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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.

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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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Dec 3, 2015 10:40AM LRFTexan wrote:

today marks 9 weeks since I started this journey. It is my last AC treatment before I move on to Weekly taxol.

Here is my bag of hair and I picture from this weekend. Still have 12 Taxol to go but my chemo cold caps worked this far!

Dx 7/2015, IDC, Right, 3cm, Stage IIB, Grade 1, ER+/PR+, HER2- Surgery 8/17/2015 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy AC + T (Taxol)
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Dec 3, 2015 10:42AM dancetrancer wrote:

LRF, looking FAB!

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Dec 3, 2015 04:18PM malonejen wrote:

LRFTexan, you look beautiful. I have my fourth and last AC tomorrow. Please keep your fingers crossed! I've lost a lot more hair than you, but I still have some... about 40-50% of it. I am so happy that it's working out well for you... we all know how hard it is to endure those caps for eight hours...

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Dec 3, 2015 05:24PM Wildflower2015 wrote:

LRF,

You look great!


Cold capping saved my hair during chemo :-) Dx 4/2015, IDC, Right, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR-, HER2- Surgery 4/23/2015 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 6/18/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 10/19/2015
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Dec 3, 2015 05:28PM Angiel wrote:

LRFTexan - you look great! What chemo? You wouldn't even know unless you told me!

Good luck malonejen!! Sending you positive hair thoughts for tomorrow and throughout the rest of treatment. 40-50% of hair is still hair to be happy about!!

Both of you ladies are doing the same protocol I did & it's great to see you having success too. There seems to be less success stories out there with the AC Taxol combo. I guess with 16 treatments, there is a lot of room for error in everything that wearing the cap entails, in addition to how hard the AC portion is on hair. Keep it up ladies! You are almost there!

Dx 1/7/2015, IDC, 4cm, Stage IIIA, Grade 2, 3/14 nodes, ER+/PR+, HER2- Chemotherapy 2/9/2015 AC + T (Taxol) Chemotherapy 4/8/2015 Taxol (paclitaxel)
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Dec 3, 2015 09:47PM - edited Dec 3, 2015 09:48PM by Sara208

wow, thank you so much for the great advice, pch, I really appreciate it! I'm kind of terrified to wash more often, but if you think that's better I'll try it. I ordered a Tangle Teeezer before I started chemo, but it took out so much more hair than the wide-toothed comb (pre-chemo)that I went back to the comb. I'm getting a couple of inches trimmed off tomorrow to try to make this easier. I will definitely try the corn starch idea, that is genius! Thanks for the support and advice!

Dx 7/2015, DCIS/IDC: Medullary, Left, 1cm, Stage IIIA, Grade 1, 5/12 nodes, ER+/PR+, HER2- Surgery 9/5/2015 Lymph node removal: Sentinel Surgery 9/15/2015 Lymph node removal: Left; Mastectomy: Left; Reconstruction (left): Tissue expander placement Chemotherapy 11/10/2015 TAC Radiation Therapy 2/2/2016 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 4/1/2016 Arimidex (anastrozole) Surgery 9/5/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 2/27/2017 Reconstruction (right) Surgery 6/2/2017 Reconstruction (left): Fat grafting; Reconstruction (right) Surgery 7/3/2017 Reconstruction (left) Surgery 8/2/2017 Reconstruction (left)
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Dec 3, 2015 10:53PM milkchess wrote:

LRF- Wow you look great!!

Dx 8/31/2015, IDC, 1cm, Grade 2, 0/3 nodes, ER+/PR-, HER2- Chemotherapy 11/13/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery Mastectomy: Right
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Dec 4, 2015 07:17AM dancetrancer wrote:

Just wanted to say that I tried a wet brush for the first time (I am 3.5 years out from chemo), and I LOVE it. I wish I'd had that while cold capping. Just an FYI for anyone who is having trouble with tangles.

