Will I Lose my Hair?
This has to be the first question every woman asks when informed they will be having chemotherapy, right? Read on...
Updated blog 25/05 2021 (scroll to the bottom of the page for all updates)
What does this mean? We are every woman, we are your wife, your girlfriend, your mother, sister, and daughter. So, if you are a man this is important for you too and you can find out how it might affect your life towards the end of this page. I'll be adding to this blog as more news comes out so please check back from time to time.
Who Am I?
My name is Shirley, a regular sixty-three-year-old woman. I'm a wife, mother, and grandmother. I'm also the co-founder of a global support group. I write, enjoy gardening and I suffer from male pattern baldness. For a man, that's bad enough but for a woman...it's soul-destroying.
At the age of forty-five, I was diagnosed with breast cancer. Surgery, sentinel node biopsy, adjuvant chemotherapy, and radiotherapy. Because my breast cancer was hormone receptive I then had to have Tamoxifen for three years aromatase inhibitor for the next two years, which was Letrozole or Femara as it's called in France. I believe I'm correct is saying that if your cancer is triple-negative you are not usually prescribed hormone treatment. I know many women suffer terrible side-effects from their hormone treatment. Some even stop taking this tiny pill because of the severity of their symptoms. Luckily mine wasn't that bad but I do remember stiff painful ankles and other joints.
So, after chemotherapy finished I soon discovered that something was amiss.
My hair. It wasn't growing back so my oncologist phoned Sanofi Aventis (who produced a chemo product that was used on me), in Paris, and told them.
At this stage, I still believed it would return and I was just being a bit slow off the mark, plus I do like to be different! Anyway, he told me that after speaking with Sanofi, they said they were sorry it had happened to me but yes, it can happen, albeit very rarely. They also said it would NEVER grow back.
My mental health went into free fall and my 'rare' disfigurement became a full-time obsession. I also kept going over in my head that I had asked my oncologist if I could use a cold cap but she said it didn't work for Taxotere so it wasn't an option for me. Currently, it is the preferred treatment in France with many oncologists for anyone prescribed Taxotere/Docetaxel.
I soon found another lady in the USA, Pam, who was suffering from the same side-effect. We couldn't help but wonder that as we found each other so easily there must be more women out there waiting to be found. That's when we decided to look for them and form a support group. That was the birth of our safe place - we were the 'Taxotears'.
It quickly became a global support group that sadly increases, even to this day, by women who all believed they were the only ones. We were the freaks of chemo. We were part of a dirty little secret. Our 'raising awareness' needed to be suppressed and our claims would be discredited and silenced. We carried on regardless of all the brick walls we faced in our mission. We had each other and this gave us empowerment. Several independent studies showed this side-effect was occurring in up to 30% but still the drug maker, Sanofi, continued to manipulate the figures or just ignore it. They continually refused to abide by the classification table, you know that little paper that states all the possible side-effects in every packet of pills you buy? They are split into groups;
Common and frequent
3. Very rare
To be in the 'rare' category it would have to occur in less than 0.01%. Anything above that is 'common and frequent'. So, their continued claims of very rare are not only totally incorrect but they are a blatant disregard of the classification table which should be adhered to. I did challenge Sanofi many times about this. They would respond by saying they had not carried out a study and any figures available were from independent studies. For many years I demanded they carry out their own study (I would plead with the EMA and the MHRA to force Sanofi to carry out a study but it always fell on deaf ears) but obviously they knew the results would not be in their favour so they put it off for as long as possible or at least until their patent had expired. They refused to acknowledge this disfiguring abuse while raking in their millions of $. We also discovered that there was another equally if not more effective drug called Paclitaxel that didn't have the hair regrowth problem but it was not produced by Sanofi. Nobody is given the choice or this information.
My obsession reached a peak that I couldn't descend from, insomnia and paranoia took over my life. My doctor kept pleading with me to have anti-depressants but I refused them saying that I wasn't depressed and I didn't want to take something that would make me like my devil's haircut! I was scared that if I took medication, I'd think it was OK to go out in public 'uncovered', when the only thing I was interested in 'uncovering' was this hidden adverse side-effect! I became hooked on sleeping pills that stopped working after a few years, it was impossible to sleep with them and without them. Trying to function on a daily normal level was no longer possible. Often, it was difficult to string a sentence together. I remember making sure our home office window shutters, which overlooked the main road, were tightly closed at night in case someone would try to shoot me while I was sitting at the PC.
During this time I did some bizarre things including creating a YouTube Video where I read a little ditty to the drug Company involved and at the end dropped my trousers and mooned into the camera. At the time I thought it was just me being me but thinking back, I realise it wasn't! It's hard to believe I made that video! But it goes to prove how the mind can spin out of control when depressed, obsessed, and angry.
This downward spiral continued for seven years until one day, out of the blue, something happened which made me love myself. I had finally accepted it. Now, don't get me wrong, I wasn't blind. I would still look in the mirror and not like my reflection but I'd finally stopped fighting it. It was what it was.
