Cold Caps Users Past and Present, to Save Hair
Comments
-
Hi there,
You can definitely have caps left behind by someone who has finished with them, but cannot share them. Where in New York will you be getting treatment? Some places have freezers for the caps. If you get in touch with Penquin cold caps they are the manufactures of the caps in England .They will be able to tell you where there are freezers and if there is anyone finishing with caps when you need them. I am doing it at N.Y. Presbyterian Weill Cornell Iris Cantor Breast Oncology Dept. at 61st and York. They have a freezer and perhaps someone will be finishing up with caps, when you need them. Let me know where you will be getting treatment and I will try to help if I can.
Nancy
0 -
OOPS!!
My reply was for Credenza.
Nancy
0 -
Well Hi there everyone,
I finished my first treatment on Friday. Taxotere/Cryboplatin and Herceptin.It was snowing all day, but didn't stick. The infusions went okay, no real side effects yet, except a little dry mouth, which has subsided with special mouth wash. My face is red on my cheeks and nose--makeup covers that, but need to find out if there is something to take for that. My appetite is good, food still tastes good. Maybe getting a little constipated, so will take something for that today. I am getting Neulasta on Monday AM-Oncology dept. closed for weekend. I am worried about SE's of that. What can I take to avoid the bone pain?? I remember reading something in the past pages, but can't find it.
Well, now to get to the big problem-- the cold caps. The 1st 2 caps I used after the 1 hour of infusion of meds for side effects were only in the freezer since Monday or Tuesday. I used them on Friday, they registered only -11 celcius and I used 2 like that and called Frank and he said that was no good and would have to repeat the hour at the end. Then they gave me Herceptin 1st,slowly for 1-1/2 hours to see how I would tolerate it, so that meant the herceptin time couldn't be counted as part of the 4 hours after the infusions(and I now had to do 5 hours after because the 1st 2 caps had to be repeated.) I then had 1-1/2 hours of taxotere,again slowly to see how I tolerated it, and then 1 hour of carboplatin. I changed caps every 30 minutes throughout this 4 hours-8 caps(plus first 2 no good ones. The 1st two caps of the 8 were at -32 celcius and the remaining 6 got less and less cold down to -mid 20's celcius. When we started the freezer read -34celcius on the front door. Previously the freezer had always read -44 celcius. As the day progressed the freezer temp. went up. By the end of the time it read -28.7celcius and -27 celcius. The freezer is malfuntioning, the room it is in was extremely warm.I don't know if freezer was giving off heat to room or vice versa. Most patients had canceeled because of the snow. I was the only one there except for one other woman who was there a short time. The staff said they were leaving at 4:30 because of the snow, which stopped a 3:30 and didn't stick at all. Sarah stayed till 5:30, so I was able to do some of the after caps there. Frank said to get dry ice to take the rest home, but there was nowhere to find it in the city. I took the rest of the caps home. I wore one out and changed in the car after 30 minutes, but caps were not -32 to start with, maybe -23. I finished rest of caps at home from my regular freezer probably only -7 or -8 celcius. I used them Sat. Night again for 2 hours,changing every 30 minutes, but of course they are not that cold. I don't know of this is going to work because only 2 of the caps were actually cold enough. My husband checked all the shelves inside the freezer with the infrared thermometer and the were reading in the mid to low -20's celcius.
I told Sarah of the problem and her answer was, "That's not my responsibility,"(Barbara was not there on Friday, she was off.) I told Sarah that was not a satisfactory response and she should find out who is resposible and have that person take care of the problem. I will send an e-mail to Dr. Moore next . I will also remind her on Monday morning when I get my shot. Any one who has to do the caps this week should be made aware of the problem and keep on top of it.
Nancy
0 -
Keeppositive:
My friend had the same problem at Beaumont in Michigan. The freezer is broken and not keeping the temperature it needs to be. She ended up having to get dry ice, took 3 caps home the day before (luckily she works close to hospital) and put them on ice in the morning in a cooler and then we would put caps from freezer in the cooler as we took one out to use. We were able to do that all day and got them to the right temperature. Not sure if you can take caps home in order to do that or just get there earlier than you need to so they have an hour or more on the dry ice.
Unfortunately, some hospitals that have the freezers seem to not care about maintaining them. Since it's not a medical thing, they just don't care. Awful. I'm sorry for your ordeal.
0 -
Sorry your first chemo was so difficult. I don't know about the freezers because I had to hassle with the dry ice. Seems to me that the extended times you endured in the caps should offset some of the temperature problems. Keep the faith and hopefully all your hair will hang in there. The previous reply of mixing the freezer caps and some on dry ice may be your answer also. I'm not suprised by the nurses response. They feel they have enough to deal with without us cap girls.
