Cold Caps Users Past and Present, to Save Hair
Comments
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Curly, I haven't practiced yet. My caps are due to arrive on Tuesday. Still lots of practice time.
Thanks for the dry ice tip. I phoned a place near me and when he heard what I was using it for, and that I'd be back 7 more times, he offered it to me for $40 instead of $110. Would it be cheeky to ask to return the unused portion too? lol
Did you buy special coolers for it or did you go with whatever you had?
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Chin strap tip - I put a bandana folded lengthwise between the strap and my chin - much more comfy and less cold. I also loosened it slightly after we got all of the other straps really tight. Otherwise, it was just TOO uncomfortable. However, I made sure all the other straps were super tight by tilting my head forward - no movement of the cap - ok to loosen the chin strap a bit. I think I saw that on one of the videos? Memory is a bit foggy here. Worked for me. I shed of course, like everyone, but no one could tell I had had chemo. I lost hair at the nape of my neck b/c of not having the gel straps, but my long hair covers it. The regrowth is about 3" or so now and curly as ever under my poker straight hair. Too funny.
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Shipsgirl, what a fantastic deal on the ice! Good for you! My guy gave me the wholesale rate instead of the retail rate, but not nearly as good as what you are paying. My ice guy told me to get Coleman coolers because they were made of proper material to store dry ice and the lids don't lock, which allows the gas to escape as needed. I am sure that's not the only acceptable brand, but i went with it. Oddly, one of the inserts in the coleman said in one place, don't use with dry ice, and in another place, said dry ice was fine as long as it didn't come in direct contact with the cooler. Well, it did come in direct contact with the ice and it was just fine. Make sure to buy coolers with wheels on the bottom to make sure you/your helpers can transport the ice with ease. I can't imagine not having wheels. They were heavy!
Dancetrancer - thanks for chiming in on the chin strap. You are correct - Geralyn does say you can loosen the strap. I tried it but felt like it loosened the cap near the sides of my head and tried tilting my head forward and felt like it just loosened the cap. That made me nervous, so I kept the chin strap on. I did put a soft cloth under the strap so it didn't cut into my chin, but tight, none-the-less. So happy to hear about your hair.
xo
curly
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During our cap practice yesterday, we were using caps from my freezer. I noticed that the temperature varied depending on which part of the cap we tested. Even after kneading the cap, there was a 2-3 degree difference from one section of the cap to another. I guess we will find the same variation when using dry ice. Is this common and if so, how do you decide which is the most accurate reading? I'm thinking that we will use the temperature reading from the middle of the cap. Anyone have experience with this?
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Jc254,
That's what my DH does. He checks them in the middle and if its the right temperature the cap goes on.0 -
I have a question about gel bands. I won't receive the bands until tomorrow so we weren't able to practice with them. I definitely need the bands since the bottom of the cap does not reach my hairline. Geralyn's instructions say to place the gel band at the bottom of the cap, but that won't solve the problem. Did anyone place them below the cap? I haven't seen them yet so I not sure how they could be fastened.
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They are long strips about 2 inches wide. You attach them to the top front of the cap after wrapping them along base of the cap at the back neckline and going over ears and temples. They do not really get cold enough to reach the -34 degree temperature. This is where I lost lots of my hair initially, at the neck nape , temple and behind the ear. I think someone mentioned a video showing them on the penguin caps website.
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jc - the bands go over the exposed hair below the cap just as you suspected, and it is what Geralyn meant by the "bottom" of the cap. They are snugged up against the bottom edge of the caps to create an expanded area of coverage. They saved the parts of my hair that didn't fit under the caps. I didn't lose any thanks to the bands.
Good luck!
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How long does it take the dry ice to get the caps to the right temperature? My chemo is at 4pm on Thursday and I wonder if I should put them on dry ice on Wednesday night or Thursday morning.
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Ships girl, I can't answer the dry ice question as I was blessed to have the use of a medical freezer at my facility. But my goodness, you are going to have a long night starting chemo at 4 p.m.! Unless you and your helpers are night owls, try to get earlier appointments for your other treatments! My chemo infusion (taxol) generally took only an hour, and I was still at the infusion center basically from 8:30 to 3:30 each time.
