Cold Caps Users Past and Present, to Save Hair
Comments
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I have emailed an ice company to start getting info. They will deliver 80 pounds on Saturday to me, for $86.....is that good? If I get it on Saturday, will it still be good for Monday all day? I told him in the email I needed it for chemo from 6:30 AM- 5:00 PM. I asked for Latisse from my onc. and he said no problem. I forgot to tell him I wanted to use it during chemo cuz I saw one lady did.....will see what he says. I have the silica gel....want to start that too but not sure if it is beneficial or to wait. My fiji water has silica in it already! the PCC rep suggested fiji water.
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Hortense: thanks for mentioning your experience at MSKCC. About a month PFC in 2010, I was at a private party in CT for a friend, who has a foundation at MSKCC. His friend Dr. Murray Brennan was there, recently retired chief of surgery at MSKCC and specialist in soft-tissue (sarcoma) surgery. Murray was astounded by my experience, not only with my hair, but with my vitality, coloring, and overall condition. He said he'd never seen a person go through chemo looking and feeling like I did. It was about the biggest affirmation of all, clinically speaking. His partner was even more ecstatic, as she also had never heard of Penguin Cold Caps and (as a woman) realized what a huge thing this was. Quite a few people came to talk to me at the party, including other cancer survivors, and several folks have sent their friends my way.
Susan
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Schoolmom, I just emailed you my writeup, but so glad you found this list.
For water, my chemo nurses told me to drink 1 oz water for every pound I weigh, daily, throughout chemo (I did TCx4@3). Chemo is active in your system only during the infusion, and as soon as the needle is pulled out it is a waste product. Much of the PCC protocol is designed around the same principles of detoxing the chemo: flushing it from your body with water, keeping as active as you can with exercise, walking, whatever -- to flush it from your cells and also oxygenate your red blood cells, which in turn helps your liver function which in turn helps you keep your hair.
The results with PCCs and TC are *excellent*, and TC is -- believe it or not -- a very manageable, livable chemo regimen for most women. I know that sounds absurd -- it sounded absurd when a friend who'd been through it told me -- but the SEs are very well understood and manageable as long as you don't hesitate to act whenever you feel any symptoms. (I rarely take meds, for example, but promised myself I would not allow myself to suffer one single second unnecessarily throughout all of this. And I didn't.) On my very worst day of chemo, I felt proably 87-90% of normal, believe it or not. Most days, I felt 99-100%.
Please don't hesitate to post here or contact me if you have any questions. This is a great, great group and you are not alone (and if you are pioneering this technique at your cancer center, it's even more satisfying in the end). I believe there has been at least one other Houston-based user, but maybe from a year ago?
Susan
My writeup has a lot of these details. Please don't hesitate to contact me!
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@schoolmom-The dry ice wont last through Monday. If Saturday is the only day you can get it then buy more. I would get at least 120 lbs. and pack the coolers as tight as possible, filling any air space with towels. Keep the coolers stored in the cool, dark space such as the garage. Continue to look for other dry ice dealers, you might find a better price.
Ang7-Thetaxotears URL takes you to that website. Not sure why that is. I share your enthusiasm for finding such information-the stuff physicians don't bother sharing with us. Also grateful to have found bc.org-a wonderful source for information and a wide welcoming community of supportive sisters.
seb9-Chemo is active in your system only during the infusion.Chemo is active in your system as long as it is IN your system. It doesn't stop being active when the needle is pulled out. I think what you were trying to relay is the importance of cleansing the system by drinking large amounts of water. I agree this is helpful for aiding the liver to detoxify the body. I'm not sure if many know that Taxotere and Taxol is eliminated by...stool. This is one reason why it is important to take stool softeners if you find you are constipated after chemo treatment.
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My chemo is scheduled to start at 930 AM but I am going to call and push it back later in the day so I can get the ice in the morning. Also, going to look into pellets instead of blocks...what do you all think???
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Somebody explain the icing of the fingernails and toenails for Taxotere. Do you just do it for the hour they give you taxotere? What do you do.....stick your fingers and toes in bags of ice? pack them in bags of frozen peas? do you wear surgical or thin gloves? dont want to mess that up.........
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schoolmom - we got our dry ice the day before around 4:00 p.m. for my infusion the next day. The infusion was slow to start at my center - usually didn't start the caps til around 10:30 or 11:00 a.m. I had to wear the caps typically until 6 or 8 p.m., depending on how slow my infusion nurse was to switch out my different infusions (grrrr...). When we used 80#, and by late evening the caps were starting to not be cold enough. When we switched to 100#, they were plenty cold. Getting the ice the night before was great b/c then we'd have it ready the next a.m. to put the caps on ice 3 hours before. Made the day of chemo a bit less stressful with not having to pic up the caps the same day.
