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Ugly Monster

pineapple
Member

Re: Ugly Monster

Thank you Annabel, i am sure you can understand my fustration when i am constantly met with a wall of silence. It makes me paranoid! 🙂

Guest
Not applicable

Re: Ugly Monster

Dear Pineapple

I am sorry that you haven't received any response to your email. I will highlight your post to both our nursing team and our publications team.

Best Wishes
Annabel
Moderator

pineapple
Member

Re: Ugly Monster

I would like to add that all the sites i have looked at, INCLUDING this one, state in their 'side effects' that hair will grow back. I have emailed all these sites explaining that their info is wrong and misleading and can they correct it. I have offered to send them the letter i have from SA saying that permanant balness can happen, All of them have ignored my emails including this site.
Theres seems to be a blanket of slience/secrecey about it and cant understand why. You would have thought a site like this one would like to inform its users of the truths instead of the untruths! So, what else are they misinforming us about?

pineapple
Member

Re: Ugly Monster

Here is letter which i will send recorded tomorrow

WITHOUT PREJUDICE

Shirley Ledlie – Taxoterre – Permanent Hair Loss

I am writing to you as I have now taken up the case of Shirley Ledlie. As you may know from previous correspondence with her (which I have attached), Mrs Ledlie took Taxoterre three years ago and her hair has not grown sufficiently well since then. She is left in the unfortunate position of needing to wear a wig when she leaves her house, but without the resources to pay for a wig of sufficient quality.

This has left her feeling disfigured and embarrassed about going out in public.

The French health authorities have only provided money for a poor quality wig, and her mutual have made a one-time payment for an “extreme comfort wig”. Since then the condition of this wig has deteriorated and the situation has become critical for her.

So, we intend to start a campaign with the following aims:

To make the general public aware of what can happen, and has happened to Shirley since taking Taxoterre. This will be by creating a website, publicity in newspapers, television and radio in the UK, United States, Germany and France.

To ensure that health organisations change their publicity and documentation to make people aware that hair loss may be permanent. We have already identified a large number of organisations that say such things as “your hair will always grow back”. We wish to make people aware that this is not always the case and that they must carefully consider if the risks if they take Taxoterre.

To provide a forum and support group for those who have suffered permanent hair loss from Taxoterre.

To campaign for health authorities and pharmaceutical companies to provide continuous after care including the supply of “extreme comfort wigs” and whatever treatments are available for improving hair re-growth.

Clearly, this is something that Mrs Ledlie has tried to avoid and would prefer not to have to proceed with. All she wishes for is to live a quiet, normal life where she can participate in normal activities without the glare of publicity.

So, in an attempt to negotiate a settlement with yourselves, we are offering you this last opportunity to avoid the publicity that our campaign would cause by reaching a settlement with Mrs Ledlie. We feel that we are not being unreasonable, merely asking that you help to provide a regular supply of extreme comfort wigs and scalp treatment until (and if) her hair grows again.

If you are unable to respond to our satisfaction by 7th March 2009 then we will commence our campaign.

pineapple
Member

Re: Ugly Monster

Hi, alison i wouil very much like the info please.
I think my letter is being posted to SA this week so i will report back if they bother to reply to me as last time when i asked how many women it happened to they went silent which obviously means its more then they want us to know about. I just hate all this cover up, it feels like most oncs are in on it too.

narnia
Member

Re: Ugly Monster

Oh Maureen..........................I had mine done in a similar booth yesterday, as i need a new passport for my trip to Holand in March.And yes, it was a frightful photograph, i looked like something from The Addams Family!!! Mine got torn up and dumped in a nearby bin, and i shall have to have another go!

GrannyScouse
Member

Re: Ugly Monster

Hi, Ladies

Haven't read this thread for some time, but it certainly seems to have changed direction and I'll get around to reading it all but not just now.

Thought of this thread this afternoon when I went to have passport photos taken. I'd taken care with my new hair (still haven't got used to styling it and often forget to brush it!!) and off I went to the photo booth after grocery shopping. Well, good job I wasn't wearing a wig or the wind would have blown it all the way into Stockport.

Only had £20 note in my purse and booth required £4. Went to get it changed. Queued up for ages but was told to go to customer services. Girl took no notice of me so in the end I asked for service and she asked if I was all right and I said no and could I please have some change. I'm starting to seethe by now. She went to hand me the money and dropped it and took ages gathering it up. Seething even more. Took the money. Followed directions in booth about lining up the seat properly but found out I was turning it the wrong way and ended up nearly on the ceiling. Turned seat right way and eventually my eyes lined up where they were supposed to. All the time an automated voice was telling me not to put money in yet and I was trying to read instructions without glasses which I was told to take off.
Automated voice told me I'd have four photos. Don't even think about smiling. Must have neutral expression. First photo appeared. Was I happy with it? Press yes or no. Well no, actually, who could be? I pressed yes because realised I wouldn't look like Kate Moss in next 10 seconds. Didn't realise all four photos would be that one!!

