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 07:04PM

Posted on: Jun 14, 2009 07:04PM

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-
Log in to post a reply

Page 5 of 2,146 (21,459 results)

Log in to post a reply

Aug 20, 2009 12:20AM - edited Aug 20, 2009 12:49AM by NewportLori

I am the woman that "makingway" has been helping with using the Penguin Cold Caps and I confirm that I still have most of my hair 26 days after my first TC chemo and 5 days into my second cycle! 

I did lose quite a bit of hair at the nape of my neck after the first chemo cycle, but I attribute that to unfortunate timing.  We were only able to pick up the caps the same morning of my first chemo and they were not pre-cooled.  We had to cool them with dry ice quickly and had no opportunity to practice.  Also, because I have a larger than normal head, the caps did not fit as tightly as possible at my neck hairline.  I could tell that the nape of my neck wasn't getting sufficiently cooled and fully expected to lose hair there, as indeed I did.

However, most people meeting me would never detect that I have any hair loss at all.  The biggest clue for those who know me well would be that my hair is not as "styled" as usual as I am being as gentle as I can to my hair and not subjecting it to heat or styling products and am even washing it less frequently.

I felt that my oncologist's office staff expected my attempt to fail.  They seemed surprised when I showed up with a full head of hair for my second treatment and warned me that sometimes the hair doesn't fall out until the second cycle.  I lost enough at the nape of my neck to know that the chemo had it's effect with hair that wasn't sufficiently cooled.  However, I had very little loss to the area that I could tell was well-cooled -- my main skull cap.  They will likely be surprised when I show up with hair next time too.

At this point, I am a believer!

Dx 5/28/2009, IDC, 5cm, Stage IIIB, Grade 2, 3/4 nodes, ER+/PR-, HER2-
Log in to post a reply

Aug 20, 2009 02:35PM London-Virginia wrote:

Congratulations Lori!

My first chemo is tomorrow and I am booked for cold cap and determined to give it a go!

thanks for sharing the good news -

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
Log in to post a reply

Aug 20, 2009 02:54PM NewportLori wrote:

Best wishes for no major SE from your first chemo Virginia.  Since you're in the UK, I assume there will be professionals to help you with the cold caps and that they will have uniform coolness (harder to get when using dry ice in a picnic cooler).

Let us know how you do!

Dx 5/28/2009, IDC, 5cm, Stage IIIB, Grade 2, 3/4 nodes, ER+/PR-, HER2-
Log in to post a reply

Aug 20, 2009 03:00PM London-Virginia wrote:

hey there in California!

I am going to be using the thing that looks like a salon hairdryer but is actually the "fridge" hat as opposed to the frozen free ranging hats.     I think in a lot of places they would prefer for something to fail because they don't want to faff around with preparing the hats.  I haven't had that at my place yet, but have had several reports of this from other people in the UK.

Yoohoo world - I AM USING THE BLOODY HATS.....

best wishes to you Lori and continue to be

a cool California girl...........xxx

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
Log in to post a reply

Aug 20, 2009 06:08PM gmp300 wrote:

Hello Everyone,  I just popped in and Iam happy to see others trying the cold caps.  They do Work.  Iam 3 weeks post chemo and I have all of my hair!!  I look like I never had chemo!   they will be FDA approved someday.  They are working on that.  then everyone can at least know about them.  Good Luck to anyone using them!!  Geri

Dx 3/23/2009, ILC, <1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2-
Log in to post a reply

Aug 20, 2009 07:17PM London-Virginia wrote:

Thanks Geri

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
Log in to post a reply

Aug 20, 2009 09:37PM - edited Aug 20, 2009 11:29PM by MTG

Hi Ladies ! I'm a brand new member of our little club. Had a lumpectomy on July 23rd, met with 2 med oncs and am about to find out if I can eek by with only radiation and hormone therapy or if chemo is a must. Waiting for the results of an OncotypeDX test and one last consult. If I do wind up with chemo (realistically, I almost definitely will) then I'm joining you clever individuals and definitely going with a cold cap ! (IMHO, why would anyone chose to lose their hair ?) Anyway, if I may, I've got 3 questions for those of you who who've already been down this road: 

1) How far in advance do I have to contact the Penguin people & order Caps ? (If necessary, I'd like to start chemo the week after next) 

2) Are the caps as effective with AC (Adriamycin/ doxorubicin + Cytoxan/ Cyclophosphamide) as they are with TC ?

