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

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

This is a place to discuss concerns, tips and strategies for all types of side effects from all types of medications and treatments, (chemo/rads/hormonal/targeted/pain meds/etc.

Posted on: Jun 14, 2009 04:04PM

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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Oct 19, 2009 04:21PM - edited Oct 19, 2009 04:24PM by NoSunshine

This Post was deleted by NoSunshine.
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Oct 19, 2009 08:56PM NewportLori wrote:

NoSunshine:  I hope the caps were cold enough so you can keep your hair in this first cycle.  My first cycle was pretty harrowing as well, as I was only able to pick up the caps that very morning and they weren't even pre-cooled in a freezer.

Just wanted to let you know that the 2 gallon ziplock type bags that I buy are actually made by Hefty, not Ziploc.  I get them at one of the larger Target stores as the smaller store nearest me doesn't carry them nor does my grocery store.  I would think that Walmart carries them as well. 

In my first cycle, because the nape of my neck didn't get cool enough,I started loosing hair there on day 14, and by day 17, I think most of what I was going to loose that cycle was already lost.  That was my most significant hair loss.  Ever since then, it has mainly been just thinning.  As I said, I am still able to go without a wig after 4 full cycles and a few days into my 5th TC cycle.

Very best wishes to you!

Dx 5/28/2009, IDC, 5cm, Stage IIIB, Grade 2, 3/4 nodes, ER+/PR-, HER2-
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Oct 20, 2009 02:06AM London-Virginia wrote:

What is the rationale behind wearing the caps between treatments?

Best wishes to all -

Virginia. Dx 5/9/2009, IDC, 2cm, Stage IIB, Grade 3, 1/2 nodes, ER+/PR+, HER2- Surgery 6/26/2009 Lumpectomy: Left; Lymph node removal: Left, Sentinel Hormonal Therapy 7/1/2009 Chemotherapy 10/5/2009 Adriamycin (doxorubicin), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Radiation Therapy 1/5/2010 Breast
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Oct 20, 2009 03:27PM NoSunshine wrote:

Hi Lori:

 Thanks for the information....I'm so nervous about the count down to day 21 (or 14-17 for that matter) to see if my hair will stay.  I'm prepared to lose some of it due to thinning but I think I would be devastated if it all fell out....HOW BAD IS THAT!  I should just be happy they can treat my cancer.

London--The way Frank explained it to me is that your hair likes the cold and that just stimulates the follicles in between the treatments.  I'm sure there is someone else that can explain it better than me...but I'm going to do what he told me to do.  Hope that helps.

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Oct 20, 2009 10:23PM gmp300 wrote:

Hi NoSunshine--I know how you feel about worried about your hair falling out before 21 days.  Try not to worry to much.  I haven't spoke to anyone yet who lost there hair while using the cold caps.  I had alot of screw ups on my last tx and still kept my hair.  If anything you might get more thinning.  I highly doubt if you'll loose any clumps.  Stress can cause alopecia so don't stress out!!  Be positive!!

Hello Virginia--NoSunshine said it right.  I spoke to Frank and he is recommending wearing the caps in between whenever you fancy it to help stimulate hair growth.  Your hair likes the cold and will grow back quicker.  Something about bringing the blood supply and oxygen up to the follicles.  How are you doing?

Hi Newport Lori--Glad to see your hair is still hanging on!!  Frank spoke to me about the girls in California--I'm pretty sure he's talking about you.  Good luck with the rest of your tx's!  Don't forget to double strap the back of the cap.

Take Care Everyone--Geralyn

Dx 3/23/2009, ILC, <1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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Oct 21, 2009 02:36AM London-Virginia wrote:

Hello girls - I AM DOING OK BUT i MUST SAY, AS HOBBIES GO, CHEMO IS REALLY PANTS.

I will try out putting ice bags on my head between tx.  I am using a static machine at my hospital rather than the Penguins, but the results are fairly good - thinning more than anything.

Do you think it iws too risky to use something like Regaine during chemo?

Oddly enough, my hair, though thin, looks in very good condition and is very shiny.