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Dec 4, 2015 09:14AM LRFTexan wrote:

thank you so much ladies, it's allowed me to keep my sense of privacy. So worth it. Still a long way to go and debating the timing still on the Taxol. I feel so blessed.


Malonejen-extra prayers for you today. On my AC regimen I did 1 hour pre meds, 1hour chemo and then 4 hours post for 6 hours. The third chemo I quit early it was tough on me at about 5:40 but otherwise 6 total

Dx 7/2015, IDC, Right, 3cm, Stage IIB, Grade 1, ER+/PR+, HER2- Surgery 8/17/2015 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy AC + T (Taxol)
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Dec 4, 2015 05:44PM Jbandkb1 wrote:

LRFTexan you look great!!

So bottom lashes pretty much gone. Top not much better. Eyebrows barely there. 4 weeks PFC & still waiting for my lashes & eyebrows to grow back. Ug

Dx 6/10/2015, IDC, Left, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 6/23/2015 Lumpectomy: Left Chemotherapy 7/26/2015 AC + T (Taxol) Hormonal Therapy 11/16/2015 Arimidex (anastrozole) Surgery 11/22/2015 Prophylactic ovary removal
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Dec 4, 2015 09:44PM nancy3434 wrote:

you look beautiful!! I'm trying to decide to order the penguin cold caps. I just had a double mastectomy with one noid coming back with cancer. So I start Chemo AC for for cycles every two weeks. After that I start Toxal for 12 weeks every week. I keep hearing that the cold caps don't work very well with the AC, but looking at you I think I'm going to do it!! Thanks so much for sharing!

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Dec 4, 2015 10:25PM jodes001 wrote:

I went to my "chemo Education" appt today. I will be the first person to use cold caps at the breast cancer center I'm going to. I was surprised!! It's kind of cool to be bringing this amazing innovation somewhere new! :)

I bought some leather work gloves for handling dry ice.

Have 2 coolers for caps and dry ice.

Neck pillow

heated blanket

Almost there....Have a super weekend everyone!!! Happy


Dx 9/2015, IDC, Right, 1cm, Grade 2, 0/2 nodes, ER+/PR+, HER2+ Surgery 10/6/2015 Lumpectomy: Right Chemotherapy 12/6/2015 Taxol (paclitaxel) Targeted Therapy 12/7/2015 Herceptin (trastuzumab) Radiation Therapy 3/13/2016 Whole-breast: Breast
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Dec 4, 2015 10:55PM tshire wrote:

finished chemo today with almost all of my hair!!



Tiffany, dx age 31. Neg for all breast cancer genes tested. Oncotype 20. Ki67 34%. Saved my hair with Penguin Cold Caps! Dx 6/12/2015, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 7/13/2015 Lumpectomy: Right Dx 7/16/2015, DCIS, Right, Stage 0, Grade 2 Surgery 7/26/2015 Lumpectomy: Right Chemotherapy 9/30/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 12/30/2015 Whole-breast: Breast Hormonal Therapy 3/10/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 4, 2015 11:10PM aj93 wrote:

Congratulations, tshire! It's all behind you now. Woohoo! Bright skies ahead.

Dx 6/5/2015, DCIS/IDC, Left, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 7/10/2015 Mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right) Chemotherapy 9/10/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Dec 5, 2015 12:58AM Moderators wrote:

Nancy3434-

Welcome to BCO! You've come to the right place for support as you being your treatment. Hopefully some of the stories hear help you make your decisions on cold caps!

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Dec 5, 2015 02:02AM Aussie-girl75 wrote:

Congrats TShire it's like a weight has been lifted off you when you finish chemo.

Dx 3/23/2015, DCIS, Left, Stage 0, Grade 1, 1/14 nodes, ER+/PR+, HER2- Surgery 4/14/2015 Lumpectomy; Lymph node removal: Underarm/Axillary Radiation Therapy 8/26/2015 Hormonal Therapy Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Dec 5, 2015 02:45AM Suladog wrote:

Tshire,

Looking good!!!! Congrats on being done!!

