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All TopicsForum: Managing Side Effects of Breast Cancer and Its Treatment → Topic: Cold Cap Users Past and Present, to Save Hair

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 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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Sep 9, 2017 09:24AM - edited Sep 9, 2017 09:26AM by Vivianlu8

My best tip is not comb your hair everyday only before you wash it to detangle and after, and you wear a ponytail. Everyday you can put a little water with your hands to hide the freezing. That way you are not going to loose so much hair except every washing. Keep on going it is worth it. I had 5 and one more i lost alot because i didn't detangle it before washing and i had to cut the detangled hair that was half of my hair. This was the 21 day after the first chemo, the big shedding. Now with the ponytail nobody notice i have little hair and at my work they don't even know i had this BC. I bought the halo extensions to wear it sometimes when i go out. And for later on if i continue shedding and loosing hair after the last chemo.

Good luck you can do it.

Dx 3/14/2017, IDC, Right, 2cm, Grade 3, 0/4 nodes, ER+/PR+, HER2- Surgery 4/6/2017 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 6/7/2017 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Sep 9, 2017 05:19PM - edited Sep 9, 2017 05:25PM by Elberama

I am down to my last wisps of my chin-length original haircut, but much more of the undergrowth is appearing. I can still pull back the wisps into the tiniest of ponytails, like the kind you put on a toddler who is just starting to grow her hair. It does the trick to not look like the hair is so thin. It is a big ol' mess, but anything to maintain my privacy is worth it to me. I'm sure people have questions in their minds about why my hair is so bad/weird/strange, but without knowing my diagnosis, I haven't seen people stare, scrutinize, or make comments to ask. I can imagine people asking much more if they knew I were in cancer treatment.

Keeping my hair is not about vanity. For me, it allows me to take the lead on how I get to proceed on this journey, as opposed to having the world at large dictate that for me. It allows me to choose when to talk about my cancer. I get to be selfish. I get to bring it up on my terms, to people I choose. I don't want to put my life on pause for these treatments. Putting my Fridays on pause for 16 chemo treatments, then surgery, then recovery, then radiation, then reconstructive surgery, is enough of a disruption. I don't need any more intrusion to my life that is caused by my cancer.

My goal is to minimize the cancer's disruption on my life by the minute. If all the doctors are telling me that I have a good chance of surviving it and not to worry, then darn it, I'm not going to worry, and most importantly, I'm not going to let the world drag down my spirits by having people asking at every encounter about how I'm doing with my treatment, even if they mean well. I see it as a version of being smothered with love. Sometimes, especially on days when I'm feeling totally normal, rested, and totally free of side effects, I just want my day to proceed normally without having to talk about cancer to someone from work or from my kid's school who I hardly know! Words of encouragement are still a reminder of cancer that brings me away from the normality that I'm trying to maintain.

Every minute that I spend unnecessarily talking about cancer when I don't want to talk about cancer is a minute of my life I'll never get back. The good thing about my inner-circle knowing that I am not "out" about the diagnosis is that they don't bring it up unless we're alone. Otherwise, I can imagine every group gathering turning to a discussion about cancer. I went to a Labor Day party this weekend where only one family knew, and of course no one brought it up. It was bliss to enjoy the party and not talk about cancer.

I am down to my last 3 of Taxol weekly. After AC, I was dreading so much capping for the 12 Taxol, but it isn't so bad. My husband have a developing routine of getting take-out sushi for lunch at our favorite sushi place near the treatment center, changing a cap before we leave the treatment center, calling in our order on our way to the restaurant, changing a cap right before we pick up the sushi, getting to a friend's house who is away during the day and in the same neighborhood before the next cap change, and having our sushi date there for the remainder of the capping time (we live too far away; going to the friend's house works out better for us). By the time we do all the driving here and there, and having the meal, it eats up a good amount of the extra 4 hours after the infusion that I'm required to cap. It's a good way to find something enjoyable to do during the extra capping time.

