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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Jun 15, 2009 07:13AM NatureGrrl wrote:

My chemo is going to go on for so long that I can't see adding this to my infusion time... I spend enough time in that chair! :)  but for me the hair loss is a minor side effect compared to some of the others.  I know other women are more devastated by hair loss and would jump at the chance to save it.

This isn't something that ever came up as part of my treatment options, either... I'm interested in how many people have done it and how it's worked.  I know my SIL would sure opt for this if she had known about it!  Good luck to all, and Candy, good to hear it's working well for you. 

Carol, living out loud! fire-of-our-hope.blogspot.com/ Dx 4/2009, IDC, Stage IIA, Grade 3, 0/17 nodes, ER+/PR-, HER2+
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Jun 15, 2009 06:56PM - edited Jun 15, 2009 06:57PM by Can-D

NatureGirl-Thanks for your thoughts.  I leave immediately after my treatment and change the caps on the way home. They are somewhat cumbersome though.  I will be getting Taxotere after my FEC treatment and the way my ball rolls I'd be in the 6% that suffer permanent hair loss from taxotere and I am hoping the cold caps will keep this poison away from my follicles,....lol.  I hope your treatments are going as best they can and that your side effects are minimal. 

Best wishes, 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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Jun 16, 2009 06:25AM NatureGrrl wrote:

see what I know -- I thought you had to sit and wait for the cold cap treatment, didn't know you could leave! :)  And wow, I didn't realize some chemos caused permanent hair loss.  That would definitely change my motivation for using the cold caps. Again, I have lots to learn.  Good luck with your hair and with your treatment!! 

Carol, living out loud! fire-of-our-hope.blogspot.com/ Dx 4/2009, IDC, Stage IIA, Grade 3, 0/17 nodes, ER+/PR-, HER2+
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Jun 16, 2009 01:06PM - edited Jun 16, 2009 05:41PM by gmp300

Hi Candy, Just wondered how your still doing with your cold caps.  Iam on day 20 post chemo and I still have my hair but it is shedding quite a bit.  When I run my fingers thru it gently and slowly pull the ends I get quite a few strands of hair but no clumps. I still have all my hair and you would never notice.  Frank said you know it's working if you still have your hair on day21.  It still is freaky waiting to see what will happen!  I guess I just need some support since I've only talked to you and Nikole.  She is doing really well  with the cold caps.  She is done with her 5th tx one more to go.  She has talked to alot of other women before she started and they all said it works!

   I just feel some spots on my head that feel kind of tender and my scalp is peeling on the top of my head.  That is where it was the coldest.  I wondered if you felt anything on your scalp?  And I can't remeber when you said the shedding stopped or slowed down?  My 2nd tx is Thursday and I hope I still need my cold caps!! 

 I pray all is well with you.  I know you start taxatere (I think) soon.  Just for some reassurance the doctor here in Michigan who did the trials said that the cold caps worked very well with Taxatere and Cytoxin.  She also mentioned that with some of the harder dugs that she wants to try keeping the caps on longer than 3 hours afterwards.  It might take longer to process other drugs.  I might keep them on longer my 2nd time just for the reassurance, if I can take it!  Good Luck to you and let me know how your doing.--Geri

Dx 3/23/2009, ILC, <1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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Jun 16, 2009 10:15PM Can-D wrote:

Geralyn--Yes the shedding has slowed down, but I am still losing more strands than normal.  My husband and friends tell me that if you didnt know what my hair looked like before you wouldn't notice, but I do.  I have been putting my lost hair in a bag and you would think by looking at it that I have lost all my hair...lol.  I will send you the pic I took yesterday, day 42.  I did give myself a bit of frostbite on my part, and yes my scalp flaked and even somewhat scabbed on my part.  Please don't be discouraged by the thinning, I'm sure you will not require a wig.  I have been wearing a ventilated rafia cowboy hat just cuz my hair looks like I haven't tended to it in months.  If you want to talk, please don't hestitate to call.

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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Jun 17, 2009 07:39AM - edited Jun 17, 2009 07:44AM by Can-D

Dear Gg08--I am happy to hear that you are doing great and your journey through this treatment hell is over.  I have not lost any eyebrows or eyelashs.  My eyebrows that were plucked have not grown back tho.  I am using a 'cold band' that wraps around my eyebrows.  The bands are MUCH more painful than the caps; however, it is only for the first minute or two that you place them on.  I too have lost hair on the other parts of my body, but that's not a bad thing.  I will keep my hair situation updated on this post and even if I come out with very thin hair I will be happy. 

So how was the ice on your hands and feet?  I have thought about using ice during my taxotere but the thought of another freezing place on my body during treatment makes me ill.  How long did you use the ice? The caps go on an hour before treatment and for 3 hours after treatment. 

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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Jun 17, 2009 08:07AM - edited Jun 17, 2009 08:11AM by gmp300

Gg08--Hello there!  About the eyelashes and eyebrows!  I haven't tried it but I spoke to a gal who is using Latrisse (Iam not sure if that is how you spell it).  She said you need a prescription for it.  You put it on your eyelid like mascara.  She even puts it on her eyebrows.  She is going thru chemo right now and is done with her 5th tx and she said her eyelashes are growing in thick!  She even puts it on here eyebrows.  My ps doesn't know much about it yet, it is quite new and he likes to wait a while to see how it does.  He is going to read up on it and let me know if he will write me a prescription.  My onc is not sure either if he wants me to use it during chemo but he never heard of it either.  Once I get it I will show it to him.   I read on these threads about other women using it too.  Check it out.  Take Care

Candy-it's nice to hear your still doing good.  Hang in there.  When do you start Taxatere?  I did really well on it if that helps.  I know your other tx wasn't so pleasant.  I just keep chugging water  (lots) for at least the first 5 days after tx.  The only Se I had was chemo brain.  I got tired easier but was never in bed.  I was one of the fortunate ones.  I believe it is the water that helped.  Hopefully your last tx go better for you!  I will pray for that.  I will probably call you soon.  It's nice talking to you.  You can call me too.  

