DES Lawsuit Won Today!!!
The 53 DES Daughters have won a landmark case against about 40 drugmakers of diethylstilbestrol (DES) prescribed in the 1930's to the 1970's. Millions of women and men have been affected by this drug and now it is affecting the third generation!
Aaron Levine and Associates in Washington, DC was the attorney representing 53 DES Daughters (I am one of them).
Of importance to note is the fact that DES women should not take any form of HRT. They should also be vigilant doing yearly Paps (even if you've had a hysterectomy). These Paps differ from regular Paps - they involve colposcopy and iodine staining to detect lesions. The risk of vaginal cancers is an issue with women of ALL ages.
The risk of breast cancer doubles at age 50 and triples at age 60 if you are DES exposed in utero. DES was a synthetic estrogen, which is why it's so important to avoid any form of HRT. You should see a physician skilled with DES. They can also determine if you have been DES exposed.
This will be in the news tomorrow it's a huge victory for the DES community!\
tuckertwo
Comments
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I too have also just learned of DES within the last few weeks, and i have been readin up on some information. How would I find a doctor specializing in DES. I believe I am a DES daughter. but seeing how my parents passed away when I was young and my mother never questioned anything the doctor gave her all I have to go on is my older siblings stating my mother took something after she was hospitalized as almost miscarring me. She was 41 when I was born which back in 1969 was a high risk, then with the bleeding. I got diagnosed with IDC May 17 2010 stage 3b,4/23 nodes as far as everything else all i know is hormone receptor positive. This would all make sense as I have no other family members who have been diagnosed with breast cancer
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You can contact: http://www.desaction.org/ if you think you have been exposed to DES. They can give you a list of doctors who are knowledgeable about DES and performing exams for DES patients. There are some specific vaginal changes that are unique for DES Daughters; a doctor can confirm this. If in fact you discover you are a DES Daughter you may be eligible for compensation. Please see the above website for desaction for more information, and best of luck to you. I'm sorry you got bc. I had no other family members with it as well. Stay in touch.
tucketwo
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My SIL died from cervical cancer due to DES at age 18. My mother-in-law sufferered guilt/nightmares her whole life.
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carcharm,
I am so sorry to hear that. It's a tragedy for everyone connected with the drug. Thank you for sharing this.
tuckertwo
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I have wondered for many years,since I heard about the problem associated with being given DES to try to stop miscarriage, if I wasn't given it in 1958. I was about three months in my first pregnancy when I started bleeding. We lived on the Millington Naval Base in Tn. We lived on the hospital compound there and my husband took me there where a doctor gave me a bottle of pills to take to see if it would stop the bleeding, I took them religiously but didn't see the doctor again because we were transferred to the Camp LeJeune. I carried my baby successfully and gave birth to a baby boy. Years later when read about the problems of DES I worried my son might have problems. But for some reasons I never told him that he might have been exposed before birth. I'm sure I would have told him as he had gotten married and might have been having kids. But that wasn"t to be;six weeks after he married he was killed in a motorcycle accident. And now have breast cancer which may or may not be caused by a drug I may or may not have taken. At least don't have to worry about my dear son or his children having effects from it! It wouldn't change things but I'd still like to know. Hugs and love to you all
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miricurt,
What a tragic story - my heart goes out to you. It isn't too late to contact Aaron Levine & Assoc. the attorney involved in the DES litigation. Here is their toll free number: 1-888-868-5380 They can suggest a physician skilled in DES to determine if you were exposed to it. As well, they may help you to remember the pill you took that you think may have been DES. Best of luck, and stay in touch!
tuckertwo
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tuckertwo - do you know if there are any class actions in Australia or New Zealand regarding this drug? I've just read up on this after seeing your post and have remembered by mother was bleeding while pregnant with me in 1952 - I do know she was given something, but not sure what it was. I'll be calling her tomorrow to find out. Nice to find out this late (after 2 lots of bc) that if I was exposed in the womb that I should never have taken HRT (the pill should be included in that warning too).