Talk about ugly monster! Oh, they're going to die laughing when I send in my application to have blue badge renewed.

Good luck to us all.
Maureen xx

flyright
Member

Re: Ugly Monster

This is a really interesting thread, and I think in particular Jane's comment a few pages back is really profound. What a brave lady.

Pineapple, I wish you all the luck in the world with your search for some recompense from the drug company and I hope you can find a way of either getting your hair to come back or finding another solution that helps you live with what you have.

This thread is a reminder of how harmful and dangerous chemotherapy is - though I will never believe it is worse than the disease itself. I could not have taxotere because I had an allergic reaction to it. I very much wanted to have it - even at the risk of losing my hair permanently - because it is an excellent drug that is prolonging many lives that otherwise would have been lost.

Alison
Member

Re: Ugly Monster

I have just met up with a relative who has been having treatment for thinning hair (not BC related). She told me that at the clinic in London where she went ,several ladies were treated for total permanent hair loss caused by Chemo.
From what I can gather, a mesh is fixed to your head and real hair is woven through it. It looks and feels real and lasts 2 years. The lady who runs the clinic has campained for NHS funding to treat these ladies with success. She also runs a support group.
I know you live in France but the treatment can be done in a day. She also might know of a clinic in France offering similar treatment.
Please let me know if you want me to PM you with the details.
Best Wishes
Alison

pineapple
Member

Re: Ugly Monster

I agree with you Bahons, everything in moderation. Janet Plants cancer came back so it didnt do her much good.
I do always buy Bio milk and i have never eaten alot of red meat. Alot of chinese medicines contain things that i am just not sure about so dont really want to go there. The Asian diet, is also different from our western diet so whos not to say that their low BC rate is from something else.
I certainly couldnt go dairy free but think that eating bio milk and free range eggs from a lady i know (so know theres no antibiotics and hormones there) and i would buy bio meat if i could afford it.

Bahons2
Member

Re: Ugly Monster

We're wandering off topic here, but's that's usual with long threads!

I agree with you, Cinderella in that I think we are, to a large extent, what we eat and I do my best to eat a balanced diet with good quality ingredients. However, I've never seen what good excluding a food, or group of foods, is likely to do for me - apart from induce cravings I didn't have before! Everything in moderation as far as I'm concerned.

I don't know the precise ins and outs of Jane Plant's book, but I have heard that the jury is still undecided on her theories. Yes, incidence of breast cancer is lower in Asian countries, but this is where a low/no dairy diet has been followed from birth. Changing from a Western diet to an Asian one later in life may be shutting the stable door...., I don't know.

I'm the same as PIneapple in that I live in France, where, despite a large dairy and meat component element to the diet here, bc survival rates are better in the UK. As I see it, bc is a great big jigsaw, with diet just one of the pieces.

BTW, living in France, I've realised that one country's complementary medecine is another's standard practice! Here a product called Endotelon, taken for lymphoedema, is readily available at pharmacies or on prescription. Only available as a 'health' food product in the UK.

Just a few stray thoughts....

S

ForumMember
Member

Re: Ugly Monster

Re; the suing, well, as a lawyer, i think the best way to go about it would be as a class action in negligence. They should at least have to warn people of possible side effects from these drugs, as a bare minimum, and correct percentages as to how common the side effects are. I wasn't warned i could get osteoporosis from chemo. If people still want chemo after being warned, that's fine; but they have to warn people - if they didn't have to, we wouldn't know what a drug could do to us and they would have no accountability/responsibility to the consumer.

ForumMember
Member

Re: Ugly Monster

actually, i thought life probably wouldn't be worth living anyway if i couldn't have chocolate anymore (at first) and refused to give it up for months and months - it was the only bad thing i kept eating; but eventually i stopped craving the taste so much, and now can resist a lot easier. And really when it comes down to it, i would rather live than eat chocolate if that really is a choice i have to make.

ForumMember
Member

Re: Ugly Monster

Re: the no dairy thing - i totally understand how you would not want to give it up living in france (i would love to live in france - just for the food :)) - but i would recommend that you might want to read a book by Professor Jane Plant called Your Life in Your Hands, which is about her thoughts on dairy, and the china study book, just incase they influence your decision. I used to love cheese (especially camembert) and chocolate and all that stuff ( i was the biggest sweet tooth around, and loved cooking) but i started this very strict diet, and although the transition wasn't easy, now i don't crave that stuff anymore, and feel a lot healthier. (i even drink herbal teas - i can't even believe it myself really) It wasn't easy, but i wouldn't go back to how i ate before, and i am probably the least likely person to ever give up chocolate or dairy that i know of (which anyone who knows me would confirm). I decided i couldn't take the risk in case there was something to all the statistics about dairy and cancer rates (countries with highest per capita dairy intake (holland, scandanavia) have the highest rates of breast cancer; while asian countries -who don't eat dairy - have the lowest).

