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Topic: Cold Cap 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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Nov 3, 2017 11:40AM Willow22 wrote:

toughcookie - isn't it wonderful to surprise people with so much hair!!!! I just had my port out, and the preop RN thought I had decided not to do chemo at all. When I said I'd already finished chemo, she wondered why I had left my port in so long (thinking I had regrown chin length hair since finishing). She was amazed and very interested (as were the radiation team) to hear about the process. I feel so lucky as I sit in the radiation waiting area, often with ladies who are just beginning to grow hair again, and I'm VERY GLAD I did it :)

Red - I used penguin cold caps, who send out a very nice "hair care" pdf. send me a PM if you'd like me to forward that to you. Some things they mention:

- use aluminum-free deodorant throughout chemo (I used Tom's baby powder scent aluminum free, but check carefully since they also make an "all natural" kind that does have aluminum in it)

- mix a small amount of the shampoo in a water bottle, and gently pour it over your head to wash. I patted a little to make sure it went everywhere, but no fingertip massage or rubbing the scalp.

- use tepid water (cooler than body temp) and very gentle water pressure to wet and rinse hair (or use a cup to gently pour over head). I hate being cold, so I used a round, flannel-lined patio table cloth and cut a slit up one radius and a small hole for the neck to make a shower cape. I use small chip clips/binder clips to close it - keeps my torso dry.

- DO NOT flip your hair upside down over your face to wash --- a number of gals with longer hair have gotten terrible tangles (some needing to be cut out!) doing this while washing (ie - don't wash your hair leaning over the bathtub with the water running from the nape of your neck down your hair).

- I use Kenra daily clarifying shampoo and then Kenra leave-in spray conditioner before combing. both are new products to me, and I like them so much I will continue even when done with all the cold cap hair care.

How long will the infusion center allow you to stay and cold cap after your chemo is complete? I think others have asked for extra time (that seems to be the one big difference between using caps on ice vs a cold cap machine).

good luck - you can do this! Willow
Willow22 Dx 5/1/2017, DCIS, Right, 2cm, Stage 0, Grade 3, ER-/PR-, HER2- Dx 5/26/2017, IDC, Right, <1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- Dx 5/26/2017, IDC, Right, <1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- Surgery 5/26/2017 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 7/18/2017 Chemotherapy 7/28/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 10/23/2017 Whole-breast: Breast, Chest wall
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Nov 4, 2017 10:42AM red332 wrote:

Thanks so much, everyone! A few more questions., if you don't mind...

I have already ordered Acure shampoo and conditioner. At my dignicap fitting, the technician recommended coconut oil. Have any of you used it? How do you apply it? And how often?

Also, did you wash hair the night before treatment or the morning of?

Willow22, I use aluminum free deodorant already (except in the hottest months) but wondering how that impacts hair loss. Do you know?

For medium-long hair (below shoulders) is it best to sleep with it loose, wear a cap, or pull it up in a loose bun with a scrunchie.

Someone mentioned a gel to put on eyebrows. Is that to prevent hair loss?

Someone mentioned an electric blanket. Did your infusion center allow you to use them?

Someone else asked about coldcapping time. At my hospital they start you 30 mins before the taxol, then you keep it on for 90 mins after it's done. I don't think you'd have the option to do longer, as I assume there is someone else who will be using the machine after me.

And one non-cold capping question: Is it a given that I will lose all my body hair during treatment?

Thanks so much!!!! My first treatment is Thursday. Will report in for sure!

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Nov 4, 2017 07:47PM SoniaL wrote:

red332, I shampooed the morning of my treatment and slept (on a satin pillowcase) with my hair loose. And yes, I did lose all of my body hair. Eyebrows, eyelashes, and nasal hair held on through the AC and several of the Taxol treatments but eventually all came out. I'm about 6 weeks post-chemo now and am just starting to see my brows and lashes return.

Dx 4/13/2017, DCIS/IDC, Both breasts, 1/20 nodes, ER-/PR-, HER2- Chemotherapy 5/11/2017 AC + T (Taxol) Surgery 10/20/2017 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 12/13/2017 Chemotherapy 2/11/2018 Xeloda (capecitabine) Surgery 3/18/2018 Reconstruction (right): Silicone implant Surgery 3/28/2018 Reconstruction (right) Surgery 8/22/2018 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Nov 5, 2017 07:05PM Willow22 wrote:

Red, PCC may be different, but they say not to wash your hair the day of or day before your chemo/capping session, and then to make sure you wash it on day 3 of chemo session (day of chemo = day 1). I had treatments on Friday, so I would wash my hair on Weds and use just a small amount of Kenra leave in conditioner spritzed on middle to ends of hair. Next wash would be on Monday after my treatment. You can wash sooner than day 3, but you need to wash on that day since you excrete chemo drugs through your skin, and want to be sure to wash it off on that day. I thought my hair would look terrible (I usually wash every other day before BC), but chemo made my scalp and hair so dry that even 5+ weeks after my last chemo, I am washing once per week and it looks normal.

