Folfox odyssey starts tomorrow, questions

lauragb
lauragb Member Posts: 370 Member
in Colorectal Cancer #1
Well, as some of you know, I had received conflicting info about whether I needed chemo or not. Between second opinions and the responses from here and the Colon Club, I have decided to go through with it and start Folfox tomorrow. I was offered it or Xelox and am starting the Folfox first because the dosage of Oxaliplatin is less at each treatment. We'll see how it goes. Anyway, I have a couple of questions. (To start, I'm sure I'll have more and I have been reading back through old threads for guidance).

1. With the cold sensitivity, will I be able to walk with my dogs in the woods? If so, will my feet give me problems? and how should I bundle up?

2. How long do the cold sensitivity issues last with each cycle? (including touching items as well as eating and drinking)

3. What kinds of foods did you eat while having cold sensitivity? I'm having a hard time picturing getting enough to eat. Too skinny already.

4. Did you need neulasta? I'm not taking it for my first treatment but my white count is already low from radiation. It has never rebounded:/

Anyway, that's the start of my questions, I'll try not to drive everyone nuts with redundant questions.
Thanks a bunch in advance.
Laura

Comments

  • tommycat
    tommycat Member Posts: 790 Member
    #2
    Hi again
    Using your outline, here was my experience in 2009/2010.
    Number 2, then #1: Immediately following treatment, the eating/drinking cold-feeling part only lasted a couple days, and improved each day. I would drink room temperature Gatorade to keep hydrated, and enjoyed the taste while having trtmt. I would sleep with socks and mittens on, and keep mittens by the refrigerator to use when I reached in.
    Walking with your dogs can only help the circulation get going and you can double up on the socks.
    #3. I too am on the thin side but found myself enjoying the comfort of food. Friends had set up a meal train and it was extremely helpful to me and my family. Maybe you have a friend who can set this up for you? Mine was through Lotsa Helping Hands, but there is one called Meal Train too.
    #4. Neulasta...yes...at first during the hospital infusion time, then toward the end, self-injecting twice daily at home. It wasn't fun, but I kept reminding myself "Months for Years," meaning I could anything for awhile in order to have my life ahead of me for years.
    Btw, Do you have a temporary ilestomy? Keep in mind that the Folfox is going to make you have to "go" so be prepared.
    Hope this helps :)
    I am here for you~
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #3
    Hi Laura
    Hi Laura

    TC has some great ideas there and good info.

    I think with regards to question #1 - you will know:)

    For #2, this varies person to person...my experience was generally 7-8 days out and this was generally for the cold with liquids...my hands hurt any time that were exposed to cold, cool, or even room temp water...like sticking your finger in a light socket, ouch!

    One day during one of my oxy infusions, I noticed an extra bag on the tree and got up to read it...it was called MAGNESIUM SULFATE...the nurses called it "The Mags."

    For me, it turned my world over and helped me tremendously...literally I could walk out of infusion and have a cold drink or a drink with ice in it...it was amazing...my fingers were still sensitive to the touch, but my throat no longer hurt.

    I will say that it does not work for everyone...alot of oncs dismiss it, because they say it does not work...but you would know after the first infusion....or the 2nd tops...if you did not see some sort of noticable difference, you would know that it's not working...and won't work.

    But if it works for you, Laura...it will put some 'humaness' back in your treatment and give you a feel of control that you are not having to concede every aspect of your life? It's certainly worth a try...there won't be anything to lose.

    I was having an infusion on my b'day that year....and that day I had received the mags...I wanted a margarita that day...I had to wrap napkins around the glass to be able to hold it, but I could "sip that frozen concoction that helps you hang on..."

    LOL!

    For #3, I can't remember what I ate...at leaset not now.

    For #4, they did do a neulasta shot on me....looking back my treatment was not on par with the care I'm receiving today....so it's hard to know if it should have been more.

    My problem with Oxy was it battered my platelet count and compromised my immune system to such a degree that I can still barely stay in the 70's even to this day.

    For that reason, my oxy treatments were stagnated and eventually discontinued.

    Now with Folfiri, my platelet counts took a hit but not as drastic (diff drug reactions) and my white counts were always low - still are today many months out of last treatment.

    So, I got a neulasta shot after each infusion cycle.

    You might ask your onc about this - it might apply to Folfox as well.

    This was for Folfiri, but could be for Oxy as I said.

    I did infusions on Wednesday's...took the pump for 46-hours...unhooked on Friday...and then they had me wait "24 hours" and come in and get the neulasta shot.

    Something about it working better if you waited that period of time. I have also read that you can have it immediately done after infusion - because drive and distance is a factor.

    You can discuss with onc.

    Thanks for your post on my post....

