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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 05:04PM

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 21271 - 21287 (21,287 total)

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Nov 2, 2020 08:06PM kdrake1007 wrote:

Marie,

I had a different chemo cocktail (mine was 4 rounds of Adriamycin & Cytoxan and 12 rounds of Taxol). The 4 rounds of AC were the longest days for me - I started cooling during pre-meds 30 minutes before chemo started and stayed for 2 hours after all chemo infusion finished. Even though you're receiving different drugs, you will probably have to stay 2 hours after both infusions are complete.

As for hair regrowth, I did start seeing regrowth while still getting Taxol. It wasn't the fine baby bird fluff I've heard can regrow at first after chemo, it was normal looking hair. If you look back on this thread, I did a photo collage that shows what my hair looked like throughout treatment. I finished chemo at the end of October in 2018 and cut what was left of my long hair on December 13 to match what had grown.


And after that regrowth was pretty fast. By the time my daughter got married in June 2019, I had had several haircuts to get to this



Kim


Dx 3/15/2018, IDC: Tubular, Right, 1cm, Stage IIIA, Grade 3, 4/21 nodes, ER+/PR+, HER2- (IHC) Surgery 4/16/2018 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 4/26/2018 Lymph node removal: Underarm/Axillary Chemotherapy 5/31/2018 AC + T (Taxol) Radiation Therapy 11/14/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy 1/9/2019 Arimidex (anastrozole) Targeted Therapy 1/31/2019 Verzenio
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Nov 3, 2020 09:05AM HikingLady wrote:

marie914 I think 6-8 weeks after final chemo is when new hair started growing back. Then, by 4-6 months post final chemo, it was very fluffy, as new hair grew in and filled in at my scalp. It took just 3 weeks or so to have eyebrows and eyelashes grow back, and they fell out near the end of my treatment.

My overall success was really good, and I used Paxman, because my chemo infusion clinic had that machinery. No one really knew that I was going through chemo. My hair was thin, but it passed for normal hair.

Dx 3/2003, IDC, Right, <1cm, Stage IA, 0/2 nodes, ER+, HER2- Surgery 4/9/2003 Lumpectomy Radiation Therapy 6/10/2003 3DCRT: Breast Hormonal Therapy 8/8/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/25/2018, IDC, Right, <1cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 5/22/2018 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/25/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 11/7/2018 Arimidex (anastrozole) Surgery 1/2/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Nov 3, 2020 10:54AM marie914 wrote:

Thanks Karen and hiking lady! I love that we have so much experience on this site. It sure does help.

Dx 7/31/2020, DCIS/IDC, Left, 2cm, Stage IIA, Grade 2, 0/8 nodes, ER+/PR+, HER2- (FISH) Surgery 9/13/2020 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Tissue expander placement Hormonal Therapy Femara (letrozole) Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery Reconstruction (left): Silicone implant
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Nov 14, 2020 11:03AM EZhang123 wrote:

Hi all, I’m going to start my chemo session (TCHP)on Monday and will use Penguin Cold Cap. Is any shampoo that you will recommend? I am considering the Honest Company baby shampoo but find some reviews saying people lose their hair from using it so am a bit concerned.

Do you use conditioner also? Also, is hair net recommended for sleeping?

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Nov 14, 2020 11:12AM - edited Nov 14, 2020 11:12AM by morrigan_2575

I used Everyone (Balance) shampoo and conditioner, they're sulfate and parabin free as well as no synthetic fragrance (smells like citrus). I did buy Honest Company Sweet Orange Vanilla Conditioning Spray which was fantastic. I started using it at the end of my treatment because my hair was so dry and brittle, it did wonders.

With DigniCap I was only allowed to wash and condition my hair 1-2 times per week and never condition the morning of treatment.

Best of luck!