Good luck all -

xxxxx

Virginia. Dx 5/9/2009, IDC, 2cm, Stage IIB, Grade 3, 1/2 nodes, ER+/PR+, HER2- Surgery 6/26/2009 Lumpectomy: Left; Lymph node removal: Left, Sentinel Hormonal Therapy 7/1/2009 Chemotherapy 10/5/2009 Adriamycin (doxorubicin), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Radiation Therapy 1/5/2010 Breast
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Oct 21, 2009 07:38AM gmp300 wrote:

Hello Virginia,

     Glad to hear your hair is in good condition.  I don't know idf your doctors gave you any hair care instructions during chemo?  I only washed my hair once a week with baby shampoo.  I didn't use conditioner.  And I held my hair when I combed (not brushed) it.  Also no hot irons, blow dryers etc.  You have to baby your hair because it did get some of the chemo drugs so you have to take extra special care.  Also I washed it with cool water.  Another thing I heard was to take silica tablets-it is suppose to be good for your hair.

Good Luck---Geralyn

Dx 3/23/2009, ILC, <1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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Oct 21, 2009 08:14AM London-Virginia wrote:

Very many thanks for all those helpful tips.

xxxxxxxxxx

Virginia. Dx 5/9/2009, IDC, 2cm, Stage IIB, Grade 3, 1/2 nodes, ER+/PR+, HER2- Surgery 6/26/2009 Lumpectomy: Left; Lymph node removal: Left, Sentinel Hormonal Therapy 7/1/2009 Chemotherapy 10/5/2009 Adriamycin (doxorubicin), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Radiation Therapy 1/5/2010 Breast
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Oct 21, 2009 02:36PM NoSunshine wrote:

Does anyone use dry shampoo between washes?  I can't stand how my hair smells (it seems like everything smells like chemo).  I don't know if it's my imagination (the smell) or not but I was considering using a dry shampoo...but don't know what type yet. 

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Oct 21, 2009 04:04PM London-Virginia wrote:

Might just be  chemo nose.  All sorts of stuff smells really funny to me.  Can't even be near a car with catalytic converter as the smell is too strong!

Virginia. Dx 5/9/2009, IDC, 2cm, Stage IIB, Grade 3, 1/2 nodes, ER+/PR+, HER2- Surgery 6/26/2009 Lumpectomy: Left; Lymph node removal: Left, Sentinel Hormonal Therapy 7/1/2009 Chemotherapy 10/5/2009 Adriamycin (doxorubicin), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Radiation Therapy 1/5/2010 Breast
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Oct 21, 2009 06:28PM gmp300 wrote:

Hello No Sunshine,

     I never used dry shampoo but I would be careful on using any products other than those that are tried and true.  You still have chemo residue in the hair follicles and you do not know how another chemical (in the shampoos etc) will react with the chemo drugs.  Be careful.  Geralyn

Dx 3/23/2009, ILC, <1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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Oct 30, 2009 09:12AM NoSunshine wrote:

Hi Everyone:

Just an update to let you guys know how the cold caps are working.  Today is day 15 from my first chemo treatment (TCH) and I have lost very little hair so far.  I don't know if it is "thinning" or if it is normal loss.  Since using the cold caps I wash my hair maybe once a week and don't even brush it most of the time (not an attractive look for someone with long hair) so the losses may be due to not brushing it that often.  So far I haven't lost any eyebrows, lashes or other body hair so the hair loss may be normal.  I've taken the caps out of the freezer and worn them on two separate dates as recommended by Frank.  My next treatment is on 11/06 and the chemo nurse told me that I should see significant hair loss by the time my second treatment rolls around (21 days) so hopefully the caps are working despite the fact that the temperature was not cold enough on the first chemo treatment.  I'll keep posting to let everyone know how it's going.

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Oct 30, 2009 11:59AM London-Virginia wrote:

Great job!

 I have done 4 of  6 FEC chemos, and I still have a lot of hair.