Dx 6/6/1990, IDC, Left, <1cm, Stage IA, Grade 3, 0/18 nodes, ER-/PR-, HER2- Surgery 7/20/1990 Mastectomy: Left Chemotherapy 8/19/1990 CMF Dx 10/5/2014, IDC, Right, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (FISH) Surgery 10/28/2014 Mastectomy: Right Chemotherapy 1/28/2015 Taxol (paclitaxel) Targeted Therapy 1/29/2015 Herceptin (trastuzumab) Hormonal Therapy 5/30/2015 Arimidex (anastrozole)
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Dec 5, 2015 08:02AM jc254 wrote:

Tshire, so happy you're finished chemo, and with your hair! Now you can concentrate on the fun stuff- your wedding.

successful cold cap user : ) Dx 9/24/2012, IDC, ER+/PR-, HER2- Surgery 2/14/2013 Lumpectomy: Right Chemotherapy 4/18/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 7/18/2013 Femara (letrozole) Radiation Therapy 8/26/2013
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Dec 5, 2015 10:27AM Wildflower2015 wrote:

Jodes, I was the first to cold cap at my facility also! The treatment center was very supportive and watched my progress with much interest. I'm still surprised at how many women have never heard of capping. That is just not fair!

Tshire, congrats on finishing, girl! What an immense relief it must be! You got sparkles too! Did you saved one or two of them for good luck?

Cold capping saved my hair during chemo :-) Dx 4/2015, IDC, Right, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR-, HER2- Surgery 4/23/2015 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 6/18/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 10/19/2015
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Dec 5, 2015 10:29AM Lemint wrote:

Congratulations Tshire I'm so happy for you!!!!!

Dx 7/21/2015, DCIS, Left, 1cm, Stage 0, Grade 2, ER+/PR- Dx 8/18/2015, IDC: Mucinous, Left, Stage IIB, Grade 1, 1/2 nodes, ER+/PR-, HER2+ Chemotherapy 12/3/2015 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 12/3/2015 Perjeta (pertuzumab) Targeted Therapy 12/3/2015 Herceptin (trastuzumab) Radiation Therapy 4/11/2016
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Dec 5, 2015 12:40PM jodes001 wrote:

And I was excited to share information with everyone at the cancer center, but the nurse said not a good idea. Because of that slllimmm chance that someone has cancer growing on their scalp, or near to it....the chemo wouldnt get to it.

I will still share info if someone asks. ;)

Dx 9/2015, IDC, Right, 1cm, Grade 2, 0/2 nodes, ER+/PR+, HER2+ Surgery 10/6/2015 Lumpectomy: Right Chemotherapy 12/6/2015 Taxol (paclitaxel) Targeted Therapy 12/7/2015 Herceptin (trastuzumab) Radiation Therapy 3/13/2016 Whole-breast: Breast
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Dec 5, 2015 02:44PM dancetrancer wrote:

jodes - totally up to you to decide, not what the nurse says. As long as patients are fully informed of the very remote risk...what is the issue? I don't get it. People can't make an informed decision if they have no idea of the options that exist.

The only thing I worried about with telling others is that they may not be able to afford the caps, and it would cause them emotional distress.

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Dec 5, 2015 02:47PM Leslienva wrote:

Hopeismyname, get the Toppik to cover your bald spots. It works great!

Saved my hair with Penguin Cold Caps! Dx 8/1/2014, IDC, 3cm, Stage IIA, Grade 2, 0/0 nodes, ER+/PR-, HER2- Surgery 9/17/2014 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 11/3/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 2/12/2015 Aromasin (exemestane)
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Dec 5, 2015 11:32PM tshire wrote:

So now that I'm done, when can I start washing my hair more?? I MISS having clean hair! And I MISS coloring it!

