Cold Caps Users Past and Present, to Save Hair
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Good morning penguinista and CONGRATULATIONS on being done Zlota!!!
I wanted to let you all know that later today I will be going to my Onc's office to tape another news segment about cold caps. This times it's a local news program and I don't know much about the story - I'm just going to show up later on this afternoon and help get the word out!
I will let you know how it goes when I get back.
Have a good day everyone!
Ditah
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Drim~ Great news! You have done so much to get the word out!
Posting the final two pictures... Day 98 (5 weeks PFC) and Day 100!! In Vegas with a good friend. I dyed my hair (with semi-permanent) and had a SLIGHT trim done on Day 98... and my hairdresser was wonderful... we used cold water, wide toothed comb, my shampoo... I'm still so very grateful... but can't wait to be able to wash my hair in warm water and use my old shampoo and get a decent haircut.. but it is all there!!!! Hope everyone is doing well!
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Hi everyone,
Congrats to Zlota on finishing chemo!! Hooray for Lmflynn for being able to color and cut your hair!
I use Pure Shampoo and Alterna Hemp leave -in Conditioner. Seem to work okay.
I had chemo on Friday and had to wait until today, Wed. for Neulasta shot. Center was closed Sat/Sun and Mon for holiday. I skipped yesterday, Tues. because I had an appointment with my surgeon for a checkup today, Wed. and since Hospital center and Dr.'s office are18 blocks apart, I thought I would do both on same day and save a trip to the city. Well 5 days may be too long, I got huge black and blue marks on my arm today and a lot of nose bleeds last 2 days. I had them switch my chemo from Fridays to Wed. so I can get my Neulasta shot the next day, instead of waiting over weekend until Mondays.
Great news Drim about news story. What channel?
Keep Positive Ladies, we're making a difference!
Nancy
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Lmflynn - you look absolutely fabulously radiant. I am so happy for you. Thank you for sharing your journey. Enjoy Vegas!!
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Lmflynn...You look great! I hope to look as good when I am done with chemo. Congrats on being done and having your hair! A job well done and certainly worthy of your girlfriend time in Vegas!!!
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Lmflynn, You look terrific. I'm further post chemo than you and am going for a very mild color job next week. I think it will lift my spirits considerably.
I did three Neulasta shots after my first chemo, but had to up it to five for the rest because of low counts. You know you can give yourself the shots. Much easier than another trip into some office. You inject into your tummy. It really doesn't hurt much (just the thought is gross, I know) but it is definitely worth it on a hassle level. Your nurses can teach you next time.
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Lmflynn: fantastic! Yes, there's NOTHING like that first warm-water hair wash. That was my birthday present this year.
Shampoo: fwiw, I was able to use the same shampoo and conditioner I always use: Trader Joe's Nourish Spa essence. Chemical-free, smells great, inexpensive, works great with my hair (and I'm fussy). Makes my hair soft, and I absolutely had/have to use conditioner for detangling cuz I have Big Hair. I washed just once/week, gently, and had no issues other than the standard I've-only-washed-my-hair-once-this-week-and-a-week's-worth-of-hair-came-out.
Drim: you are a rockstar goddess and I love you! There have been quite a few TV stories on the local news, I think spurred by the PCC and digicap clinical trial(s) at UCSF. One of my friends called me roaring mad because one story said it's subject was the first user in the bay area (he'd been by my side throughout). I assured him they probably meant she was the first user in the trial...but you know what's nice? I love how large my Circle of Care became/is. As I battled cancer, and battled to keep my hair with this method nobody had heard of here, more and more people became involved. I think every day at work or in my neighborhood, people ask if it's okay to give my name and number to a woman who is newly diagnosed.
I'm always so sad, of course, to hear of the new diagnosis, but so very glad to be able to lend some positive energy, encouragement, and choice to women who travel this journey.
Love to y'all penguinistas!
Susan
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Everyone is searching for the right temps for the caps, I thought I would share what I have found. Hypothermia starts when skin temps reach 68F, it sounds warm but body temp is 98.6, twenty degrees warmer. Cooling the scalp to a temperature of +17 oC to achieve a subcutaneous temperature of +20 0C (68 oF) constricts the blood supply and slowes the metabolism of the hair follicles.
