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Freezing during chemo and questions

kaynotrealname
kaynotrealname Member Posts: 346

So I had my first chemo today and iced my hand and feet and used a cold cap. It was brutal. The ice cap was actually quite tolerable. So tolerable that it makes me wonder if it worked. But my hair was frozen when I took it off so I hope that was a good sign. My hands and feet though were not even a bit tolerable. I broke out in chills despite having three blankets on me and had to stay that way for an hour and a half. Does anyone know of anything that helps? My nurse suggested taking tylenol before the session. Plus does being that cold affect how chemo works in your body? After all I only want to save the cells and nerves in my hands, feet, and head. The rest it can kill off as long as it takes whatever cancer cells might be roaming around with them.

Comments

  • parakeetsrule
    parakeetsrule Member Posts: 605

    For what it's worth, most women go through chemo and come out the other side without nerve damage. And their hair grows back. So if you are torturing yourself into misery and don't want to do it, maybe consider stopping? Chemo is bad enough. I can't imagine doing all the icing and cold capping too!

  • kaynotrealname
    kaynotrealname Member Posts: 346

    The hair wasn't so bad but the hands and feet were pretty awful. I am going to have to rethink what I do next time that's for sure. I want to avoid side effects as much as possible but I don't like feeling tortured that's for sure.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534

    I iced my hands and feet during Taxol. I had some neuropathy in my feet begin near the end, but that went away after Taxol ended.

    Maybe you could ease up on icing a bit. For my hands I only used a partially frozen water bottle that I used for drinking. I didn't keep my hands and feet on ice 100% of the time, and I would move which part was on ice.

    I also used a wool blanket scarf.

  • kaynotrealname
    kaynotrealname Member Posts: 346

    Thanks for that advice. I think I will start with three blankets next time and let them know to get me heating pads immediately. Might help stave it off a little. And then take a few breaks if I still need to. I didn't even get the feet that cold until probably about 15 minutes into treatment but when they got cold, it was incredibly difficult. Will have to figure out a way forward while still trying to come out of this unscathed as much as possible. Luckily one session down and three more to go. That's what I keep telling myself.

  • ratherbesailing
    ratherbesailing Member Posts: 117

    kaynotrealname - You don't say what chemo you are currently going through. For instance, on an AC-T protocol, the adriamycin and cyclophosphamide will certainly cause hair loss, prompting many women like you to opt for the cold cap. But those two drugs do not typically cause peripheral neuropathy. And, as parakeets rule points out, the neuropathy some experience with taxol often abates with time.

    AC can, infrequently, cause hand and foot syndrome, resulting in blisters. But it is rare, and if you did develop it you could ice the hands and feet on subsequent sessions. Also, not certain, but I believe to get full benefit you need to have feet and hands cold before they infuse the chemo.

    Have you discussed icing with your oncologist, to get their recommendation? Just hate to see you suffer unless you know it's necessary. Your doctor should be your best source of reliable info. Hope it gets better for you!

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534

    I had 12 Taxol infusions. I doubt I had my hands and feet fully cold before chemo started each time. I did not find icing tortuous. Since she's cold capping with 4 infusions, I assumed Taxotere that has a small risk of permanent hair loss.

    ETA - Cold capping doesn’t work well against Adriamycin.

  • sarahmaude
    sarahmaude Member Posts: 326

    I'm not sure how you iced your hands and feet, but my facility provided wash basins with plastic bags of small ice cubes above and below my hands and feet. They covered the bags of ice with disposable pillow cases. The first treatment I tried just putting my bare feet and hands between the covered bags, and it was awful. I had a pair of thick athletic socks and put those back on my feet that first day and it helped. The remaining treatments I put the same kind of socks on my hands as well. You could also use knit mittens or gloves. When I started to feel too cold I took them out for a break. I only iced hands and feet while the Taxotere was being infused. The protocol I followed was what my doctor ordered.

    I wore a flannel shirt, sweater vest and actual sweat pants each treatment, and at hands and feeticing time asked for a warm blanket which I covered with a quilt I brought with me. Our chairs were heated as well I think having my body warm was a big help distractme from my cold hands and feet.

    I'm 5 weeks post final chemo and have had no neuropathy.

    I also cold capped with Penguin cold caps and kept a lot of my hair. I'm very grateful that we know how helpful icing can be. Cancer treatment is hard. For me, anything I could do to avoid permanent hair loss or neuropathy was well worth that relatively short time of being ridiculously cold.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534

    I did the same. When my hands or feet felt uncomfortably cold, I took them off ice. I also wore a flannel shirt, jeans, and a scarf in the summer. Though I don’t remember heated seats.

    Glad you don’t have CIPN.

  • kaynotrealname
    kaynotrealname Member Posts: 346

    Sorry about not putting down my chemo but it is Taxotere and cytoxan. And yes my oncologist was the one to suggest the hands and feet. In fact it's protocol there unless the patient refuses to do so. And I wouldn't have bothered with cold capping if I was having AC&T because it's not all that successful. But I've read there's a good shot with taxotere and cytoxan so that's why I'm doing it. And as Sarah said, despite the extreme discomfort, it's still worth doing if I can avoid side effects. I'm even fasting. Or was. Started eating again tonight and it was wonderful. But anything I can do to try and help with the discomfort is worth trying also so thank you for all the suggestions.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534

    Fasting during chemo is good. I believe it reduced the side effects so much that I didn't need to take additional meds at home.

