Icing

Molly110 said:

Els and Primavera

I think I have 5 pair of top and bottom Nature Cure inserts for the booties, and that was barely enough, but I didn't have a portable freezer. I wish I'd known that such a thing exists, as I may have had less neuropathy had my mitts and booties been colder. I froze them in advance and then put them in two separate ice chests which I took with me. I didn't reuse them during a session, as I had no way to re-cool them.

Remembering that not every one gets neuropathy, it's hard to know why some people get it and some don't, but you may want to ask your doctor about taking breaks during which you don't have the mitts and booties on. I kept mine on even to walk to the bathroom and use the toliet. It was easy to walk on the booties, and my wonderful chemo nurse walked the IV stand into the bathroom with me. I then took off only one mitt for the few seconds it took to wipe and wash my hands. Yet I had significant neuropathy and still have a lot in my feet. I may be unusually senstive to the nerve damage these kinds of chemo can cause. If I'd known then what I know now, I also would have started acupuncture at least a week before chemo with an acupuncturist experienced with treating people in chemo specifically to prevent neuropathy. Had my gyn/oncologost and nurse practitioner not recommended acupuntcure to me after my first chemo, I would likely have dropped out of chemo. It think it is outrageous that most insurance does not cover acupuncture for people in chemo, which puts it out of reach for most of us.

I also, on the advice of my nurse practitioner, took alpha lipoic acid and a B vitamin throughout chemo, as well as some other supplements she approved in an effort to prevent or mitigate nerve damage. She was clear that the evidence is not strong for much of what I tried, with a few exceptions, but I tried everything she said was safe to try. I've just ordered glutamine powder on the recommendation of a woman who posted about it in a recent thread. 

Of course, everyone is different, and many people don't develop neuropathy and didn't ice or do anything else in an effort to prevent it. My sister in law had many, many months of taxol -- much more than I had -- for a different kind of cancer, and she never had a moment of neuropathy, although she didn't ice or do other preventive things.

It would be so much easier if there were a way to predict who will and won't get neuropathy. 

...that not everyone gets neuropathy. But I know that if the possibility exists that I would get it, I don't want to regret it later. Someone said frostbite is a worse problem, but I haven't heard that it happens that much.

Primavera said:

I was told not to worry

...that not everyone gets neuropathy. But I know that if the possibility exists that I would get it, I don't want to regret it later. Someone said frostbite is a worse problem, but I haven't heard that it happens that much.

It's correct of course, that not everyone gets it, but it's very common with certain chemo drugs, and my understanding is that there is no way to tell with someone who is having chemo for the first time.

Once your doctor tells you what your drugs will be, you will know much more. Perhaps you were told not to worry because the drugs they expect you to have aren't associated with neuropathy? I hope that's the case. The two drugs often used with uterine cancer, or at least used with USPC -- the kind I had -- are both associated with neuropathy, and, if I understand the literature, neuropathy is the most common reason that women with uterine cancer on that regimen quit chemotherapy. So, for anyone starting chemo for uterine cancer, I think trying to prevent it is wise.

Thank goodness you will soon know more. It must be so hard to wait. Mine all happened so fast. It was only a week from my diagnosis to the CT scan to the hysterectomy, and staging was only a couple of days later-- a much shorter time than expected. It went really fast, even though my gyn/oncologist had the pathology double checked, something he always does with UPSC, I think. It was either move fast or wait a couple of weeks to get on the schedule for the Da Vinci machine. I will always be grateful to the scheduler who got me in so quickly. I wanted to move fast because of the particular cancer I had. Had it been a less aggressive cancer, I would have wanted to move more slowly and have more time to think and plan. At least I think I would have.

At my center as part of "Chemo 101," the nurse practitioner gave me handouts from chemocare.com on the drugs I'd be using. The site is from the Cleveland Clinic, which is not where I got care, but the site is known as a really good information source. I went back to it over and over again for information on drug side effects. Anytime something weird happened with my body, I'd go to the site and check, and sure enough, whatever happened would be a side effect of one of the drugs. Knowing that kept me from freaking out. Both my gyn/onc and nurse practitioner were always available, but I didn't want to bother them between appointments with minor things that were known side effects. 

Primavera said:

But they can't be found for sale...sad

My boyfriend just called me and said he found the last 3 somewhere. That's the mittens only. His niece is a radiologist and her husband is a sports medicine doctor. They said "not everyone develops neuropathy" lol...and I said I don't want to find out I'm in the list of the ones who develop it.

I don't care about recalls. I guess two people got frostbite? I know they have worked for other people and I would use them. But I can't find the booties at all.

Places that sold both the mittens and the booties said that the manufacturer has stopped sending them to their store.

Thank you, Molly.