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susie,
There is a huge amount of info in Australia and NZ about DES since the hearing was successful in Boston, MA. Yes, it was used there, and in the UK as well. My attorney, Aaron Levine in Washington DC, is in the UK now in an attempt to gather info about DES use there. I am not sure if there are 'class actions' per se in Aussie and NZ, but you can call Aaron's office at 1-888-868-5380 or email the office (which would be less $$ for you) http://www.aaronlevinelaw.com and get an update. Also check out DES Action; they are a great resource Just google DES Action; I know they had articles from Aussie and NZ recently on their site.
I know, the damn DES should have come with warnings. That's what the lawsuit is about. It's a defective drug, it caused bc and it could all have been avoided.
Let me know what you find out, ok?
tuckertwo
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To contact DES Action:
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I contacted Aaron & Levin three weeks ago. Spoke to a woman there, she asked numerous questions, then said she would be sending me paperwork in the mail. Never received it. Maybe they are overwhelmed since the ruling.
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Thankyou for your replies - I will be speaking to my mother today - I vaguely remember her mentioning something years ago - maybe when the effects of the drug was first published.
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Hi suebak,
Yes, they might be a tad overwhelmed - maybe you could try emailing - website address above a few posts up, or keep calling until you get what you need. They are the premier law firm concerning defective drugs and definitely know their stuff! Let me know how things go...
tuckertwo
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I was given DES to prevent miscarriage so my daughter is exposed. I have tried to get her to have regular thermography and mammograms but she hasn't up until now. I am going to make sure she knows about this. Fortunately she is not on any HRT.
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kaara,
So sorry to hear your daughter was exposed! Hopefully she'll be ok. I didn't know about avoiding HRT in ANY form until last year. I had been taking different herbs to combat menopause; some of them or most of them have estrogen. My daughter was exposed thru me so she is third generation. I can't get her interested in doing mammos or therm. I do think thermography is better for detecting lumps and there's no radiation. How are you doing?
tuckertwo
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Just spoke to my mother - she was given something in NZ - doesn't know what it was and can't remember if it was an injection or tablets - she's going to think on it - she is 83 so I can't expect her to remember everything. We had talked about it before but not in the context of bc and she can't remember why we talked about it and my chemo brain doesn't remember everything.
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I wonder if it was the only drug used at that time ie 1952
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I managed to find out the drug was called stilboestrol in Australia and NZ - I'll see if my mother remembers that name. Also found out that in the early 1950's it was probably given as an injection.
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susie,
DES went by many names, depending on the manufacturer. It might be that finding the main manufacturer at that time would be helpful? Does your mom recall the color of the pill, or a symbol on it, anything like that? I know that's reaching back many years, but sometimes older folks can remember 50 years ago better than what they had for lunch today
I urge you to contact DES Action -website above in a post - and see if they can help. They don't charge. I'm not an expert in this area, just a DES Daughter. Also, you should get checked by a Gyn for DES exposure signs. If your mom took DES while preg with you, you will likely have a particular pattern on vaginal tissue that is unique to DES. DES Action can tell you more about this.
Another thought, susie, would the pharmacy still be around that might have written the Rx?
tucker
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tucker: I'm doing fine...had surgery in December, no chemo or rads, but probably some hormone therapy for five years. Following a strict diet and supplementation program as well. Will alternate between thermography and mammo frequently to keep on top of things. Hope you are doing well also. I am going to have DD tell her gyn that she was exposed to DES so they can check her.
Unfortunately, she was also exposed to radiation as a baby because she had a birthmark on the back of her head and the pediatrician thought it might grow so they radiated it to make it disappear...yikes!! I didn't have the sense then to know it could be harmful later on. I've told her all this but she just makes a joke of it, saying I had her brain nuked and that's why she acts stupid sometimes:)
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I spoke to Aaron Levine when i was first diagnosed. My mother took DES when pregnant with me and we believe there are hospital records to prove it as she worked at the hospital at the time. I have had cervical cancer as well and to treat it had a full hysterectomy. Of course that led to ERT/HRT for 3 years. I then got breast cancer. Mr. Levine said he would take my case IF.............I lived in any other state but Michigan. In Michigan (the ONLY state with this law) our legislature passed a law that we cannot sue drug manufacturers. The law office took lots of info. from me and said I could contact them if I ever moved out of state. Incredible!!
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Tucker - I think she may have had an injection. She was treated by a local gp in a small town. Seeing it was 59 years ago, I doubt there would be any records. The good thing was finding out the name used in NZ at that time and the usual method of delivery - found it on a NZ website. It does seem familiar to me too, maybe from our previous conversation about it.
