Cold Caps Users Past and Present, to Save Hair
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Congratulations to both of you! You are done!
I have been using the PCC bands for my eyebrows and while they have thinned and gotten very light looking - I'm blonde - I still have them. I have been losing my eye lashes which itch and are thinning out. They look kind of spikey as so many have fallen out.
I dearly hope that like ali68 I will stop shedding so much after chemo. My hair has thinned considerably, but looking at it just now as it air dries after being washed, it looks surprisingly full. No one could tell I have been on chemo, which is amazing to me. I am so happy I found out about cold caps on this website. Thank you to everyone who posted about it.
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Repost:
Ladies,
12 weeks post chemo. Just took off 2 inches and colored today. What a difference. Still too thin to wear down but very nice with messy look up in a clip.... I am very happy and, surprisingly, emotional. I look 15 years younger....
The shedding continued for 10 weeks post chemo. lost the most hair after chemo was finished. I can report that I lost no hair today and even used a round brush for a little lift on a cool setting. I feel like I reclaimed a little piece of myself today.....
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How did you colour it and with what? Is it permanent or semi?
My hairdresser won't touch my hair till six months.0 -
Congrats ali and bunsbuns! I'm definitely shedding more PFC. I am now just day 22 post, so it is very early. Even so, I still have good coverage and no one can tell.
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I used all natural hair color: naturetint.... My hairdresser was very nervous too and we did it when the shop was closed and drank lots of champagne!!!! geralyn told me 3 months post for a "vegetable" dye and 6 months for the traditional hair color etc.... I am afraid to start the tamoxifen.... Can anyone ease my mind on its effects??
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Tamoxifen, I think that's what I am going to take as well. Looking at the SE I get hot flushes now and are worse with a glass of wine. Weight gain it says - won't want that. Apart from that it sounds ok. Can you take it if your periods have stopped as mine haven't returned after chemo. I think that's why I'm getting hot flushes.
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From what I understand, you can take Tamoxifen if you are pre or postmenopausal. There is a chance your period will come back (I'm in chemopause, too, BTW, and have hot flashes) - so I think many onc's will start you on Tamoxifen if you were premenopausal prior to chemo, and monitor your hormone levels over time. Some stay on Tamox 5 full years, others switch to an AI after 2 or 3 years if they stay in menopause.
AI's (aromatase inhibitors) can only be taken by those clearly postmenopausal.
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ali68 and bunbunsmom: I was on tamoxifen for 1.5 years before rather quickly going completely through menopause (in about three weeks!) and switching to anastrozole. Do yourself a huge favor, and *don't* read ahead on the tamoxifen SEs list. It'll terrify you! There is a wide range of potential SEs which you may or may not get, and in varying degrees, and for variable lengths of time. I did not put on weight on tamoxifen. I didn't have tons of hot flashes, but I quickly realized they were almost always brought on by sugar or alcohol. I did get occasional leg cramps (charley horses) at night, but extra potassium in my diet fixed that. I did experience the blues from it, but kept active and positive and refocussed.
I too was terrified of tamox, having done myself the disfavor of "reading ahead". I waited probably a month before somebody, thankfully, posted on the list that she'd been taking tamox for 2 years with no SEs. I was so relieved! Finally started taking it.
My MO advised that the first three months or so would be when I would experience the most intense SEs if any, but after that the body adjusts and things calm down. That was the case for me. Start it, and allow for an adjustment period but don't give in to psyching yourself out. If and when you have any SEs, be candid with your doc so you can manage it together. (And I continue to advocate for acupuncture and nutritional management, which worked beautifully for me through chemo and also through tamoxifen. Can't recommend it enough.)
Hope this helps,
Susan
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Thanks sebm9, very good advice I don't think my periods will return and I'm with you on the sugar and wine.
Coloured my hair with henna cream and left it on for 15 mins. Good news is the colour is warm and has a great shine. Bad news I think I should have left it on longer as not all the grey is covered. You have to look very close to notice a few stray hairs but I'm very pleased. Feels great to have my hair and have it look good, all need now is more hair haha.0 -
Re: Shedding - I washed my hair again today and after keeping a worried eye on the bathtub mat was fascinated to realize that very little came out. In fact, less than I used to lose during a normal shampoo before starting chemo.
I've been keeping the hair I lose at each washing so I can compare. Sounds odd, but it's been interesting. I also kept a sample of what I normally lost in a shampoo pre-chemo which has been helpful to use as a control to judge post-chemo hair loss against. I definitely lost the most just before and after my third T/C infusion. I go for my fourth and last infusion on Tuesday.