ForumMember
Member

Re: Ugly Monster

Hi Pineapple,

I don't think you should accept it until you have tried every possible cure (i wouldn't); and that's how i feel about cancer too. I am planning of trying everything i can afford to try in the way of alternative therapies (i will go through them all if i have to). Obviously in the end, there might be something no one can change, but i don't think looking for a cure can hurt anyone. I don't think anyone should accept something they don't like until they are sure they absolutely have no choice about it. and even then there's always willpower, or a chance that you could cure yourself, i think the power of the mind is pretty strong.

Have you seen a chinese doctor about the hair? I would really try that - i think mine's really good, i really think he could probably cure a lot of things; and i also found qi gong (meditation) and acupuncture really theraputic. For an example of hte power of chi energy, if you go on utube you can see an asian doctor using chi energy on kids to cure them - he seems to be able to generate electric shocks almost with his hands; and also he sets fire to this ball of paper with the heat from his hands (which is pretty cool to watch). I didn't necessarily believe in this stuff, but i can feel the acupuncture helping me - and i now believe there are energy systems in the body that our physics doesn't really understand yet; but that the chinese medicine people knew about millenia ago. I also believe in the chi heat energy, because my chinese massage therapist can make his hands boiling hot when he puts them on my back to give me chi energy. They really feel much hotter than you could get them by friction alone... so who knows?
I'm converted now 🙂

and i think i said before, after chemo i felt like i'd been run over by a truck. i felt absolutely awful. Once i started taking his herbs i found i had all this energy i didn't have before and could get up and do things. I ran out of them recently for a couple of weeks and just started feeling lethargic and awful again. Now i'm back on them and i feel really good. (well much better than i would otherwise feel).

Lomalinda
Member

Re: Ugly Monster

That’s great Pineapple,

Once you get your letter off, you can then hopefully enjoy the holidays....
May 2009 be the year you kick A$$!!! LOL!

Lomalinda
XXX

pineapple
Member

Re: Ugly Monster

My campaign manager (i like saying that lol) has written a final letter to go off to AS on my behalf and i have to say its great!
Just getting it translated into French and then they have one month to reply.
If this doesnt work nothing will and i will have to hit them were they wont like it.

pineapple
Member

Re: Ugly Monster

I have just heard from my contact in USA. She has spoken to her onc who has been in contact with AS - they (apparently) have told him that up to now 8% of women have now reported this ! hummm and they say its very rare?

pineapple
Member

Re: Ugly Monster

Sorry that should say 'but we shouldnt' not should.

pineapple
Member

Re: Ugly Monster

Yes, but we should be told 'it will def grow back' when there is a possibility that it wont!
I am not trying to sue them for millions, i just want scalp treatment paid for and wigs. If what they say is true and that it happenes very rarely then it wont cost them much to funbd our wigs will it.
Do you think its right to be lied to then about the possible side effects?

FizBix
Member

Re: Ugly Monster

I know this is going to irritate you immensely pineapple but on the one hand i wish you the best of luck and hope you get your wig(s) and on the other i do worry that no-one has all the answers and if we all expect a perfect resolution to everything then we could end up with less treatment as a result as the doctors etc. would be too scared to treat us for making a mistake ...life isn't perfect and things do go wrong - as we all well know!

love FB xxx

Bahons2
Member

Re: Ugly Monster

Good luck, Pineapple

Looking forward to the updates

X

S

Lomalinda
Member

Re: Ugly Monster

Hi Pineapple,

I’ll be really interested to see how you get on; & glad that you have someone who is working with you on this. Good luck & stay strong! (and keep us posted…)

Lomalinda

XXX

Marilynleah
Member

Re: Ugly Monster

Good luck

Marilyn x

pineapple
Member

Re: Ugly Monster

I have had my meeting with my campaign manager. He was brilliant and has suggested things i wouldnt have thought about.
I dont want to post too much on here as you never know who is reading these posts. But one person we are going to contact is our health minister here.
The French health system works differently to the UK and i fall into a catogory that doesnt exist YET, so that will be interesting. Especialy as the more this drug is used the more cases like me are going to appear.
There is no point in trying to sue them, you cant beat their inhouse lawyers so theres no point. So there is only one thing they will not want so have to go that way.
I will keep you informed from time to time to report how this is going.

