Cold Caps Users Past and Present, to Save Hair
Comments
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Hey Y'all,
It's been a while since I checked in and have been working to catch up on all of the posts I've missed. I had TC number 4 on Monday and have had really good results with my cold caps. My MO and my PS are thrilled and VERY surprised since I'm the only one they know that is using them. Even my acupuncturist wanted to know more about them so he could pass the word along when and if he ever needs to. I have two more treatments to go and feel pretty good. I'd be lying if I said I didn't miss my brush, my products and my hairdryer/flat iron..... but that's ok! In due time. I remember being completely bald the first time I went through all of this 18 years ago.... and this is SO MUCH better!!!My hair has thinned, but no one else would be able to notice, just me.
And, I have lost a little hair around my ears, mostly on the right side. However, when I go out in public, I pull my long hair down to the nape of my neck, wrap it in a little bun and put a clip in it to hold it in place. I just bought the colormark so that I can use it before I go out of town next week. No one back home needs to see the grays on top of my head. LOL!!!! Hopefully the colormark will work well. Hope y'all are doing well and that everyone is feeling well today!! Deb
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Glad to hear the good hair news, Deb/amrdbit! I saw my primary care doc this morning for my annual visit - he was not involved in the cancer diagnosis or treatment so knew nothing about it. I gave him a quick primer on cold caps - he had never heard of such a thing, but hopefully he will pass the word along to any of his patients facing chemo of any sort. He also said he would mention it to the other docs in the group.
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I START CHEMO ON TUESDAY. AM USING ELASTO-GELS. I AM PRACTICING THIS WEEKEND BECAUSE I DO NOT LIKE SURPRIZES. I PLAN TO TAKE TYLENOL AND WILL GET ATIVAN IN MY PRE-MEDS. BUT NO MEDS FOR PRACTICE. HAD ONE CAP ON 15 MINUTES. PROBLEM IS I GOT SHORTNESS OF BREATH AND PALPATATIONS . COLD WAS TOLERABLE. THIS HAPPEN TO ANY OF YOU? I WILL DEFINATELY KEEP TRYING.
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Help please! I start chemo on Thursday and practised the cold caps today. I had 2 problems:
1. The chin strap really bothered me, especially as I added the black strap to tighten. I felt like it was choking my neck and haven't been able to come up with something to minimize the discomfort. It was actually more uncomfortable than the cold from the cap out of the freezer! Any tips?
2. I know I've read a number of posts re: the back of the head not getting cold. i definitely have this problem. I have thick, long hair and I didn't feel any cold at the back of my head, even with the extra "chin" strap pulled against the nape. Any tips on this?
I would be so grateful for help!
thanks!
curly
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I put a small washcloth between the black strap and my chin/neck to avoid the scratching. Not sure if you are also using the extra blue straps for long, thick hair. I wrapped each one over the nape on top of the cap and velcroed in front on top of my head. Each blue strap was right adjacent to the other, one along nape and coming over ears/temple. The second right above it. My girl kneeded the cap during treatment and pushed it down on my head, especially the back. Unfortunately those of us with extra thick hair will lose alot of thickness because it actually pads the scalp. I tried to spread my hair in the back but eventually it thinned back there over time. Good luck!
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Hi Schoolmom. Thanks for the tip. As for the extra blue straps, they sent me only 4 and said they take 1.5 hours to re-freeze. That would only let me use one per cap change I think. Did you have 8 straps?
I tried the wash cloth and a turtle neck pulled onto my chin - the strap is so uncomfy, i can barely swallow. I tried moving the chin strap further from my neck, but then there is too much space at the temples.
How did your hair do over the course of treatment?
This is stressful!
curly
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JC - Even though your MO has never heard of cold caps, the chemo nurses at HUP/Perleman have. They seemed to have no problem with them. While I did not use cold caps, I did talk to the chemo nurses about other patients who have used them. They were interested in outcomes etc. Was it Dr Czerniecki who recommended them? He was my surgeon and I think he is terrific! I would strongly recommend staying at HUP for your tx. HUP is a NCI Designated Cancer treatment center. Chestnut Hill might be nice, but it doesn't have the same opportunity for new tx as a research hospital has.
