Life After Cold Caps: a place for ex-cold-cappers to share

Warrior_Woman

PCH - I don't know about the timing with Nioxin. I was long past chemo when I first used it. Hortense suggested it and may have some thoughts on it. I believe it works by unclogging the pores of your scalp. Than can be good unless the scalp goo is the only thing holding the hair in. Sick joke.

Golden Paws - Yep. I know. It can freak a person out to lose so much hair. The unfortunate reality is that most of us will not have great hair when this is over but it is something to work with and you won't be bald. I wore my hair up for a long time. It was too thin to wear down unless I pulled it back. I also wore ponytails and braids and barrettes and Mad Dana headbands in every color they have - http://www.mad-style.com/Mad-dana_c_153.html But you know what I never wore? A wig! With each passing month the new growth fills in more and more so there is only a month or two that is rather rough. Unfortunately, hair will shed and the washing days are especially traumatic.

goldenpawsKim

Thanks WW - u r right. Very stressful but I'll get thru this ... because of people like you I wish I could wear my hair back but I thinned a lot in front of my ears so it looks stupid. I just received Toppik in the mail today. I'll give it a try. Hopefully I can cover those thin areas so I can wear a headband or pony. Thnx again, Neighbor! ♡ Kim

JoeyJamesMom

Hi, Kim :-) Have you gotten a chance to try the Toppik? I just bought it last night. I got it for med. blonde.

I tried it a little while ago and it did not do what I had hoped :-(

It may have made my hair feel a little fuller, but it didn't do anything as far as covering my roots.

I am so thankful to have hair, but the color looks horrible! I have light blonde ends with roots that are gray and brown.

It has been 3 months since I finished chemo and I am SO tempted to get my hair colored at the salon with something that doesn't contain ammonia or peroxide.

I hope you find the Toppik useful, Kim.

If you wouldn't mind, would you please let everyone know how the Toppik works for you?

Maybe, I need to use more.

Have a great one!

goldenpawsKim

JoeyJames - yes, I tried it this morning and LOVE IT. Just shook a little on my grey hair near my ears and it looks great. Also used it on my thinning spot near the back of my part ... now I don't look like I have bed head. lol. I dyed my hair back to the well original color when I was in my 20s (ha) so I got the Toppik dark brown. It is excellent. I even was able to pull my hair back in a little clip and didn't look bald on the sides. Just hoping my hair doesn't fall out tomorrow. I'm only half way thru my treatments (2 down, 2 to go) so I can't give advice on coloring after you're done. But .... I am def not waiting more than 3 months. Can't believe you were able to handle it. Maybe try Color Mark for touch up. Good luck. Kim

DaniellaD

joeyjamesmom - try Rita Hazan spray for highlights. I think it's to cover darker hair that dyed lighter. I don't know if style edit has a product but there was a powder on Amazon that was specifically to cover darker hair in between highlighting. If you look at their root concealers you may find it. I know I saw it and I want to say it was a hot pink and black canister. Or how about hair chalk? They make some in blonde - you can probably use that to conceal your roots. I had a friends hay used to use bumble and bumble in blonde or white to cover her darker roots in between highlights. She was like a light brown and highlighted very blonde. It wasn't perfect but it blended enough.

JoeyJamesMom

Kim-So happy to read that the Toppik worked for you. I am probably too far gone as far as my color :-(

Danielle-Thanks very much for all of the suggestions. I really appreciate your time.

Enjoy your night.

DaniellaD

joeyjamesmom - I found the stuff I was talking about to conceal dark hair roots - it's called Rootflage. You can buy it on Amazon. It was driving me nuts that I couldn't think of it. Then again, I have chemo brain so bad that I'm lucky if I remember my name. Good luck

SueBe

I was wondering, for those of us who were still shedding PFC, did it stop all at once or was it a gradual slow down to then stopping all together? I am 13 weeks out and still shedding. Hair is so much thinner now but growing in. No one I just meet thinks "chemo" when they see me. So it was really worth still worth it for me.

I am putting my hair in a small ponytail and using a headband to keep it all in place. Do you guys have other styling suggestions? Wearing it down is really not possible. The hair is right past my shoulders. I have basically four clumps hanging there and curling in on themselves. Can't wait to get it cut into a bob.

HockeyCat

I heard a few people mentioned that their shedding completely stopped. I'm almost 14 weeks PFC, shedding is slowing down. Last night, I washed my hair with warm water from shower head, gently massaged my scalp. I lost about the same amount as pre-chemo. I wonder if this is it... My hair is growing not only on my head, but everywhere! I've been taking Biosil, but am thinking about stopping since I'm getting more darker my facial hairs.

