Cold Caps Users Past and Present, to Save Hair
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I get taxol weekly for 12 weeks. Every third week I get herceptin after the taxol. The herceptin will continue for 1 year. I don't get neulasta.
I'm drinking so much water, but I've really adjusted to it pretty well. I really hope I get less and less afraid now that it's not such an unknown.
I do feel good today which is good since it's a busy day. I'm hoping to feel well enough for a gentle to moderate hike Sunday, but we'll see.
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Hi KD2016 - that was my exact question when I was diagnosed with the recurrence this year. I had a very large area of DCIS on the left. I had narrowly clear margins and my surgeon actually removed a small amount of chest wall because of the extent of the DCIS. My pathology was all grade 3 DCIS. My team's best guess is that there were likely 1 or 2 microscopic cancer cells left behind that then replicated causing the lump I felt. The lump developed at exactly the place they stopped removing chest wall tissue which leads everyone to believe this is what happened. They are calling it a stage 1 chest wall recurrence as I have no breast tissue left. What happened in my case only happens in 1-3% of women, too bad I wasn't in the 1% of people that win the lottery!
Brightness - way to go! You made it through the first cycle. Like everyone says just keep staying hydrated and using your meds for side effect management. Sounds like the caps went well
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travel girl, I'Ve been shedding pretty consistently since day 28 or so after my first TC, and would've been freaking out over the amount if it weren't for Elberama's pictures! I'm shedding much less than her pics, but I also didn't have her wonderfully full head of hair to start with either (fine hair already thinned a bit by perimenopause hormones).
This is day 8 after TC #3 (woohoo, only one more to go!!!). It's a shampoo day, and I'm afraid my part will be growing or my scalp will start peeking out at the sides.... but you ladies have shared so many great tips on how to work with what remains, so I know I can handle it!
Brightness, glad your first session is done and you are feeling well!
Willow
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Mandeola, thank you for your reply. I'm so sorry about that. My DCIS led to the discovery of IDC. I wish all of us never go through what we already have ever again.
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Hello! This is my first time posting, but I have been reading this thread for a while. I started Taxol/Herceptin therapy on August 17. I have had 5 of my 12 weekly Taxol treatments, and 2 of Herceptin, which will be every 3 weeks for 1 year. I am using cold caps, and so far haven't lost any hair. My question is, is it too soon to be encouraged by this, or is it too soon to tell
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Okay ladies, it's day 3 post chemo so I can finally wash my yucky, dirty hair. I seem to remember that I'm supposed to focus the shampoo on my scalp and use gentle fingers. I've got a soft spouted cup for rinsing. I can put conditioner on the ends only and rinse very well. Comb through with a wide tooth comb, using care not to pull at the roots. Is there anything else I need to remember?
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morning-sounds good- I use a spray on detangler===Johnsons baby formula and comb thru as you described-also use only tepid water. My hair is almost shoulder length and I tip my head over as usual and finger fluff with warm setting-,keeping heat away from scalp-and let it finish airdrying- it is naturally wavy so looks normal as usual- I have bangs and use a flat iron just on the lower bangs to straighten and dont pull-I am day 31 from starting 4 infusions of TC-2 to go and still have all my hair- am mildly shedding about 50-60 single strands a day-slightly more than I usualiy would= I still have my eyelashes and eyebrows==hardly any body hair but who cares about that- not me!- I wash my hair every 4/5 days and yes it is yucky by day 5 and feel so much better with it clean and fluffy----
How are you doing side effects wise? how many taxol treatments do you have to have--? best to you,C
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Well I washed my hair. I honestly think because I was so careful, I lost less than I normally do with a wash (I typically shed a lot- who knows if that might help or hurt me with this process). I'm letting it air dry and going off to run errands with it wet. It's funny, I find I don't want to bother with makeup lately either. It's as if I've given up trying to be attractive right now.
I've got the EES for my brows and need to order revitalash for my lashes. I'd really like to keep those.
As for SEs, I've had the first of 12 weekly taxol treatments and the first of yearly every three week herceptin treatments. I've got a sore throat and slightlyrunny nose. Yesterday I felt pretty rough. My shoulders and neck hurt from babying my port, which still hurts a lot and I felt just overall run down. I still managed to exercise and drink lots of water though since that's supposed to help push the toxins out of the body.
Emotionally I was low yesterday. Life goes on for everyone else while for me it seems as if I've stepped into someone else's life and I want my own back. Today I'm trying to look for my blessings again and stay positive.
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Brightness, we all go through the high and lows. Have a good cry, dust yourself off and pick yourself up. You have got this.
Question - what leave in conditioner does anyone recommend? I wanted something natural that will actually help with any tangles, etc. Any recommendations?