PCC stresses not heating your scalp by wearing hats, so I slept with my hair loose, on a silk pillow case.

curious to hear what the technician is recommending you use the coconut oil for.... PCC also says not to use white/opaque shampoos or conditioners since they are occlusive and block oxygen to the follicle (I think that was the reason).... I guess the coconut oil would be liquid at body temp, but would be concerned that would be a problem for follicles.

I don't remember which meds you will have, but I did not lose all hair after 4 rounds of Taxotere/Cytoxan..... groin, arm pit, leg and nose hair were entirely gone (but they went at different times the first 2-4 weeks), eyelashes are skimpy at about 50% of normal, eyebrows are normal, and I guess I lost some of the really fine, light hair on my arms, but it's hard to see anyway.... I have heard you can lose brows and lashes after being entirely done with chemo, but I'm hoping at 5.5 weeks out that risk has passed :)

good luck!

Willow

Willow22 Dx 5/1/2017, DCIS, Right, 2cm, Stage 0, Grade 3, ER-/PR-, HER2- Dx 5/26/2017, IDC, Right, <1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- Dx 5/26/2017, IDC, Right, <1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- Surgery 5/26/2017 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 7/18/2017 Chemotherapy 7/28/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 10/23/2017 Whole-breast: Breast, Chest wall
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Nov 5, 2017 11:56PM - edited Nov 5, 2017 11:57PM by cndble

Hello fellow cappers. My last TC was on Halloween, so I'm about 5 days out. I've been surprised by the amount of hair I've shed in the last couple of days. It's not a huge amount like day 21 was for me, but I had hoped it wouldnt keep shedding like this. How long does the shedding last? I am in Seattle where you have to manual cap and I'd say I lost about 40% of my hair with a nice thin patch on top. Success for me (if the shedding stops!)

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Nov 6, 2017 07:46AM BeckyMD wrote:

I shedded for about 3-4 weeks after my last treatment.  I thought it would never stop.  I probably lost about 60-70% of my hair, even with the cold caps.  I still would do it again, though.

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Nov 6, 2017 09:49AM SJane wrote:

A question regarding not heating up the head.  Does this apply to exercise?  Are there recommendations to not work out & get sweaty while cold-capping?

Also, my onco nurse just told me a story of a cold-capper that lost lots of her hair after TCHP at about the 6 month mark.  Anyone have that experience or know of someone who has?

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Nov 6, 2017 10:39AM Willow22 wrote:

Hi, I am 5 1/2 weeks PFC (4 rounds of taxotere/cytoxan, 3 weeks apart) and my shedding is tapering off. It was pretty much the same through the 3 week "recovery period" following my 4th chemo as it had been in the intervals after the first 3 treatments (my expected hair loss is right around 21 days after each dose of TC), but I am losing less hair during the day and noticeably less hair when washing.

penguin cold caps says "try not to let your head get too hot and sweaty, as the heat after undergoing chemotherapy is not good for the strength of the hair bulb/root. If your head does get hot and sweaty you can rinse your hair with water, which is not hotter than body temperature, with a very light shower. You can also wear a penguin cold cap (from home freezer) to cool your head down after a physical workout."

with colder weather, I wonder if a damp cotton cap would keep the scalp cool, especially if working out outside.

SJane - are you nearing the end of your chemo?

willow
Willow22 Dx 5/1/2017, DCIS, Right, 2cm, Stage 0, Grade 3, ER-/PR-, HER2- Dx 5/26/2017, IDC, Right, <1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- Dx 5/26/2017, IDC, Right, <1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- Surgery 5/26/2017 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 7/18/2017 Chemotherapy 7/28/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 10/23/2017 Whole-breast: Breast, Chest wall
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Nov 7, 2017 12:00AM - edited Nov 7, 2017 01:30AM by MamaFelice

Good early morning ladies!

