We are 196,395 members in 81 forums discussing 144,725 topics.

Help with Abbreviations

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 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-
Log in to post a reply

Page 620 of 656 (19,659 results)

Posts 18571 - 18600 (19,659 total)

Log in to post a reply

May 18, 2017 06:04AM - edited May 18, 2017 06:07AM by GoKale4320

Thanks, ladies for the kind comments on my pics. I forgot to point out that I did not start off with a thick head of hair - I wore it shoulder length to help with the fullness. So if anyone down the road has a similar head of hair and wonders if they should cold cap, they can see my pics and decide. I did it because of the Taxotere. If I had been on a less intense drug, I might have skipped the cold cap.

Elastogelgirl - love the visor pics! You are creative with your head coverings. But I think you are regrowing a nice head of hair.

Hanging In - I, too, am checking for other body hair - any sign of life, so to speak. Hooray on the eye brows and lashes.

Hopfull - thanks for the suggestion. I decided a while back that I would be satisfied with a cute short hair style when my hair gets stronger. Maybe something that will grow back nicely.

Mquara - Regarding the babying of the hair - I agree; I am tired of it. I never dreamed it would be this much work. I do love the Toppik powder. It is so easy to use and I look much better with it. Hang in there. Someone said it won't take as long as you think for your hair to grow and for you to be happy with it. I agree. Based on what a handful of recent posters have said and who have done similar drug regimens, I am hopeful that I am just a few months away from great improvement. I try to distract myself with reading and sports on tv and just normal conversations with friends and family. It's just easier not to think about my hair.

Fastgirl - so cool that we finished the same time. Were you on TC like me?

SoniaL- I can't advise on the hairspray. But welcome and good luck with everything.

LowCountry - I had to LOL about asking your husband to look for regrowth. That's my husband's job, too. He doesn't love it because he doesn't want to tell me that he doesn't see anything. He's taller than me so he can see it better than me. You and I are nearly on the same schedule with the same drugs.

EmHaich52- Sorry you had so much trouble. Are you drinking lots of fluids days before chemo? Eating breakfast before? Maybe let the cap get a couple degrees warmer?

Take care, everyone!


Dx: January 2017, IDC, Stage IIa, 1/23 nodes,
Log in to post a reply

May 18, 2017 07:16AM - edited May 18, 2017 07:24AM by Elastogelgirl

amapola,

I think you should wait until the shedding calms down before you cut it. I know it's so hard and you want to get on with it. Patience, I did the henna rinse this i was so worried I would have regrets. I only went for it because I stopped shedding way early. Turns out it hardly made a difference color wise. Fortunately I did not lose hair but even though mine looks good in pics there is just not much left up there to lose.

Anyhow I say Stay with the program. I feel that if you are still shedding it is too early to mess with it. Time will fly by and you will know when you hair is back on a track. I so want to color mine but I'm more interested in getting some healthy growth. Can you get by with a silk bandanna?

Hanging in ---so you've stopped shedding yay! That's a milestone. It's hard to see new growth at first but you'll start to notice any bald spots disappear very soon! The new hair is like baby hair on me was whispy and hard to see then boom you have coverage!


Hugs e




Hugs Elastogelgirl Dx 11/4/2016, IDC, Right, 1cm, Stage IIIA, Grade 2, 2/9 nodes, ER+/PR+, HER2- Chemotherapy 11/30/2016 AC + T (Taxol) Surgery 4/19/2017 Lumpectomy: Right; Lymph node removal: Right Radiation Therapy 5/23/2017 Whole-breast: Breast, Lymph nodes Hormonal Therapy 7/20/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

May 18, 2017 06:44PM Cali58 wrote:

Hi everyone! I am new here. I have read your posts and they are very helpful. You are all so sweet. It's sad we all have to go through this mess. I am on 4 cycles of TC. My first infusion was on 4/18/17 and my second one on 6/9/17. I am using Penguin caps. Penguin caps referred me to one of their cap assistants and he has been helping me. He charges $350 per infusion. I thought I was doing everything right, washing my hair twice a week, until day 20 when I washed my hair and shed "big time". Then I washed my hair three days after my second chemo and had a "huge" shed again. I stopped washing my hair since a week ago and I will try to wash once every cycle, 3 days after chemo. I may have made a mistake, but I cut 3 inches of my hair a week ago. I have lost about 50% of my hair so far, mostly during the last two times I washed it. I am afraid I will only have a few strands left when it finally stops shedding. Heavy shedding for me stops two days after I wash my hair. I was wondering how often do you girls wash your hair?