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Jane, yes it was Dr. Czerniecki who suggested the cold caps. Penn just opened up a new cancer treatment center in Valley Forge which I will probably use. If I go into the city I would have to stay there until I was finished with the cold caps or pull over on the Schuykill expressway for a cap change (can you imagine
since it would take longer than 20 minutes to get home. No, I wouldn't consider using Chestnut Hill- I was just trying to get info on the caps from them but never got a return phone call. 0 -
Hey beautiful and strong ladies, I'm scheduled to start my first chemo next week and I'm super stressed out... I started reading this forum tonight to learn about all side effects and how we can prevent some of them, more specifically hair, lashes, and eyebrows. I visited the penguine cold cap website, called the support # and ended up speaking to Frank who was extremely helpful. I placed a rental order for 4 caps and the total was just over $1500. I didn't complete the order because I wanted to speak to Geralyn beforehand. For those of you who used the cold caps, would you mind sharing how much you paid to rent these caps? Thanks
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Modavie, I think the usual number of caps is 14, not 4. The charge depends on how long you need them, and the exchange rate in effect at the time the charge goes through. Plus the amount that your credit card charges to exchange foreign currency (mine was 3%). For me the total cost was between $1,500 - $1,600 for the caps. Some people rent the extra gel bands for more coverage at the nape of the neck, but I didn't need that. if you need the caps for more than 3 months, the cost per month goes down. You'll need to buy supplies too - an infrared thermometer, moleskin to protect the forehead, dry ice and coolers if your facility doesn't have a medical freezer for the caps. I had the benefit of a local rep for Penguin, who charged a modest fee for training my helpers and was available to do the cap changes if needed, again for a modest fee. My facility had a freezer, and an infrared thermometer for all to use, so I didn't have that expense.
if you decide you want to use the cold caps, you might need to postpone the beginning of your chemo for a week in order to get the caps and everything else organized.
The caps worked wonderfully well for me (I had 12 weekly taxol plus Herceptin) and I am so happy I found out about them before starting chemo!0 -
JC - Haha! I can just imagine pulling over on the 'surekill' expressway for a cap change!
My daughter's GP has office hours at that new campus. I went with her a few months ago and found the new location very comfortable - easy to find and to park. The cancer treatment center had not yet opened, but I received a postcard announcing its opening a few weeks later. The atmosphere looks very low-key and relaxing; just what you need for a chemo suite. I wish I had the opportunity to use this location last year when I had chemo. We live about 20 minutes away with calm traffic, as opposed to 40 minutes in crazy traffic to get to Philly. Oh well, water under the bridge!
Good luck with your tx and the caps! Before you know it a year will have passed and your life will be back on track!
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curly123 I too had issues with my chin strap killing me. It felt like I had lock jaw at times. I was unable to eat anything during my first infusion and practically choked when my helper gave me a gold fish to try and chew on! Because of this, I was unable to eat at all during my treatment. Fortunately, I ate a big breakfast before hand and drank water through a straw. I placed moleskin under my chin for some added comfort. However, for my next treatment Wednesday, I think I am going to try a maxi pad to see if that helps. Towards the end of my first treatment, I did start loosening the chin strap because it got too painful. My helpers (I had 2) would place the cap and secure it, then they would take one strap and place the center at the nape of my neck and pull tightly toward the temporal part of my head. Then they would take a second strap and centering on the top of my head would take a strap over the "corners", where there are cap velcro and come straight down securing the straps under my chin. Once this was done, i would loosen the chin strap so that i didn't feel like I was choking and i would have my helper check that the side were still tight. This helped.
Next treatment is Wednesday. I plan on taking protein drinks (EAS makes a rich dark chocolate with 17g of protein) that I can drink through a straw. Hopefully, this will give me the nourishment I need during infusion.
FYI - I am on day 19 and still no shedding. I have lost hair elsewhere on my body so i am hoping this is a good sign that the hair on my head will stay. I wake every morning fearful that i will have to vacuum my pillow, but so far so good. I have had flaking on my scalp where I am sure I had freezer burn. I am going to have to change my part for the next treatment to avoid doing more damage to that area.
Good luck to you. I highly suggest you take something before you start wearing the caps. At the very least Advil or acetaminphen. I tool Advil and an adavant because my nerves were shot just from sheer anxiety over what to expect from the first chemo treatment. This next time I will definitely take the Adavant and even perhaps a pain pill. The first treatment is the worst and the longest simply because you don't know what to expect, but I have heard that it will get easier (not sure about SEs getting easier) but that actual day will be better.
