Topic: Cold Caps Users Past and Present, to Save Hair

Mar 4, 2021 12:26PM jennyjo20 wrote:

CDub,

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.

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. 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.

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

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 treatment...so...like 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.

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,

Dawn

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

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.

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 :))

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.

Apr 6, 2021 10:50AM claire1973 wrote:

Hi,

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.

xoxo

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 not....it's a weird feeling around my mouth....like 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.

Claire

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 BC.org 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