I'm definitely going to discuss all of this with my oncologist when I see him next month. I may then get a referral to a Gyn and investigate further.
Thankyou for your help
Sue
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Kaara,
Glad you are doing well! Sounds like you're on the right track! I guess we've all had radiation exposure in one way or another. The body is amazing with its capacity to heal eh? Your daughter may very well want to talk with Aaron Levine's office regarding litigation.
mybee, you've been thru a lot! That is the most ridiculous law I've ever heard of! It seems illegal. Hey, I'd be seriously thinking about moving to a neighboring state in order to get litigaion going. This is no small thing!.
susie, you're very welcome. Happy I could be of help! Let me know if you need more info. I will try to post updates on this thread but a better site is DES Action or Aaron Levine's website (see above prior posts)
Blessings,
tuckertwo
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kaara,
I am wondering about your taking HRT. I know DES Daughters are supposed to avoid it completely, not sure about the Moms. DES was synthetic estrogen.
tuckertwo
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I'm not taking it anymore...I stopped when I was dx back in October. I hate the hot flashes but I would hate having a bc recurrence more! I was on synthetic estrogen (premarin) for 20 years and had just shifted to BHRT when I was dx. The hormone therapy I was referring to in my post above is tamoxifen...ugh!
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Ok - here's the story - my mother remembers they were tablets and they made her sick, so she didn't take them all. She can't remember the name though. I really don't think that memory is reliable because of her age. I'll let it go for now, but will ask my onc about it next time I see him.
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Dear Tuckertwo:
I am now part of the DES Bellwether Trial about to take place in Boston later this week. Will you be there? I plan on attending the opening statements which will either begin this Friday, or Monday. I will be coming from Maine but would love to meet the other DES daughters.
My attorney, Julie Oliver-Zhang said they need as much support during the opening statements as they can get. This is like David and Goliath. A good friend of mine who is a pharmaceutical attorney said the drug companies are in bed with the FDA and often hire employees away from FDA because they know how to get the new drugs through the system. He also said, even if we won the case and were awarded a judgement it would be a drop in the bucket for these drug companies. He said they really don't care about you and me and the drug risk outcomes; they are so powerful and so wealthy.
I have had cervical cancer, breast cancer, precancerous growths in my colon, uterine fibroids, a miscarriage, premature birth, endometriosis, and now Grave's Disease. I also have a "hooded cervix", a tilted uterus and an incompetent cervix which caused the miscarriage and premature birth.
You can reach me via my regular email: rose12853@yahoo.com.
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tuckertwo - Wow - this is indeed a landmark victory!!! The only sad part is that it took so long to reach it.
I learned about DES many years ago. I remember asking my mom, who was very unclear about the medications she took while pregnant. In 1950, the Doctor was God, and you didn't question him. We never did get a satisfactory answer.
I had early cervical cancer in situ at the age of 22. I went on to have numerous cervical issues, horrific fibroids, and eventually a complete hysterectomy. Fertility was never an issue, as I never had kids.
I did, however, take ten years of Hormone Replacement Therapy after my hysterectomy. Did I know it could be dangerous? Yes, but my quality of life depended on it.
I am so sorry you were part of the generation of DES daughters, but I am happy for the legal victory, and validation, if nothing else.
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I too am a DES daughter. Where do you go from there? 100 percent estrogen positive breast cancer. Stage 4 after 10 years still 100 percent estrogen pos.
Glad I am alive but the side effects are hard -
I believe my Mom took DES when she was pregnant with me too. She had some bleeding and the doctor gave her some "pills" and she took them. I was born in 1955. At the age of 24, I had cervical carcinoma in-situ. I also had two miscarriages. Now I have BC and I am >95%ER positive and >60% PR positive.
I am thinking that DES has something to do with this! Now I am worried about my kids too as I saw there may be a link in grandchildren too. Ugh...freeking Big Pharma! I am glad to hear they lost the suit.
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I am a DES daughter. Had an incompetent cervix and delivered two pre-term babies (both are now in their 20's!) Developed breast cancer at 50. One sister had breast cancer and the other ovarian. We probably wouldn't be here today if it wasn't for DES but I am glad they lost!
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