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Icing

els19
Posts: 90
Joined: Jun 2014

I'm starting chemo on Thursday and want to try icing during infusion to prevent neuropathy. The chemo is for a reoccurrence and I still have numbness in my feet from the first time. Has anyone tried it? Any tips or ideas? i ordered booties and gloves but I've also heard of using ice bags. Did you wear gloves and socks? I'll be infused with Carbo/Taxol. Is it only needed during Taxol? Any help would be greatly appreciated! 

zsazsa1
Posts: 553
Joined: Oct 2018

Els, I am SO sorry to hear of your recurrence, and after five years!  Here is what I did for icing, and what I learned.

I never tried the booties and mitts, but I somehow doubt that they would be cold enough.  However, without a helper, I don't know if you could do my method.  Maybe the nurse or medical assistant could help you.  I brought a cooler with a large bag of ice from the supermarket, along with quart sized tall takeout soup containers for my hands, and plastic shoeboxes for my feet.  Get four boxes, that nest, so that you can put a layer of ice in a bottom box, and then ice water in the upper box.  The only place that I have any numbness is the ball of my left foot, which would rest on the bottom of the box when I would fall asleep from the Benadryl, and so be against the warm floor.  Hence the recommendation for the nesting pair of boxes, with ice in the lower box.

Fill the upper boxes and the soup containers with ice and water, beginning about 15 minutes before Taxol.  Have the helper remove water and add ice throughout the treatment.  Bring along a heating pad to place over your midsection, so that you don't get too cold - this was very important.  Keep icing right through the Carboplatin at the end - don't stop until you're leaving the treatment center.

Other advice - see if they can do a biopsy of a node to get tissue to test for Her2Neu status, to see if you are eligible for Herceptin.  It appears to double life expectancy, if you are eligible for it.  And start asking about proton beam radiation targeted to the sites of recurrence.  From what I understand, it's like a laser beam of radiation directed exactly at the desired areas.  It may be useful in your case.  Worth asking about.  Get a consult at a center that does it.

els19
Posts: 90
Joined: Jun 2014

Thank you. I'm not sure now which way to go. Did you wear socks or gloves?

MAbound
Posts: 1101
Joined: Jun 2016

I did the icing using the elastogel slippers and mitts.

The advantage of this method is that it's a lot neater to do than Zza Zza's method, but it's a lot more expensive. You need to start icing at least 20 minutes before the chemo drugs are started and for 20 minutes after they are done, so I needed 4 pairs of slippers and 4 pairs of mittens in a big cooler of ice (on wheels really helps for transport) to get through each session. $800, but worth every penny. Each pair would stay cold enough for about 45 minutes of use.  I hadn't heard about icing until I was in the throws of neuropathy from my first infusion and looking for relief in a hurry before the next. I don't think there was anything on this board about doing it when I first came here, so I didn't care what it cost because I was in so much pain from the first infusion.

On a side note, I also took gallon ziplock bags and hand towels and used some of my ice to keep a bag of ice on my head. It just felt good to me (I'm used to doing this for migraines that I get) and I think it had the added benefit of me keeping peach fuzz on my head through most of treatment. It was enough to protect my head from some of the scalp irritation that others had issues with.

Besides Zza Zza's method and mine, I think ArmyWife had a great method that was neater, cheaper, and perhaps as manageable as mine was. The big advantage of the slippers came when I needed to use the bathroom (which is a given when an IV is running into you)....I could walk there in the slippers using surgical booties to keep them clean.

You probably know the following since this isn't your first trip to the rodeo, but just in case a reminder is in order:

Besides the icing, it's important to start taking Vitamin B12 because you are likely deficient from the cancer, and other things converting active B12 into it's inactive form. B12 is important for nerve function. B6 and Folate are important, too, but be careful not to take the megadoses that they come in as supplements because those have upper tolerable limits and can actually contribute to neuropathy if you take too much of them.

Hold off on anti-oxidant/anti-cancer supplements you may be taking during chemo/radiation. You don't want to suppress cancer cells now because treatment targets active cells.

