Cold Caps Users Past and Present, to Save Hair
Comments
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Right now I only have a 56 coler need to get a largr one as well--I am still trying to figure out the sequence--when do you apply the first cap? how long--then you start every 30 minutes--did you exchange your caps on your ride too ( I have a 45 min trip?) I have a place for the dry ice pick up--I have heard I can get it the night before--maybe I'll get 80-90 lbs--this placeonly sells the brick form--I will label the boxes good idea with the tape thanks!!!!
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sashasz3
If you get the brick form of ice, use a hammer and break it up into as small of pieces as you can. I did it that way for a friend and the caps seemed to be colder with smaller pieces of dry ice than when we placed the slabs in the cooler and didn't break. It's crucial to get all the sides covered. I call it burying the caps. Make sure they are buried. ha.
You should have been given directions on your protocol. Mine is first 2 caps for 20 minutes, 3rd cap for half hour, but 10 minutes of the 30 is pre-chemo. It translates to needing 50 minutes before chemo starts. After that it's a cap every half hour until 4 hours after chemo is done. I think most of us have the same routine, but check with what Frank or your Rep tells you to do.
Don't be afraid to tell the nurses that you need time. Your premeds should take up most of the 50 minutes, but sometimes I need them to wait, so we just flag them when it's a few minutes from being time and then they start the chemo drip. With me they to T, C then H. Some get Herceptin first.
I'll stop rambling on the discussion board... private message me if you need more help. I was never so anxiety ridden in my life as before the first chemo. The caps caused me so much stress I thought it was going to kill me! It gets better after the first time because you figure out a routine. Anything you need to know please ask.
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sashasz3,
Regarding the drive back, yes you need to keep changing. I had a 40 min commute and between loading and unloading the car I had to do 2 cap changes before getting home. That's why I would recommend having at least 2 helpers if you need to change during the drive: one drives, the other preps the caps.
And ditto on the 1st chemo anxiety. Its definitely the worse. I took an Ativan the night before the first chemo. Never needed one afterwards. Your caps will keep you busy and entertained. I still laugh when I think of the crazy drive home and stopping on the side of a busy road to change caps.
To those of you in cooler climates, remember to dress extra warm because once you get outside with those caps it can get pretty cold.
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Thanks girls--just reading over older posts--can't say I see anyone happy with using 8 caps--I am scared!! I will diffenataly maxiumize the dry ice--this is quite the investment --I really want to be a success story! I'll be the first person at my infusion cite to do the caps---so I want to do all I can to be one of the sucess storys!!
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sashasz3
You can do it! If I can make 10 work and re-use, you should be able to do it with 8. Plenty of dry ice will be key.
As for driving home with caps on, I stay at the hospital. The first time we drove home and didn't stop to change, so I had a cap on for 45 minutes. Then doing the caps at home actually annoyed me. I wanted to be done. So, after that we decided to stay at the hospital, just move out to the lobby area when the nurses are ready to close up shop. For me it was a mental thing and felt better finishing it all there rather than bringing it to my home. Not sure if that's something to consider for you.
I too am the only one at my hospital. They have all been watching me and my Doc has become a believer. I've got one more treatment to go and my hair is still with me!
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Hi,
I find it interesting (and a good thing) that 8 caps are being viewed as adequate. Not only will the rental charge be much less for 8 rather than 14 caps, but dragging around 14 caps was a p-i-t-a and required two coolers and 100 pounds of dry ice. 8 caps should fit in one large cooler (on wheels) and you shouldn't need so much dry ice either. The anxiety on doing the caps the first time is very extreme, but after you get through about the 4th caps, it is no big deal. It is easier with each time.
