Taxotears Turns Ten

Later this year will be a bittersweet celebration for myself and many ladies from around the world. Bitter because it marks the anniversary of the birth of a highly successful support group that I have been involved with from the first day.

Ten years ago I found myself in a situation that not only shook me to my core, but also left me with the need to track down others that had been disfigured like myself. What was this disfiguration? The year before I had been given a chemotherapy drug, Taxotere, as part of my treatment for breast cancer. Instead of my hair growing back, as I was told it would, I remained looking like an orangutan—an ugly freak. My doctor told me that the drug company, Sanofi-Aventis, had informed him I was only the third or fourth person in the world that this has happened to! So there must be two or three others out there somewhere, and I vowed to track them down. I hadn’t banked on it being so easy.

The first lady I found was Pam, from Oklahoma, and we decided to find others and create a support group. Cynthia then joined us and she created a website for our group of monk look-a-likes. Little did we know in those early days, how successful the group would become in finding so many ladies. We are now a large, thriving global group, with a constant stream of new members. It’s a group none of use wanted to join and it comes with a lifetime membership.

Now on to the sweet bit.

This group is a safe place for all members, there’s nobody to judge us and accuse us of not being grateful for being alive, which happens to us constantly. These people hear us but do NOT listen to us. They don’t want to understand our message. So we know that when we lend a shoulder to cry on, sometimes just listen, tell our stories and share tips that nobody ‘gets it’ more than we do. What would we have done without this support group? I have no idea, but I do know it’s been an incredible help to us all. We might not be happy to be in this situation but we are sure as hell happy to have each other.

This week I was invited to be interviewed for a radio podcast show for “inspirational authors’ so I asked our members what the group meant to them. I would like to share some of their comments with you.

“This group has given me strength and courage.” — Pam

“This group means I’m not alone.” — Chrissy

“Ladies understand how I feel when no one else does.” — Susan

“I’m not a freak.” — Erica

“This group has taken me from a place of isolation and despair to a place of understanding, validation and most of all hope.” — Suzanne

These are just a few of the comments I received.

I will end this blog on that sweet note, not only sweet because of how we feel about our support group but because it’s a good excuse to have another slice of cake!
Happy birthday to the amazing ‘Taxotears’ group!

12 thoughts on “Taxotears Turns Ten

  1. Although I just joined last week, I have been a missing support group member for 17 years. So glad to have found you! Happy Birthday to my new found friends!

  2. I love this group and it means the world to me to know that I’m not alone. It’s like breast cancer, once you have it you become part of a sisterhood that you didn’t ask for but find yourself in. This group is the same, we didn’t ask for a life time of disfigurement but we got it and together we are learning to make the best of it.

  3. This is a wonderful group, and even though I’m a relatively new member too, I find that just knowing that there are others out there who truly understand what it means to have this horrible, permanent side effect makes the burden just a little easier to carry. Happy Birthday to the group!

  4. Thank goodness I found this site. I knew something was wrong and my oncologist was no help. It has been great to be able to discuss our problems as “outsiders” do not truly understand what we are going through. It becomes so consuming mentally.

  5. Besides the support we give each other, I believe we’re going to make a difference for future breast cancer patients. The right to informed consent is long overdue. Never underestimate the power of pissed-off women!

  6. I never realized how important having hair was to me until mine was literally stolen from me forever and I was left looking like a freak – forever. I have not had a full head of hair for 5 1/2 years and I am so grateful to have found this group. In addition to my onologist initially saying “it could not be from the chemo” (she now warns her patients) I had to educate the dermatologist I saw, directing her to published case studies. I actually had several dermatologists looking at my bald head on that fateful day that confirmed via scalp biopsy that my alopecia is the result of Taxotere. This is a REAL side effect and one I probably would not have followed up on if it had not been for this group. I probably would have thought I was the only one. . . Thank you, Aheadofourtime, Taxotears, and social media for bringing us together. Thank you Shirley, and Cynthia and of course, Pam, for finding each other and confirming that we are NOT single isolated cases! From the bottom of my heart. Happy birthday!

  7. While I am not an insider to this group, I have been facing the “what is my definition of quality of life” question since my oncologist recommended Taxotere/Cytoxan last week. I had resolved myself to the side of effects of Arimidex… Joint/muscle pain (that I already have), weight gain and fatigue. The thought of adding permanent hair loss, neuropathy (also already have), leg swelling, mouth sores, more fatigue, etc. When I mentioned hair loss as a concern to my onc he said “at least your hair will grow back…unlike mine”.
    Just wanted you to know that, even though I am not a part of this beautiful group, I appreciate your feelings of betrayal and loss. Thank you for being real.

  8. Hello, I’m due to start my treatment next week. I will be having FEC-T which includes Docetaxel. I’m concerned about the permanent impact but the alternative, cold cap means that the treatment won’t reach every area. I don’t know what to do as I need to let the hospital know if I want to use the cold cap. Did anyone else have to make this decision? Thank you for any advice xx