Remember to also drink at least 2-3 quarts of water daily throughout chemo. It's critical for flushing the chemo drugs out of your system after infusions and for preventing constipation like you've never experienced before. That can't be emphasized enough. Ask your doctor or chemo nurses if they want you on any kind of a bowel regimen, like taking Miralax preventively, too.

Pack a lunch or snack to take with you. They want you to eat and drink during chemo. The infusions are timed for when cancer cells are at their most active, so this is a time when feeding them can be a helpful thing. 

Good luck to you!

els19
Posts: 90
Joined: Jun 2014

Thank you! I love all your suggestions. Did you wear socks or gloves? I've read some people couldn't stand the cold without a barrier. 

MAbound
Posts: 1101
Joined: Jun 2016

I originally started out with just surgical booties over my bare feet as the instructions suggested, but wearing socks was a bit easier and my feet got cold enough. I had no problem with the mitts, so I did not wear gloves. The cold on your feet is the hardest to bear for the first 10 minutes or so, but if you can make yourself get through that it gets easier. I used the slippers to deal with the neuropathy pain at night, too, so I feel like I really got my money's worth out of them. 

BluebirdOne's picture
BluebirdOne
Posts: 370
Joined: Jul 2018

I had booties and mittens and it was easy to get to the john, (we had private rooms, some with a bathroom) as the IV chemo adds a lot of fluid to your system and you are there for hours. I already had incontinence from surgery (which has mostly resolved) so it was a big deal for me. Good luck to you and keep us up to date as you are able.

 

xxoo

Denise 

Primavera's picture
Primavera
Posts: 220
Joined: Mar 2019

Could you let me know what booties you all got? I see that Elasto-Gel has been discontinued or is on pause by FDA orders. I found some recall letter.

I have breast cancer now and the surgeon recommended chemo before surgery because it's aggressive. I think it's coming up pretty soon.

https://www.elastogel.com/images/stories/pdf/recall_letter_2017.pdf

Molly110
Posts: 184
Joined: Oct 2019

Primavera, I see that the notice is dated 2017, and I bought mine in October of 2019, so I think they are no longer recalled. My guess is that the company had been marketing them with chemotherapy as a use and didn't have FDA approval for that. I know when I bought them last fall there was no mention of chemotherapy in the marketing materials or instructions. (I think of myself as a pretty competent researcher when it comes to stuff I buy -- especially health stuff -- but I never looked the mitts up!)

Take care,

Molly

Primavera's picture
Primavera
Posts: 220
Joined: Mar 2019

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.

Maxster
Posts: 63
Joined: Apr 2020

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!!!

 

Molly110
Posts: 184
Joined: Oct 2019

Els, I’m so sorry you had a recurrence. 

I used the Elastogel mitts and booties (a different brand since I don't think Elastogel makes booties), and I had a lot of neuropathy despite that – in my feet, like you. I wish I'd known then about direct icing. I agree with ZsaZsa that the mitts and booties likely do not get cold enough. I think in the studies the mitts were frozen to a much lower temperature than can be achieved in a regular refrigerator. Plus, the mitts need to be changed frequently, which requires a lot of vigilance, and also is quite expensive, as you know since you’ve ordered yours. If I remember correctly, I needed 14 mitts to allow for using them from 20 minutes before the infusions started until 20 minutes after they ended. Last October when I needed them, I had a really hard time finding enough and had to order from several sources on Amazon. One shipment was delayed, and I was frantic trying to locate replacements for the ones that didn't arrive in time. Since you’ve already ordered yours, you won’t have that problem. 

I had intended to donate my mitts and booties to a local nonprofit organization, but once I learned about direct icing (which is what they use at Memorial Sloan Kettering) I decided it wouldn’t be helpful to encourage mitt/bootie use rather than icing if someone had not already decided.  But they seemed too expensive to throw away. I hate having them in the house, though, so what to do with them is a dilemma. If you hadn’t already ordered yours, I would have loved to give mine to you. If anyone reading this has also made the choice to use mitts/booties and would like mine, just let me know.