Colleen
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I have been helping women using 8 caps. I always use 2 coolers and 90-100 lbs of dry ice. One is a square shaped Igloo Ice cube 60 qt. which fits 4 caps. I used a Coleman Extreme 75 qt, which is also square shaped. I liked the size better than the 60 qt. because I can fit more ice around the sides of the boxed caps. Insulate bottom of cooler using @ 1/2 inch of styrofoam, pieces of cardboard or a towel. Place in bottom of cooler to cover entire bottom of cooler. I put the already bagged ice into a 2 1/2 gallon hefty bag for easier handling. Do NOT close bag. Break the ice into chunks while in the bag. Place in bottom of cooler to cover the base completely. Put 2 or 3 boxes containing caps on top of ice. Use 1/2 bag of crushed ice to put between boxes and sides of cooler. Repeat. Be sure to cover top of caps with ice because COLD SINKS. I use solid block ice on top and chunks if there is remaining ice. If there is any remaining room cover with a towel. Number cap boxes with masking tape and sharpie or permanent marker pen 1-8. 1&2 and 3&4 are at the bottom of the coolers. 5&6 and 7&8 sit utop them. Use caps in that order. When finished with the first use of cap 1 place it back in the bottom of cooler. When finished with cap 2 remove cap 3 from bottom of cooler and put cap 2 in it's place. After cap 3 has been used I place it where cap 2 originally was-bottom of Cooler 1. This allows an additional 1/2 hour of cold time w/o raising the temperature by adding a warmed cap. It's easier to draw a diagram than it is to explain it. After using caps 1-4. the layout for the bottom of the coolers would be 1&3 and 2&4 at the bottom of the coolers. This method has worked for me. If you need a diagram I can email it to you. Send me a private message with your email and I will email it to you.
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sashasz3~
I am one of the people that had a problem with 8 caps -- but just finished my second treatement Thursday and we got by on 9. I too think it is great if 8 caps work -- makes it easier to carry and more women can use them too! I know Frank wants the caps to stay in the "keeper" boxes in the ice - however it was difficult to get the caps cold again in the 4 hours using 8 -- so my helpers came up with a system that worked for us. If you buy the 2 gallon freezer ziplocs - you can use two to totally cover the caps laying them flatter -- and make sure they are protected. It took about 45 minutes to get the caps back to -35C if placed on top of the cooler in the ziplocs protectred also by a thin towel. We did this with two caps only to make sure we had one cold enough for each change - just in case (the girl scout in me -- prepared for an emergency:-)
You CAN DO it -- first time is stressful - by the second time it's much easier. I did go home during the caps this time -- we did a road side change -- I did have two helpers and if you are going to drive would also suggest this. But I agree with Michon -- once I got home all I wanted to do was go to bed.. and may stay at the center next time.
On a positive note -- I'm at Day 23 post first chemo and have shed - lost little hair.... still wakeup every morning worrying ... and know I'll probably shed more in a week or two but so far so good! This time at the center I had about 5-6 nurses come in and talk to me about the protocol and what we were doing .. most amazed I still had all my hair for Tx#2. I am so thankful for finding the Penguin Cold Caps and hope it keeps growing & growing for other women as a choice.
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Thanks again for the updates---I am getting really nervous about this just trying to iron out all the fine details -the best we can --going to do a trail run---the bag idea sounds great--thank you all so much for being here--I am sure you touch so many--You have definately touched me!!
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hello girls, I have 14 caps and everything else now ready to go, im in Northern calif and willing to travel, if anyone needs them let me know
I hope you all are doing well
love Chey
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Hi everyone! Haven't been around in a while. I feel like there is a whole new generation of cap users and protocol. Very interesting to hear about the 8 caps. I guess after word got out the supply of caps wasn't enough to handle the demand. I never used 14 caps. I thought that was way too much and I think most people would agree. I guess it does depend on how much dry ice you have and the quality of the cooler how quickly your caps will refreeze. Since I was one of the earlier users I always used the 2 gallon ziplocs so I never had trouble with refreezing however I did have broken cap issues because users before me also used the ziplocs so I completely understand Frank's concern about that. I think Lmflynn's idea sounds like a really good compromise.
