Cold Caps Users Past and Present, to Save Hair
Comments
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Lucky- I used frozen peas twice on my feet, never on my hand. I didn't have any problems. And I had 4 TC.
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Hi,
Re coloring hair at 4.5 months PFC - I went to a professional and he used a product that did not contain much ammonia per my request. Worked fine to get rid of the grey. I am not sure I would try highlights at this point as that contains stronger chemical to lighten.
Re icing nails. I used frozen peas sporadically on my finger nails and toe nails. I wonder if I had used ice packs consistently on bottoms of my feet if that would have prevented neuropathy which I still have on bottoms of feet. My finger nails are still very brittle and in retrospect wish I had used the ice packs on my fingers consistenly, maybe that would have helped. I imagine everyone is different re developing neuropathy from chemo and having nails break off.
My eyebrows and eyelashes seem very slow to grow in. Has anyone used Latisse with good results??
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serenity, I have been using Latisse on my eyebrows for about 6 weeks (eyelashes ok for now). I lost about half of my eyebrows, then starting using it. I don't feel like they are growing in very quickly, but I also don't think I lost anymore once I started using it. There is a thread on this website~Help Me Get Through Chemo, topic: Using Latisse During Chemo.
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Lucky, for me the fingers in ice are the WORST but my toes didn't bother me at all -- maybe because my fingers hurt so much I couldn't focus on anything else.
To endure it, I set the timer on my Iphone and start out 5 minutes, 30 seconds out. When that gets to be too much, I go to 3 minutes in, 45 seconds out. So far, I have gotten through the ten minutes before, hour of and ten minutes after taxotere with that schedule.
I also keep ice in my mouth as much as possible and have not had a mouth sore yet (completed two of four).
There seems to be an endless amount of stuff to learn about how to do chemo. Who would have thought to ice fingers, toes and mouth? I may write "Chemo for Dummies" when this is all done.
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LOL! I love it, Chemo for Dummies - you should definitely do that!
Thanks everyone - I appreciate your wisdom on the finger/toe chilling question.
To those of you with Latisse questions - I'm using it for brows and lashes - I've only finished 2 of 4 of T/C plus Herceptin - so it's too soon to tell - but so far so good - my lashes look great right now:)
Lucky,
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Many of us lost lashes 7 weeks post chemo. I used latisse and lost them 7 weeks PFC. I only thinned a lot on brows. Latisse really helped lashs grow back fast...thick too. My lashes are falling out again but at least this time they are not going comepletly at once. I finished chemo the first week of May. I hoped I would not lose lashes again. I hope they grow fast again.
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I am using PCC and I am new to this discussion board.
I am going in for my 5th chemotherapy (Herceptin/Carboplatin/Taxotere) on December 22nd.
After my 6th treatment I will be receiving Herceptin only for 6 more months along with radiation.
I still have hair for which I am thankful however I am starting to lose more hair lately. I am using California Baby shampoo from Whole Foods. Is it true that some people continue losing hair after they go off the Taxotere and Carboplatin?
What is the best shampoo to use? I have heard so many different things.
Is it safe for me to trim my hair at this time?
It sounds like people are recommending doing the caps in between the chemotherapy. Is it more important to use the cold caps right after the chemo when it is at it's strongest?0 -
Lucky: the main reason for icing fingers/toes is to prevent neuropathy, which can be painful and long-lasting (sometimes permanent) with TC. Icing also helps preserve the quality of the nails, which take quite a hit. They get dry and brittle just as the hair does, and icing for fingers/toes is exactly the same principle as cold caps.
I used little mini-ice packs (lunchbox style) and stuck them in my socks and mittens during the infusion. I also tried wine cooler sleeves once but they were too cold for me.
I had some mild neuropathy with treatment #2 despite icing. However, my nurses told us at our orientation to begin using acupuncture even before we had our treatments,to get ahead of the neuropathy. I'd never tried it, but did, and found it remarkably effective at immediately relieving any/all SEs including energy, mood, and emotional issues. There is acupuncture treatment built in to my cancer center, but it is worth seeking if your center does not yet offer it. (My acupuncturist was one of my biggest fans, because she'd toiled for over 15 years to have alternative treatment accepted by the medical community.)