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Shipsgirl, Geralyn advises not to leave the caps in over night as this could damage them. She says she has told everyone to leave the caps in ice for 3 hours in advance, but 2.5 hours is all you need. I was wary my first time re: only 3 hours, but also knew that things at the hospital are typically delayed, so I put the caps in ice at 6am and I was to be at the hospital for 8am. They didn't end up starting infusion till about 10 am or 10:30. The first caps we took out were at -45 degrees, so I think 3 hours is probably plenty of time. They warm up very quickly from kneeding, so don't worry if they are too cold. You can also use your electric blanket to warm them up. We had a few hiccups with some of the caps later in the day not being as cold as I needed, but it seems to have worked because...today is day 21 and I still have hair! yay!
Shedding has definitely started and it is nerve wracking. Hairs on my sweater, hairs on my coat, hairs on my scrunchie (loosely holding my hair back), but no one but me knows this right now, other than my hair is not nearly as styled as usual. From what I can tell, there would be no hair by today if the caps didn't work. No guarantees and who knows what lies ahead, but today I have hair and I am so grateful.
yesterday, I had to get a picc line put in. The nurse looked at me and asked what for! I told her...she looked at me again, and asked when do I start! i said I already started, round 2 is tomorrow! She looked again and didn't say anything. Then I met my nurse who cared for me after surgery. She just stared at my head...also didn't say anything, but I knew what they were both thinking. I had a chuckle later on thinking about it.
Chemo #2 is tomorrow and boy do I hope these caps continue to work. I am happy but also very nervous about the shedding. Trying to keep the nerves under control and just go with it. I figure, i am doing my best; the rest is out of my control.
Good luck tomorrow ships girl. My dry ice is being delivered today - i found a new supplier that is cheaper even with home delivery, so that's one less stress for me. He won't take the left over ice back, but still cheaper than the first guy and really nice/sympathetic like the first guy.
xo
curly
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Funny story that i hope will help those of you nervous about the shedding- I am now approaching two months PFC and yesterday a co-worker mentioned to my friend that i have the best "wig" he has ever seen, and wondered if I had made it from my own hair because the color, style and everything are so close.
My friend told him all about the cold caps and he was blown away that I still have my real hair. On my head not a wig. Too funny.
Keep the faith ladies!! I am rooting for you. It is over before you know it.0 -
To the newbies, makingway has a website full of great information on using cold caps. Can't remember the web address, but you could PM her.
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Just received a request from my BS to talk with a woman about cold caps! Have been getting a few of these - from the breast care coordinator, my PT, and now my BS. Progress!
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Sciencgal - that is hilarious! Way to go!
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OMG! Rapunzel project just announced on Facebook that The Doctors will be doing a story on cold caps scheduled for May 2nd!
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Curly, I am cheering out loud for you. Yay for day 21 and still having hair. Thank you also for your help regarding ice times. I have to go back and research everything again but I've been working a lot lately and no time. Today is prep day and I have a lot to do.
Yes PatinMN, I wasn't happy about the late start. They say they are pretty punctual at my cancer centre for starting, and my infusion is an hour. I can come home and finish the caps at home, but it does mean it will be quite late. No worries though because I have just learned about steroids and I dont' think I'll be sleeping much anyway!! lol
My big concern now is that I have psoriasis and it's worst on my scalp. It's actually one reason that I didn't want to lose my hair because it would look so ugly. It is itching like crazy and I'm sure the stress is activating it. How am I going to keep my hands off my head and not scratch!!! I guess I could just wear a cold cap like a helmet so that I can't. lol I have to find some thing that will help or I'll scratch my fragile hair out.
Sciencegal, love the story. That is great. And 301724 I love that we are getting the word out there and making a difference.
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Curly, another question. Did you just use the one coleman cooler or two?
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Hi Shipsgirl. How much ice did you get? I got 100lbs...definitely needed 2 coolers. In fact, we did a quick run on my way home from chemo #1 to get some extra ice because the caps were a bit warm in the afternoon. This time, I ordered extra dry ice and will have a third cooler with the "extra" ice on hand. You don't need all of this; 2 coolers should be fine. This is based on Geralyn's write up...I think the dimensions they indicate are 40 x 40 x 40 (something like this) for the coleman coolers. I found that you could only fit a slab on the bottom and one in the middle and had to crush the slab to cover the top and be able to close the lid. So I basically went with half slabs and half pellets because the slabs seem to sublimate more slowly than the pellets; so i wanted extra comfort that at least the slabs would last. You do end up with ice at the end, so no need to worry.