Good luck to all of you, pray for your total health and hope your hair grows back VERY QUIKLY!!!

Log in to post a reply

May 18, 2017 07:28PM MJPow wrote:

emhaich- I too had severe nausea and vomiting I ended up in the ER 3 times through dose dense AC Just looking at the caps made me nauseous.

We tried all kinds of nausea meds and finally on the 4th capping I took one Ativan an hour before which helps with anxiety but also on nausea also a pain med that the doctor prescribed then I took a olazapine during pre meds an also something called amend that's not the right spelling but if you ask your doctor he will know lol. I never made it 4 hours after the first was 3 hours 15 min before I tore off the cap and threw up. The next couple were closer to 2.5. I swear that amend and olazapine were life savers. Even on my taxol I am doing the same as now I have anticipatory nausea which means my body anticipates and I get sickness before chemo.

You can do it make sure you ask for those meds!!

Log in to post a reply

May 18, 2017 07:33PM MJPow wrote:

cali- I washed my hair once a week. My infusions are on Wednesday and I washed on Saturdays I had 2 weeks between infusions so I just washed every Saturday. I was worried all my hair would be gone after day 21 my big shed. It still came out in handfuls for a couple weeks. Just now starting taxol it seems much less thank god!!

Hang in there! I know it's so frustrating and hard. I also braided my hair daily because it got so dry and tangled. It is finally feeling softer on taxol


Log in to post a reply

May 18, 2017 07:33PM Hopfull2 wrote:

hi cali58, I was on the same chemo regiment as you. My last one was 2/23/17. I would wash my my hair 2days before each infusion and on the 3rd day after each infusion per the penguin rules. You mentioned your chemo was 4/18 and the next one is 6/9. Why is it so far apart. I was on TC x 6 every 3weeks. I had my big shed afternoon MTV 2nd treatment and shedding slowed at about 6weeks PFC. Good luck to u and hope you recover through each treatment smoothly.

Hugs.

E🌺37yrs.old/ oncotype score 39 Dx 7/5/2016, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 8/8/2016 Mastectomy: Right Surgery 9/15/2016 Mastectomy Chemotherapy 11/10/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/23/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/9/2017 Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Latissimus dorsi flap, Tissue expander placement
Log in to post a reply

May 18, 2017 11:25PM Cali58 wrote:

MJpow - Glad you are doing better on Taxol. I saw your pictures. You look great. I love your helpers' t-shirts.

Hopful2 - I wish I had known I didn't need to wash my hair so often. Washing my hair like you did would have been much better for me. I made a mistake, my last chemo was on May 9, the third one will be on May 30 and the last one on June 20. I live in the Central Valley/California. It will be extremely hot very soon. I will have to stay indoors to keep my head cool.

Thank you both for your your kind words


Log in to post a reply

May 19, 2017 04:50AM EmHaich52 wrote:

MJPow-- thanks so much for your reply. It is comforting just to know I am not crazy! I will talk with my doctor about starting the anti-nausea meds well before the capping begins. Others have suggested i let the caps be a degree warmer and that I try foam ear plugs. I will let you know if any of this helps.