We are tracking temps with a new thermometer that records under cap temp. during treatment, we believe the data may help establish better temp. protocols for cold cap use.
Cap temps. determine the thermal capacity of the cap. If the cap is applied at -30F it has more thermal capacity than -10F and will induce a deep hypothermic state for a longer period of time. Your body will react, it will restrict the flow of blood to the surface of the skin while flowing faster beneath the skin to keep the subcutaneous layers warm and healthy that is what enables your head to actually thaw the caps while you are wearing them. The layers that contain the hair follicle are not that far below the skin and are easily reached by cold. We are adding to our site, more faq's and info pages, we are always looking for suggestions about what works and what does not, please leave a comment or a question.
Mike
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Hi Ladies (and gentlemen): Just wanted to update on coloring my hair, 2 mo post final chemo. I used Clairol Loving Care (ammonia free). My hairdresser carefully applied it w/ foils so it didn't touch the scalp (not sure if this is necessary, but it seemed wise). It worked well; no problems! It made my hair softer and shinier, with pretty good grey coverage. And all one color again! Since I'm still only washing once/week, I'm hoping it will last a while.
The bad news? My eyebrows are falling out and a few eyelashes too. I had hoped to avoid that, but oh well. I still have about half the eyebrow hairs and a good brow pencil....My underarm hair is starting to come back (oh, joy), but no significant leg hair yet.
Good luck to everyone still going thru chemo. I am going in for a NS mastectomy next week, so not quite done yet!
Lucky
PS: I DID use the conditioner supplied with Loving Care on the ends, think that helped with the softness. And, upon close inspection, I do have some new eyebrow hairs growing in.
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Hi Lucky60! Congrats on the new hair color. Fantastic! The colormark is a great product, but knowing that your full head is colored must feel great. Send pics if you know how to! I have to admit that i do not know how to do that!
Did you have the oppty to get a latisse (or generic) for your brows and lashes? i have one waiting for me after my chemo. I had talked to my onco and he said I could do it whenever, but waiting may be best. Not sure...I still have the majority, so not a worry now. But I would be a bit surprised (like you) to have them all fall out post chemo!
I stopped into my hair stylists yesterday to show her my hair. She could not believe how much hair I had. What she really wanted to do was wash it. LOL. Then I showed her the nape and she agreed it was gone. She offered to cut it up a bit because I have layers and the long layers in the back are so thin it looks a bit weird. So, she cut about 1/2 - 3/4 inch off the back. She also cut the immediate bangs, nothing extra. Oh, and she went on about ALL MY NEW GRAY. Yes, that is all new growth everywhere else. She was amazed. It felt good. My hair looks better today.
Love to all the penguinistas out there...the daily love, support, successes, visits from other pioneers, stories about getting the word out, MEAN SO MUCH!!!
Annie
Mike - thanks for the info on the temps. I like the site! So, are you a rep in that area?
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Lucky 60, My eyebrows thinned around the time of my last chemo and now the lashes are falling out 1 3/4 months post chemo. For eyebrows I found the Bare Escentuals brow kit. It has a powder to color in your brow line, but also a gel that keeps them on your face. I have blonde hair (yeah hair!) and have found other brows look drawn on and stupid. We have one of the stores in our mall, so getting instructions there how to use the stuff really helped. I've been using all their makeup because it is the best for your skin. (My derm recommended it).
For eyelashes, mine are missing chunks of lashes. That makes mascara look pretty stupid. I am using more eyeliner to disguise the missing lashes.
The thing I've noticed is that the hair that fell out last is coming back first. Fine face hairs and arms are coming back, but not so much legs. Hope that means the lashes and brows will be back soon.
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Julia - thanks for the update! It is nice to hear that there may be some predictability for us all...I feel like mine lashes will go because I have noticed some gaps too. I just take a dark eyeshadow (brown) and wet it with water and dap the gap. Seems to work. But soon i may be trying to dap the entire lash...will not be pretty!!!