Good luck all -

xxxx

Virginia. Dx 5/9/2009, IDC, 2cm, Stage IIB, Grade 3, 1/2 nodes, ER+/PR+, HER2- Surgery 6/26/2009 Lumpectomy: Left; Lymph node removal: Left, Sentinel Hormonal Therapy 7/1/2009 Chemotherapy 10/5/2009 Adriamycin (doxorubicin), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Radiation Therapy 1/5/2010 Breast
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Oct 30, 2009 03:48PM NoSunshine wrote:

Hey London:

That's great news!!  It's encouraging for those of us waiting for day 21...I feel like if I still have hair by day 21 I'll be okay!!

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Oct 31, 2009 07:38AM malaika wrote:

Week 6 or 7..I've lost count...

I still have my hair. I have lost strands, but I have noticed that they aren't any longer than 8 inches or so...shorter than my hair length. I attribute it to loss from breakage (I have to be very careful with my hair in the moisturizing department and since I haven't been washing it at all and not moistening it regularly, it is breaking off). I notice that the amount that I have lost is far less actually than what I would lose combing and brushing my hair before chemo. So I am kind of blaise about it really. I would say that I'm not losing hair. The bald spot for over cooling is still there and glowing. And after losing that hair there, I know what losing hair really is. I'm not losing any anywhere else.

Dx IDC, Stage II, Grade 1, 2/23 nodes, ER+/PR-, HER2+
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Nov 1, 2009 07:50PM - edited Nov 1, 2009 07:54PM by NoSunshine

Hi All:

Malaika: Thanks for posting an update...that's great news that you still are not losing hair (other than breakage).  I wish I could say the same.  Since Oct.30th (15 days out from 1st chemo) my hair has been thinning.  I thought it was normal loss at first but I've have quite a few strands coming out for the past several days.  I think Can-D (oops..that was Geri instead) stated in one of her earlier posts that when she ran her hands through her hair she would lose strands...that is sort of what I'm seeing with mine.  My hair is very thick so no one would ever be able to tell at this point but it does make me nervous.  I washed my hair today (with baby shampoo) and was afraid that I would go bald during the process but lost very little hair during the process (including drying it with on the cool setting).  I'm not losing any "clumps" at this point and I have 5 days to go until day 21 so I'm hoping that this thinning will eventually slow down and/or stop for a while.  I don't know if it was because the cold caps weren't cold enough initially or that my hair is going to thin with the chemo anyway.  I'm just hoping that I don't have clumps falling out this week...I couldn't imagine losing my hair at this point...the thinning is horrifying enough!!  Keep your fingers crossed for me and I'll let everyone know how it goes this week. 

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Nov 2, 2009 03:58AM gmp300 wrote:

Hello,

     I have been reading your posts and just want to reassure you's that the thinning is normal.  Strands but no clumps.  I lost strands but noone can even tell that my hair thinned a little.  Only me because I know how my hair feels when I comb, wash and style it but to everyone else- no one can even notice a difference!!   Don't worry--I think that you's are good!!  Yeah!   Geralyn

               

Dx 3/23/2009, ILC, <1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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Nov 2, 2009 06:25AM NoSunshine wrote:

Hi Geralyn:

Thanks for responding...that makes me feel better that you know what I'm going through.  Does the thinning eventually stop?  I don't think anyone can and/or will be able to tell at this point but if it keeps thinning I won't have anything left after 5 more rounds of chemo!  It did seem like it was a bit less this morning....and still no clumps!  Yeah for that!!

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Nov 2, 2009 07:43PM - edited Nov 2, 2009 07:45PM by gmp300

Hello No Sunshine,

     Yes --I was worried to.  Like I said before-everyday I thanked God for saving my hair as I looked down at my pillow!  Yeah--no hair.  I did loose strands and so did everyone else that I talked to.  Some more - some less.  The women with the thicker hair loose more than the women with thinner hair.  Partly because some of the hairs are older and were ready to come out anyway and they just plain have more of it.   Remember when you brushed your hair and never worried about it falling out and your brush would be full of hair.  At least mine was and I never even worried about it.  Now if your using a comb your going to see even more than in a brush.

