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Topic: Cold Caps: Success Stories with Photos here!

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: Oct 14, 2015 10:49AM - edited Nov 27, 2015 08:13PM by dancetrancer

dancetrancer wrote:

Hello! You asked for it, here it is. A thread for cold cappers to post their success stories with pics.

Please list your regimen (if not in your signature) and a brief description of what the experience was like for you along with the type of caps you used. PLEASE include pics - a picture is worth a thousand words and is very encouraging for newbies and those currently going through treatment.

My regimen was TCH. I saved my hair with CC's. I am SO glad I did it! I used Penguin brand. I shed during and for a long time post (4 months post!). However, I never shed enough that others could tell I was in treatment. A link to my pics is listed in my signature.

For questions about the process/tips to get started, etc., please see other threads.

The thread for FAQ's for newbies is here: Cold Cap FAQ's - newbies - how to save your hair from chemo

The thread for posting questions, where the majority of cappers congregate, is located here: Cold Cap Users Past and Present, to Save Hair

I would like to keep this thread focused upon sharing success stories with pics. I don't want it to get sidetracked or it will become WAY too long and hard to navigate.

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Oct 14, 2015 02:47PM - edited Apr 11, 2016 04:32PM by hope49

I used the Penguin Cold Caps successfully in early 2013. I had 4 rounds of Cytoxin/Taxotere. Although my MO was doubtful the caps would work - and the nurses told me they definitely would not, I stuck to my guns and moved forward with my plan. I knew they would work based on all the successes I read about on these boards. I hired a Cold Cap helper from Minneapolis to train my capping team and coach us through the first treatment - she was wonderful. I also met mdg on the Cold Cap User board and she kindly met with me to get started and shared her supplies which we've now handed down to 4 other successful cappers in our area!

I shed a fair amount during treatment and for about 3 months after, losing the most over my ears and the nape of my neck, but really only noticeable to me. Below are my pictures - last treatment day, 2 weeks afterward, then my tiny ponytail a couple of months after chemo, and much thicker ponytail about 4 months later, an

Dx 8/24/2012, ILC, 6cm+, Stage IIIA, Grade 1, 4/14 nodes, ER+/PR-, HER2- Chemotherapy 1/9/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 4/16/2013 Breast, Lymph nodes Hormonal Therapy 6/8/2013
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Oct 14, 2015 04:03PM mdg wrote:

I used cold caps in 2011 with success. I had TCx4. I was lucky as my MO's office had a freezer and caps so I didn't have to deal with dry ice and coolers. I have put some photos and my story in my blog. There are several posts about cold caps on there you can easily find. Link to my blog is in my signature below. I did my treatment in the Detroit area but now live in Chicago area.

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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Oct 19, 2015 04:03PM - edited Oct 19, 2015 04:05PM by BBwithBC45

I was indecisive whether I should use the cold caps. I didn't know if I was up for the cost and the amount of work it required. Also, I thought I would be working throughout chemo and I didn't want to have to deal with greasy and un-styled hair in an office environment. Then I found out that I would be allowed to work from home. My husband thought it could be worth to try and whatever my decision, he was on board and willing and able to be my cold capper and my Mom was coming to stay with us for a few weeks, so I had two helpers. My MO didn't have much experience with cold capping patients, but did not have any contraindications for me and didn't mind if I tried. I started reading the Cold Capping thread and asking some questions and then Hope49 contacted me and offered to tell me about her experience. She also arranged for me to obtain all the necessary supplies from a previous cold capper in our area. I cannot tell you how helpful this was to have all the supplies already put together, and to have questions answered over the phone - thank you again, Hope49! Smile

Today I am exactly 5 months PFC and nobody can tell that I went through chemo by just looking at me. My MO's PA was astounded that week after week I was coming in for my infusion with a full head of hair. I have been contacted twice already by my MO's office asking if I could talk to two other patients about my experience. I replenished the supplies and passed them on to one of these ladies.

I had minimal shedding throughout my chemo and I am one of the cappers who started shedding mostly after completing the infusions. I don't have any bald spots, just overall thinning but not noticeable to others, just me (at least nobody dared to tell me Happy). I have new growth above my ears and at the nape of my neck. All in all, I am VERY HAPPY that I gave cold caps a try.