Dx 1/20/2020, DCIS/IDC, Right, 4cm, Stage IIA, Grade 2, ER+/PR+, HER2+ (IHC) Chemotherapy 2/5/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/5/2020 Herceptin (trastuzumab) Targeted Therapy 2/5/2020 Perjeta (pertuzumab) Dx 6/19/2020, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 1/3 nodes, ER+/PR+, HER2+ Surgery 6/19/2020 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 7/6/2020 Kadcyla (T-DM1, ado-trastuzumab) Radiation Therapy 8/10/2020 Whole-breast: Breast, Lymph nodes, Chest wall
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Nov 16, 2020 12:07PM EZhang123 wrote:

Thanks Morrigan_2575! I am going to give it a try with the Honest Company then. By the way, I notice you are undergoing TDM-1. Are the side effects for TDM-1 as bad and TC? My oncologist said people loses hair from that too

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Nov 16, 2020 03:11PM morrigan_2575 wrote:

no hair loss from Kadcyla. It's growing pretty well.

I don't have and major SEs on Kadcyla, it's much, much better than TCHP. However, I've seen others struggling with it.

Dx 1/20/2020, DCIS/IDC, Right, 4cm, Stage IIA, Grade 2, ER+/PR+, HER2+ (IHC) Chemotherapy 2/5/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/5/2020 Herceptin (trastuzumab) Targeted Therapy 2/5/2020 Perjeta (pertuzumab) Dx 6/19/2020, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 1/3 nodes, ER+/PR+, HER2+ Surgery 6/19/2020 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 7/6/2020 Kadcyla (T-DM1, ado-trastuzumab) Radiation Therapy 8/10/2020 Whole-breast: Breast, Lymph nodes, Chest wall
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Nov 16, 2020 05:23PM Camama2 wrote:

I used Penguin Cold Caps and finished my last chemo on Sept 16. I know the Hair Care Guide I got from them says not to cut or color your hair for 6 months. I don't mind waiting for color but would really like a cut. Any input would be appreciated!

Also, EZhang123, I used Hairitage "outta my hair" shampoo and "light as a feather" leave-in conditioner. Bought them at Walmart. Don't remember how much but very reasonably priced. Been very happy with them. Both are sulphate and paraben free. Good luck!

Laurie Dx 6/24/2005, IDC, Right, 5cm, Stage IIIB, Grade 3, 2/17 nodes, ER-/PR-, HER2- Surgery 7/21/2005 Lumpectomy; Lymph node removal Dx 4/29/2020, IDC, Right, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (IHC) Surgery 5/13/2020 Mastectomy: Left, Right; Prophylactic mastectomy: Left Chemotherapy 6/3/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Chemotherapy TAC Radiation Therapy
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Nov 17, 2020 07:47AM GoKale4320 wrote:

Camama2 - when I finished chemo, I continued to shed for quite a few weeks after (I can’t remember exactly). So my hair was straggly and uneven. Someone here suggested a tiny butterfly clip to lightly pin it up in the back. Because the very small butterfly clips don’t pull much, it was an easy solution to the uneven hair until I could safely get a hair cut.



Dx: January 2017, IDC, Stage IIa, 1/23 nodes, <1cm Chemo 2/16/17 Cytoxan Taxotere x4 Radiation 6/8/2017, natural alternative to tamoxifen Dx 1/2017, IDC, Right, <1cm, Stage IIA, Grade 2, 1/23 nodes, ER+/PR+, HER2- Hormonal Therapy Evista (raloxifene)
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Nov 17, 2020 09:46AM morrigan_2575 wrote:

i was shedding for a good 4-5 weeks PFC.

I actually just dyed my hair last week, (1 week shy of 6 months). I don't plan on a haircut until Summer (mostly COVID related).

Dx 1/20/2020, DCIS/IDC, Right, 4cm, Stage IIA, Grade 2, ER+/PR+, HER2+ (IHC) Chemotherapy 2/5/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/5/2020 Herceptin (trastuzumab) Targeted Therapy 2/5/2020 Perjeta (pertuzumab) Dx 6/19/2020, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 1/3 nodes, ER+/PR+, HER2+ Surgery 6/19/2020 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 7/6/2020 Kadcyla (T-DM1, ado-trastuzumab) Radiation Therapy 8/10/2020 Whole-breast: Breast, Lymph nodes, Chest wall
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Nov 21, 2020 10:42AM EZhang123 wrote:

Morrigan_2575 - I’m glad to hear the SE for Kadcyla is minimal for you. Hope it will continue to go smoothly throughout the rest of your treatment and you’ll be completely done with all these.