pineapple
Member

Re: Ugly Monster

Jane, i read all your threads and value your input and everyone elses.
I knew they wouldnt buy me a wig as a kind gesture because of how it would look to them What you say about their written side effects. Firstly we are not given these so if you dont have a pc how are you supposed to know - its up to the onc to tell us what to expect. The oncs are not telling anyone! Apparently their side effects have been changed in the last year to say what they say now. A woman in the USA emailed me to say a couple of years ago they changed their wording because she also got made permantly bald by their drug. I have Taxotere 3 years ago so i have no knowledge as to what they were reporting then.
But anyway, i dont one one wig off them, what will i do a year later? I cant buy the cheap ones because they are too unconfortable for me - i have an extreme confort and can only just cope with wearing that but now its gone all hard and it feels like i have a coconut mat stuck on my head and rubbing on my neck. The wigs thing is an isuue but not THE issue because i want scalp treatment to encourage my hair to return.

pineapple
Member

Re: Ugly Monster

Its mostly the practical side of things that get me down - there usually something every day AND todays near catastophie
I have just come back from a funeral, afterwards we all gathered outside to chat. I was talking to a woman i havent seen for 2 years - she stroked my hair (wig) and got her fingers caught and almost pulled it off.
I could have all the counciling in the world but it wouldnt make me any happier about these everyday occurences that make me HATE MY UGLY BALD FREAKY HEAD. Now i even sounds nutty to myself now.lol

Lomalinda
Member

Re: Ugly Monster

Pineapple!

In the last few months, I have had a taste of being where you are now. I had, I would say ‘major discomfort’ with swelling/fatigue after finishing with neoadjuvant docetaxel. It was mainly in my legs, (greatly affecting my mobility) and on my back and my face. Yep, I would say that I looked like a freak. Big moon face, hunched over & hobbling down the street…and of course, bald. I was frustrated, angry, depressed, etc.

I felt let down by my medical team. I complained on the threads here a lot…. I tried to console myself with the fact that only a few years ago, people were considering themselves very fortunate to even get this drug. Anyway I had a breakthrough one day after some sessions of acupuncture. It was as though something had been fixed. It started to occur to me that maybe I had been somehow clinging on to the chemo phase and was not ready to move on to my surgery…or maybe the swelling just started to go away of its own accord? I’ll never know.

Now I am NOT posting to suggest that you should do ANY kind of therapy, nor am I suggesting that you are a bit looney and your predicament is somehow your own fault! But I do think that you are trapped or stuck, and that you need to do whatever you can to move forward. If that means focusing your energies at the drugs co. then go for it! You never know what your efforts might bring back to you. But please, please, stop doing yourself down! You are a survivor, even if it’s not evident to the people you pass in the street. It upsets me to think that one of us (you) should feel any kind of shame about themselves whatsoever. Obviously, the title of this thread is testament to the strength of your feelings, and I find that sad and upsetting too.

Right now I am still getting through treatment. As a (relatively!) young woman in a long term relationship, my hair, my breasts, my looks are very important to me.
And I’m waiting to see what the final results will be from all this.
I admit I have had times where I’ve felt uncomfortable in public, but mostly, I hold my head up & walk proud. I love wearing make up and I usually make time before I go out to do my face up. I see it as an expression of who I am.

I also know that the chemo has done something to my eyesight and I have the nerve damage to my hands and feet which many others have encountered. As an artist, my eye to hand coordination is crucial to my quality of life. I hope to God that this is not permanent. I want to know that long after my looks go, I will still be enjoying my life through my work. That, and having my general health so I can spend as much time as I have left with the man who has supported me through all this.

One thing you’ve done Pineapple, is to generate a thread where people are posting some very interesting and profound sentiments. This is a good thing! I too, have been coming back again & again to this thread, which is probably why this post is so damn long! At the last stages of my treatment, it has given me an opportunity to reflect on where I’m going next. So thank you, we’re with you, but I’m sure you know that already!

Lomalinda

XXX

JaneRA
Member

Re: Ugly Monster

I keep coming back ot theis thread and thinking I should keep my mouth shut..but its niggling me and now I'm beginnng to feel angry and frustrated.

I really am terrbly sorry pineapple that you have lost your hair and it may be permanent. Cnacer and its treatments can rob of us so much...not least our seflf esteemn and sense of self worth. I know I rail and spit at the world at the monent..I have huge reservoirs of unresolved anger and sadness for the life I might have had, for what might have been.