I used blocks and had them wrap each 10# block in paper. That worked quite well for me.
For the fingers and toes - start 15 min prior to Taxotere, continue through Taxotere, then add 15 min post tax (total 1.5 hours). I wore gloves and socks with the toes/fingers cut out b/c man does it get cold. I used baggies filled with crushed ice from the infusion center's machine and kept my hands/feet in small dollar store collapsable coolers to avoid leaking stuff everywhere. I could not keep my toes/fingers on ice nonstop - when it became painful/too numb I would have to remove them for a few moments...didn't want to give myself frostbite! So you have to have a balance there. I also chewed on ice which kept me from getting any mouth sores and I believe is also why I never suffered any taste changes.
I will warn you...that 1.5 hours was misery. The coldness from the caps was nothing in comparison to the coldness from icing toes/fingers/mouth. However, it is only 1.5 hours. Well worth it to me to avoid losing fingernails, taste, mouth ulcers, etc.
Dress in warm clothes/layers and bring a heated blanket - you'll thank me for that advice for sure!! And some hot chocolate after the Tax routine is done is like heaven.
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I ditto the misery of icing fingers. Brutal! And interestingly, sipping icewater first time,I had no taste problems. This time I crunched ice the entire time and lost my taste on day 4 after chemo......Go figure!
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301724 - maybe I give the icing of the mouth too much credit for the no taste changes, then - maybe just lucky on that one!
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I iced fingers and toes fifteen minutes before, during and fifteen minutes after taxotere. I agree it is far more painful than the cap.
I couldn't bear the fingers so I adopted a three minute in, one minute out routine which I kept track of my iPhone. My nails are a mess, but only one lifted and it settled back after I taped it for a week or so.
When my husband put the first cap on my head, I thought "this has to get better because no one could tolerate this for hours." Five minutes later it was bearable. So don't panic the first time -- you can do it!
The second treatment, I took a leftover painkiller when I arrived at the infusion center and bought a heated throw -- the difference was SO huge!
Remember these chemo nurses work for you! Other women experienced some hostility/resentment at my center. I wrote an email to my oncologist setting forth my expectations surrounding the caps which concluded that if the center was unable to accommodate my requests, please let me know so I could move my treatment to a different center. My oncologist loved the email -- I said what she wanted to say but couldn't.
I put on a cap shortly after we arrived in the waiting area. They did NOT want me sitting out there with the coolers and a cap on so I was always sent back quickly. My husband told -- didn't ask, told -- the chemo nurses what we required timing wise. I never got any pushback at all.
I gather they are more accepting of the caps now, but if you are one of the first you may encounter negativity or hostility. Don't let it get you upset -- it is so worth it to have my hair. I still can't believe it -- like I got away with robbing a bank or something.
I had a few infusions in another city at a center that was hosting its first cap user. The chemo nurse told me she was so upset when she saw that woman and her coolers because she knew how crushed the patient was going to be when her hair fell out so she tried to prepare the patient. The nurse was in total shock when the patient showed up for infusion with her hair. So sometimes they aren't just being difficult -- they truly do not believe the caps work.0 -
I just got a call from one of our friends here who told me to check at Krogers, a local grocery for the ice. Going to do that today.
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I did not ice fingers or toes, and fortunately had no nail issues - except they were a little fragile.
I also feel like I got away with something, sort of like I cheated!
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For the ladies who had a freezer in their infusion center, what was the temperature of the caps when you took them out? About how long did you have to knead to bring them to the correct temperature? I was originally doing caps with dry ice and coolers, but have now switched to a hospital with a cold caps freezer, so my timing is completely off and I'm starting to panic with first tx coming up on Friday!
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TLYM, How many caps do you have? Penguin does not send as many caps for dry ice users. I used a freezer and was sent 14 caps. I think dry ice users were sent 8 caps, because you can re-freeze them when using dry ice. You cannot re-freeze caps during a session when using a freezer.
We took the caps out of the freezer about 5 minutes ahead of use, checked the temperature(sometimes just a few degrees too cold) kneeded them, checked the temp again, and they were usually just right by then. If we checked them and they were at the correct temp. we just threw them back in the freezer until it was time.
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Sneaky, this is the first time I have posted here, though I have been lurking and learning for at least a couple of months. I start chemo on Fri., November 2nd at Sunnybrooke in Toronto. I've purchased ElastoGel cold caps based on the recommendation of several people here on the boards. It won't be easy, and the worst of it is the attitude of Sunnybrooke - a world-class hospital! My oncologist is flat-out against them and the nurses have already eyed me with a sort of suspicious sympathy.
