Cold Caps Users Past and Present, to Save Hair
Comments
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I just washed my hair and despite all the shedding I have been having, plus the somewhat un-nerving losses in the shower each time I wash my hair and several spots of frostbite in places from having the caps too cold (-38º C) the first time, I still have what looks like a full head of hair! It's amazing! To say I am thrilled would be an understatement.
My first T/C infusion was on May 8th and second on May 30th, so I am a full five weeks and two treatments into my chemo regimen. The cold caps seem to be working!
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My last chemo was on the 4th May this last week my hair has started to grow. I had large bald patch on top of head and around the ears and large patch on back. It is now covered in dark hair and my length has grown. All the moaning I did I will take back and be happy it is growing back so quickly.
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Yea Hortense!
and ali68-
I feel with everything we have gone through you are entitled to any and all moaning...
glad your hair is growing back so quickly!
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Hortense, ....and they will keep working. They really are amazing.
Ali, so glad it is growing back quickly!
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Hi everyone,
It is has been ages since I posted here but am happy to report that I am in recovery and my hair looks good. I do have fuzzy bangs where the caps did not touch and some interesting sideburns. I am coloring my hair and cutting it regularly and no ill effects. I am 11 months PFC. I finished taking herceptin this April (infusions were started and stopped twice due to complications) but overall things are going well. My eyebrows thinned considerably and wierdly only half grew back so now I have to pencil half of them in. Same for eyelashes, have barely grown back. I wonder what would have happened if I did not use cold caps- maybe my hair would not have grown back entirely either so I am very grateful I used the caps.
One question that maybe some one on this list knows. Frank told me not to use deodrant containing aluminum. Tom's and another brand does not work, at least for me. Are there any other deodrants that people have found effective that do not contain aluminum? Thanks and good luck to all.
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Serenity, I have tried so many and also have received suggestions on this site. Nothing will work like ones containing aluminum, but here are a few that I am using:
Adidas Cotton Tech+ (Pure Lightness--tried Pure Powder scent and it smells awful)
Menscience Advanced Deodorant
Naturally Fresh Deodorant Crystal
The first two I ordered from Amazon and they are expensive, the third is from Walmart. The problem is that aluminum is what keeps you dry.
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Try Old Spice (any fragrance , but the deodorant -not antiperspirant ).
It is a clear blue gel stick . My husband and I started using it by accident a couple years ago and we liked it so well we stayed with it.
We don't miss the aluminum containing antiperspirants at all and you can get it at any grocery or drug store.0 -
Have any one of you ladies had issues with mammograms after cancer?
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12 days after my mammogram, they want to take a few more pictures. Doc says it is so normal and the new 3D machine at MGH gives many false positives. They said they woud have called right away if they thought it was cancer. I am still freaked out! Advice?
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At my last mammogram in October (left side only after mastectomy) the doctor wanted a few more views after the initial test. Four more later she also wanted an ultrasound! Talk about freaked out. The ultrasound tech left the room for more than fifteen minutes - them comes back with the doctor. She took another look and decided it was just something ductal. I was so upset I asked my Oncologist to have it read again by another doctor. Everything was fine and it was also confirmed by an MRI in March. I think they are extra careful was us survivors. Just think positive thoughts.
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Thank you! They are telling me not to worry but I am I am so scared. I appreciate your post!!!
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hortense - Great news!!!! YAY!!!!
ali68 - YAY!!!!!!!!!!!!!!!!!!!!! So freakin' happy for you!!!!!!
serenitywisdom - thank you for the update! I have had problems with Tom's not working great for me - had to keep re-applying. Unfortunately deodorants do not stop sweating, so I ended up with wet armpits and then that led to thrush of my ARMPIT! (Still finishing up chemo - last one yesterday!) Eeeks! So, I HAD to go back to aluminum for now, to stop the wetness and get rid of the thrush. YUCK.
soccergirl - yes - and I've had bilat mastectomies! They thought I had residual cancer in one (not all cancer removed). However after repeat mammo's (TWELVE on that one poor little reconstructed breast), they couldn't visualize it well enough to see anything. Long story. I have follow up again in October. Ooh fun. Whatever, it either is something or it's not. Can't let cancer make me worry so much that it steals my today's. At least that's the mantra I keep telling myself.