 I get my 2nd tx tomorrow at 9:00am and I still have my hair!  Today is day 21.  I think  Iam out of the woods and these cold caps are working!  I believe God has his hand on this and they are!  I would think I would be loosing more hair by now.  Take Care and Keep in touch-Geri

About the nails-Frank told me that our nails have 6 layers  and that by the time the drugs effect all the layers I will be done with chemo so not to worry about it.  Iam getting 4x.  You only need 3tx (right?)  You should be fine but I can't say for sure.  That was coming from Frank.

Dx 3/23/2009, ILC, <1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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Jun 17, 2009 03:59PM gmp300 wrote:

Bonnie, I first heard about cold caps by my onc who tried them 10 years ago.  They didn't work back then but they where different ones back then.  Then I read about ice mits and footies for finger nails and toe nails, or eat posicles or chew on ice for the metal taste  in your mouth.  I though there is something with the ice! 

Before my chemo I read Can-D's thread asking if anyone else is using the Penguin Cold Caps?  I was interested so I went on their web site.  It is Penguin Cold Caps for hair loss.  It sounded to good to be true.  I PM'd  Can-D and spoke to her and it is working for her.  I emailed the company and the inventor called me from London!  He is very nice and helpful!   He helped me get my caps before my chemo.  You rent them for 29.00 a cap and I needed 14 of them.  You wear them during your infusion and 3 hours after every treatment.  You keep them in the freezer and then put them on dry ice in a cooler and go for your chemo.  
Can-d helped me because she told me you need 2 people to help with it,  And we were all busy.  I drank a quart 1/2 of water per hour so I was busy drinking and peeing and my dh and friend was busy getting the caps ready (right temp) and strapping them on my head!.  Chemo went by quick because we were all cracking up, I forgot what I was there for.  Well Iam 21 days post chemo and still have all my hair.  The inventor said if I had hair in 21 days it was working.  I lost some strands but no clumps.  My 2nd tx is tomorrow and I told the nurses I would be back either in a wig or with my cooler!  Iam bringing the cooler, Yeah!!!     I also spoke to another gal who used  and she spoke to alot of other woman.  I lot of us have done this on our own.  There are some hospitals and clinics doing trials on them.  I called ACF and asked who is doing a trial and she gave me a local hospital here in Michigan.  I called and spoke to the doctor who did the trial and she is excited about it and is doing more trials.  She studied this for 3 years.  She is trying to get it FDA approved so they can have a national trial.  Then more women can find out about this. I spoke to her before I ordered them for myself.   I didn't want to blurt anything out till I knew personally that it works but it seems to be.  Alot of the women who started tx with me have lost their hair already.   The doctor said the results are good with Taxatere and Cytoxin I should keep 90% of my hair.  Some drugs are not as good results.  You keep your hair but it thins out more but they are studying that right now.  It is very promising and I hope more women would find out about this.  It makes chemo not as bad if you an look yourself and feel good while you go thru it.  I know I prayed about this a long time and asked God to show me a way to keep my hair and I believe He did!  And I believe Iam to share it with others!  

If you have any more questions feel free to ask.  Iam sorry to hear that you are waiting for a reaccurance.  I beleive  in prayer and trusting Our Lord.  He is in control.  I pray you never have to go thru any of these tx  again.  Some reaccurrances are 30 years later.  My onc just told me about a woman in her 80's who had a reaccurrance 30 years later!!   I fugured if that was me I would be in my 80's.  I'll take 30 years!!!   (actually I want 0 years!)  We all do.  I prayer for a cure for everybody.  this is such a crazy disease.  Everyone is so different and nobody can tell you anything!!  Except all of us smart women!!!

Gott run, Take Care--Geri

Dx 3/23/2009, ILC, <1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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Jun 18, 2009 01:04AM gmp300 wrote:

Can-D--What is a good time to call you.  I don't know the time difference.  Iam in Michigan and right now it is 2:00 am.  Oh sh-t I should try to get some sleep.  My chemo is at 9:00am.  You are in Missouri- right?  Let me know.  I will be home tomorrow by 2:00p.m. and I plan on being home the rest of the night.  You can call me too.  I'd love to talk to you again.--Geri
Dx 3/23/2009, ILC, <1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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Jun 18, 2009 01:13AM gmp300 wrote:

Bonnie,  Iam sorry, I didn't mean that you were waiting for a reacuurance.  I said it wrong.  The docs are.  You on the other hand sound very upbeat and positive.  And an inspiration to all.  and to take an interest in the cold caps either for yourself or others is great!  Knowing you know Our Lord is the best medicine.  He is The Healer and Comforter.  Iam in His peace and you sound like you are too!  Isn't it great not to have to worry about everything and just give it to Him,  I love Him.

I also wanted to mention that if anyone finds a clinic or doctor who is trying the cold caps they can rent them from them.  It is alot cheaper.  Frank said $120.00.  Don't quote me because it could be different everywhere.  Hopefully more docs will try it.   Take Care and God Bless You-Geri

Dx 3/23/2009, ILC, <1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2-

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