Topic: Cold Caps Users Past and Present, to Save Hair

Forum: Managing Side Effects of Breast Cancer and Its Treatment —

Posted on: Jun 14, 2009 06:04PM

Posted on: Jun 14, 2009 06:04PM

Can-D wrote:

Hi all, I wanted to start a forum for all us that are using the cold caps to try to save our hair.  I am on FEC100 X3 followed by Taxotere X3.  My dosage unfortunately is not a guaranteed success.  I am 40 days out from my first treatment and will have my third June 17.  So far I have thinned but have not required a wig.  I have no bald spots; however, around my right ear is the thinnest..I think because the cap wasn't tight there.  All in all, I am pleased to still have a good covering.  If you are using or have used the Cold Caps, I would love to hear your experience.  Take care, Candy

FEC100 X3 followed by Taxotere X3, Bilateral Mx w/ immediate reconstruction..Wake Me Up When September Ends!!! Dx 3/19/2009, IDC, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2-
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Nov 11, 2012 04:37PM Sonnet wrote:

Well, I thought I'd share my PCC update.  I am now on day 11 following my third round of TC (one more to go), and at this point I have to say that I don't think I have lost ANY hair, other than the normal amount that I would typically expect to find in my hairbrush. After each chemo, my scalp has felt a little sore for a few days, which I'm guessing is probably "near frostbite" - not really frostbite, but irritation nonetheless. I've been using a "follicle stimulator" product made by Mediceuticals and otherwise following the protocol - gently washing twice per week, no heat, almost no blow drying, no color. So the hair I have looks pretty danged crappy - but it'll be much easier to fix in one day at the salon than in a year of regrowing!  Anyway, here's my question/concern - I keep reading about people who experience significant shedding after chemo is over.  If that describes you, did you already have some shedding along the way which continued and/or increased?  Or were you like me - no shedding during chemo, but lots afterwards?  I'm trying to gauge the extent to which I may actually have dodged this bullet!  Thanks! Sonnet

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Nov 11, 2012 05:23PM Lmflynn wrote:

Sonnet~. I finished chemo 1-13-11... I had barely shed any hair up until that point....normal amounts, once in shower I got a clump of five hairs and was sure it would all fall out...of course it never did. I did shed until July 4th ....I would say I lost 25 - 30% of my hair by then....but two things.. no one could tell, seriously not even my hair dresser...I shed evenly bald spots anywhere.....that same hairdresser also told me I had 2-3 inch hairs coming out everywhere .... We laughed about sprouting hair.....I think the best part of using the caps is that what sheds grows back ...quick!....while many wait 10-12 weeks to see growth after chemo....we actually grow new hairs during....

Some people don't shed much through the entire process....I am basically vegetarian, and now Frank recommends iron...he used to anecdotally say meat eaters did better, I also did not take silica, it is now recommended.....I did take B6 and l- glutamine.

I think we are all different, but the common outcome is we keep most our hair. And while like for me I shed quite a bit consistently for about 6 months....I still kept most my hair and no one could oncologist hugged me at my last appointment and ran her fingers through my hair in disbelief...but said ahhh lovely hair. She had tried them in England 20 years ago and was sure I would lose my hair. She now tells all who need to go through chemo and they have a freezer.

I feel like an "elder" in the group now.... I felt like I had a decent chance to save my hair when I started, but still prepared for it not to work...but now there is just too much success, too many women young and old, it works....especially with the TC and TCH still is such a shame more people aren't told and consulted that this is an option....

Best to all, Lisa

Dx 7/12/2010, IDC, <1cm, Stage IA, Grade 3, 0/9 nodes, ER-/PR-, HER2- Chemotherapy 11/13/2010 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Nov 11, 2012 05:37PM Sonnet wrote:

Lisa - So when did you START shedding? (I mean, above and beyond the norm.)

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Nov 11, 2012 05:55PM PatinMN wrote:

Sonnet, I'm with you - I've finished 8 of 12 taxol + herceptin treatments and have not shed any hair at all, other than what I would consider to be normal.  I'm sort of waiting for the shoe to drop, and Lmflynn's story of shedding post-chemo, after not shedding during chemo, is just what I DIDN'T want to hear. Tongue Out  I've been secretly hoping to be able to cut and color my hair in early January (I'll finish chemo on December 7), but I guess that depends on shedding.  Who knows, maybe by January I will have learned to love my dark brown hair with long gray roots!

Dx 7/13/2012, IDC, <1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2+ Surgery 7/31/2012 Lumpectomy: Left Targeted Therapy 9/19/2012 Herceptin (trastuzumab) Chemotherapy 9/19/2012 Taxol (paclitaxel) Radiation Therapy 1/7/2013 Breast Hormonal Therapy 3/31/2013
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Nov 11, 2012 06:35PM TheLadyGrey wrote:

I lost no hair during chemo (TCH x 4).

I started shedding a few weeks after the last chemo and shed for five months. Nothing terribly dramatic, but definitely noticeable by me because normally I don't shed at all. I maintained full coverage save the ear area -- I think everyone loses that. No one would have ever suspected I was in chemo.