Good luck tomorrow! Let me know how it goes. I have to be at the hospital tomorrow at 8am. Off to bed.
xo
curly
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Thanks Curls! I can't afford to run out of dry ice. My chemo is at 4pm and the place will be closed in the evening. I'll take a page from your book and get extra just to be sure.
Had my first mini meltdown today. Just a little stressed and it came to a head when people were all telling me "better" ways to do things. A few tears and I was good again.
I actually think the sensitivity was because I had my acrylic nails removed today. I know that sounds silly but I have had them for over 10 years and I keep them nicely coloured. I like (d) my hands and now these short, colourless stubs don't even look like mine. lol I felt a little odd about having them removed but when I checked in on myself afterwards, I thought I was okay. But I see that it was just another step towards chemo and I didn't like it.
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Caps on dry ice- 2.5 hours is not long enough to get the caps to the right temperature. I know the Penguin Co. and Geralyn advise people not to have the caps on ice any longer than 3 hours. Their recommendation is for fear that the caps will be damaged if people try to pull them apart when the caps are too cold and brittle. The caps in their boxes can be on dry ice overnight but you will have to take them OUT of the boxes to thaw for 1-1.5 hours prior to use. Do NOT try to pull them apart before they have thawed! When pulling them apart do so gently. Knead them to flatten, I start at the sides. The website with the dry ice instructions can be found at penguincoldcap.net. It will be up and running again in 2 days. Thanks to all the veteran PCC users for helping the newbies!
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Finally finished with my first chemo using cold caps. It was a long day and my neck is happy to have the extra weight off. We had a few hiccups. The day started on the wrong foot when the dry ice company delivered the ice cut to the wrong specifications. They sent me four 8" thick slabs instead of eight 2" thick slabs. Thank goodness for my next store neighbor who cut them to the correct size using a chain saw. Then the caps weren't cold enough when it was time to start the first one even though they had been on ice for three hours. We solved that problem by taking the caps out of their containers and laying them directly on the bagged ice. My team did a great job with the cap changes. The chemo nurses were skeptical but interested. Hopefully I'll arrive for my next treatment in three weeks with hair. The waiting begins...
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JC & Shipsgirl - glad you got through it! Good luck!
Shipsgirl - I understand completely. I had my own meltdown the day before chemo #1 at the thought of what was about to happen as reality set in. I was lucky to have a wonderful pep talk by a wonderful friend going through his own struggles. While certainly unrelated to this topic, he reminded me about the importance of enjoying the moment because the fear of the unknown and of all the things you feel you have lost or been cheated out of, are simply debilitating. He was right. I was so sad and i felt like i was facing a double whamy because as much as i paint on a smile for my kids, when i was playing with them, i was still sad inside, which made me feel guilty in addition to sad. So this is a work in progress for sure, but i am definitely doing better at being in the moment, especially with them. Two days before chemo #2, I spent an hour with them at the park, just enjoying them. Even managed to get in a little tag. It was a great day with beautiful weather and 2 beautiful smiling boys.
As for the nails - I totally understand; not silly at all. I also keep them painted and designed - i do this myself to my own nails; not acrylics. But I also read that sometimes dark nails help protect them against the drugs. Can you paint yours yourself, so you at least feel like they look almost normal? Sometimes just the small things help our morale; anything we can do to feel more normal is a good thing!
yesterday went well; more smoothly than round 1. And I loved walking in with hair. Most nurses were quite positive and asked a lot of questions, which was great. One even suggested i take pictures to prove the success down the road! My main nurse wasn't overly interested, but that's ok.