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I have been using Nature's Gate and it works - even when I go running for an hour. After an hour of running and no stink - it works!!! I got it at Meijer. I know other stores have it - I have seen it.
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Hi everyone. I'm 7 days out of my first treatment with TCH,, 5 more to go. I'm using pcc and i'm wondering if any of you wore hats, hair products(natural) or used headbands, etc while not in treatment. My hair looks awful and I have no idea how i'm going to make it through! I don't even want to leave the house out looks sooooo bad but I also don't want to do anything to jeopardize it either! Please help!
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Hi all,
I love this site and all of you. Now I have a list of deodrants that don't cause cancer to try- Old Spice, , Natures Gate, Naturally Fresh Deodrant Crystal, Menscience Advanced deodrant, and Adidas Custom tech+ The support here is wonderful
Hbb- I know how hard it is to see your hair like this. I wore hats that were light, not tight so as not to pull on the delicate hair follicles. I also told myself a bad hair day was better than a no hair day. Take care, you will get thru this and then it will be much better. Hugs
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hbb - I understand how you feel. My hair was just awful at first. Flat and dirty and disgusting. I was so embarrassed, even at home. I wore a small kerchief when I went out. I also tried a sun hat a few times after checking that it wasn't pulling at my hair. Of course, I was also afraid to comb my hair properly for fear it would all come out so that compounded the problem, and I was told to wait three or four days between shampoos and not to use a brush, so everyday was a "bad hair" day.
I had read on this thead that the oiliness eventually goes away and hair gets dry from the chemo chemicals, and at five weeks past my first treatment I am finding that is true. I washed my hair two days ago and it still looks fine. Before I had chemo I had to wash every other day as I have naturally oily hair.
I also gave up trying to use a wide toothed comb after shampooing as I was losing too much hair with it, it didn't get my hair untangled and my hair ended up looking awful, instead of combed out nicely. With great care and trepidation I started using what I call a wet hair brush, as it is what I usually use after shampooing, and found it worked well for me. It's one of those vented plastic brushes with thickish bristles set far apart that have little rounded knobs on the end of each bristle. They are sometimes given free along with hair dryers.
Anyway, I find that if I use it on very wet hair that I carefully rinse to hang as straight as possible to minimize tangles, it works nicely. I start at the bottom and work my way up - I have long hair. I hold my hair against my head with my free hand to minimize pulling on the roots while I gently work the brush through sections. Its wide set bristles are great for delicately working out tangles hair by hair. Tangles discovered after shampooing seem to be caused by hairs that come out during the shampoo, no matter how gently I wash.
Try not to worry about hair you shed when you start shedding. I started about day 19 and it increased through day 30. I had hair falling down all my sweaters and found them all around the house. It seems to be slowing down now. Also, I am getting used to the shedding and am not so nervous about it. Looking into the mirror two days ago I realized that while I know I have lost a lot of hair, nobody else can tell.
Good luck!
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Hbb, I remember those bad hair days as well, but it really will get better as the chemo drys your hair out. I would be careful about wearing hats etc., as it is not just about tightness, more importantly it is about making sure they do not heat up your head.
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I'll have to try that Nature's Gate deodorant once my chemo is over and thrush risk is gone. Thanks for the tips!!!!
hbb - totally understand. I wear a bandana when I go out or a light hat. The day of washing and the day after, it looks good enough that no hat/bandana is needed, though. My hair, too, has become less oily as my treatments have progressed.
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Thanks everyone for the tips. I plan on going today to get a very light straw/paper hat. Also I froze some bandannas to wear while i'm outside because i'm sooooo paranoid!!!