The flushing for me was due to Dexamthasone, one of the anti-nausea drugs. My friends all thought I looked healthiest right after chemo because of the glow of my face and chest. Enjoy your glow and good luck working out the details with the hospital.
0 -
A variety of comments and tips:
For the gal worried about the snowstorm and dry ice.. if you have a really good cooler.. a COLEMAN extreme.. it WILL keep the ice for DAYS, if closed. Don't let that snowstorm put you out.. get the ice in advance or cancel your infusion! This is worth it.
It is VERY disconcerting to read of the freezer failures. Having control over this situation is really the best thing ,and at least with dry ice, this is the case. In my opinion no one should rely on the freezers alone, and should and bring at least one small cooler with dry ice that can fit say 2 or 3 caps in ziplocks. Then you KNOW you will be safe. The caps freeze SO quickly that way, that it will always put your mind at ease. Plus, having chunks of ice allows you to differentially cool areas of the cap that require it before putting it on. We did this constantly.
It is highly unlikely that scalpcooling can affect chemo brain, which in and of itself is debatable. Think of the myriad factors that could produce some fogginess and it is darn hard to isolate to a chemo effect. I did not experience it... fought this crap all the way.. but my advice is stay active and focused and hydrated and healthy.. and betcha that supposed effect will be quite diminished or absent.
Neulasta is tough. i have heard that claritin is a magic bullet for it.
Personally, i recommend NOT doing neulasta unless you truly have a wbc problem after 2 or 3 cycles. the levels generally come up on their own and this exta drug is just that.. more extra poison for the convenience of the medical system, not necessarily for the patient. Also, they do not titrate the dose for size.. it is a one size fits all. That in itself is highly susepct. As a 5 foot tall, 90 pound person, i was shocked learning i had been given the same dose as someone many times my size. And yes, the SEs ARE nasty. My opinion is a strong one, as i experienced neulasta ONCE, and denied it thereafter.
DON'T GET CONSTIPATED: use fibergels, colace, prune juice or a little cup of Yogi Get Regular tea. (not all of them!!)
The rotten mouth taste starts days after the infusion. THe SMART MOUTH 2-solution mouthwash is great at eradicating that.
OK, those are some tips for today!
0 -
Hi all,
Re: Neulasta: I had absolutely no SEs from this whatsoever. I had my chemo during a very bad hay fever season, so was already taking Claritin -- and it is the drug my RNs recommended to counteract any bone pain. My blood counts stayed normal throughout my entire chemo treatment (4TC@3). I suggest taking the Claritin the day before, and tylenol as you need for any discomfort you have.
My tastebuds went nuts during my first infusion, and the awful taste stayed til about 3 weeks PC. My nurses swore by gargling with baking soda but it wasn't enough, and I ended up using Biotene mouth rinse several times a day. I never got mouth sores, but did get dry mouth. Biotene helped the dryness but not the taste. If I had to pick the #1 SE which affected me, it was the taste. I was on a bland diet throughout -- rice, toast, bananas, chicken, apples/apple juice etc. Hard to not be able to have any uncooked fruits or vegetables -- I missed this year's berry crop but now can't wait til this year's. As a foodie and cook, I learned to make my food interesting using the limited menu available to me. I turned it into a fun challenge.
Sharing caps: I overlapped with another woman; her treatment was starting just a week after my third, so handed off the caps a couple of times before they finally ended up with her. We were able to share the same gear (which I'd inherited from another user on this list), too. We both work in hospitals so used Saniwipes to disinfect the caps between sharing. We did go over the caps each handoff, to see if any new seam splits had occurred. (We had the older style caps and were the 3rd and 4th users of them, so they were showing their dry ice fatigue.) We each had a few cap 'failures' due to fatigue of the plastic, and Frank replaced the caps immediately. He was fantastic in looking out for us.
Shocking! to hear about the lack of maintenance in the freezers! My fingers are crossed that this doesn't change your results. Keeping some spare dry ice handy sounds like a must, even for those with hospitals lucky enough to have the freezers.
Susan
0 -
HI All,
Applying the same principle that underlies use of the cold caps,I sucked or chewed ice before, during, and after each chemo treatment I received (after the first one); if I had a cold cap on, I tried to have ice in my mouth. The ice in my mouth clearly helped prevent mouth sores and alteration of my taste buds. It didn't entirely eradicate these problems, but it helped. Eating / sucking popsicles would also help, I bet. Of course, my trusty electric blanket was essential throughout this process. Mighty cold! Still, the side-effects to my mouth were way better after chewing ice than the first time when I didn't do so.
I'm now 7 weeks after my final chemo session. The hair on my head is clearly growing a lot faster than it was during chemo. I wear my hair short and it was looking mighty shaggy. I got it cut last week (by a careful and understanding hair dresser, who didn't wash my hair before he cut it - he just spritzed it -- and who let my hair dry naturally rather than using a blow dryer). It looks so much better!