Willow, I think we should call you the "Cap Whisperer"! You are so kind and generous in your efforts to assist others through the capping process! 😘😘

Tomorrow is my day 21-- where I receive TC treatment #2-- and the pre-treatment steroids have me awake and alert! I have been lightly shedding and holding my breath to see what today and next couple of days bring. I will report again by week's end. Last I touched base I was headed to the beach with my family. All went fine as it was not too windy nor was it too hot. Heavy hairnets that I ordered on Amazon (see link below) have been my best friend! I wear them in the wind, when I am just tired of my hair on my face and shoulders, while I am in the kitchen or cooking, and when I sleep. I then wore a big floppy hat over the hairnet at the beach which kept my head shaded from direct sun and cool. Thank you all for your thoughtful tips and tricks!

https://www.amazon.com/gp/product/B00O2BSXYS/ref=oh_aui_detailpage_o04_s00?ie=UTF8&psc=1

**Edited to add that the main reason I purchased hairnets were to use under PCCs to keep hair from getting in the way of folds and Velcro-- worked like a charm!!

Dx 5/10/2017, IDC, Right, 2cm, Stage IIB, Grade 3, 2/3 nodes, ER+/PR+, HER2- Surgery 5/24/2017 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 9/4/2017 Mastectomy: Right; Prophylactic mastectomy: Left Dx 9/13/2017, IDC, Right, 5cm, Stage IIIB, Grade 3, 10/11 nodes, ER+/PR+, HER2- Chemotherapy 10/16/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 3/1/2018 Prophylactic ovary removal Hormonal Therapy 3/14/2018 Radiation Therapy Lymph nodes
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Nov 7, 2017 12:41AM MamaFelice wrote:

Also wanted to share my choices thus far to assist red332, as I too was full of questions before I started and will certainly be turning here with more in the months to come:

My details/ protocol is very similar to Willow's in that I am receiving TC (but 6 treatments) and using PCC. So with PCC, we have the same shampooing rules to follow-- 2 days before and 3 days after. I too have been surprised at my ability to go so long between washes --7-10 days. During those days I have even worked out, but not to the point where I have overheated my head...yet.... as I am a notorious sweat-er

I purchased a silk pillow case that I LOVE!! Wish I had always been sleeping on one! Let me know if you want link for one I ordered-- great quality! But I decided to also sleep in my hairnet to keep my hair contained-- and because I am mainly sleeping on my back since BMX recovery and wanting to avoid matting on back of head at all cost. I have thick wavy/curly medium- long length hair-- I posted hair net link in previous post.

I have always used organic, free of gunk shampoos, but my aresenal grew with a few that others have suggested especially for detangling and refreshing my curls between washes. Again, happy to share more especially with curly haired gals when needed. And loved a previous suggestion I received to mix organic leave in condish with water in a squirt bottle and spritz on mid to ends after wash and as needed between.

I also have always used natural deodorants without antiperspirant-- because I had read many years ago about the body absorbing the aluminum, but I have NO IDEA why the capper companies make such a point to not use. Definitely need to reach out to them to see what they say..... my curiosity is peeked!

I wear caps for about an hour pre-treatment and then 4-5 hours post. I did get some scalp "burns"along my part and will flip my part throughout the day for my treatment tomorrow with hope that helps. My hubby pulls them really tight! He even said his jaw was sore next day from clenching so hard! ❤️❤️

My hospital said no problem to me bringing electric blanket if I wanted, but I simply bring a regular blanket from home and they bring warmed blankets as needed. I did not have any brain freeze stage, or any real major discomfort, but I felt colder as the process went on.

I have not forged into lash and eyebrow treatments yet, but if anyone thinks it is helpful to do anything preventative let me know too as I am happy to try-- I will add it to my human science experiment that I feel I am living through! 😜

Lastly, I have not found any body hair to have fallen off yet, but legs & chin hairs (I'm so Italian!) have slowed down & softened in their regrowth.

That was a long post, but it feels nice to not be the one with questions for a change! Red332--good luck to you! It has been my understanding that capping has great success with Taxol protocols! Keep us posted so we can share your success with others too. I look forward to reporting back at the end of the week to see how big shed continues! Good luck all!! ☺️💗

Dx 5/10/2017, IDC, Right, 2cm, Stage IIB, Grade 3, 2/3 nodes, ER+/PR+, HER2- Surgery 5/24/2017 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 9/4/2017 Mastectomy: Right; Prophylactic mastectomy: Left Dx 9/13/2017, IDC, Right, 5cm, Stage IIIB, Grade 3, 10/11 nodes, ER+/PR+, HER2- Chemotherapy 10/16/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 3/1/2018 Prophylactic ovary removal Hormonal Therapy 3/14/2018 Radiation Therapy Lymph nodes
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Nov 7, 2017 06:59AM SJane wrote:

Mama Felice - it certainly sounds like you have a great handle on things. Please let us know when you find why it's advised to have no aluminum in deodorant.