Radmonkey - Congratulations on your final chemo! I'm glad that my posting pictures of my hair camouflage tips were helpful.

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 5/11/2017 AC + T (Taxol) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Surgery Lymph node removal: Underarm/Axillary; Mastectomy: Left
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Sep 10, 2017 09:55AM Brightness456 wrote:

Hi ladies. Hanging in there, I'm sorry if I misread your post. I'm a nervous wreck these days, so please just ignore me. :)

My update: I met with a local lady who used PCC. She was lovely and so reassuring. Her hair looked fabulous, but she's out about 6 months now if I recall correctly. Also, it looks like I'll have 2 helpers! I am hoping we can all be there for the first treatment or two, then maybe if we're feeling more confident, they can alternate to accommodate their lives. Asking for help isn't easy for me, but I'm pushing past all kinds of comfort zones now.

My nurse navigator is so kind too. She is going to review my situation with the nurses since apparently no one at the facility has done cold capping before. I feel fortunate to have her in my corner.

I'm going to watch videos and take notes today. This week is crazy busy with multiple obligations so if I can just make it through this week, I feel like next week might be easier.

I truly appreciate all the help and advice and reassurance I'm receiving here. I'm looking forward to being through this and able to pay back all the kindness I'm receiving

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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Sep 10, 2017 12:11PM Pambc010417 wrote:

I'm not a journalist at all! In fact I hate to write. Give me numbers and I love to calculate!

I wish we could document all of our collective Cold Cap tips in one document. It is hard to read through all of the threads in this community forum to sort out all of the tips. I think the document would be very valuable for future cold cap users. Is there anyone who would want to start putting a word document together? I would be glad to contribute to the content and proof read.

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 9/1/2017 Arimidex (anastrozole)
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Sep 10, 2017 02:53PM Travel_Girl wrote:

Brightness, a pioneer! I truly hope that you are able to give back when you get through this in your local center.

Question

I am doing Dignicaps (as at my local center). The Digni literature says the big shed comes days 18-21. Today is day 18 for me, I am definitely shedding, trying NOT to panic, I knew it would happen and I am committed to doing it whatever the outcome - as I am on taxotere and do want to risk the 6% potential perm loss.

The one question I have for other dignis is users -- Digni says big shed is days 18-21 and to not wash your hair during this time -- the issue is .. it also says wash your hair day of chemo. For me, this time, that is day 21. I pulled my chemo in by one day, so I could have it on Wed vs. Thur, thinking that would give me the weekend to rest.

Thoughts? Better to wash it and get the benefit of not having build up and grease OR go with the build up and not the shedding. Whats a girl to do! Any tips appreciated.

Pam - ditto on the numbers for me, not a great writer. I would be happy to contribute -- if one gets started. I know for me,I spent hours and hours researching, so I would have probably read through this thread anyway - earlier in the process.

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Sep 10, 2017 06:16PM BBwithBC45 wrote:

Pambc010417 - a while ago Dancetrancer put together a topic with a lot of details explained. It's just it is not active, since everyone posts in this thread - so it is difficult to keep it at the top of topics.

Cold Caps FAQ's - newbies - how to save your hair from chemo


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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Sep 11, 2017 11:36AM Mari- wrote:

I can't believe I have not been posting in a while! I finished my cycle 4xTC

I would do cold capping again, but with Penguin. For me it was too late when I learned about PCC. I did artic cold caps and my results were not great. I have hair so thin and a large bold spot. So I am Hoping for fast growth. Will see! It's been only two weeks so for now it's only waiting. I still have lashes, thin eyebrows!

For the ones starting just know, Artic cold caps uses elastogel caps and charges about the same price as PCC.

Dx 9/20/2012, IDC, Right, <1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 11/18/2012 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Sep 11, 2017 04:13PM GoKale4320 wrote:

Is there an easy way to post pics? I take pics with my phone, email them from my phone to my email, pull up the email on my PC, open the pic and save to my desktop. Then when I post, I try to search my desktop for my pics. Anything easier?