I'm also wondering how those elasto gels ended up working out.
Chey - nice to hear from you. How exciting is it when the caps are all packed and ready to go!!! I hope you are feeling and doing well!!
Ditah
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Congrats on finishing with some of your tx--overall how did you make out with the caps--I have my caps--waiting to get my first tx date--go today for my oncology visit--scared to death, I must admit!! Only recieved 8--the new regimen--everyone has given me tips on the best way to keep um cold!
Sharon
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Hi Everyone,
Can anyone tell me how to buy or purchase the cold caps? I am going to start chemo soon and would really like to give it a try. Can anyone help me?
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Lovehorses- Here is the link to the Penguin Cold Cap website:
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Hi All,
I haven't been on here in ages and like Drim said, it seems like a whole new group of users. It's so great to see that the word is getting out! I used the PCC's for 4 TC treatments this summer. I finished July 9th with very minimal shedding. My scalp was sore after each treatment, but I did not get scabs. I didn't lose any clumps, I'd say the thinning was pretty even overall for me, and fortunately it was not bad at all. I think my hair felt thinner, but you could not tell by looking at me. Someone was asking about hair care post chemo. I waited until the end of August to cut my hair and I highlighted it at the end of October. I am going in for my Christmas highlights this week! Honestly, I am back to all my normal hair care, except while I rinse daily, I have not gone back to washing everyday or conditioning too often as I think less actually works better for my thin, straight hair. I know you are not supposed to do so, but I blow-dried my hair on the Cool setting all through chemo and it was fine. I also used a leave in conditioner daily during chemo. I used the Ojan spray on conditioner to help with the dryness. I started drying my hair on the warm setting at the end of August (21 days post final chemo) and by October was back to all my normal styling tricks. My shedding has been back to normal since about October, I'd say.
Drim and Susan, hope all is well with you!
Chey- congrats on finishing! And for sticking with it; you had a tough treatment schedule!
To all the new Penguinista's (love that name, Susan), welcome and good luck!
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Drim and GolferGirl ~ So glad you checked back in! Reading old posts of yours (and others - Susan, Chey, NewBride, Geri, JPMercy, etc.... ) were the reason I tried the PCCs. Your successes and feedback have meant the world to me while going through the anxiety of the first chemo and the "countdown" to see if they worked for me. I am 4 days post 2nd TC x4 (Day 25)chemo (HALF WAY DONE!!! - and feel really tired but SEs minimal) and have had a little sheddinng - when do you stop counting days???? had the most today -- but then I have barely combed and haven't washed my hair since last Tuesday
... and finally washed today -- so don't think it was more than I would "normally" I do have thin hair and have some scabbing -- but I'll take that any day! I love being a Penguinista! Still have anxiety -- but I have officially step back from the ledge!!!!
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I am going to call Frank and find out more about the Cold Caps before i start chemo. However, I am reading about these big coolers and 60 pounds of dry ice.....how many people does it take to carry them? I won't really have any helpers but I was thinking about hiring my friend's nanny who is looking for work to help me on the day of chemo. Can myself and one other person do the caps on chemo day?
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Cat123
I use 2 50 quart coolers that hold 5 caps each. You may be able to fit 4 each in smaller coolers. I had my other 4 in a 36 quart, but I don't bring the 4 with me any more, I found we could re-use which looks like Frank has found out too since they are only sending out 8. I've been able to handle the coolers on my own since they have wheels. Getting them in and out of the car is a bit hard, but can be done alone. My friends meet me there and help unload and load, but at home I have to get them out and carry them up a flight of stairs!
Putting the caps on can be done by one person, but it's much better with 2. You will only be able to hold on to the top and or the chin strap to keep it from sliding. You will be reacting to the cold on your head, plus chemo, so you may start shaking. I had the shakes, but not so horrible that I couldn't hold on to the cap. My friend is another story, her hand shakes out of control so she can't really hold on to anything. (I've been helping a friend do the caps, crazy that we were diagnosed within a month of each other!)