Willow - thank you once again for sharing your wisdom with me. :) I had #5 of 6 last Friday and my last one is the day before Thanksgiving. I am thankful you are on the other side of things. I really wanna exercise and get sweaty, but I'd rather not if it means losing my hair at this point. It's hanging on pretty good

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Nov 8, 2017 08:21AM Pamela23 wrote:

Willow22--I had the same regime you had. I'll be curious to see how you are doing in 3 and 6 months. I had amazing hair the first few months after chemo and it has SLOWLY (and I mean I don;t see any hair at all) thinning out in the past 10 months PFC. I started with keeping 70% of my hair to keeping 30% of y hair. The new growth is probably 3 inches but my old hair used to cover it. Now I wear hats because I have more of a mullet. I don't have the longer hair on the front/sides of my head to to cover it as much, maybe 25% of it. But I look fine in a hat although the back has been see through since summer. I just wonder if the other women experienced this. I still don;t regret what I did! I never went bald and could pass off great hair for the first 5 months. Now it's just awkward, but doable.I wear hats or my halo in public. But again, it's so gradual that its not until I see pictures from spring and summer that I realize how much hair I had kept at that point. I will also add that I have never permanently colored or cut it since before treatments.

9/15/2016, IDC, Left, 5mm, Stage IA, Grade 3, ER+/PR+, HER2- Dx 9/15/2016, IDC, Left, <1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 10/6/2016 Lumpectomy: Left Chemotherapy 11/15/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/20/2017
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Nov 8, 2017 08:45PM cndble wrote:

So Pamela, cold capping worked for you initially, but you lost hair 6 months after chemo? I had a bad day yesterday. It was 7 days after chemo #4 (my last TC treatment.) My hair suddenly dried out like it never had before. It looked like straw and started matting like a dog. I didn't know what to do. I know chemo has a cumulative effect but holy cow. So I didn't try to comb it. I just put it in a low loose ponytail and went to bed in tears. Today it seems more back to normal. I got my comb through it slowly and lost some but not a dramatic amount. I really hope the shedding improves soon. I go back to work after 3 months on Monday. I'm glad I'll have some hair when I return.

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Nov 8, 2017 08:52PM Pambc010417 wrote:

MamaFelice - I draped a single thickness of guaze about 1" wide over my part. It allows the cold caps to work properly and protects your skin from direct contact with the cold cap. I taped the front of the guaze to my forehead and draped it over the part. I did not get burns on my skin due to cold caps.

Eyebrows and eyelashes: One thing I did during treatment was put a small amount of castor oil on my eyebrows and eyelashes. After treatment, I added using a generic lattise product called Careprost sold by Hendriks Scientific online. I've used this product for years and it is much cheaper to buy online than not. No prescription is needed, and I can buy the product for about $20 a bottle when on sale. They have 50% off several times and I stock up. I use Careprost on both my eyelashes and eyebrows. It has made both of them grow back very quickly

II had no eyebrows or eyelashes in August, and now my eyebrows and eyelashes have grown back thicker than before. For some reason I did not lose my eyebrows and eyelashes until a month PFC. but I did lose my body hair after 2nd TC treatment.

I’m like Pamela23. My shedding did not start until after I was finished with 4 TC treatments, 21 days apart. My shedding has slowed down now at four months PFC. I can tell it’s thinner but other people have not noticed. I started with very thick hair

Good luck everyone!

Pam

Dx 1/4/2017, IDC, Right, 1cm, Stage IA, 0/2 nodes, ER+/PR+, HER2- Surgery 3/8/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 4/26/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 8/4/2017 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 1/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 9, 2017 12:18AM MamaFelice wrote:

Good evening ladies! I'm awake riding on the steroid high!

Thank you Pam for gauze tip. I had 2nd TC on Tuesday during which I attached some gauze to top of forehead panty liner to protect hairline, and tried simply flipping my part throughout treatment. Next time I may use gauze down center part as well. Read that the flakes down my part might be from oil build up, but was thinking cap burn mainly because it is only down my part, yet they keep returning even after I try and flake them off. All in all, some eczema-type reaction.

