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-
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Nov 27, 2012 10:55PM Laura5 wrote:

Tlym, Bravo to you and your helper. Telling you to finish post chemo in the lobby was ludicrous! If they are doing a study there, you should tell whomever is in charge about that.

ndmk, I took an Alieve and the caps only hurt for a few minutes.

btrflynaia, Wanting to keep your hair is not so much about vanity, as it is about trying to keep a semblance of normalcy and privacy. Rapunzel's address ends with .org rather than .com.

Dx 6/3/2011, IDC, 2cm, Stage I, Grade 3, ER-/PR-, HER2+ Chemotherapy 8/25/2011 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Nov 28, 2012 01:10AM makingway wrote:

FYI ladies-The headband was my idea 3 years ago...Originally the bands were called 'eyebrow bands'. At the time I was helping a woman who had a large head and the caps didn't provide good coverage. I came up with the idea and shared it with Frank-the inventor. In the years I have been helping Penguin cold cap users I have never used the bands for the eyebrows. It's simply not worth the added discomfort. The brows, if lost at all, are usually lost after completing chemo. They also grow back very quickly. A while back they were going to eliminate the bands entirely!!! I spoke with Frank and told him how necessary the bands were in providing the proper coverage for the nape of the neck, which you might notice doesn't have much gel (the cap also heats up faster in that area), and also the temple area where there are gaps. I use the bands with every woman I help, not only those with a large head. Thankfully the bands (whatever they choose to call them) are still available because they are very necessary if you don't want to lose hair at the temples and nape of the neck.

Tylm-Your experience reminded me of a simliar funny story. A woman I was helping was at a very small, busy oncology clinic. It was clear the staff didn't want to accomodate us. They said we would have to keep the coolers in the waiting room. We began the cold cap process there-in the waiting room. Luckily, the woman I was helping wasn't shy about being seen with a cap on her head. We got lots of looks, and questions about what we were doing. We were both more than happy to share information about the cold caps with others who were curious. I don't think the staff liked all the attention we were getting-kinda backfired on them.They seemed much more accomodating the next time we were there.

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-
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Nov 28, 2012 02:00PM TheLadyGrey wrote:

We began the cold cap process there-in the waiting room. Luckily, the woman I was helping wasn't shy about being seen with a cap on her head. We got lots of looks, and questions about what we were doing. We were both more than happy to share information about the cold caps with others who were curious. I don't think the staff liked all the attention we were getting-kinda backfired on them.They seemed much more accomodating the next time we were there.

This was my exact experience.  We started the caps in the waiting room -- figured that having them on longer than required was always going to be OK, but having them on shorter than required was going to be a big problem.   Lo and behold were always ushered back within 10 minutes.  

At my third chemo, a bald woman in the waiting room asked me what I was doing.  When I explained the system to her she started crying and said "I wish I had been given that choice."  I felt horrible for her.  

Surgery 10/10/2011 Mastectomy: Left; Reconstruction (left) Dx 11/1/2011, IDC, <1cm, Stage IB, Grade 3, 0/1 nodes, ER-/PR-, HER2+ Targeted Therapy 11/12/2011 Herceptin (trastuzumab) Chemotherapy 11/19/2011 Carboplatin (Paraplatin), Taxotere (docetaxel) Hormonal Therapy 3/1/2012
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Nov 28, 2012 02:31PM Hortense wrote:

"I wish I had been given that choice."

I have heard this so often, and it's always saddening. I hope to goodness someone on a heavily viewed TV show would cover cold caps so that they would get the wide exposure they deserve. Anyone have any connections?

Cold Cap user - kept my hair Dx 1/24/2012, IDC, 1cm, Stage II, Grade 2, 2/2 nodes, ER+/PR+, HER2- Surgery 2/29/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 5/8/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 8/24/2012 Breast Hormonal Therapy 10/16/2012 Arimidex (anastrozole)
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Nov 28, 2012 02:50PM skimommi wrote:

Hi Ladies! I have tried reading through many posts, but there is so much information going on it is hard to keep track. So, I apologize if my questions are repetitive to what you have already responded to. I hadn't considered the cold caps until reading through some of the posts here.  I would really like to hear a recap and tips from those of you that have done it. Do you feel it was worthwhile? Did it take a lot of effort and commitment? Or, was it a simple process? Anyone use the cold caps but still experience full hair loss? Please also let me know what cocktail you are on, as I know that plays a big part into it all.  :)

Thanks, and many good thoughts for you all!