Hello Primavera,  I am sorry about your recurrence.  I wanted to let you know that I used some plastic bags that a nurse gave me.  I put ice in one and then slipped my hand in another and put it in the ice.  It worked well.  Same for feet. You do need to have someone change the ice periodically as it melts.  If you are in chemo alone, perhaps a staff person would help you.  Good luck!!!

Primavera said:

Thank you

Everything happened really fast with my uterine cancer, too. It was a grade 3, although it was the common kind. My gynecologist called the oncologist herself and then right away I got scans done. That same night. Everyone seemed to be in a hurry for me and that scared me a little, but I got the hysterectomy and I was staged 1a and had brachytherapy.

Now it's a different thing. From mammograms to biopsies, but all done in about a week. Then to see surgeon and now to wait till Sept 15 to see oncologist.

The person who told me that neuropathy doesn't happen to everyone is actually a young radiologist, niece of a friend. And she also said to ask permission from oncologist to ice my hands and feet, so I don't think she knows much about this. I know about icing because of this site. But if you don't have cancer, you probably don't know much about icing, even if you're a doctor. Her husband is a sports medicine doctor, so all I wanted to know was if they had access to these mittens and booties I couldn't find. They sent me a link of some study that said that mittens could help with neuropathy, but we already know that here.

I read everywhere that Taxol is one of the ones that causes it, and that's a very common drug for breast cancer. I worry about taxotere that could make my hair never to grow again (there's some lawsuit going?) because I used to get alopecia when I stressed, but those are just extra worries. I'm trying not to read to much on the drugs yet because I don't kmow what I'll have.

Alopecia is a potential side effect of taxotere, but it's not a certainty. It's in the same class of chemo drugs as Taxol and it's as effective for treating the cancer which is something you want. Some people tolerate taxotere better when they can't handle taxol, so it's one of the things they can try as an alternative if you have trouble with the first infusion. You don't want to not have that option to turn to because ultimately NED matters more than hair.

I was such a case and was worried about my hair not growing back, but ultimately told myself I'd rather have to wear a wig the rest of my life than have the neuropathy I had get worse than it was from the first infusion or not kill the cancer in frontline treatment. Double Whammy's hair did not grow back, but she's the only person I know of that had that happen to her. 

My hair on my face and head all came back, but no where else. Maybe because I wore a bag of ice on my head during infusions? Imagine! I haven't had to shave in four years, so for me it's been kind of a plus. It really doesn't matter which chemo drugs you have, it's always a cr*p shoot which side effects you are going to have. We're all different.

Losing your hair can be hard to handle because we all have so much of our sense of self wrapped up in having it, but it can also be very liberating to not have to spend so much time fussing with it every day for a while. There are many days I'm tempted to use my wig again, but of course now I have hair to try to stuff into it, so it wouldn't be quite the same. It'll be ok if you can think like India Arie and tell yourself 

"Hey (hey)
I am not my hair
I am not this skin
I am not your expectations, no (hey)
I am not my hair
I am not this skin
I am the soul that lives within"

I've been out of town and just saw this post!

 I began chemo with the standard endometrial cancer protocol, which was carboplatin and paclitaxel.  Two days after my first chemo, I developed acute onset severe neuropathy in my hands and feet.  It felt like the worst case of pins and needles you can imagine, and quickly got worse to the point that I couldn't walk properly or use my hands properly. The next day I was hospitalized with aFib and RVR - two different heart arrhythmias.  They got my heart rate down and I went straight to my gyn/onc, who said she wasn't sure what caused it all - the paclitaxel, the steroids, or the supplements I was taking to prevent neuropathy.  I told her I wasn't sure I could continue chemo if I was going to be so disabled that I couldn't care for myself.  She decided that my second chemo would be carboplatin only, and then for the last four I would have carboplatin and taxotere (which is exactly what my two friends with breast cancer were prescribed.)  She also said that the acute onset neuropathy often dissipates quickly, as opposed to regular chemo-induced neuropathy, which is gradual and usually permanent.

I tell you all these things NOT to scare you, but to tell you how it spurred me to research!  This group told me about icing, and I jumped on it.  The first time I did it, I just had ice cubes in ziploc bags, wrapped them in kitchen towels, and I used big rubber bands to secure them to my hands and feet.  Then I went to Target and found regular "hot and cold" packs in the first aid section.  They are little gel beads in a sturdy vinyl cover, and they had padded elastic velcro  straps to slide them in and secure them to the body.  I know some people have purchased expensive mitts and booties - I do have a bootie from when I broke my ankle and it's by the Elastogel company (Amazon) but you really don't need to go to that expense.  However you do it, just take a cooler to chemo with you, full of the frozen icepacks, and get them on those hands and feet!  Keep them there during infusion.  I am LIVING PROOF that it works - my initial neuropathy completely resolved before the second chemo, and I never got one single bit of neuropathy from the remaining five chemos.  Just want to add here too that I started out with the doses of glutamine and B vitamins that my nurse case manager recommended, but after that first scare not knowing what caused all of the neuropathy and heart stuff, I did not take any more glutamine or B vitamins.