Tiffany, dx age 31. Neg for all breast cancer genes tested. Oncotype 20. Ki67 34%. Saved my hair with Penguin Cold Caps! Dx 6/12/2015, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 7/13/2015 Lumpectomy: Right Dx 7/16/2015, DCIS, Right, Stage 0, Grade 2 Surgery 7/26/2015 Lumpectomy: Right Chemotherapy 9/30/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 12/30/2015 Whole-breast: Breast Hormonal Therapy 3/10/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 6, 2015 04:15AM Aussie-girl75 wrote:

Tshire I would wait and see how you go with post chemo shedding I shed more post chemo than I did during so I still kept to a once a week wash for a while then down to every 4 days, now I'm 18 weeks PFC and washing every 2-3 days. 

Dx 3/23/2015, DCIS, Left, Stage 0, Grade 1, 1/14 nodes, ER+/PR+, HER2- Surgery 4/14/2015 Lumpectomy; Lymph node removal: Underarm/Axillary Radiation Therapy 8/26/2015 Hormonal Therapy Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Dec 6, 2015 07:12AM Suzanne50 wrote:

I am 8+ weeks PFC and still waiting to color. I feel like my hair is just too fragile. I stopped by my colorist and she agreed. She did said she could use a gentler color but we are still going to wait. I think I should be able to get highlights in January. That is what I am hoping for. That would bring me to about 3 months PFC.

My shedding has slowed down considerably. I would say now it is just normal hair in brush. So I am happy about that! Now I just need for it to grow back and fill in. When I put my hair in a pony tail it is like a feather - no joke.

And for the record, I have washed my hair everyday throughout this process. My hair is too thin from the beginning to not wash it. No one told me otherwise and I don't think it made my hair loss any worse.

Good luck ladies! I am so thankful that I was able to save my hair. Losing everything would have taken me a year to get back to where I am now. ...which is shoulder length.

Dx 5/27/2015, IDC, Right, <1cm, Stage IIA, Grade 1, 3/12 nodes, ER+/PR+, HER2- Surgery 6/18/2015 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 7/1/2015 Lymph node removal: Underarm/Axillary; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 8/3/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 11/4/2015 Hormonal Therapy 1/1/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 6, 2015 11:53AM jodes001 wrote:

Tomorrows the day....I'm more worried about cold capping than the actual infusion of numerous drugs to my body!!! So many things I want to get done today, in case I'm not feeling to peppy afterward..............eeek....

Have a great Sunday all!!!Loopy

Dx 9/2015, IDC, Right, 1cm, Grade 2, 0/2 nodes, ER+/PR+, HER2+ Surgery 10/6/2015 Lumpectomy: Right Chemotherapy 12/6/2015 Taxol (paclitaxel) Targeted Therapy 12/7/2015 Herceptin (trastuzumab) Radiation Therapy 3/13/2016 Whole-breast: Breast
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Dec 6, 2015 01:14PM PatinMN wrote:

Jodes, good luck tomorrow! The cold capping was definitely a welcome distraction from all the major drugs being infused. Once the Benadryl wears off, you'll feel quite peppy from the steroids. Don't be alarmed if your face is flushed on Tuesday - that's the steroids

Dx 7/13/2012, IDC, <1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2+ Surgery 8/1/2012 Lumpectomy: Left Targeted Therapy 9/20/2012 Herceptin (trastuzumab) Chemotherapy 9/20/2012 Taxol (paclitaxel) Radiation Therapy 1/8/2013 Breast Hormonal Therapy 4/1/2013
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Dec 6, 2015 01:16PM milkchess wrote:

Good luck, Jodes! It definitely goes by quickly with the cold caps. You can do this!

Dx 8/31/2015, IDC, 1cm, Grade 2, 0/3 nodes, ER+/PR-, HER2- Chemotherapy 11/13/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery Mastectomy: Right
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Dec 6, 2015 09:54PM Aussie-girl75 wrote:

Good luck Jodes!!😀

Dx 3/23/2015, DCIS, Left, Stage 0, Grade 1, 1/14 nodes, ER+/PR+, HER2- Surgery 4/14/2015 Lumpectomy; Lymph node removal: Underarm/Axillary Radiation Therapy 8/26/2015 Hormonal Therapy Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)

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