Cold Caps Users Past and Present, to Save Hair
Comments
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Fo Anniemomofthree, and others contemplating using caps:
6 rounds of taxotere and Carboplatin, from Nov 09-March 2010; COLD caps will work, do work: have confidence. The shedding is annoying but it is just that.. shedding.
and, my hair 10 months since tx, is thicker than EVER before, too. (I posted re this phenom above; anyone notice such an effect, Ang? or Susan?
Please PM me for cold caps tips, haircare tips and tips for combating Side Effects of all kinds.0 -
MDG... before you commit... check with your oncologist. My doc didn't want me using the caps for fear of scalp mets... as much as I want to keep my hair, and would be willing to pay $1800 to rent caps for 4 months, I really don't want scalp mets... so I am forgoing the caps... And of course there is no way for me to know if I have made the right choice... my hair is a big deal, as it is to all of us... harder than my surgery for sure.
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bdavis
plaese read this.. http://www.washingtonpost.com/wp-dyn/content/article/2011/01/10/AR2011011006036_4.html
It addresses the scalp mets "issue" very well and defuses it specially well.
Physicians who invoke this "warning" seem to be the LEAST informed about efficacy of coldcaps, which is very sad.
The article is also the best and most literate coverage of coldcaps to date, in my opinion.
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I hear you... but that ship has sailed for me now... I hope it all works out for everyone... and I will wallow in my baldness
... which should be coming anyday now 
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bdavis: Please do NOT wallow! You have made a choice, which is an amazing thing to be able to have with this side effect of chemo! Whether or not women choose to use the caps, it is now a choice, rather than something one has no control over. That in itself is indescribably huge! The most valuable thing about PCCs isn't the hair, it's having control. It makes us conquerers of our cancer, rather than survivors of it, if you know what I mean. Congratulations on owning your decision, and good luck with your treatment. You will do well.
Best,
Susan
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Hey ladies~
I was just contacted by someone who lives in my area and is starting the Penguin Cold Caps. Hubby and I are going to go over and show her and her hubby how to use them. Oh how I wish we had someone to do that when I started using them...
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thank you susan!!!
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To all who asked question about body hair loss -- it is very individual. I was still waxing my legs during chemo -- that was just wrong! I didn't loss eye lashes until PFC. I never had much for eye brows and they seemed to thin PFC along with the lashes.
Colleen
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The body hair loss is very individual. I didn't need to tweeze or shave for most of the summer, which was *wonderful*. Lost hair down under right around day 14 -- it was dramatic -- and once I'd shaved at that point (legs, under arms) I didn't need to shave more than once/month and just for good measure. I didn't lose arm hair til after 4th chemo, which is also when most of my eyebrows fell (briefly -- just used eyebrow pencil for about 2 weeks but brows came back quickly). Lost a few lashes but not all.
But wouldn't you know it, I had this one dumb hair on my big toe that wouldn't go away for anything!!!
I was TCx4@3, btw.
I'm back to normal now, except I need to shave one underarm more frequently than the other -- I think due to rads, it's still catching up.
Susan
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I haven't shaved since 2 weeks after my first treatment on September 24th...95 % of my hair "down there" is gone...did not lose the fine hair on my arms, I can see a few fine hairs on my legs and I'm a little over 2 weeks PFC. My brows are so thin, that I am penciling them right now...still have the eyelashes and hoping they will stay.
I was TCx6 every 3 weeks...and I used the Elasto-Gel caps....
Tori
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Thanks for the update, Tori! The hair on the legs is weird. Wondering when the hair "down there" is going...found out my DH was chatting with the guys about this at a party this weekend. I think that topic should be off-limits for everyone, but the sisters. LOL!!!
Your update was so great. But, how did your appt with the oncologist go? What did he/she think?
Congrats on finishing!
Annie
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Thanks for asking Annie!
All went great with my oncologist! He was pretty impressed that I had all the hair that I did! He asked if I wouldn't mind answering questions from others who might be interested in the caps, and I was happy to say "Yes!"! We'll see if I get some folks headed my way!
Headed to my first radiology appt this week. Rads will start first or second week in Feb...
Hope everyone is doing well and having very few SEs!
peace and prayers,
Tori
DE COLORES!
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Did some of you recommend Claritin for the bone aches from Eulasta? Is that the antihistamine Claritin? I usually take Zyrtec (for those unfamiliar -- Zyrtec is another over the counter antihistamine) for allergies but haven't noticed that it does much for the aches. Also, still looking for someone out there doing FECx6 every 3 weeks like me. Anyone out there?
Sounds like there's a lot of success out there -- best wishes to all -- we'll get through this!
