Cold Caps Users Past and Present, to Save Hair
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Ykh: THANK YOU for your very helpful post. You and I are on the same regimen so that gives me a piece of mind and also tells me how to prepare better. Appreciate it! 😊
Ladies: Humor me here, and sorry if this is a silly question..for those using cold caps, have you ever wondered if cold capping would lessen the effectiveness of chemo in your skull, brain etc? Have you been been able to get an answer? The question just keeps popping in my mind. 😨
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Butterfly, a friend sent me a link to this article just last week:
https://academic.oup.com/annonc/article/17/2/350/164561
While the article is a few years old, it does address your question regarding the effectiveness of chemo vis-a-vis the head. I'm sure there are more recent discussions and studies.
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ButterflyLilly,
I did some digging about this too( before deciding on cold caps), and there is good info on the topic on the rapunzel project website. There have been multiple studies on whether the whether cold caps cause scalp metastases. There is no link and scalp mets are extremely rare as it is. There wasn't a link between cold caps and reoccurance in general. As far a the brain, I don't think that the cold can penetrate that far.
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ButterflyLilly, I also recommend buying Toppik (https://www.toppik.com/) to hide any thinning you will have while on the treatment. Be extremely careful with your hair - no pulling/hair products/blow drying. Wash your hair with a cool water using a bowl/cup to minimize water pressure on the hair (remember your hair will be very fragile). Also, buy a satin/silk pillow case which helps to reduce tangling. I think Arctic CC should give you the instructions on how to baby your hair. I was also using black castor oil on my eyelashes and eyebrows from day one to reduce the thinning. If you work out in the gym, make sure your head is not overheated (I actually stopped going to the gym while on AC and then slowly returned while on Taxol). AC is the worst on hair, so make sure you strictly follow Arctic CC protocol in order to achieve the best results!
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ButterflyLilly, forgot to mention - I was taking Biotin (5000mg) from day 1. It was recommended by Penguin CC.
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Whew! You gals have been busy chatting up a storm while I've been the North Carolina napping queen these past couple of days. #6 hit me with greater fatigue than previous infusions..... but I keep reminding myself --Last One!!! and allowing my body the rest it needs.
Vivianlu-- great to hear from you, and always amazed how you have been able to continue with regular life without anyone having a clue of what you were going through...and so happy you have grown stronger over these past PFC months! Have you stopped shedding? Has new hair been growing in beneath your pre-chemo hair?
Sciencegal Jan-- Thanks for stopping by the thread to share, and CONGRATS on 5 years NED! We all aspire to such continued health!
Shlomit-- I love your lawyer-client post! We must have been writing and posting at the same time that morning, so I totally missed it until looking back over posts today.... love it! And congrats on completing 1st chemo-- only 3 more to go!! And love your analogy of the movie Groundhog Day (love that movie, and not a coincidence that today is GHDay!) when it comes to cold capping! So true, so true!
SarahSC-- congrats on also finishing 1st TC and only having 3 more to go!! You girls will be done before you know it! Hate you have such a drive challenge, but worth it in the end as you will see. Only 3 more times!
Amelia-- I hate to hear that you are feeling like you have already lost half of your hair. I remember after my 2nd chemo feeling like at least half must have fallen out, but it really wasn't that much-- especially for us thick-haired gals...because here I am after 6 and closer to 50%, but still have plenty that no one would know my situation. I'm curious to see where I'll be after several months of PFC shedding ...Lord knows, I'll be keeping everyone posted!
And My sink is full of hair after my daily morning comb, but like you mentioned, I have to do it or I will have nothing but a matted mess! It took until right before my 3rd treatment to see all my hoo hoo hair fall out, even if I pulled on it....it was like one day it was there and next it was gone. There would be days when I would see hair all over my clothes and days when I wouldn't see hardly any. I learned the importance of wearing a hair net when cooking...and checking to make sure none were in my sleeves or shirt that could fall where they weren't invited. And the EC will be much harder on your hair loss than the Taxol. It is my understanding that once you make it to Taxol your shedding should slow down significantly. Hang in there!! But consider calling the Dignicap rep in case you are concerned and have further questions about their system. Hugs!!😍
Butterfly-- Sounds like you are making your decision with a clear and wise mind. Believe in your choice and make it happen! You got this! Looks like you received good feedback regarding caps hindering chemo to brain...same research we all checked on. And speaking of brain, chemo brain is real! I am an event planner/caterer, and pride myself of my OCD attention to details, but I had quite a fog come over me for sure....but never got real bad or anything, just would be at a loss for the words I was looking for more than anything. Luckily for my business, winter are our down time months, so I haven't been challenged much, but spring weddings are on their way! You will do fine at your bank-- just give yourself grace! And I'm sorry you had to be diagnosed just as you were in the midst of your family planning--BC timing can really suck! After my lymphoma at 22, I was told I more than likely could not have children. 4 years later met my now husband and he said no problem--if it is meant to be that we cannot have children then we will adopt. God has a plan for you and your family. Take care of yourself now! 😘😘
Rock city-- I totally changed my part in between caps. Just moved in thirds back and forth across my head. Took 2 secs and worked like a charm!
