Cold Caps Users Past and Present, to Save Hair
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2cats - I had the same surgery as you, but prechemo - back in October. The surgery itself was pretty easy; I had it one morning, stayed in the hospital overnight and went home around noon the following day. And I am pleased with my results. Your healing should actually be quicker than mine, since in my case the chemo delayed it a bit.
Most useful pre-surgical item for me was a wedge pillow that allowed me to sleep on my back in relative comfort and prevented me from rolling onto my side, which is my more usual position.
Shlomit - Congrats on being officially PFC! And best to you as you move forward with next steps.
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Thanks Magari-we actually bought an electric recliner (1.5 size BIG boy) with tags on from a local guy on Facebook marketplace. The plan is to leave tags on & resell it a month after surgery. My PS recommended a recliner highly.
From your lips to God’s ears a quick recovery! I am telling everyone who says they want to pray for me to ask for “one and done” and “all clear”.
I know we have been straying from cold capping posts a bit but we are still here and happy to answer any questions. Fire away...
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Hi to all, have not posted in a while- once treatment over in Dec 17, just wanted to get back to normal- and I have pretty much, but wanted to share my results using PCC while receiving 4 rounds of TC from Aug-Oct 17. I wore the caps for total 7 hours each infusion-was hard to hang in there the last hour, but my daughter was my partner and a great encouragement. I has shoulder length pretty thick wavy hair- I estimate I lost 20% from all over shedding during the 2 months of in infusions--no bald spots and no one other than my daughter could tell..
What I wasnt expecting was to keep shedding for sooooo long--5 months ! PFC-I only washed my hair every 5 days and did not color all over for 5 months- just kept touching up my center part roots. My eyebrows and eyelashes thinned about 2 months PFC but quickly grew back , so all in all I kept about 75% of my hair- made all the difference emotionally for me with getting thru treatment. For me the trick was making sure the caps were tight all over.The first infusion I got freezer burn on the top of my head because the caps were too cold=there is a learning curve- also the pelleted dry ice is easier to keep caps uniformly cold over slab-
I definitely recommend cold capping and using PCC--remember this too will pass- I breezed thru radiation- finished at xmas time and am now on letrozole past 2.5 months- no noticeable side effects so far--will be enrolling in the Pallas Trial for adding in Ibrance as a preventative in Stage 2 dx, but life is back to normal-what a year it has been--but I made it and you all will too!!
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kaylie-How much shedding did you experience?
I am 5 weeks pfc & am still shedding light to moderate daily which is a bummer! If any previous users check in, was there anything you did or used that you believe helped in slowing or stopping the sheds pfc?
On the up side, I am seeing baby bird fuzz on crown bald spot
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This was posted on the website last week, studies backing up cold capping!!! :
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I was very gentle with my hair- used only wide tooth wooden comb,sulfate free shampoo every 5 days with warm water, only flat ironed the ends-,used a silk pillowcase to cut down pulling on hair, and either air dried or lightly used dryer on low setting, the most shedding occurred each time I washed but was probably building in between shampoos. it was quite disconcerting that it went on for 5 months after working so diligently to use scalp cooling. Everyone is different but my hair follicles had to heal and regenerate in their own time-I was just along for the ride--but is common to take several months for that- so be patient- you are thru the toughest part--
No body thought my hair looked any different the whole time- only I and my daughter could tell--the hair I did lose thru shedding all over and along my hairline is now about 3 inches long so the top of my head feels thicker as I go along and I feel more normal all the time--life does go on for all of us on this journey we never signed up for---kaylie
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I begin chemo bright and early tomorrow morning. I will be scalp cooling with the Paxman System. I’m anxious to say the least!
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Tough Cookie,
You can do this, girl!! For me, the first chemo was the hardest because I didn't know what to expect. Here are a few things that will help tomorrow go smoothly:
1. I took 4 Advil about 30-40 mins prior to the cold cap. This lessened the "ice cream headache" tremendously! I didn't do this for my first two infusions and I cried through that 20-30 mins of pain. With my last two infusions, I took the advil and it was a very brief headache and then it was gone.
