Cold Caps Users Past and Present, to Save Hair
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Marie,
I had a different chemo cocktail (mine was 4 rounds of Adriamycin & Cytoxan and 12 rounds of Taxol). The 4 rounds of AC were the longest days for me - I started cooling during pre-meds 30 minutes before chemo started and stayed for 2 hours after all chemo infusion finished. Even though you're receiving different drugs, you will probably have to stay 2 hours after both infusions are complete.
As for hair regrowth, I did start seeing regrowth while still getting Taxol. It wasn't the fine baby bird fluff I've heard can regrow at first after chemo, it was normal looking hair. If you look back on this thread, I did a photo collage that shows what my hair looked like throughout treatment. I finished chemo at the end of October in 2018 and cut what was left of my long hair on December 13 to match what had grown.
And after that regrowth was pretty fast. By the time my daughter got married in June 2019, I had had several haircuts to get to this
Kim
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marie914 I think 6-8 weeks after final chemo is when new hair started growing back. Then, by 4-6 months post final chemo, it was very fluffy, as new hair grew in and filled in at my scalp. It took just 3 weeks or so to have eyebrows and eyelashes grow back, and they fell out near the end of my treatment.
My overall success was really good, and I used Paxman, because my chemo infusion clinic had that machinery. No one really knew that I was going through chemo. My hair was thin, but it passed for normal hair.
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Thanks Karen and hiking lady! I love that we have so much experience on this site. It sure does help.
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Hi all, I’m going to start my chemo session (TCHP)on Monday and will use Penguin Cold Cap. Is any shampoo that you will recommend? I am considering the Honest Company baby shampoo but find some reviews saying people lose their hair from using it so am a bit concerned.
Do you use conditioner also? Also, is hair net recommended for sleeping?
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I used Everyone (Balance) shampoo and conditioner, they're sulfate and parabin free as well as no synthetic fragrance (smells like citrus). I did buy Honest Company Sweet Orange Vanilla Conditioning Spray which was fantastic. I started using it at the end of my treatment because my hair was so dry and brittle, it did wonders.
With DigniCap I was only allowed to wash and condition my hair 1-2 times per week and never condition the morning of treatment.
Best of luck!
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Thanks Morrigan_2575! I am going to give it a try with the Honest Company then. By the way, I notice you are undergoing TDM-1. Are the side effects for TDM-1 as bad and TC? My oncologist said people loses hair from that too
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no hair loss from Kadcyla. It's growing pretty well.
I don't have and major SEs on Kadcyla, it's much, much better than TCHP. However, I've seen others struggling with it.
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I used Penguin Cold Caps and finished my last chemo on Sept 16. I know the Hair Care Guide I got from them says not to cut or color your hair for 6 months. I don't mind waiting for color but would really like a cut. Any input would be appreciated!
Also, EZhang123, I used Hairitage "outta my hair" shampoo and "light as a feather" leave-in conditioner. Bought them at Walmart. Don't remember how much but very reasonably priced. Been very happy with them. Both are sulphate and paraben free. Good luck!
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Camama2 - when I finished chemo, I continued to shed for quite a few weeks after (I can’t remember exactly). So my hair was straggly and uneven. Someone here suggested a tiny butterfly clip to lightly pin it up in the back. Because the very small butterfly clips don’t pull much, it was an easy solution to the uneven hair until I could safely get a hair cut.
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i was shedding for a good 4-5 weeks PFC.
I actually just dyed my hair last week, (1 week shy of 6 months). I don't plan on a haircut until Summer (mostly COVID related).
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Morrigan_2575 - I’m glad to hear the SE for Kadcyla is minimal for you. Hope it will continue to go smoothly throughout the rest of your treatment and you’ll be completely done with all these.
Camama2 - thank you for the information. I will see how Honest company work and hopefully I will still have hair after the 2nd chemo session to try other products if needed.
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So I am using DigniCap and my first infusion was Wednesday November 4. Everything seemed to be going well, but day 20 I started losing hair - shedding. More than just a bit but not big clumps. There are two sections where it is pretty thin. My next infusion was supposed to be tomorrow but it was moved to Friday because of Thanksgiving.
Any experiences with this happening? Like 1) did you not have any shedding? 2) did it stop shedding after the initial week? 3) will it keep shedding but not go completely bald 4) can it still go completely bald?
