How long onFulfuri

changing2
changing2 Member Posts: 118
edited March 2014 in Colorectal Cancer #1
Hi,
Just wondering if anyone on Fulfori (5FU, Leucavorin, Camptosar)for more than 12 treatments, if so how long? I failed the K-ras test but Fulfori seems to be keeping my CEA from rising any further (21) so MD wants to stay the course. Any info appreciated:)Thanks

Comments

  • msccolon
    msccolon Member Posts: 1,917 Member
    #2
    FOLFIRI
    I've done FOLFIRI and it's always been the same as FOLFOX, the 12 treatments, given every other week for 6 months. I think that's just standard for colon cancer chemo any way you look at it! The camptosar always does a good job of sending my CEA back down as well and is much better tolerated by my body than was the Oxaliplatin! Good luck and keep us posted on how things are going, ok?
    Mary
  • changing2
    changing2 Member Posts: 118
    #3
    msccolon said:

    FOLFIRI
    I've done FOLFIRI and it's always been the same as FOLFOX, the 12 treatments, given every other week for 6 months. I think that's just standard for colon cancer chemo any way you look at it! The camptosar always does a good job of sending my CEA back down as well and is much better tolerated by my body than was the Oxaliplatin! Good luck and keep us posted on how things are going, ok?
    Mary

    One more Question?
    Hi Mary,
    Thanks for responding:) It does appear that we've been getting the same treatments. Does this mean you've continued and gone beyond the 12 treatments of Fulfuri during the same routation (that's what my MD wants to do)OR that you've repeated the rotation with some type of break in betweeen? Thanks again for the info!
  • msccolon
    msccolon Member Posts: 1,917 Member
    #4
    changing2 said:

    One more Question?
    Hi Mary,
    Thanks for responding:) It does appear that we've been getting the same treatments. Does this mean you've continued and gone beyond the 12 treatments of Fulfuri during the same routation (that's what my MD wants to do)OR that you've repeated the rotation with some type of break in betweeen? Thanks again for the info!

    my treatments
    Initially diagnosed in 2004, did FOLFOX, had to quit Oxaliplatin after 3 treatments so completed the 6 months just with Leucovorin and 5FU. In 2006 I had a recurrence, surgery once more, 6 months of FOLFIRI + Avastin. I completed the 12 treatments, NED. In January of this year, my CEA had begun to rise again so I went back on FOLFIRI. This time I actually only completed 10 treatments, only because life got in the way and I wanted to be able to celebrate my daughter's 21st birthday and other things. My CEA had gone down after the 10 treatments so we didn't bother with the last 2 when my "break" was over. My last treatment was end of April and I have been continuing with Avastin every 3 weeks ever since. And note, when I finished the FOLFIRI in April of 2007, I continued with Avastin every 3 weeks until January of 2008, when I went back on the FOLFIRI.
    Mary
  • Kanort
    Kanort Member Posts: 1,272 Member
    #5
    My Friend, Barbara!
    While sitting with my friend, Barbara, in the infusion room yesterday, this exact question came up. It was Barbara's understanding that she would receive 12 rounds of Fulfuri which was the same number of Folfox treatments she was given when she was initially diagnosed with rectal cancer in 2006. However, she was informed that she would remain on Fulfuri until it either stopped working or started causing toxicity. My friend is also on a clinical trial (Hedgehog, I think). The clinical trial director said there was no dosage limitation on Fulfuri.

    I hope you are doing well.

    Hugs,

    Kay
  • changing2
    changing2 Member Posts: 118
    #6
    Kanort said:

    My Friend, Barbara!
    While sitting with my friend, Barbara, in the infusion room yesterday, this exact question came up. It was Barbara's understanding that she would receive 12 rounds of Fulfuri which was the same number of Folfox treatments she was given when she was initially diagnosed with rectal cancer in 2006. However, she was informed that she would remain on Fulfuri until it either stopped working or started causing toxicity. My friend is also on a clinical trial (Hedgehog, I think). The clinical trial director said there was no dosage limitation on Fulfuri.

    I hope you are doing well.