Also, I just changed my biography thinking it would show up in my signature, but I don't think it works.

Having a tech-challange day!


Dx: January 2017, IDC, Stage IIa, 1/23 nodes,
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Sep 11, 2017 04:17PM - edited Sep 11, 2017 04:17PM by GoKale4320

Okay, tried the signature thing again. This is a test. Didn't really work, oh well

Dx: January 2017, IDC, Stage IIa, 1/23 nodes,
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Sep 11, 2017 05:22PM Elberama wrote:

GoKale4320: I post directly from my phone. I use the Chrome browser on my Android Sony phone, but I'm sure it will work on iPhone. I go to

https://community.breastcancer.org/forum/6/topics/...

and scroll to the bottom where there's a text box. I do have to type the message on my phone, which can be a pain. There's a button for adding pictures, just like on the computer.


Speaking of which, it's washing day again. Here's what's left, compared with last month. I have 3 more Taxol treatments left, after 4 AC and 9 of 12 Taxol. It looks like the new growth is keeping pace with the hair loss. I'm swapping long hairs for short hair. I might need to go in for a haircut even before my final chemo.


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 5/11/2017 AC + T (Taxol) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Surgery Lymph node removal: Underarm/Axillary; Mastectomy: Left
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Sep 11, 2017 10:09PM Travel_Girl wrote:

mari - congrats on finishing!! How did it work out for you? (the capping that is) .

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Sep 12, 2017 12:17AM Summer2016 wrote:

TravelGirl----I used Dignicap. I washed before chemo regardless of the timing of my shedding. My worst battle was sweating from chemo at night as it caused a large amount of matting on the back of my head. This lead to me losing large chunks in the back even though I had a satin pillow case.----Wish I had used ice packs wrapped in towels to keep my head cool during the night.

-----wishing all of us wellness always

Dx 8/14/2016, IDC, Right, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 9/13/2016 Lymph node removal: Sentinel; Mastectomy: Left, Right Chemotherapy 12/8/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 4/1/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 12, 2017 01:38AM Elberama wrote:

Hanging_in_there: Saw your pictures on the other thread. I'd say your Penguin caps experience with AC+T was quite successful! Glad to know it does work out for some. PCC kept me from being bald, but it certainly did not let me keep my hairstyle since the long hairs are nearly all gone. I'll have to go pixie post final chemo.

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 5/11/2017 AC + T (Taxol) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Surgery Lymph node removal: Underarm/Axillary; Mastectomy: Left
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Sep 12, 2017 04:25AM Brightness456 wrote:

I met with some of the nurses at my facility yesterday. They all seemed nice and were curious about the process. Some indicated they were familiar with the process from places they'd worked in the past and I got the feeling it was actually more common years ago.

Today I take the caps out of the freezer to dry and come to room temperature.

I spoke with the local dry ice supplier and they only offer pellets, not slabs. Do I put the pellets in gallon size baggies? Will they be harder or easier to work with? Also, I have 4 caps and I'll be picking the ice up around 4 in the afternoon tomorrow, but won't start precooling until 9 the following morning. Does that mean I need around 50-55 lbs?

The directions are confusing to me, which could be because I'm just worn down by now and when I reach out to geralyn at PCC, I get a call from someone else who doesn't make me feel confident. It feels like she's reading from her list of notes rather than actually knowing the answers to my questions. I know we all have to start somewhere at a new job, but this is a lot of money and effort and I need to trust the people advising me. I have more confidence in all of you.