Thank you ladies for sharing your brow/lash products with us. I have been writing them down for when needed soon enough.

Also, I appreciate you all sharing your long-term results! May I ask a favor of Pamela23, cnbdle, and Pam --so I do not have to look back over previous posts-- which capping system did you use during your treatments? I wonder if it makes a difference. Like Pamela23, my friend continued to shed quite a bit after her treatments (6 Taxotere Cysplatin-sp?), to where she calls her current hair a mullet (makes me laugh) as her new dark hair is growing in under her remaining long blond hairs. She used Arctic Cold Caps. She was first considering extensions about a month ago, but now that it has continued to shed, she is moving to cut remaining strands off and going with pixie. Regardless, She too would do all again because it has made experience/transition so much more manageable. Hoping for same here-- something to make it all as normal as I can for my children.

And to empathize with cnbdle, the morning after capping my hair too looks like a complete matted mess. I try my best to hold roots and comb out to minimize shed. Then spray my hair (not roots) with an organic curl reviver spray and spray a mixture of org leave in conditioner and water to try and bring it "back to life". It seems to be working between treatments thus far, but I still have 4 TC to go-- so expecting cumulative dryness and praying for the best!

Nice to talk about something other than chemo experience itself. Thank you ladies as always & big hairy hugs to you all! ☺️🦋

Dx 5/10/2017, IDC, Right, 2cm, Stage IIB, Grade 3, 2/3 nodes, ER+/PR+, HER2- Surgery 5/24/2017 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 9/4/2017 Mastectomy: Right; Prophylactic mastectomy: Left Dx 9/13/2017, IDC, Right, 5cm, Stage IIIB, Grade 3, 10/11 nodes, ER+/PR+, HER2- Chemotherapy 10/16/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 3/1/2018 Prophylactic ovary removal Hormonal Therapy 3/14/2018 Radiation Therapy Lymph nodes
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Nov 9, 2017 06:42PM Pambc010417 wrote:

MamaFelic- I used penguin cold caps.

Dx 1/4/2017, IDC, Right, 1cm, Stage IA, 0/2 nodes, ER+/PR+, HER2- Surgery 3/8/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 4/26/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 8/4/2017 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 1/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 10, 2017 03:26AM MamaFelice wrote:

Peeked at the thread that you all posted post capping hair pics on-- love pics and you ALL are beautiful!!

Pambc-- First, thank you for all your guidance on this journey! Your PMs early on helped me sooo much! You have such a thick head of hair! You still have a ton of time before your son's wedding, and if your hair thins more before then, your new growth will be plenty strong to hold extensions to fill in length....and can use until It then all grows out to a length that suits you. Definitely a great capping success!

Pamela23--beautiful too!! I can see the difference like you have shared in your pics from when you finished treatment to recent. Bummer how these drugs work and continue in our systems. Have you called the people at PCC to ask about how "normal" that is to continue for so long? I am very curious about the halo you talk about. Can you please share more or direct me to a post where you already have shared about it or even a pic? Since I will have 6 TC, I know things like a halo or extensions will certainly be needed to fill in until my hair grows out a bit to cut.

Thank you again for all your support! 🦋

Dx 5/10/2017, IDC, Right, 2cm, Stage IIB, Grade 3, 2/3 nodes, ER+/PR+, HER2- Surgery 5/24/2017 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 9/4/2017 Mastectomy: Right; Prophylactic mastectomy: Left Dx 9/13/2017, IDC, Right, 5cm, Stage IIIB, Grade 3, 10/11 nodes, ER+/PR+, HER2- Chemotherapy 10/16/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 3/1/2018 Prophylactic ovary removal Hormonal Therapy 3/14/2018 Radiation Therapy Lymph nodes
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Nov 10, 2017 05:15AM red332 wrote:

Good morning all. Thanks again so much for all of your hair care advice. I had my first taxol/herceptin treatment yesterday. Fortunately no ill effects so far from the infusion. However, the experience itself was pretty daunting. At my hospital, they ice hands and feet for patients getting taxol (90 mins total) to prevent neuropathy. So during half of my dignicap treatment I also had hands and feet on ice. The cold cap itself would have been bearable, but the icing sent me over the edge. I was wearing thermal underwear under track pants and a sweatshirt, covered in heated blankets, and I was still hivering, squirming, could not get comfortable or fall asleep (despite the benedryl basically demanding that i fall asleep). I had to keep taking my hands out of the ice and resting them (feet seemed to do better....i guess further away from my head) so I'm not sure how much benefit I got.