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Well, I'm 11 weeks PFC and tomorrow I'm taking the plunge and dyeing my hair. I know I'm a week before the recommended 12 weeks, but I just can't take the grays anymore. My hairdresser did a test section last week with no issues, so hopefully tomorrow will go okay as well. Once that's done, I'm going to purchase a halo extension to get me by until my hair fills in. Wish me luck!
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Travel girl, I'm sorry, I don't know anything about a leave in conditioner. I hope someone has an idea.
Soxfan, I can't wait to be able to treat my hair normally again. I hope the coloring goes well
My latest issue is dandruff and an itchy, yucky scalp. I had chemo Thursday so I washed Sunday and Tuesday. I have a sulfate free, paraben free shampoo. I'm careful to use cool water poured gently over my head and rinsed well. I didn't wash the way I normally would, but I tried to rub all my scalp gently to remove any dirt. Still, the itchiness is enough to make me second guess trying to save my hair.
What am I doing wrong? Is there a better shampoo I should try?
During cold capping I could feel the cold, but I didn't get the mad headache many people mentioned. I actually wondered if the caps were cold enough, although once I was done, my head did itch as the temp came back to normal. Maybe this just won't work for me? I don't want to lose my hair, but my confidence in doing it right is wavering.
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Brightness456 - Don't give up on capping. I didn't get the headache like others got, but I think I have a high tolerance for pain. That may be the case with you too. As long as you check the temperature of the cap before putting it on your head, I wouldn't worry about it. You're on Taxol, so you should have really good results. Even if you lose some hair, it's worth sticking with the capping because your hair will grow back in faster. Stay positive! You got this!
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I'm scheduled to start taking Tamoxifen soon and my onc mentioned that it causes hair loss. I'd hate to have gone through all of this trouble to save my hair only to lose it from a stupid pill. Has anyone had experience with Tamoxifen and hair loss?
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Soxfan75 - I have heard about hairloss with tamoxifen. May not happen right away or it may not happen at all. There's a whole message board for Tamoxifen - Bottle o'Tamoxifen.
I hope your hair coloring turns out nicely. Will be curious to know what brand you use.
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Thanks everyone for the kind words about my hair. I will try to post pics of before during and after on the pics board.
Mandeola - congrats on being done!!!!
Brightness - hang in there. I do remember having an itchy head and having to fight the reflex to scratch like crazy. With the delicate washing regimen and cool water, my hair never felt clean. If at all possible, try to distract yourself from thinking and looking at your hair.
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Soxfan 75 - I've been on Arimidex since last Aug and they say the same thing about Arimidex, however I have not had any hair loss because of it. With cold capping I retained about 20-30% of my hair and to this day my hair volume is not back to its original. It's probably about 60-70% of my original volume. I used Lattis after chemo on my lashes and brows, my lashes grow nicely and thick but lately they've thinned out a lot. My brows never grew back to the original thickness. And still no body hair. So not sure what chemo and Arimidex doing to my body. Of course everyone reacts differently. I took Viviscal for 8 months but stopped and taking biotin. My nails don't grow either! I know a lot of ladies taking tamoxifen and no hair loss
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Brightness - I had the same problem when I first started. My scalp was itchy and felt so gross to me, it's just because of the drastic change to your hair washing routine. You will get used to it I promise. It prob took me a good month of washing less frequently but now it's not a problem anymore, it definitely needs a wash by the fourth day but the itching subsided completely.Hang in there, it's worth it!
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Soxfan - I was on Tamoxifen for 5 years after my first bc diagnosis. I would say my hair thinned, think similar to normal menopause. It doesn't fall out -its not like that, its a gradual thinning. I took it from 36-41 years old - so I would say it accelerated my aging process in a few areas, other than that I didn't think about it and was happy to have the option of something helping me fight estrogen positive cancer for 5 years, I would have happily kept taking it for 10 years - wasn't the protocol in 2011 when I finished. Please don't be scared ladies, it worked so far. I just had bad luck and have another early stage bc in the other breast -- not estrogen positive ...
Now ... I had a meltdown moment today and need some encouragement. For context, I am on day 10 after #2 of 4 of TC .. I washed my hair and i could see lots of scalp and so much thinning at the top. It was the first time I could see it or maybe the first time I looked. I tried to prepare myself for this, and still had a meltdown moment ... I wanted to be one of those that had stellar cold capping results. I knew that was a long shot because of above. i wanted to defy the odds
- don't we all. Breath in/out, in/out - - yes that is me trying to talk to myself. Toppikk works and everyday people that don't know me can't tell yet. My issue is I am just projecting out what it means 4 of 4 and post PTC. Ohhhmmmm ...
I don't have any before or after photos, cause quite frankly I just told myself that I wasn't doing that -- that I would just be happy with whatever I could salvage. Now to embrace that in reality.
My current plan of attack is not to wash until my chemo #3, limit combing of any kind, and just LEAVE IT! Any other tips appreciated.
