with two days off is that different, but if you were 3A, didn't you have surgery and folfox?
  • polarprincess
    polarprincess Member Posts: 202 Member
    #5
    pamness said:

    Get another opinion from a major cancer center
    continuous 5FU with radiation for 5 days is standard. It does not need to be 24/7, that is a different protocol. However - it is usually combined with 8 weeks of Folfox and surgery.

    I did mine:

    surgery
    8 rounds folfox - Oxaliplatin, leukovorin (a vitamin mix, but I guess it helps) a bolus of 5FU with pump for 46 hours, every other week and then on to 28 days of radiation with continuous 5U (5 days per week ) so basically 6 weeks. It is my understanding that this is the current standard for 3A - I was 3A - 2 positive nodes. I am currently 1 year plus ned. I was treated at Mass General - a very major cancer center.

    yes i had surgery
    yes i had surgery, in fact my surgeons last name was chua...where is that phone number for?? i don't know if i would want her giving me recommendations for chemo though as she was very cold and professional and gave me statistics of 40-60% survival for stage IIIa which according to my oncs is way off. I have had 2 cycles of fulfox so far and i still don't know what the plan is yet for the rest. One day she is talking only 1 more, the next day 3 more. She even said the standard for colon cancer without radiation is 14!! Don't know where she got that info from! from what i have noticed most people with radiation get 8 cycles of fulfox and 28-30 days radiation. Glad to hear someone else got their pump disconnected.That made me panic a bit thinking i was the only one. Thanks so much
  • KathiM
    KathiM Member Posts: 8,028 Member
    #6
    It was over 3 years ago, but.....
    I had only 2 rounds of 5FU pump, hooked up Monday, removed Friday. During the day of that week, everyday, I also had an infusion of oxcillaplatin (or carboplatin...sorry, some jerk stole my records...). And 25 days of radiation.

    I then had surgery. Removed my rectum and sig colon. And a total hysterectomy. I had stage IIIA rectal cancer, with a 2 inch tumor in the first rectal fold. No cancer was found in any of the removed tissue.

    That said, if you are nervous, you need to ask. I had trust in my treatment team. You need to, too.

    I am cancer free, on both this cancer and breast cancer.

    Hugs, Kathi
  • ac
    ac Member Posts: 88 Member
    #7
    Chemoradiation therapy varies with individuals
    I am on pre-operative radiation 5 days a week and on Xeloda 5 days a week, I'm off on weekends.

    When I first got my prescription, I watched the video which said that the treatment schedule is usually 2 weeks followed by one week rest. I asked my oncologist about this and he mentioned that treatment really varies with individuals.

    I don't think you should worry about being off 5FU on weekends. But as everyone suggested, do speak with your oncologist if you have any doubts.

    Good luck!
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
    #8
    Mine was different
    I had the surgery and was diagnosed as Stage III but I'm not sure what letter was after that. After I healed from the surgery in January, I started the chemo (5FU/Leucovin/Oxipilatin) for 12 cycles. We actually stopped the Oxipilatin after 9 cycles because I was having such problems with it.

    In the middle of the 12 cycles, I had 6 weeks of daily radiation (Mon - Fri) and was taken off the infused chemo and put on oral (Capecitabine) pill form. My oncologist (who is in the picture with me and I adore her) said that the Capecitabine worked really well with the radiation, but was milder than the infused chemo I was on.

    So, I think it can really differ, depending on the person, their metabolism, height, weight, general health, length of treatments, etc.

    Hugggggs,

    Cheryl
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #9
    polarprincess said:

    yes i had surgery
    yes i had surgery, in fact my surgeons last name was chua...where is that phone number for?? i don't know if i would want her giving me recommendations for chemo though as she was very cold and professional and gave me statistics of 40-60% survival for stage IIIa which according to my oncs is way off. I have had 2 cycles of fulfox so far and i still don't know what the plan is yet for the rest. One day she is talking only 1 more, the next day 3 more. She even said the standard for colon cancer without radiation is 14!! Don't know where she got that info from! from what i have noticed most people with radiation get 8 cycles of fulfox and 28-30 days radiation. Glad to hear someone else got their pump disconnected.That made me panic a bit thinking i was the only one. Thanks so much

    This one is an Oncologist .......
    Sorry, probably shouldn't post numbers anymore, but this Chua is a man and an Oncologist...
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #10
    Hi, I didn't get the 5FU
    Hi, I didn't get the 5FU pump at all during my chemoradition. I had once a week infusions of Cisplatin while I was getting radiation. I had my chemo/radiation this past Feb-mid March. I've wondered about why mine was different than most i've heard. I actually never remembered to ask my Dr. later why mine was different. The only thing I can think of was that I already had lots of 5FU with my systemic chemo the prior 6 months. I had major chemo first (Folfox plus Avastin) due to mets in liver and lungs. I did well with that, then got to the point where they were ready to focus on my original rectal tumor.

    *The important thing- it did work- my rectal tumor (4 x 3 cm) completely disappeared & follow up biopsy of the former tumor site showed absolutely no sign of any cancer. I ended up not having the rectal surgery after all. Some Drs would still have removed that portion of my rectum, I was told. My surgeon decided not to because my tumor was so low that I had a very high chance of ending up w/ a permanent colostomy. At 42, she said she would just check me every 3 months. So, the plan is to see her for a rectal exam by scope every 6 months & inbetween get an ultrasound sigmoidoscopy (so I'll be checked in some way every three months). To throw a ringer in there, I'm showing lung activity again & am now on chemo again (Camptosar/Erbitx/Avastin this time). I am sooo relieved, though, that my most recent follow up scans still show nothing in my rectum.

    Best wishes to you-
    Lisa

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