Nov 24, 2012 11:50AM schoolmom wrote:

Loafer:  So sorry to hear about the hair shedding.  I am new to this and on day 20.  Next chemo on Monday.  I did not shed at all the past month, even with hair washing.  On Thursday, day 18, I started shedding and continued yesterday and today.....minimal really.  Maybe 10-15 after washing Thursday and a few noticeable on my clothes during the day. 

Maybe you should contact geralyn at penguin cold caps and see what she suggests/thinks.  Good luck

Nov 24, 2012 01:28PM makingway wrote:

Please, please, please follow my suggestions. I have a lot of experience with the cold caps. The suggestions I give are the result of it.

* Do NOT comb the hair back. Let hair fall down naturally. Use hair to provide cover for the ears-women that use other cover for the ears generally lose hair around them.

* Do NOT cut hair.

* Do NOT use a leave in conditioner.

Loafer-I am surprised at the amount of hair loss you are experiencing. Send me a private message and I will help to figure out what can be done to prevent anymore.

Nov 24, 2012 04:41PM Loafer wrote:

Thanks all. I've already cut my hair from mid-back to chin length - really had no other options - if I wanted to leave the house. My hairdresser was beside herself with the hair falling out. She only wet it down and cut straight across - did not blow it dry for fear more would come out - its winter here too! She said the majority of loss is around base of neck and ears. I don't pull it back (except for a bobby pin to get it out of my face) and use the required organic shampoo/conditioner. I wear nothing on my head and sleep on a satin pillow case. I did speak to my helper ( who has never had anyone fail) and she's being very supportive. Said it should stop falling out any day now....

Nov 24, 2012 11:34PM - edited Nov 24, 2012 11:41PM by Hortense

Loafer and Tlym- You may be fine. You both are at the exact time people start to shed - between the 18th and 24th day according to my breast center, which warned me to expect shedding. Though until it started, I really did not understand what "sheding" meant.

Mine started about the 21st day, slowly for a few days, then it seemed to always be falling out which was disconcerting. Hair was everywhere around my house, just like you describe. It was all over my clothes, my bureau, floor, furniture and fell into my food. I would scoop up a handful after each shampoo (using DermOrganic also) which I put in baggies.  It certainly seemed excessive at the time, but I think it was simply the oldest, weakest hairs falling out after the chemo hit them, which I had been told would happen.

The heaviest shedding let up somewhat after the third treatment and, while it did not stop, it did slow down and I tried to relax enough to accept it. I shed more heavily again three weeks after my chemo ended for a few weeks before it slowed down again. Hair kept falling out until 16 weeks post final chemo when it stopped.

At times I wondered if I would go bald, but I didn't. My hair has thinned out, but did so uniformly all over my head so that I do not have any bald spots. It does not look the way it did before chemo - thick and healthy, but I do have full coverage which for me is much better than being bald. I have shortened it a bit, half an inch at a time, because it was looking straggly plus it had continued to grow throughout my chemo treatments and needed a trim.

I have lots of new hair growing from the follicles that shed. If I lift a section I can see it is far thicker at the base from the scalp up an inch or so because of all those new hairs. My growth is very apparent because it is my natural color, not my chemically lightened color. The old hair strands have natural colored roots that are a full four inches long now, meaning that they had kept growing vigorously through chemo because of the protection given by cold caps.

Had I not used cold caps I would have lost every hair on my head by the 21st day and been bald. Now, at four months post chemo, I would be anxiously waiting for my hair to regrow enough  to cover the baldness. As it is, I do have hair covering my head. It is not gorgeous - in part because I can not color my roots, but it is there still and I am so happy to have it. I can see new hairs coming in to thicken what I have, and in another two months I will be able to color my roots to get back to the overall blonde color I am accustomed to seeing. 

I would rather have some bad hair days to complain to myself about than go bald. Or much worse, discover that I was one of the unlucky percentage that never regrow their hair. I know someone who can only grow a few wisps of hair because chemo damaged her follicles so badly. 

Stick with the cold caps, try not to panic about shedding and trust that, as long as you follow the cold cap protocol exactly, you will keep your hair enough to have full coverage. You have 100,000 hairs on your head normally, you can lose a lot and still have enough hair to look presentable.

Good luck!

Nov 25, 2012 11:05AM Tlym wrote:

Loafer-My bald patches are on the front top sides of my head, exactly where there is a seam in the caps. I have long hair, so I'm able to do a middle part and cover those spots. The back of my head and behind ears, where most people seem to lose hair, are perfectly intact. Guess my helpers did a great job of fitting the caps to the usually troublesome areas. Never would have guessed I'd lose hair on top. I'm glad to hear your side effects are better this time. Get plenty of rest and hugs to you too!

Hortense-Thank you so much for your support. I am grateful to still have a full head of hair, thin, but it does cover my head and looks great from the back. Many of the women on my November chemo board are struggling with shaving their heads and ill-fitting wigs, so I'm thankful I'm just contending with lots of shedding. Can't wait for the day when I'm in your position and waiting to color my hair!