Don't let me scare you, just want you to be prepared. I suggest if you have one helper, that you practice a bunch before. Practice with them not cold at first to get the hang of it. Watch the video on the cold cap site to see how it goes on.
I was determined to make it work and I have 5 out of 6 chemos done now, # 6 next week! I've been able to get the dry ice, load the coolers and everything to do with prep by myself. It's hard and I wish I had someone, but it can be done! Having my hair makes it all worth it!
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Well gang I have the date it is Thursday--I start the chemo--give it to me one more time--They are dong pre-meds--t-c-h--Do I use the caps for the h session---?? Can I count that as the post time? that one is the longest for me? 90 minutes--I have everyting but don't feel really ready or prepped I am the first in my infusion center--my nurse that I meant today says-"DON"T BE DISAPPOINTED HUN"---I want to blow her out of the water and come with hair each and every session!!
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Hi Cat123, My coolers were on wheels, so maneuvering them, even filled, was quite easy. I was able to lift them in/out of the car myself (though easier with a second person to help). My cancer center had valet parking, and the valets were quite nice about lifting the coolers for me as a courtesy. I strongly recommend a helper to help with the caps on infusion day, however, even if hiring someone. It will be some of the best money you ever spend, but is too much for you to do alone. The work the helpers do is enormous! Timing the caps, prepping them, securing them on your head (you can't do that yourself). In Europe, the nurses put the caps on for you, but I think we're a ways from that in the US....
Lmflynn: you can OFFICIALLY step back from the ledge. Frank always says, once you've reached Day 21 with hair, the caps are working. You should have a celebratory ceremony of some sort, acknowledging that you've been to the edge and looked and aren't going down it, and then take a deep breath and a step back, and another deep breath and another step back. Before you know it, that ledge will be a distant horizon and a symbol of a path you did NOT take, the path of fear. You will shed -- yes, it is worst on the days you wash -- but remember that's a week's worth of washing/combing all saved up. If it helps -- and it won't :-) -- my anxiety about losing my hair continued months post-chemo! Once I was finally able to have a warm hairwash again, things finally seemed right in the world. I love me a nice hot shower :-). No doubt some of the stress was displaced cancer anxiety. No matter, it was absolutely worth it!
For those of you facing additional adjuvant treatment such as radiation or tamoxifen, both those steps have been a breeze for me.
Chey: love your new picture -- when was it taken? you look fantastic! You are a rock star girl! :-)
Cheers to everyone,
Susan
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sashasz - congrats on getting a date. You are one step closer to being done. You can count the herceptin as post time. It's good that they are giving that to you last. Sometimes they like to do it first but since it's post time for us penguinistas it's better if they do it last. I didn't do TCH but for me, the first H was 90 min, then the next time it was 60 min, then 30 thereafter. The chemo times also got shorter - 90 min each on the first day and then 60 min each thereafter. My premeds were close to an hour so I started my caps after they started the premeds.
golfergirl - always so great to hear from you.
chey - I meant to say that the other day that your picture looks really nice.
Michcon - you're doing great. One more to go is fantastic!!
I can't believe how very fortunate I was to have my brother-in-law (sanitation guy) help with this. I never lifted a finger or touched any of the dry ice. He took care of all that stuff and my mom did the rest. I just had to sit there. I definitely recommend two helpers. There is so much to do.
Did I tell you guys that my chemo center has a freezer now. I saw it the last time I was there. It's huge! They've actually had a freezer for a long time but just got the proper electrical hookup a few weeks ago. They got the freezer from the Rapuzel Project. Just seems so much easier than the ice.
Pleasant dreams.