2. Electric blanket! Wrap around your shoulders and body. They will wet your hair and you'll get chilled otherwise.
3. Keep drinking water and continue to drink lots of water through the next seven days.
4. If you have a Nuelasta patch-ask your onco for pain meds. Again, I didn't know to do this for the first infusion and I had some serious bone pain on days 5-7.
5. I felt like I had a bad case of the flu on days 3-5. Be prepared, but also know that it will not last forever. When you are in the thick of it, it feels like it will never end.
6. Walk if you can, even if it just to the mailbox. It helps.
7. Know that your tastebuds will change temporarily. You may not want your favorite foods. Keep drinking water even if it tastes funny. Add lemon if you need to.
8. Accept help.
God bless you!
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hi everyone! I just finished my last round of chemo yesterday and all the nurses sang a goodbye song to me. It was really sweet. My husband got severely sick with an URI and has a fever over 102 so i had to pay the PCC rep to come in for 10 hours and do my last cold capping session. It was expensive but i haven't lost much hair and i didn't want to make this all for nothing. Its to soon to tell how much more hair i will lose but i've probably lost about 15%. Nobody can even tell at all. There is one thinning spot under my top layer of hair and it is a little thinned out overall. I wanted to let everyone know that this can work and is worth all the hard work. I tried to do everything by the book. I only wash my hair once a week, i only comb it once a day, i do not take hot showers or baths, i always wrap it in turbine when i'm in shower, i use no products on my hair or heat. My hair overall looks dry and because i can't style it, it looks stringy but most of it is still there and i am grateful for that. I highly rec PCC for cold capping if anybody is coming onto our thred and wondering which one to do. It was more work but worth it.
I want to thank all of you for your encouragement and suggestions, i have taken them all and used them. Also all the good vibes that these posts put out. It really helped me get through it. Stay strong ladies and we will all get through this!!
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Good for you Sarah, I was dx'd with stage 2-also had 4 rounds of TC- did not choose the A part- the Adriamycin, as concerned about the possible cardiac toxicity as I have had a cardiac risk factor of mild hypertension- well controlled for 15 years-and in all honesty after researching the more toxic hair effects of Adriamycin I knew I would have less success cold capping with hair retention. My doc explained that the more aggressive ACT has about a 3% more effectiveness than the TC-though some studies are showing that is not always the case, but it was the right choice for me- To lose my hair - it is to my shoulders-and all the associated consequences of that physically and especially emotionally- would have made my treatment journey so much harder--I am 68- had I been 48 I might have chosen differently-am at peace with my choice and that potential 3%.
Do be prepared to continue shedding for some time----continue to be very gentle with your hair and don't freak as you see more come out each shampoo--hang in there-it will eventually slow down and stop--you will feel more like yourself each day now going forward--hugs,Kaylie
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Hi all! Thought you'd find this recent Breastcancer.org Research News article interesting:
Scalp Cooling Is Safe, Effective for Reducing Hair Loss Due to Chemotherapy, Study Finds
March 30, 2018
A retrospective study found that scalp cooling was effective and that the risk of scalp skin metastases was extremely low and should not interfere with the use of scalp cooling. Read more...0 -
Hi all,
My MO wants to add Perjeta to my next 3 chemo treatments and for the remainder of a year afterwards with Herceptin. I have already had 3 treatments of Taxotere, carboplatin and Herceptin. I am hearing from my cold cap rep that perjeta causes hair loss. I didn't think it did. For all of you that coldcapped and used perjeta, what were you told? Did you cap through perjeta? Also, what the heck do you do for the remainder of the year with just Herceptin and perjeta? I’m freaking out. I’ve been working so hard to try to save my hair
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Rockcity - I received Perjeta and Herceptin along with Taxotere and Carboplatin during my chemo (TCHP.) I asked the nurses to order my meds TCPH so that I was capping during the Perjeta as part of my post chemo time, just to be safe.
