Permanent Hair Loss?

Hi Katie. I am so sorry to hear how you are feeling about yourself. I know exactly what you are going through. You have described my situation to a T. I had 6 rounds of docetaxol and am wondering if this has damaged my hair follicles and hair gene. Oncologists don't tell you anything! We need to change this. Perhaps we can write a letter to their professional body as a part of this network.?

Hope it works for you, Katie. X

Sounds like a great solution.

I think I might have found a good thing so I'm going to post about it here in case anybody with a similar story reads it.

Over the last couple of years I've grown back some whispy but horrible hair.  It seems that it is finally enough to be able to hold a topper.

I have had lots of full wigs, mainly acrylic.  They are a good temporary solution to hair loss but they don't suit me as a permanent solution.  I went hunting for toppers.  It's hard to know what to buy online because you need to colour match etc so I wanted to visit someone to look at my hair and tell me what to do.  It's hard to find places.  Around Brisbane I have only found one that custom makes toppers and that doesn't glue them onto your head.  I want to be able to take it off or put it on and still have my hair underneath.  Some that get glued on need some hair shaved for good contact and I didn't want to do that.

I looked around online and found a placed in Brisbane (Ashgrove) called Tango Hair Loss Clinic.  There are two ladies there who are hairdressers and all they do is make customised toppers for people with tricky hair loss problems whether it's alopecia or problems like mine.

They made a plastic profile of my head and we worked out where the hair is missing and where it needed to go.  We picked the colours of hair to go in the piece to match my own hair and blend in and the order was done up to be sent overseas.  It takes 3 months to be made.  Then I will go back in to have a hair trim once it's clipped on so it can be perfectly blended together.  

I tried on a sample and it feels really good.  It's so much better than a wig.  Not tight or itchy.  Being human hair it's soft and feels lovely.   It probably feels similar to having just a hair clip in your hair.  The topper can be cut to duplicate my own original hair if I bring in old photos.  

The downside is that it's expensive.  $2,600 for this one but I get $1,000 back from my health insurance if I get a letter from my oncologist to say that it is a prosthetic required as a consequence of cancer treatment.  So it will cost me $1,600.  I think it's worth it considering what I've been through.  I expect it to be game-changer for me.  I can't wait to get it.  :) 

I think I might be in the same situation. This is the third time I have lost my hair and as I am on Abraxane indefinitely my hair is very slow to grow back.  I started the Abraxane last December and my hair had mostly fallen out by early Feb. Since then I have had some regrowth but it is sparse with bald spots at the crown. Also it is very white with a white scalp. Sometimes when I look in the mirror in the morning ,I give myself a fright. I look like uncle Fester from the Adams family.  At the back of my head I have decent growth, sticking out every where and different lengths.  I m considering just getting a trim for the back. I guess I will be wearing hats for a while yet.  Not too fussed on wigs , especially for summer. I am pleased that I am still alive. I have had metastic breast cancer now for 5 and a half years and although the treatments can be pretty damaging to our bodies , they are keeping us going . So I not really complaining.

What a Crap situation to be in. I think our oncologists need to educate us on the possible side effects that may be permanent . There is so much they don't seem to tell.

That is really crap. My oncologist said she wouldn't prescribe Docetaxol because in her words it wasn't good enough that women didn't get their hair back but I wouldn't have known enough at the time to object if she did prescribe it. I hope you find something that can help you. 

Thank you for the advice.  I have a laser helmet which I've used for a year.  If it helped someone else a bit I will try it for longer.

I have gone through every published research paper that I can find on this condition and it seems to me that the problem has been documented for a decade, yet nobody told so many women given Docetaxel that they might permanently lose their hair.  Cancer didn't do this to me, the chosen treatment did.  I did not know enough about the medications to make a better choice.  I relied on the advice of my oncologist and that was a mistake.  The trouble is that I was not in a condition to do any more than that at the time.  Having Docetaxel was a big mistake and in the same situation, knowing what I know now, I would insist on a different medication.  If I was told of this outcome I would have had to think hard about what to do, but the issue is I was told my hair would grow back.  That was wrong.  If there were two possible treatments and one was going to ruin my hair away permanently, then I would have picked the other. All the published research is saying that there is no treatment. The Minoxodil or other treatments that increase the blood circulation to the scalp can only improve the hairs that are already coming back, it cannot regrow the hairs where the follicle has been destroyed by the chemotherapy.  Different women are left with different amounts of salvageable hair.  I will keep trying to maximise what I've been left with but it makes me cross sometimes and just really sad the rest of the time.

There is a product call Fusion hair tonic )it is a tablet.  That you might want to try.  It was recommended to me pre chemo by one of the girls from priceline who's sister was a hairdresser and some of her clients were using it prior to and after chemo.  It's sold in the health food shops and is about $45 I used the cold caps, so thank fully kept most of my hair, but I do believe this has helped somewhat in speeding up and thickening the regrowth. Might be worth a try its cheap enough I guess.

I also wanted to add that this is a common problem sadly and it happens on alot of different chemo's and post chemo drugs. I was not warned beforehand and looking back I don't think I would've wanted to. We are worrying about so much all ready and it wouldve just added to my stress. 

I'd love to speak to you privately if you need. I don't come on here often  anymore, but i still love to help. I generally only pop in when @primek tags me (which i love so keep tagging) 

Ashley & Martin sold me a unit i keep forever and it cost about $2000 ish. they let me pay for it on a payment plan. There are still no guarantees but has helped me. The unit is a laser cap and you wear it at home every few days for about 20-30mins. it the comfort of your own home and like i said you get to keep it. There was definately thicker hair and new growth when i have had my follow up photos taken. It doesnt hurt and is non-invasive.