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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 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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Oct 25, 2019 09:41PM SarahSmilesatMe wrote:

I’m having a moment (hour, day?) of anxiety. I just completed my 2nd treatment (4 total) of Taxotere and Cytoxan. Day 23 to be exact; and even though I’m using the Penguin cold caps, my hair is shedding like crazy! I have really thick hair, but would estimate I’ve lost about 40% so far and I have 2 more treatments. Any advice, experience, and encouragement would be welcome! Thank you so much

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Oct 26, 2019 06:07AM kaylie57410 wrote:

hi to you-I also used Penguin thru 4 tc txs and saved 80% thru the infusions and continued to shed for 5 more months losing other 5% or so, so ended up with 75% left- no one could tell at all and made my emotional well being much stronger .

thinking back -I think what helped was my partner- my daughter who championed me not to quit when I reach the 6/7 hours of capping--the caps have to be really ,really tight against your head-especially the crown-i would always use the straps and pushed down on the crown part to maintain ongoing contact with my crown- I didnt realize how much I lost along my side hairlines and over ears till it started growing back but never had any bald spots anywhere -lost my eyelashes but not my eyebrows

everyone has different results-remember-without the caps you well might be bald at this point-so do persist in the remaining 2 infusions--dont giv up!!! continuing will also help the lost hair start to regrow sooner..you will get thru this- you will--you are halfway there--hang in there -you will be so glad you did--hugs,Kaylie{Candace}

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Oct 26, 2019 06:53AM GoKale4320 wrote:

SarahSmiles - I used cold caps with 4 rounds of TC. I’m chiming in to say that my hair was thin to begin with and I lost way more than half before it was all done. At the exact same point where you are currently, I experienced a ton of shedding and wondered if it was worth cold capping anymore. I continued though.

After the 3rd and 4th rounds I shed more but not the great quantity of the 2nd round. The surprise was that I continued to shed a little bit a couple months after the 4th round.

But the important thing was that I still had hair all over my head (very thin though). It started to regrow before the shedding was done. I had a good head of hair within 3 months PFC which continued to improve each month.

Wishing you the best

Dx: January 2017, IDC, Stage IIa, 1/23 nodes, Dx 1/2017, IDC, Right, <1cm, Stage IIA, Grade 2, 1/23 nodes, ER+/PR+, HER2-
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Oct 26, 2019 09:28AM HikingLady wrote:

SarahSmilesatMe I'm chiming in with more support. EXACTLY like you and these other experiences above my post, I also thought WHAT'S THE POINT when a lot of shedding happened after #2. Yes, keep everything super tight---I used plenty of conditioner next to my scalp to make the contact of the cold cap really good, and I slicked down my hair.

Losing a lot of hair is still not being bald. People couldn't tell that I had thin hair. I babied my hair completely---I hardly ever washed it (1 time, 3 days after treatment, to wash out any excreted chemo residue), and otherwise, just completely treated it gently. I wore a snood in bed, and used a hair band or scarf a lot to style so the slightly-greasy-not-washed hair didn't look so weird, and just made that my look during those months.

There's a super small percentage of people who never re-grow their hair after TC---I think it's Taxotere that's to blame. That's why I persevered, thinking that whatever hair I could keep, I'd be ahead in case that were to happen. My hair DID regrow, just fine, when I was all done with chemo. As thick as ever.

My eyelashes and eyebrows did fall out, a few weeks after final, #4 treatment. For about a month, I needed to use an eyebrow pencil to fill in. 2 months after chemo ended, new hair was growing everywhere on my head. Eyebrows and eyelashes were normal looking in 2 months, and pretty good about 4-6 weeks after they shed.

I'm a year past that now, and sending you tons of support and warm wishes. Hang in there.

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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Oct 26, 2019 07:52PM Adhoney wrote:

sarahsmilesatme:

I used Chemo Cold Caps during my 6 rounds of TCHP chemo. I started out with a head full of long, thick hair. My heaviest shedding was after round 2 as well. I shed a LOT! It’s hard to not focus on the hair you’re losing, but, if you think about how much hair you still have on your head! Even though I shed a lot, only I could tell. I ended up with a thin spot on my crown b/c on that first chemo I don’t think I got the caps tight enough. I started applying steady pressure on my crown for each new cap—because they were so frozen I couldn’t get them tight enough to my scalp.

You will keep your hair. A majority of it. Focus on the hair still on your head. You can do this! You’re halfway there!!! Hang in there.....