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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Sep 12, 2017 06:30AM kaylie57410 wrote:

hi to you--the pellets are easier than the slab to work with==have the ice company load into 2.5 gallon hefty ziplock bags-- you provide those-leave an end of bags open so gas can get out- I used 4 bags /5 bags--dont over fill you want bags to lie flat under and over the caps which go in at intervals- 50 pounds sounds about right- you can return -or I could what I didnt use and get a refund= you will get the hang of it pretty quickly- you take caps out from the bottom in rotation--- I numbered the bags 1-4 and also the bands which go on top--used the gel bands after the black straps as pulls in your nape and temple areas- common place to lose hair if not tight to scalp-I also pressed down on the caps in those areas when on head. only test temp on inner body of cap not all over----it is a long 7/8 hours- gets grueling/tiring towards the end---- I wrote out a a schedule for when the caps had to change and checked off as I went along- keeping track of the the post infusion 4 hours-for me ,- I needed to keep capping-but- I am 26 days post first TC and 5 days post 2nd infusion--this protocol has a high success rate--no adriamycins which is tuffer on hair--I still have all my hair--have had only minor shedding since about day 20--some shed quite a bit- this is normal- is old hair coming out--capping protects the younger follicles--keep going even if you start to lose some hair- it will help what comes out grow back faster-keep us posted-the first time is hardest but you quickly will get into the routine of it- the time goes by fast as you are busy- and have to take the next cap out 10 minutes ahead to knead and get to right temp- they warm up pretty quickly-is why the frequnetly needed changes- keep posting here=are here to help! Oh =ps you didnt say if you have a port- I dont -only 4 treatments and I have great veins- but if you need iv-have it put in forearm so does'nt interferr with your hand and wrist movements as you help with the capping, nor get caught on the velcro tabs--you can do this--really -s just a learning curve to master----best-Kaylie

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Sep 12, 2017 07:41AM Travel_Girl wrote:

summer2016 - thanks for the response. I bought a ice pillow and haven't started using it yet -- that is a good reminder to pull that out - I have been turning up the air conditioner at night, not quite doing the trick.

My hair is thin/fine on a good day, so I haven't had the matting problem (yet) -- and fortunately I have had extensions in the past - so I know what it means to treat your hair very very nice. I feel like I am in slow motion when doing anything to my hair.

I will go for the washing, which is what I was leaning toward.

I am also happy to report that after ordering 4 different root touch ups for my blondish hair (my hair is light brown/blonde bayalage usually) - I found one that matched better and has a more natural look.

I am using it for root touch ups and some 'body' - mostly root touch ups. When I am not in this state, I was an every 3 week root touch up person.

For anyone interested -- it is made by Keratherapy -- KERATIN INFUSED - Perfect Blonde Match - it is lighter than Bumble and Bumble Blonde and not the yellow blonde of Bastita - for me -- a much better match and I like the way it feels, a bit less sticky, natural. I am soooo thankful for on-line ordering that allowed me to find and order several brands when I realized part of what I didn't like about my hair was the darker roots - it was the light brown color I had been using.

I ordered my first Keratherapy blonde from Amazon and I had to go direct to the website for additional orders. The best part is that it is 3oz container, so when all this is over and I am back to my normal jet setting, it is small enough for carry on size -- success all the way around.

Happy capping and I wish everyone good health.



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Sep 12, 2017 07:43AM Brightness456 wrote:

Hi Kaylie, thanks for responding so quickly. I do have a port. It was placed yesterday and goodness, it hurts this morning. There's not really any fat in that spot and I suppose jamming that thing in there pulled a lot of skin up.

I'm off and running with errands and appointments now, but I'll read over your advice closer later. For now, buy 2.5 gallon hefty ziplock bags,,,

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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Sep 12, 2017 08:06AM kaylie57410 wrote:

I couldnt stand my roots showing-so very carefully used a wide flat 1 inch paint brush to gently paint on my usual box color just along the part without getting on my scalp-and left on for only 15 minutes rather than usual 35 and then gently wasned out with tepid water flowing over my head-did just enough to help disguise and helped me feel /look better/ My hair continues to grow with the capping--yea!!

