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

JeniferE

I love seeing photos. Thank you, Texas, Summer, Lawyer...I have one more treatment to go...anticipating what it will be like with no chemo, no caps. Keep posting tips, products, questions. Thanks again, Jeni

schoolmom

Hello to all. I am almost 2 years PFC. ( Jan 5) my hair is shorter but back to normal thickness. I was one who shed for 6 weeks after chemo but it was even thinning all over. Still have thick curls in regrowth and thrilled they are dark brown . At 61 I expected grey! I am taking generic aarimidex for 20 months now with no hair loss. I also take biotin supplements for hair and nails so that may help. I looked into keratine shampoo but it had phosphates so I passed.

Thanks for this discussion thread. Hope all have a peaceful holiday.

HockeyCat

Jennliza - I'm 4.5 weeks PFC and still shedding. I had TC x 4. I'm taking biotin and biosil. It seems to help for my nails but I haven't seen much effect on my hair. I heard of Nioxin shampoo and bought it, but not sure when I can start using it. Has anyone used this after cold caps?

I really want it get colored as my gray hair getting so long, but looks like everyone waited for at treat 8-12 weeks PFC. Hope this forum will pick up and get more postings. Other cold cap forum is more for current cold cappers, it is so long and hard to follow....

Hortense

I just found out about this forum recently, so I will be around now : )

Hockey Cat - I used Nioxin shampoo and conditioner #4 for Chemically Treated Naturally Thinning Hair starting a few weeks after chemo ended as I couldn't stand how awful my hair was looking and my scalp felt. It did a wonderful job of cleaning my scalp and getting rid of build up. My hair immediately looked cleaner, better and fuller in volume. Nioxin will tingle a bit as it has mint in it, but it's a pleasant tingle.

During the first two shampoos using Nioxin, I used cool water to work up a lather, then allowed it to sit on my hair a while as I washed the rest of me. I think it needs about five or so minutes to do its magic in the beginning when used to clean away built up oils and dirt. I could feel it warm up from my head's natural body heat which I am sure helped it to work. After those first two shampoos, I just washed my hair normally with it.

As for BioSil, it takes a while to see the difference it makes as it works by influencing the hair growing from the follicle and hair grows at half an inch a month. But, it will make a difference.

HockeyCat

Hortense, always great to have you on the board! Thank you for the info. Was your hair still shedding when you switched to Nioxin? Did it make shedding worse or stay the same? My hair shedding wasn't too bad after the last chemo, but somehow it got worse about a week ago. I didn't want to wash my hair, as I was worried about losing more hair. I had to wash it today and it lost alot. I think I'm going to wait until shedding subsides before switching shampoo.

Hortense

HockeyCat - I was one who shed for 16 weeks after chemo. For the first month afterwards it was a slow shed, then to my dismay it picked up quite bit the second month before slowing down again to a steady shed for the last two months. My shedding stopped suddenly and completely exactly at the end of 16 weeks. I don't think the hair I lost had anything to do with my shampooing with Nioxin because I was already shedding when I used it.

In my case, what seemed like shedding hair may also have been hair loss due to breakage of my long hair which was already dry and damaged before I started chemo. My avatar shows how dry it was a month after chemo ended and also shows the beginning of the long ends thinning out from breakage. I believe I caused a lot of damage to my hair myself by lightening my roots just before starting chemo. I knew Penguin advised against doing so, but I foolishly did it anyway. The result was that after chemo ended, I could both see and feel a bump on my hair shafts exactly at the point that my bleached hair met my natural colored hair. Something happened there that caused many hairs to break at that juncture.

Penguin wants people to have a bit of natural color growth when they start using the caps, and I think it must be because damage from chemo, like I experienced, can happen to bleached hair at the scalp line. Today, my hair is thick, healthy and shiny as I take much better care of it than I used to. I certainly appreciate having it more

Bottom line. I don't think Nioxin hurt my hair or caused it to keep shedding.

HockeyCat

Thanks Hortense! I colored my hair to cover gray 2 weeks before the first infusion. My gray hair is pretty long now, and hard to cover! Today is 5 weeks PFC, still shedding a lot. I think shedding picked up after 4 week PFC.

Do you take Biosil once or twice a day? I was taking it only once a day, and realized that the instruction said I can take twice a day.

Hortense

I took BioSil twice a day originally, then at some point dropped to once a day out of laziness. I should go back to twice because I am on Arimidex which can cause hair shedding.

Interestingly enough, after two years on Arimidex I have started shedding. I do not know if the shedding is caused by the Arimidex, or if the replacement hairs of the hair I lost to shedding during cold capping are simply coming to the end of their cycles. It is too early to tell.

My hairdresser suggested it might be shedding due to it being fall, as she says many people shed in the fall, though I don't know why they would. Spring would seem to me to be the more natural time to shed. That's when animals shed.

