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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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Mar 4, 2021 10:59AM CDub wrote:

Camama2, how much hair did you lose using the Penguin cold caps? I'm about to start 12 weeks (4 cycles) of TC chemo and hair loss is the thing I'm most anxious about since I really don't want people to notice I am losing my hair! Just wondering if I'm going to need a wig even though I am cold capping, or whether it works well enough that you can get away with a baseball cap or even nothing at all.

Would love to hear or see pics about how much hair people still lose with cold caps. Does anyone retain all or almost all of their hair?!?

Thank you everyone for sharing your stories. it helps so much.

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Mar 4, 2021 12:26PM jennyjo20 wrote:


I used Penguin and retained most of my hair. I have thin hair to begin with, and I personally noticed that I was shedding much more than usual. But I worked throughout chemo and none of my clients noticed. Towards the end, I used Toppik hair fibers to keep my scalp from showing and give the illusion of fullness. The Penguin rep advised against it, but I feel almost certain that it didn't have any ill effect on the process and REALLY helped the thinning be less noticeable.

Diagnosed at 42 - Oncotype 24; CHEK2 mutation Dx 2/2020, IDC, Right, 1cm, Stage IIA, Grade 2, 1/5 nodes, ER+/PR+, HER2- (FISH) Surgery 3/18/2020 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 4/17/2020 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide) Hormonal Therapy 7/6/2020 Zoladex (goserelin) Radiation Therapy 7/12/2020 Whole-breast: Breast, Lymph nodes Hormonal Therapy 8/16/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/5/2021 Arimidex (anastrozole)
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Mar 9, 2021 07:20PM Mikeysmom925 wrote:

what are ear bags

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Mar 10, 2021 07:47AM claire1973 wrote:

Earbags: You can get them on Amazon. The brand is Sprigs. My ears suffer the most with the cold cap....the top of my head is fine. I spend a lot of time shifting around the earbags and clearing the little ice pebbles off of them. SillyHeart I don't actually put them ON my ears...I just put them between the ear and the cold cap so I can adjust them a bit.

Dx 12/15/2020, IDC, Right, 1cm, Stage IA, Grade 2, ER+/PR-, HER2+ Chemotherapy 1/7/2021 Taxol (paclitaxel)
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Mar 14, 2021 05:47AM kaylie57410 wrote:

hi there- I used Penguin caps during 4 rounds of Tc and saved 80-yes 80 percent of my long wavy hair and lost some more during 5 months of continuing shedding so in total kept 75 percent- I was thrilled to be able to look normal thruout-I highly recommend going for it- My daughter was my partner and yes sticking with it was exhausting- 7 hours total changing caps every 25 minutes--but we hung in there and so glad I did! you can pull up my posts from that time- lots of good support-tips etc.. Tc has a better track record for success than a regimen involving adriamycin- I knew this going in plus 4 treatment vs. 6 of the other helped me go with TC only- I will be 4 years out this June and doing ok- fingers crossed- I am at high risk for recurrence- 2 /2 nodes, grade 3 and high onc score- but made the right choice for me and am at peace with it- so far so good . I was 68 at the time- if I had been 15/20 years younger I might have gone with the more aggressive chemo--I just past 3 years on Letrozole with only minor muscular skeletal aches and pains-I can deal with that--stick with this forum- lots of us out there have come thru and have resumed living life-- you will too, hugs Kaylie

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Mar 14, 2021 05:57AM kaylie57410 wrote:

hi if you go with Penguin you can ask to rent previously used caps - they are totally fine and have been cleaned and sanitized- it was a couple hundred dollars a month cheaper- they do not offer up front- it is a business after all - you have to ask--best of luck - you can do this - many of us have and been so glad we did,,Kaylie

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Mar 24, 2021 07:34PM Mikeysmom925 wrote:

Yes, kaylie57410, you’re right about the discounted caps. The rep actually brought it up to me which was huge bc it is saving me quite a bit of money on the caps. Don’t forget if you choose to go with the capping method that the dry ice is an additional expense every time you go... expect it to be about $100 additional cost each time.