Now that I am finished with chemo (hooray!) and receiving Perjeta and Herceptin only, I've shipped the caps back and am not worrying about further hair loss.
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Magari-what did your cold cap company say about capping during perjeta? Did they think it causes hair loss? I am using Penguin and they think it causes hair thinning at least while your hair is compromised with chemo. Also, did you have a problem with diarrhea with perjeta?
Congratulations on finishing your chemo. It must be such a great feeling
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Rockcity - I didn't call Arctic to ask about hair loss with Perjeta/Herceptin only, but I did do some research on the subject. Most of what I found indicated that thinning is minimal if any (and many, if not most of us continue to shed PFC anyway.) https://www.mybcteam.com/questions/5582eb7a6bcd614b1b000ac1/hair-loss-and-perjeta
There is no way I could justify continuing to pay for cold caps for another 8 months, and it gave me great pleasure to ship them back immediately after I completed chemo.
I am 25 days PFC as of today, so have only had one Herceptin/Perjeta only infusion so far. The Perjeta infusion is only 30 minutes. With another 30 for the Herceptin, the entire infusion is complete in an hour! I enjoyed being able to relax and read, which was of course impossible during cold capping. I've had no real side effects to speak of - maybe a couple of days of loose stools afterwards, but I had borderline IBS before BC, so that's not unusual for me.
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RockCity I have been on Herceptin and Perjeta alone since January and I have had no hair loss only growth, 4 inches since then. I know one of the side effects of Perjeta is hair loss, my oncologist confirmed this, but when I spoke to the oncology nurses they said I should not have a problem with hair loss and lo and behold no problem at all. I did Cold Cap during TCHP, unfortunately it was not successful but I do believe that my hair is coming in fast, quick and thick because of the cold capping.
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KCMC - I’m glad that you are doing well with the Herceptin/Perjeta combo and that your hair is growing back quickly. I couldn’t find anything that shows Perjeta itself to cause hair loss. Documentation that states hair loss includes Docetaxol or another Chemotherapy drug with the Perjeta. It seems like the it’s the chemo drugs that cause the loss, not the Perjeta My Oncologist said that it does not cause hair loss. I ended up speaking to a rep for Penguin Cold Caps in California. Her best friend was part of the team that invented Perjeta. She said that it is not a hair loss drug and that I do not need to cap during Perjeta. I do, however, need to add an additional 30 minutes to an hour at the end of capping ( 5 hours, ugh) to let my liver process the four drugs during chemo infusion. For the Herceptin/ Perjeta only infusions, NO capping needed. By now, you already know this though.
Hope the rest of your infusions are a piece of cake
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KCMC- you said that your capping was not successful. How much hair did you lose on chemo
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Hi All!
I’m going to go have my third round of T&C next Friday the 13th -fitting? 😬. Anyways, I had a huge shed after round one and am experiencing much less after the second so far. My question is, did any of you get a small trim between infusions? I’m scheduled for one tomorrow because my ends are so dry and damaged but now second guessing if it’s safe to do at this time?
Thanks so much
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ddthorton- personally I would fear anyone tugging on my hair. Maybe just a dry trim if you really need it.
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RockCity, I cold capped through TCHP and lost about 50 percent between infusion 5 and 6. Very little hair loss before that. I finished my last infusion on November 8th and I still had a good amount of hair left. Between November and January is when it all fell out, but the good thing is that at one point or another I almost always had hair. I did purchase a wig just in case and did wear it through January-April. I just got my first haircut and color and it doesn't look bad, hey it's hair lol!
I don't regret cold capping at all, it made things normal for me and my kids and I truly believe that my hair has come back faster and thicker, yes it is curly but I'll deal with that down the line when it gets longer.
Good Luck! I am sure everything will work out for you. Sending you positive vibes!
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ddthornton -I had a dry trim of 2 inches by my very understanding stylist. She even used my wide tooth comb 1 week post chemo. No additional shedding noted. As long as there is no stress or heat to the scalp and follicles my opinion is that it will be fine.