"If God brings you to it, He will bring you through it." Dx 9/2012, IDC, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2- Surgery 10/12/2012 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 1/3/2013 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Nov 28, 2012 04:47PM makingway wrote:

I've met some very influential people through helping with the caps. In the beginning most are extremely excited with saving their hair. But, is often the case after chemotherapy is complete, they are just glad it is over and done with... They don't want to think about cold caps anymore. Ultimately poor marketing by the Penguin Co. itself is to blame. I met with a woman the other night to give instruction to her and the 3 helpers who were going to be changing her caps. We all sat to watch the Penguin video on how to fit the cap, which is now 3 years old. Through years of experience I have developed a better method of fitting the caps, which I shared with them afterward. I'm not sure why, but the caps that were sent to this woman were white, they seemed smaller and contained less gel. I hope they are as effective as the ones that have been in production for the last few years.

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-
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Nov 28, 2012 07:51PM ndmk wrote:

makingway- i agree that the headbands are very necessary.  I am just so bummed that none were available when I started chemo.  I'm hoping they can up the production very soon so that more of us can use it!  

Surgery 8/30/2012 Lumpectomy: Left Chemotherapy 11/20/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx IDC, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR-, HER2- Surgery Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Nov 28, 2012 08:35PM makingway wrote:

ndmk-Have you called and asked for bands? I was told they can produce many in 1 day. They should never get to the point that they run out...

LadyGrey-It was fun seeing the staff do a turn around. But, it was also sad because what they wanted was to keep the caps a secret.

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-
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Nov 28, 2012 10:39PM - edited Nov 28, 2012 10:55PM by Hortense

skimommi - I just used them this summer and they were absolutely worthwhile. I highly recommend them. I had four treatments of Taxotere Cytoxan three weeks apart and I kept most of my hair even though I shed a lot. Being able to keep my hair has made dealing with breast cancer, chemo and radiation so much easier. When I see myself in a mirror I see myself, not some sick bald version of me. As a result, I have never felt the need to cry or gotten depressed. Believe me, that's powerful medicine.

From everything I have read on here, and heard at my breast center in NYC which has had upward of forty women use them, T/C users have very good success keeping their hair if they use Cold Caps and follow the protocol strictly. From what I have heard, ACT users may not be as successful, but there have been women on here who have used them with ACT and been able to keep their hair.

I was fortunate to be able to hire an experienced helper recommended by my breast center and she made the process easy for me as she did everything and knew what needed to be done. Others have had their husbands, friends or relatives help them and it seemed to work well. My husband just didn't want to do it. He prefered an expert handle it instead.

A few women have arranged to help each other, first one goes through chemo then the other, which I think is lovely. Some very organized people practice ahead of time so that they and their helpers know what needs to be done and so they can learn how to fit and change the caps efficiently to be sure the timing works smoothly.

Cold Cap therapy requires gathering the right equiptment (Penguin gives an exact list once the rental is arranged) and finding someone or two people willing to do the job carefully each treatment day. They must follow the timing and temerature protocol exactly in order for it to be successful. Basically the patient's scalp gets cooled for 50 minutes before the chemo is started, and continues to be cooled all through whatever chemos may be given, and for four hours afterwards. It's a full day's work. But, it is so very worth it for the patient if she can keep her hair!

The caps are extremely cold and not fun to wear, but those of us who have used them were willing to put up with the discomfort on the days of our treatments in order to keep our hair. We dressed warmly in zillions of layers and used an electric blanket to wrap up into to keep ourselves warm. Some of us also iced our finger nails and toes nails during the Taxotere infusion to protect them from damage - something I also highly recommend.  

Cold Cap user - kept my hair Dx 1/24/2012, IDC, 1cm, Stage II, Grade 2, 2/2 nodes, ER+/PR+, HER2- Surgery 2/29/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 5/8/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 8/24/2012 Breast Hormonal Therapy 10/16/2012 Arimidex (anastrozole)
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Nov 29, 2012 02:40AM ndmk wrote:

makingway- It has been 2 weeks since I first ask Geralyn (I have already asked her an additional 2x in the interim) about the straps and she says its still being produced.  Such a bummer that I couldn't get those straps for my first chemo last week.  I'll still continue to hound her for it. I don't know if there's a production issue?

Surgery 8/30/2012 Lumpectomy: Left Chemotherapy 11/20/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx IDC, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR-, HER2- Surgery Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement

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