Log in to post a reply

May 19, 2017 07:57AM MJPow wrote:

emhaich- yes I do all my nausea meds pre capping some people it doesn't seem to make them sick but I was a mess until they gave me those meds. They knock you out a bit and u sleep but better than being sick hah

Log in to post a reply

May 19, 2017 12:47PM - edited May 19, 2017 06:17PM by Pamela23

Hopfull--I had thick hair to begin with so I can't imagine how thin yours must be. My ponytail is half the thickness it was plus the underneath bald patches. I saw a couple pics of me from last year and wanted to cry. Even after the 3rd chemo I had a TON more hair. It sucks but it's my new normal and until I see what it used to be like, I forget because I'm too busy trying to make my stringy, dried out, stiff hair to look decent. I have my daughter's 8th grade graduation on the same day! My lashes are almost the length they were. I have a couple original lashes and the rest haven't caught up to them but they are getting there which makes a HUGE difference in how I feel about my looks.

Go Kale--it's amazing to see the progression of hair thinning but you still look great. The one thing I notice with my hair is how see through it is on the back. Like I can see in my shadow spaces between my hair above my shoulders, because it's not as thick. Does that make sense?

MJ--LOVE the T-shirts!!

Fast Girl--I finally colored with Clairol Nutrisse semi permanent last week. but it merely turned my light grays to dark gray. I'll try a deeper color of the same brand in a couple weeks. Still relying on the L'Oreal spray.


Cali--I had TC. Like Hopfull, I washed 2 days prior to infusion then 3 days after. So Monday and Saturday on infusion weeks. I had the worst sheds when you did so hang in there!! I ended up with a half gallon bag of hair in the end but besides some bald spots on the sides underneath the top I kept, it was from all over and only I could tell by the size of my ponytail. Then I washed every 4 days. It's scary but you have SOMETHING. hang in there!

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
Log in to post a reply

May 19, 2017 08:40PM Vivianlu8 wrote:

Hi girls , one question have you try the fake eyelashes ? I am thinking to buy them when i start losing mine. About viviscal when do you start to use 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 6/6/2017 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
Log in to post a reply

May 19, 2017 09:35PM Hopfull2 wrote:

hi vivian, I never wore fake lashes. Mine are starting to grow back. Not enough yet to put mascara. But I've always made sure to wear black liner on my top lid so my eye dies not look so bald. And as far as viviscal I started about 10weeks PFC. I should have started as soon as I was done with chemo but didn't think about buying it. I would definitely wait until your done with chemo.

E🌺37yrs.old/ oncotype score 39 Dx 7/5/2016, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 8/8/2016 Mastectomy: Right Surgery 9/15/2016 Mastectomy Chemotherapy 11/10/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/23/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/9/2017 Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Latissimus dorsi flap, Tissue expander placement
Log in to post a reply

May 19, 2017 10:59PM Cali58 wrote:

Pamela23 - Your statement is encouraging. I hope that, like it happend to you, my big sheds are over. I am SO afraid of washing my hair again, but I must wash it soon. I have dandruff now. I saw your pictures and I can't wait to be in the stage where you are at. Your hair is looking great, as well as your eyebrows and eyelashes. ThumbsUp

Does anyone have any suggestion on how to get rid of dandruff without having to wash my hair more than twice per cycle? Bawling

Log in to post a reply

May 20, 2017 06:47AM MichCali wrote:

Go Kale-- thanks for sharing your pictures. I didn't take any but your hair looks similar to mine. I'm 8 weeks PFC. I'm starting to see growth on the sides. I wish its wasn't so frizzy, but happy to have hair.

Pamela23--- thanks for sharing your pictures. It's very hopeful and encouraging to see. I saw a picture of myself yesterday and know what you mean about see thru hair on the back. I wish I could add a piece or extensions to it.

MJ--- the t-- shirts are great!!!

Cali58-- I was on TC also, every 3 weeks. I would wash my hair 3 days before chemo, and 3 days after. Then once a week.

I hope everyone has a nice weekend!!


Log in to post a reply

May 20, 2017 08:47AM Pamela23 wrote:

Cali50--Just remember that if the hair follicle died, the hair will fall out of it anyway. Not washing your hair isn't going to prevent that. It may help delay the inevidible but if it's weak, it'll come out during the day on your clothes or when you run a wide tooth comb through it once a day anyway. You don't want build up either. Once every 4-5 days should be fine. Sounds like you are good at babying it. Those big sheds ARE traumatic but it should;t come out in clumps anymore. You'll still get the few combfuls with each washing but those big sheds are horrendous. You are past the worst!!

