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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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Posts 21391 - 21404 (21,404 total)

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Jun 30, 2021 05:37AM gamma2192 wrote:

Thanks Jenny and Morrigan for sharing our experiences.

Dx 2/15/2021, ILC/IDC, Right, 6cm+, Stage IV, metastasized to bone/liver, Grade 3, ER-/PR-, HER2+ (FISH) Radiation Therapy
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Jul 19, 2021 12:41PM swimgal wrote:

Hi, all. I will be having my first infusion Thursday and will be using the Dignicap. Just wondered if anyone has used any of the hair products from Chemo Hair and Skin? If so, any reviews? I know they're pricey, but wondered if it's worth it. Thanks!


Swimgal



Dx 6/10/2021, IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (FISH)
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Jul 19, 2021 01:20PM claire1973 wrote:

Hi Swimgal,

I used a few of the products at the start and then settled on only using the Scalp Cooling Booster Part 1 (not part 2) on chemo days. It's a powder that you dissolve into water and they spray it on your roots before putting on the cap. I kept most of my head hair. There is also a cold cap forum on this site. yOu might have found it. I will try to post a link.

Dx 12/15/2020, IDC, Right, 1cm, Stage IA, Grade 2, ER+/PR-, HER2+ Targeted Therapy 1/7/2021 Herceptin (trastuzumab) Chemotherapy 1/7/2021 Taxol (paclitaxel) Surgery 4/21/2021 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jul 19, 2021 01:21PM claire1973 wrote:

Hahaha

ignore me. Sorry swimgal--I know we have talked on the Taxol forum and I thought that's where we were talking! funny. I still have chemo brain by the way.

Claire


Dx 12/15/2020, IDC, Right, 1cm, Stage IA, Grade 2, ER+/PR-, HER2+ Targeted Therapy 1/7/2021 Herceptin (trastuzumab) Chemotherapy 1/7/2021 Taxol (paclitaxel) Surgery 4/21/2021 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jul 19, 2021 01:55PM swimgal wrote:

Claire1973, LOL. You made me double check where I posted Happy. Thanks for your quick response.

btw, there are days I have chemo brain and I haven't even started my infusions yet!


Blessings

Dx 6/10/2021, IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (FISH)
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Jul 20, 2021 10:43AM SWLovesHerDog wrote:

I am at the point that I need to start making a decision if I'm going to do Cold Capping during my chemo or wear a wig. I'd really like to know if there are others out that have the same diagnosis and chose to do Cold Capping? Also what their experiences have been?

HER-2 positive left breast cancer. It is only 1.5 cm, with no lymph nodes involved. I will be doing limited chemotherapy. 12 weeks of weekly paclitaxel, with trastuzumab given every 3 weeks to complete 1 year of therapy.

I had the following surgeries

Mastectomy and EXPANDER RECONSTRUCTION - 6/24/2021) left breast, estrogen receptor-positive

BIOPSY SENTINEL LYMPH NODE - 6/24/2021)

Performed for Malignant neoplasm of upper-outer quadrant of left breast - estrogen receptor-positive

LEFT NIPPLE SPARING MASTECTOMY - 6/24/2021

Performed for Malignant neoplasm of upper-outer quadrant of left breast - estrogen receptor-positive

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Jul 20, 2021 11:26AM claire1973 wrote:

hi, you have a very similar diagnosis to me. I had HER2 positive breast cancer and also did 12 weekly doses of Taxol with Kanjinti every three weeks (1.5 cm tumor on the right and nothing in lymph nodes). I had chemo before surgery. I did Dignicap cold capping and I’m glad I did it.

I kept my hair which was the main reason I wanted to do the cold cqppong but I also wanted my kids to see me as mom when they looked at me and not sick mom. BUT what I realized after getting started is that I live in a small town even though it’s a major metropolitan city, and I ran into acquaintances on the street regularly throughout my treatment, and I did not have to explain to them the whole story was what I’d been going through….my friends knew, but…..you know what I mean

my last chemo was March 25. I lost ALL of my hair except what was on my head (which I kept about 75 percent). Everything grew back in the first 6 weeks (eye brows, etc). The regrow on my head is about 1/2 inch long.

Hope that helps and hope it doesn’t read as insensitive or vain….I’m neither of those things!