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Ok, I'm 4 days past my first treatment and my hair is so gross. I tried just rinsing with cold water once and shampooing once with the Pure shampoo. My hair is so greasy I can't possibly go out in public like this. Did anyone wash their hair more than once a week and/or use regular shampoo? My hair has always been very oily and I've always used a shampoo made for oily hair. Maybe it's ok if I shampoo more with a shampoo for oily hair. Anyone else with this same issue?
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Hi Steph -
I have to say that I wash twice a week. I am on day #15 with TCH. My hair is greasy, but getting used to it....
And for all who read my post yesterday...I have answered my own question...day #15 on TCH and the hair "down south" is beginning to go "bye bye". Easy come, easy go!
Enjoy the day everyone!
Annie
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Steph42~ you can get through these first few weeks!!! I promise it gets better. I too have really oily hair...your hair will adjust...I would be cautious of using any shampoo that isn't sulfate and paraben free...some have used Aveda products or other natural ones. I have washed my hair on average every 4 days...seems to be ok....still counting...11 days PFC.
re: body hair loss - it does seem to be individual...I still haven't lost everything down there....or arm hair, shaved my legs Jan 5th and haven't needed to again (this was between Tx 3 and 4) not sure if it stops growing or falls out. And I too have hairs on my big toe I have had to continue to shave....I iced my toes..so...worked there too :-)0 -
Steph42: believe it or not, your hair will get better. It'll be flakey (from the chemo drying the scalp) and look kind of dandruffy, and it'll look oily at first but the drying effects of chemo will stop that also. I too have oily hair. By my second chemo, it began to look more manageable but that first week post-first chemo was something. Don't wash more than once/week, but you can rinse in cold water (I swim every day and kept that up throughout, so enjoyed having that daily cold water rinse.) Just be careful to gently comb out, and don't manipulate the roots. Your hair is really trying to hang on!
Hope you are feeling good!
Littlepenguin60: Yes, Claritin was recommended by my nurses for alleviating/preventing potential bone achiness following the Neulasta shot. I was already taking it due to hay fever season, and didn't have aches, so don't know if it was because of the Claritin or because I didn't get aches (I think it was probably the Claritin). The nurses weren't sure exactly why it worked, but they swear by it and said it is more effective than tylenol. It was specifically Claritin they recommended, not any of the other brands of hayfever/allergy meds.
Susan
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Hello everyone,
To Steph42: If you look back to about 2 ago, I too was horrified at how my hair looked after the 1st wash. I have short hair, so I couldn't put it in a pony tail, it was just awful. I also used the Sea Chi conditioner and it made my hair stringy and just awful. I may have used too much, but the second time I washed my hair I used a different conditioner--Alterna- Hemp Organics Spray Leave-In Conditioner. This worked much better for me, it is lighter, not as thick. I used a Conair Detangler wide tooth comb. I also used a hair dryer on cool setting, I used hair dryer when my hair was about half dry, not sopping wet, I kinda fluffed it with the cool air, then when done used soft brush only lightly--not pulling or going thoroughly through hair, kinda lightly and gently smoothing the hair. It wasn't my usual styling or look, but it was much better than the first time. I think the Sea Chi is more for detangling long, thick hair. Someone suggested using it mixed with water. I got the Alterna conditioner from Amazon.com for $12.00, I had no shipping charges-I ordered a few items thru them, but if you pay shipping of $6 or more, it pays to buy at a beauty supply type store, where it may be $18.00. It comes in a pretty bottle, a tall orange triangular looking bottle, with a spray cap. Good luck!
To LittlePenquin60: Yes, Claritin was reccommended. I used it once a day(24 Hr. kind) for 5 days, starting day 1 on Neulasta shot day. I had no pain whatsoever. I may have had no pain anyway, but why take the chance?
To Lmflynn: What did you use to ice your toes? Did you do your fingernails too?
Keep Positive, everyone!! We will be victorious, in control and with our hair!!!
Nancy
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Keep positive~ I bought three bags of the cheapest frozen peas...and put one on each foot and held the third in my hands for the hour of taxotere only. I had slight neuropathy and peeling fingernails after Tx#1...and found this suggestion on this site...so far so good. Also started Biotin and l-glutamine after #1.
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At the suggestion of another user, I used Cryopaks. These are little 1" x 2 1/2 inch gel packs that I found at K-Mart (I think they were in the camping section). They are made for lunch boxes and come with several in a line to wrap around lunchbox items. I was amazed at how long they lasted for such little things. I cut them into individuals and tucked them into my mittens (don't forget the thumb) and socks.
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Hi Julia1969: I used a very similar product, but it was made by Ziploc or somebody similar (not Ziploc but one of those types of plastic-y household manufacturers). Having a brain fart at the moment :-) I'll think of it. I froze them (briefly in dry ice) and put them in my socks. For my hands, I used orphan socks as mittens and put a few in there also.
One time I tried bona fide wine chiller wraps, and my hands and feet were so cold it was like freezerburn for a couple of days. Very uncomfortable and I was afraid I'd developed an outrageous case of neuropathy. Turns out I just got too cold. But now I have an excess of wine chiller wraps, ready for a summer wine party or something!