How do others deal with missing eyelashes?
Annie
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lmflynn - you look so beautiful!! You must be beyond thrilled with the results you achieved. I love the color you chose.
Nancy - the TV station that interviewed me was WCBS (2).Btw - that freezer is packed with caps. WOW. I'm glad people are using it.
Susan - Love you too! Thanks for the support! I think the interview went fairly well but if you speak nearly as well as you write I would love to see you doing an interview on TV. You would do an amazing job
mikeomg - thanks for the explanation. I love to hear the science behind this stuff.
For everyone talking about eyebrows/eyelashes - I definitely lost them both after chemo. The eyebrows went first but started growing back immediately so I used a pencil to fill it in while it was growing. I've had a lot more trouble with eyelashes. They grew as soon as they fell out and it was looking nice and thick but lengthwise it was terrible. So I bought some lash thing (forget the name now). I have no idea if its working or not. My lashes are longer now to the point where I can wear mascara and not look stupid but I think I'm going to have to try that generic lattise.
Have a good one sister!
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Drim - can you send us a link to the site? You are such a great ambassador...
Susan - another great ambassador. i was just at the bus stop today and had another conversation about a newly diagnosed young mom, just had the BMX and is devastated about the upcoming loss of her long, black curly hair. Gave my name/number to the friend...but sometimes they just don't call. Almost like we need cards!!!
Lmflynn - I have gone back to your pics so often in these last few days. You look amazing. Wouldn't it be great to have a photo montage of all the beautiful penguinista pioneers???
Happy Thursday everyone!!!
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Hi all~ First of all...thank you all so so much for the positive feedback...it does my psyche good!! You are way too kind...it feels good to be 6 weeks PFC.
Thinking my eyebrows and lashes may go....they have thinned, more the brows than lashes ...am using Latisse so hoping they grow back quickly.... I have a theory..and may be dumb...but most mascara and eyeshadow contain aluminum powder...I did not wear mascara throughout my treatment...and only twice since ending. Wonder if that increases your chance of losing them...like the deodorant? Then again I'm not past the 8 week mark which is when many seem to lose them...would love to understand why it takes so long after chemo for this to happen.
Drim~ Great job! I am positive you did a fantastic job! Let us know when it airs...hopefully we'll be able to see it on-line!!0 -
Hi, I was just wondering if any one has used the caps with AC followed by T Regimen given every 2 weeks. I start this March 9, and do not know if the PPCC are an option. Thanks for your input.
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H leeann56 Yes cold cap will work, I am working with Tammy in north Ga., she has had 4 AC and her first T was today. Her Doc gave her a choice, she opted for low dose longer term paclitaxol. In doses over 175mg/m3 cold caps have had poor results, lower doses do a lot less harm to the hair. She is receiving 75 mg/m3 at those levels with cold cap treatments the nurse told her, she will see hair start to regrow before the end of the treatments. That was a shock but the nurses can not deny the results. Tammy is using the Advance gel caps, she lost some hair on her neck and along the folds of the PCC, she switched to the Gel cap after one AC treatment and has not lost hair in any new spots.
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I start taxotere and cytoxan X4 next Wednesday (boo) but am trying to finalize my "hair saving extravaganza" supplies. My med onc's office has freezers and caps on site so I don't have to do the coolers/dry ice run (yes, I realize how lucky I am compared to the hoops some of you gals have jumped through!!!! You gals dry ice gals are incredible!!) Can you tell me what I am missing from my list of things I already have?
Electric blanket, cute hats (for dirty hair days/and root days!), Colormark Pro (for gray roots), mole skin pads, pantyliners, organic paraben free/sulfate free shampoo/conditioner and styling gel (not to touch scalp/roots!!!), hair scrunchies (I thought they went out in the 90's...who knew you could still buy them? My friends will never let me live this down once they see me in one....ha ha!), soft/elastic and cloth headbands (to keep long hair back off face when it looks stragly), small pincher type light weight hair clips (to use softly if I need to pull the front pieces back off face), satin sleep cap (I have long hair), satin pillow case (what's a satin cap without the matching pillowcase?), water bottle hair mister (to wet hair down lightly on non wash days), soft curlers (to add a little wave on the lifeless hair days - they are super lightweight - made of fabric), Rx for Lattisse (for brows and lashes), organic mascara (if I can even wear it on occasions??? anyone know?).