Jlove-- your hair will do great with paxman system and 4TC! As for brows and lashes, I used castor oil but all has thinned by end of my 4th TC....but still enough to color in and look just fine! I'll let you all know when they all fall out. Good luck!
Double Whew! All that on my iPad in bed this late at night with chemo brain (LAST ONE) took me almost an hour to type! Off to rest and continue to recover! Love and a glorious weekend to you all! 💪🏼😃🦋🙏🏻
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ladies, I hope you're enjoying a peaceful weekend and want to thank each one of you for your very helpful feedback and warm kindness. It is priceless at a time like this. You are all in my thoughts! ❤
Countdown to chemo on Friday Feb 9th! I spoke to my BS yesterday and he said that the mets in my lymph node was 2mm. This was surprising to him considering my T was only 8mm. All the more reason to do chemo. He said my current chance of recurrence is 18% and after chemo + tamoxifen down to less than 9%. I'll take it!
Question: did anyone take any measures to protect their eyebrows and eyelashes? 👵
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Butterfly, I've been using the "Brian Joseph's" brand of lash/brow gel (I first heard about it from the Arctic people). It's pricey, but if you order two or more, the shipping is free; the quantity in each vial isn't large, so daily use through chemo tells me I'll need more. Their website is https://brian-josephs.myshopify.com/products/brian-josephs-lash-brow-conditioning-gel. The jury is still out as to how well it works since I'm only about 8 days post-1st chemo. I started using it a few days in advance of the chemo, and am applying it every day. The ingredients are pretty organic. I just ordered 2 more.
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For what it's worth, several here (Pamela among them, I believe) have reported multiple rounds of eyebrow/eyelash loss PFC. I myself have therefore opted to use castor oil during chemo and not spend money on pricier options until after I've completed treatment. I have a small gap in my lashes and my brows have thinned a bit, but both are basically hanging on so far and I've completed 4 of 6 rounds of TCHP.
My MO said it was okay for me to start taking Biotin now, so I've begun doing that. I've purchased Shiseido Full Lash and brow serum (about $35), which was recommended by a coworker for use after chemo,
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SarahSC - Well done on getting through your first chemo round !
MamaFelice - Congratulations on finishing chemo !!! So happy for you ! - you look GREAT !!
My momma has her second round of EC next friday but the shedding began this evening, her hair started to get really dry at the back and it sort of tangled/turned into a dread and she was too scared to brush her hair last night after she washed it and let it air dry without combing ! So she just went through her hair now gently combing it and combing out that dread but it sort of completely came out in a clump..
I really hope cold capping helps her she was so heart broken with all the hair that came out to me and questioned if CC will work but i told her she has to persevere and that shedding is just part of the process !Is taxol as difficult as EC on the hair ? she has 2 rounds of EC left ( 1 down ) and then 12 rounds of taxol.
xx
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what cold cap? where you get those cap? i have to buy a wig
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we would loose the eyelashes also?
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Wow. Took a little break and so much going on! Congrats MamaFelice on being DONE! Welcome to all the new cappers and hope things go smoothly. For those of you concerned about SEs from chemo (especially taxol) other than hair loss, I'd be happy to PM you about the things I did for prevention of neuropathy, mouth sores, digestive issues, etc. Have posted about them several times so don't want to bore anyone.
I do have a major PSA now for those of you with school-age children:
I have been reluctant to post about it bc this is a public forum (not just visible to members) but feel it's important to share the info. A couple of weeks into treatment, my daughter and I both got lice (it had been going around in her school). Some of you (if you get email notifications) may know this already, as I posted in a panic and then deleted in a panic as well. :-) I was devastated, as I was convinced it was the end of my hair. Treating lice (which are generally harmless) in normal times is merely an expense and and annoyance, involves either chemical treatment, or non-chemical treatment that includes an intense comb-out with a fine tooth metal comb. And not treating was of course not an option as I could not put others at risk. And it was a Saturday night when I discovered it. I went for the non-chemical treatement, and it seems to have worked out OK for me (fortunately it was early enough that the hair loss from treatment was not too bad) although I am only 10 days PFC at this point so not out of the woods yet.