Just wondering if I will need a wig - right now a ball cap is sufficient. It doesn't look too good because of not washing and those two thin sections.
Thanks!
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Marie914 - Shedding after 20 days is a typical experience for cold cappers. The shedding should slow down in another week or so (just in time for your next infusion). It’s normal to shed throughout the whole chemo process and for a few months after the last chemo. But cold capping allows you to keep some hair and start regrowth sooner. I have thin hair so I looked rough during chemo.
Wishing you the best!
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Thank you GoKale! That is what I needed to hear. I thought so but it is scary when it starts to fall out. I have thin hair so I am looking rough.
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i started shedding around day 15-16 the shedding slowed down after cycle 4. I was shedding until maybe 6 weeks after my final Chemo treatment.
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marie914
I’m very worried, because I’ve had a lot of thinning, and clumps are coming out. I have my next chemo tomorrow. I’ll ask the nurse who does the DigniCap what she thinks. If I keep shedding the way I have been, I may have to Reconsider keeping my hair.
Holding out hope for us!
Happy Thanksgiving 🦃 all!
Lesli
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Hi Lesli and marie914. I just had my first TC infusion on Tuesday and am reading your posts. I got a pixie cut and am using Paxman cold colds. Hoping for the best but I also bought a bunch of fleece caps. WIshing us all good outcomes.
Sharon
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Hello! I had my second infusion yesterday Friday 11/27 (it was the 24th day because they couldn't do it on the 3rd week Wednesday since it was a 1/2 day and with the cold cap I go until 2:30. I do TC and DigniCap and I lost some of my hair (it felt like most of it, but really wasn't) on the 19-21 day. I am still shedding my not as bad. I lost it mostly on my forehead and then some on my top of my head towards the back. I can cover that well with combing, but the forehead looks too bare to me but my husband says it is fine. I usually wear a ball cap if we go out.
Lesli - My nurse told me I was doing well. That my hair loss was normal for the first cycle. So I hope I won't have to reconsider too. I heard that it does help come in faster and you do not lose it all. To me it just looks bad throughout and messy.
Sharon0706 - praying and hoping for good outcomes for us all.
Morrigan - thank you - so we expect shedding all the way to the end.
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Hi,
I’m considering trying the Penguin Cold cap since my treatment center doesn’t offer cooling machines. It seems like a huge undertaking and I’m wondering if it’s worth it. It will be very expensive because I am required to bring a professional cold capper with me. Thanks to Covid the facility doesn’t allow me to bring in anyone else. The professional cappers cost a fortune! Does anyone know someone who volunteers to do this? I live in NJ
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Hi Alexxus, and welcome to Breastcancer.org! We can't really help you with your question but perhaps you could also do a search in our discussion boards. If you go to the Search function in the left blue menu and type in "professional cold capper" (without the quotes) as your search term, you'll see every time those words have been mentioned in a post, and can then check out the thread and even contact the member via private message.
Good luck, and let us know if you have any questions for us!
The Mods
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I'm sorry I don't know anyone that can help. If you're in North/Central Jersey my place has the Dignicap.
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Alexxus - I used ChemoColdCaps in 2016 who did not require a professional helper. I certainly could not have done it on my own and contacted several people to help me. Call around for Dry Ice, the prices can really vary. With the Covid Vaccine requiring Dry Ice to keep it cold, availability could vary. At that time ChemoColdCaps had an agreement with AirGas for reduced prices for Cold Cap users, but there was no local distributor where I am, so I bought from a store. My partner helped me pick up the Dry Ice and prepare the caps, and drove me to the clinic. A team of friends helped me monitor time and change caps. I think the cold capping was required one hour before infusion, during the infusion, and for 1 or two hours afterwards. So lots of cap changing. Pellet Dry Ice was not available where I was, so I put chunks in a cloth bag and smashed it. It smashes easily. DO NOT touch the ice with bare hands, always wear the heavy gloves that they should provide. If Penguine requires a "professional assistant" they should be able to provide a list of names. Keep all receipts, including Dry Ice. My medical expenses were so hight that year with chemo, surgery etc, that I did have enough to take a small deduction on taxes. Good luck, hope all goes well.
Have been thinking about all the news on the Corona Virus vaccine and temperature requirements. Colder than Antartica, doesn't mean much to me. -70C even when converted to -94F doesn't mean much. But cold capping - those caps were -30C when pulled out of the cooler. So 2.3 times colder than a cold cap in chemotherapy is a little easier to understand.