Question... I had my first treatment on 3/12 and have been babying my hair since then, as directed. Prior to chemo, I have always normally shed a lot of hair daily, and I’ve always been told I have a lot of hair to begin with. It feels like I’m shedding even less now (since my first tx) than I was prior to chemo, but I could just not be noticing it bc it used to happen when I washed and blew out my hair, so I would see the hair on the bathroom floor. I’m only about 13 days out, and I’m just wondering what I can expect after round 2, which is next week (I go every 3 weeks). Day 21 is the day before my 2nd chemo appointment and I’ve seen that day 21 is a significant milestone in the world of chemo cold capping. Can anyone explain what the significance of it is? I’m concerned that my day 21 is the day before round 2... does that matter? Also, while I’m hoping to keep a good amount of the hair on my head, I know better than to expect to keep the rest of it. When does that start happening typically? What about eyebrows and lashes? Do they always fall out or just shed? If so, when has that happened for you guys? I’m sorry I have so many questions... even though everything feels like it’s going well so far, I guess I just have an overwhelming fear of the unknown.

I hope everyone is feeling strong and enjoying the sunshine and spring air. Sending love and light to all of my warrior sisters...



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Mar 26, 2021 01:00PM claire1973 wrote:

Hi Dawn,

My hair was also doing the normal shedding, but there has been no new re-growth, yet. I did 12 weeks of weekly Taxol and has my final one yesterday! My 'other' hair (leg, arm, under arm and pubic) fully fell out at about 28 days past the first treatment. My eyebrows and eyelashes are still there kinda but pretty thin. I think maybe 25% is left. Those fell out after about my 6th 42 days post start. I just bought Latisse and am hoping for the best for my eye lashes.

I used the Dignicap. Their recommendation is to continue with the gentle hair care for another 4-8 weeks. I have no idea what signal will tell me that enough is enough. I have my surgery in one month, so that is an easy timeline.....stay the course until at least after surgery. I guess when my other hair starts growing back I will have a better idea of if my head hair is stronger and starting to grow back, too. I think I lose about 25-35%% of my hair but my MO thinks even less. I have fiarly think hair to begin with, too.

Dx 12/15/2020, IDC, Right, 1cm, Stage IA, Grade 2, ER+/PR-, HER2+ Chemotherapy 1/7/2021 Taxol (paclitaxel)
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Mar 27, 2021 03:30AM kaylie57410 wrote:

everybody is different in how much hair they lose-the 21 day mark is when a big shed typically happens- just the timing of how the hair reacts-continue to baby your hair and do not pull on it- I used a wide toothed wooden comb and gently combed in sections. also slept on silk pillow case and used a soft loose scrunchie at nite

I also lost all pubic hair-felt like an 10 year old for a while- lol- also eyelashes thinned a lot but not totally- leg,axilla hair fell out but is so light colored anyway, didnt really notice- -eyebrows too but I wear bangs so again not noticeable

I continued to shed for 5 months post capping- but hair was starting to grow back along that timeline- I hated losing hair but consoled myself with knowing that hairs are fast growing cells as are cancer cells so I figured the chemo was working- if I recall taxol may not cause a lot of hair lost- you can look that up--not certain on that..

do hang in there- how many treatments do you have to have?? you will be glad you did- I am 4 years out in June and doing fine--fingers crossed--Hugs to you- you can do this!

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Mar 28, 2021 01:56PM Mikeysmom925 wrote:

Thank you all so much for the feedback, wisdom, and encouragement. I’m pretty sure I had my first major “shedding” yesterday which also correlated with a washing. I was super gentle but still lost about three times the amount I would normally have lost prior to chemo, and that was in the shower alone. I continued to shed throughout the day and am still shedding today. I’m guilty of gently running my hands through my hair which I think has been aggravating it a bit but I’m forcing myself to stop bc the amount of hair that is coming out is freaking me out. It’s not noticeable yet but I’m wondering if it continues to shed at this rate after the first big shed (hopefully this was mine bc if it wasn’t, I’m pretty much screwed lol) or of it slows down a bit. My day 21 is the day before my next chemo treatment and I’m so nervous about all of it. I felt like I woke up this morning covered in a blanket of dread that I just can’t shake off. I think chemo, the diagnosis, my mastectomy, the whole process of this, had tested my issues of control to their limits. There is definitely a lesson for me in this, and it is that I obviously do not have control over so many things in my life, this being one of them, and I have to let go with grace and faith. My new mantra is “amor fati,” which simply means to love and accept your fate, no matter what it brings.