I am struggling through no 30 something chemotherpay treatment...taxol..taxotere's sister it happens. I am bald for the third time in five years. In the overall awfulness of whre I am I put up with my baldness...don't like it...but the wig is OK and I have a partner who says she loves me still despite yes often feeling that my body is disintegrating in front of my eyes...my arm and hand are swollen with lymnphoedema...my neck and chest wall are swollen with cancer, I have a voice which is insecure and an eye which looks wonky.

But I know comparing my lot to others who are worse or better off than myself won't make me feel any better. Somehow I just have to find a way of living with what I have to live with...bald head and tight size 16 jeans seem the least of it though.

I think it would have been nice if the marketing dept of the drug could have done a little freebie for you pineapple..a gesture of goodwill...but big companies probably won't risk that. Looking at the literatuee on taxotere, I see the information is vague....what most lieterature says is that hair loss is generally temproary (which it is), no pronmises it isn't permanent.

Chemotherapy is strong stuff.. more women are left with unacceptable side effects than perhaps we choose to think about...I know for example women left with awful chronic fattigue syndrome...for years...in my book worse to live with than a bald head...but the as I said the afflictions we acually get feel the hardest perhaps.

Even if you don't get some money from the drug company can't you treat yorself to some scalp treatment. How much did you used to spend on your hair?..I know I spent much more when I had hair than I do now I'm bald. Treat yourself...don't wait angrily for years for a pay off you'll probably never get.

I can feel you turning your anger against yourself and that is so horrible and unproductive. I so hope you can find a way to feel better about yourself...please stop calling yourself a freak...its harsh and hurtful to read...as Katherine says...none of us are freaks...though I guess most of us know the horrible feelings that make us say such things sometimes. Most of us have wept and mourned in front of the mirror. Some of us with cancer have to put up with looking like cancer patients you know.

I so hope you can find a way to live happoer with your bald head...honestly in the scheme of things..in the scheme of life there really are worse things.

Jane

KatherineM
Member

Re: Ugly Monster

Pineapple - understand all you say about drug company - but I think alot of us are reading your posts and saying to ourselves you are NOT a freak, you are a women who has been effected by your treatment and that is it. none of us, one breasted, or no breasted or bald headed or, weight gain from chemo or no lashes or whatever are freaks. i feel this rally strongly and hope that you can too,

pineapple
Member

Re: Ugly Monster

I dont want to sue the company in particular i just want them to fund my scalp treatment and buy me wigs! thats not much to ask is it!
I also want them to stop the secrecy and deciept to other women.

ostrich
Member

Re: Ugly Monster

Pineapple,

You don't have any choice but to accept it. That is who you are now. Easy to say where I am but its the truth. Suing the drugs company etc may help women in the future but you are where you are and you may never be any different. You need to find a way to accept who you are now. What other choice do you have?

xx Meant and sent with love, O

pineapple
Member

Re: Ugly Monster

Excatly ostrich - i see it every time i glance in the mirror! I dont want to except it - why should i?
I will never except it. Nothing anyone can say, no matter who they are, can make me like what i see - a freak.

ostrich
Member

Re: Ugly Monster

Pineapple,

Please don't shoot me down in flames and I am not saying don't go for it with suing the drugs company or getting publicity or whatever you need to do to make this public but, as far as you coming to terms with your potential permanent baldness have you thought about contacting other permanently bald women to see how they cope. I know Gail Porter didnt have BC but she is the most famous bald woman I can think of and whilst she portrays an imagine of being super confident and accepting of her baldness given her previous career I can only guess she had a very hard time adjusting. I have read several articles by her over the years on how she copes with her alopaecia. Maybe she can offer some support?

I suffered with intermittent spots of alopaecia prior to the now chemo induced baldness and my Onc couldn't say what effect the chemo would have on my tendancy to alopaecia - ie whether it would have no effect and I will have newer better hair after or none. I can't think about the none yet and will wait and see and pray to God I don't end up permanently bald! If that turns out to be the case then I am sure I will have more of an insight into where you are but IF it does happen I know I will have to find a way to live with it cos what is the choice?? Having big bald spots on my head which would appear for no reason and go away when they were ready was a huge thing for me to cope with and I never knew where it would end or if it would (it didn't I was just happier that the spots were more at the back of my head in recent times so I could pretend I was okay as they weren't visible when I looked in the mirror).

Wishing you the best of luck and, no offence, hoping I don't join you.
xx

pineapple
Member

Re: Ugly Monster

I wouldnt ban it, i just want an end to this secrecy, and give women a choice.
If i had known that it would have happened i would have asked for a difference chemo.
First they say i am the fourth woman in the world for this to happen to and then i find 3 or 4 on a site in the USA, so how many more. Why are they lying to everyone. I think we know the answer to that!

