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

Forum: Managing Side Effects of Breast Cancer and Its Treatment —

This is a place to discuss concerns, tips and strategies for all types of side effects from all types of medications and treatments, (chemo/rads/hormonal/targeted/pain meds/etc.

Posted on: Jun 14, 2009 07:04PM

Can-D wrote:

Hi all, I wanted to start a forum for all us that are using the cold caps to try to save our hair.  I am on FEC100 X3 followed by Taxotere X3.  My dosage unfortunately is not a guaranteed success.  I am 40 days out from my first treatment and will have my third June 17.  So far I have thinned but have not required a wig.  I have no bald spots; however, around my right ear is the thinnest..I think because the cap wasn't tight there.  All in all, I am pleased to still have a good covering.  If you are using or have used the Cold Caps, I would love to hear your experience.  Take care, Candy

FEC100 X3 followed by Taxotere X3, Bilateral Mx w/ immediate reconstruction..Wake Me Up When September Ends!!! Dx 3/19/2009, IDC, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2-
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Feb 23, 2020 08:18PM Cynd724 wrote:

I finished the dose dense ACT chemo treatment on January 30th and I used the DigniCap. I’m so thankful to say I still have my hair. It shed a lot And my hair was already thin to begin with but I always had full coverage. It was only right after chemo ended that I noticed some almost bald spots on top of my head. My hair is still shedding but I think that should stop in another week or so. Anyway, I want to share that I found an amazing product on amazon that fills in my bare spots and you would never know I even had thinning hair. It’s called Toppik. It is a miracle powder and I highly recommend it. I’m posting pictures of before and after. You just sprinkle it on and it stays on even when you sleep. It washes right out when you want it to.

Dx 9/3/2019, IDC, Left, 1cm, Grade 3, ER+/PR+, HER2- Surgery 9/16/2019 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 10/23/2019 AC + T (Taxol)
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Feb 24, 2020 04:09AM Anotherone wrote:

wow that is amazing indeed!

Primary in 2006, metastasis 2019. Sorry can lot log in diagnosis and treatment info properly - it gets jumbled. Dx 10/10/2006, IDC, Left, Stage IIIC, metastasized to lungs, Grade 3, 4/9 nodes, ER-/PR-, HER2+ Dx 7/1/2019, IDC, Stage IV, metastasized to lungs Chemotherapy 9/17/2019 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy Herceptin (trastuzumab) Radiation Therapy External: Chest wall Surgery Lymph node removal: Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Tissue expander placement
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Feb 24, 2020 06:33AM morrigan_2575 wrote:

thanks for the recommendation

Dx 1/20/2020, DCIS/IDC, Right, 4cm, Stage IA, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 2/4/2020 Perjeta (pertuzumab) Targeted Therapy 2/4/2020 Herceptin (trastuzumab) Chemotherapy 2/4/2020 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Feb 24, 2020 09:37AM - edited Feb 24, 2020 09:41AM by JRNJ

Cynd Looks great! Do you have to use the spray they sell after putting the powder in? I'm using root touch up sprays. They work pretty good. They get all over pillows and hats. Toppik says it doesn't come off. I find that hard to believe based on reviews. I’ve also used powder touch ups before

Pleomorphic Multifocal, Extra nodal Extension, Lymphovascular Invasion. TEs removed due to infection Dx 8/15/2019, ILC, Right, 2cm, Grade 3, 2/5 nodes, ER+/PR+, HER2- Dx 8/15/2019, LCIS, Right, 6cm+, Grade 3, ER+/PR+, HER2- Surgery 9/24/2019 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/2/2019 CMF Radiation Therapy 3/30/2020 Whole-breast: Breast, Lymph nodes, Chest wall
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Feb 24, 2020 11:58AM Cynd724 wrote:

JRNJ I haven’t noticed any powder coming off on anything including my pillow. I use a little hairspray to set it after I apply it. You don’t need to buy their spray. I use Toppik to fill in thinning areas but not for root touch up. Also it is not itchy or anything. I sometimes need to reapply a little in a day or two if I haven’t washed my hair but it stays in pretty well. The only mess is when you apply it since the powder gets on the sink and countertop