Please be encouraged.  Chemo is do-able.  It really is! I know you're scared.  I was too.  My friend Lisa who had been through it for breast cancer spent a lot of time on the phone with me the day before my first chemo. I was absolutely sure I was not going to live through that first day, and she promised me I would.  I did, and you will too. Your chemo nurse will be with you and will watch you closely.  You will receive steroids which will help you.  Because I didn't know whether the steroids had contributed to my heart issue (I already had arrhythmias so don't worry about this in your case), I asked that my steroid dose be cut in half for the rest of the chemos, and I did fine with half the dose.  You will get anti-nausea meds just before you start chemo, and prescriptions for more to take home with you.  I never needed to take one - not one! Also, I will pray for you the same thing that my daughter prayed for me - that you will retain your sense of taste and your appetite.  I can tell you that my doctor told me to expect my sense of taste to be off, and perhaps a metallic taste in my mouth.  It never happened even once.  I was able to eat and enjoy everything I wanted during chemo, and I know it was due to my daughter's prayers. I admit that is unusual, and you may have a bit of a challenge with it, but please know that it is temporary.  Hair loss is temporary. Mine came back just fine after chemo, even with the taxotere.  I have one eyebrow that's a little thin (brow powder and a stencil takes care of that) and my hair is very thin on top, but it was thinning before chemo and I have thyroid issues too.  Chemo goes by quickly and you will bounce back afterwards just in time to encourage the next dear sister who faces this journey.  Much love to you!

els19 said:

Thank you!

I had just finished my first round of chemo 6 years ago this month and then started radiation. I was very blessed to have had so long dancing with NED after that. But now I'm having a reoccurrence and they are rushing me back into chemo. I just found out last week! I did struggle with neuropathy last time although not as severe as yours was, Army Wife. But at points it was fifficult to use my hands and my feet were numb. I started the Glutamine and that helped. Now 6 years later I only have very mild numbness in my hands. But my feet are still numb. It's gotten better over the years but my great fear is that if it gets worse again and doubles what it is now in my feet I will be in big trouble. So I want to ice to hope I can just stay at the level I am now. If it does get worse the nurse practitioner told me they'd change the chemo. I'll be on Carbo/Taxol like last time which obviously worked! I have been gathering ice gel packs, booties and mitts and another amazing woman on this board sent me hers. im just worried the cooler will keep things cold enough. We looked into a portable freezer but so far haven't found one that I can manage on my own and now with Covid rules no one can go with me. But I was told the chemo nurse will provide me with small ice packs. So I can use those if needed. If zip loc bags and rubber bands worked, I can work it out! I'd do the ice water in boxes if I had someone to help me. I go tomorrow and I'll know more then. Thanks for all the good wishes! 

I was so terrified of not keeping things cold enough that I went into getting a portable freezer. I just didn't want to spend a lot of money and I didn't want to carry a huge thing. So maybe the mitts won't fit in while there are packs inside, but I still didn't want a huge thing. We got the BornTech Electric Cooler Portable Refrigerator Freezer (9 Liter). I'm having it as a just in case thing. I'll probably freeze everything for hours beforehand anyway in a real freezer. But this is almost like a cooler. We got booties and mitts and I'll be upset if I don't get to keep those cold as I intended.

I sure wish that I knew my center will provide me with just ice water and ice, because that might work better, but I haven't seen my oncologist yet and I'm only afraid I will be sent straight into chemo right after I see her on the 15th. This will be my first time, and I don't know much. I don't even know if there will be an outlet available to connect this tiny freezer.

Good luck tomorrow. I thought you said tomorrow is when you start.

els19 said:

Thank you

Thanks for the good wishes! It is hard not knowing what the chemo center will have. Since this is a reoccurrence they're doing things different for me. I spoke to the nurse practitioner last week but won't see my oncologist until tomorrow right before chemo. This has been a real rush to get me back into treatment. I have the mitts, booties, and  lots of extra gel packs chilling in the freezer. I wasn't able to get a portable freezer in time but I have a cooler that keeps things cold for a long time. It's being chilled over night too. And I just got home with a small luggage cart to carry it as it was too heavy for me. I'm hoping it all works. I'll let you know. If it needs to be colder I'll have time to get a portable freezer for next time. But who knows I could switch to ice and water if the chemo center helps with it. Hey at least we're trying to make things better!

My gels and mitts arrived today and I feel better already. They're heavy! I'm still hoping they do ice and water and that they help with it. Good luck and hugs.