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
Log in to post a reply

May 20, 2017 10:41AM rdsm wrote:

I am on TC (once every three weeks). I just had my first treatment last week. I have curly hair which I usually straighten. I'm trying to embrace the curls but it's a frizzy mess. Washing it only once a week is going to be a big challenge. Where are the pics that people are referring to?

Log in to post a reply

May 20, 2017 01:25PM ykh wrote:

MJPow, I am on the same regiment as you are, will have my 3rd AC next Wednesday. I washed my hair today and experienced a big shed. When did your shedding start to slow down?

Log in to post a reply

May 20, 2017 01:30PM ykh wrote:

rdsm- I also have curly hair. I use Shu Uemura oil (you can buy it on Amazon). It helps with dryness, frizz. I like it and it smells very good too.

Log in to post a reply

May 20, 2017 06:48PM HapB wrote:

Hello, I have not started chemo treatment yet. I am still awaiting pathology reports from lumpectomy to finalize treatment plan. I had chemo 6 yrs. ago for a colorectal cancer and did mot lose much hair at all, but I know the chemo for BC is different. I am wondering whether anyone has used any scalp cooling sytems with success recently. I know that the Paxman system has just gained FDA approval. I don't know if the hospital has a system or I have to buy my own. Thanks for any info

Dx 4/2017, IDC, Right, 1cm, Stage IA, Grade 2, ER+/PR+, HER2+ (FISH) Surgery 5/10/2017 Lumpectomy: Right Targeted Therapy 6/9/2017 Herceptin (trastuzumab) Hormonal Therapy Radiation Therapy
Log in to post a reply

May 20, 2017 09:22PM PatinMN wrote:

Hi HapB and welcome to the cold cap forum. Lots of people use cold caps successfully, with varying levels of hair retention. I had weekly taxol and Herceptin nearly 5 years ago, and lost almost no hair. It looks like you have a small, triple positive tumor, and that often means weekly taxol and herceptin. Check the Rapunzel Project website for lots of good info and a list of facilities that have medical freezers for the caps, or offer one of the "machine" systems

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
Log in to post a reply

May 21, 2017 05:52AM Radmonkey wrote:

Do you recommend sleeping in a night cap? Any links or suggestions would be great. I have a satin pillow.

Thanks.

Log in to post a reply

May 21, 2017 06:27AM Pamela23 wrote:

Radmonkey-- I didn't use a night cap, just a satin pillowcase which I'm still using 4 months PFC.

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
Log in to post a reply

May 21, 2017 07:51AM - edited May 21, 2017 07:58AM by MJPow

ykh- my shedding started about 25 days after first infusion. The big shed for me lasted about 2 weeks and continued but with less amounts till taxol started. I was so worried I would lose all of it but taxol definitely so far after 2 has slowed it. I still get a brush full but way less!! Hang in there

I did have an issue this last infusion as the nurse did not appreciate me called capping I guess. I have always been very specific from the moment I walk in on the schedule of the capping. I do it for them and me.

Fortunately I have had the same nurses for all of my sessions. This was the first new nurse I had had for a while. I told her I needed two hours after infusion which I know is less and penguin recommends but that's what I do. After about an hour and 15 minutes she told me I needed to leave that there were 20 people waiting for my chair . She had been rude the whole time we were there I won't go into detail on everything just very grumpy. As we were leaving there was not a single person in the waiting room and plenty of chairs for me to finish my capping so that I wouldn't have to do it in the car .

I did send an email and got a response that they apologized they wanted to work with called cappers. They said they had 20 people waiting for my chair which is so untrue because it was late in the day and there was not a single person in the waiting room. They promised me I could stay with my original two nurses that I have had since the beginning.


Log in to post a reply

May 21, 2017 07:58AM rdsm wrote:

I'm using a satin pillow case but find it hot. Wondering if a silk pillowcase would be any cooler? Or maybe i need a different pillow instead of the down filled one I have?