Ditah
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sashasz3~ You will do GREAT! You are about 1 treatment behind me and I'm one behind zlota so we will be able to get through this together. If you've read past experiences the first cap can be a doozy ... it is the only time I thought I won't be able to do this.... but 5 minutes -- I swear it's only 5 minutes and then you are off and rolling and you won't look back. I have to say I asked my onc nurse and I took a vicodin. I'm allergic to advil so I do think it helped...
Michon - I forgot to mention you in my last post -- but WAY TO GO -- only one more left! Can't believe it (but sure you can:-) !! b/c I've been reading your posts since you decided to try the PCCs.
Drim~ Yahoo on the freezer! Wouldn't it have made this process so much easier if our helpers could just go to the freezer and get our next cap!!!! I'm trying really really hard to get my Oncologist to support doing it here. I'm going to PM you a question about it...
Day 26 (still counting....) all is good. Shedding more than I have through all this but not tons...
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I consider this my "home thread" so I am bragging. I finished my last radiation treatment (#33) about an hour ago. So this is the END of my cancer treatments. I did chemo last July - Sept with the caps and kept my hair. The chemo shrunk the tumor enough so I had a lumpectomy; thus I kept my breast. The 33 radiation treatments caused fatigue (I'm ready for my afternoon nap), but no peeling or blistering.
I am looking forward to the holidays. I'll be back teaching in January and back competing in dog shows in a few weeks. It is time to move on.....
Colleen
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Wow what a mile stone!!! Congrats----My journey is just begining on Thursday----Got every thing --just need to show up!!!
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Colleen -- WAHOO!!! Congrats... that is a long road and one you have now completed. Have a great day!!
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Yea Colleen!!!
I have been keeping tabs on you throughout...that is so awesome.
Great that you do dog shows. My teens help out with dog rescue and we hold dogs each Friday night. ( Notice I said "we" - I get roped into holding a dog somehow...)
Keep on moving on...
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Congrats Colleen!!! I'm very excited for you. You did fabulous!!!
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Hello to all..... great to be joining this thread. I had my first of 4 TC sessions 2 days ago and am using the penguin cold caps. 8 caps in all. 2 coolers on dry ice. The chemo infusion went very well. No issues or side effects so far 2 days out. I am hopeful the caps will work for me. Following Frank's instructions exactly, rotating the caps through twice. Although very labor intensive in getting everything together and getting the caps ready, on correctly etc, my husband was great in preparing each one and putting them on me, organizing and returning them to the coolers on dry ice and preparing for the next cap. I think it made the infusion time go by so much faster as we were so focused on the caps and getting the next one to the correct temperature and ready that the time seemed to fly by.
I did have one cap rip at the seams that needs to be replaced probably because it was so cold initially when taken out of the cooler on dry ice. Has anyone else had this issue? Thanks
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mje123~ Welcome! your DH must be great -- I needed two helpers and they were exhausted after both sessions. But it is actually an exciting process and helps to keep your mind on something other than the infusion and you have this great support with you.
I did have one cap tear as well at the seam. When I mentioned it was told a few do this -- believe they have made the seams stronger in later models. I think the dry ice is really hard on the caps -- it seems if you just take the box out of the dry ice and let it sit for about 30 minutes it makes it more pliable -- more things for your helper to worry about:-)
Keep us up to date on how it goes -- you'll probably have anxiety going into Day 14-19 where most people lose their hair... I know I did ~ but I'm at Day 27 and while yesterday I did shed (I'm collecting every hair in a ziploc sinnce Day 1 -- I think I got that tip from Susan -- so I can look at it and realize its still only about what I used too take out of my brush every few days and it's been almost 4 weeks) - I still have a full head of hair (a little dry and flaky -- but it's all there!)
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Lmflynn,
That is so great and exciting that you have all your hair at week 4!!! Keep up the great work. I am sure that I will be nervous going into the third week. So far I have done everything by the book/instructions etc so hopefully it will work for me.
Is anyone using the caps in between treatments? I have not heard about this but was not sure if anyone was doing it or if it was beneficial
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