    Hugs,

    Kay

    Hi!
    Thanks to you both! Kay, your friend and I are in the same boat it seems. MD said she'd stop the Fulfuri when no longer effective and will then try Avastin with Xeloda again, I had blood clots with Avastin once. However not taking any treatment has it's own risks:) By the way, Mary, may I ask what your CEA is now and how far does it range?
  • msccolon
    msccolon Member Posts: 1,917 Member
    #7
    changing2 said:

    Hi!
    Thanks to you both! Kay, your friend and I are in the same boat it seems. MD said she'd stop the Fulfuri when no longer effective and will then try Avastin with Xeloda again, I had blood clots with Avastin once. However not taking any treatment has it's own risks:) By the way, Mary, may I ask what your CEA is now and how far does it range?

    CEA
    Well, it's never been below 5, hovers about 7-9, we start scanning at 11 and it's currently about 14. With my last recurrence it was around 27 so I don't get the large fluctuations that I've seen with some, but an increase seems to signal activity in me.
    Mary
  • Kanort
    Kanort Member Posts: 1,272 Member
    #8
    msccolon said:

    CEA
    Well, it's never been below 5, hovers about 7-9, we start scanning at 11 and it's currently about 14. With my last recurrence it was around 27 so I don't get the large fluctuations that I've seen with some, but an increase seems to signal activity in me.
    Mary

    Interesting!
    Barbara's oncologist informed her yesterday that he would no longer be taking her CEA while she was on chemo. He said that it has not been proven to be accurate while in treatment. She was surprised as was I.

    Hugs,

    Kay
  • changing2
    changing2 Member Posts: 118
    #9
    Thanks for responses!
    Mary...it's too funny .....you and I seem to run pretty much the same course! Thanks to both of you!
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
    #10
    Kanort said:

    Interesting!
    Barbara's oncologist informed her yesterday that he would no longer be taking her CEA while she was on chemo. He said that it has not been proven to be accurate while in treatment. She was surprised as was I.

    Hugs,

    Kay

    CEA while on treatment
    Kay... that doesn't surprise me that Barbara's oncologist thought that way. I was getting my CEA tested the whole time I was on chemo (every 3 months) and it always hovered around the 1.8 - 2.4 range, which anything under 4.0 is considered pretty normal.

    I finished my chemo at the end of Oct 2007... and my CEA was 2.4. I was tested again in December/07 and it was 6.7. I was scheduled to go to Hawaii the next month so my oncologist told me to go ahead and enjoy myself... we would re-test when I came back. Well, we did re-test in Feb/08 and it was 18. So that's when a PET scan was ordered... and the right adrenal gland lit up big time.

    Now, the interesting thing here was I had a growth on my right adrenal gland that I had had for at least 7 years. It was considered benign... and there was no reason to suspect otherwise. But at some point, the colon cancer DID spread to this growth... now was that after I finished chemo or had it been malignant for some time? No one knows but if there was cancer in it while I was on chemo, the CEA did not show any rise... it was only after we stopped the chemo that the CEA started rising.

    I had the right adrenal gland removed surgically June 30/08 and the CEA was tested just before the surgery... it was now a 30. Had the gland removed, healed and in August/08 had my CEA tested and it had plummeted to 1.5.

    So, it doesn't surprise me that some oncologists say they'll wait and not test for CEA while the patient is on chemo.

    Huggggggs,

    Cheryl
  • apache4
    apache4 Member Posts: 272 Member
    #11
    msccolon said:

    my treatments
    Initially diagnosed in 2004, did FOLFOX, had to quit Oxaliplatin after 3 treatments so completed the 6 months just with Leucovorin and 5FU. In 2006 I had a recurrence, surgery once more, 6 months of FOLFIRI + Avastin. I completed the 12 treatments, NED. In January of this year, my CEA had begun to rise again so I went back on FOLFIRI. This time I actually only completed 10 treatments, only because life got in the way and I wanted to be able to celebrate my daughter's 21st birthday and other things. My CEA had gone down after the 10 treatments so we didn't bother with the last 2 when my "break" was over. My last treatment was end of April and I have been continuing with Avastin every 3 weeks ever since. And note, when I finished the FOLFIRI in April of 2007, I continued with Avastin every 3 weeks until January of 2008, when I went back on the FOLFIRI.
    Mary