    -Craig
  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #4
    Hi Laura-
    I would add that neuropathy could be a problem with this chemo, and you might want to ask your doc about taking glutamine powder to ward it off. That was standard practice for patients in chemo where I was treated (I couldn't manage it, too sludgy for me, so ended up with neuropathy, but you might have better luck with it-a lot of folks do). And just FYI, when my white counts went down I used an Indian herbal remedy on the advice of my naturopath, brought my counts up fairly quickly. If you're interested in this route, let me know and I'll ask her for the name of it-not surprisingly, can't pull it out of my "chemo brain"! Good luck tomorrow-Ann
  • lauragb
    lauragb Member Posts: 370 Member
    #5
    annalexandria said:

    Hi Laura-
    I would add that neuropathy could be a problem with this chemo, and you might want to ask your doc about taking glutamine powder to ward it off. That was standard practice for patients in chemo where I was treated (I couldn't manage it, too sludgy for me, so ended up with neuropathy, but you might have better luck with it-a lot of folks do). And just FYI, when my white counts went down I used an Indian herbal remedy on the advice of my naturopath, brought my counts up fairly quickly. If you're interested in this route, let me know and I'll ask her for the name of it-not surprisingly, can't pull it out of my "chemo brain"! Good luck tomorrow-Ann

    Thanks! I am interested in
    Thanks! I am interested in knowing the name of the indian herbal remedy. Also, where can I get glutamine powder?

    And to everyone, thanks for the suggestions and support. I feel so good finally recuping form surgery. It's hard to go get myself knocked back down again. I appreciate any suggestions of supplements to help get through it. While my oncologist didn't suggest any, he seems open to me taking things as long as they aren't contraindicated for use with the chemo.
  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #6
    lauragb said:

    Thanks! I am interested in
    Thanks! I am interested in knowing the name of the indian herbal remedy. Also, where can I get glutamine powder?

    And to everyone, thanks for the suggestions and support. I feel so good finally recuping form surgery. It's hard to go get myself knocked back down again. I appreciate any suggestions of supplements to help get through it. While my oncologist didn't suggest any, he seems open to me taking things as long as they aren't contraindicated for use with the chemo.

    Any supplement/vitamin store
    should carry the glutamine. My doc had me drinking 10 mg 3x per day. As I said, sludgy! but there are studies that show it really helps with the neuropathy. The WBC remedy is called Ashwaghanda (you can see why it was hard to remember)-my naturopath says to take 500 mg 3x per day. Let us know how tomorrow goes-Ann
  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #7
    Hope today went well-
    thinking of you as you start this stage of your journey. Ann
  • Kenny H.
    Kenny H. Member Posts: 502 Member
    #8
    annalexandria said:

    Hope today went well-
    thinking of you as you start this stage of your journey. Ann

    x2 on the nueropathy, my
    x2 on the nueropathy, my last folfox treatment (12th) was last april and still have numb hands and feet.
  • lauragb
    lauragb Member Posts: 370 Member
    #9
    annalexandria said:

    Any supplement/vitamin store
    should carry the glutamine. My doc had me drinking 10 mg 3x per day. As I said, sludgy! but there are studies that show it really helps with the neuropathy. The WBC remedy is called Ashwaghanda (you can see why it was hard to remember)-my naturopath says to take 500 mg 3x per day. Let us know how tomorrow goes-Ann

    Thanks and update
    My first treatment went fine. I was premedicated with magnesium sulfate, Aloxi, and Dexamethasone, then post treated with magnesium and calcium. I did feel strange most of the evening. I was home from by 2:30 yesterday afternoon, got a little nausea in the evening and have a little today. I'm not having issues with touching cold yet but I have gloves and a lot of outdoor gear ready just in case for as time goes on and effects accumulate. I did have the first bite jaw pain within a few hours of the infusion which I wasn't thinking about when I bit into a cheezit. I even get it on first drinks sometimes with Gatorade. I have a new friend here in town who just finished his 9th treatment of Folfox for Colon Cancer. He told me he usually crashes for a few days after the steroid wears off. I'm already tired today. I was able to sleep last night with some help from Melatonin and a little bit of Valium. That's it so far. We'll see how the next few days go.
    Thanks to everyone for your continued support.
    Sending light and love,
    Laura
  • westie66
    westie66 Member Posts: 642
    #10
    Kenny H. said:

    x2 on the nueropathy, my
    x2 on the nueropathy, my last folfox treatment (12th) was last april and still have numb hands and feet.