Hope you are all enjoying this Sunday and able to do whatever it is that makes you feel whole, healthy, and at peace today.

Much love to you all,


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Mar 31, 2021 05:32AM kaylie57410 wrote:

I so understand that blanket of dread that descends with out warning- it is suffocating and frightening -it is partially from a loss of control over what the future may dump on me--for me those moments occasionally occur when i first go to bed and am unwinding from the day-maybe my daytime business keeps it at bay most of the time- also when I am approaching a scheduled lab draw I notice it more--last year my alk phos was a bit up for a few months--can be due to something happening in either bone or liver or normal variations- had to have a liver us--found out xmas eve it was fine--havent been that scared since my bone scan at dx almost 4 years ago-particulary when the radiologist wanted more films of my spine-turned out to be my age related arthritis--but that fear is all consuming while it is happening=I am due for labs again next week- the ones in dec again short a mild increase--fingers crossed- toes too next weeks is back down-- I am 4 years out in June and doing fine----as far as I know................

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Mar 31, 2021 07:12PM - edited Mar 31, 2021 07:12PM by Mikeysmom925

This Post was deleted by Mikeysmom925.
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Apr 1, 2021 06:05PM btsot7 wrote:


im hoping someone on here can give me some advice. I am halfway through chemo (6 rounds of TCHP) and so far the cold capping has been great. Just a couple bald spots on the back of my head that can be covered.

I am getting mixed information about perjeta and hair loss and the need for cold capping.

After my 6 rounds of TCHP, I will continue HP for the remainder of the year. Does anyone know if I will need to cold cap while on HP alone? Since perjeta can cause hair loss? I am so stressed about having to do this for an entire year 😔

Dx 12/24/2020, IDC, Left, Stage IIIA, Grade 3, ER+/PR+, HER2+ (IHC) Targeted Therapy 1/28/2021 Herceptin (trastuzumab) Targeted Therapy 1/28/2021 Perjeta (pertuzumab) Chemotherapy 1/28/2021 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Apr 1, 2021 06:36PM - edited Apr 1, 2021 06:37PM by morrigan_2575

You shouldn't need to cold cap for HP. My understanding is the kind of hair loss from HP is similar to Kadcyla or Hormone Blockers. It's not like Chemo, it may thin or growth might slow down hurt, nothing drastic.

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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Apr 2, 2021 12:46AM WC3 wrote:

Cold capping is not necessary for HP. It does not kill off the follicular cells like the chemotherapy.

I lost most of my hair during chemotherapy despite cold capping but the interesting thing is, when it started to grow back in I did not shed a single hair until it got to just above shoulder length. I'm on anti hormone therapy now and shedding like crazy but it doesn't seem to be getting thinner.

Pathologic complete response (pCR) to chemotherapy. Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 6/1/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/15/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy Arimidex (anastrozole), Zoladex (goserelin) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Apr 2, 2021 08:29AM btsot7 wrote:

@morrigan_2575 & @WC3

Thanks so much for the responses ! hope my progress is consistent for the remaining 3 treatments :))

Dx 12/24/2020, IDC, Left, Stage IIIA, Grade 3, ER+/PR+, HER2+ (IHC) Targeted Therapy 1/28/2021 Herceptin (trastuzumab) Targeted Therapy 1/28/2021 Perjeta (pertuzumab) Chemotherapy 1/28/2021 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Apr 6, 2021 09:34AM - edited Apr 6, 2021 09:38AM by Mikeysmom925

Somehow I deleted my last post which was a long one ... I guess the universe did us all a I hope this finds all of you enjoying a beautiful day and able to feel the warm sunshine on your faces. I had my second treatment on Friday, 4/2, and I just washed yesterday... I am shedding so much it's scary. Between day 16 and now (around day 26) I feel like I have lost 75%... I still have hair, but I definitely have some bald and receding spots, and I am simply terrified of touching my hair or doing anything at all to it. Does the shedding continue at this rate? If so, I honestly can't see how I will have any hair left when this is all said and done. I know I should be grateful to have any hair at all, but I'm overwhelmed and afraid. I guess part of me feels like the unknown is still lurking around every corner. Is there anything I can do to slow the shedding process? I feel like I have read every post on this thread multiple times but I'm still clueless.