I think part of the problem is that I cut my hair before chemo, shorter than I normally wear it, and it's curly / frizzy. Not a good combo!
I'm trying to think positive as I really don't hear many people saying the pccs were not successful. It's just so scary!!
Has anyone had the same treatment? 6 cycles,tch?? It's sooooo hard to look that far in advance,I wish I could quit after four since I'll have Herceptin anyway for a year and was 0/3 nodes, bilateral with clean margins.0 -
My follow up mammogram was fine. I think each time you go it provokes the earlier trauma. My onc says women after BC usually get called back. So ladies if it happens to you, be calm.
On another note, my hair is looking pretty. I am 8 months post chemo and hair looks full again. I have had 6 hair cuts and chopped of the damaged hair. I have colored 4 times with the real stuff. However, I only blow dry my bangs and have done many treatments ( twice a week) to moisturize my hair. My hair is a little above my shoulders and has a nice wave. My strategy for dealing with the ugly hair ater chemo was as follows: once hair stopped shedding( 5 weeks post Chemo} I used clip in extensions and would make two braids. I wore cute hats to hide awful roots and got many complaiments on my pigtails and hat wear. I didnot use heat because the chemo fried my hair. After each trim, the hair feels so much better! I still have not done a nice blow out yet and I think i will be more adventourous with styling once the new hair has caught up to old hair. All of the yucky hair is gone!
I plan to hike half dome at Yosemite National Park in July. It is an aggressive goal, but I deeply believe I can do it.
Good luck to everyone!
I am so happy to be healthy first and then second to have my hair.
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I confess that I have gingerly blown dry my hair a bit twice using the "cool" button. It made such a difference in how my hair looked and hasn't seemed to have hurt it any. Of course, I am only half way through my four treatment T/C regimen, so I hope I haven't screwed up big time. But, so far, so good.
I wouldn't do it regularly, but I needed a pick-me-up before a party and the second time I was downright cold trying to let my hair dry naturally on a chilly day and couldn't stand it any more.
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Hortense: you have not screwd up. We each modify protocol based on her our hair type and overall success with the caps. I did not blow dry but I highlighted my hair at the fourth month mark with no ill effects. At that point I had cut 5 inches of my hair. I did start with a few pieces the week before to see if hair could handle it.
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Yay! I have completed my 6 TCH and I am done with Cold Caps!! I don't want to give too much advice as I lost about 50% of my hair and I don't want anyone else to endure what I have. There aren't any bald spots but it is quite thin. However, I do have some thoughts.
I used the latest & greatest cold cap MACHINE which pumps cold ice water through a cap. It was much easier but I think I would have done much better if I had used the regular caps with freezer or dry ice. My thoughts to why: It did not seem as if the machine had either enough pressure or it did not pump frequently enough. The reason I say this is between pump actions the cap felt flat in some places (most pronounced at the top of my head which is also where I lost the most of my hair). The machine ran off of batteries and I had a battery issue during one of my treatments which was not rectified for at least 20 minutes. That may have also contributed to more shedding.
The biggest plus with the machine is that I did not have to worry about cap changes and keeping assistants there with me. I think that as the machine design improves, this will become a GREAT option. Geralyn has mentioned to me that they are already making improvements to the machine.
HBB, I did on occasion wear a kerchief and a satin bonnet at night . I also rode a motorcycle occasionly which required me to wear a helmet. I also had frequent hot flashes which caused me to sweat in my head. I don't know if any of these actions caused me to lose hair.
I am researching silica now (my iron levels are not low) to help me to turn the corner. Did anyone notice a pronounced difference after taking this?
Thanks all for your tips. It definitely helped.
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hbb - I just finished 4 cycles of TCH for a tiny HER2+ tumor (only 3 mm - tx is controversial). 6 was recommended (as it is the standard treatment), but I've seen lots of women with my size tumor only have 4 recommended, and the toxicities were getting to be too great for me, so I decided to stop at 4. Note - there is a TCH thread:
taxotere,carboplatin and herceptin
soccergirl - thanks for those details about PFC CC hair care! Was that highlighting 4 months post chemo was done?
tc9876 - HUGE congrats on being done with 6 TCH's!!!!!!!!! YEAH!!!!!!! And thank you for sharing the details of your experience and the cooling machine. You are paving the way for future gals who will be trying that route. Sure would be great if the machine gets improved - would be so much easier!
