I recieved 3 sessions of this drug and four years later my hair hasnt returned.
I have been disfigured by this drug and lumbered with a financial burden of constantly buying wigs and there is no price on my distress.
Since i started my campaign, i have joined a group of women with the same disfigurment and our group is increasing every week. We are constantly coming up against brick walls - everyone it seems wants us to shut up! TOUGH.
I have asked Sanofi Aventis to support me financially but they refuse to do this.
Please feel free to email me on shirleyledlie@hotmail.com
http://www.youtube.com/watch?v=wYCgYl7VSJ8 WATCH MY YOUTUBE MESSAGE TO SANOFI AVENTIS.
Nov 5th
I have now made an offical complaint at the hospital were i was treated. Its not a complaint about my doctors but about the damage my treatment has done. We shall see what happens.
........................October 13th WWW.breastcancercare.org.uk
The mods finally replied to me asking me to repost my info re 29th Annual San Antonio Breast Cancer Symposium. I did this BUT some clever Nursing team (so what are they? nurses oh yeah that explains their lack of knowledge about this subject) have to add this bizare paragraph. No wonder the NHS is in tatters if this is a good expample of the nurses.
Poppy (BCC) says on 13 Oct 2009 09:49
Dear AllThe nursing team have asked that I post this message for clarity re the above post from pineapple.
The above was presented at the 29th Annual San Antonio Breast Cancer Symposium, in 2006, as a short poster presentation. Because of this, it is difficult to comment on the quality of its content, and to our knowledge this work has never subsequently been published in a peer reviewed medical journal.
Which just goes to prove that they all know jack shit.
Poppy, if you are reading this for your information it WAS and is widley known about. Which just goes to show what a load of wankers you really are.
UPDATE OCTOBER
The website www.breastcancer.org.uk will not publish any of my posts on their forum. I have asked them were my posts are and they refuse to reply to me. All this from a caring breast cancer charity. You can make your own mind up about their attitude, as i have, they are a joke and have INCORRECT information on their website. They know its incorrect (i have emails proving it) but they want to pick and choose which nice pink fluffy bits to tell you! How patronising.
UPDATE JULY 7th
WWW:BREASTCANCERCARE.ORG HAVE JUST EMAILED ME; WELL ACTUALLY KAREN WILLIAMS: just what i expected really - a penpusher (WHO KNOWS JACK SHIT BOUT HAVING CHEMO) who has gone back on her word to change the wording on their chemo info pages. THEY INSIST ON KEEPING THE TOTALLY INCORRECT INFO AND WONT CHANGE IT.
SO; IF YOU USE THE BREASTCANCERCARE.ORG WEBSITE FOR INFO REMEMBER THIS ITS NOT ALL CORRECT! THEY KNOW IT BUT PATRONISE US INTO TELLING US WHAT THEY WANT US TO KNOW.
Update June 15th
Havent posted anything for a while. Been busy on holiday :-) and working behind the scenes on the never ending saga of living without hair.
Saw my onc who told me permanent hairloss in France is now at full flow! couldnt believe my ears. Thats all i want to put on here now but if you want to know more please email me and i will tell you the very intersting happenings!
For legal reasons i wont be able to put much more on this blog but i will report anything that i can.
Please keep emailing me ladies, and if you want to join the other blog i have made for anyone else suffering this disfigurment email me for the details.
April 3rd -short update
Two days ago i created a video for youtube with the help of my daughter - please watch it and plenty of clicks ladies.You must watch till the end to see my message to Sanofi Aventis
http://www.youtube.com/watch?v=wYCgYl7VSJ8
Sorry dont know why its not worked as a link so you will have to just copy and paste it
Updated 14th March
Have been doing as much research as physicly possible. Found out some interesting and outragous info!
Acording to the top Biotech company in Sweden.....wait for it.......6.3% of patients recieving Taxotere will suufer from permanent Alopecia. The figure has to be higher because that wont include people that die or start other chemo regimes before they are included in the figue. Truely amazing!
Its no wonder sanofi Aventis want to keep this hushed up.
Naming & Shaming
wwwbreastcancercare.or.uk - promised to update their info this year - i am waiting
Macmillan website - said they would be updating later this year - i have tried to contact them again only to have my email returned!!!! i have entually got through to someone and awaiting their reply to my question WHEN? I am being ignored by whoever runs this site too!
Christies website - said they would put it forward for discussion but no response or change yet. I have contacted them again and have been ignored!
NICE - i am waiting for a repsonse after sending required forms.
I want cancer websites such as Breastcancercare and macmilan plus Christies online info to change their incorrect statements that hair always grows back. Then patients will see what websites contain the correct and up to date info.
BRIEF HISTORY
It started in Aug 2005 when i was sent for a mamograme after finding a lump.
After the x-ray i was taken in a room for a scan (echographie here in France), i was told there and then it was something that had to come out.
I went home and had to wait to see surgeon and then went for a core biopsy.
It all came back possitive and had my lumpectomy in Sepetmeber.
When i went for the results i was told it was
Grade 2
Stage 2
Prog +++
Her2 neg
1 node pos but this was a small amount in one node and it was encapsulated.
2 cm
I was told i would start chemotherapy in Oct and it would consist of
3 X FEC
3 X Taxotere - which is the latest drug (it was at the time)
I was told the Taxotere ( Docetaxel) would cause complete hairloss but would return and not to bother with the cold cap as it doesnt normally get results with taxotere.
After my second chemo of taxotere my hair started to return, very exciting!, but when i saw my oncologist he told me not to get too carried away as it would all come out again after the last chemo. He was right it did.
Three months later, at a check up, they were abit baffled as to why there was still complete hairloss. I still didnt worry at this stage BUT after another 3 months with about 3 hairs on my head i started to panic.
On my next visit, he told me he had reported it to Sanofi Aventis and they said 'yes, it can happen but rarely' GREAT ! My medical team were so suprised as they said they had never seen this happen before.
THE TRUTH
Had i been told i would be left disfigured i would have asked for a different chemo drug.
Had i been told it was a possibility it would have been my choice to give it a go.
Had i been told it wouldnt have been such a total shock. But it still would have been MY CHOICE.
Oncologists are still telling their breast cancer ladies their hair will grow back. They are NOT being told permanent hairloss CAN and DOES happen with Taxaotere.
Aloplecia can hapen, it has with me and others and the more Taxotere (Docetaxel) is used the more Aloplecia will happen.
JUSTICE
So, i wrote to Sanofi Aventis, Isabelle Pignot, and asked them to pay for best quality wigs for me as i am now severly out of pocket. Mme Pignot Isabelle replied saying 'no' and i then replied asking them for the figures of eactly how many women this has happend to. I did not get a reponse.
I have left it a year ( they probly thought i had gone away or died BUT no i am still here ) and now have a campagn manager !
WATCH THIS SPACE.
I will put all my correspondance with Sanofi Aventis on this site so you can all read it. I am afraid its all in French but i will include a translation
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