Warm best wishes, Els, for a good treatment experience and a happy outcome. 

 

els19
Posts: 90
Joined: Jun 2014

I can't find the elastogel items  for sale anywhere. I ordered some others from Amazon that had reviews that people said they used for chemotherapy with success but I now realize they won't get cold enough or last long enough. I was told that the chemo nurses will supply me with little packs of ice and assist me. But I don't know how much. I'm going to try to get more information. This has all happened so fast. I've only known less than a week that the cancer is back and I only found out three days ago my doctor wants me to start chemotherap this week. Hopefully I'll be able to work it out.

Primavera's picture
Primavera
Posts: 220
Joined: Mar 2019

I see some booties at amazon that have inserts on top and bottom. Maybe that's what you bought?

I'm not taking chances if I can help it. If I have to, I would strap ice packs to my feet.

I think you should have a few pairs or mittens or a few pairs blocks of ice if you want them to work.

You can message people through here. I think they get an email.

I want to think of getting a little cooler with dry ice, but to tell you the truth, I know nothing about dry ice or where to get it!

els19
Posts: 90
Joined: Jun 2014

Is there some safe way I could contact you? I haven't bought enough mitts and booties for the entire time. Perhaps I could purchase yours.

Primavera's picture
Primavera
Posts: 220
Joined: Mar 2019

They get sent an email.

Do you know how long infusions are? This is all new to me. I had uterine cancer last year and didn't get chemo. I have breast cancer now.

els19
Posts: 90
Joined: Jun 2014

It depends on the cancer and the chemo drugs. I know some people who have had breast cancer and went weekly for one hour. 

Molly110
Posts: 184
Joined: Oct 2019

Hi Els,

As Primavera said, I believe there is a way to private message me through the board. If so, please do. I would love to give you the mitts and booties. I have no use for them and want to pass them along, so I'm giving rather than selling. What I have are the Elastogel mitts -- enough for about 5 hours of infusion -- and then the kind of booties that Primavera mentions from Amazon with enough gel inserts for the top and bottom for about 5 hours.

Were I you, I'd use the ice packets or ice bath, but if you're going to use the mitts/booties, you are more than welcome to mine. I'd give you my email address here or ask for yours, except that the American Cancer Society says we shouldn't do that since this is a public forum.

Best,

Molly

Maxster
Posts: 63
Joined: Apr 2020

It was a nurse at MSK where I received my second opinion who gave me the plastic baggies.

 

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Tamlen
Posts: 294
Joined: Jan 2018

Els19, I'm sorry you've got to go through this. It sounds like you're being thoughtful about the groundwork that will help you be as healthy as you can be through it all.

I iced both hands and feet during chemo and managed to avoid all neuropathy -- I thank the icing for that. I began icing at arrival at my chair at the infusion center, which was about 30 minutes before infusion began, and continued for 30 minutes after infusion ended. I tooks brief icing breaks to eat, use the restroom, and take walks around the infusion suite to stretch my legs. Sometimes I had to give my toes a break too, as they got too cold each time.

As others have pointed out, the ElastoGel mitts don't stay cold enough for very long -- about 40 minutes for me. They also don't re-freeze very quickly. We'd put them in our freezer 24 hours before infusion to make sure they were as cold as we could get them. We bought a portable freezer on wheels (about the size of a cooler) that I could plug in next to my chair and I had 6 pairs of the mitts to rotate through. We also kept that freezer plugged in inside the car (using the car's plug outlet) to make sure the mitts had no chance to warm up on the 1-hour drive to the infusion center. The most recent pair went to the bottom of the little freezer each time I switched pairs, to help them get colder faster. By round two of each mitt they were never quite cold enough. If I ever have to have chemo again, I might opt for a bowl of ice and ice water in place of the mitts.