Camama2 - thank you for the information. I will see how Honest company work and hopefully I will still have hair after the 2nd chemo session to try other products if needed.

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Nov 24, 2020 11:11AM marie914 wrote:

So I am using DigniCap and my first infusion was Wednesday November 4. Everything seemed to be going well, but day 20 I started losing hair - shedding. More than just a bit but not big clumps. There are two sections where it is pretty thin. My next infusion was supposed to be tomorrow but it was moved to Friday because of Thanksgiving.

Any experiences with this happening? Like 1) did you not have any shedding? 2) did it stop shedding after the initial week? 3) will it keep shedding but not go completely bald 4) can it still go completely bald?

Just wondering if I will need a wig - right now a ball cap is sufficient. It doesn't look too good because of not washing and those two thin sections.

Thanks!

Dx 7/31/2020, DCIS/IDC, Left, 2cm, Stage IIA, Grade 2, 0/8 nodes, ER+/PR+, HER2- (FISH) Surgery 9/13/2020 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Tissue expander placement Hormonal Therapy Femara (letrozole) Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery Reconstruction (left): Silicone implant
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Nov 24, 2020 11:52AM GoKale4320 wrote:

Marie914 - Shedding after 20 days is a typical experience for cold cappers. The shedding should slow down in another week or so (just in time for your next infusion). It’s normal to shed throughout the whole chemo process and for a few months after the last chemo. But cold capping allows you to keep some hair and start regrowth sooner. I have thin hair so I looked rough during chemo.

Wishing you the best!



Dx: January 2017, IDC, Stage IIa, 1/23 nodes, <1cm Chemo 2/16/17 Cytoxan Taxotere x4 Radiation 6/8/2017, natural alternative to tamoxifen Dx 1/2017, IDC, Right, <1cm, Stage IIA, Grade 2, 1/23 nodes, ER+/PR+, HER2- Hormonal Therapy Evista (raloxifene)
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Nov 24, 2020 12:11PM marie914 wrote:

Thank you GoKale! That is what I needed to hear. I thought so but it is scary when it starts to fall out. I have thin hair so I am looking rough. :)


Dx 7/31/2020, DCIS/IDC, Left, 2cm, Stage IIA, Grade 2, 0/8 nodes, ER+/PR+, HER2- (FISH) Surgery 9/13/2020 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Tissue expander placement Hormonal Therapy Femara (letrozole) Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery Reconstruction (left): Silicone implant
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Nov 24, 2020 03:16PM morrigan_2575 wrote:

i started shedding around day 15-16 the shedding slowed down after cycle 4. I was shedding until maybe 6 weeks after my final Chemo treatment.


Dx 1/20/2020, DCIS/IDC, Right, 4cm, Stage IIA, Grade 2, ER+/PR+, HER2+ (IHC) Chemotherapy 2/5/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/5/2020 Herceptin (trastuzumab) Targeted Therapy 2/5/2020 Perjeta (pertuzumab) Dx 6/19/2020, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 1/3 nodes, ER+/PR+, HER2+ Surgery 6/19/2020 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 7/6/2020 Kadcyla (T-DM1, ado-trastuzumab) Radiation Therapy 8/10/2020 Whole-breast: Breast, Lymph nodes, Chest wall
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Nov 24, 2020 03:20PM Elledwriter wrote:

marie914

I’m very worried, because I’ve had a lot of thinning, and clumps are coming out. I have my next chemo tomorrow. I’ll ask the nurse who does the DigniCap what she thinks. If I keep shedding the way I have been, I may have to Reconsider keeping my hair. :(

Holding out hope for us!

Happy Thanksgiving 🦃 all!

Lesli

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18 hours ago sharon0706 wrote:

Hi Lesli and marie914. I just had my first TC infusion on Tuesday and am reading your posts. I got a pixie cut and am using Paxman cold colds. Hoping for the best but I also bought a bunch of fleece caps. WIshing us all good outcomes.


Sharon

Dx 8/24/2020, ILC, Left, 1cm, Stage IA, Grade 3, 1/1 nodes, ER+/PR+, HER2- Surgery 10/20/2020 Lymph node removal: Left; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement

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