I could, however, use a pep talk myself! yesterday, i shed a lot at the nape, which i know most women seem to do, due to the way the caps fit. it was really depressing. That was in the morning, getting ready to go to chemo; NOT a morale booster!!! Then after finishing with the caps, my hair tends to be a dry mess, as I spray it to keep it down (it is curly and frizz prone). Well, I couldn't leave it like that after finishing with the caps, so i went to comb it out and tame it down. Didn't i have yet another huge shed, also more at the nape than anywhere, but certainly all over. No one else can tell, but I can, and I am the one who had to throw a huge amount of hair in the garbage twice yesterday. That was really depressing. I am trying to focus on the fact that without the caps, I would most definitely have no hair right now and I know rationally, no one can tell. But it is frightening and saddens me to see all that hair fall out. ugh. the hairs that are falling out seem to really get tangled in the hairs that are hangin on, and combing the tangles out is a real task. I looked in the mirror this morning - i know it looks pretty good, but i am scared as to what is to come. i can't imagine keeping a full head of hair if i shed this way daily.
Does it shed the same amount daily or does it calm down in between big sheds? I think i read someone had the worst shed between chemo #1 and chemo #2. Does that mean there is hope for some calm after yesterday's storm?
xo
curly
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Curly you are definitely in the worst shedding time, for many women at least. Keep the faith! It should not continue at that rate. I thought exactly the same but still have hair.
Please dont forget this chemo period is temporary! If we get through it with most of our hair we can get our regular nails- and life- back and look like our old selves once again. Just wiser. People have no idea what I went through this winter.
And shipsgirl I get it-i love nails too. I do my own and always have crazy colors on, and mid-length. I cut them short for the chemo so that the icing from the bags of peas could get easily to my fingertips, and so I could knead the cold caps most effectively. I did keep the fun colors though. I had hot pink or blue nails, and bright sleeveless mittens with a "bling ring" bauble over the top for each chemo session. My nurses and penguin crew enjoyed the fun.
No reason not to color the nails, although they are short. The icing of the fingers definitely works- I never had neuropoathy. That was my biggest fear after the fear of losing the hair!
With icing neither happened.
Thank you all, who came before us, for the tips!
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Sceincegal - thank you! Clinging to the hope! And you are so right - a huge thank you to the women who have gone through this before us and are passing on all of their tips. What wonderful ladies!
How are you doing now? Surgery recovery mode for you?
xo
curly
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Jc and Curly,
I just completed treatment #5 using the cold caps and I shed the most between #2 and #3. It was very depressing at first, but once I realized that Iwas not shedding as much after #3, I was going to be fine. I even have over 1 inch of hair growth thatit is gray instead of my dyed blond. My hair is long so to hold it down I put it in a light scrunchy on and a Nylon cap over the top of my head. I get the nylons cap at a wig shop and it is so thin it doesn't slow the cooling process. It does help to keep my hair down and not tangle in the caps. I only have one more treatment to go and I'm so blessed to have kept my hair. Keep the faith. They work and I feel so blessed to have been able to use them.0 -
Rhonda, thanks for the tip re: the nylon cap. hadn't thought of it. Also, did you shed much between #1 and #2 in addition to between #2 and #3? Looking for what to expect. So glad it slowed down for your. Your avatar looks so wonderful.
xo
curly
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I still shed, but not as much. I think the most shedding was between 2 and 3, but there was shedding between 1& 2 as well. I can't remember who it was, but one of these beautiful ladies recommend putting the hair that we shed in a plastic baggy so we can see that it really is not as much as we think it is. My hair used to shed a lot before chemo, but it was mostly in the shower so I only noticed it when I cleaned the drain. You have more hair on your head than you think you do so it should slow down after awhile and you'll be the only one to notice a difference. I wash my hair with Nourish shampoo from Trader Joes and Kenra spray in conitioner and use a large tooth pick on my hair. It's hard not to scrub during shampoo, but I do gently massage my scalp and don't use any conditioner while in the shower. Oh, I almost forgot. Another recommendation from this board is to put your shdedded hair outside where birds can use it to build a nest. Wishing you the best of luck.
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Curly - My worst shedding was right after #2 until #3 then it let up. My hair got tangles like your's did also. Just remind yourself that you had 100,000 or more hairs on your head to start with and that while it looks like a lot is coming off, you still have full coverage - minus your nape - and are not really losing as much as you think if you actually sat down to count each lost hair. I kept mine in baggies and while it looked like a lot, it really was not. You will be fine!
Rhonda - If your avatar is recent, you look spectacular! Congratulations.
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Thanks Hortense,
That picture was taken 2 weeks ago. I have dry hair so it looks a little thicker than it really is, but I'm pleased with the cold caps results.0