Forgot to mention that I have 8 caps. I was also given 4 headbands but I didn't use them because none of the paperwork, website or video explained how to use them.
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I used the caps from Oct. through Dec. I had 8 caps that I 'recycled' for a total of 14 per session. Total cap cost was $1978 (I had the caps a bit early).
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Curly. The blue strap on the cap was under my chin and secured. The tight one for me was the gold strap they put on as the final step and it had velcro....this is the one I used a small baby wash cloth with to pad my skin. I did not eat during treatment and would keep the gold strap tight but not choking. I also moved it closer to my chin and not by my throat.
I too received 4 blue straps but used 2 each cap. I had dry ice pellets in ziploc baggies and would place those on the 2 unused straps to get them cold. They really are for pushing the cap tighter on your head and the temp of the cap needs to be at protocal temperture. The blue straps help if your head is bigger, like mine, or your hair is thicker, like mine.
I kept all my hair on top but lost a great deal of thickness at temples, nape and the lower back. By the end of treatment I was so depressed how much thickness I had lost. The majority started shedding between treatments 2 and 3 and then gradually slowed down. I am 11 weeks PFC and the hair only sheds at washing which is normal for me. The regrowth is about 2 inches at the temple and nape and back.
I never needed a wig and went back to work 4 days after final chemo and no one noticed other than "you cut your hair". The shedding in back took about 2 inches off of my original length. I trimmed 1 inch 4 weeks PFC and 8 weeks PFC and I have been using the colormark colorstick for some gray regrowth in front.
You will have hair, you will not go bald, but you will not have YOUR hair. I accepted the fact that It will probably take a year to regain some fullness and length and the natural body and shine. But if I did not use the caps, I probably would have a haircut about 4 inches long after a year of wigs etc.
My pic now shows my final day of chemo. Hang in there.
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modavie, Frank is the inventor, I spoke with him several times when I first looked into the caps, he is wonderful. If your facility has a freezer, they will send you 14 caps. If you are using dry ice, I believe you will receive 8. As Pat wrote, the rental is for the length of time, not the number of caps.
curly and jlow, The chin strap should not be uncomfortable. Once the cap is securely fastened on your head and your straps are in place, you can loosen the chin strap. You should be able to eat, drink, etc. There is no reason to keep the chin strap so tight that you are not comfortable. I have posted a link that may help. It is a blog written by mgd from these boards.
http://breastcancerwontdefineme.blogspot.com/2012/01/tips-for-using-penguin-cold-caps.html
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Hi Eden,
Thanks for the info! I need to call my hospital tomorrow to ask if they allow these caps to be used. I don't want to get them if I can't use them. My treatment plan is 4x 21 days of AC followed by 12 weeks of T. The onco nurse told me that I would lose my hair during the AC module - i.e. 3.5 months; she also said that my hair should start growing back about 3 weeks after my last AC infusion or right before I start the treatment with taxol. Apparently, the hair grows back during the taxol module however the eyelashes and brows will be gone. I'll be getting taxol in small doses every week for 12 weeks. I'll see if it's possible to push the chemo start date to the first week of April. I'd also like to do one last round of follicle collection because I do want to have kids after this horrible period of my life has passed.
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Hi modavie,
We have the same regimen. I'm on day 21 post chemo 1. I am dose dense though. Feel free to PM me with questions. I also froze eggs - got 18 in one shot! Not bad.
I had VERY heavy shedding yesterday. Scared the crap out of me. It was a hair wash day and I still have full coverage if you don't count left sideburn hair. I have long hair, fine, but lots of it. Here's hoping I keep full coverage. 3rd infusion is Thursday.
Good luck!0 -
Hi TXSocksMonkey,
Yuppie, you are done with AC and you have your hair
I also have thin hair but tons of it and curly. I did the stupid mistake to cut it 2 days ago while I was on a search for a wig. My hair was super long and now it's neck length. I like my new look but last night when I spoke to Frank I realized that I made a mistake. I should've kept the length because the success rate of the cold caps is higher when the hair is longer. I truly hope my onco will allow me to use the caps.According to my nurse you should see your hair grow back during the T module, please keep me posted. Did you do something about your eyelashes and eyebrows? Tomorrow I'll swing by one of the plastic surgery clinics in my neighbourhood to buy Latisse. I've read on forums that eye lashes and brows fall out during the taxol period and it takes months before they start growing back.