The NatraCure Cold Therapy Socks I bought on amazon stayed VERY cold, even too cold sometimes. I found that even putting on a thin pair of sock first wasn't enough to keep my two smallest toes safe. I found it worked to wrap each in bandaids and give my feet a break of about 5-10 minutes whenever I couldn't stand the pain in those toes anymore.

It was an expensive arrangement but to my mind, worth every cent. Good luck!

els19
Posts: 90
Joined: Jun 2014

I ordered the Natraure therapy socks. I ordered two with four refills. I never thought about the little portable freezers. Thank you so much! This may just work.

Primavera's picture
Primavera
Posts: 220
Joined: Mar 2019

I'll order the Natracure cold therapy socks with a few inserts.

I never thought of mini freezers. I just had to find the smallest one with the better reviews and not a price tag of more than $500. Not that I think it's not worth it, but I don't want to have an expensive little freezer after I'm done with this.

I think I found one. I wanted the smallest one I could get. I hope it works. Alpicool C15. But I'll keep on checking for a day or two.

Molly110
Posts: 184
Joined: Oct 2019

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. 

els19
Posts: 90
Joined: Jun 2014

Molly, I tried to send you a private message through this site but your settings are set to block  private messages. I understand because I'm super careful about public sites too. I'm going to try to take what I can Thursday to try icing. I sure wish my husband could go with me because he could carry more. I'm hoping the Chemo nurses will be helpful too.

Primavera's picture
Primavera
Posts: 220
Joined: Mar 2019

...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.

Molly110
Posts: 184
Joined: Oct 2019

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's picture
Primavera
Posts: 220
Joined: Mar 2019

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.

MAbound
Posts: 1101
Joined: Jun 2016

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"

Primavera's picture
Primavera
Posts: 220
Joined: Mar 2019

I agree about the hair. I don't spend much time with it. I don't even care about styling it or cutting it that much. Sometimes I go a whole year without getting a haircut. I used to be more into it when young, but not anymore. People have to push me to get a haircut.

It's only because I really don't have to want to worry about wigs and things on my head that I would like to keep my hair.

And I agree that life is more important than hair. Even with the cold caps I would be worried to wear those because I keep on thinking that I would want the chemo to reach my scalp if there's any way that would save me from a metastasis to brain.

I don't have to do my eyebrows for years, I have no hair on my arms or legs, never ever had to shave, so that's the only reason I worry a bit. But of course, NED is better than hair.

The neuropathy in hands and feet, but especially hands, I really don't want to have. I am a graphic designer and need to work on my laptop without pain.

Thanks for the song...made me smile. I want to thank you for the long list of good advice you gave me when I arrived here before the hysterectomy. It was all so useful.

Molly110
Posts: 184
Joined: Oct 2019

After checking my email several times in the wee hours this morning to see if I had anything, I went to my account settings and realized that I'd blocked private messages when I first signed up. I'd forgotten all about that, and I've corrected it, so do please message me so I can send you whatever I have that you need.

Molly110
Posts: 184
Joined: Oct 2019

Els, I just sent you a PM with my email address. I was excited to see FedEx was open today, but when I called they said they don't have any package pick up today. I just saw that your chemo starts Thursday, so I'm going to send you another PM with my phone number. I can put whatever you need in FedEx tomorrow and you can get it Wednesday.

Take care,

Molly

els19
Posts: 90
Joined: Jun 2014

Molly,  I will call you

Armywife's picture
Armywife
Posts: 452
Joined: Feb 2018

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
Posts: 90
Joined: Jun 2014

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! 

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Primavera
Posts: 220
Joined: Mar 2019

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
Posts: 90
Joined: Jun 2014

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!

Primavera's picture
Primavera
Posts: 220
Joined: Mar 2019

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.

jan9wils's picture
jan9wils
Posts: 150
Joined: Mar 2017

All I can add is: I wish I had known about icing. I joined this group shortly after my second go with chemotherapy and did not know about icing. Nobody mentioned it. I did not observe anyone employing 

Red Corvette
Posts: 114
Joined: Jan 2016

Mrs. Red did icing of head, hands, and feet during chemo treatments and had no neuropathies whatsoever. Mrs. Red did shed some hair bur never went bald and her hair came back like a rocket after chemo ended. We used Penguin cold caps for head icing and trays for hand and feet. It's not the easiest to ice but worked for us.