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Sep 12, 2017 08:21AM Travel_Girl wrote:

Kaylie - I am not that brave ! However, I am looking at my increased grey roots as my hair growing as well and somehow it makes me happy :).

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Sep 13, 2017 11:40AM Mari- wrote:

how did it work for me!?

As much as I hate it, I got a compliment the other day that I look cute in short hair!

With that been said, lots of thining and a huge bold spot on top of my head. It happened like after first tc treatment, and then got bigger. To add to that lots of grey!

I tried the wig, but can't! So I wear a scarve lots of toppik and a touch up brown spray from Sally's. The scarve covers the bold spot, so supposedly it's not noticeable.

I would do it again, I would do PCC instead of artic caps though. I spoke with my RO and he is ok with me using Rogain for men and latisse for lashes during radiation! No viviscal or other supplements.I know will grow back but I want it faster! So will keep you posted! Will be getting latisse today!!


Dx 9/20/2012, IDC, Right, <1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 11/18/2012 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Sep 13, 2017 11:54AM Brightness456 wrote:

Ok ladies, another question. My chemo is at 10, so I'll start precooling at 9:10. What time should I put the PCC in the cooler? I called my rep and it says the call can't go through and the directions are getting confusing, which may be because I'm overwhelmed and worn out.

Thanks yet again

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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Sep 13, 2017 12:00PM Travel_Girl wrote:

Mari -- I thought the baseball hats w/ hair on headcoverings dot com looked cute. I generally like real hair versus synthetic hair, however, was thinking about ordering one for a quick throw on for errands, they get good reviews -- I like wearing hats anyway -- and they look less of a production for quick errands. They allow you one exchange for color, I asked them.

Today is #2 on TC for Digni - i have some shedding so far -- so we will see, i was looking at the hats/hair -- because I am only washing my hair once a week and have pretty much bed head -- i thought the hats could be used for short periods - errands and i might like it - haven't pulled the trigger yet

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Sep 13, 2017 12:23PM toughcookie_21 wrote:

brightness, I'm not using pcc, I'm using chemo cold caps. I was told to put the caps in 3 hours before capping starts. But chemo cold caps recommends that they go in at room temp. I believe pcc has you freeze them first. Good luck today! You got this.

Travel Girl- I am right behind you with my second TC treatment being on sept. 26. I haven't had the big shed yet. When did you start shedding significantly?

42 years old at diagnosis 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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Sep 13, 2017 12:48PM Brightness456 wrote:

I sent an email since I couldn't get through by phone. She responded right away. I know it's different for each person depending on their treatment regimen and personal traits etc.. For me, I put the caps in the cooler 50 minutes before my premeds start, which is 10 minutes before I start precooling. It doesn't sound like much time, but I suppose since it's dry ice, it will cool really fast.

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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Sep 13, 2017 12:59PM - edited Sep 13, 2017 05:02PM by kaylie57410

I have done 2 infusions of TC with PCC-which claim that the TC protocol is one of the highest success rates--am 27 days out from 1st and 6 days from 2nd and have not lost any hair-other than some breakage on top in a tiny area from freezer burn- cause few caps went on too cold like -42/44 degrees. was more careful 2nd time taking next caps out of ice to have enough time to warm it to the -32 range recommended. hair growing back in-- also about day 20 started with minimal shedding not much more than normal daily shedding that has remained consistent-the other things I did was to press down on the top and temples of the caps with gloved hands when on to keep tight to scalp and used the gelbands to keep nape tight in and they wrapped across the forehead line of the cap- have not lost eyebrows or lashes either- wondering if the gelbands across forehead helped that?

I have no hair now on my legs or underarms-ok by me--

I understand the advice is to keep capping even if hair falling out cause it will help it grow back in faster by adding protection the the follicles

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Sep 13, 2017 01:13PM GoKale4320 wrote:

I am 20 weeks PFC. These pics are with no Toppik on (doesn't really hide the gray so I stopped using it).