This is about 10 days before first chemo, after wash and not styled. Sorry for the gloomy face, I was not in a great mood thinking of chemo:

This is the same day, still not styled, back of my head:

This is one week PFC, the day of wash. I do not see much difference from before chemo, even though I admit - I was collecting the hair that has fallen in a zip-lock baggie and it looked like I lost 5-10% of my hair by that time:

And the top of my head, one week PFC:

And the back, one week PFC:

And this the wash day, almost 16 weeks PFC:

This is the top:

This is the back:

And for final showing, this is my hair after some curling iron on the ends, with a smile! Happy

Saved my hair with cold caps. Dx 1/4/2015, DCIS, Left, Stage 0, Grade 3, 0/2 nodes, ER-/PR- Surgery 1/12/2015 Lumpectomy: Left; Lymph node removal: Left, Sentinel Dx 1/17/2015, IDC, Left, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2+ (FISH) Surgery 2/2/2015 Mastectomy: Left; Reconstruction (left): Tissue expander placement Targeted Therapy 3/3/2015 Herceptin (trastuzumab) Chemotherapy 3/3/2015 Taxol (paclitaxel) Surgery 6/1/2015 Reconstruction (left): Tissue expander placement Hormonal Therapy 6/8/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/30/2015 Reconstruction (left): Silicone implant Surgery 3/8/2016 Reconstruction (left): Silicone implant Surgery 6/6/2016 Prophylactic ovary removal; Reconstruction (left): Fat grafting Surgery 10/10/2016 Reconstruction (left): Fat grafting Surgery 7/17/2017 Reconstruction (left): Fat grafting
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Oct 20, 2015 11:41PM sassy49 wrote:

I had 4 Taxotere/Cytoxin treatments 3 weeks apart. The first two photos below are pre-chemo. The second two are 10 weeks PFC. Most of my thinning occurred PFC. The majority of the thinning was from the sides and over my ears. As you can see, it has already started to grow back.

To all of you considering cold caps, they work! Not only did I get to keep my long hair, but I felt empowered and in control. I was more motivated to get out and exercise, drink water, socialize and do other things that aided in my recovery. Cold capping is a lot of effort and a little pain, but oh, so very worth it.

If you have questions, please PM me. I am happy to help!


10 weeks PFC


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Oct 25, 2015 11:33AM cabland wrote:

Hi dancetrancer, per your request, I am posting a link to my wife's journey (so far) with the Paxman cold-capping clinical trial in the U.S..  We still don't know the final outcome or course regarding her hair since we are only 25 days PFC, but overall, it was positive:

Paxman Cold-Capping Clinical Trial - Our Experience

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Nov 4, 2015 08:09PM RoxGo wrote:

I had 4 rounds of cytoxan/taxotere 21 days apart. I used the penguin brand. My biggest shed was between my 1st and 2nd infusions. My hair is EXTREMELY thick and I lost a lot of hair on one side of my head (odd it was only 1 side), but my hair loss is easily covered. I followed the hair are instructions exactly.

I am so happy I used the caps. They allowed me to see myself when I looked in the mirror and not a cancer patient.


Before treatment.

28 days post chemo #1 & after my largest shed


Taken the same day as the above pic (28 days post 1st round)

Taken 11/3. Finished chemo on 10/23

Taken today, 11/4.

I hope these help. I feel like I would have shed less if my hair wasn't as thick, but I am still so happy with my results.

Best of luck to all future cold cappers Happy

Dx 6/19/2015, IDC, Right, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery Mastectomy: Left, Right; Prophylactic mastectomy: Left
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Nov 5, 2015 04:23AM Meow13 wrote:

Roxgo, you look great. I wonder if the area around your ear didn't have close contact with the cap.

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Nov 7, 2015 03:02PM jodes001 wrote:

Hi ladies!

I have a question.....how can I find out if theres anyone in the Mesa Arizona area that has used the caps??

I'd love to know if any supplies are available near by for me! Thanks!!

Happy

Dx 9/2015, IDC, Right, 1cm, Grade 2, 0/2 nodes, ER+/PR+, HER2+ Surgery 10/6/2015 Lumpectomy: Right Chemotherapy 12/7/2015 Taxol (paclitaxel) Targeted Therapy 12/7/2015 Herceptin (trastuzumab) Radiation Therapy 3/14/2016 Whole-breast: Breast
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Nov 7, 2015 04:55PM - edited Nov 15, 2015 11:18PM by pch


Ok Dancetrancer, here it is. Here's my hair prechemo (don't judge--windy day at the lake!). Pic's a couple of years old, but I had nothing but lame selfies.



And here I am seven months PFC, taken today. My dogs are clearly way more glorious than I am. But they're wearing the bandannas that I NEVER NEEDED because I saved my hair with Penguin Cold Caps! (Laughing. Free plug, Penguin.) Never needed the bandannas. You can do it ladies. This is about 65% of my hair (with about two to three inches regrowth at the base and some awesome cowlicks). I lost a about an inch swath at the sideburns, over the ears, and around the nape like many cappers. I had thin spots. I had very thin spots. But I used Toppik. And nobody ever knew. :)

PS My regimen was taxol/carbo x 5, dose dense, every three weeks. Also, I've trimmed an inch to two inches every 4-6 weeks since about 5 weeks PFC. (My stylist cuts it dry and very gently.) Makes it much easier to keep the longer, thinner locks looking good.