SueBe, my hair is about the same length as yours, pretty thin at the bottom. I have to wear it down to hide my gray hairs.

SueBe

Thanks for the info HockeyCat. I do hope the shedding is going down for you and stopping soon. I have tried the Nioxin 4 and it made a big difference for me. I didn't have a shedding scalp problem so didn't leave shampoo in for too long. I noticed the shedding was less and my hair just looked a lot fuller. I used the conditioner too but didn't massage it into my scalp. I am feeling a lot better about the hair thinning after using it.

hope49

Hi SueBe,

I think my shedding returned to a normal rate at about 4 months pfc. What really helped in how it looked and felt was getting regular, gentle trims. I started at 4 weeks after my last treatment and continued every month until I hit the 6 month mark when I went for full cut and color. Each trim, I had her do it dry and just comb gently and trim 1/2" the first time and then just about 1/4" each time after. Really made a huge difference for me. As for styling, I would blow dry on cool until just about damp and then carefully set my hair on velcro rollers, spray with DermOrganic volume spray and then either let air dry or blow dry on cool the rest of the way. It created a lot of volume to my very thin hair and while it was a bit of an effort, since I was only doing it once a week, was worth at least the day or 2 of 'good hair'. The other days, I just pulled it back in a low barrette - that spread out my tiny ponytail so it looked like more hair. All during this time, you will be growing new hair that may not be so obvious for awhile and before you know it, you'll be back to your old routine…hang in there, the finish line is in sight!

HockeyCat - I took the biotin and silica faithfully until I stopped shedding and also noticed more facial hair - ugh! At least I knew it was working . In any event, I'm now about 3 laser treatments in and happy to report the darker facial hair is gone!

HockeyCat

SueBe, I'm using Nioxin #4, too. I used it once and stopped as my hair shedded more than usual. I guess I started using too early. I started using again as shedding slowed down. It feels good to my scalp. I use the conditioner too, then apply Macadamia leave-in cream. My hair looks a little better and fuller. Can't wait to get my hair cut and color. I contacted my hair stylists, and she said Davines has non-ammonia grey coverage!

Hope49, laser treatment sounds like a good idea. I'll plan for that. ;-) Thanks for the tip.

SueBe

Thanks hope49 and HockeyCat! I washed my hair again today and cut about an 1" myself. I couldn't stand the wispy ends just hanging there. I looks so much better. I can't believe I did this myself, but it turned out well. I guess having less hair makes it easier to cut. I can't wait to get back to normal hair routines!

incognitomom

HockeyCat and SueBe- glad you both had something to be happy about hairwise! My shedding has slowed down... I think this is the end! I can't wait to color!

Hortense

SueBe - You did just the right thing by trimming your hair yourself. I did the same thing every month and it made a big difference. When I finally went to a hairdresser, her professional trim made me look quite civilized. I had to shorten my long hair to shoulder length, but as the new hair grew in I let it all get longer again.

Jennjdance

so tonight was my husbands and my belated Valentine's Day date. I've been feeling so crappy about my hair lately and not being able to style it, so I decided to use my straightener for the first time since chemo. I am five weeks post final chemo. I was very careful about only straightening the ends and staying away from my scalp but when I was finished, I looked like my old self! I felt amazing tonight and my hair looks so good!

Has anyone used a curling iron or hair straightener this early post chemo? I would love to continue to do this in order to feel good about myself. But I don't want to negate all of the hard work we put into using the cold caps and keeping my hair. Thanks

DaniellaD

JennJdance - I used my curling iron, straightener and especially the instyler which I love becuase it makes me look like I had a real blowout. I blow it dry with cool air on my scalp upside down for a little volume and then use instyler, being careful to hold top of hair as I pull down- similar to how we all brush or comb our hair post chemo. just use heat protectant because hair can get extra dry.

I used umberto u color semi permanent to cover greys. I wasn't hapy with Clairol Beautiful Browns - my hair felt gross and it washed out immediately leaving the grey tinged with green. Anyway, Umberto U color covered grey completely, no ammonia/peroxide and left my hair super shiny. Used light brown and it was so dark! Shiny but really dark brown. So definitely pick 3 shades lighter. Amazon or Ulta

SueBe

I just tried the Clairol semi permanent and did not like it one bit. Grey hairs still showing through. I will try the Umberto U next.