     Now my first 3 tx I lost strands by the 2nd week and it seemed to stop after a week or two.  My last tx I had screwed up quite a bit with the caps and I was worried about loosing my hair.  I did shed quite alot for a while--probably 3 weeks.  I was scared but it did finally stop and though I know how much I lost because I took care of my hair-NOBODY can even tell I had chemo.  To them my hair looks the same.  So Iam very happy.  I have a full head of hair and my follicles were protected from the damage of the chemo which in itself is the most important!!  Your follicles are not getting damaged and the hair that you do loose will grow healthy and faster.  

     I know how worrisome it is waiting for your hair to fall out (or stay in)  but try not to worry.  It WILL be fine and those are probably old hairs anyways that where going to come out soon.  Good Luck with the rest of your tx and keep us posted on your results.  Take Care --Geralyn

PS--Frank told me of a woman who kept her hair after 15 treatments!  You'll be OK!

Dx 3/23/2009, ILC, <1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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Nov 5, 2009 09:25AM NoSunshine wrote:

Hi Everyone:

I am now 20 days out and due for chemo no. 2 tomorrow.  Here are photos of my hair taken today-for some reason I look totally drunk in the photo (I'm not photogenic at all!!).  My hair is still thinning but not nearly as much as it was a couple of days ago.  I have lost my nose hair so now the post nasal drip is starting!  The hair on my legs is still there but not growing and comes out pretty easy if I pull on it with the tweezers, no under arm hair and the pubes are thinning...sorry if that is a bit TMI.  My eyebrows are still pretty thick yet my eyelashes are starting to thin.  Hope this helps those of you that are considering the Penguin Cold Caps.  As it stands right now they are working and are worth every cent that I paid to rent them!  I'll keep posting about how it's going.

20 Days Out" mce_src="

20 Days Out" mce_src="

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Nov 5, 2009 11:05AM Sea_nymph wrote:

Does anyone know if a cold cap doesn't work effectively, does it hamper normal hair regrowth?

Dx IDC, ER+/PR+, HER2-
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Nov 5, 2009 01:12PM NoSunshine wrote:

Hi Sea_nymph--the inventor of the caps has told us to wear them out of the freezer several times per week to stimulate the follicles.  I don't think they hamper normal hair regrowth and encourage regrowth instead.  It would probably be best to check with the inventor Frank Fonda to be sure http://www.msc-worldwide.com/.

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Nov 5, 2009 04:56PM Ang7 wrote:

Can I ask around how expensive these are to rent?

Ang

Very pleased Penguin Cold Cap user Dx 5/25/2009, IDC, 2cm, Stage IIA, Grade 2, 1/4 nodes, ER-/PR-, HER2+
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Nov 8, 2009 08:09AM gmp300 wrote:

NoSunshine,

     Nice hair!!  See -if it is thinning no one would notice!!  Looks like a full head of hair to me! 

Ang7,

     Send an email with questions to msc-worldwide and they will answer them as far as the cost goes.

Sea_nymph,

     Frank told me that your hair likes the cold.  Also the cold caps protect your hair follicles from getting damage from the chemo.  Which is why it takes so long for your hair to regrow after chemo (without the cold caps) and comes back different than before chemo.  Some woman also can experience permanent hair loss from chemo from the damage it causes your hair follicles.  So cold is good!!

Godd Luck to everyone, Geralyn

Dx 3/23/2009, ILC, <1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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Nov 8, 2009 08:35AM Can-D wrote:

Sea-nmyph, From my experience, even if you thin more than most, the cold caps will not hinder your regrowth. My hair that did thin began to immediately regrow during chemo! Although myhair is short now (I cut it super short because it had thinned and regrew and I had varied lengths) it is VERY thick again! So even if you thin, DO NOT stop using them. My hair was so thin at one point, tho no bald spots, that I wore a 'dew rag' under the caps cuz they were so cold.  I am now 11 weeks post chemo and my hair though short is so thick my hands get stuck in it!  Also, I lost all my lashes about a week or two after chemo. I started using Latisse about 4 weeks out of chemo and now my lashes are very thick and black. I will post a pic of them soon. Take care all!