My hairdresser reckons I lost 25-30% of my hair and I think that's about right. But that was ALL after chemo. I never got freaked out about it because by then I knew the caps work.

She said the regrowth is evenly spread around my head -- no patches. I have thin fine straight hair and the overall regrowth is I guess thin, fine and straight as I have no curls peaking through like the corkscrews at the nape of my neck.

I'm a carnivore. I took no supplements during chemo (MO asked if I had been taking anything prior to and when I said no, she said no). I took biotin and iron for several months after -- stopped because I am too lazy to go get more, which I really must do as my gynocologists has put me on calcium and something else.

I did walk or do the elliptical 5 days a week on average. Many days that was a huge struggle but I still did it more often than not, and it ALWAYS made me feel better which was seriously annoying because the next time I felt like crap (i.e., the next day) I knew I needed to get moving which was the absolute last thing I ever wanted to do.

I also drank gallons of water -- I need to start doing that again too. I think exercise and water are the best things you can do for your hair and the rest of your mental and physical self. Get that heart pumping and all systems moving and get those chemicals OUT ASAP. I joked that had it been an option, I would have done the infusions on a treadmill with a catheter.

Surgery 10/9/2011 Mastectomy: Left; Reconstruction (left) Dx 11/1/2011, IDC, <1cm, Stage IB, Grade 3, 0/1 nodes, ER-/PR-, HER2+ Targeted Therapy 11/11/2011 Herceptin (trastuzumab) Chemotherapy 11/18/2011 Carboplatin (Paraplatin), Taxotere (docetaxel) Hormonal Therapy 2/29/2012
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Nov 11, 2012 06:52PM dancetrancer wrote:

ndmk - 4 vs 6 question:  I don't know for sure.  I would suspect slightly more shedding with 6, just b/c of the additional opportunity for chemo exposure - but that is just a guess on my part.  I imagine we have some successful X6 people on here who can comment. 

sonnet - I started shedding I think around day 21 or 22 after my first TCH, and it continued thereafter.  It varied in intensity up and down, but overall lasted through chemo and about 4 months PFC when it really started slowing down.  

Cold caps work! TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Nov 11, 2012 07:25PM Laura5 wrote:

ndmk, PatinMN, and Sonnet, I had 6 TCH and really did not shed at all until after I finished. I don't remember when it started, but for me it only lasted a few weeks, and like TheLadyGrey, I already knew the caps had worked so I was not freaked out. I also took Silica per Frank's advice.

Dx 6/3/2011, IDC, 2cm, Stage I, Grade 3, ER-/PR-, HER2+ Chemotherapy 8/24/2011 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Nov 11, 2012 09:59PM sebm9 wrote:

ndmk, I'm sorry for your diagnosis but congratulations on finding out about PCCs. They have fantastic results with TC chemos whether you have 4 or 6 - great results. You will want to make extra efforts to stay as cool as possible in the Hawaiian air (I'm familiar with it! :-)) but otherwise, keep to your normal routine as much as you can, especially any kind of exercise. I can email you my writeup (it's very extensive) if you send me/PM me your email.

We had a couple of days where our dry ice had to last 2 days; we could only buy in 50# bags, but found that 100# of pellets -- kept in the cooler and kept in their bags, so the ice kept itself cold -- was plenty fine and in fact, we had extra left over. In Hawaii, I'd suggest getting a bit more than you think you'll need that first day. I'd also check into the Rapunzel Project, which can donate freezers for the caps to your cancer center. They may not get it in time for your first infusion, but for subsequent infusions it can make things much simpler (I always recommend keeping some dry ice on hand anyway, in case the freezer temp is off or if you are not doing your final 4 hours at the center).


Dx 2/3/2010, IDC, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Nov 12, 2012 05:07PM reneerDSM wrote:

Any advise for hair coloring at the salon at 16 weeks PFC?   I plan on using a wash out color but any advise about what brands everyone has used.

Thank you !!

Dx 5/2010, IDC, 2cm, Stage IIB, Grade 1, 0/2 nodes, ER+/PR+, HER2- Chemotherapy 5/6/2012 Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide) Hormonal Therapy 9/14/2012 Arimidex (anastrozole) Radiation Therapy 9/19/2012 Breast, Lymph nodes
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Nov 12, 2012 06:32PM Lmflynn wrote:

I started shedding about three weeks post chemo, i shed a little during chemo...more problems with scaling during was even shedding after for 5-6 months....similar to what most are saying.... I freaked a little wondering when it would stop....but the minute I quit worrying about it I stopped. I was on a beach vacation for 4th of July and had not washed my hair in warm water for 9 months...and finally said what the shampoo/shower Ive ever had!....and seriously that is when I quit shedding....

Dx 7/12/2010, IDC, <1cm, Stage IA, Grade 3, 0/9 nodes, ER-/PR-, HER2- Chemotherapy 11/13/2010 Cytoxan (cyclophosphamide), Taxotere (docetaxel)

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