SO, for those of you with school-age children, please take extra precautions to prevent your child from bringing lice home. Wearing long hair up (and possibly using a repellent like fairy tales), keeping coats and hats separated from other children's belongings, etc. My daughter's school has been helpful with this now that they know about the danger to me. Also important is to check your children's heads regularly to catch it early, and avoid sharing a bed with your child(ren) if at all possible. If you PM me I can send you info on how to do check your child properly for lice.
Sorry if I have scared anyone, but felt it was important to share.
Good luck all!!!!
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red332- that is actually my nightmare scenario! Before cancer and my baby I was a school nurse and always in high alert for lice, now I don’t know what I’d do. Thankfully my son has short hair and only goes to preschool twice a week.
Question out there, I just got back from a 3 day stay in the hospital. My fever got up to 103. Is my hair doomed to fall out now? It was about 8 hours after I finished with the cold caps, then BOOM! Fever Is there any hope for me? It seems like my hair is falling out more, but maybe it’s just the “big shed”. I’m due for some good news, is there any?
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Hi! I hope you all had a great weekend! I will be starting chemo this month and the hospital I go to has the dignicap system. I have heard that Dignicap is more effective on TC chemo patients than onAC+T chemo patients. Have you heard this? I would like to use the cold cap but I don’t want to go through the hassle or spend the $$ if there is a very low chance I will keep my hair. Any information is greatly appreciated. Thanks!
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Pbello - I'm using dignicap on EC (similar to AC). I'm two weeks after round 2 and still have enough hair to go unnoticed (I notice). I also started with a bushy mop on my head and estimate that at least 50% has shed. For now, for me, it was money well spent. I still have to tackle the 12 taxol. My issue is whether or not I can freeze my head once a week. That might be the biggest challenge.
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Amelia01 - that’s so encouraging!! Thanks so much!! I really want to do the cap. I worry how my small children will react to my appearance. 12 weekly freezes looks to be difficult. But you’ve come this far, you are a strong woman who can tackle anything obstacle.
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Erob321, I wanted to encourage you after your hospital stay that you are probably just having "the big shed" and you should do fine, so please do not add this to your worries. I am sorry you ended up with a high fever and hope measures are in place for your next round. I managed 16 chemo infusions w/o any infections/fevers and saved over 50% of my hair with PCC. Glad to say that I am 6 months PFC and have a very thick head of hair!! I did cut it shorter after chemo as the ends were looking straggly and the end result is a cute, but shorter version on me. YOU CAN DO THIS!! The cold caps work.
Anne
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lovesgreenthings- thanks for the encouragement! I will hopefully one day be where you are and still have most of my hair. I’m still shedding, but I feel like it may have let up a little. This makes me feel a little better!!
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I’m going in for round one of chemo tomorrow. Got my PCC and dry ice. Planning to ice hands and feet during taxotere. My husband is going to get a workout. I’m going to FREEZE. I’m not supposed to wash my hair until Friday. Should I be combing it daily to detangle? It’s going to be one big snarl by Friday if I don’t. This is going to be rough. I wash my hair every day. I haven’t gone 5 days without in my life. Gonna be gross
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Rockcity, using only the very wide-toothed comb, I have been combining my hair just to keep it somewhat in line, but only very gently. Like you, I was used to washing my hair most every day, and am still getting used to washing it no more than 2x/week. This morning, I took a shower (using the hand-held shower head) and turned the water temp down to barely tepid with light water pressure and then just wet my hair so I could comb in some shape (I *have* to wait two more days to wash it, as I have a dinner meeting with a client). My hair brush has been put away to avoid the temptation. At the suggestion of others on this thread, I've also used dry shampoo on those days where I just need to absorb some of the oils.
Good luck w/your 1st round of taxotere. I also iced my fingers and toes. The nurse at my infusion center recommended continuing the finger/toe icing for an additional 15 minutes after the taxotere was finished.0 -
Thanks for the help Shlomit. Maybe dry shampoo will help me feel a bit more human between washings. Is it okay to use dry shampoo on chemo week. My hair already feels icky and I can’t wash it until Friday. I’ll be careful with the comb but if I wait days to detangle it, I’m not sure it will detangle at all. I sure hope these PCC work!
