Lifetime Chemo

flcajun1969
flcajun1969 Member Posts: 8
in Colorectal Cancer #1
Is anyone on, or has been on, the maintenance chemo plan of Avastin, 5FU, and Leucovorin? I was first diagnosed on 9/11/06, and then re-diagnosed 10/1/10. They just performed a PET scan a few weeks ago, and told me that with the current images combined with CEA numbers going up and down I will be on chemo every 2 weeks for the rest of my life. I am 41 years old, and just wondering what kind of side effects are occurring with this plan.

Comments

  • Sandi1
    Sandi1 Member Posts: 277
    #2
    My husband is on maintenance chemo
    my husband is on that plan of chemo. he was diagnosed in 2008; he has had one re-occurance and the onc decided to keep him on this chemo for the rest of his life. he is on every three weeks - has been doing that for the last year. The only side effects that he has are tiredness and metal taste in his mouth. He is on from Tuesday to Thursday and by Saturday he is his old self again.

    Send me a private message if you have any questions.

    Sandi
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    #3
    Sandi1 said:

    My husband is on maintenance chemo
    my husband is on that plan of chemo. he was diagnosed in 2008; he has had one re-occurance and the onc decided to keep him on this chemo for the rest of his life. he is on every three weeks - has been doing that for the last year. The only side effects that he has are tiredness and metal taste in his mouth. He is on from Tuesday to Thursday and by Saturday he is his old self again.

    Send me a private message if you have any questions.

    Sandi

    Does he get breaks
    Does he get breaks inbetween....say for even six months or so???
  • Love2Cats
    Love2Cats Member Posts: 127
    #4
    Me 5FU +oxy+leuk and just quit Avastin
    Hi, I am not on maintenance, I just completed my 5th ever chemo treatment (started in Jan 2011). I had the same drugs as you every 2 weeks, but this last chemo they dropped the Avastin due to some very serious blood clots I developed. Please be sure to watch for signs of blood clots while you are on the Avastin like swelling, and veins appearing at the surface of your skin. Of course I am no doctor, so please read or ask your doctor about the possible risks. I think I am tough, so I delayed in going to the doctor, and boy did that cause me a lot of pain. Please take care of yourself.

    Sandy
  • gerryo
    gerryo Member Posts: 50
    #5
    My husband is also on for
    My husband is also on for the rest of his life. We just started, but he will have to go every 2 weeks. I know it is not great, but I feel it is a small price to pay to have him here with us.

    Gerryo
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    #6
    gerryo said:

    My husband is also on for
    My husband is also on for the rest of his life. We just started, but he will have to go every 2 weeks. I know it is not great, but I feel it is a small price to pay to have him here with us.

    Gerryo

    I was... am...kind of
    Is the 5FU a bolus? Thats what I have been getting for 5 months now. I would get Leuco and the 5FU bolus every week.... for 3 weeks straight...then off a week. The Avastin I got on week 1 and 3. The Avastin was stopped about 8 weeks ago due to healing issues I was having with sores in my nose.... NOW healed.... however, I have felt so much better not being on the Avastin that I said no more. I had to see a vascular surgeon for veins that are knotted and protruding in right leg. The valve in vein in groin area has stopped functioning and that vein now has to be surgically removed. Normally they would do a lasar type surgery on this but cannot be done in groin area..... I can't say this is attributed to Avastin because I have had vein issues since 8th grade... they just never hurt till now. So..who knows??? I am NED at the present time but Onc still wants me to stay on 5FU and Leuco.... Still not sure what I am going to do since I feel that drug combo is more for "treating" and I have nothing to treat.... Avastin was a preventative so I can see that but still.... just not sure yet. you take care.

    Jennie
  • momma g
    momma g Member Posts: 6
    #7
    My husband was diagnosed
    My husband was diagnosed 6/09 with stage 4 rectal cancer, now in his liver and lungs. He had many setbacks with infections and blockages in the first 6 months, yet has been handling "lifetime chemo" for 15 months. He's on his second line of treatment-- off the oxi due to neuropathy, with the same treatment of 5FU, Avastin and Leucovorin every 2 weeks. He usually feels as he describes as "hung over and lack of appetite" for the first 4 days, and then continues to gain his strength with each day. From what I can judge, as long as he takes his medications, the major symptons are controlled-- not easily but controlled. He also watches what he eats before chemo and after because he has an ostomy. I hope this helps, after 2 years we have embraced our new "normal" because without chemo = would not be good. Wishing you much strength and spirit in the days ahead.
  • thxmiker
    thxmiker Member Posts: 1,278 Member
    #8
    second opinion
    I would consider a second opinion.

    5-FU is normally for 6 months or 12 treatments. Ocasionally it is used for longer in later stages of cancer. There is also a pill form but most insurances do not cover the pill form. (Also with the pill form there is no recovery period.) The CEA does go up and down due to diet and where you are at during the chemo treatment. I was diagnosed 9/2007 and again 6/2010, I just finished chemo treatment 4/2011. My CEA finally 3.2.

    We spoke to 6 Oncs before we chose ours. Yes, mistakes were made during the process. At the same time we still felt he was giving us the best information. The other Onc that we really trusted said he may or may not have started us off the same way. He said it was a real difficult decision on which way to go with the treatment. We also had some Oncs that said some really stupid stuff to us. I told one do not even think of billing insurance unless you want to see me in court. She had that little information about colon cancer.

    Best Always, mike
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #9
    thxmiker said:

    second opinion
    I would consider a second opinion.

    5-FU is normally for 6 months or 12 treatments. Ocasionally it is used for longer in later stages of cancer. There is also a pill form but most insurances do not cover the pill form. (Also with the pill form there is no recovery period.) The CEA does go up and down due to diet and where you are at during the chemo treatment. I was diagnosed 9/2007 and again 6/2010, I just finished chemo treatment 4/2011. My CEA finally 3.2.

    We spoke to 6 Oncs before we chose ours. Yes, mistakes were made during the process. At the same time we still felt he was giving us the best information. The other Onc that we really trusted said he may or may not have started us off the same way. He said it was a real difficult decision on which way to go with the treatment. We also had some Oncs that said some really stupid stuff to us. I told one do not even think of billing insurance unless you want to see me in court. She had that little information about colon cancer.

    Best Always, mike

    Actually Mike
    I've been on the pill form Xeloda for over a year now with the exception of a two month break, one month before surgery and one month after. Even now with my CEA at 2.4 I'm still on Xeloda and Avastin and may be for a long time to come. I have two weeks on Xeloda and one week off, and Avastin every three weeks. Unfortunately my co-pay is 482.00 every three weeks for the Xeloda, insurance takes care of about 1600.00 of it.
    Winter Marie

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