Hair Loss is not always temporary

@KatieT

Thinking about what Brenda has mentioned, I know lots of ladies all take different type supplements to help. Vit D is a daily for me since Chemo and so important, but something I learned after seeing a Kinesiologist for the past year is the most major mineral that we need and not alot of people know is Magnesium, because it services over 300 enzymes in the body on a molecular level. 

Magnesium activates over 300 enzyme reactions in the body, translating to thousands of biochemical reactions happening on a constant basis daily. Magnesium is crucial to nerve transmission, muscle contraction, blood coagulation, energy production, nutrient metabolism and bone and cell formation.

I take it as powedered in water twice a day, I also have magnesium spray which helps with cramps. If you look it up, its interesting. Maybe worth a go??? to help replenish your body and maybe help with hair growth on a molecular level....don't know...Hugs Melinda xo

What do you know, Vita C is good to help hair growth. For a while now I have had a real fettish for oranges, often eating 4 a day. When I don't have oranges I take the ascorbic acid tablets. I just googled Vitamin C fix hair loss and there are a couple of links that agree. The things we learn.

I have some hair - just not enough to pass for normal.  The research papers I've been able to pull up say the side effect is dose dependent and not everybody gets it.  I know my cancer is high-risk and I had a heavy regime which is why I'm wondering if I might have been overdosed.  Somehow the knowledge that most people get through it and go on in life doing all the things that is talked about in the websites, the leaflets, the supports groups etc, makes me feel even more cheated that I don't even fit the 'breast cancer journey' profile if there's even such a thing.  I seem to be on a lonely and different journey that doesn't go anywhere.  A year after treatment finished I attended my daughter's wedding almost bald and looking horrible.  I could have worn a wig but she wanted me to be me.  I looked terrible - not me at all.  I have none of those wedding photos in the house.  They are of a stranger - the same stranger I see in the mirror every morning.  It's not me.  I am now one of the gullible people who are constantly searching for any solutions from quacks and sales people because the medical establishment cannot offer me any solutions.  I have now been 'treated'.  

Can't wrap my head around (excuse the pun) your hair didn't come back? I had Docetaxel and Cyclophos but my hair did come back. Trouble is it came back wiry and curly which looks a million bux but doesn't feel like my long soft silky straight hair at all. I live in hope my 'real' hair will one day return. At least one year on my nails have come good again. Perhaps your body is slow in putting things properly right again too in the hair aspect and it just needs more time? I hope its the case for you even if its not thick, just a nice modest head of hair would be great.

I had Adriamycin, Cyclophosphomide, four rounds, then Docetaxel four rounds and Herceptin for twelve months.  It seems that the Docetaxel is the big problem.  I wish I'd never had it.  It destroyed me.  Others who had taxol don't seem to have experienced the same problems.  Docetaxel (Taxotere) is different from Taxol and it causes these horrible problems in a small percentage of people.  My terrible radiation burns were put down to this chemotherapy and its effects on my skin, plus I had terrible skin issues during the rounds.  I spent a lot of time during those three months just lying in a hot spa trying to deal with the pain.  For me, it was a ghastly medication.  It's now eighteen months since my last dose and I've been failing at hair growth all that time.  All my breast cancer friends grew their hair back, just not me.  I don't even fit in with those ladies any more.

@KatieT - I actually have to agree with you, even with hair growing back, I STILL feel like I am someone else, I look nothing like I used to and it is very very very hard to be thankful for being alive with the things you are left with to pick up the pieces and make a life with. I dont think there is any right or wrong with how anyone feels...I think we all have earned the right. The HARDEST and most psychological thing I have found having had Breast Cancer twice in 5yrs is....I was NEVER sick at all, I had no symptoms, no lumps no nothing. LUCKY????!!!! I was told to be caught early both times. So you find yourself being treated with their treatments for something you haven't seen, felt or been unwell with...but there I was having to accept it all twice..YIKES!!!! 

I have no problem about being honest anymore about the entire thing, I am grateful to be here of course....BUT its complicated isnt it?? because it was the treatment that made me very ill and look the way I do now...not the Breast Cancer. So its a double edged sword??!!! 

One thing I learnt through my 2nd diagnosis was.....everyone saying 'YOU have to do it for your KIDS"!!!! Ummm NO I DON'T.. and you know why??? because I realized something quite profound. If I couldnt do the treatment for ME and ME ALONE, I sure as hell couldn't do it for anyone else. Selfish??? NOT ONE BIT! Because for the first time in my life I was HONORING ME. As Women we put ourselves last in every aspect, we are nurturers and I wouldnt change that, I love my kids...but this was about ME nobody else...

I really hope you find some great tips or direction and help with it. Hugs Melinda xo

@katieT 

I am so sorry to hear about the hair loss still!!! Can I ask what Chemo regime you had?? I had FEC and Taxol and Im 11 months post Chemo THANK GOD~!!! but have finally got a full head of hair and thick . The Oncologist absolutely has a duty of care to tell you all the possibilities. My Oncologist didnt hold any punches at all, you have a right to be well informed! It is very distressing! 

I lived in wigs for about 7 months, but this is very difficult long term. I wish I had some information that could help, but surely there are others who know more about this!?? 

Melinda xo

Better to be alive with hair than alive without hair - this didn't have to happen.  

I have almost no eyebrows and eyelashes.  There are a few faint hairs that aren't visible but when you look very close you can see them. Maybe they will improve.  

I have not yet worked out whether it's better to be alive with no hair than dead.  I guess each person has a different potential to adapt to their new circumstances.  I don't know who I am any more but I'm not the capable, smart, professional person I thought I was.  I'm someone else, someone who looks sick and dull and will probably do forever.  There's no moving on when your hair doesn't grow back.  You never get past looking like an unwell person.  I don't want my hair for the world.  I want it because it's part of me and part of who I am.  As I move past the treatment stage and see all the other breast cancer patients I recognised at the hospital getting better, growing their hair back and regaining their life, I still look horrible.  I get the consoling platitudes about how it's better to be like this than dead.  Other people in this situation don't that say though.   

I am quietly wondering if I was overdosed. I had terrible burns, terrible skin symptoms and now alopecia which is looking permanent to an unknown degree.  Did they give me too much?

Thanks for your good wishes.  I am hoping things improve. 

Have your eyebrows and eyelashes grown back?  I hope so.  I thought losing them looked worse than losing my hair on my head.  It's sad your hair hasn't grown back but better to be alive than dead.  Did you have beautiful hair you loved?  

Some woman just go out in public bald.  I did it a few times, no one stared or commented.  I thought it looked quite brave, distinguished and funky.  It helps if you have a nicely shaped head.

I found stretchy little hats much easier to wear than wigs, I had two wigs, neither were very flattering and one was uncomfortable.  I am keeeping my hair very short now it is growing back.  My hair is also very dry like yours, beforehand my scalp was oily and I washed my hair everyday. 

We are brave amazing women who have undergone perilous treatment.  We don't owe the world our hair.  

Hoping your our hair grows back soon.  

How great to find oncologists that feel it's important.  I have been getting the impression that it's not something that was even previously considered.  There seems to be an attitude that we should be happy to be alive and it's ungrateful to feel depressed or be unable to deal with the new and horrible identity that feels so wrong.