Another question...can you wear nail polish during chemo? Just thought of this because of the comments about nail issues with taxotere.....anyone know? Any issues with nail polish vs no nail polish and nail loss (due to chemicals in polish)?
I do want to get my own thermometer as I a want to make sure we can check the temps. I went to home depot today...they have weather thermometers that have a main unit and another unit that you place outside. They are some type of wireles weather thermometers. Is this what you used? Tell me more specifically about what type of thermometer to get and where I can can get one.
What else do I need?
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Anniemomofthree: I didn't notice any missing lashes until they started growing back. Now they're as full as ever (I've always had nice lashes, one of my nice features). It didn't take long for brows to return and lashes to recover. But of COURSE, I had to shave my legs before any of that happened. Sheesh! You'd think we could get a break, right? :-) I used pencil for brows for a couple of weeks; I don't use/need mascara, but the theory about aluminum is quite interesting and worth following.
mdg: I had no nail issues of note. I think they're somewhat thinner/break a little easier than before? but no noticeable discoloration. (Certainly not the horror stories of folks I've heard on harsh chemos who lost their nails altogether!) My nurses said that on TCx4, you needn't worry. Icing the fingers and toes (primarily for neuropathy) will also assist with the nails. For thermometer, I inherited one (from a previous user, Joansf on this list)(hi Joan!) that I think was purchased at Sears: a hand-held gun-style laser thermo, not the outdoor weather station type such as you describe. Ours read both Fahrenheit and Celsius, with a digital readout. In turn, I passed it on to another penguinista, who passed it on....I'd add: make sure you get a big water bottle, so that you can keep hydrated. Hydration and flushing your system is one of your best friends in detoxing the chemo -- helps your liver and also helps your hair, skin, everything. Do you have a system for icing your toes/fingers?
Susan
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Northern Tool stores have a cute little no touch for $39.99 it reads down to -68F and is a little bigger than a carlock remote. Micro Temp MT 250
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Was the AC at a lower dose or just the T? How much longer did she go? Getting really nervous!
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lmflynn - you look great!
I'm 10 weeks out of final chemo and getting my hair cut today. I'm so nervous! Going to a new place that only uses Aveda products. They are going to think I'm crazy when I say, just wet my hair, don't wash it. I don't want to risk anything, but my hair really needs a cut. Wish I could color it now, but I'm too chicken. I'm going to wait.
Are Aveda products ok? Anyone used them for color at a salon?
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Hi Michcon - good luck with your cut today! I do use Aveda...but have not during cold caps. You may want to stop and pick up a natural color and put it in your purse as a backup! Or not! You are 10 weeks out and there are so many that colored at that time. Your hair looks spectacular in your avatar. Is this post chemo? Keep us posted. Can't wait to see it!
Yeah, you are done with chemo! Celebrate!!!!!!
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mdg - I got my infrared thermometer at Sears, it was a Craftsmen and worked very well. Also, I wore clear nail polish during chemo and it seemed to help. One day I forgot and I felt like my nails were more brittle after that. Another poster on here recommends dark polish. I don't think it can hurt to have polish on.0
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Michon~ Thanks!! I totally know how you feel...I was so nervous....my hairdresser kind of thought I was nuts and I've been going to her for years...but at the end she said thanks for trusting me with your hair....with the color ....I truly think as long as ammonia and peroxide free no matter what product you'll be good. My hairdresser did use papers (foils) to apply...that way it stays off the roots...instead of putting it all over. Let us know how it goes!!
Also, for those of you further along...when (how long) until you feel comfortable treating your hair like "normal"... I'm still shedding but much less...I actually think it's breaking off more than coming out...hair on my legs and underarms is just starting back...but it is super fine...like baby hair. (TMI - sorry)
Mdg~ I also got my thermometer at Sears..and it worked great...about $70... good test is to get a glass of ice water and it should read 0C or 32F..within a degree or two...you'll get the idea of how far way it should be from the cap.
