To Shayenne...about folfiri

snommintj
snommintj Member Posts: 601
edited March 2014 in Colorectal Cancer #1
Please do your own research on this matter, but I will say some things about folfiri. From what I've read, if you are going to respond to folfiri you will do so within the first 2-3 treatment or not at all. Also from what I gather, even if you do respond the benefits of Camptosar are only effective during the first 2-3 treatments. Like I said earlier, please read up on this stuff yourself. The info can be found on Camptosar(I think it's a Phizer product)'s website. Also read the summaries of the clinical trials. Ask your doctor. One of my best friends is currently struggling for her life because her oncologist kept her on folfiri hoping for something to happen. When I showed her the data she nearly lost her mind. She is currently responding well to folfox

Comments

  • Shayenne
    Shayenne Member Posts: 2,342
    #2
    Thanks so much!
    I will go to that site, I did ask my onc after just coming back from my 3rd treatment today, and I asked her "how will I know besides waiting on a scan, if this is actually working or not??" and she said "I can tell by looking at you, that it's working"...she then did her exam, (I was 152 lbs gaining weight, I am now 126 lbs) and she felt the sites, the belly, the lower portions, checked my neck for any swelling, and then grabbed me and held me with both arms and said "The tumors are shrinking, I can feel it"...which was kind of encouraging to me, if this wasn't working, I know they would switch to something else, because that's what they told me early on, I'm not sure what Camptosari is, but will check it out, I will be put on folfox for sure if they think I'm not responding. Thanks for that and huggsss to you!!

    ~Donna
  • lizbiz
    lizbiz Member Posts: 120
    #3
    Shayenne said:

    Thanks so much!
    I will go to that site, I did ask my onc after just coming back from my 3rd treatment today, and I asked her "how will I know besides waiting on a scan, if this is actually working or not??" and she said "I can tell by looking at you, that it's working"...she then did her exam, (I was 152 lbs gaining weight, I am now 126 lbs) and she felt the sites, the belly, the lower portions, checked my neck for any swelling, and then grabbed me and held me with both arms and said "The tumors are shrinking, I can feel it"...which was kind of encouraging to me, if this wasn't working, I know they would switch to something else, because that's what they told me early on, I'm not sure what Camptosari is, but will check it out, I will be put on folfox for sure if they think I'm not responding. Thanks for that and huggsss to you!!

    ~Donna

    What???
    I'm currently on FOLFIRI+Avastin and I've had 3 treatments. My scans indicate that my tumors are "stable", meaning that they have not grown and I have no new sites.

    Where did you read this information? Does this mean that I have no hope for future shrinkage??

    Elizabeth
  • Shayenne
    Shayenne Member Posts: 2,342
    #4
    lizbiz said:

    What???
    I'm currently on FOLFIRI+Avastin and I've had 3 treatments. My scans indicate that my tumors are "stable", meaning that they have not grown and I have no new sites.

    Where did you read this information? Does this mean that I have no hope for future shrinkage??

    Elizabeth

    No....
    There's always hope, I'm on the same as you, and just did my 3rd treatment, and my onc said she had gotten loads of good responses with it, and have sent alot of people to surgery when she thought at first they wouldn't be able too, and she also told me today she can tell and feel that the tumors are shrinking, and the chemo was working so far, I get my scan next month. I would ask my onc if there was no shrinkage early on, to switch me though, because I don't want to keep being on this if it wasn't doing anything, but for her to tell me it's working, it was quite encouraging..don't lose the hope and stay strong :)

    Hugssss~
    ~Donna
  • standbyme
    standbyme Member Posts: 41
    #5
    lizbiz said:

    What???
    I'm currently on FOLFIRI+Avastin and I've had 3 treatments. My scans indicate that my tumors are "stable", meaning that they have not grown and I have no new sites.

    Where did you read this information? Does this mean that I have no hope for future shrinkage??

    Elizabeth

    folfiri
    My husband is on folfiri with avastin for mets to lungs. After 3 treatments his lung nodules were stable, after 11 treatments they have shrunk with no new disease. I looked for the above mentioned info on folfiri and could not find anything like that.

    Judy
  • CherylHutch
    CherylHutch Member Posts: 1,375
    #6
    standbyme said:

    folfiri
    My husband is on folfiri with avastin for mets to lungs. After 3 treatments his lung nodules were stable, after 11 treatments they have shrunk with no new disease. I looked for the above mentioned info on folfiri and could not find anything like that.