Bahons2
Member

Re: Ugly Monster

I don't think banning Taxotere (which I've just finished) would be a good idea! Given a choice between no hair (and it may yet happen to me because mine shows no sign of growing back) and a rather more uncertain future, I know which I'd pick. You too, Pineapple?

Good luck with your meeting tomorrow. I hope that you will feel a lot better once you get on the warpath!

Snap, aroma, 'small chance of a slight swelling called lymphoedema' was roughly how the my 'helpful' hospital leaflet put it!

X

S

aroma
Member

Re: Ugly Monster

hi pineapple .so sorry your having to go through all this ,and yes i think that nows the time to spill all to the press ,its amazing just what a story in the media can bring ,so i would say you go girl and lets hope someone will listen to you .they certainly dont tell you about the side effects of the chemo and then its often too late when we are stuck with whatever is left of us after .myself i was warnwd about lymphodemia but just not how much it would effect my life ,and yes ive put on a good stone of weight now im on arimadex ,we as paitients need to be told of these things ,after all its our bodies that will bear the brunt of it . wish you well in whatever you decide to do ,have a baileys on me !!! much love .lynn xx

pineapple
Member

Re: Ugly Monster

hi cinderella, i started to see a slight improvement when i started to take brewers yeast, but then after a little spurt that was it till i started this nanogaurd shampoo and the same thing happened. I will try the folic acid though. I couldnt go 'dairy free' but i do always buy organic milk. I love in France and theres no way i could give up on the cheese.lol
I dont want to eat soya etc because my BC was pr +++ so dont want to eat phytoestrogens if i can help it. Alot of pulses and the like contain alot of them so just like to eat a balance of everything. The brewers yeast i still take as it gives me lots of energy.
I have my first 'meeting' with my capaign manager tomorrow so we can talk about where to go next. But i think its right about going to the press!
Does anyone know where i can buy a 'thin Suit' like the one Fern briton wears on the advert?

ForumMember
Member

Re: Ugly Monster

I think you're so brave. with the people staring, i really used to hate it when i was wearing a scarf/wig; but i'm also one of the worst people for staring - usually i don't even realize i'mdoing it, and it's usually just pure curiosity and interest with nothing else attached. If some people are like me who stare, then some of the emotions i have are admiration etc - sometimes i think people will like or respect someone more or even think they're cool, if there's something different about them. i try to be aware of it now and not do it, cuz i know how much i used to hate it myself. I think it's cuz we don't know so many people in a city, whereas if you knew everyone, then i don't think people would stare because they wouldn't be interested - cuz they'd know who you were and the story etc (like your family don't stare, cuz they know all about it). I know all this doesn't help, cuz i would hate it if that happened to me. But i would try the folic acid and chinese herbs, incase they help.

you're right -everyone should be warned that the hair loss could be permanent - and maybe that particular drug should be banned.

pineapple
Member

Re: Ugly Monster

Thanks one and all. Please dont get the wrong impression of me.
I do get on with me life, but by doing that my headscarf/wig/baldhead is ever more to the forefront of my life because of this. If i did sit at home 24/7 then i suppose that would be ok. I vowed not to let BC ruin my life or stop me from doing stuff i love.
We go on loads of foriegn holidays -I LOVE swimming but as there isnt a pool where i can swim unless i am trying to swim with millions around me (arrrgggg)its not poss and i feel self consiouss anyway in a wet (feels horrible on head) headscarf. I wont wear a swimming cap - god i would look like an alien!
Every Monday night i go to belly dancing, i walk most days around our lovely lake (got 4 dogs) and i am a beauty therapist and have a little treatment room where i have regular clients.
But its by doing all these things that are a constant reminder that i have to keep my wig or scarf on. I do fly alot and servaral times nearly lost my scarf getting off the plane or goig out to get on it - why is it always windy?
I cant wear a polo jumper or a scarf around my neck because it pucshes my wig at the back and pushes it up slightly argggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggg
Theres always bloody something.
I want this company to pay for my scalp treatment- no matter what the cost- untill i have my hair back, i want to know why women are still not being informed and are still being told by their oncs that hair always grows back. This non disclosure is WRONG.
The more this drug is used the more women are going to be left with this disfigurment without being warned of the possibilities.
We are being lied to basicly.

ForumMember
Member

Re: Ugly Monster

Hi Pineapple,

I read in a book by Professor Jane Plant (Your Life in Your Hands) that her and friends of hers who took a lot of folic acid during chemo didn't lose their hair (eating a lot of green vegetables several times a day, and wheat grass/barley juice too is a good way probably to get folic acid) and i am wondering if maybe you eat a lot of folic acid whether it would have any beneficial effect for you. (couldn't hurt to try it as vegetables/folic acid is healthy). I have read that during chemo the body is deprived of all its folic acid (which is usually essential for the body to function properly).