On nails, I wore OPI nail strengthener through out Tx and on chemo days used black nail polish..got info on these boards that it helps...wore toenail polish throughout and even had two pedicures..no nail issues thankfully!...except weaker and seemed more brittle. I did ice my toes and fingers after my first Tx with frozen peas.0 -
Nailpolish - Got off this thread -Sally Hansens Hard as Nails is good and dark nail polish is good. If you are only having 4 treatments it won't effect the nails but more than that it may. Good Luck!
gmp300/Geralyn
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The AC was standard dose, Cold Cap has a proved to be effective at those levels. We have extended the recommended treatment time after infusion to reduce the cumulative effect of the lower dose as the body metabolizes the drugs. The Paclitaxel will be administered 12 treatments every seven days @ 75mg/m3. During clinical trials Cold Cap was effective 62% with Paclitaxel @175mg/m3, however, lower doses and extended cold cap treatment times are yielding much better results.
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Good Day All,
To Mdg: I would like to give you a few pointers, that I have found useful and for everyone else too. I have purchased an item that is great for covering your ears during the cold caps, it is called "Ear Pops". They are earmuffs without a band-individual little cups that go over each ear. They work great, don't fall off and are real cute and can be used for regular ear muffs if you choose to. I got them on line for $7.95 plus shipping for a total of $9.00. They shipped in 2 days. Google "Ear Pops".
I also found the mole skin a pain in the neck and use a mini sanitary pad or Pantyliner from CVS with the ends cut off for my forehead-it sticks on and stays there the whole time. I also found the chamois cloth a pain and use a gauze that they have at the hospital/infusion center. It sticks to itself and is tan in color. They give it to you if you ask. I take a whole piece and wrap it around my neck and double it under the chin. It keeps your neck warm, doesn't slip, or fall or move and keeps your chin protected from the cold chin straps.
For eyebrows and lashes Goggle "Generic Latisse" You will find a few places that sell the generic version of Latisse for about $38 to $40 plus shipping(from India). Mine came to $56.95, half the price of Latisse and the same thing. It takes a few weeks to come, about 3 to 4 weeks. Don't worry, the eyebrows and lashes seem to be affected last, so you have time to get it and start using it. Mine came with a little brush. I use one drop for both lashes and eyebrows each night before bedtime. In the AM I apply liner as usual, but not mascara, need to find a mascara that has no harsh chemicals.
Lastly, I would recommend the thermometer that mtri111 recommended to me. It is from Amazon.com. Search for "Infared Thermometers" on their site. It is the Mastercool Infrared Thermometer with Laser. Product# 52224-A-SP. It work great and is very easy to use and it was the cheapest one of its kind-I checked Sears/Target/ various hardware stores/Home Depot/etc.
Good luck to you and don't worry, everything will be alright. Chemo will be tolerable and you'll hardly be aware of it because you will be concentrating on the cold caps all day!!
Keep Positive!!!
Nancy
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Nancy,
I have already switched to this mascara: http://www.physiciansformula.com/en-us/productdetail/organic-wear-product/01062.html
It is organic, paraben free and free of harsh chemicals. It is OK. It comes off pretty easy if you are still in the crying phase of BC (one daily cry and it seems to be gone) which actually is probably a good thing as it is not difficult to remove so lashes won't be tugged on. You can find it at CVS, Walgreens, Walmart, Meijer, etc...they do also offer some other organic makeup products. I use the tinted moisturizer, liquid make up, blush/bronzer, eyeliner and powder. I could not find any concealer or eye shadow that was organic by them in my stores so I am still searching for some solutions on those. For lips - I like Burts Bee's tinted lip balms also available at most chain stores that I listed. Just some FYI's on make up.
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Hi,
I had 4 TC @ 3 and didn't ice my nails (fingers or toes) -- but I did have them polished. They held up fine.
I got my infra red thermeter at Sears. And now that I don't need it for checking dry ice, it is a blast to use while cooking! Alton Brown move over!
Colleen
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