Log in to post a reply

May 21, 2017 10:02AM Cali58 wrote:

Pamela23 - You are right. I will shed the same regardless of how often I wash my hair. I need to wash it every 5 to 7 days, which still is a lot for me. Before chemo, i washed it every day or every other day. Today is day 13 after second infusion and I have been shedding quite a bit more than I was for the last 10 days. I started with thin hair. Unfortunately, I will not be able to keep as much hair as you did.

Rdsm- A satin pillowcase will keep you warmer than a silk pillowcase. I use a silk pillowcase and a down feather pillow. I have tried pillows with cool gel, but found out that they are warmer than down feathers.

Log in to post a reply

May 21, 2017 10:40AM Cali58 wrote:

My hair is getting so thin, that I am already looking at wigs. I will continue using the PCC to save my hair follicles. My scalp will freeze during the last two infusions, as my hair has gotten too thin. Raquel Welch wigs look very natural in pictures. I am planning a visit to Wilshire Wigs once my shedding stops. I miss my long and fuller hair so much, but I need to look forward and accept reality.

Log in to post a reply

May 21, 2017 01:15PM Hanging_in_there wrote:

Paraben Free, Sulfate Free shampoo at Target.

I had to buy on line at Amazon when I was in chemo. My penguin cold capper (adviser?) salesperson said you could get paraben free, sulfate free shampoo at Target, but couldn't give me a brand. I was never up for going to Target and looking at tiny labels.

Now that I'm post surgery, I did the Target looking. I found L'Oreal Everpure Shampoo, in different scents that are both paraben free and sulfate free. I haven't used it yet and will report back. But I liked having another place to buy the paraben free/ sulfate free shampoo.

http://www.target.com/p/l-oreal-paris-everpure-sul...

There may be more at Target, but I found this one first. All of the cheap shampoos seemed to have both ingredients, so I started looking at the expensive ones.

Hopes someone finds this useful.

Dx 10/31/2016, IDC, Right, 4cm, Stage IIB, Grade 2, ER-/PR-, HER2- Chemotherapy 11/27/2016 AC + T (Taxol) Surgery 4/25/2017 Lymph node removal: Right; Mastectomy: Right
Log in to post a reply

May 21, 2017 01:24PM Mquara wrote:

Is anybody having dandruff issues? I think I have developed a form of that. It's common in my family to have issues but I've always used a dandruff shampoo and never had issues. Now I have red patches all over my scalp, it's itchy and very flaky. I just washed today, last was was Monday, and it's even worse.

I am using Acure shampoo, conditioner and dry shampoo and toppik. Has anybody found a safe shampoo for dandruff or psoriasis that is safe to use when capping?

Dx 2/3/2017, IDC, Right, 4cm, Stage IIB, Grade 3, 2/3 nodes, ER+/PR+, HER2- Surgery 2/22/2017 Lumpectomy: Right; Lymph node removal: Sentinel, Underarm/Axillary Chemotherapy 3/27/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 6/25/2017 Whole-breast: Breast, Lymph nodes Hormonal Therapy 9/12/2017 Femara (letrozole)
Log in to post a reply

May 21, 2017 03:27PM Hopfull2 wrote:

mquara, if you buy the acure brand that says clarifying it will dissolve all the dry dandruff on your scalp and clean your scalp better the the other acure shampoo. I don't usually have dandruff but with the less frequent washing I did and found that the clarifying shampoo helped a lot.

E🌺37yrs.old/ oncotype score 39 Dx 7/5/2016, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 8/8/2016 Mastectomy: Right Surgery 9/15/2016 Mastectomy Chemotherapy 11/10/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/23/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/9/2017 Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Latissimus dorsi flap, Tissue expander placement
Log in to post a reply

May 21, 2017 03:33PM Cali58 wrote:

mquara - Plese let me know if you find a good and safe anti-dandruff or psoriasis shampoo we can use. I am having the same problem. I am using Acure shampoo. I also, like you, have darkening of veins. I don't have a port or a picc line, so my veins get darker every time I get an infusion.

Page 620 of 656 (19,659 results)