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Rockcity, your hair WILL get used to not being washed as much but it will take a few weeks so be prepared for icky hair for a bit. I rinsed my hair gently after each chemo session and used a wide tooth comb to detangle it. That helped a lot and I am a successful PCC from last year at this time. I found that a spray on conditioner helped too. Avoid anything on the scalp, that is the golden rule, but rinsing in tepid water did not have any adverse effects for me.
I like that a lot of you are icing your feet and hands during the taxanes, it really does help stave off neuropathy. I have just a bit in my toes still, not worth mentioning really. I believe that icing helped a lot.
Good luck to all that are starting chemo this month! I started last year on 2/28 and it was MUCH easier than I ever imagined. Do everything they say to do for SE's and keep capping, it really works.
Anne
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Pbello, I used Dignicap for 4ACs + 12Taxols. My oncologist had also told me that the hair doesn't fare well under that regimen. I would say I lost about 60% of my hair, and about half way through my treatment I started wearing a wig because it was thin and I thought it made me look sickly (also had a little bald strip on top). But...even with that, I am glad I did the Dignicap. I only wore the wig about 4 months. My hair started growing back during the Taxol and by 3 months post-chemo, I had enough thickness to get a cute pixie cut, have my hair colored, and ditch the wig. I was never anywhere close to being bald....but I had long hair and lost so much volume. Do be sure that your chemo nurses put the pad on top of the cap to ensure that cap has good contact on the top of your head. I had that little bald spot because I didn't always have good contact there. So, I did not have the results I had hoped (keeping my long thick hair), but still worth it to me for what I did keep. Good luck!
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Regarding eyelash/eyebrow loss--I used Latisse for 2 years prior and all through chemo but 6 weeks PFC, bam! That was in March then again in July and wait for it...again in October. It's not ALL at once the 2nd & 3rd time. It's over a few weeks. There are small ones underneath so they come in much faster, like 4-6 weeks instead of 6-8 like the first time, no "bald" spots where you can see the lid. I just couldn't fit them in my eyelash curler they were so little. But I continue to use Latisse and they are AMAZING when they are there! Also, my hair growing in is SO THICK! I mean, I know I had thick hair before, so maybe I just got used to really thin hair, but I cannot stop touching my hair. Just wish it was longer!! This 1/2 inch per month business sucks!
Red332--I got lice a couple weeks before chemo (along with my 2 girls who picked it up from a neighbor at a weekend girl scout event). I paid a TON of $ for the professionals to do comb outs 3 times in a week with that tiny little comb. I knew my hair wouldn't survive if it'd happen during chemo. So glad you are PFC!! Best of luck to you!
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SoniaL - thanks! Looks like you got good results for the AC+T treatment. And wow, you made it through the 4 + 12 treatments with the coldness of the cap! That’s great! I worry i won’t be able to take the coldness on my head for even the first try ;
I’ll make sure to ask them to put the pad for good contact. I heard the Dignicap has this issue with tone top of the head. I think I read somewhere that some patients even put weights on top of their head.
I heard I should wet my hair and part it down the middle before putting the cap on. Also that i should wash it right before going for the treatment. Are these correct statements?
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PBello - Here is a link to the patient info for Dignicap, which also contains a hair care brochure with detailed instructions re washing beforehand, etc. Did they not provide this to you at your facility? https://dignicap.com/patients
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So I bought a rebounder to help my lymphatic system and today did my first session. Damn if the weight of my hair struggling to defy gravitydidn’t pull a bunch of hairs out!
This is like a bad comedy!
Pamela - so do you recommend Latisse during chemo or wait until after?
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ladies, I have a question.
I've been reading about adriamycin and its potential negative effect on the heart (I.e. congestive heart failure 😨 ) that sounds scary. Has anyone gotten a decent answer from their MO about chances of long term effects coming to bite us down the road? I'm getting slightly freaked out. I start Feb 9!
Hugs from me ❤
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Hi cold cappers,
I just had round one yesterday with my PCC. Went to chemo well hydrated and fed. Had the anti nausea preinfusion. All was well until that first cap went on. I don't know if the coldness of that cap shocked my system or what but I got immediately nauseous, vomiting nauseaous. Took an Ativan but that nausea lasted throughout all 18 caps. Each cap change immediately made me sick. I’d recover then it was time for the next. Bless my husband for changing those caps even when I was feeling out of it. My hero. I felt better but worn out as soon as the last cap came off.
I haven’t noticed any other cappers having this problem. Anyone out there? Any suggestions on what I did wrong or what I should try next time ? Right now, I’m a little freaked out about the caps for five more rounds, but I really want to try to save my hair.
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