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Alexxus- I used penguin cold caps in 2016 and my husband was my helper, changing caps. We hired someone who had already gone through the process herself for the first round and she showed my husband how to do it. After that, my husband took over. My place in CA had the fridge so we didn’t need to buy the ice or carry the caps back and forth. Hope this helps. Best of luck to you.
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hello Alexxus I am currently using the penguin cold caps and have finished 2 of my 4 TC rounds. The first one we paid the $500 to have the trainer come out and show my husband how to do it and honestly my husband felt more confident but it's not necessary it's daunting the first few times then u get the hang of it. The premier package for us came with the cooler and the caps but dry ice is about 0.50 cents to $1 per lbs and you need 50-60 lbs if you get it the night before like us if you can get it the day of it's about 30 lbs needed and you put the room temperature caps in the cooler with dry ice 2 hrs before so that way temp should be -32 to -28 deg. Make sure you get a temp gun instead and test all 5 areas of the cap. This video helped a lot ( it won’t let me post the link but it’s on you tube scot dietz penguin cold cap instructions) Good luck to you and let me know any other questions I can help with
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Hi Everyone,
I will scroll up and read the posts throughout the day but want to say hi. I'm starting chemo on Thursday (Jan 7) and using the Dignicap. We will see. I'm doing it weekly Taxol micro doses (i think) for 12 weeks, so i just look forward to getting the count down starting and hoping I don't get too sick. I'm not certain 'micro-dose' is the correct term, but my doctor said, "They are smaller doses so you shouldn't feel as sick." Fingers and toes crossed. Thanks for posting....feels less lonely to have found the group.
Claire
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Hi Alexxus,
I wonder if you could ask the hospital if an off duty nurse would be able to help you? Could the nurse be considered a "professional", or does it have to be an employee of Penguin?
Sending hopeful vibes...also, I'm kind a late to the original post and so far only read your first post, so you might already have a solution. LOL.
Claire
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hello claire1973 good luck on your journey with chemo and the cold caps I have had 3 rounds of taxotere and cytoxan and my fourth and last will be next week thank the Lord! I have pretty much my whole head of hair besides mild thinning near my ears and temple but so mild no one believes me so cold caps are worth it but definitely require a whole life style change regarding caring for your hair that I really didn’t understand so here are my tips hopefully they can help
Shampoo— I used the sojourn color preserve and only wash twice a wk, use room temperature to cool water on low strength and I actually found most helpful to get a small squirt bottle and add a bunch of shampoo mix it with water and slowly squirt it around your scalp so that way you are not massaging so much to pull the hair.
Brushing- I would apply leave in conditioner/ detangler to the ends and wait until it dries to lightly brush the ends but most of the time try just to use my fingers. Try only to brush once a day.
Hair styles- I found up until the 2wk after the 2nd round I didn’t really have any hair loss so I could leave my hair down without problems but after if I left my hair down (I have long hair to my bra) it would easily catch on my clothes and I felt get pulled out easier so I started putting my hair in a loose braid which is my go to with loose strands around my face to make sure there is no tension. I also use bumble and bumble hair powder between washings and I tried not to apply to my scalp.
Good luck and just keep remembering to stay positive it’s not as bad as you think
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Baile112--how are you feeling after final treatment? Thanks for the tips on the hair care. How long will you continue the hair care regimen post chemo? I'm heard 2 months? I'm using a shampoo called Olaplex and am only shampooing twice a week. I could probably stomach once a week, but
.My hair is just below chin length. I have some hats I can wear and i have been putting it in a low pony with a gentle band--I've lost half of them because they are so gentle they slide out.
I will try leaving in the conditioner. I also have an Olaplex conditioner. I go Thursday for number 3. Yes--I have heard it will start shedding any day now. We will see--I'm fine with whatever happens at this point,
Claire
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I'm on day 25 (have had 4 of 12 weekly treatments) and don't see much change (if any) in shedding yet. I'm hoping the cap is doing its job. My ears are SO COLD during the whole thing but I am just going to continue and try some mind over matter stuff---and I'm going to watch Bridgeton, so maybe that will help.
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I used sprig bandless ear bags from Amazonto keep my ears warm. I did cut out the slim metal piece to make them more comfortable under my cold cap.
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