Regardless, my point in posting is to let you know that there is a Canadian rep for something called the Paxman cooling system which originated and is used in 127 hospitals across the UK. I dearly wish I could take advantage of it, but no such luck. On the other hand, depending on when your chemo is scheduled to start and whether or not your oncologist and hospital are open-minded, she might be able to get a unit sent to your hospital for a trial.
Here is a link to the Paxman UK site and the site that will give you the contact details for Linda, the Canadian rep.
http://www.paxman-coolers.co.uk/
http://coldcomfortcanada.ca/index.php?id=features
Best of luck!
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Laura5-Yes, Geralyn has already sent me the additional 6 caps. Hopefully will be receiving them today or tomorrow. It sounds like the freezer will have the caps closer to the correct temp than the dry ice. I was previously told to take them off ice about 10 minutes ahead of time, so your advice is really helpful. Thanks!
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TLYM - I use a freezer. Generally we don't have a "too cold" problem, but we sometimes have a "not cold enough" problem. Usually by the time my helpers get the caps out of the box and opened up, the temperature is just right. We have tons of caps in our freezer so if there are any rejects because the temperature is too warm we just set them aside and take another one out of the freezer.
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TLYM, Oh good, I'm glad you knew that you needed more. The freezer really does work out well, just don't forget to wipe off each cap just before using. Good luck!
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TYLM-So much easier with a freezer! Less juggling of caps and dry ice. When using a freezer the caps are consistently the same temperaure, whereas, when using dry ice you'll find variations. BTW I always bring dry ice even when using a freezer. I use it to re-freeze the headbands as well as a back-up for re-freezing extra caps that might be needed-and have been several times.
IMPORTANT NOTE TO USERS-I know you are advised by the Penguin Co. to put your caps in the freezer 24 hours prior to chemo. The caps require more time than that to reach the proper temperature. I advise everyone to put them in the freezer 48 hours prior to treatment.
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I used a freezer at the center and we did not have an issue with temperatures at all. My husband would pull them out a few minutes before a cap change was due and he would knead them and then we quickly changed caps. We did test each cap with a thermometer when we took them out of the freezer and all were the correct temp. Good luck!
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Well, lucky me, Fedex screwed up my shipment of additional caps and they won't arrive until Thursday now for Friday infusion! Had such a bad day, with pharmacy issues regarding my neupogen and six phone calls to straighten it out, the Fedex issue was just icing on the cake! After bawling my eyes out, my plan (so as not to delay tx) is to freeze the first 8 caps in the infusion center freezer and take the remaining 6 on dry ice.
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Just a note of encouragement, TLYM...
My caps arrived the day before chemo when I was at work so by the time I got home
they had been sitting in the 90 degree summer heat for quite awhile.
They felt very warm and I remember sitting by the box and bawling my eyes out.
I kept most all of my hair. I know it's hard, but know that we are there with you in spirit.
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TYLM-That'll work out fine. You will only need to get @ 50 lbs. of dry ice. I gotta tell both you, and Ang7, I can truly relate to your feeling of complete loss when you just had to bawl your eyes out. I've experienced those moments myself. Thankfully, they never last. We take a few deep breaths and find a solution, and overcome. While I don't welcome those moments, they have made me realize-I am strong
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Thanks, Ang7 and Makingway for the words of encouragement. I'm sure it's my impending treatment that has made everything so much more dramatic. A nice long bath and a cup of hot tea has made me feel more like myself again. It's incredible the amount of love and support that is shared in these forums, and I'm proud to be a part of this group of strong and positive women!
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I feel for you TLYM! Sounds like you have a great solution though.
It will be rather hectic those first several cap changes, but after that, you and your helper(s)will feel like pros
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Hallelujah! Fedex has found my additional caps and will be delivering by the end of today-in time to get them in the freezer tomorrow for chemo on Friday! Now may I please get off this rollercoaster?
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Yay TLYM!!!
Question: Is there anyone here who has highlighted (blonde) their hair after chemo? The PCC guidelines say to wait 6 months to color, but isn't highlighting harder on the hair than coloring? Just wondering if I should wait longer than 6 months. 5 months PFC today - wahoo!
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Great news TYLM!!! Good luck on Friday. We will be there in spirit and sending "warm" thoughts!!!! Big hugs!!!
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~dance trancer, I highlighted my hair at 6 months....I'm almost 2 years out....my first chemo was 11-13-10....and highlight every 12 weeks or so....I just got my hair done yesterday and my hairdresser still runs her fingers through my hair in amazement...she has helped a few woman going thru chemo. No ill effects....and I was one of the folks who shed for almost 6 months....
Good luck to all starting! You will be happy you chose to use the caps, it can seem overwhelming at times...but I always said its eight hours every 3 weeks (TCx4)...I can do that!0 -
Thanks so much lmflynn for sharing your experience!
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