My nurses told me that with TCx4@3 I wouldn't lose my nails but I was likely to experience some degree of neuropathy. My nails were dry and "chippy" until recently (1.5 years post-treatment) but they are now, finally, in good shape. I just had them shellacked for the first time and they've been in great shape for a full 2 weeks despite lots of travel etc.
Cheers,
Susan
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Christine: I did TCX4 plus Herceptin and finished chemo on 9/22/11. I shed the most hair after the 4th treatment but once I started taking Iron, my shedding stopped! I stopped shedding after 5 weeks PCC chemo. I am washing in warm water and my hair is fine. I take a lot of vitamins and eat a lot of protein. My hair is growing like crazy now!
I think you will be fine if you trim some hair off, don't do to much.
Best Shampoos: I think hair type plays a huge part. Chemo is so drying that anything with moisture, sulfate and paraben free will work. I lost more hair to breakage from dryness.
Once I stopped shedding, I ditched the protocol and now follow the universal protocol to treat dry damaged hair.
In the beginning I used the caps in between but could not look at caps after second treatment. I kept 90& of my hair. For me the doing the caps in between was not a huge factor.
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Hello ladies!! Sorry I have been MIA lately:-) fiished my rads on 11/14 and decided to take some tiem off! I was emotionally, physically & mentally exhausted and my body was telling me to STOP!! so i took 4 weeks of short term disability and feel so much better now.
Okay, updates now:-) I am 3 months PFC YAAAYY!! I used the cold caps. As some of you may remember, I had a BAD hair reaction to shampoo after my first wash (which was abt 2 weeks after my 1st TC treatment) that made me chop off a lump some of my ahir at the back, therefore all through my chemo and radiation i had very short hair at the back and long infront, so my style was pulling my front hair all the way back into a ponytail. I looked normal and okay esp to people that dont knwo me. Noone knew that i was going through treatment and even the ones that knew commented that i did not look like i had chemo:-) my lashes and brows thinned alot!! and that was so depressing for me coz i've always had thick long lashes & brows! BUT they came back like crazy:-) i can now say that my lashes are back to their thick way and my lashes are back full and long!! As for my hair, i did not loose any at all!! I decided to cut all the long, dead hair and i now have a short crop that looks absolutely great!!! my ahir is growing so much and t looks so healthy and thick.. just noticed that its curlier than i can remember LOL.. but not complaining!! I cam back to work on monday and i have been getting positive comments from my colleagues saying i look younger with the short hair etc... So my story is that, I am soooo glad i used the caps, no regrets at all!!! I also would like to tell the new users that hang in there, its all worth it! there is light at the end of the tunnel!!
Have a blessed day!
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Thank you Soccergirl. Very reassuring.
I have a couple of spots that have a type of build up on my scalp. I read somewhere that people continue to lose hair after the treatment.
Regarding shampoo: Somebody told me about a shampoo called John Masters Organic. Has anyone tried this one?
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I added just 2 drops of apple vinegar to my shampoo (as Frank advised) dilute with cold water and it worked for me, but my scalp had big crusts. Please keep in mind that I was doing AC and Taxol and lost 85% of my hair during the process. Good luck!
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I'm on day 15 of my first round of TC. I still have my hair. LOL! I half thought I'd be the exception, and most would fall out. I've noticed increased shedding. (body hair also starting to go) Washing only twice a week is challenging. My oily scalp has decreased a little bit, but by day 3, I'm desperate for a wash.
It's exciting to know that I still have my hair. I knew the aggravation would be worth it, but I especially appreciate it now. Dealing with SE's is enough. I'm grateful I don't also have to deal with the emotionality of losing my hair.
It's because of this group that I had the courage to "go for it" and take this action to keep my hair. Thank you!
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LeesaAnn, I remember at first thinking I might be the exception too
It is so true, much easier to deal with all of the other SE's with hair! 0 -
Leesa Ann...you will have hair! It seems like it won't happen, but you will. I hope you are feeling OK. Just realize too that as you start to lose body hair elsewhere, you won't lose your hair on your head at the same rate...it may shed a little but just keep comparing your head to the other areas of your body that are losing hair.
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I have a hair related question for those of you who wore the caps and kept your hair and then went on tamoxifen. I have been reading that some people lose some hair on tami. Has anyone experienced this? If so, how much do you shed?
I am four months post TC and the shedding is finally slowing. I am starting to use a blow dryer on the cool setting and it is so wonderful to dry my long thick hair so quickly again. (yes, thick thanks to PCC!). it is still dry so I only wash it once a week but no flaking. Still using Bert's bees shampoo and having good luck with it.