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 8, 2009 11:34AM NewportLori wrote:

NoSunshine:  What beautiful, thick hair!  I think you will do very well with the caps. I didn't have nearly that much at the beginning.  Which chemo regimen are you on?

I had my 6th and last TC infusion on 11/6 and still have a lot of hair, although it has thinned substantially.  I blame a lot of it on my abnormally large head so the cold caps weren't able to cool the outer sections enough.  My hairline at my temples receeded and I lost a lot at the nape of my neck. 

Because we had difficulty getting the caps cooled uniformly (the top part would get the coldest), I often had my friend place caps that were too cold on the top, thinking that cooler was better than not cool enough.  I'm not sure that was the best strategy because they get stiff and are hard to mold to the head.  I also got a freezer burn and top of my scalp peeled.

I should know by Thanksgiving what my total hair loss will be. 

Best wishes to all the Cold Cap Gals!

Dx 5/28/2009, IDC, 5cm, Stage IIIB, Grade 2, 3/4 nodes, ER+/PR-, HER2-
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Nov 8, 2009 02:37PM NoSunshine wrote:

Hi Newport Lori:

Thanks!  I'm starting to get nervous because it is still thinning...some days more than others!  I really don't know where all this hair is coming from...I think probably around the sides and back were I don't think it gets cold enough.  I just hope it will hang in there until my infusions are over around the end of Jan.

Congrats to you for the last infusion...I know that must be a great feeling to be done with that part of the treatment.  I have 4 more to go...I am on Taxotere, Carboplain and Herceptin...6 (well 4 treatments left) treatments every three weeks.

This past time the caps got really cold (used in the Hefty 2 gallon bags you guys suggested) and we had to knead them to warm them up and I have a spot on the top of my head that may lose hair completely because like many of you the top of the caps gets REALLY COLD and hard to mold to your head.  We had a hard time finding consistent temperatures on the caps this go round but managed to get them fairly close.  I'm thinking the -25 to -28 degree range is better than -30 to -31 degrees.

Can-d:  You pictures still encourage me since I know that your hair thinned quite a bit also...I'm hoping that even if mine keeps thinning like it is that I will still manage to keep a good deal of it...even if I have to get it cut shorter.  I took Franks advice and did not cut my hair in the beginning.

I'll keep posting and letting you guys know how it's going.  Take care everyone!!

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Nov 10, 2009 05:56AM Sea_nymph wrote:

Why does frank say not to cut your hair? I talked to him and he told me that too. he's out of town right now or I would ask him. Also, how do you know your head isn't getting frostbite or freezer burn? If it does get a bit of a frozen burn, does that prevent your hair from growing back?

Does anyone have Jessie's email. she works at penguin cold caps? I can't get their e-mail off the pop-up windows from the website for some reason.

 Has anyone used penguin cold caps, experienced thinning, stopped chemo, and had their hair thinned but start to grow back? If so, how long does it take? And does it come back the same way? 

Dx IDC, ER+/PR+, HER2-
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Nov 10, 2009 09:27AM - edited Nov 10, 2009 09:29AM by NoSunshine

Sea_nymph--Frank told me not to cut my hair because the added weight of the "long" hair made my follicles stronger in preparation for chemo.  As far as the frost bite...my head started burning on one small area while wearing the cold caps and continued to burn after I finished wearing them.  My head has a bruise in that area but no flaking skin or irritation so I think I just got it too cold in that one spot. 

This is the email address that I got from Jesse:  penguincoldcaps@btinternet.com

Hope this info. help...

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Nov 11, 2009 11:30PM Sea_nymph wrote:

Wow, CanD, thanks for that reply! That is great news. Do you think your hiar might be thicker than before chemo even? I hope so! I have fine hair to start with. Speaking of it getting so cold under those caps, how can you tell if you might get frostbite when your scalp is numb from the cold already? Also, what did you use as a dew rag?

Dx IDC, ER+/PR+, HER2-

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