I also just realized this evening that what I thought was dry or scratchy skin at both of my frostbite sites are actually lots of short new hairs. They are very spiky feeling when I rub the areas so I have thought for days that they were some sort of extra dry skin that still needed to come off. My husband checked for me and said they are definitely hairs. I hope I won't lose them after this next treatment. They are sure going to look funny as they grow straight up.
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Hortense, that's all really interesting! I barely shed anything until a few days after my 2nd TCH where the shedding was sooooo extreme I thought if it continued at that pace I'd be bald for sure. Now I'm 9 days post and today there was the same shedding I had pre chemo. Yesterday I discovered a bald spot over my right ear. Its only big enough for me to notice but I realize (I hope) that all that extreme shedding was the bald spot and maybe the rest of the time will be typical shedding without so much volume. Here's to hoping!!
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soltantio~
I used the Penguin Cold Caps about 3 years ago and only lost tiny bit of hair right above my ears on both sides.
No one would notice unless I put my hair up in a ponytail.
Using the Cold Caps made going through an unbearable experience somewhat bearable.
Having my hair while going through chemo actually helped me to be more active with my kids etc.
This is just my opinion but I will always be thankful that I was able to use them.
My oncologist researched the heck out of them before allowing them in her practice.
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I used PCC's. I know they may cost more but you get what you pay for. I did not want to take a chance. I have read of lots of good successes with PCC's. I am not as familiar with the other caps.
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Cold cap not recommended by my onc team because the thinking is that if the cold keeps the chemo from the head (thus saving the hair) it is also keeping the chemo from killing off any cells that may have traveled to the brain. I had tacotere four years ago and my hair did not come back. I hope and pray that your experience is better.
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Cold cap not recommended by my onc team because the thinking is that if the cold keeps the chemo from the head (thus saving the hair) it is also keeping the chemo from killing off any cells that may have traveled to the brain. I had tacotere four years ago and my hair did not come back. I hope and pray that your experience is better.
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iamever: I am so sorry that happened to you. There is NO risk of scalp mets due to caps; in fact, research shows that there is *benefit* of using caps in terms of potential scalp mets - the risk is so incredibly low as to not matter [you have 100x greater risk of developing leukemia from your chemo, than from developing scalp mets. Next time anyone's medonc challenges them on caps, ask them if the risk of leukemia suggests they shouldn't do chemo. They'll tell you no, of course not.] And as you have found, there is a 5% risk of no hair regrowth due to taxotere, which the pharmaceutical company does a magnificent job of covering up [I think that's actionable, btw.] Shame on any onc team that is backwards enough to not recommend PCCs. I continue to be on a mission to let women know of this option, which few oncologists know of despite its wide use in Europe for decades. Thank you for saying something!! If anybody would like a list of the medical publications which support use of cold caps, please PM me with your email (the research is definitive and goes back to 1973; I researched this thoroughly before I used the caps. And for what it's worth, my DH co-wrote a Nobel-prize winning physics paper and read through all of this also).
Soltantio: I recommend only PCCs, not the other caps, which do not become cold enough, nor stay cold enough long enough, to be effective. There have been a handful of women on this list who have had success with the other caps, but I have encountered legions more women who had failure and wish they'd done the PCCs. PCCs are more expensive (they're rented, not purchased) but the cap design is FAR more able to withstand the temps needed to save your hair; plus, Frank Fronda, the PCC inventor, is the person who has come up with the hair protocol that makes this all work (temp, hairwashing, no chemicals, flushing to detox, taking silica/biotin/iron, etc). There is a very narrow window in which we can save our hair while going through chemo: -30-35C including four hours post-infusion, plus the specialized hair care protocol.
I've found that even the machines that have lower temps or less time are not as effective as the Penguin Cold Caps (freezer or dry ice method, either).
Please give yourself the very best possible chance at this. There is not guarantee, but hands down the method I recommend -- in fact, the only method I recommend -- is PCCs.
Susan
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There is a website "Taxotears" (A Head of Our Time) which is full of stories of ladies who never got their hair back after using Taxotere.
I was able to read that site before I did chemo.
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Yes we all loved the cold caps and the feeling of not being bald. I am most distressed that there is no handbook or "normal" side effects post cold caps. I can see I am not the only one who sheds more hair after chemo than during. Eight weeks after and my poor thin hair is still coming out in strands daily. Any insights on when this will end or helpful hints?
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It is really strange Janeoz~
I actually shed more hair during chemo than after chemo.
Reading this thread it appears that I am not "the normal."
Although, back when I first started posting I do not recall many ladies talking about after chemo shedding.