Susan
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Hi - anyone wonder why oncologists are skeptical of cold caps? Not sure why they would care. We are getting the chemo and the scalp is not an issue (per the studies). I don't get it. My husband just ran into an onco friend and he actually said he was skeptical and implied he would wait and see. For what? I find myself just trying to avoid the subject of hair with some people! It's as if hair loss is the ultimate proof that chemo is working...or something like that!
Truth be told, I thought about my hair all day. Chemo is next Monday.
I am sending positive vibes for hair and healing to you all. LOVE the ideas for the mittens, wine coolers, peas, etc!
Good night! Check out the happy face with hair!!!
Annie
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Anniemomofthree~
The first onc. I went to said they had tried them in the 80's and they did not work. It seemed to me that many thought they were the same caps as back then...
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Here is my thinking on the scalp mets issue -- cold caps have been used on hundreds, if not thousands of woman worldwide. If there was a real link between increased scalp mets and cold cap usage, there many cases of scalp mets in the countries where cold caps have been available for a long time. In the Age of the Internet, that information would be readily available.
Combine the anectdotal evidence of no linkage with the scientific evidence that failed to establish a relationship and I think we are going to be OK as far as scalps mets are concerned.
Colleen
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Hi everyone again,
Thanks to all who responded to my questions about body hair loss and ice packs for hands and feet.
As for doctors and their sceptcism. A few thoughts on that:
1. If they aren't getting paid for it they aren't into it, unless they are really dedicated and open to other ideas, which is rare!
2. They are afraid to reccommend anything that isn't FDA approved, in case of lawsuits.
3. How many drugs are recalled because they maim or kill people--AFTER BEING FDA APPROVED!!!!
Well we're the Pioneers here and we will prove to them that the cold caps work! Look how many women have used them in the U.S. already, and kept their hair. Women in Europe and elsewhere have been using them for years and no reports of scalp mets!!!!
Keep Positive and Good Night.
Nancy
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Anniemomofthree: About 20+ years ago there was a scalp cooling movement and a method of "cold caps" that were like shower caps with cubes of ice (I'm told by the nurses). They did not work well, and left a bad name on what Frank has developed with Penguin Cold Caps. Very few physicians and centers have seen PCCs; we are the first folks bringing it in in many cases.
However, those physicians who have had patients use PCCs are definitely waking up. Both of the current clinical studies were patient-driven: patients found out about the caps, used them, word spread to other patients, then those physicians began recommending them, and now the studies are underway.
We're pioneers, that's all :-)
This summer I had the great honor of meeting reknowned sarcoma surgeon Dr. Murray Brennan from Memorial Sloan Kettering at a mutual friend's party. I was 3 weeks PFC and described to him the PCCs etc. He and his partner remarked not just on my hair, but my overall well-being. Murray could not believe I was just a couple of weeks out of chemo.
He turned to his partner and said "How come all of the good ideas in medicine come from the patients?" That pretty much sums it up.
I'm also told that when PCCs were initially presented in the US (many years ago) to the medical community, the response was "Who cares? Hair grows back." It was an all-male committee, of course, and they didn't ask their wives, daughters, or patients. It's symptomatic of a system that fails to treat the whole patient. Someday we will look back and see how barbaric our medical system has been.
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Good Morning All,
To Anniemomofthree:
AMEN!!! Medicine, especially in New York is an "Old Boy" network. They are usually last to try something new. I know this for a fact, because many years ago my husband introduced CO2 laser surgery to the New York/New Jersey and Connecticut market--they were the last in country to try and accept this new, revolutionary method of surgery. It took my husband 2 years to get thru to them and that was after many others had tried!!!
Nancy
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One of my chemo nurses ( who has been doing this forever) said the same thing about the caps in the 80's and how they would just make patients dripping wet. She was intrigued about the Elasto gel caps when I was using them and although, no one saw my hair until my last chemo day, she was VERY impressed with my results (along with the other nurses).
Not once did my oncologist even bring up scalp mets when I told him that I wanted to try the caps. He said, "Go for it...it can't hurt"...so I did and I still have my hair after 6 T/C treatments.
peace and prayers,
Tori
DE COLORES!
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My onc was the same way he told me that I would just get a headache but I was welcome to try....be has since had four patience call me wanting details he had no concerns about scalp mets and he is highly respected he told me he was thinking they wouldn't work bc of the 80s as well but I made him a penguin believer!
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It is amazing that physicians in this realm cling to rumored "orthodoxy" that was prevalent 30 years ago.
Shame on them; this would not be tolerated in any other realm of scholarship. Physicians are supposed to be lifelong learners.. this is what we try to teach at our medical schools.. (it is a stated curricular objective, and i teach at one of them).
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