    Judy

    Folfiri
    Thank you, Judy,

    I am not currently on any chemo. The last chemo was after my surgery where I was on FOLFOX for 12 treatments (although was taken off the Oxi after 9 due to toxicity issues). I finished the last of the treatments at the end of Oct 2007. In Dec my CEA was elevated... tried again at the beginning of Feb (I had gone on vacation for all of January as a celebration trip), and the CEA was elevated again. PET scan after that only to find the cancer had spread to the right adrenal gland and at least one lesion lit up in the young. CAT scan showed that I actually had 7 suspicious nodules in the lungs but they were so small, 6 of them didn't register on the PET scan.

    Fast forward... we kept an eye on them and I had the largest of the 7 ablated this past January... and we are keeping an eye on the other 6. 3 had not grown as of the last CAT scan in January... I'll be having another one at the end of next week (Mar 27).

    If they do not grow and remain stable, then great. If one or two start to grow, we will revisit lung ablations. If they all grow or new ones show up, then we will have to go the chemo route ... of which my oncologist did say we would not be doing the Oxi this next go round. It would be the FOLFIRI with avastin, with the intention to get shrink or stabilize the lung mets. At this time, I have no other mets anywhere in my body (yayaya).

    So I am really glad to hear someone who is on this treatment for the same reasons... and it's working! :)

    I, also, have not heard of the above as in relation to a particular kind of medication or chemo. Everyone reacts differently so whereas FOLFIRI and Avastin may work really well on the majority (depending on the condition/what is being treated)... there are always going to be those that don't react with as much success. In those cases, one hopes that another protocol is there for them to try and perhaps a different chemo/med will work for them, that wouldn't work for the average. Unfortunately, a lot of dosaging and which chemos to try all encompass a lot of trial and error.

    Of course, there will always be those whose progressive disease is resistant to chemo... and I guess that's my biggest fear. If the day will come where my lung mets are determined to be resistant to chemo, which is why the FOLFOX didn't get them in the first place (or the cells that created the lesions).

    Hugggggs,

    Cheryl
  • snommintj
    snommintj Member Posts: 601
    #7
    CherylHutch said:

    Folfiri
    Thank you, Judy,

    I am not currently on any chemo. The last chemo was after my surgery where I was on FOLFOX for 12 treatments (although was taken off the Oxi after 9 due to toxicity issues). I finished the last of the treatments at the end of Oct 2007. In Dec my CEA was elevated... tried again at the beginning of Feb (I had gone on vacation for all of January as a celebration trip), and the CEA was elevated again. PET scan after that only to find the cancer had spread to the right adrenal gland and at least one lesion lit up in the young. CAT scan showed that I actually had 7 suspicious nodules in the lungs but they were so small, 6 of them didn't register on the PET scan.

    Fast forward... we kept an eye on them and I had the largest of the 7 ablated this past January... and we are keeping an eye on the other 6. 3 had not grown as of the last CAT scan in January... I'll be having another one at the end of next week (Mar 27).

    If they do not grow and remain stable, then great. If one or two start to grow, we will revisit lung ablations. If they all grow or new ones show up, then we will have to go the chemo route ... of which my oncologist did say we would not be doing the Oxi this next go round. It would be the FOLFIRI with avastin, with the intention to get shrink or stabilize the lung mets. At this time, I have no other mets anywhere in my body (yayaya).

    So I am really glad to hear someone who is on this treatment for the same reasons... and it's working! :)

    I, also, have not heard of the above as in relation to a particular kind of medication or chemo. Everyone reacts differently so whereas FOLFIRI and Avastin may work really well on the majority (depending on the condition/what is being treated)... there are always going to be those that don't react with as much success. In those cases, one hopes that another protocol is there for them to try and perhaps a different chemo/med will work for them, that wouldn't work for the average. Unfortunately, a lot of dosaging and which chemos to try all encompass a lot of trial and error.

    Of course, there will always be those whose progressive disease is resistant to chemo... and I guess that's my biggest fear. If the day will come where my lung mets are determined to be resistant to chemo, which is why the FOLFOX didn't get them in the first place (or the cells that created the lesions).

    Hugggggs,

    Cheryl

    standbyme
    Congrats on the response to folfiri. I never said people didn't respond to it. The literature can be found simply by googling camptosar. Go directly to camptosars website. On the right hand side there is a link to some of their clinical trial results. Other literature can be found on the cancer.gov. You have to read the entire study. Not just the summaries. I'm not bashing folfiri, but I think everyone should read all about what they are taking. I did a quick check of the #'s. Of the 1000 or so enrolled in folfiri clinical trials there were a handful of complete responses. I am glad you guys had the same response!

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