BluebirdOne's picture
BluebirdOne
Posts: 370
Joined: Jul 2018

centers are indifferent or ignore icing is that it is not a medically proven procedure and they don't want to promote something that might get them sued if the patient ends up with neuropathy after icing. Also as we see, the mitts and booties are expensive, my center reluctantly provided them to me. Not to mention they don't make money from icing, it complicates an infusion and the nurses are already stretched thin. I still think that enough of us have seen good results that they should at least provide information about icing, that it is not guaranteed and let us make our own decision, or even have the patient sign a waiver about efficacy. I find it amazing that the oncology community does so much to try and reduce side effects by funding new drugs, clinical trials, developing new procedures, etc. yet many of them totally ignore icing! Ladies, they all know about it, they just don't tell the patients about it unless asked. The terrible permanent suffering those with severe neuropathy endure is just too sad and I find it almost criminal that all oncologists, especially GO do not at least provide information. 

Denise 

Primavera's picture
Primavera
Posts: 220
Joined: Mar 2019

When I was looking for anything that would tell me what my future center will do it, I googled and got to a nurses forum. I don't think I can get in to ask questions because I'm not an oncology nurse. But since people are inquiring about icing, the nurses are talking about it. I did find an answer from a nurse form the center I was looking for, but in another city, so I have some hope.

I wish it was standard treatment. It doesn't do any damage to do it while they find out if it's effective and it doesn't cost much.

https://communities.ons.org/communities/community-home/digestviewer/viewthread?MessageKey=3cb5dfc5-bee4-4e3d-983d-72172aee13fc&CommunityKey=0b54ba80-79aa-446b-80ae-5434d67c4adf&tab=digestviewer

els19
Posts: 90
Joined: Jun 2014

Well today was the big day. My chemo center has a machine with cap for ice therapy for hair but nothing for hands and ice. I had booties from Amazon and Molly with lots of refills. They seemed to work really well.They are awfully cold and I wondered if I could do it but I just waited it out and it was fine. They do need the refills changed frequently. I had the estagel mitts and some from Amazon. The ones from Amazon never seemed cold enough. The esragel ones were cold but didn't stay cold long. So, I'm going to work on that before the next chemo. The ice baths that Zaa Zaa used or the gel pads that Army Wife used may be better for hands. I used a heating pad as suggested and was never cold. I did need help from the chemo nurse to change the gel pads. Since I didn't have time to get a port they had to put in an IV and I kept bending the line and my alarm was ringing a lot. But the chemo nurse was busy and it was hard for her to be there enough.  One good thing about reoccurrences is that I was a lot less nervous  today than I was the first time. By the way, you don't start over. Today was chemo seven. Oh and you do need to wear a mask the entire time. 

Thanks again for all the tips and ideas. And I'm nominating Molly for sainthood for sending me supplies. This world really is full of many wonderful people. 

 

 

 

Primavera's picture
Primavera
Posts: 220
Joined: Mar 2019

Reading on your experience for what's to come for me. Thank you for coming back to tell us.

The machine with cap for hair, was it free? I've heard of places that charge a ton and insurance doesn't pay for it.

I got a lot of those booties from Amazon and extra refills. You frozen them at home and carried them in a cooler and did they stay cold/frozen?

I also got two pairs of those mittens. Actually, 3 elastogel and another pair of Amazon mittens that look similar. You say they don't stay cold. Question: do you think you can put inside the mitts one or two of the bootie refills?