3) Are 2 helpers necessary or is one quick handed and much appreciated brother sufficient. (Like Newport Lori, I'm single but I've got a wonderful brother who's been with me every step. However coming up with a 2nd helper isn't so easybut I will if it's necessary.)

Thanks. And, by the way, thanks as well to all of you for posting. Reading about your stories helps me to focus on the positive steps I can take while dealing with this PITA (pain in the...).

M Dx 6/30/2009, IDC, 1cm, Stage I, 0/1 nodes, ER+/PR+, HER2-
Log in to post a reply

Aug 20, 2009 09:45PM Can-D wrote:

Hi all! I have completed by chemo...finally!!  I still have no bald spots and a full covering, even with my harsh treatments.  I did thin, but my hair started to regrow 4 weeks ago and i have about 1/4-1/2 inch regrowth already where it did thin, especially noticable where the caps weren't fitted properly and the hair fell out around my ears.  I attribute this to the cold caps and my hair follicles not being damaged that much.  Even though I thinned, I would definitely say it was worth it and would use them again.  Good luck to all that are using the caps or do in the future!!!!

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-
Log in to post a reply

Aug 21, 2009 11:47PM makingway wrote:

Geri and Can-D-I'm so happy you made the choice to TRY and keep your hair and best of all you WERE SUCCESSFUL!!

MTG- I don't think the caps are as efficient with Adriamycin. Go to the website.It shows the effectiveness based on the chemo drugs you're given www.msc-worldwide.com/index.html You don't need 2 helpers, just one will do. Watch the video on the website. It shows how to put them on. Have your brother watch it a couple of times. Have him practice putting them on you in advance. I would recommend getting them at least 2 weeks in advance, so, you can play with them to figure out how long it takes to get the Caps at the proper temperature. While at the Oncologist, I might find, out of the 14 caps we have in the cooler, only 1 or 2 are at the right temperature I need them to be when it comes time to replace it. I'm working on fine-tuning this. 

Virginia-London- How cold does the hair cooler get that you are using? I'd like to see a photo of it. Is it like an old fashined hair dryer or is it like a bag filled with cold air. I'm curious...

Visit my website for helpful tips when using cold caps:penguincoldcap.wix.com/help Dx 3/2/2009, ILC, 4cm, Stage IIB, Grade 2, 1/19 nodes, ER+/PR+, HER2-
Log in to post a reply

Aug 22, 2009 04:23AM London-Virginia wrote:

Hi there - I completed my first treatment with FEC yesterday.  16.66% of my treatment complete!

The device only looks like a salon hairdrey - there is rectangle floor standing freezing unit; tubes come from it to the freezing element which is soemthing like the shape of a big bathing cap and colouted nice shades of blue and green.  Things like the elements from a fridge wind round within the "cap".  The tubes are obviously providing cold and taking away warmth.  The caps come in slightly different sizes.  IT is put over the head, and then over that another cap with a chin strap and also another band tightens around one's forehad, all to make the cooling cap tight to the scalp.  They turn the device on so it cools, and it was put on me about 30 mins before my tratment.  I had it on all durinf the treatment and then for about one hour after.  You can move around the room a bit if you want to as the tubes are long.  ~The chemo nurse has workjed in the unir for a number of years and was very proefessional.  She says it can do better than 50% succesful for   most people.  She believes my hair (long) will be likely to thin, but is optimistic as to the outcome.    I could if I preferred have the other type of caps (which I think souhnd very likely the Penguin ones) if I wanted, but this way around I get to use a smaller room and I was on my own.  But if I choose to change to them it isn't a problem at all and they are commonly used there. There are several different sized rooms at the chemo unit, all of which are bright and cheerful.  The chemo nurses w3ere pro the use of cold caps, whilst nurses elewhere in the hospital in different units,  tend to be more negative.  I think that is purely becuase they don't know the real skinny.  Also, it seems to be the overall mindset at the hospital to be extremely constrained about just about anything so my rule is to ignore pr3etty much anything negative I encounter!

Best of luck to all -

The entire process was perfectly ok.  There were moments that it was a bit uncomfortable, but the nurse was with me all the time I was having the infusions, so that distracted me.  By the time that was done, I felt find just to sit and read. 

I would give the treatment a go whatever chemo you are on -  at my central London hospital they let anyone try it and and can do no harm.

FEC is :  Flourouracil (aka 5FU), epirubicin and Cyclophosphamide..

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

Page 5 of 2,146 (21,459 results)

Scroll to top button