Any tips for surviving the cold next time? I am on a weekly protocol so I have to do this 11 more times. Right now it doesn't seem possible. I was wondering if they would let me wear any thermacare patches on my body (single use hot pads used for muscle aches). Or if there are any other ideas for staying warm under such circumstances?

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Nov 10, 2017 06:37AM PatinMN wrote:

Red, you could refuse the icing of hands and feet! I think icing to prevent neuropathy is a theory, not proven. Most make it through weekly taxol with little neuropathy, which resolves after treatment is finished. I used B6 (100 mg per day) and l-glutamine (30 grams per day) which seemed to mitigate my symptoms of neuropathy. Ask for evidence of effectiveness before continuing with icing

Dx 7/13/2012, IDC, <1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2+ Surgery 7/31/2012 Lumpectomy: Left Targeted Therapy 9/19/2012 Herceptin (trastuzumab) Chemotherapy 9/19/2012 Taxol (paclitaxel) Radiation Therapy 1/7/2013 Breast Hormonal Therapy 3/31/2013
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Nov 10, 2017 09:51AM cndble wrote:

I used Chemo Cold Caps out of Dallas. I liked their rack system in the cooler so you could handle the caps without actually touching the dry ice. Less glove wearing.

I did L-Glutamine before and after chemo treatments and haven't had any signs of neuropathy. Icing hands and feet and cold capping would have been very hard.

Now that I'm a week past my last chemo, I'll gather photos and post them today.

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Nov 10, 2017 10:01AM Elberama wrote:

Red - Yes, the cold capping and the icing of the hands and feet are a lot to bear all at once, but I say if you want to do all you can to avoid neuropathy, keep it up! I think that the icing makes a big difference. Your cancer center must have seen a big difference, too, or else they wouldn't offer it to everyone. I iced, and had NO, ZIP, NADA symptoms of neuropathy in my hands, and only mildly in the fourth toe of my right foot, which still feels a little funny now 4 weeks PFC, but some of the feeling did return. For my hands, there wasn't even a little neuropathy to resolve or to mitigate. My chemo nurses at Kaiser, which is a huge medical center, told me with a sympathetic face during my first Taxol that all patients get neuropathy, and for some it goes away, but for others it's forever. The way they told it to me with a shrug, it was like they were saying, "That's the price you gotta pay to stay alive." They see hundreds of patients on the 12-dose weekly protocol, and it their conclusion that everyone gets neuropathy. Some of the nurses offered ice to those who ask, but others didn't. They would ask me every week if I was feeling neuropathy, and as the weeks wore on, and I kept saying I felt no neuropathy in my hands, they were truly very surprised, because it was their impression that neuropathy escapes no one. Actually it didn't escape me, because I felt it in my toe, which may not have been as evenly on ice as much as my hands were.

Anyhow, as with all treatments during this process, you can certainly refuse if you're willing to accept the risk of the consequences. Judging by how few people iced at Kaiser, I realize I was in the small minority there in trying to do all I can to prevent neuropathy. I find it very interesting that your cancer center not only has Dignicap installed, but also have all their patients ice. That's quite an effort to them, and the very fact that they're making the effort, which costs them time and money, is testimony to how well it works. They must have seen enough patients go through the bad side of neuropathy that they were willing to add the extra hassle of icing all their patients. All these places are trying to trim costs at every level. They wouldn't do it if they didn't see evidence of effectiveness. Neuropathy is caused by nerve damage. Nerves don't always regrow and regenerate. If numbness resolves, it's only because your body managed to repair the nerve, and it might not be repaired to 100%. Icing makes sure that the Taxol doesn't reach the iced parts at full strength. To me, ways to prevent damage to the nerves in the first place is better than letting them be damaged, and hoping they'll repair themselves.

As for tips to stay warm during the treatment, my hands and feet were never directly wet. The medical assistant to helped me with icing offered me the thin disposable gloves to wear, and for my feet, I used a blue "chux" pad, plastic side down against a tray of ice, and the white pad side against my feet. I rested my bare feet on the pad, which was on the ice. Also, I was told I didn't need my hands and feet in the ice al the time. One nurse said, "in and out, in and out". All that movement of lifting my feet up and my hands up kept me warmer!

When I would remember, I would take a couple of Tylenol before the treatment, and that helped take the edge off the cold cap ice pain.