Best wishes,
Katherine
0 -
Hi Katherine - HOW EXCITING to here that you are 7 weeks beyond chemo! Congratulations!
0 -
Yeah Katherine!!!
Have you heard anything about the Washington Post article?
Do you know if it will be next week?
Thanks.
0 -
Ok, I figured out how to post a photo, these are the befores.
Well I didn't start chemo on the 5th as planned. Had to get a CT scan to check a shadow that showed up on my chest x-ray. If the CT is clear then I will start chemo on the 12th. Did to a trial run with the caps at the correct temp. I noticed the pain stops after about 5 mins so I don't think I'll take any tylenol.
I like the penguin pin idea A LOT. I would definitely wear one. I collect all things penguin anyway so this is right up my alley.
Thanks to those who posted hair styling tips. Good to know the things I'm thinking of trying have been tried and work.
0 -
OK... starting chemo next Tuesday, Jan 18 and just read all about cold caps. Is it too late to get some? I will call my doctor's office tomorrow to see if they have them or a freezer, but if not, how long would it take to get them from Penguin? I am not liking what I read about 6% not getting regrowth. I am only 47, actually turning 48 on my first chemo day, so that would be way too long to be hairless if it never returned.
0 -
Ang, The Washington Post story on the cold caps is scheduled to appear on the front of the Washington Post's Health section this Tuesday, Jan 11. I hope folks have a positive reaction to it. The first sentence is something like, "It's going to be a cold day in hell so my friend Katherine dresses for the weather."
Bdavis: I believe that chances are good that you can get the cold caps by Jan 18th, but it's VERY unlikely that your doctor will have the caps or a freezer. (In a few years, that may be the case, but the caps are far from routine right now...) The thing to do is to contact (email) Penguin Cold Caps ASAP. You'll need to provide them (Frank Fronda) with information about your hair and your chemo regimen, and he will provide instructions. You'll then enter a rental agreement with the company. You'll need to get dry ice and learn the technicalities of this process, and you'll need two friends or loved ones to help you with the caps during each chemo session. (It can be done with one extra person, but it's a tricky process.) And you'll need supplies like ice chests, a an infrared thermometer, etc. So, you'll want to use this week to read up on all this on the Penguin Cold Caps website, plus this discussion chain. I also strongly recommend doing a dry run -- before your first day of chemo -- with the caps and the dry ice. The caps are very different to use when they're frozen to the correct temperature vs. just at room temp. Good luck with all this! It's a cumbersome process that gets easier and easier and is really worth it in the long run.
Katherine
0 -
bdavis: send me an email at sebm9@earthlink.net and I can email you my writeup on how to get started, using dry ice, and other tips. Good luck!
Susan
0 -
bdavis
If you would like my instructional flyer about cold caps use, hair care, etc, and information about ameliorating most side effects, please pm me,and include or regular email address. I'll send via attachments right away. These complement Susan's excellent materials.
0 -
Folks, i just discovered the apps.komen.org site where some people are discussing cold caps as if it were a myth. I just posted the penguin site url and this board's url as well.
Very surprised that the komen site was startlingly deficient inthis area. Of course, other areas of bc.org seem unaware of the caps also. Why is this?
0 -
mtri1111--IA question posed from one of the infusion RN's: If your hair is based on 21 days---(if you keep it post first chemo , Frank's base line) Do you have to count 21 days post each subsequent tx?? Or are you in a safer zone if you retain--after the first 21 days post first chemo infusion?
0 -
MT~ Thanks for the information... trying to find the Komen thread as I think it is so important to to share the success of PCCs. Its amazing to me and I think all of us the "urban legend" nature of this treatment. It should be a standard choice for all women (& men & children for that matter) to minimize or prevent hair loss due to chemotherapy -- where and when you can.
Sashaz3~ My understanding in talking with Frank Fronda and others is that each treatment is its own "zap" to your hair follicles -- but if it works through the first treatment it is going to work for you. Frank did say to me they are not sure why some individuals it doesn't work as well.. diet, other chronic issues, aluminum, metabolism etc... We should ask him or the company...
Day 60!! for me... hair is much thinner.. (looks like it is mostly at the crown of my head where I don't have a strap so going to try to make sure I tighten there this tx... but my hair still looks decent. The shedding slowed and pretty much stopped last Tuesday. My worst shedding seems to be 5-11 days post infusion. My brother-in-law told me this weekend that he is shocked at how much my hair has grown through chemo.... that to me is a huge thing as it shows the follicles are still active ... but the roots are killing me.... I keep thinking I'm in the home stretch.....
Can't wait to see the Washington Post article!