I did three collections so far and I have 7 frozen embryos, I don't know if this is enough. I got my period 2 days ago and I'll ask my nurse if they can push my chemo date by a few days so I can have one last round of collection. The infertility after chemo is scaring the hell out of me! I also need to take anti hormones for 5 years after chemo. My onco told me I would be taking a risk if I decided to get prego during this period and he recommended I look for a surrogate mother. What were you told about pregnancy after chemo?
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I'm using latisse for my brows and lashes. Started a couple weeks before chemo. Both are super long and thick. I think it's working because the stray hairs that I'm plucking come out very easily but so far the parts with latisse are holding on tight.
Infertility: your doctor is uninformed if he says get a surrogate. It also sounds like your fertility guy isn't trying to get as many eggs harvested as possible. How many follicles did you have? I'm 38 and had 22.
The post chemo protocol is to wait until 2 years on tamoxifen to take a tamoxifen vacation. There are new studies showing that actually being pregnant after breast cancer does not increase risk of reoccurrence and may offer protective properties instead. New protocol also says 10 years tamoxifen. Yay.0 -
One more thing: I was unemployed for part of last year and qualified for fertile hope. They pay for the fertility drugs needed for young women with breast cancer. It saved me about $3000.
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They didn't give me any stimulation before the collection because my onco didn't provide the green light. The first time around they collected 7 follicles, second time 2, and the third time 5. They said I had a very good reserve - more than 24 but most were very small and they couldn't collect them. Out of the ones they collected, they managed to mature all of them but only 7 fertilized and survived until day 3 - so they froze them. I'm hoping to add a few more to my existing collection. I'm in Canada, province of Quebec, and the government pays for 3 IVF of 6 IVM's. I haven't paid a penny up until now for which I'm grateful.
My husband and I have no kids and I hope all is well my health in the next few years so we can try.
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Quebec... So we should be pronouncing your username muh-dah-vee? Lol. Lucky you on paying for fertility treatments. Mine are out of pocket.
Start hair, skin and nail vitamins now and start using nailteks #2+ to save your nails during taxol. I couldn't break one now if I tried. Get one with high doses of vegetal silica to prevent shedding.0 -
Yes, you go the pronounciation right
I'm going to the organic store this pm and I hope I can find the nailteks #2+ if not I'll order it on line. What vitamins are you taking?
Thanks a lot of all your info, much appreciated!
xxx
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As far as the chin strap....we did it tight and then got the other straps in place. Once they were in place tightly, I was able to loosen the chin strap. Can you make sure you get one of the additional straps over the temple area tight enough so you can loosen the chin strap??
Welcome newbies! Cold caps work....have faith! I have info and photos on my blog. If any other gals had success and would be willing to share pictures on my blog I would love that. I want women to see for themselves that caps do work. PM and I can give you my email if you want to email pictures. I can cover your face in the pictures if you don't want your face exposed. I have photo editing software.
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Don't forget to get some pro-biotics when you go vitamin shopping. Taking them will keep your gut in order and help stave off yeast infections - you know where. My OBGYN told me about them ... when I went to him with a raging yeast infection post chemo. Do wish he had mentioned taking them before I started chemo.
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Wondering if any cold cap users would list what shampoo, conditioners or other products they used successfully. I went to Ulta yesterday and was a bit overwhelmed by all the sulfate free options. My hair is thick and will get very frizzy without my normal smoothing products (although if I still have hair, maybe I won't mind the frizz). Did anyone use a lightweight leave in conditioner?
And how do you "talk to Frank"?
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I used Burt's Bees for a while and then I switched to Organix brand. I did not do a leave in conditioner. My hair is also very frizzy. I mostly wore it wavy when going through chemo - I usually blow dry it straight so this was an adjustment. The best thing I could find to use on it when it was wet was Aveda's Be Curly. It did cut down on the frizz when I let it air dry.
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Re: Fertility - All of you dear ladies undergoing egg harvesting, please consider posting about it on the Fertility thread here to help inform other women, as when I used the "search" button to see what popped up under Fertility a minute ago the last posts on the only thread I found seemed to have been from a year ago.
I have met too many young women who have no idea that chemo could compromise their fertility and it's important that they be able to find information about it.
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Day 20 past first infusion and still not shedding more than normal. I wake every morning to see if I have to break out the Hoover to clean my pillow!
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Mine started at day 21 Jlow.....it was not that bad at first. Good luck! YOu are going to have round two this week..you will be half way done!
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