Another book i really highly recommend is The China Study by Dr Campbell - it talks about how diet can help against breast cancer - particularly eliminating dairy products and minimizing meat intake (mainly eating wholegrains, vegetables, fruit, nuts, seeds, beans, corn (on the cob), etc). This is also a good way to lose the post chemo weight. I gained about 5 kilos during chemo (in (probably toxic) fluid i think) and i think it's really important to get rid of that fluid gained during chemo (i have heard a nurse say that) - i think the diet that either Jane Plant or Dr Campbell recommend will help you lose this weight in a way that's not extreme or dangerous, as you are still getting protein from beans/chickpeas/lentils etc (other sources) and you can probably still eat some eggs/fish if you're not vegetarian. I have also read that eliminating all dairy products in your diet and replacing with soy or other substitutes can in itself cure cancer. I'm currently trying this, and hoping for the best.

I lost my hair during chemo and i felt like a freak - wished everyone would stop staring at me. I had no idea hair loss could be permanent & i think they should have to warn people of that as a possible side effect. I think you should sue because they should have warned you esp. if they knew of other cases where it happened.

I got osteoporosis after my chemo, and i am convinced that the chemo caused it (although my oncologist won't admit it). I'm 28 so it's not likely to be anything else. Again, Jane Plant talks about the mainly vegetarian/wholegrain no dairy way of eating (which a lot of asian countries basically follow) being good for osteoporosis aswell. Interestingly the countries with the highest dairy intake also have the highest rates of osteoporosis (this information is mainstream).

If at all possible i recommend going to a chinese medicine doctor. Since i started taking chinese herbs after my chemo i have a lot more energy and my hair has gotten a lot thicker than before i was on the herbs (and wheatgrass juice). It might be worth a try.

josyemarie
Member

Re: Ugly Monster

Pineapple I had an ongoing situation once, I thought I was on my own,fighting a loseing battle,It went on for ages until I mentioned going to the press! It made them sit up and do something - infact they sorted it out el pronto!

FizBix
Member

Re: Ugly Monster

nice one PinkyAnn - I agree - love FB xx

PinkyAnn
Member

Re: Ugly Monster

So shocked and sad to read this thread, Pineapple.

You can have a go back at me if you want but it sounds to me like you're turning your anger at the drug company back on yourself. It's those b*****ds that should have anger directed at them - NOT YOU!!! I don't think you'll ever be happy in your skin, or get on with living your life, until you stop directing anger at yourself.

I don't know what interests you have? Choccy and Bailey's sounds yummy...but why not get a good mate round to share it and a good gossip? A good mate really will not give a flying f*ck about you being bald. Are there other things that you like but don't need hair for? Things like walking, horse-riding, sailing, swimming, cycling? (Senior daughter has come in and said I should suggest you opt for something that EVERYONE looks cr@p doing!) I suggested those because a) wearing a hat is a normal thing for those activities and b)you don't have to involve other people if you don't want to and c)they are the sorts of things where the fashion police don't come round! Our pony certainly didn't give a damn when I was bald...but she knew I always had apples in my pockets and kind words for her. She kept me going through some dark days. I bet if you walked a friend's dog everyday, it would take weeks and weeks for people you met on your route to clock that you have no hair. Why? Cos they'd be talking to the dog first!

I'm not suggesting that going out once a week (or everyday) and doing something enjoyable will make it all better but it might give you a chance to spend a short while feeling OK/content and that might help a little bit!

By the way, I think you are quite right to avoid the Christmas parties. Dreadful things! Can't stand that whole 'enforced jollity' thing myself and avoid them - particularly anything that involves a sparkly frock!

I sincerely hope you do get some compensation but I don't think that cash alone will make things better for you.

a
x

PS Snr daughter also recommends putting on some music and jumping round the house like a complete loon when you feel particularly cr@p. It's easy to dismiss the views of teenagers but they do know a thing or two about raging hormones and body dysmorphia.

pineapple
Member

Re: Ugly Monster

Yes Cathy this is what i have thought. If i contact them again and explain that i am giving them the chance to pay for my treatment etc then i wont go to the press. Didnt want to do that really because the last thing i could face is my ugly mug in pictures but if i have to i will.

KatherineM
Member

Re: Ugly Monster

Nobody is saying you should be Ok just because there are other people who have lost their hair pretty much permanently- just pointing out that cancer is a crappy experience that has taken lots of peoples hair.