Shelly74

Are the cold caps covered by insurance? What has the cost been to you ladies? Which company did you rent from? Just found out yesterday that I will need chemo... And my hair is my pride and joy.

goldenpawsKim

Hi Shelly. Sorry to hear you will need chemo but glad you found this site. It has been a tremendous help to me as I go thru chemo & cold capping. The caps are not covered under insurance unfortunately. It's approximately $550-600 per month. You rent them through Penguin Cold Caps. I'm doing my 3rd treatment on Thursday and so far I still have my hair it has thinned but no one would ever know I'm doing chemo. I'm on Taxotere and Cytoxan every 3 weeks, four times. Cold caps work better w certain meds than others. Also, check out the COLD CAP USERS PAST & PRESENT topic/posts on this site.

Good luck ♡ Kim

JoeyJamesMom

Hi, Daniella :-)

Since your our product guru, what heat protectant would you recommend?

For the last 6 or 7 months, I have been letting my hair air dry, so I wouldn't cause anymore damage. I look like hell, though :-(

And, I am going back to work on February 23rd, so I REALLY need to do something!

Like Jenndance mentioned, I am going to have to break out my straightener and hope and pray for the best.

Many thanks for always being so helpful.

Shelley74-I wanted to mention that my oncology center did not have a medical freezer I could use, so I had the added expense of approx.

$80.00 to $100.00 every two weeks for dry ice. It was well worth it, though. I wish you the best in your treatment.

Have a good one!

Lynda

JeniferE

Hi Jenndance,

I even used my curling iron during chemo, just on the ends, because they were so dry and frizzy. I am 10 weeks out, using a curling iron still just on ends. My hair is a lot thinner. Loss was all over my head so coverage is fine, but my husband does not call me the lady with the big hair anymore. Time will tell. I got a full inch trimmed two weeks ago...felt great!

I am looking at "mother of the bride" dresses online, asked the nurse and my well-dressed, cool MO their opinion as I am stuck in a chair waiting for my herceptin. My MO said, cut your hair even shorter, above my shoulders, for bouncy hair. The wedding is in June, I think I will try going gradually shorter, and hope to get a good color weave in early June too.

Oh, hair, we love you!

Warrior_Woman

Shelly - My insurance reimbursed me $500 - the price they would have paid for a wig. There is a post way back in the cold caps thread that explains how to submit the claim. Unfortunately, it is a long thread.

Jennjdance

Contact Patsy Graham. Cold caps has a financial aid program. I got my caps 100% reimbursed.

Patsy@ccaps.org

JoeyJamesMom

Hi, Jennjdance :-)

Question, please. Who reimbursed you 100%. Your insurance company, or Penquin Cold Caps?

Can you explain to us how you did it?

Many thanks in advance.

Lynda

Jennjdance

when I called to order the cold caps, my representative referred me to Patsy Graham. It's a separate company, but they work with cold caps to give financial aid to cold cap users. You can ask your representative, or just contact Patsy. My insurance was not involved at all. Each month I would pay for the cats myself, submit my receipt to Patsy, then get a check back in the mail.

JoeyJamesMom

Hi, thank you, Jenn :-) I was not aware of this type of reimbursement.

Warrior_Woman-I think this is the post that you are referring to above:

https://community.breastcancer.org/forum/6/topic/7...

The post was from "tmb173".

She provided a lot of really helpful information.

I know I am going to give it a try. Boy, it would certainly be nice to get some of that money back!

I hope someone else out there finds this helpful.

Lynda

DaniellaD

for heat protectant I like some creams- Kerastase Necor Thermique or Alterna Protein re texture. If your hair is thinner, or shorter and you don't want extra weight on your hair, which is most everyone here, use a spray. The best is TreSemme Heat spray, Nexxus Heat Protexx (I hate all other Nexxus products but this one),Alterna Caviar Styling Prep. Alterna is amazing. The styling prep is super light , great for detangling and moisture. I am not sure if think it's for heat, so I layer with cream or spray protectant. Still it's an awesome product during cold capping. Of course I always use Josie Maran Argen Oil hair treatment on my ends - stuff is amazing for long hair.

Anyone try Lush products? They are all organic. They have a conditioner for the scalp to help growth I'm considering now that I'm 3 months out and not shedding.

Hope everyone is well this evening!

Btw, my hair everywhere else came back this week with a vengeance. Omg! Back to shaving twice a day. It just makes me think that had I not cold capped, I would just now start seeing real growth on my head. So thankful for cold caps

JoeyJamesMom

Thanks so much for the information, Daniella.

I really appreciate it :-)

Hope you have a wonderful night!

Lynda

Warrior_Woman

Lynda - That was it from TMB. Thanks.

Question: How many of you have switched to natural deodorants based on Frank Fontain's advice? I've been walking around for 10 mos. smelling not so great. And yesterday I read on Susan Love's site that the link between antiperspirant and BC is an internet urban legend. She claims there is no relationship at all.I'm double checking with my MO and looking forward to smelling better this next year.