please please help- sad news

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oneagleswings
oneagleswings Member Posts: 425 Member
edited March 2014 in Colorectal Cancer #1
Hello everyone- my love just went for his post chemo check-up for stage 111 after 7 months of 5-FU and leucovorin and was told he is now stage 1V..there are 6 growths on his liver based on an ultrasound (what the hell was the use of 5-FU) he is scheduled for a CAT (his first one) to see if there is a spread elsewhere..and in a brief discussion with the onc he says the first line of treatment is FOLFIRI but could also be FOLFOX except here in Canada oxaliplatin is not a covered medication so we will have to pay probably thousands per month (also as Andreae says..avastin has not yet been approved here either and I understand that to get it here from the US is about $50,000 per year...so...my question to all you Stage 1v survivors is...what type of chemo have you been on- how was it administered...what were the side effects..how long were you on for...and how long after treatment (if you are finished) have you been NED?
I want us to make the correct chemo choice and really really appreciate all your input.
Thank you so much.
Bev

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  • markatger
    markatger Member Posts: 314
    #2
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    Hi Bev,

    So sorry to hear your sad news. I was diagnosed stage IV in February this year - rectal cancer with 2 liver mets (largest 3.8 cm). I recieved 2 months(4 treatments) of 5-FU, Oxaliplatin, Leucovorin and Avastin. The large liver tumor shrunk in half to 1.9 cm. I then had 6 weeks of radiation to the rectal tumor and 5 FU systemically. Scan last week showed the liver tumor has grown back to 2.4 cm. So either the liver tumor grew that much in the one month that I have been off treatment or it was completely resistant to 5 FU alone. I am having surgery to remove rectal and liver tumors in early Sept, then will be back on all of the chemo treatments including Oxaliplaitin and Avastin. I hope it will work the second time around on any residual cancer I may have in me.

    So I guess I am pro-Avastin because it seemed to really work on my tumor, but everyone's body is different unfortunately. I don't have any experience with FOLFIRI. It is very strange to me that Avastin and Oxaliplatin are not covered in Canada and the UK. I wish I knew more about how to deal with that situation. It seems like there has got to be a way around it other than having to pay for those drugs out of pocket.

    Has anyone mentioned Radio-Frequency ablation for the liver mets? Is that offered in Canada? Or hepatic pump for chemo?

    My thought and prayer are with you both in this very difficult time,

    Maria
  • eweb
    eweb Member Posts: 14
    #3
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    Dear Bev,
    I'm so sorry to hear about the spread. I don't know which province you are in, but I believe that oxaliplatin has been approved federally, but not all provinces may have approved its use on the provincial level. I would suggest you investigate clinical trials. The Canadian Cancer Society has a booklet that gives you websites where you can check for clinical trials in Canada and the U.S. You can also call them and get the info over the phone. Also, if there is another cancer centre where or near to where you live, you might want to get a second opinion. If oxaliplatin is not available in your province, you may be able to put up a pretty good fight to get your province to pay for treatment outside the province. You never know...
    Hope this helps,
    Ellen
  • HisJoy
    HisJoy Member Posts: 113
    #4
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    12 treatments of FOLFOX plus Avastin over a 7-8 month period. Should have taken 6 months, but my liver is a mess and won't handle the every-2-week cycle. After I finish the FOLFOX with Avastin, then I will continue on Avastin alone for another year.

    Oxaliplatin is VERY expensive - well, I guess none of it is cheap. Your onc may change regimens, though since 5-FU didn't keep the cancer in check. Hang in there!
    Best wishes!
    BB
  • StacyGleaso
    StacyGleaso Member Posts: 1,233 Member
    #5
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    Hi Bev,

    I am sorry that there is yet another layer of dealing with all of this. I was stage 4, as mine also spread to my liver. I've been clear since Jan 22, 2002, diagnosed Oct 2, 2001. I had a liver resection. Is that an option for your hubby? I had 6 months of clean up chemo after the surgery, and that consisted of Camptosar (sp?), 5 FU, and levorican (sp?). I had a CT scan within the last 2 weeks, and am still clear. What I would suggest, and these are just my thoughts, is to contact scouty (Lisa) and 2bhealed (emily) our star nutrition experts who may be able to steer you towards foods and vitamins which may pick up where the chemo is unable to reach. Does that make sense?

    I realize everything is overwhelming for you, but please make sure your own health does not get jeopardized in the process.

    Please keep me posted,

    Stacy
  • cheil
    cheil Member Posts: 28
    #6
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    hi, sorry to hear of your news, I am also stageIV just diagnosed, with 5 tumors in my lungs, I started FOLFOX last week, and am having to pay for avastin starting next week, £1600 UK, per cycle. not sure of prognosis yet until I get a scan after 2 more chemos, but will keep you updated on side effeects if you like, thanks, Jim.
  • mikew42
    mikew42 Member Posts: 114 Member
    #7
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    Bev,

    Sorry to hear your news. I am/was a Stage 4 with mets to the liver. Was put on the FOLFIRI with Avastin. After two months (8 treatments) largest liver tumor shrunk by half. After 5 months PET scan showed no metabolic uptake of the tumor. Stayed on regime for 7 months with RFA at end to make sure mets were dead. Have been NED since October 2004. Side effects were minimal. Chemo administered on Friday for 4 hours, felt kind of sick that evening, but by Monday was back at work. Hope this helps. Mike

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