HockeyCat

I didn't know that AI causes hair shedding. After radiation, I'm supposed to start either Tamoxifen or AI with Lupron.

My hair keeps shedding but it seems less last few days. I'm worried that there will be some bald spots if it keeps shedding like this. I kept my hair with cold cap during chemo, but didn't think it'll shed this long after.

summer70

Hi All- nice to be on the other side with you! It's such a relief when chemo is over I think there is the tendency to want to forget about all things 'cancer' for awhile. At least that's how I felt. I felt ready to do a check in after 6 months or so & It's really nice to see some familiar cappers on here (& some new ones, too).

I found that my shedding really gained speed in the months following treatment. I don't know if it was partially the herceptin or the tamoxifen (which I started & decided to stop) but I was losing a significant amount of hair until about a month ago. Like Hortense, it ended abruptly. The continued hair loss came as a surprise as I assumed the worst was over once I finished taxol last April. It was really unnerving to run my hands through my hair & have major strands fall out 20 weeks post treatment! I have lots of new growth but my wimpy ponytail reminds me that it's a slow process. I have highlighted my hair a few times so I'm probably not helping the process. I started taking the supplement Viviscal in Oct & it may be coincidental but the shedding stopped & re-growth seems to have picked up dramatically. I took Biotin & silica throughout chemo & I think they helped, too.

Would love to see pics & hear more about how others are faring post treatment!

schoolmom

All is going well just about 2 years PFC. I need to get a new pic as mine is from June 2013.

HockeyCat

Today is 8 weeks PFC. Still shedding... Top of my head became very thin, so I need to comb and hide the spot. Good news is that I noticed some tiny hair growing! Thinking about starting Nioxin today. Happy new year everyone!

AmyQ

I used Nioxin for over a year and I do think it helped immensely. I've gone back to coloring my hair but went dark dark dark instead of blond which I believe is a less harsh process, at least I think it is. Anyway, good luck to everyone on the other side of Cold Caps. I would recommend them to anyone wanting to save their hair.

Amy

JeniferE

HockeyCat, I am thinking about starting Nioxin, too. I am 4weeks PFC.

Warrior_Woman

Hi All -

9 mos. PFC and my hair has filled in nicely. It is 2 different lengths and my stylist said by the Spring I can even it out. I have a theory that we are each predestined to lose a certain amount of hair. I lost a LOT at 2nd infusion and it was steady after and tapered off quickly PFC. I'm guessing 50% total loss but I kept enough to manage with creative styling. I believe that some of us lose it sooner and some later. And so, if your hair is shedding more PFC it will stop at some point. I've returned to normal hair care treatment and it really is nice to throw away some of the junk I used to get through this.

Be well for a healthy new year everyone!

JoeyJamesMom

Hi, everyone :-) I have a question for all of you, please.

I had 4 dose dense treatments of Taxol and 4 dose dense treatments of A/C.

I finished my chemo treatments on Nov. 7th with a lot of hair.

Here is a picture from Nov. 17th:

Shortly afterward, though, I started shedding a lot. I knew to expect this thanks to everyone who takes the time to post on the forums here.

What I wasn't expecting, though, was how long this shedding would continue. Note-I still follow the protocol from Penquin cold caps.

Here is a picture of how much hair I lost this morning after combing my hair:

This is pretty much what I lose after I comb my hair each time. Usually, I only comb it once or twice a day

because of this.

I do not have any bold spots, but I am getting really worried because if this doesn't end soon I will.

Here is a picture from the end of Dec.

I this how much everyone else seems to lose after combing their hair?

I would greatly appreciate any replies.

Many thanks in advance.

P.S. Sorry about the pics being so big.

RainDew

Ihi joeyjamesmom,

I finished my chemo at end of September and am still shedding...similar to you I lost very little hair during chemo, much more since it ended.

Like warrior woman, I think there is just a percentage we will lose, either during chemo or after. For me that has been after. I lose a similar amount to you every time I comb, I try to comb only once per day, and it is worse when I wash.

That said, I don't have any bald spots - more just a general thinning. My hair is a lot longer though (no haircuts for 6 months means it's grown a lot) which kind of hides the thinness (it just looks different...). I now have a pretty sad little pony tail :-)

I am hopeful as I approach the 16 week mark next week that it will stop soon...I'm pretty ready to move on...