Hang in there ladies!0 -
Holy Cow! Shedding big time now. Crap. Day 20, second tx of TCx4 tomorrow. If shedding continues at this rate, I will not have much left in the end. just damn.
Should I expect the rate of shedding to stay the same all the way through this?
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I started tmmi in june. My hair took a while to stop shedding post chemo but it feels great now. I don't think it is thinner due to tammy at all. I started using moroccon argon oil on it and it does not feel.as dry as it did. It feels healthy now.
I shed a lot through chemo and PFC and still have what looks like normal hair. I also thought I would not have any left at the rate I was shedding...but I did. It will be ok......0 -
Have to say I have started using the argon oil also...makes my hair so smooth and shiny.
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Day 19 post round 1 TCH. Using caps. Still have all my hair, but scalp really sore. Does this mean it's coming out soon?
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My scalp was sore too at times during chemo. It kind of felt like I had my hair pulled back in a very tight ponytail. You know how your scalp hurts when your hair is pulled back tight? Is that how it feels? I think a lot of ladies had a sore scalp during chemo. I know many have posted that on this thread.
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Ditto on the sore scalp. Try to keep the faith that the caps will work...
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Ditto on sore scalp here too.
LeesaAnn: Don't fear, I think you'll still keep your hair. It may thin a bit (lot) but in the end you probably won't need a scarf or wig. Keep doing all the stuff to stimulate growth. COLD washes and rinses and if possible, caps in between.
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Does anyone know if PCCs have been used successfully with other cancers? A friend of a friend has ovarian cancer and will have chemo. I don't know what regimen she will be on but I will share with her about the PCCs and am hoping that there is the possibility for her to save her hair. Has anyone heard of anyone having success with other drug regimens?
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momof4girls, There is a list of chemo drugs that the caps work with on the PCC website. If her regimen is not on there, I would just ask Frank.
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thank you Laura5. I will let her know.
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Hi Ladies, Like Snoopy I finished rads on 11/14, and just had my 3 month followup at UCSF for the hair study. I now am Dr free till March, exciting and frightening at the the same time. Some of you may remember I did the DigniCaps study compiled of 20 woman. the results are being compiled to present to the FDA in the hopes that the machine will be approved so more women will do chemo and keep their hair. I am proud of being a part of this as are many of you and you're successes with PCC. I did loose quite a bit of hair, probably 75%, mostly due to have so much that first time the cold just had a harder time getting to the scalp. Then when I began to shed the tangles made it difficult to stop the Knots which then led to pulling and well more loss. Do I regret it? not even a little. Was it successful in my opinion? YES. I have hair, and it GREW in so fast that at 2 months PFC I was able to go topless. Which for many of you, you never had to experience this but I am very lucky. Most of my hair loss was on the top, kept my bangs and back. One it began to grow it started to look normal. YEAH!
So here are my thoughts, Frank is a pioneer and savior of many, but the DigniCap is also promising since it is a lot easier to use. Do they have kinks to work out? yes several, but that's why we do studies. Also some interesting stuff. I stopped shedding 6 weeks PFC. I also began washing with warm water, and now with hot like normal. I also wash every 3 days, and colored my hair at 3 months. It felt so good! So i think because i lost so much in the beginning what held on really held on.
Too all of you just starting, hang in there you will get through this. All of the women on this forum are angels and will help guide you through you're journey. Even if you loose hair, know this. IT WILL GROW IN FASTER AND STRONGER because of the cold caps. Women I know who did chemo at the same time as I are still bare. So it does work it many ways. Take care all and happy holidays
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Momof4girls: yes, I've coached several women with other cancers. Check the website or with Frank as to the particular chemo cocktail.
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Dexxy- thanks much for the update..especially with the clinical trial.....i think it is so valuble to share and check in....I read and reread this thread when I was going through chemo...it saved me from what I called 'The Ledge'.....this time last year I was just getting ready for my 3rd TC...and finally thinking I would keep my hair...at least most of it....but still stressing!!.... I actually had the scalp aches, a creepy feeling...and as mdg said like a ponytail ache.. I have a lot to be thankful for this holiday season...what a difference a year makes......
Blessings to all....Lisa0 -
Thanks for the update Dexxy!
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