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Nov 7, 2015 10:51PM dancetrancer wrote:

jodes - most posters are congregated on the main cold caps thread, where I know you have been. Post that question over there. We don't keep a directory of cold cappers. Off the top of my head, I don't recall anyone from that area who has posted, but my memory isn't the greatest for things like that.

pch, you rock - thank you, and everyone else, for posting their before and after photos!

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Nov 16, 2015 03:40PM Angiel wrote:

Thank you Dancetrancer for creating this board! I apologize it's taken me so long to add my pics.


This is my before picture....before diagnosis....before Penguin Cold Caps.....

These pictures were taken right before my final chemo....no color-treated hair...only air-dry styling....following 4 AC treatments and 11 Taxols over the course of 5 months. I figure that I wore the caps for a total of 110 hours!!! Now, that is a cold thought! I estimate that I lost about 35% of my hair but I had very thick hair to begin with.


This picture above was taken at about 10 weeks PFC. I already had new growth coming in & my part was filling in nicely.

And here I am most recently - 5 months PFC - after blowing drying & curling. I couldn't be happier with PCC. Not only did they save my hair, they allowed me to keep a sense of normalcy throughout this whole journey and for that, I will be forever grateful.

I posted a lot of pictures throughout my chemo journey to track the progress of my hair. For more pics, click on my name & you can see older posts with pictures.

Dx 1/7/2015, IDC, 4cm, Stage IIIA, Grade 2, 3/14 nodes, ER+/PR+, HER2- Chemotherapy 2/9/2015 AC + T (Taxol) Chemotherapy 4/8/2015 Taxol (paclitaxel)
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Nov 16, 2015 03:49PM dancetrancer wrote:

Whoop, whoop, whoop! Thank you Angiel - another great success story!!! All you ladies rock! This thread always brings a big smile to my face! Happy

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Nov 17, 2015 10:38AM pch wrote:

Angie! Look at your fine self! (Sorry DT, I had to remark .. :) ) I honestly thought you were cheating with a topper. (And I wore your fun red plaid shirt yesterday, the perfect length--and super cool sort of North Woods grunge if you play it right.)

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Nov 17, 2015 10:54AM dancetrancer wrote:

LOL well I started it by remarking myself, ha ha ha! I like the comments/compliments! I just want to refer questions to the main CC thread where the majority of supporters are.

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Nov 17, 2015 11:28AM Angiel wrote:

Haha PCH, that's funny! I actually bought a topper but have only worn it 4 times - 2 nights out & 2 family picture sessions. I can't believe I don't even need it! Glad to hear you are rocking the shirt!! it's perfect for our climate :-)

Dx 1/7/2015, IDC, 4cm, Stage IIIA, Grade 2, 3/14 nodes, ER+/PR+, HER2- Chemotherapy 2/9/2015 AC + T (Taxol) Chemotherapy 4/8/2015 Taxol (paclitaxel)
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Nov 18, 2015 03:04PM Suladog wrote:

Hey there...

Dancetrancer suggested my posting here. I did 12 Tx starting in Jan and went to the middle of April..anyway here are some pics to show how well the penguin cold caps worked...the only thing I didn't care for was the inability to color my hair during treatment however.....I started having spent the past year growing out my hair....

Here I am a month before starting chemo..my tumor was 7mm so I was getting conflicting opinions about whether or not I needed chemo..

after the Dana-Farber study suggested chemo, I was in.

2 months after starting my hair looked like this

it was growing all through chemo... then right after chemo...this:

and this

I've had my hair trimmed twice since finishing chemo...I kept my hair which was to my shoulders when I finished, the picture above was after a trim. I did lose all my eyebrows, lashes. body hair and not only did the carpet not match the drapes..I basically had hardwood floors.

I was totally satisfied with Penguin Cold Caps...I'd had chemo for trip neg bc back in 1990..no caps back then.....what a great thing and I'd never had known if my doc at UCSF Laura Esserman not suggested them. The Writers Guild of America Health insurance that both my husband and I have paid for a good portion of the total expense to my surprise.

Dx 6/6/1990, IDC, Left, <1cm, Stage IA, Grade 3, 0/18 nodes, ER-/PR-, HER2- Surgery 7/20/1990 Mastectomy: Left Chemotherapy 8/19/1990 CMF Dx 10/5/2014, IDC, Right, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (FISH) Surgery 10/28/2014 Mastectomy: Right Chemotherapy 1/28/2015 Taxol (paclitaxel) Targeted Therapy 1/29/2015 Herceptin (trastuzumab) Hormonal Therapy 5/30/2015 Arimidex (anastrozole)
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Nov 18, 2015 06:58PM pch wrote:

Sula, you look great!

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Nov 18, 2015 08:59PM Angiel wrote:

Wow Sula! You look great! It doesn't even look like you lost any hair!!! How wonderful!!