Kazzy115

JJMom - I too had dose dense ACT which ended September 7. I shed quite a bit as well throughout and afterwards for maybe 8 weeks. I did end with a very thin spot that could be disguised a bit with a scarve rolled as a headband. I think that lasted for maybe 3 weeks and then growth began to cover. Ionce shedding stopped I did change to a short style as there wasn't enough hair to wear it down. It was very scraggly. Your hair looks to be in much better shape than mine did. I'm still so glad i used the caps as no one was able to quite tell and I quickly felt a normalcy in appearance Hang tight shedding will stop soon

jc254

JoeyJamesmom, you did really well for AC chemo.  It's not unusual to shed for 4 months PFC.  I definitely lost more hair PFC than during chemo and the amount is similar to your picture.  Hang in there... I have never read of any cold cappers needing a wig post chemo because of continued shedding. Keep following the hair care protocol until shedding stops (or at least signficantly slows). 

Raindew, let us know when it finally stops shedding...

Warrior, good to hear from you!  You've had a tough road and I hope this is the end. 

 

JoeyJamesMom

Thank you SO much responding :-)

Geez, when does the worrying stop?!

I had a double mastectomy with latissimus dorsi flap and tissue expanders on Dec. 15th.

I thought, I would be done worrying about my hair by now.

Unfortunately, I am sure everyone here understands.

I hope you all have wonderful and worry free day!

schoolmom

jjmom. I never combed or brushed my hair per se for months PFC. I finger styled it . it had more curl than before so I wet it and scrunched it. Still 2 years PFC and very tentative even though shedding is nonexistent. Taking arimidex which can cause hair loss so still babying it. Good luck.

Warrior_Woman

JoeyJames - My bilateral LD was last month and yes, it has taken priority over my hair.

Ladies, I lost a LOT of hair during chemo. It will not be the same after but it is far better than not capping. A friend did chemo 4 months before me and she still has a very short haircut. She looks cute but I'm not a short hair person. It fills in quickly. I took this selfie today, 9 mos. PFC

I've aged a lot this year but I do not look like I was just released from a concentration camp.

JeniferE

You look great, Warrior Woman! I am just 5 weeks PFC, patiently waiting...being gentle with my hair. Will trim an inch at the end of the month...oh so carefully!

Hortense

Warrior Woman, your youthful looks will come back. I aged a lot also due to chemo and was not happy about it, but after a while I started working on my skin and it brightened up considerably. Now, two years later, I look healthy and younger than my age again. It takes time for your body to recover from what you have been through.

barremom64

Warrior Women- You look AMAZING! I like you, lost a TON of hair during chemo. I was part of a clinical trial for Paxman cold capping unit which I attribute the significant loss to. I had a significant bald spot at crown and major recession at forehead, temples and ear areas which made me look like an alien plus Overall thinning. Losing about 80% of my once thick healthy hair. I did manage to retain enough that once 5 weeks PFC came with vitually no shedding- I marched into the salon. I'm now sporting a short "sassy" do which is passable but certainly not the results I had hoped for. Thankful that regrowth is strong! Like you, I think about where I would be if I hadn't CC. I'd have 1 1/2" of spotty regrwoth, but I certainly would look like a cancer patient. I actually went on a job interview last week, I am confident they had no idea what was going on. If I hadn't used CC that wouldnt have been possible. For that I'm thankful

HockeyCat

Warrior Woman, Barremom, you look great! I'm over 8 weeks PFC. I've been counting days/weeks and waiting for shedding to stop.... It's been nerve wracking every time I comb and wash my hair. But I realized something after I heard about Stuart Scott this morning... He said "You beat cancer by how you live, why you live and the manner in which you live." I'm going to stop worrying too much about my hair. I believe shedding will stop at some point just as others. I've been hesitant to go play hockey, the sports I love, because I was so worried about losing more hair by wearing a helmet and getting sweat. I will still take good care of it, but I'm going to play, enjoy my life, and be happy!

RainDew

hockeycat - love this attitude! Go play and enjoy :-)

I've just turned 40. Plan to enjoy every single day!

Warrior_Woman

Ladies - For those who may have missed when I posted these beauties before, this is just one day of hair loss for me during chemo. And I survived. Try and beat that! My sarcasm is meant to ease your anxiety. Shedding stops. I had a couple areas that were very thin that I needed to comb over gently to disguise balding. My favorite quote at the time was, "Is my bald spot showing?"

Barremom - You look so cute and I agree ..nobody will ever know.

Hortense - So glad to see you! You really helped me through this. Any tips you can share to improve my skin are greatly appreciated.

jc254

Barremom, you look great.  Your hair cut is really cute-  definitely looks intentional rather than chemo related.  I think it's great that you've stuck around supporting other cappers even though your cold cap experience wasn't the best. 

Hockeycat, go play hockey.  Let's all enjoy 2015 and put this cancer crap behind us.  You ladies are the best- what is it about cold cappers that makes this group so warm and encouraging?

SueBe

Barremom you look great! We started cc'ing at the same time, same day I think. I often think about my cohort.

I am almost 9 weeks PFC and still shedding. No bald spots, and the area that thinned a lot is not covered by gray hair.

I have to get a cut soon. I am scared about coloring it. Maybe I'll try henna.