member. I am dissapointed that this site think that because Taxotere has only made a small amount (hows small is small) of women permenetly bald they dont think its in the members best interest to add it to possible side effect info on this website!
If it happned to me it can happen to anyone.
I agree - as long as it makes it clear it is a tiny percentage
Fizbix - i have info from top biotech company in Sweden.
I dont think 6.3% is a tiny %.
Hi,
I looked on the European Public Assessment Report on the European Medical Evaluation Agency website to see what the actual patient leaftlet says and it notes under side effects the possibility of: “short term hair loss (in most cases normal hair growth should return),” which I think makes clear that sometimes normal hair growth does not return. Maybe the website could use that language, since it is the official language.
Perhaps even more importantly, I think that this matter highlights real problems with the process of informed consent. The language above at least suggests that there are cases when normal hair growth does not return, so since “in most cases” could be up to 49%, I don’t think that the drugs company has been misleading. What I find troubling is that the section heading where this information appears is entitled “PACKAGE LEAFLET: INFORMATION FOR THE USER Docetaxel Winthrop 20 mg concentrate and solvent for solution for infusion docetaxel. Read all of this leaflet carefully before you start using this medicine.”
The key problem is that the NHS isn’t giving us all of the information that we should be getting before we take a medicine, but rather picks and choses what it considers to be the most important side effects. I can see why you would want BCC to change its information, but relatively few women are going to rely on BCC information alone, while anyone who gets taxotere will have to sign a consent form. Such incidents raise real questions in my mind about how informed our consent truly is. By the way, I did get the patient leaflet when I had to start herceptin as a private patient, which was the same as on the EMEA website, so I wonder if UK private healthcare providers do informed consent more professionally.
Best wishes,
Christine
Hi, I had 3 x TAX having had 3 x FEC. All the medical staff assured me that my hair would return. I actually found that, while the hair on my head did start to grow once I finished FEC, albeit very slowly, eyebrows and eyelashes disappeared altogether. Also, b4 starting treatment I was told about the cold cap by bcn but advised that it was extremely unlikely to work, that all woman on my regime of chemo lost all their hair so it really wasn’t worth it, although it was up to me. Since joining these forums however I’ve come across many women that have used the coldcap quite successfully, thinning hair rather than complete loss in a lot of cases. What I’m getting at is that, at an extremely traumatic, difficult time I for one relied almost totally on what I was being told, yet it seems that we are being told only what medics want us to know. If I had been given the stats for permanent hairloss on TAX - I agree strongly with Pineapple that 6.3% is not insignificant - I would still have chosen to have it but I would have made an informed choice. These big drug companies are clever with their ‘wording’ on leaflets and, at the end of the day we are talking about a drug that can potentially significantly help a cancer patient. Most are going to take it. I do think the company could offer SOMETHING to people that have been affected and I hope Pineapple you get somewhere with your efforts. I’m nearly 6weeks post TAX and my hair is very patchily and slowly coming back, but I still don’t know if it WILL all come back. Pat x
I dont agree that the wording 'in most cases’is sufficiant. Its misleading and definatly does not have the same impact as ‘hair do not always return’ for example.
In France permanent hair loss is fairley wide spread and i am sure it will come out soon that its actually ALOT higher than 6.3% but thats all i can say on that at the moment. Said too much already.
In France its just all coming out but because France have been using Taxotere in primary DX a couple of years before the UK the full impact has not shown itself in the UK yet - it will make no mistake.
Sanofi Aventis also know this is going to happen because thats why they ‘dont keep this info’ even when oncs report it to them! so why do you think that is?
I have reported them to the EMEA also for not keeping this data as they have to by law as long as the drug is being used. If they really are keeping the stats then why do you think they are lying about it?
The company even lied to my onc when he reported me and there is proof so SA are not going to get away with it all.
I have many freinds in the USA with same problem and they tell me that SA in the US havent even changed the wording on their side effects so it still says hair always grows back - there are loads of ladies in USA and Canada - its just not exceptable.
I will fight this to the day i die, its ruined my life even though i try not to let it.
I am six months post taxotere and still do not have a full head of hair. Bald patches at front. Lost hair last June. Started to grow back at end of FEC and then fell out again once started TAX. I had thick hair. I tried the cold cap and it fell out just before the 2nd dose of FEC. I have since heard that having hair cut short helps with penetration of cold cap. It seems to work for those with short thinner hair. But I was told it would definitely fall out on TAX but dont worry it will soon grow back! My eyebrows and eyelashes are thin. But the hairs on my legs have grown back. Just had them waxed! But I have a very nice wig. I have no more bad hair days and time spent on hair. So I Figure it is saving me loads of money. I have found the loss of a breast and no help there harder to bear especially now summer has arrived.
I am 7 months since I finished tax, although I have some hair on my head, legs and pubes, I have no eyelashes or eyebrows and haven’t needed to shave under my good arm since finishing.
So, I am wondering if I will ever get eyelashes and eyebrows again or is it still early days?
Good luck Pineapple with your campaign (and have a lovely holiday at the end of the month with the family).
Love P xx
Off on holiday tomorrow and when i get back have meeting with a legal team -this is seperate to whats going on here with the 'medical team’as i am still forging a head in my own right.
On my blog - out of 28 that have taken part in the poll, 20 do not have lashes and brows back! and 3 havent a hair on their head while 13 dont have a complete head of hair.
It will all be revealed in the UK probly in about 1 or 2 years as they are behind France.
There are breast cancer forums in France and there are loads of women on there complaing about hair not returning. But, anyway, its all in hand now - its just a shame that women in the UK are being lied to and will find out the hard way. Imagin being in your 20’s and 30’s and maybe not having a husband and then finding out this…
Hi Pineapple
I think 6.3% is highly significant. Hope you enjoy your holiday.
Best wishes Judy