    Folfox treatments
    Hi: I did 12 treatments of folfox combined with folfiri, i.e. oxaliplatin + irenotecan + 5FU pump for 42 hrs. I had a nasty reaction to the oxaliplatin right at the first treatment (first bite pain, cold sensitivity, shakes) so my oncologist reduced the amount and infusion of it for the rest of the treatments. For the cold sensitivity and neuropathy, I took: L-Glutamine Fermented (5mg per day in juice), alpha lipoic acid tablets 3 times a day, calcium/magnesium supplement once a day (in Ontario they will give an infusion of this with the folfox treatment), and Vit b6 once a day. As soon as I started these supplements, I never had cold sensitivity or neuropathy again; in fact, I could drink ice cold water right after treatment. So, whether it was the supplements or the reduction in the oxaliplatin...?
    I also had Neulasta injections 24 hrs after the 5FU pump was taken off so my white cell counts did not get low (as they did when I was doing the cisplatin/gemcitibine chemo). I was lucky my medical plan covered these injections as in Canada they are $2500/injection! But my plan did not cover the oxaliplatin which cost that much too.
    My biggest problem with folfix and folfiri treatments was severe diarrhea (lasted for 3-5 days) and fatigue (ditto).
    Hope it goes well for you!
    Cheryl
  • lauragb
    lauragb Member Posts: 370 Member
    #11
    westie66 said:

    Folfox treatments
    Hi: I did 12 treatments of folfox combined with folfiri, i.e. oxaliplatin + irenotecan + 5FU pump for 42 hrs. I had a nasty reaction to the oxaliplatin right at the first treatment (first bite pain, cold sensitivity, shakes) so my oncologist reduced the amount and infusion of it for the rest of the treatments. For the cold sensitivity and neuropathy, I took: L-Glutamine Fermented (5mg per day in juice), alpha lipoic acid tablets 3 times a day, calcium/magnesium supplement once a day (in Ontario they will give an infusion of this with the folfox treatment), and Vit b6 once a day. As soon as I started these supplements, I never had cold sensitivity or neuropathy again; in fact, I could drink ice cold water right after treatment. So, whether it was the supplements or the reduction in the oxaliplatin...?
    I also had Neulasta injections 24 hrs after the 5FU pump was taken off so my white cell counts did not get low (as they did when I was doing the cisplatin/gemcitibine chemo). I was lucky my medical plan covered these injections as in Canada they are $2500/injection! But my plan did not cover the oxaliplatin which cost that much too.
    My biggest problem with folfix and folfiri treatments was severe diarrhea (lasted for 3-5 days) and fatigue (ditto).
    Hope it goes well for you!
    Cheryl

    Thanks for the tips. I
    Thanks for the tips. I appreciate this input so much, trying to do what I can to alleviate the potential unpleasant effects of this chemo........

    Sending light.
    Laura
  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #12
    lauragb said:

    Thanks for the tips. I
    Thanks for the tips. I appreciate this input so much, trying to do what I can to alleviate the potential unpleasant effects of this chemo........

    Sending light.
    Laura

    Watch out for dehydration!
    Especially if you're having trouble drinking. If you start feeling too dehydrated, you can usually go into where you get your infusions and get IV hydration. I didn't know that in advance and got incredibly sick before finally landing in the ER for treatment. Being proactive would have made for a bit less suffering. And when the nausea got bad , a very experienced onc nurse suggested I try Ativan (2 mg 3x oer day), and that was by far the best medication, for me at least. A lot more effective than the "gold standard", $60 per pill stuff I was on, and a lot cheaper!
  • westie66
    westie66 Member Posts: 642
    #13
    westie66 said:

    Folfox treatments
    Hi: I did 12 treatments of folfox combined with folfiri, i.e. oxaliplatin + irenotecan + 5FU pump for 42 hrs. I had a nasty reaction to the oxaliplatin right at the first treatment (first bite pain, cold sensitivity, shakes) so my oncologist reduced the amount and infusion of it for the rest of the treatments. For the cold sensitivity and neuropathy, I took: L-Glutamine Fermented (5mg per day in juice), alpha lipoic acid tablets 3 times a day, calcium/magnesium supplement once a day (in Ontario they will give an infusion of this with the folfox treatment), and Vit b6 once a day. As soon as I started these supplements, I never had cold sensitivity or neuropathy again; in fact, I could drink ice cold water right after treatment. So, whether it was the supplements or the reduction in the oxaliplatin...?
    I also had Neulasta injections 24 hrs after the 5FU pump was taken off so my white cell counts did not get low (as they did when I was doing the cisplatin/gemcitibine chemo). I was lucky my medical plan covered these injections as in Canada they are $2500/injection! But my plan did not cover the oxaliplatin which cost that much too.
    My biggest problem with folfix and folfiri treatments was severe diarrhea (lasted for 3-5 days) and fatigue (ditto).
    Hope it goes well for you!
    Cheryl

    L-Glutamine
    That should be 5 grams (it is a powder) not 5 mg.
    Cheryl

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