    Going back on treatments
    Just curious. I have never been given the option of going back on a previous treatment. Folfori did not work for me, but Folfox did for 16 rounds. Did Oxy about 1/2 that time. Went off the Folfox after a clear PET scan and when CEA rose to 23 they put me on the Folfori. After that, my horrible experience with Erbitux and CPT-11...then I opted to stop treatment which as in mid-August. Anyway, the only other thing is "maybe" a clinical trial, but I am not keen on that as I am now looking for quality of life. I don't know where my question is in there. Also, Mary, I believe you are the same person with the ortho problems?
    I have had pain in the top of my hip bone for about twomonths now that is puttingme totally "down" worse then anything I have ever had before. Had a total body bone scan which came out negative for bone cancer and will get MRI results next week. I have been on disability for arthritis, etc. for almost 5 years now. Do you have to take pain meds for the arthritis and if so how much. I am taking 2 pills every six hours around the clock as the pain is so bad it wakes me up. The pain pills are making me horribly constipated which I am trying to use Metamucil for. The pain is so bad that I have lost 5 lbs as I can hardly function long enough to do chores and also cook. I think I am just venting here. My onc sent me to the ortho guy. Oh! He said no more scans since I have opted out of treatments...Does that sound right to anyone?
    Sorry this is such a jumbled mess. ('am at Moffitt Cancer Center for the cancer...dx 6/06 Stage IV, non-operable numerous mets to liver)
  • msccolon
    msccolon Member Posts: 1,917 Member
    #12
    apache4 said:

    Going back on treatments
    Just curious. I have never been given the option of going back on a previous treatment. Folfori did not work for me, but Folfox did for 16 rounds. Did Oxy about 1/2 that time. Went off the Folfox after a clear PET scan and when CEA rose to 23 they put me on the Folfori. After that, my horrible experience with Erbitux and CPT-11...then I opted to stop treatment which as in mid-August. Anyway, the only other thing is "maybe" a clinical trial, but I am not keen on that as I am now looking for quality of life. I don't know where my question is in there. Also, Mary, I believe you are the same person with the ortho problems?
    I have had pain in the top of my hip bone for about twomonths now that is puttingme totally "down" worse then anything I have ever had before. Had a total body bone scan which came out negative for bone cancer and will get MRI results next week. I have been on disability for arthritis, etc. for almost 5 years now. Do you have to take pain meds for the arthritis and if so how much. I am taking 2 pills every six hours around the clock as the pain is so bad it wakes me up. The pain pills are making me horribly constipated which I am trying to use Metamucil for. The pain is so bad that I have lost 5 lbs as I can hardly function long enough to do chores and also cook. I think I am just venting here. My onc sent me to the ortho guy. Oh! He said no more scans since I have opted out of treatments...Does that sound right to anyone?
    Sorry this is such a jumbled mess. ('am at Moffitt Cancer Center for the cancer...dx 6/06 Stage IV, non-operable numerous mets to liver)

    pain issues
    I actually had X-rays and blood work done finally to see what the issues are. Turns out my knees have so much cartilage damage they are "basically bone on bone" according to my doc. I was a very obsessive cardio-walker in my younger days and hit the ground very hard to get the speed I wanted. Wasn't so bad when i was living in flat land areas, but when I moved up here, the hills really did me in. The chemo has made it worse, but probably more due to fluid issues. My hands are basically rubbing bone to bone as well. For now, I take Celebrex twice a day and have added a Voltaren gel (sure wish it were a cream instead of the messy gel). When it gets real bad I add acetaminophen. I also take MSM and Glucosamine and Chondroitin. Until I can't stand it and want knee replacements, this will be my routine. No more high impact exercising, which really isn't a problem. I like to knit and crochet and do so constantly when I'm not working, so my hands are more of an issue with me ... PCP says steroid shots into the joints can help sometimes; explains why my pain is the best when I am on chemo with the Decadron I take in combination with Emend for nausea!

    I don't ever have constipation issues, at least not since my diagnosis! More likely the opposite! Unfortunately, no weight loss issues either! LOL! Even though I am sure that would help on the knees, my weight is more an irritant than a causative; I was always either underweight or normal weight up until the last year and a half. My last two rounds of chemo since my recurrence in 2006 have really changed the landscape for me!

    I hope you are able to come to a truce of some kind with your pain. It must make it so much harder for you to deal with EVERYTHING! Pain gains our attention and makes everything difficult. I will continue praying for you.
    Mary

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