0 -
Can anyone help me with this question.....after my first chemo treatment with the cold caps I believe that I was burned at the part of my hair and near my bangs (I was told to keep the cold caps on 4 hours after the chemo ended). My hair has thinned somewhat all over but I know have a definate bald spot in front where I was burned by the extreme cold. My scalp did not blister but was red and sore, and later itched and felt thick where it was burned. Has anyone else experienced this and did your hair grow back?
0 -
Lovehorses~ I too had major scalp "freeze". And sounds like similar soreness, redness and "thickening" -- I left it alone even though everything in me wanted to peel it off and/or pick at it... it slowly peeled by itself in big chunks... and now is pretty much normal.. still get flaking but not like the first treatment. My crown was reallly bad and that is where I have the most thinning.. but wouldn't say bald spot. I'm not done yet so not sure how that will grow back...0
-
Each cycle is unto itself a new round of battle with the chemo. However, if the caps worked for round 1, they WILL work for subsequent rounds. that is the sigh of relief part. the shedding does NOT help with confidence and will be anggravation throughout. But.. it will just be a steadystate..we all experienced it.. and in the end eventhinner ahir is a gra eat deal. clip it up, use colormark liberally for roots, and boy starting from a baseline with a reasonably full head of hair is FANTASTIC. Am preaching to the choir here.
btw, 9 months after my last tx, my thinned hair is thicker than it ever was from even BEFORE the tx began.
0 -
steph - you not only figured out how to post photos - you figured out how to post a slide show. That is so cool! Good luck on the 12th!
And by the way....love the idea of the penguin charms!
mtri111 - that's so great that your hair is better than before.
0 -
Hey bdavis,
Where are you located? I've finished with my caps and have not shipped them back yet. I am located in the San Francisco area and could forward you my caps (with Penguins OK). E-mail me.
0 -
I called my oncologist and about the cold caps, the taxotere and possible options. He said he doesn't think the cold cap is a good idea because as it may work to an extent it isn't the answer... and more importantly, he said then the chemo isn't getting to my scalp, negating part of its purpose. He also said he has had 2 patients on taxotere who have had no hair regrowth out of 1000s of patients, so he feels the statistics are low, but understands my concern... he offered up Taxol as an alternative, but said that neurapathy was more prevalent in Taxol and a higher percentage of patients will suffer from permanent neurapathy with Taxol than permanent hair loss with taxotere... Now its my choice. What to do??
0 -
"He has had 2 patients on taxotere who have had no hair regrowth."
I am wondering if those patients had a CHOICE in that happening...
0 -
Sorry bdavis~
I should have added that my oncologist researched the heck out of the Penguin Cold Caps for me and even though she had never had anyone use them, she felt confident with me using them as her first patient to do so...
Best of luck with your decision...
0 -
bdavis,
The scalp is a very unlikely spot for the cancer to decide to grow. I'm willing to take that risk. Did you ask you oncologist if he or she has ever known a patient to get scalp cancer? Bet not! Your oncologist, like most, considers losing your hair as only a side effect. No regrowth isn't really the only issue. How do you want to feel during your treatments. Women who retain their hair are more active and have a better attitude about what is happening to them because they are retaining at least a little control over things. You'll need help with the caps and having support people around you during and after on treatment day is a wonderful side benefit. Also consider how you'll feel when treatments are over and you want to move on with your life. Since it takes many months to get enough hair to style, how will you feel looking in the mirror at the cancer woman instead of the woman who is more able to move on. Go with the best treatment against your cancer and then decide about your hair. Be in control, ask more questions, make the decision that is right for you.
0 -
Hi
What is the prices you have paid for dry ice? We are being quoted 1.79 lb. I look forward to hearing from you
0 -
I am wondering about the placement of the caps in the cooler with the dry ice. Once in the ziplock bags are they numbered? Do you use the bottom first and then return it to the top of the stack letting it work its way down until you use it again? I was told 2 1/2 hours put caps on dry ice before use..does that hold true with the ziploc bags storage as opposed to Penguins containers? I look forward to hearing from you.
0 -
My husband is an engineer and overdoes everything. We used four separate coolers, two for the clinic and two for home, so we probably needed more because of that. Anyways, we purchased eighty pounds of dry ice. We got it at 7:30 am. It comes in sheets and it is easily broken into quarters with just a tap on a step. We placed the pieces into ziplock bags to make things easier to handle and move around in the coolers. My chemo was at 1:30 and sometimes a few were just barely cold enough. If time is an isssue get the dry ice the night before. As far as I know the caps must be in the keep boxes or the caps will be destroyed. They must not come in direct contact with the dry ice. Since dry ice evaporation is heavier than air it moves downward, so most of it should be on the top of the cooler. Take note that you should crack window in the car because CO2 can replace some of your oxygen in a closed space. We used masking tape to seal the coolers and the same tape can mark the boxes of the caps as you use them. Fill the coolers with towels or such to replace any air. The caps get colder that way.
Hope that helps.
0