I wonder if anything has changed with the Caps, timing etc?
I was on TCH...
Took lots of iron as I was anemic.
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Me too Ang. --Hi again, by the way...nice to see you
.I shed more during chemo. I didn't really shed post chemo? I came across a pic of my hair 2 months post chemo. It is thin, but still there! I would post if I could figure out how!!
My littlest one just told a balding friend that "cold makes your hair stay on better". I started howling.
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Good to see you geewhiz!
I am wondering what the difference is/was with shedding?
They should really try to track that information...
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Janeoz, I am also 8 weeks pfc and shedding like crazy. It is worse when I wash my hair as well, as it is so knotty. I would be interested in any insight as well, as I feel like I have done everything right. Also taking silica, biotin and iron.
I have contacted geralyn and frank, but really didn't get a valid answer or insight. It really seemed as if they didn't know.
It's been tough to feel better physically and move on when this is still such an issue. I know I should be more grateful that at least I have hair, and I am but it's very stressful.0 -
@leveled-You hit the nail on the head!!! They don't know! Believe me, I have had more experience with use of the Penguin caps than anyone within their own company. I didn't want to post anything negative about the company because the caps actually do work, but you let the cat out of the bag. The company is poorly managed which is a shame because their product is so very important to the well being of so,so many. MSC-Medical Specilaties of California/Penguin Cold Caps has their own discussion 'forum' as well as a Facebook page. The response time to questions posted can be weeks, if answered at all. I have been collecting data with those I've helped with the caps. There are just too many variables to try to account for. And that's if the women using the caps actually follow the suggested guidelines and don't deviate from them. I created a website for women using the caps to go for proper instruction http://www.penguincoldcap.net/
Hang in there, the shedding eventually stops. Feel free to send me a private message if you have any questions. Or reach me by email at help@penguincoldcap.net
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shedding: I really didn't shed at all PFC, and only lost hair after my first treatment, although I think that's unusual. I have a small head, and very fine hair, and I think that's why I had such little shedding...but, who knows? PCC doesn't, as makingway says above. The company IS very poorly managed, with very uneven customer service, and no concrete data to answer questions or make predictions. This forum is really the most helpful.
Despite the lack of info from PCC when I had questions, I would use the caps again in a heartbeat. They made, and continue to make, a huge difference in my recovery. I retained my long hair! I would urge any woman considering them to ask questions here and use these wonderful women as a resource.
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I find it interesting that those with brilliant ideas/skills (ie. cold caps, some surgeons' offices I know of, etc.) are so lacking in the management side. You'd think they'd at least hire someone competent to run the nuts and bolts of the operation, LOL. However I've seen it happen so many times.
Yes, this forum has been incredibly helpful to me, and I'd use the cold caps again despite the disorganization I've also noted within the company.
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Thanks Ang7 and soltantio: I think I'm glad I didn't know about that list when I was making my decision whether to do chemo! Sounds like this would be a class action suit. MOs and Big Pharma absolutely should not bury the potential for permanent loss. And it makes me even more adamant that all women should know they have the PCC option -- especially if on one of the taxanes as part of their chemo cocktail.
Cheers,
Susan
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Yep we are all saying the same thing...I wrote to frank about some after care help and heard nothing...do any of you know erkkie who is a hair expert in CA? She is on the pcc web site. I sent her the email too and she replied only to confuse me all the more as she contradicted franks once a week shampoo plan. Yep I have been taking silica biotin and iron too. We played by the rules and now I feel bummed that things aren't as rosy as promised. I just don't know how much more thinning I can take.
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I created a separate thread awhile back called "Cold Cap Usage Tips", to help the newbies to find quick answers to FAQs. This thread has gotten so long that it's daunting to plow through when you need info quickly. I urge you veteran gals to add your insights if you can for those who are just starting on this journey...
http://community.breastcancer.org/forum/6/topic/786991?page=1
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You have to look at the company that makes the caps as a very small one. Frank comes from a very wonderful place of wanting to help people, but he is not young and there is only one of him. To take it to the next level needs the FDA and other approvals and then perhaps going larger or another company taking over and expanding the company. Right now they just have us, their fan club, and the hope that other women can have the choice to keep their hair. I think that chemo is drug and everyone reacts differently to it. For instance, I was very constipated, while others on the same drug had different side effects or even the opposite problem- diarrhea. It's probably the same with the hair. It is not rocket science- no one knows exactly how your body will react. I just know that you have a whole lot better chance of keeping at least some of your hair if you use the caps. Good enough for me.
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Julia1969~
good post. You hit the nail on the head.
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