Did anyone on here use a wig even though they were cold capping? I am afraid that, with the onset of spring, a wig might make my scalp too hot and cause even more hair shedding. 😕 Any insights would be greatly appreciated.

Thank you all for sharing your wisdom and strength. I am truly grateful.


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Apr 6, 2021 09:48AM morrigan_2575 wrote:

the Shedding slows down as you go on. However, I was terrified of touching my hair. I only washed it once per week but, make sure you comb it daily, or else you get knots and that just makes it worse.

Dignicap cautioned against using wigs they didn't want the scalp to get hot and, cause more hair loss. I believe you can use Topix to fill in the thin hair area.

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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Apr 6, 2021 10:43AM Mikeysmom925 wrote:

morrigan_2575 thank you for that response. I figured as much about the wigs. Hopefully the shedding slows down because I know my anxiety about it is only going to make it worse. Does regrowth start during chemo or not until after all of your rounds have finished? I know I should know the answer to these questions but I think I'm just too overwhelmed to remember anything I learned until now.

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Apr 6, 2021 10:50AM claire1973 wrote:


I finished my 12 rounds of chemo on March 25th. I'm still only shampooing twice a week and not styling it. I have always lost hair in the shower and used to shower almost every day. I feel like the amount of hair in the drain with only 2 showers is equal to the amount of hair if I were to add up 7 showers....does that make sense? I still don't have regrowth. I'm kind of gauging it on my eye brows and pubic hair....nothing new there yet, so I'm guessing there is nothing new on my head yet. My MO sees hair loss all the time--I told her I though I'd lost about 50% of my hair. She says it looks more like 25%.

It's hard to be specific. I do remember being told many times that even if you lose a lot of hair with the cold cap it still helps with the regrowth being healthier and faster. It's hard that it's not an exact science.


Dx 12/15/2020, IDC, Right, 1cm, Stage IA, Grade 2, ER+/PR-, HER2+ Chemotherapy 1/7/2021 Taxol (paclitaxel)
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Apr 6, 2021 10:55AM Mikeysmom925 wrote:

claire1973 CONGRATULATIONS!!!! I'm so happy for you! Thank you so much for your response and for taking the time out of your "finished-chemotherapy-celebration-party" to share. How are you feeling now that you're done? Please keep us posted on your journey back to new and improved health!

Much love to you-


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Apr 6, 2021 11:07AM claire1973 wrote:

Thanks so much Dawn!

I feel good! I was doing weekly Taxol which is not as aggressive, so I almost feel like a sham posting that I feel good given what so many others are going through.

I went weekly on Thursdays, so this past Friday was my first Friday not pumped full of meds. I was still having ALL of the side effects until about 3 days ago. I still have several, but the nose bleeds and diarrhea have stopped (as off 3 days ago). I stopped taking the daily Prilosec after a week. I get heart burn some afternoons but it's manageable with Tums. I still cannot taste much. I still get tired if I do too much. My face still feels very very dry even though it's's a weird feeling around my I need to moisturize but it's not dry. I still have that. I still have minor neuropathy in my two pinky and ring fingers....and the hair drama continues, but not having to wear that cold cap for 4+ hours every week has been the thing I feel like celebrating the most. I'm glad I did it...but glad it's done. and the other two 'worst things' (the nose bleeds and diarrhea) are gone too which is celebratory. My surgery is on the 21st....I'm braced and anxious about that.


Dx 12/15/2020, IDC, Right, 1cm, Stage IA, Grade 2, ER+/PR-, HER2+ Chemotherapy 1/7/2021 Taxol (paclitaxel)
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Apr 6, 2021 01:48PM Buddhahead wrote:

A couple of things and I know these posts were done months ago. First, I've had a very positive experience with Penguin Cold Caps. They have been extremely responsive. I have been in chemotherapy that can cause hair loss (Taxol, taxotere, carboplatin) for nearly 2 years and still have my head hair after using them religiously. I also couldn't have anyone assist me for a few months, but the MO office provided an admin to help me.

Secondly, I was able to appeal the insurance company's denial of coverage. They denied my appeal, but I appealed to the state (CA) and their determination was overturned. If anyone would like more info on what kind of documentation I supplied to get it overturned, please reach out. I'm more than happy to share.