Dx 9/3/2019, IDC, Left, 1cm, Grade 3, ER+/PR+, HER2- Surgery 9/16/2019 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 10/23/2019 AC + T (Taxol)
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Feb 24, 2020 12:41PM morrigan_2575 wrote:

i didn't think we were allowed to do anything to the hair for 4 months after last chemo? This is cool if I can use it, or anything to cover up 5 months of gray 😁

Dx 1/20/2020, DCIS/IDC, Right, 4cm, Stage IA, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 2/4/2020 Perjeta (pertuzumab) Targeted Therapy 2/4/2020 Herceptin (trastuzumab) Chemotherapy 2/4/2020 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Feb 25, 2020 07:43AM MNSusan wrote:

I did my first session with the DigniCap yesterday. Those first 20-30 minutes are no joke! Then it got better, thankfully. I know we’re not supposed to wash the hair more than twice/week. Can I wet it and gently comb out? I’ve got pretty short hair and it looks pretty wild after being smashed by those caps for 3-1/2 hours.

Allergan Natrelle Style 45-700 ccs Dx 10/2005, DCIS, <1cm, Stage 0, Grade 2 Surgery 12/1/2005 Lumpectomy: Left Hormonal Therapy 12/31/2005 Dx 10/2012, DCIS, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 11/6/2012 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 11/7/2012, IDC, 1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 5/15/2013 Reconstruction (left); Reconstruction (right) Dx 1/2020, Stage IV, ER-/PR-, HER2+ (IHC) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Taxotere (docetaxel)
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Feb 25, 2020 09:52AM seawell wrote:

cynd724.....

That looks truly amazing! Thanks for sharing!
Dx 3/2019, ILC, Right, 1cm, Stage IA, 0/2 nodes, ER+, HER2- Hormonal Therapy Femara (letrozole) Radiation Therapy Whole-breast: Breast Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery Lumpectomy: Right
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Feb 25, 2020 10:00AM seawell wrote:

MNsusan

Congrats on getting thru round 1! I agree that the first 30 mins of capping on Dignicap are truly an uncomfortable situation. I think I cried a couple times. For a while after my chemo was done, I would get nauseous just thinking about those first 30 minutes. Drugs help for sure. My doctor gave me Xanax and norco beforehand.

I think it’s fine to dampen your hair.....maybe use the spray bottle .......my experience was lots of tangling when I tried to wet it in the shower, but I had long hair. (I cut it shorter after chemo was done). A spray on detangler would be helpful. I found one made for babies that’s chemical free and gentle.

Good luck to you.

Dx 3/2019, ILC, Right, 1cm, Stage IA, 0/2 nodes, ER+, HER2- Hormonal Therapy Femara (letrozole) Radiation Therapy Whole-breast: Breast Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery Lumpectomy: Right
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Feb 25, 2020 10:20AM morrigan_2575 wrote:

i have to pay for my dignicap directly through the website and, i almost forgot to pay for this week. I wish they'd charge for 6 sessions up front or I could setup a recurring charge for every 3 weeks.

I'm afraid one day I'll totally forget. Although I think I could even do it the morning of but, it would be better if they had a different system.


Dx 1/20/2020, DCIS/IDC, Right, 4cm, Stage IA, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 2/4/2020 Perjeta (pertuzumab) Targeted Therapy 2/4/2020 Herceptin (trastuzumab) Chemotherapy 2/4/2020 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Mar 1, 2020 01:52PM Cynd724 wrote:

Morrigan, I also heard that we have to be gentle on our hair for a few months after chemo but I think and hope toppik is ok to use. It said it doesn’t cause more hair loss. I wouldn’t dye my hair or anything. I just don’t know what I would do if I didn’t use this product. If anyone Reading this has finished chemo and used the digni cap I’m curious how your hair is holding up and if any hair has grown back.

Dx 9/3/2019, IDC, Left, 1cm, Grade 3, ER+/PR+, HER2- Surgery 9/16/2019 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 10/23/2019 AC + T (Taxol)
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Mar 1, 2020 03:24PM - edited Mar 1, 2020 03:28PM by seawell

Cynd724......