    Hope your remaining treatments go smoothly.

  • kaynotrealname
    kaynotrealname Member Posts: 346

    Thank you and so far so good. In fact so good that I'm wondering if the chemo is even being effective. On day three and woke up today after for once some sleep (steroids have been brutal there but last night I was so tired that even though I woke up a lot I was able to go right back to sleep). A little achy probably related to my bone shot last night and my stomach isn't exactly right but it's not nauseous and I was able to eat a good breakfast. Energy is pretty good and if I still feel this good this evening I'm probably going for a walk. After getting some icecream, my first purposeful sugar treat since diagnosis! So all in all very very pleased and hope it keeps up. Am just taking the minimum they ask me to because like you I'd like to avoid any extra so as to effect my blood counts as little as possible. Steroids ended this morning and my last prescribed nausea pill is this evening. So we'll see what tomorrow brings. But I think it's probably the fasting. It really does help if you can manage to do it.

  • tsquare
    tsquare Member Posts: 19

    @serenitystat @kaynotrealname, good to know it has been going well for you. I would like to know more on how did you go about fasting? Was it before, during or after the chemo session? What about the need to drink lots of water?

  • mimmin
    mimmin Member Posts: 3

    hello! Don’t want to start a new topic, but I’m very worried about my hands after chemo, I’m a professional musician (flute player) and any nerve damage in my hands would end my music career… I’m starting chemo next week with Taxotere, Carboplatin and also targeted therapy: herceptin & Perjeta.

    I saw the oncologist yesterday, but as it was all so new to me, I just realised this could be a big deal for me. Would icing my hands during chemo help for this regiment?

    Thank you all in advance!
  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534

    kaynotrealname - You're doing great! When I started losing too much weight, I had milkshakes. 😋

    tsquare - You start your fast before chemo and don't eat again until after. For AC, I fasted ~2 1/2 days before chemo until 24 hours after chemo ended. It's a no calorie fast (no diet drinks). Drink lots of water. I lost the taste for coffee, but that's allowed. Black and herbal teas are ok, but green or white tea is very limited during chemo (too many antioxidants). There are some who did a fast mimicking diet, but it was easier for me to fast. Santabarbarian posted most on FMD.

    mimmin - It is worth trying. It's the Taxotere with the neuropathy risk. Check what your facility has before buying anything.

    Best wishes to all of you on your treatments.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534

    tsquare - I bumped up a thread on fasting during chemo for you.

  • kaynotrealname
    kaynotrealname Member Posts: 346

    Serenity gave you an excellent description of what she did to fast but I did it a little different so I'll tell you about that. I did use a fasting mimicking diet because I didn't want to take my steroids on an empty stomach. Anyway I fasted 24 hours before chemo, the day of chemo, and 24 hours after chemo. It is said to help with side effects and possibly increase the rate of chemo effectiveness. By fasting mimicking you are allowed a certain amount of calories a day but they need to be from a certain type of food and limited. I limited mine to 400 or less per day and bought fasting bars from an on-line site I found and I ate one when taking my steroids. That worked fine for me. My goal was to avoid all side effects but I'm pretty sure I was shooting for the impossible there :) But I will say I'm on day 6 and I've had no nausea, some food taste changes which stink but they do seem to already be getting better, some tiredness but I've still been able to walk every day that I wasn't fasting (not as much or as intense but hey it's exercise so it's all good), and some bone pain from my ziextenzo shot. That bone pain and the taste changes have made me the most mad. I like to eat so not being able to taste my food is annoying and although the pain isn't excruciating, it is unrelenting. I finally broke down and took a prescription ibuprofen pill they gave me permission to take yesterday and that helped. Constipation is pretty bad, too, right now which is uncomfortable. Next time I will start taking bowel softeners immediately upon returning to eating after my fast and see if I can help head that off. But that's it. I'm annoyed but not incapacitated so all in all it could be a ton worse and I will fast again next time, too.

    I also ice my hands and feet. That's the worst, way worse than cold capping, but it is said to make a huge difference with neuropathy risks so I figure it's worth it.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534

    Have you tried Claritin with your shots? I’ve read it recommended by others here. I already took a daily antihistamine when I had my Neupogen shots and never had bone pain.

    When breaking a fast, I started with bone broth and homemade jello. They can help prevent constipation. Prunes help.

  • kaynotrealname
    kaynotrealname Member Posts: 346

    Thanks so much for the bone broth, jello and prune suggestion! I'll do that next time. And yes I'm on a daily zyrtec and can't take claritin when on that. Since I've been on it for years I may have developed a tolerance for it which is why I still had breakout bone pain. But it's also the only thing that helps with seasonal allergies. Claritin doesn't do anything which is why I don't want to replace zyrtec with that. My bone pain does seem better today thank goodness. I'm hoping I'm through the worst of it.

  • tsquare
    tsquare Member Posts: 19

    Thank you for your responses. I am weighing in on fasting to help with chemo side effects. Any more tips or extra info is appreciated.

  • kaynotrealname
    kaynotrealname Member Posts: 346

    I will say expect constipation and start immediately to treat it. I didn't. Biggest regret right now. It'll take me time to sort through that but other than that, on day 6, I actually feel pretty good. Hopefully I won't notice too much with my numbers drop this weekend but all in all this could have been way worse.