Dx 2/6/2012, IDC, Right, 1cm, Stage IV, metastasized to bone, Grade 2, 17/18 nodes, mets, ER+/PR+, HER2- Chemotherapy 2/17/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 5/29/2012 Lymph node removal: Right; Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 7/25/2012 Breast, Lymph nodes Surgery 3/5/2013 Reconstruction (left); Reconstruction (right)
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Apr 6, 2021 03:46PM renbird wrote:

Hi MikeysMom-

So sorry to hear you are facing the trauma of hair loss, on TOP of your treatments. Oy. Just the worst, isn't it? Ugh!

May I ask: What kind of chemo are you receiving and for how long? (I didn't see it listed on your profile.) That makes a big difference.

Here's my story, for what it's worth:

-I finished my chemo January 21st of this year (2021).

-I had a total of four Taxotere/Cytoxan treatments, one every (3) weeks.

-I started with a ton of hair, but Taxotere is well-known for hair loss so I was told to give it a try if I could afford it.

-I used the "machine" cold capping system at Dana Farber in Boston. My RNs say that without it, I'd likely have lost it all during treatment.

-I'm coming up on 11 weeks out from my last treatment (Yay!) and, as I was warned by one of my elder sisters, I am still losing hair each morning when I gently brush it, and definitely when I shower (still washing my hair only once a week.) (Boo!)

-I have baldish spots on top and in the back, but a "friar's fringe" as I like to call it all the way around, so when I wear a hat, NO ONE knows I'm a big baldie on top. I've actually had people ask where I got my hats! Hah! : )

ADVICE to consider:

1. Gently brush your hair once a day with a wide tooth flexible brush, starting at the ends to pull any loose strands though.

2. Washing with gentle shampoo and only warm water no more than once a week. I mix mild shampoo in a bowl and pour it gently over my head in the shower, gently "pushing" it through the strands I have left.

3. Do not style or blow dry it. Thank goodness the days are getting warmer.

4. Drink tons of water (I aim for 3 liters/day) This is just generally super good for you and your recovery! : )

5. You 'may' want to sleep with a satin/silky hair covering, like a satin shower cap.

If you do all this, rest assured you are doing everything right. (At least I've not found or heard of any other "miracle cures".)

Bonus: You may decide to add Vitamin B (Biotin) to your regimen with your doc's permission, of course.

My key advice: Try to just accept and relax about it as best you can. Learn to be "okay" with the hair loss and just say "This is happening now, and I may lose more/all of my hair, but this is TEMPORARY and it will grow back." Because IT WILL. Fighting it gets you absolutely nowhere and only causes more stress, and possibly more hair loss. I even imagined reinventing myself: punk rock bald Renbird? (I'm almost 50, but who cares?) Sari-wearing sage advice giving Renbird?

Also, take picture of the worst of it now, so you can track your progress when things get better. It helps! I'm so glad I did.

Status: Although my hair is still falling out, new "baby fuzz" is now rapidly taking it's place. On Jan 28th I took a photo of my bald spots, which were white. Now, they look "spray painted in" with dark baby fuzz. I am told that that will gradually be replaced by my new hair. Excited for that.

In other news, I started losing my eyebrows "right on time" at 6 weeks POST treatment, (UGH!) but now, just 4 weeks later, they are growing in FAST. You can't even tell they were almost all gone last month. This is what my lady elders on this site also told me, but I didn't believe them. Anyway, easy for me to tell you all this too, but I hope hope hope you can let go for now and have hope in the future. You might be lucky and it will stop (have definitely heard of that happening) but just in case, it might be best to just accept each day and know that this will be behind you one day, and you will be ME writing to a future YOU! : )

I'm still wearing hats out in public, (here's one I love!) but starting to not care now that the weather is nice. My family and friends love me and are so proud of me and that's enough to get me through. Hope you have lots of love around you–– I can tell you that I am VERY proud of you. Reaching out for help is so smart!

Be well and XO -Renbird

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Apr 7, 2021 08:23AM renbird wrote:

Hi GoKale4320-

Sorry it took me so long to reply...

Allllmost 11 weeks out from my last chemo treatment, I think I am following in your shoes. Shedding is still a thing, but yes, new baby fuzz is growing in. Hoping that by May my hair loss may slow/stop. I've come to accept it all much better with time.

Be well! : ) XO -Renbird

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