After the first Taxol, where they gave me IV Benadryl, they told me I could use Zyrtec instead, which was nondrowsy. I took a pill 1 hour before the Taxol infusion.

I used Penguin Cold Caps, which had me cap for 4 hours after the Taxol infusion was over, plus 50 minutes before the infusion began. In contrast, my hands and feet were only on ice for 1 hour, so that seemed bearable!

Good luck!

Dx at age 38; pregnancy associated (had baby boy in July 2016) Dx 4/7/2017, IDC, Left, 4cm, Stage IIIA, Grade 3, ER+/PR+, HER2- Chemotherapy 5/12/2017 AC + T (Taxol) Surgery 10/23/2017 Lumpectomy: Left; Lymph node removal: Sentinel Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Nov 11, 2017 12:32PM mdg wrote:

Hi Ladies! I have not hung out on this website or thread in a super long time! I used PCC's back in 2011 with great success. I now have a very close friend going through BC and she is interested in using caps to keep her hair. I know back when I used caps, PCC's had the most success - is that still the case? I know there were other capping companies coming out but didn't know if they were comparable or just as good as PCC's. When I was on here the other company's caps did not have as much success as PCC's. Any information would be appreciated! I am sure a lot has changed since I used them.


Maria Visit my BC Blog at breastcancerwontdefineme.blogs... Dx 12/13/2010, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 12/22/2010 Lumpectomy: Right Surgery 1/26/2011 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 3/2/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 5/18/2011 Surgery 6/21/2011 Reconstruction (left); Reconstruction (right) Surgery 12/9/2011 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Nov 11, 2017 06:38PM cndble wrote:

I used Chemo Cold Caps with good success. I've lost about 50% of my hair and I finished chemo 12 days ago.

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Nov 12, 2017 05:51PM Ckat wrote:

Hi all, I've been through two rounds of chemo using Penguin cold caps--I'll be doing a total of 12 weeks of Taxol and 4 rounds of Cytoxan. So far I have no hair loss, but after washing my hair tonight (it had been days so was quite greasy), I've noticed that a spot in the back of my head itches. I'm a little worried that this means impending hair loss, but it could also be from the lack of frequent washing. I used to wash every day or every other day before treatment. Have any of you experienced itching during cold cap use that didn't mean hair loss? Thank you and good luck to everyone!

Dx 8/12/2017, IDC, Left, 1cm, Stage IIA, Grade 1, 2/3 nodes, ER+/PR+, HER2- Surgery 9/9/2017 Lumpectomy: Left Chemotherapy Cytoxan (cyclophosphamide), Taxol (paclitaxel)
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Nov 13, 2017 02:55AM MamaFelice wrote:

Wow cnbdle!! You look great!! If that picture represents 50% of your hair, I imagine you really had a ton of hair to start! Is your hair still feeling really dry or has it bounced back? Any specific products you have been using?

Well, I have had a TON of shedding over the last few days-- when I comb through in the morning I have a sink full-- mushes up to the size of a rubber bouncy ball, but feels like a ton when I see it in the sink-- and then I am finding hairs all over me, and if I dare rub my hands through my hair, I always have several strands tagging along. I figure this is all typical of "the big shed period"-- today is day 26 from start-- and will hopefully slow down, or is this the new daily normal?

Msg-- congrats on your good health!! The ladies that had posted and continue to post & help on this thread have been a God-send to me-- both while learning about CC before I started treatments and during. I would have your friend go back several pages and read through the posts. She can then post or private message some members with any questions she may have. I chose PCC not only because of it having been around the longest with great success, but because a member here shared that PCC offered a discount rate that was less than the other companies rates, so how could I refuse that! My "discount caps" work great-- they just have marker/pen marks on them in places....my head is definitely frozen while I am wearing them!

Ckat -- I think the veteran ladies can answer you best as I'm just starting out.... but for what it is worth, I have oodles of constant itches. My nurse navigator said the hair "fall out feeling" is more of a tight ponytail ache than an itch. Good luck!