I used Dignicap thru 4 doses of TC last summer. Today, I'm at 6 months post last chemo. Shedding stopped at 4 months. I lightly hi-lighted my hair about 6 weeks ago. All is well and new hair is growing like crazy. 2" long on the top of my head right now. My hair thinned pretty evenly all over my head....with no bald spots. Most thinning occurred on the top of my head and sides (I'm a side sleeper)

I'm still pretty gentle with my hair just out of habit. Dignicap recommends waiting until shedding stops then slowly incorporating heat, coloring, washing, chemicals, etc to see how your hair responds.

Dx 3/2019, ILC, Right, 1cm, Stage IA, 0/2 nodes, ER+, HER2- Hormonal Therapy Femara (letrozole) Radiation Therapy Whole-breast: Breast Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery Lumpectomy: Right
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Mar 1, 2020 03:33PM morrigan_2575 wrote:

@Cynd - I'm only on treatment #2 so I'm just getting to the major shedding phase. Right now its top of my hair (along the part).

I looked at the dignicap website all they said was no dyes or perms and to keep the gentle treatment after Chemo until shedding returns to normal levels.

I can't find anything on toppix but, hope it's use able as I'm going to look like Cruella DeVille by the time I can dye my hair again 😁

Dx 1/20/2020, DCIS/IDC, Right, 4cm, Stage IA, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 2/4/2020 Perjeta (pertuzumab) Targeted Therapy 2/4/2020 Herceptin (trastuzumab) Chemotherapy 2/4/2020 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Mar 1, 2020 04:25PM seawell wrote:

Just FYI, the nice people at Dignicap are very helpful....you can call them or email them directly and see what they say about Toppik.
Dx 3/2019, ILC, Right, 1cm, Stage IA, 0/2 nodes, ER+, HER2- Hormonal Therapy Femara (letrozole) Radiation Therapy Whole-breast: Breast Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery Lumpectomy: Right
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Mar 1, 2020 04:54PM morrigan_2575 wrote:

thanks Seawell!

Dx 1/20/2020, DCIS/IDC, Right, 4cm, Stage IA, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 2/4/2020 Perjeta (pertuzumab) Targeted Therapy 2/4/2020 Herceptin (trastuzumab) Chemotherapy 2/4/2020 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Mar 4, 2020 06:30AM morrigan_2575 wrote:

I was reading up on dignicap/cold caps, there was a recommendation to use Coconut Oil to help keep nutrients but, it never said how often or a recommended product. If you used Coconut Oil during chemotherapy/cold cap can you recommend a product and how often?

Dx 1/20/2020, DCIS/IDC, Right, 4cm, Stage IA, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 2/4/2020 Perjeta (pertuzumab) Targeted Therapy 2/4/2020 Herceptin (trastuzumab) Chemotherapy 2/4/2020 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Mar 4, 2020 08:44PM seawell wrote:

I used coconut oil topically (dipped with a q tip) on some small very dry flaky patches along my hairline while cold capping. It works well if you can deal with oily hair when you are only washing 2 times a week. Someone on this site mixed Toppik and oil and it was a disaster so probably best to avoid that.



Dx 3/2019, ILC, Right, 1cm, Stage IA, 0/2 nodes, ER+, HER2- Hormonal Therapy Femara (letrozole) Radiation Therapy Whole-breast: Breast Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery Lumpectomy: Right
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Mar 4, 2020 11:07PM Cynd724 wrote:

Thanks Seawell. So 2 inches after 6 months. Glad to hear it’s growing back fast now. I guess I need to be patient. I’m so happy I didn’t lose all my hair but it’s so thin right now and I’m not sure what to do with it. I don’t want to wear a wig but maybe a clip on hair piece or something. Thanks for sharing your picture

Dx 9/3/2019, IDC, Left, 1cm, Grade 3, ER+/PR+, HER2- Surgery 9/16/2019 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 10/23/2019 AC + T (Taxol)
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Mar 5, 2020 12:00AM cutiekate wrote:

My oncologist said cold cap is not working for my TAC chemo regimen, she told me to just get wig.