Xoxo

Dx 12/15/2020, IDC, Right, 1cm, Stage IA, Grade 2, ER+/PR-, HER2+ Targeted Therapy 1/7/2021 Herceptin (trastuzumab) Chemotherapy 1/7/2021 Taxol (paclitaxel) Surgery 4/21/2021 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jul 20, 2021 06:07PM swimgal wrote:

Claire1973, you do not sound vain or insensitive at all. That is one of the reasons I am doing cold capping - to have control over my privacy. I've told my family and the friends I want to tell. I don't want to deal with telling everyone I work with or acquaintances. Yes, of course I want to keep all the hair I can to keep as much of me the same as possible and I'm sure there's some amount of ego involved, but I think that's normal. But whatever happens I know God's got this and He's got me and that will get me through.

Blessings


Dx 6/10/2021, IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (FISH)
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Jul 22, 2021 02:25AM - edited Jul 22, 2021 02:46AM by Moderators

This Post was deleted by Moderators.
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Jul 22, 2021 06:19PM swimgal wrote:

Good evening. Just wanted to share my experiences with the Dignicap after my first infusion this morning. I will say that the first five minutes of the cap were hard to tolerate, but after that for the duration of the cold capping it was totally tolerable for me. The chair I was in was heated, which was a very pleasant surprise, and I brought an electric blanket with me which I used throughout my time there. I was also doing cold gloves and socks during the Taxol. I'm hoping the discomfort will be for that short of a duration for future infusions. Also for those who are wondering, as I was before today, it is very easy to use the washroom with the cold cap. The nurse paused the machine and I unhooked the hoses and went to the washroom with the rolling rack that holds the infusion bags. No problem at all.

As an aside, everything else went very smoothly. I can't say enough about the staff at my facility. They were awesome! Such a blessing!!

One down, 11 to go!

Dx 6/10/2021, IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (FISH)
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Jul 23, 2021 11:38AM claire1973 wrote:

Congrats Swimgal for getting through it and having a great attitude about it. Yes--the cold cap was tolerable for me AFTER the initial chill down. The one area that was problematic for me, but I got through it is my ears would gte really cold. They do have these ear muff things to put over your ears...I used those and they helped. I just have really sensitive ears. AND i got through it and my ears are fine!

Dx 12/15/2020, IDC, Right, 1cm, Stage IA, Grade 2, ER+/PR-, HER2+ Targeted Therapy 1/7/2021 Herceptin (trastuzumab) Chemotherapy 1/7/2021 Taxol (paclitaxel) Surgery 4/21/2021 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jul 23, 2021 01:44PM santabarbarian wrote:

For people lacking access to cold caps:

I did a homegrown kind of cold capping. I bought 4 of these freeze-able migraine caps from amazon, used combo ice and dry ice, and rotated them every 20 or so minutes during the infusion, starting on chemo #2 (of 6). I did lose most of my hair due to chemo #1 having no protection (too rushed!). But I did the cold anyhow starting with #2, because Taxotere CAN result in baldness! I thought it was worth it to protect my hair follicles so I would have less chance of that SE.

It worked very well! I wish I would have done it from #1 and not lost so much hair. But do I know it worked because my hair regrew *before* my final chemo. And it all came back, and, weirdly, it came back thicker than before.

So the cheap home-made cold caps are worth a try if real cold caps are not feasable. They re about $25 each (4) and the dry ice was another ~$25 per week. Total $250

pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/13/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/11/2019 Whole-breast: Breast, Lymph nodes
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Jul 23, 2021 02:15PM claire1973 wrote:

santabarbarian-that is amazing and resourceful…I’m very impressed by this.

Yes- I also heard freezing the hair follicle is good for longer term health.

My hair is coming in thicker than it was and I also don’t shed NEARLY as much hair in the shower as I shed before chemo. I’m assuming it will go back to my typical shedding eventually but maybe not!

Dx 12/15/2020, IDC, Right, 1cm, Stage IA, Grade 2, ER+/PR-, HER2+ Targeted Therapy 1/7/2021 Herceptin (trastuzumab) Chemotherapy 1/7/2021 Taxol (paclitaxel) Surgery 4/21/2021 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jul 24, 2021 09:15AM swimgal wrote:

Claire1973, I brought the clip-on ear muffs with me (another tip learned here), but I didn't need them, as the headband they put on for the cold capping kept my ears comfortable. I will have them with me in the future just in case.

Santabarbarian, that is a great suggestion for people who don't have access to the cold cap!

Dx 6/10/2021, IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (FISH)

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