I read somewhere that some centers give you bags of ice. You put your hand inside a plastic bag so that it doesn't get wet, then you put your bagged hand inside a bag of ice.

els19
Posts: 90
Joined: Jun 2014

I didn't ask about the cost of the cap ice machine because I didn't want to use it. I don't think it was free. We have a new Coleman midsize cooler not on wheels but was advertised that it kept things extra cold for long periods. It did keep the bootie refills entirely frozen the entire time. We're an hour and a half drive from the cancer center. I had to meet with the doctor before the chemo and since I had a reaction last time to the taxol they starte my therapy slow. So, it was five hours for the entire infusion. I felt I needed to exchange the refills every 30 minutes to keep the extreme cold level. The booties could go longer but not the mitts. I read someone used dry ice and maybe they got their mitts colder. But dry ice was too scary for me LOL. I also had some square gel refills and started putting them in the mitts and i plan experimenting with both styles of mitts before the next chemo to see how they work and I'll get more refills if necessary. But then I'll need another cooler. Even my little zip lock bags of frozen ice were still frozen at the end of the day in the one I used. I did buy a luggage rack to haul the cooler. I think I learned a lot yesterday and will do better next time. I kept a diary last time I had chemo and I wrote in it that the neurapathy symptoms showed up a few days after infusion. So I'll know if it helped next week and I'll keep you posted. I advise anyone to keep a diary. Mine has a wealth of information in it about meds, symptoms and what worked and what didn't. I hoped never to look at it again but I'm glad I saved it!

BluebirdOne's picture
BluebirdOne
Posts: 370
Joined: Jul 2018

 It was $400 a session in 2018 for a very fancy cold cap! This is the type of thing they need for hands and feet as it continually cools the cap. 

The new caps have cold liquid circulating through them and are connected to a computer that maintains the temperature of the cap at around 32 degrees Fahrenheit. These caps also have a covering that keeps them in place and helps to keep the temperature constant.

 

https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-cold-cap-therapy-can-reduce-hair-loss-caused-by-chemotherapy/

Primavera's picture
Primavera
Posts: 220
Joined: Mar 2019

Thank you for that. i am not sure I would want to do it because I would be afraid the drugs won't get to my head. 
But for sure I wish they did this for mitts and booties. 

els19
Posts: 90
Joined: Jun 2014

I'm happy to report that the icing worked for me! I had what was considered my 7th infusion since it was the first one for my recurrence. I still have the same amount of neuropathy from my past treatment. But there is no new increase in it. Success! I'm hoping it continues for the rest of treatment. 

Maxster
Posts: 63
Joined: Apr 2020

I am very happy that the icing worked!  Good luck for the rest of the treatment!

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1734
Joined: Jun 2015

So happy to hear this! I hope the rest of your treatments go the same way els19.

Love and Hugs,

Cindi

els19
Posts: 90
Joined: Jun 2014

I really appreciate all the support! This recurrence threw me as I know everyone understands. It was extreme abdominal pain that let me know it was back and of course the CT scan. My wonderful doctor and his team reacted immediately and had me back in chemo faster than I would have imagined. So, I had little time to prepare. Also I was in a narcotic haze to help the pain and I don't think well on drugs. But you wonderful ladies gave me enough information, support and help that I was able to try icing which worked. And it was by always checking in on this board that I knew about icing. I'm also happy to report that the chemo was able to help enough that I'm no longer in pain and off those drugs! I'm taking that as a good sign the chemo is working for me again. My doctor has already started the process of genomic testing of my tumor. He said he's very hopeful the chemo will work since I responded so well the first time and was able to be NED for over five years. But he's preparing for the next step if needed. Now clearheaded, I read back through the posts this morning and saw the idea of the cold pack on top of the head. I got a nasty scalp rash last time and plan to try that next week. But before chemo, I get a new port and have to get a Covid test today. Oh, my other good news is we got permission for my husband to go to chemo with me to help with the icing! I'm feeling very blessed! Thanks again everyone!

ConnieSW
Posts: 1545
Joined: Jun 2012

i was sitting here despondent about the state of the world and then I read your post.  It put a big grin on my face.  Hope is such a wonderful thing.  

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