  9. Hello Emily – I had Docetaxel as part of my regime. My Oncologist told me my hair would grown back. I was not told about the possibility of permanent hair loss. The literature I was given did not quote any % risk or state this as a risk. I also used the cold cap. I lost the majority of my hair within weeks and was eventually totally bald. I finished chemo years ago and I have lost 75% of the number of hairs, and the hairs that did grow back are finer. My scalp clearly shows and the humiliation is unbearable. I know that if I’d been told there was a 3% chance of this (which the drug companies knew at the time) or even a 0.1% chance, I would NOT have taken Docexatel/Taxotere. It has permanently altered my life in a negative way. For me life is not about longevity it is about quality. My femininity has been stolen. If you are mid treatment I would ask your Oncologist to explore Taxol as even if it is off protocol insurance companies will often allow the switch. I am not an expert on Taxol so ask your Oncologist and write to the drug company requesting % risks. In summary Docetaxel/Taxotere is THE biggest regret I have in life (and I have had a varied and colourful life). Ask questions of your medical team. Ask them again and again. Ask for proof (not just their experience. Ask them when they last read the risks of specific drugs, what the % are etc). Read the papers on this web site as much higher % are quoted. You have to live in your body they don’t. To Shirley, Pam and Cynthia thank you for your passion in educating people of the risks. I wish I had found you prior to my treatment as so many of the specialist support services are unaware of the risks of this drug and I am now sending them to this web site and the articles you quote. I am grateful for the honesty and openness of others sharing their vulnerability of this cruel disfigurement. None of us should have to say “I am grateful to be alive”. There should be no justification. The price of permanent hair loss is not acceptable and we should not have to apologise to society for the anger many of us feel. I wish all of you well.

  10. There is a HUGE problem though. I am in with the Taxotere lawsuits. The drug manufacturers are using any social network groups that you have been in, along with ANY other form of communication, you have ever spoken about, or written about, as a way to disqualify you from having a case! If I had known about, and joined, this support group, or even commented on the forum, when I first had my chemo back in 2011, the manufacturers would have used it against me and claimed that I was outside of the statute of limitations, therefore, no compensation!
    You have to search in every way you can to find where you have ever even written about having permanent hair loss, every time you have mentioned it in any conversation, and even with your doctor!
    They even are requiring that you list every hair product, where and when you bought it, AND produce the receipts, that you have used … for three years before, and three years after, you used said drug! Thank God we have all of our tax returns in boxes in the attic, and we didn’t have time to purge them of all of the receipts that I had kept from when I used my credit card! I was able to produce a good many of them going back to 2008. (And yes, I had tried every hair growth product known to man! I even tried Nu-Hair, a dietary supplement, for a couple of weeks until I had routine blood work done by my onc, and found out it was doing serious damage to my liver!)
    Anyway, the questions you are required to answer, from the drug mfg. defense attys. are invasive to say the least. Age, and date, I began menses … really? Can someone please tell me what that has to do with hair loss after having chemo?
    It is a whole lot to go through, and I am also sick of reading where participants in this suit are being criticized because “why would you sue someone who saved your life?”
    Heck, I figured if I can just get enough to be able to be able to afford to get some eyebrows microbladed on, and some permanent eyeliner done, just that would go a long way to making me feel like I don’t look as much like Gollum from Lord of the Rings! Since having used their drug (choose words wisely) my eyes are also dry all night, then water profusely after I wake up, so, eyeliner always washes off within minutes, even the supposed waterproof types do! The other issue with being hairless is that I am sick of going past a mirror and looking up to see I have only half an eyebrow on one side, because I accidently touched or rubbed around an eye! (Did y’all know that for $55. and more you can even get eyebrow wigs to stick on? I think they are made with mouse hair or something!!!) Speaking of wigs, I live in the DEEP South. So far wearing a wig has NOT been an option! They ITCH and break my scalp out in rashes, are intolerably hot, tickle your face to insanity, and to me, I look like I’m in costume! Although, I have to admit, I wonder if one of those $2000. and up wigs feel any different than the Paula Young $60. clearance wigs. I will never know unless I am able to be compensated for the misery and emotional damage (not to mention the loss of attraction and physical affection from my most loved & best friend, but just clueless, husband that looking like something from a Hobbit movie has brought into my life. Nonetheless, I will never let Satan steal my JOY, my Spirit, or my sense of humor, throughout all of this!
    Just a cautionary statement for anyone contemplating, or beginning to take on Big Pharma.

  11. My goodness… it’s been 17 years since I was given that drug along with several others. I also was told my hair would come back. It did…thin fuzzy angel hair. It had been so thick, shiny, long and gorgeous. My hair stylist who I had for years used to call my hair Farrah…She choked up one day when a year post chemo I sat there looking freakish and fuzzy. Wispy and drab… With hope in my voice saying it may take a little more time to grow back. She had been the one to shave it off when it started to fall out. They said that would be less traumatic. I never got any body hair back. But I did get eyebrows…go figure. I’m 60 now and tell myself well you’re a gran now and older so looking good isn’t that big a deal but sometimes I cry for my hair. Not as much as I used to but I miss my husband running his hands in my hair…sounds silly I know. He pats me on the head quite a bit instead. I am not involved in the lawsuit as my treatment was too early. 2001…and I am glad to be alive but that stuff did so much damage to my body, I am skeptical that is what saved my life. I believe my naturopath did that in spite of these horrid treatments.. Also I will say that if I had known there was a 1/2% chance my hair wouldn’t come back I never would have taken that drug…just sayin’ I’m so glad to be validated as I griped for years to anyone who would listen that those drugs killed my hair. Guess I just miss myself. I know you guys know what I mean.

  12. I am sitting in tears as I read what so many lovely ladies have written…my story is the same..only I am old!!! 69 when diagnosed….so we aren’t supposed to care about hair!!! I had shiny hair with natural curl, so I could wear it many ways…..right now I have frizzy, thin, dull hair with baldness on the crown and on the front and sides…..I am thanking The Dear Lord for my health; but find it so hard to look in the mirror and see medicine’s side affects!! My eye lashes have grown in…but my eye brows haven’t!! So crazy!! May each one of you precious women know how special you are even though you may not look the same….your friends and family love that you are still part of their lives!!!!

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