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Tc986- I noticed a couple things about Silica. I have always had weak nails and I pick at them which makes it hard for them to grow. I had my last chemo sept 22 2012. My oncologist recognizes me as post chemo Oct 22 2012. It takes 30 days to leave your system. I have and currently get herceptin.
I took many vitamins and supplements( which were okayed by onc) during chemo. I had to stop many of them when I began radiation. Silica was approved for both treatments.
My brows and eyelashes took the first big hit in Decemeber and the second in March. Right before the second eyelash shed cycle, I noticed that my nails were rock hard and long. I remember thinking OMG my nails have never looked better. Around this time, I became less diligent about taking the silica three times a day because I went back to work. Also, my hair was doing better and I was spending a fortune on prenatal vitamins, fish oil, etc.. However after the second shed cycle, my nails became really weak. I do think i am picking at them more because I am back to work. Long story short, I think the silica made a huge difference with my nails and I going to more diligent about this supplement. I also think it most likely made a difference with my hair but took so much other shit and still do so I can't isolate which pill worked best. Although Iron made a huge difference at the end of chemo for me.
I have also been reading about other women who had Herceptin and they have posedt that their hair and nail growth was affected. This could explain my weak nails.
Dancetrance: I highlighted 4 months post chemo. I did the whole thing in January and put more highlights in every six weeks.
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@tc9876-I'm glad you posted of your experience with the machine.I was thinking about you and wondered how you were doing. Congrats for being done with chemo! You are a true pioneer and an inspiration for those that will follow in your footsteps
Now that your done with chemo your hair should start filling in where it had shed. By the end of Summer it probably wont even be noticeble that you had any hair loss. The MACHINE vs. the Penguin cap-which is better? Generally the recommeded temperature of the cap use is between -28.0°to -31.0° Celsius. We all learned in school that water freezes to ice at a temperature of 0.0° Celsius. I wonder how this 'machine' can be as effective if it only reaches that low...The advantage of using the machine is of not having to change caps every 30 minutes. The disadvantage (and it's a big one) is there is no back up in case of failure of the machine. What is one to do in such a situation?
The reasoning of not wearing hats throughout cold cap treatment has never been clarified. I think the reasoning is twofold-not to heat your scalp and not to pull on the fragile hair follicles.
@soccergirl-Us BC survivors get extra attention. Not that we want it
I can't imagine having a mammo done on my implanted breast, just thinking about it hurts... There is a technology called thermography some have used. It looks promising. Ultrasound is another screening method that doesn't dose us with radiation. 0 -
Makingway: I have my natural breast, could I recommend thermography? I appreciate all the info!
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Thermography isn't widely recognized by the medical 'industry'. It's considered more of an integrative procedure than the typical conventional screenings. Therefore, I don't think insurance will cover the cost. I think it costs @ $250.00-$300.00. You can do a search on bc.org and find more info. about it. I don't know much about it, other than it seemed safer and painfree
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hbb, I had 6 cycles TCH and kept all of my hair.
Hortense, during treatment, I used the cool setting on my hair dryer with no ill effects.
tc9876, I'm sorry you didn't get better results, I was sure hoping that the new machine would be less trouble with the same outcome. I think it just wasn't cold enough, or it could have been your 20 minute battery issue. I'm glad you're done, and that you still kept 50 percent!
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Dancetrance thanks for the link,I have been so curious about four rounds vs six as my onc "accidentally" mentioned four rounds, got my heart set on it then changed it to six and my heart sank. I'm only a week out of the first so it's hard to visualize five more.
Laura5, congrats on being done! Any tips on how to get through the se's?0