If you are going to pursue compensation - (and i am sure you have thought of this) I would think involving the press may be more productive than legal fees . remember that sanofi will have hundreds of lawyers on their payroll, but they will not want negatve press.

cathy

pineapple
Member

Re: Ugly Monster

Thanks, just cant face party's, when having chemo i didnt care that i looked like i was. I am just sick of looking like a cancer patient when i am not - have looked like it for the last 3 years and realy sick of it.
I have just read through all the posts on the USA breast cancer forum and on one post there is 3 or 4 ladies that have also had permanant hair loss from it - so its just not good enough. Women should know all the facts so they can decided for themselves.
If they refuse to fund my scalp treatment/wigs then i am going to make public this knowledge as much as poss even if it does mean pictures in mags or day time tv. They shouldnt think they can leave women disfigured and just say tough.

Allicat
Member

Re: Ugly Monster

Hi pineapple,
So sorry you are feeling so low.
I also had Taxotere but fortunately my hair is growing back.But when it had fallen out I put on a black wrapover dress(great for the figure as I too am a size 18)black tights,high heels and wore a red,white and black patterned headscarf with red jewellery.I was feeling really self conscious at the time but all my friends commented on how chic I looked.
A friend of mine(who hasn't got cancer)has just got her eyebrows tattooed and they look fantastic.They also do some great false eyelashes now.I had some on last weekend for a party and they looked so natural.
Go to all the parties,hold your head up high and sod everyone else.You probably feel that everyone is looking at you but they probably aren't.
I was walking into my local supermarket one day and saw a woman coming out with hardly any hair,so I looked around to see if anyone was staring at her and actually nobody was the least bit interested.
Also there are some great solicitors/barristers out there who specialise in medical claims who would relish the fact of taking on a big company.
I think you've got a good case,especially as the drug company didn't say about permanent hair loss.
Fight it pineapple.What have you got to lose?
Love and hugs.
Alli x

pineapple
Member

Re: Ugly Monster

Thank you for all your kind replies. Nobody on here can help me -the only thing that will sort me out is for me to have my hair back, no amount of counciling is going to make me except my horrible head- i DONT want to except it. I dont really want any wigs as i am bloody sick of them and hate wearing them, i am so sick of headscarfs too but at least they are more comfortable but then i look ill when i wear them. If i had hair then it would make me care about my auwful body, whats the point of having a half decent body with this ugly bald head stuck on top. While i have no hair at least i can comfort eat all nice foods as well as feel sorry for myself. Whats the point of living on lettuce and still be pig ugly into the bargin. No, i will not be buying a huge sparkly party dress to wear with my bloody straw wig. I will stay inside and munch on chocs and drink bailys.
I know this probly makes me sound selfish and vain but i am not but i dont see why i should put up with this disfigurment because there is always someone else worse of than myself. I feel for the ladies that are fighting secondaries but while i am not this is my life. The funny thing is when i had chemo and got sick of my hairs falling out into the kids food, my son shaved it off for me and i thought it was funny and liberating. Because i was so sick on FEC i was glad i had no hair to worry about - how ironic.
I did hear back from my freind last night, and he still wants to help me so he has agreed to be my campaign manager and we have a meeting this Friday to talk about the first steps. I want Aventis Sanofi to pay (what ever it takes) for continued head/hair treatment till its back and also to buy me some more bloody wigs till it happenes. I wont settle for anything less.

narnia
Member

Re: Ugly Monster

Hi Pineapple, i am so sorry to hear how you are feeling.But please....go to the parties, wear the wigs, dazzle them all with a lovely dress and sod anyone who stares.You have come through so much and are here to tell the tale! I am still waiting my op (next week) and won't know until that is done what else i have to face, but i'm going to be in here asking questions and looking for moral support from all of you.I can tell you though, with regards to your eyelashes, even if they seem to be almost non-existant................Chanel do a fabulous mascara which i PROMISE will build your lashes up into sultry, sexy ones again!!I know this because I very stupidly tried to relight an oven which had gone out (and had been belching out gas for some while!), by chucking a lighted match in to it...................result???An earth shattering BANG, which scorched all the eyebows and eyelashes off me and all the hair from the front of my head, and i had a scorched face as well.This was just before New year 2000 with all the celebrations to deal with, parties etc.............and i worked for a lovely rock star, who was treating allof his staff to a fabulous dinner at a luxury hotel.Well, i sobbed when i realised how much damage i had done to myself...........but...the hair got a lovely wash and blow dry, so it was combed and curled to disguise the damage (could this be done to your wigs so you are happier with them??), the eyebrows were carefully pencilled in, but i was at a total loss about what to do with the lashes, until a colleague suggested the Chanel supercils mascara....and damn, those lashes were fantastic on the night!! Give it a try (you might even be able to get a sample one from them to try out).I honestly couldn't believe the results and they made me feel wonderful, honestly.Please don't hide away from the world...........don't do that to yourself. sorry to ramble on, but you have really touched my heart and i wish you well with all this x