Dx: January 2017, IDC, Stage IIa, 1/23 nodes,
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Sep 13, 2017 01:17PM GoKale4320 wrote:

thank you , Elberama, for the picture help

Dx: January 2017, IDC, Stage IIa, 1/23 nodes,
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Sep 13, 2017 01:28PM kaylie57410 wrote:

ok, getting the timing right takes some practice---I would start putting the caps in every 15/20 minutes when you check in at reception =one at a time starting them at the bottom=pay attention to the diagram you got about how to pack in the ice.Gel bands go on top of top ice. As soon as your nurse comes to get you to your room find out how long the premeds will take to go in and whether there is a wait to have them circulate till the actual chemo can start--ie-- for me, the 4 premeds went in one at a time from 2-2:15p-there then a wait of 1 hour-60 minutes till the first chemo med could start--so that meant 3:15-so back up 50 minutes from that 3:15 and started first cap on at 2:25--20 minutes for that one---second one on at 2;45 for 20minutes---at 3:05- cap 3 goes on --after 10 minutes of that it will be 3:15--chemo can start and that cap stays on for full 25 minutes and so do subsequent caps right till the end of your 4/5 hours post infusion- dont start that 4/5 hours post countdown until chemo finishes infusing--

take each cap out 5-10 minutes before applying and check temp on inner white body of cap only ,not all over. if too cold knead it with your gloved hands and keep checking temp-is why an infrared so easy to use- reading is instantaneous where the one sent to you by penguin takes 45 seconds,

You will get an ice cream headache for 5-10 minutes from first couple caps--just put up with it- it will ease as your scalp nerves adjust and not be bad to tolerate thru the others

I dressed in layers-long undershirt under loose sweater and thin leggings under loose pants with thin socks- I was not cold-didnt ice hands or feet- hands cold enough from handling caps=lol and have had no neuropathy issues=small potatoes compared to losing my hair anyway--I was never cold- you are busy helping so time flies--

After the first few changes you will get the hang of it and just keep going--how far do you lived from the infusion center? we change caps just as we were going out door and able to just get home in time to change to next one- we took it out in car as we were approaching home,otherwise you have to stop somewhere on way home and change by the car--fun--not!!

Let us know how it goes--hugs- you can do this --I did and was as confused as you at first==it will be worth it!!


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Sep 13, 2017 01:46PM - edited Sep 13, 2017 06:28PM by Travel_Girl

GoKale - you look great! For the gray coverage -- I use the gray root coverage spray -I posed above the blond spray I like. Thanks for sharing. What an inspiration!! you put your pix on the cold cap picture only group -- it would be great for others.

My shedding started like day 19/20 -- it is not significant in my mind, just strays of hair -- which I was expecting per all the literature, so not panicking. My hair is fine anyway. So thin hair is my normal. For some reason I think the PCC caps work the best -- no personal evidence, just all the research I have done.

I started with Digni and it was at my local place and the repunzel project said digna and pcc had the same success rate w/ taxanes (TC falls in that category) - so went with it. I just think the pcc's being colder and the longer cooling time might be the trick. But who really knows!

I just hope I fair as well as you have and if not, I have a plan B in place to get micro extensions or an interlace system - from the lucinda project that I also found on repunzel links. I have no regrets so far. No one that I don't want to tell knows I am going through chemo - that helps a ton!



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Sep 13, 2017 01:57PM toughcookie_21 wrote:

gokale, I think you look great and I like the color. My hair is naturally dark reddish brown and my gray roots are very obvious. I have a lot of gray and usually had my roots colored every 3 weeks. When I knew that chemo was inevitable, I got 14 inches cut off my hair and had it lightened so that the roots wouldn't be so different. That was back in early July so it was a good 8 weeks before I started chemo. I hope I have as good of results as you do!

42 years old at diagnosis 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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