The next thought was to write a memoir about my experience, hoping it would educate and help others in the same situation. So that's what I did. Ten months later 'Naked in the Wind - Chemo, Hair Loss and Deceit' was available on Amazon. It wasn't easy to write because I had to revisit the dark place I had just managed to leave but I wanted to get this story out.
My story needed to be told but always thinking that once the book was out, that would be the end of it. Life would move on.
I certainly wasn't expecting the response it brought!
The emails came in thick and fast from strangers who had bought it for
their wives or mothers suffering from the same side-effect. All of them saying they had been prescribed Taxotere and all of them thinking they were freaks.
Then the invitations started to arrive asking me to take part in podcast interviews, to write articles, national newspapers covered it and the list went on. I was once again, sucked into the world of the devil's haircut.
Meanwhile, back at the support group, new members carried on joining and of course, the inevitable heartbreak when we lost members and that included Pam the lovely lady I co-founded the group with.
We always had faith that one day Sanofi would have to answer for their actions.
One morning I woke knowing it was the right time for me to leave the support group. I loved these ladies and our solidarity had never wavered, we had all supported each other on what's been a long and painful journey. I had given my all and felt I couldn't do it anymore. That brings us to today.
Earlier this year I received a subpoena. Sanofi US had gone through the court of the Hague to force me to appear in the civil court of Toulouse to answer questions. To be interrogated for the day.
This video appeared on the Ring of Fire website and it was amazing! It soon vanished and I can only assume that Sanofi instructed them to remove it. But guess what, I have several copies, so not to worry!
Almost fourteen thousand women in the USA have now filed lawsuits for their life-changing disfigurement. It has been a long time coming and I wish those brave ladies all the very best. I can only imagine the courage needed to go through with this. They are your wives, mothers, sisters, and daughters of tomorrow. The women of tomorrow that won't be warned or told the truth about the very real possibility that this could happen to them and that there is another equally effective drug that doesn't have this problem! There is also a device called a cold cap or scalp cooling that if worn during your chemo sessions, can help minimise the risk of hair loss and I would love to see this used as standard practice -offered to all. Women should have the right to choose.
Sadly, because of the ongoing litigation in the US, the Support group is now not fit for purpose due to lawyers from both sides gaining access to the group. It's not fair that sufferers from this disfigurement have nowhere to go, they desperately need a safe place. So, I've been working on starting a new support group which will be available, any day now, for everyone except US citizens, due to the powers of the lawyers it's easy to gain access. As a normal procedure, there will be strict vetting. This will safeguard the members and give peace of mind to everyone.
Men Are Not Immune
Please don't think you are immune to this adverse side-effect because you are a man. Because men don't suffer from breast cancer as much as women, obviously the numbers are smaller, but still as painful to suffer from.
This could happen to your wife, mother, sister, and daughter. Don't you think they deserve the right to be informed? Imagine this happening to a female member of your family. Having to change your way of life, forever, because your wife is unable to be the spontaneous person she was before. How will you cope with the years of her being depressed, her hating to see her own reflection not to mention how it intrudes into the bedroom! It affects sports too as well as EVERY aspect of your normal life including the unexpected ring of the doorbell. Imagine the kids can't just walk in the house, from school, in case they have brought a friend home with them. To your wife, hearing the front door opening will send her into a blind panic.
If you would like to contribute to helping some of our European 'Taxotears' ladies attend one of the bellwether trials, in New Orleans, to fill the public gallery with wigless heads I have set up a Go Fund Me campaign, here is the link to the Go Fund Me campaign. Thank you.
To watch my 30 min live video click here
The trial due to begin in June is now postponed to start in August 2021
The next bellwether trials are;
2nd trial - May 24th - June 4th 2021
3rd trial - Aug 16th - Aug 27th 2021
4th trial - Oct 18th - Oct 29th 2021
No dates as yet for the 5th trial.
Yet again, US District Judge Jane Milazzo decided in Sanofi's favour. She declared that the Taxotere label update carried out in 2015 was adequate because it warned patients about the risk of permanent hair loss. This has resulted in 200 disfigured women having their lawsuits kicked out. Does this label update give the true percentage of this soul-destroying side-effect? Of course not. So the 'adequate' warning is rather an insult in my opinion.
The next bellwether trial due in Aug now seems to be in doubt. Sanofi is, yet again, using the statute of limitations for their reasoning. The lengths they will go to try to eliminate one claimant (14,000 in total) are extraordinary and despicable. Perhaps they are trying to intimidate these women into withdrawing their lawsuits? Who knows. But what I do know is that these women are angry and whatever dirty tricks Sanofi tries to come up with only adds fuel to their fires. These angry disfigured women are going nowhere!
The next bellwether trial scheduled for March 23rd has been canceled. The reason is the statute of limitations. This seems to be the 'card' that Sanofi is playing. When it suited them, they told me that is was always classed as 'ongoing' but when I pushed them they said 'it could be 7 years or more' (I recorded this meeting so I do have proof). That's so they could get away with fiddling the data/product info BUT now it suits them, in court, they say that this woman should have filed her case as she must have known it was permanent after 6 months.
#Taxotere #Docetaxel #Sanofi #Paclitaxel #Letrozole #mentalHealth #depression #litigation #disfiguration