Angie


Dx’d w/ IDC at age 46. Completed 6 rounds of TCHP prior to surgery. Saved my hair by cold capping! R mastectomy w/DIEPflap reconstruction on July 25, 2019. Began Kadcyla on 8/12/2019 for 14 doses every 3 wks. Dx 2/22/2019, IDC: Mucinous, Right, 2cm, Stage IA, Grade 2, ER+/PR+, HER2+ (IHC) Dx 3/25/2019, DCIS, Right, <1cm, Stage 0, ER+/PR+ Targeted Therapy 8/11/2019 Kadcyla (T-DM1, ado-trastuzumab) Hormonal Therapy 9/2/2019 Arimidex (anastrozole) Surgery 11/13/2019 Reconstruction (right): Fat grafting, Nipple reconstruction
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Oct 27, 2019 10:09AM SarahSmilesatMe wrote:

Thanks for the encouragement.... i needed it! I feel I’m vested in capping now, so I guess I’ll push on with the Penguin caps! This is probably one of those ridiculous questions, but would a couple of you chime in with suggestions for how you washed your hair. I read to avoid shower head sprays and consider washing it in the sink. Did you just use a slow drip from the faucet, fill a cup with water and pour over it, etc? Thanks again for your tips and tricks!

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Oct 27, 2019 11:36AM ik0106 wrote:

I am using Penguin also. I was told to first dilute my shampoo with water and pour it over my head. I do this in the shower and then I use pitchers of water and use them to rinse out the shampoo.(I don't let my head go under the shower head) When the shampoo is rinsed out I put conditioner on the bottom part of my hair and rinse with the pitchers of water. I just did my 5/12 of weekly Taxol treatments and have barely shed any hair.


Dx 5/24/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (FISH) Surgery 7/11/2019 Mastectomy: Left, Right Surgery 8/7/2019 Lumpectomy: Left Targeted Therapy 9/26/2019 Herceptin (trastuzumab) Chemotherapy 9/26/2019 Taxol (paclitaxel)
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Oct 27, 2019 02:40PM - edited Oct 27, 2019 02:41PM by kaylie57410

This Post was deleted by kaylie57410.
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Oct 27, 2019 07:36PM seawell wrote:

I used DigniCap for 4 rounds of TC. I was fortunate to start off with tons of hair...I've been told that I have 3 times the amount of hair of the average person. I shed throughout my chemo....I'd say at the final chemo I had lost about 40-50% of my hair. The problem now is that I'm 8 weeks post final chemo and I'm still shedding quite a bit especially when I wash my hair once a week. I'm still being gentle with my hair as I was during cold capping. Not sure when the shedding will stop....I can't afford to lose much more hair. It thinned evenly ...I have no bald patches. But I really didn't think it would keep falling out this far after the final dose. Now it also looks like my eyelashes are falling out but eyebrows are sprouting little hairs.

Dx 3/2019, ILC, Right, 1cm, Stage IA, 0/2 nodes, ER+, HER2-
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Oct 28, 2019 05:27AM kaylie57410 wrote:

morning--I also had 4 rounds tc ,but used Penguin--kept 80% thru chemo and lost another 5% from onoing shedding over the ensuing 5 months before finally stopping-was not expecting to shed for so long--but remember-you are shedding out old hairs which we do normally -just not as much as post chemo---but--new hairs are growing back in even as the old are falling out, so take heart--is all part of this journey--you are on the upswing now--congrats on that-am 2 years post and my hair has been back to normal for well over a year now-yours will too--K

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Nov 15, 2019 07:15AM kaylie57410 wrote:

Morning to all..I still have the laser digital infrared thermometer I used to track the temperature of the Penguin Caps I used thru 4 rounds of chemo-very important to have caps in correct range--I have no further use of it and would like to send to one of you who could use it- it runs on a 9 volt battery which I would include . I live in Vermont-If anyone would like it- do private message me with your name and address and I will sent it out---thanks,Kaylie-Candace

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Nov 17, 2019 10:03PM vmb wrote:

Hi everyone,

I thought, despite what I've been told, that I would be able to save my hair cold capping while going through dd AC/T. I know, I know. It doesn't work well. BUT, I've seen a few people have great success! Why not me?

My center uses the Dignicap Deltawhich is supposed to be better than the older version. Well, I'm on day 25 and the past 4 days I probably shed about 50-65% of my long, dark thick hair. I can't stop crying. I look in the mirror and I don't recognize myself. I see some really bad snapchat filter. I've always been known for my hair. It's been my thing, my security blanket, my biggest source of self-confidence and now it is just being gripped in my hands as I sob. So, my questions are:

- Is it normal to shed THIS much day 21-25?