I have a plan B in place post chemo after my surgery - it is just going to be an interesting interim period. I guess it already is as I can't color it, dry, etc. I am sticking with it, just looking to this support board for some motivation today - cause who else would I talk about this crazy topic with.
Photo is pre-Toppikk build up and gray root touch up.
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travel Girl, I dont think the thinning is noticeable to anyone else! have only been washing my hair once a week too. I am working from home so I don't leave the house very often;) I'm 12 days after my first treatment and just dreading the big shed in the next few days!
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My fingers are crossed that the Tamoxifen won't undo everything I've endured to save my hair.
Travel_Girl - I agree with ToughCookie_21. Any thinning you have is barely noticeable and that's with the camera angle pointing at the top of your head. An angle that most people won't see anyway. Keep using the Toppik and if it gets too bad, they do make hair toppers that you can use to cover the area until it fills in. I have one, but didn't have to use it because my hair filled in that area rather quickly. You're sleeping on a silk pillowcase, right? If not, I'd definitely get one. I wish I had more advice for you, but it sounds like you're doing everything right.
I colored my hair today (11 weeks PFC). No issues so far. My hairdresser used All-Nutrient Hair Color. According to their website, it contains no:
- Sulfates
- Gluten
- Parabens
- Formaldehyde
- MEA nor DEA
- Triclosans
- Propylene glycol
- Carcinogens
- Phthalates
- Toxic materials nor heavy metals
- Pesticides, fungicides nor herbicides
It did a fantastic job coloring my grays, which I am soooo glad to see gone. Goodbye Loreal Root Cover Up! Well, at least for the next 4-6 weeks.
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Has anyone tried this brand of toppers?
ThinHairthick ... they state no clip topper with a headband -- it does have a clip in it, wondering if it would work?
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hi ladies! I'm 9 weeks PFC and doing great! Last week, I finally gently washed my hair under the shower! I think my shedding has tapered. Do you guys think it would be safe for me to dye my hair? I want to do a subtle balayage but I'm still nervous. How long should I wait to dye it? I feel like the recommended 6 months is insane in my situation
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Sherry, I broke all the rules and colored at 7 weeks PFC. I couldn't stand the gray any longer! Iwas not shedding and hadn't shed much at all on weekly taxol.
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And it was okay for you? I always get nervous with the next milestone... I think if I make one wrong move my hair will just detach but I think I'm in the clear now. Did you use any special dye?
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Sherry - I used Clairol Beautiful, which has no ammonia, etc. I had my usual salon color person apply it. I didn't sit under heat the first time, so it didn't take real well, but my hair looked much better. The second time I used it (four weeks later), I sat under heat and it "took" better. Then after that we went back to the usual salon color product. I had no ill effects at all from coloring. I would have waited longer had I been shedding.
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sherry, I have used the Clairol Beautiful advanced grey solution for several months now. I'm sure started using it before 9 weeks PFC. I used a color brush and painted it on , making sure not to put on my scalp. The advanced grey solution does not require heat, just ambient air temp. I was shocked that my grey resistant hair would take this temporary color, but it has. So I would highly recommend it as an interim step from using powders and the spray on Loreal color. I have yet to use a permanent color (I am almost 5 months PFC) but will most likely in the next month. Good luck And hope you find this as a good interim solution as I have
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Travel girl--Hang in there!!! You've got this!!! All of the hair you save is more than what you would lose if you didn't cap. I had a different protocol than you, but I still recall the terror I would feel if I felt I was losing more hair than the tx before, the hair wash before. I counted my hair loss at each shampoo--I am a data person, so my log gave me a reality check of what was really happening. Take this one day at a time, draw strength from your loved ones and a higher power and support from those on this site. Your are going to be just fine
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Brightness, your tx protocol is HIGHLY successful in retaining your hair with capping.Same as mine, very little hair loss. I also didn't have the brain freeze that a lot of people felt with capping. So don't worry that you are tolerating it well. Just make sure that you follow the PCC protocol and wash your hair 3 days after tx to rid your scalp of the chemo. I used, and am still using, Acure clarifying shampoo. At the end of chemo, I felt that I had a crusty portion of my scalp at the crown. I continued my same protocol the weeks after chemo, and it seemedto resolve itself. I used a squeeze bottle, diluting shampoo with water and very gently using my fingers to massage my scalp, no scrubbing or using fingernails. You will do great with this! One day at a time.
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Soxfan, thanks for the recommendation for hair color. I will be trying a permanent color soon. Thanks again!!! Good luck wth the tamoxifen. Will be thinking of you
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Brightness, I agree with Mandeola that your hair/scalp will adapt to your new regimen. Almost 5 months PFC, I still wash no more than twice a week, sometimes every 6 days or so, and I used to wash every third day prior to chemo. It is a new "normal". You will do great
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