Dx 1/7/2015, IDC, 4cm, Stage IIIA, Grade 2, 3/14 nodes, ER+/PR+, HER2- Chemotherapy 2/9/2015 AC + T (Taxol) Chemotherapy 4/8/2015 Taxol (paclitaxel)
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Nov 19, 2015 07:52AM dancetrancer wrote:

Thank you so much Sula!!! Looking fab as always!!!

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Nov 19, 2015 01:20PM Suladog wrote:

Thanks guys..I'm off to get a coloring in a few minutes.....I really didn't lose much hair at all..so I felt very lucky.

Dx 6/6/1990, IDC, Left, <1cm, Stage IA, Grade 3, 0/18 nodes, ER-/PR-, HER2- Surgery 7/20/1990 Mastectomy: Left Chemotherapy 8/19/1990 CMF Dx 10/5/2014, IDC, Right, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (FISH) Surgery 10/28/2014 Mastectomy: Right Chemotherapy 1/28/2015 Taxol (paclitaxel) Targeted Therapy 1/29/2015 Herceptin (trastuzumab) Hormonal Therapy 5/30/2015 Arimidex (anastrozole)
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Nov 27, 2015 10:45AM dancetrancer wrote:

bump for newbies

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Nov 27, 2015 07:35PM milkchess wrote:

First post here - I used cold caps exactly 2 weeks ago and just started shedding today. What's "normal" amount to shed with cold caps and how do you know if it's working? Any tips from your experience would be great!

Dx 8/31/2015, IDC, 1cm, Grade 2, 0/3 nodes, ER+/PR-, HER2- Chemotherapy 11/12/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery Mastectomy: Right
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Nov 27, 2015 08:09PM dancetrancer wrote:

milkchess - welcome - please ask your question on the main cold caps thread located here: https://community.breastcancer.org/forum/6/topics/...


Also, please review the FAQ thread for newbies here: https://community.breastcancer.org/forum/6/topics/...


Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Nov 27, 2015 09:20PM Warrior_Woman wrote:

Great idea, Dancetrance.

All my old friends are here. You're all looking good.

I lost a lot of hair. I'm guessing 50% but I survived. It grew in very quickly. There were months when I had both curly, wavy and straight hair. It lacked shine and luster. 18 months PFC and it was completely back to normal. The texture, length and shine came back. My nails are also strong and healthy again.

Cancer sucks. But then you already know it.

Neurofibromatosis type 1, BMX & a total of 11 surgeries, chemo and hormonal treatment. FU cancer. I'm better than ever! Dx 9/2013, IDC, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/2013, LCIS, 0/1 nodes Dx 12/2013, DCIS, 0/1 nodes Hormonal Therapy Aromasin (exemestane) Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Nov 27, 2015 09:43PM dancetrancer wrote:

WW - such a great result - so glad you came back to share your before and after!!! Thank you!!! You look beautiful! *%!% cancer!!! Smile

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Nov 28, 2015 03:11PM - edited Nov 29, 2015 01:42PM by jodes001

This Post was deleted by jodes001.
Dx 9/2015, IDC, Right, 1cm, Grade 2, 0/2 nodes, ER+/PR+, HER2+ Surgery 10/6/2015 Lumpectomy: Right Chemotherapy 12/7/2015 Taxol (paclitaxel) Targeted Therapy 12/7/2015 Herceptin (trastuzumab) Radiation Therapy 3/14/2016 Whole-breast: Breast
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Dec 13, 2015 04:49PM Leslienva wrote:

Here I am after my first chemo.

Saved my hair with Penguin Cold Caps! Dx 8/1/2014, IDC, 3cm, Stage IIA, Grade 2, 0/0 nodes, ER+/PR-, HER2- Surgery 9/17/2014 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 11/3/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 2/12/2015 Aromasin (exemestane)
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Dec 13, 2015 05:02PM Leslienva wrote:

Here are some photos during chemo

Saved my hair with Penguin Cold Caps! Dx 8/1/2014, IDC, 3cm, Stage IIA, Grade 2, 0/0 nodes, ER+/PR-, HER2- Surgery 9/17/2014 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 11/3/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 2/12/2015 Aromasin (exemestane)
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Dec 13, 2015 05:11PM Leslienva wrote:

Here's my hair a few months after cold capping. You can see some of the new hair growth around my bangs.

Saved my hair with Penguin Cold Caps! Dx 8/1/2014, IDC, 3cm, Stage IIA, Grade 2, 0/0 nodes, ER+/PR-, HER2- Surgery 9/17/2014 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 11/3/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 2/12/2015 Aromasin (exemestane)
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Dec 13, 2015 06:04PM dancetrancer wrote:

Thank you so much for posting your pics Leslie - looking beautiful!

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.

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