- Can I expect it to taper off? I had thick hair so I presume that there was a lot of insulation and my scalp wasn't getting cold enough.

- Or, do I give up and stop torturing myself?

Help!
xx

Dx 8/7/2019, DCIS/IDC, Left, 5cm, Stage IIIA, Grade 1, 4/4 nodes, ER+/PR+, HER2- Surgery 9/18/2019 Mastectomy: Left; Reconstruction (right) Chemotherapy 10/24/2019 AC + T (Taxol) Radiation Therapy
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Nov 18, 2019 12:58AM kdrake1007 wrote:

@vmb,

I was you in June and July 2018. 56, thick, long auburn hair, never dyed. I also used the DigniCap system. By the time I finished all chemo in October, I’d lost probably 80% of my hair. I stuck with cold capping throughout and I can honestly say that I’m so glad I did! You can look back on this thread and see the collage of my photos to see how bad it was. But, I believe cold capping really helped protect my hair follicles so that when everything started growing back in, which was while I was still receiving Taxol, my hair was real hair, not the fluffy bird feather hair that often first comes in. I did start wearing my hair in very loose braids the last 1.5 - 2 months. I had a bad habit of running my hands through my hair to remove the stragglers that were driving me crazy, and I think the braids helped. I shed throughout, but the heaviest started about day 21 and that lasted for a couple of weeks.

My daughter got married this past June. The wedding was one of my main motivations for cold capping. So 8 months PFC in this photo and I’ve already cut my hair twice. It’s healthy and growing well!



Only you can decide if you want to continue to cold cap. For me, it wasn’t pleasant but I would do it again because I think it was worth it.

Feel free to reach out if you have questions. Good luck with whatever you decide!

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 18, 2019 09:55AM vmb wrote:

Thank you so much for your reply Kim. You are just beautiful.

Did you have a significant amount of shedding after the second round as well? I'm guessing I've already lost 60% and while the matting has tamed down a bit, every time I touch it, more and more hair comes out.

How often do you brush it? How did you wear your hair during treatment? I currently have it in two braids.

Thank you again! xx

Dx 8/7/2019, DCIS/IDC, Left, 5cm, Stage IIIA, Grade 1, 4/4 nodes, ER+/PR+, HER2- Surgery 9/18/2019 Mastectomy: Left; Reconstruction (right) Chemotherapy 10/24/2019 AC + T (Taxol) Radiation Therapy
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Nov 18, 2019 12:44PM kdrake1007 wrote:

@vmb,

You're welcome! I would say that I never had another "huge" shed like the first starting at day 21. But I did shed consistently throughout. I never used a brush, only a wide tooth comb and only once a day, usually in the morning. I think wearing the braids helped a lot, especially with the matting, and wish I had started much earlier. I wore the braids 24/7 except on infusion days. I'd unbraid, wet down my scalp for treatment. Then I'd let it dry after treatment and then rebraid. One other thing that I think helped was sleeping with a satin pillow case.

I have a friend who also did the same AC+T treatment who has hair down to her waist, long and blond. She did DigniCap and lost only about 20%. She was a real success! My sister is a hair dresser and said that the hair matrix for different color hair is very different and that may affect why some are very successful and others not so much.

For photo evidence, here's the collage. June 17 was day 18, just before the big shed. Sept 16 was the week after Taxol #8. You can see in the Oct 20 photo I already had some regrowth showing, that was just before my last Tx. I chose to cut off the length on Dec 13 because the regrowth was looking really weird with the long hair left.

Good luck with the rest of your treatment! I'm not on the boards daily anymore, but try to check in at least once a week.

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 18, 2019 07:57PM OnTarget wrote:

I used Penguin for 4 rounds of TC, and I kept most of my hair. It is thinner up front and I got some bald areas near both temples, but it isn't obvious if you don't know me.

I started with thick, long hair. I got it cut short and thinned after my first round. I felt like I could get it colder with shorter hair.

I shed a lot, but I look pretty good. I'm a little over a month out, and a stranger complimented me on my hair style over the weekend, so it can't look too weird.

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/13/2019 Zoladex (goserelin) Chemotherapy 8/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/5/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Nov 24, 2019 10:12PM seawell wrote:

kdrake...your hair looks fabulous at your daughters wedding. Better than ever! The shorter tousled look is very becoming on you. Thanks for sharing your experience as it gives us all hope.💕

Dx 3/2019, ILC, Right, 1cm, Stage IA, 0/2 nodes, ER+, HER2-

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