Dx 1/10/2020, IDC, Right, 2cm, Stage IIB, Grade 2, 1/8 nodes, ER+/PR+, HER2- (FISH) Surgery 2/19/2020 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 3/18/2020 TAC
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Mar 5, 2020 12:56AM morrigan_2575 wrote:

thanks seawell

Dx 1/20/2020, DCIS/IDC, Right, 4cm, Stage IA, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 2/4/2020 Perjeta (pertuzumab) Targeted Therapy 2/4/2020 Herceptin (trastuzumab) Chemotherapy 2/4/2020 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Mar 5, 2020 05:52AM lifeb4me wrote:

Lost my long post but I'm a nutshell I use Jet hair, not toppik because found it was more gentle than others and website says it's ok to use while cold capping. I also took the advice from someone on this thread and when shedding got very bad, I started using hair in loose braid 24/7 and it got better. I also took the advice to wash less and it also worked. I have lost about 50% of my hair but with the powder it's not noticeable to others. I only wash my hair now when I have to, one day before cold capping and 3 days after chemo. It looks much better than I imagined. I use their spray to fix in the powder because it has less chemicals and regular spray on the braid to keep it tidy. It working for me.





Dx 8/29/2016, IDC, Left, 6cm+, Stage IIIA, Grade 3, 0/6 nodes, ER-/PR-, HER2+ (FISH) Chemotherapy 9/16/2016 AC + T (Taxol) Targeted Therapy 12/6/2016 Herceptin (trastuzumab) Targeted Therapy 12/6/2016 Perjeta (pertuzumab) Surgery 3/8/2017 Lumpectomy: Left; Lymph node removal: Sentinel Dx 12/5/2019, IDC, Left, 5cm, Stage IIIA, Grade 3, ER-/PR-, HER2- (IHC) Chemotherapy 12/17/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Chemotherapy Xeloda (capecitabine) Chemotherapy Chemotherapy Radiation Therapy 3DCRT: Breast, Chest wall
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Mar 5, 2020 09:17AM - edited Mar 5, 2020 10:10AM by morrigan_2575

That looks great! So we can do this while cold capping? I would only look at it for a part I want to go to end of April. Was thinking of buying a hat to cover the Greys and hair thinning but, maybe I'll give this a try.

I will email dignicap to check with them

ETA:

The reply i got from dignicap was to stay away from harsh chemicals and dyes and they recommended this website, for chemo hair safe products, they have a product similar to Toppik

https://chemohairandskin.com/collections/restoring-hair-fibers/products/instant-restoring-hair-fibers?variant=31908442603651

I also looked at Toppik's website and they had this message for Breast Cancer Awareness

https://www.toppik.com/hairtoppiksblog/breast-cancer-awareness-month/

"• If your hair thins during treatment but does not completely fall out, try Hair Building Fibers to fill in any sparse areas. Hair Building Fibers can either be sprinkled on the hair directly from the container, or applied with the Spray Applicator. Finish with FiberHold Spray for durability and shine."

It sounds like Hair Building Fibers are ok as long as they don't have harsh chemicals. I won't bother with it until End of April when i attend a Communion Party


Dx 1/20/2020, DCIS/IDC, Right, 4cm, Stage IA, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 2/4/2020 Perjeta (pertuzumab) Targeted Therapy 2/4/2020 Herceptin (trastuzumab) Chemotherapy 2/4/2020 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Mar 5, 2020 02:17PM Cynd724 wrote:

CuteKate, did you start the cold cap yet? Just wondering if your doctor said that before you even tried it. I know someone who was told it would not work with the ACT treatment so she didn’t try the cold cap. I had the same treatment and it worked for me (Digni cap).

Dx 9/3/2019, IDC, Left, 1cm, Grade 3, ER+/PR+, HER2- Surgery 9/16/2019 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 10/23/2019 AC + T (Taxol)
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Mar 5, 2020 02:48PM morrigan_2575 wrote:

One of the MOs i went to said Cold Caps don't work with AC-T.

