Chemo, No Hair, Still Fighting Hard!

Introductions - hello everyone. This is such a wonderful forum and website. Thought an intro might be appropriate. Here’s my story:

After many tests, had a core biopsy and was dx with breast cancer in March – just last month. Since then have had a million more tests and have started on chemo. Both Onc and Onc Surg wanted chemo first to shrink this 5 cm lump. Yuk. Stated on AC in early March for 4 cyles; will be tested in between and move on to another 4 cyles of Taxotere. Once the chemo is over, will then have surgery. Onc surg is going for a lumpectomy but I don’t really care as long as the cancer is gone! Finally, there will be radiaiton or RADS as it called here. I used to be really terrified of RADS but now that I have learned more, its chemo that is much worse. Go figure!

One of the best tips I got from this forum was to buy a baby brush. Wow, what a difference. Like most of you, my hair has started falling out and while it is depressing, I know it’s only temporary. The baby brush is my new best friend. Have any of you found anything good to care for your scalp while it is bare? I can’t use Nioxin, it makes me sick (probably smell). Ideas?

Thank God my husband has been very supportive and caring. LIke others in these forums, I’ve noticed that the friends who you thought might be there for you are really gone; and then those folks on the peripheral turn out to be wondeful. Another go figure… Life sure is strange.

Anyway, now we are officially introduced. BC is really not as big or as strong as we all are together. So let’s fight it hard.

kindest regards,
Em

Hi Emily

Welcome to the forums. I am writing to let you know about the Breast Cancer Care ‘Headstrong’ service which you may find of interest. They give practical tips and information on looking after your hair and scalp before, during and after treatment. You will be able to try on a range of hats, scarves, fringes and hairpieces in a comfortable and private environment. You also have the opportunity to buy selected items of stock. As well as being free, you can attend as many times as you want – and you are welcome to bring a companion along for support.

For more information either click on the link below or contact the helpline on 0808 800 6000.

breastcancercare.org.uk/content.php?page_id=2458

We have also published a booklet about hair loss containing useful tips and hints which may also be of some help to you, you can read it via the following link:

breastcancercare.org.uk/docs/hairloss_2004_v2_0.pdf

Best wishes
Lucy

Hello Emily

Sorry that you had to join us here but this site is wonderful and you’ll get lots of support and information.

You ask how to care for your scalp while it’s bare. I had a tiny amount of hair left - just round the back - and I washed and conditioned that and my bare scalp with Neutrogena shampoo for sensitive scalp and Neutrogena or Simple conditioner. I did that twice a day all the time I had no hair.

You don’t in fact say, but I think from your post that you may be in the USA, in which case you may not have exactly those products, but any good, gentle product would be good. In fact I did use Nioxin later on, once my hair had started to come back but I understand about you not liking the smell. I also used a lovely solid shampoo from Lush called ‘New’ once my hair had started growing back. It’s meant to encourage regrowth of hair lost for hormonal reaons so it probably isn’t different from any other shampoo but it smells so wonderful that I’m still using it nearly a year later.

Take care
Anthi x

Hi Emily

Sorry you had to join us here, but welcome, hope you’re coping ok with chemo. I’m nearly finished my chemo now, just one left to do on 15 Apr then rads.
I’m honestly soooooooooooooooooooooooo bored of being bald…and fat.

My scalp was horrible after my hair fell out - i used loads on emollient cream on it each night. Now it’s lovely and shiny and smooth, primed for hair re-growth, can’t wait now.

Take care

Love Ang x

Well thank you. Yes, I am in the USA but all things are available over the internet and we really are a much smaller world these days.

We have Neturogena shampoo and conditioner; hadn’t thought of using that although I use Neutrogena for other things. I did go out and buy some Avenno baby shampoo/wash. The little hair remaining got all frizzy, so today went to a shop and bought some Biolage hydro shampoo. I have used them before when I had hair AND it was colored. I love the fragrance so that may be half of it. I have also bought a lotion that they sell which is hydrogenating (sp?) so will tell you. Biolage is made by Matrix. Not sure if you have it but they are international.

Wish I could make a visit to the Headstrong program. We do have programs here, Look Good Feel Better put out by the American Cancer Society. They show you how to use makeup and wigs. They also have a great section on making your own turbans/scarves - lookgoodfeelbetter.org/women/hair_help/alt_cov.htm I am on a list with my onc; they have them round every so often.

BTW, I got a wig!!! I was pretty determined to be purist and stay with those nice soft chemo hats, but once I really wanted to get out of the house and visit with folks at church, I bought a wig. It is an Aspen-- never heard of them before now-- but very real. Most folks thought I just got highlights (chestnut brown with blondish highlights). I decided I may as well have some fun if I am going go through that. I may buy another. But, I strongly suggest that you first try them on. Has anyone figured out how to secure the wig to your head once its entirely bald? Right now I am using a combination. They sell a net with the wig for underneath it, but it is way too tight. When I bought my chemo hats, I also bought a skull cap thing that fits underneath the hats to give them height. Well, it works well for the wig except you can see a thin white line. If one is charitable, it could be a band. So I have to figure something out. I am thinking of going to get my head shaved entirely and asking the hairdresser about it. Chances are you have been through this already, though.

Story for the day. When my husband is home, I put on the wig. But when I am alone I use one of the silk scarves I used to tie around my neck for fashion. They are very comfortable. I switch to a silk one at night to sleep. Last night it came off. One of my greatest fears!!! But how luxurious it was so sleep without anything tied to my head. And husband did not run away in fear. That was so sweet.

Ang, you mentioned fat. Yes. I gained weight. I hate that!!! As long as I am going to go through this the least that can happen is I can get thin. But they say this is no time to go on a diet; body needs nutrients. Sigh.

I so love this forum. Thanks for your good advice and lots of love.

Emily xx

Hello Emily,

I have just read your posts and must say I am most inspired by you. You sound so positive and that is a good feeling to be passing on to others like me.
Thank you.

I am at the ‘I have found a lump stage’ going for tests on tuesday, really hoping I don’t have to move over to this part of discussion forum buy hey, i am here anyway…

Cheers

Linda xx

Linda:
Well, I hope you don’t need to be a part of this forum either. But, if you do, know that there are many standing behind you who have walked through those steps and felt your sorrow and sense of uncertainty. It is hard. There is no easy way of explaining it or wording it. It is hard. It is life changing. But the realization that we are mortal, that we are not invincible, is just as hard. Combined they can pack quite a double whammy.

As you walk through the steps of tests and diagnoses, I hope you will understand that we have been there before you and have come out of it. I truly intend to come out the other side. God only knows how long I will have on this earth, so I am putting my trust in Him. When it is time, it will be time. Until then, I say let’s celebrate our lives!

It is very springlike today; in the 60s already. I am going to go outside and have a cup of coffee or bottle of water and enjoy the sunshine.

kindest regards,
Emily
xxx