I even cheated during treatment sometimes using a blow dryer on low cool setting (being careful to only hold hair out, not pull) and also used a curling iron on the ends for work. Never noticed additional hair loss.
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Hi, I’ve been stocking this site for a while, but this is my first post. I’m going in for round 2 (of 4) of T/C chemo on Tuesday. I’m doing the Paxman cold cap. So far, my hair is doing ok with minimal loss. I’m not washing it much (every 3 days), but it is super itchy, and the shampoo I’m using doesn’t feel like it’s even cleaning my greasy hair. I’ve used the Paxman shampoo and also Aveeno baby shampoo (Paraban free, parfume free). Any suggestions for fighting that itch without ripping my hair out
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Curly-head, I am 9 months post chemo and a successful PCC user. Your scalp is not used to less washing right now so for the first month it will excrete more oil and frankly will not look great as you described. Mine was itchy too, as you described. I did not wash more often than recommended but I did "rinse" my hair in between washings which helped. Tepid water and a very soft stream from the shower head. That helped. My scalp eventually got used to less washing and now I can 4 days between shampooing which is a nice perk. Keep up the cold capping, you will not regret it. I lost about 40% of my hair with my tough chemo, mostly during days 22-26 on the first round, but it was not that noticeable and it started growing back during taxol. Hope this helps!!
Anne
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I encourage anyone that has finished chemo in the past year and at least a few months PFC to post before/after pics in the "Cold Cap Before and After Photos" forum! We are all using different systems and have different regimens, it's be nice to pay it forward and help the ones trying to decide to cold cap to see our experiences.
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I am going in for treatment #2 (of 4)tomorrow. I’m on a 21 day cycle. Ijust started shedding a lot. It’s really hard to see the big pile of hair in the sink. Does the shedding ever lighten, or is this it? Should I expect to lose this amount of hair every day from here out?
I got my wig I ordered yesterday and I hate it. I really hope I don’t need it.
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hi curly head,
I’m also using Paxman, and my next infusion is on 4/19. my hair is also curly
I also feel like the cleanser in the Paxman kit doesn’t really wash the hair as it’s hard to get a lather, but I guess it’s less harsh on the hair so I’m going to continue to use it. I used to washing my hair often because it’s curly ....so not washing for a week is challenging and i wake up with bedhead. Can’t style it because I am trying to baby it. Do you feel the cap is really cold? I find it was cold at first 10 minutes not sure if i just got use to it 0 -
Curlyhead- most people including myself seem to have 1 big shed around day 21.. then after it slows down and the rest of the time it's a slow shed. But I do feel like the range one loses with the big shed seems to vary from person to person. I hope yours slows down soon.. i know how hard it is to lose it!
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May 07,
I got a silk pillowcase from Sephora for $45 - which is a great price for a silk pillowcase, and it definitely helps with the tangles. Ugh, I feel like curly hair is just tougher. Those curls just wrap around one another and cause extra tangles ( I used to straighten my hair daily, so it's just so different).
Last time the Paxman cap bothered me for the first 20 minutes, but I'll take Advil or Tylenol before I start this time. That might help.
Also, for my hour on the Taxotere, they had me hold ice and rest my feet on an ice pack to help prevent neuropathy. This was horrible, but if it helps me keep my nails, I gues it's OK.
My nurse navigator assured me today that even if I do get bald spots, they'll regrow right away. Without the cold cap, “I'd be like a cue-ball for 3-6 months afterward," so that made me feel better. She also assured me that keeping 50% of my hair is considered a success.
Hopefully the curls will cover the hair loss better
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curly head,
I did purchase a silk pillow case and also a hair net so my hair isn’t all over the place when I sleep...it’s good because the hair can still “breath” in the net. I have also heard from many cold cap users that the hair does grow back faster when you cold cap...I am icing hands and feet and yes it is torture!!y fingertips are feeling different after first infusion so I will bring it up to my MO...hopefully it’s temporary. Next infusion in one week
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