Thank you ladies and have a healthy week! ☺️

Dx 5/10/2017, IDC, Right, 2cm, Stage IIB, Grade 3, 2/3 nodes, ER+/PR+, HER2- Surgery 5/24/2017 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 9/4/2017 Mastectomy: Right; Prophylactic mastectomy: Left Dx 9/13/2017, IDC, Right, 5cm, Stage IIIB, Grade 3, 10/11 nodes, ER+/PR+, HER2- Chemotherapy 10/16/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 3/1/2018 Prophylactic ovary removal Hormonal Therapy 3/14/2018 Radiation Therapy Lymph nodes
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Nov 13, 2017 06:32AM toughcookie_21 wrote:

MamaFelice- I shed every day fairly consistently. Some days more than others. I don't have any bald spots, just thinner hair. But I had thick, coarse wavy/curly hair to start with, so this is not a huge loss to me and you really can't tell. I've just finished TCH #4 of 6 and I'm hopeful that things continue the way they have been.

mdg- I am using Chemo Cold Caps. I didn't know about the PCC discount or I might have gone with them. I believe that the success really depends on the chemo regimen and each individual person. Everyone who sees me at the infusion center and oncology office is shocked that I still have hair. They truly didn't believe that it would work. That being said, my husband is my capper and he is doing a great job, making sure that the caps are the right temperature before he puts them on me and that they are still below zero when they come off my head. I'd be happy to answer any questions your friend has and I wish her luck on this journey!

Dx 5/17/2017, IDC, Right, 2cm, Stage IB, Grade 3, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 7/18/2017 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 9/8/2017 Herceptin (trastuzumab) Chemotherapy 9/8/2017 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Nov 13, 2017 05:16PM mdg wrote:

Well any other information is appreciated. I am not sure which chemo she will have yet. I lived on these boards when I went through chemo...in fact I have photos of my hair all through chemo in my blog cause I wanted people to see that the caps work! Is anyone getting insurance to pay for caps? Back when I did them it didn't really happen. Unfortunately my friend's husband also has cancer right now and they have a young son. She is trying to keep things as normal as possible for her son during this hard time. Her husband I believe just had a recurrence and has another biopsy next week. I am hoping insurance will help pay in some way for the caps. Anyone have success? She has BCBS. If anyone has questions about my experience with PCC's let me know! I am happy to help you gals out! Blog link in my signature fyi.

Maria Visit my BC Blog at breastcancerwontdefineme.blogs... Dx 12/13/2010, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 12/22/2010 Lumpectomy: Right Surgery 1/26/2011 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 3/2/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 5/18/2011 Surgery 6/21/2011 Reconstruction (left); Reconstruction (right) Surgery 12/9/2011 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Nov 13, 2017 07:59PM PatinMN wrote:

Maria, one or maybe two got insurance to pay over the years I've been following this thread. Another one or two got some financial assistance from a charitable organization.. Check outthe FAQ section at rapunzelproject.org for info on insurance coverage. I did a quick Google search for financial assistance and found hairtostay.org.

Dx 7/13/2012, IDC, <1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2+ Surgery 7/31/2012 Lumpectomy: Left Targeted Therapy 9/19/2012 Herceptin (trastuzumab) Chemotherapy 9/19/2012 Taxol (paclitaxel) Radiation Therapy 1/7/2013 Breast Hormonal Therapy 3/31/2013
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Nov 14, 2017 08:56PM Fastgirl wrote:

Ckat--I don't recall itching early on, but definitely had itchy times during the chemo. Just try to ignore it, and don't scratch it! Also, I felt burning sensations at times throughout my chemo (taxol plus herceptin). Try to get accumstomed to a heightened awareness of your scalp, and these sensations that you didn't have before. I think it is all "normal" as part of the capping and chemo process. Also, your scalp/hair will get used to being washed only one a week. Good luck--you will do great!

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Nov 15, 2017 03:08AM Brightness456 wrote:

My scalp itched when I was capping, mostly on top near my part.. I think it was due to frostbite. My scalp peeled as well. Once I stopped capping, it peeled a lot for a few weeks. I had to pick it out of my dark hair, especially after I washed. Not pretty, but oh well. I’m just happy to still have my hair.

Maria, I’d also look into the rapunzel project. If they can’t help your friend, maybe they can make suggestions.

For those that have finished capping, what hair coloring did you use after a few months? I really only need a root touch up and won’t do it yet since I’m only 4 weeks out, but I want to start researching now. I remember someone mentioning something on this thread, but I couldn’t find i. PCC suggests a vegetable based, peroxide and ammonia free color but I’m not familiar with any particular brands. Thanks!

Invasive ductal carcinoma Dx 6/2017, IDC, Right, <1cm, Stage IA, 0/5 nodes, ER-/PR-, HER2+ (FISH) Surgery 8/10/2017 Lumpectomy; Lymph node removal: Sentinel Targeted Therapy 9/14/2017 Herceptin (trastuzumab) Chemotherapy 9/14/2017 Taxol (paclitaxel)

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