Dx 1/20/2020, DCIS/IDC, Right, 4cm, Stage IA, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 2/4/2020 Perjeta (pertuzumab) Targeted Therapy 2/4/2020 Herceptin (trastuzumab) Chemotherapy 2/4/2020 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Mar 5, 2020 08:51PM seawell wrote:

Cutiekate....I thought I saw someone mention they were on your same treatment as you......are you going to stop cold capping?
Dx 3/2019, ILC, Right, 1cm, Stage IA, 0/2 nodes, ER+, HER2- Hormonal Therapy Femara (letrozole) Radiation Therapy Whole-breast: Breast Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery Lumpectomy: Right
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Mar 6, 2020 01:47AM - edited Mar 6, 2020 01:50AM by cutiekate

No, I did not get the cold cap. I will start my chemotherapy in 2 weeks. My oncologist at Cedars-Sinai told me that it would not work with TAC regimen. She has several patients who tried it and they ended up losing all of their hair anyway. She told me to just shave my hair and get a wig.

It cost $450/session to do DigniCap at Cedars-Sinai plus $250 delta kit fee. Total is $2,950 for 6 courses.

Dx 1/10/2020, IDC, Right, 2cm, Stage IIB, Grade 2, 1/8 nodes, ER+/PR+, HER2- (FISH) Surgery 2/19/2020 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 3/18/2020 TAC
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Mar 7, 2020 02:42PM kdrake1007 wrote:

@cutiekate,

Everyone is different and Dignicap/cold capping works differently for everyone, even those who have the same regimen of therapy. I had AC-T and lost quite a bit of hair. A good friend had AC-T and another regimen with a recent recurrence, used Dignicap both times and had phenomenal results.

My original oncologist said the same thing yours did. I switched oncologists a week before I was supposed to start chemo. It was the best decision for me! Love my current oncologist!! I had already bought 2 wigs and shed many tears at the thought of losing my hair.

You have to decide what's right for you after examining all your options.

Good luck!

Kim


Dx 3/15/2018, IDC: Tubular, Right, 1cm, Stage IIIA, Grade 3, 4/21 nodes, ER+/PR+, HER2- (IHC) Surgery 4/16/2018 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 4/25/2018 Lymph node removal: Underarm/Axillary Chemotherapy 5/31/2018 AC + T (Taxol) Radiation Therapy 11/14/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy 1/8/2019 Arimidex (anastrozole) Targeted Therapy 1/30/2019 Verzenio
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Mar 26, 2020 12:14AM ysw63 wrote:

I'm wondering for those who have cold capped did you comb or brush your hair daily or run your fingers through your hair to get the loose hair out? I've been doing that when I get up in the morning and at the end of the day before I go to bed so that I'm not shedding my shoulder length hair all over the house or onto my pillow at night. I have a lot of thick hair and I'm getting handfuls of hair.

Dx 1/6/2020, ILC/IDC, Left, 1cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR-, HER2- (IHC) Surgery 1/30/2020 Lumpectomy; Lymph node removal: Sentinel Chemotherapy 3/3/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Mar 26, 2020 04:29AM Anotherone wrote:

no I was not. I had it in a scrunchie so as for it not to get tangled or lost. I was re-doing it daily. Mind, I should have probably combed it before shower because I had terrible matting after shower twice and lost a lot of hair as a result.

Primary in 2006, metastasis 2019. Sorry can lot log in diagnosis and treatment info properly - it gets jumbled. Dx 10/10/2006, IDC, Left, Stage IIIC, metastasized to lungs, Grade 3, 4/9 nodes, ER-/PR-, HER2+ Dx 7/1/2019, IDC, Stage IV, metastasized to lungs Chemotherapy 9/17/2019 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy Herceptin (trastuzumab) Radiation Therapy External: Chest wall Surgery Lymph node removal: Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Tissue expander placement
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Mar 26, 2020 05:58AM morrigan_2575 wrote:

i run my fingers through it, especially the back to make sure it doesn't tangle. I comb my hair once/week when I washed it.

3 of 6 treatments completed, 8 if 18 weeks and I still have 85% (estimating) of my hair. The loss is around the part down the middle and, in the front over the forehead.

It's all easily covered up but, I don't leave the house except for the Dr so it doesn't really matter much.

So far I'm pleased with the results. I'll let you know how it looks further into treatment.

Dx 1/20/2020, DCIS/IDC, Right, 4cm, Stage IA, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 2/4/2020 Perjeta (pertuzumab) Targeted Therapy 2/4/2020 Herceptin (trastuzumab) Chemotherapy 2/4/2020 Carboplatin (Paraplatin), Taxotere (docetaxel)

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