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Old 11-17-2010, 04:01 AM   #1
Jud
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Question Mirena IUD Vs. Breast Cancer Relationship

Last year around September 2009 I had my mammograms and also, around the same time I was inserted Mirena IUD (plastic w/ Levonorgestrel) from that day I noticed changes in my body, loss hair, sleep patterns, mood changes, headaches, etc. hormonal inbalances. On sep this year when I was diagnosed with Breast cancer I keep thinking on how those changes in my body started . This is so much coincidence and of course Icannot proof that the hormone in the IUD has something to do with it. I know Drs sd that the amount of hormones are minimum but if you read the list of risk of adverse reaction published by the same company you wonder how such "small " amount of progesterona can produce: nausea, nervousness, vulvovaginitis, dysmenorrhea, back pain, weight increase, decreased libido, cervicitis/Papanicolaou smear normal/class II, hypertension, dyspareunia, anemia, alopecia, skin disorders including eczema, pruritus, rash and urticaria, abdominal distention, hirsutism and edema. Also, I found out shocking that there were spontaneous reports of breast cancer during Mirena postmarketing !
simply Mirena point out : ". Because spontaneous reports are voluntary and from a population of uncertain size, it is not possible to use postmarketing data to reliably estimate the frequency or establish causal relationship to drug exposure". I wonder if people considered healthy from this group had the same experience, please let us know.
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Old 05-26-2012, 01:17 AM   #2
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Re: Mirena IUD Vs. Breast Cancer Relationship

I had the Mirena inserted in October 2011. I was just diagnosed with breast cancer this week (May 2012) I am also wondering if there is a correlation
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Old 05-26-2012, 05:05 AM   #3
sarah
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Re: Mirena IUD Vs. Breast Cancer Relationship

Hello,
october 2011 to now to have caused breast cancer seems far too quick and very doubtful.
You would have to check if trials have been given concerning this to find a correlation between the two but I would doubt it given that millions of women have used IUDs.
Jud it seems you've had some allergic or emotional reaction and that this is something you should discuss with your doctor and prehaps discontinue using.
I think too often we look to blame something we have done to be the cause of our cancer but guess what, it isn't, shit happens and so does cancer. It's not because of an IUD or an abortion or because we ate too much meat or dairy, it just happens. Don't blame yourself, it's not your fault. Vegetarians get cancer too.
be well
sarah
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Old 05-26-2012, 10:24 PM   #4
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Re: Mirena IUD Vs. Breast Cancer Relationship

"Last year around September 2009 I had my mammograms and also, around the same time I was inserted Mirena IUD (plastic w/ Levonorgestrel) from that day I noticed changes in my body, loss hair, sleep patterns, mood changes, headaches, etc. hormonal inbalances."
Don't know if there's a correlation, but in the future, if something makes you feel this crappy, I would recommend that you take it out.
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1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 05-29-2012, 07:01 AM   #5
Jud
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Re: Mirena IUD Vs. Breast Cancer Relationship

I am sorry about the bad news. Altough, we can't be positive about what really triggers this disease, it is important to hear those signals that our body sends when something is going on inside of us. If it is true that thousands of women use it and they haven't got it, we can not always override a possibility. Thinking in a possibility Willl help us? May be yes ,maybe not. I wouldnt be surprise at all if they found out years later. Like many medicines or products in the market that get pull off because of dangerous side effects
At least we voice our concerns and maybe we can get heard.
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Old 06-08-2012, 09:48 PM   #6
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Angry Re: Mirena IUD Vs. Breast Cancer Relationship

I am also looking into correlation between the Mirena and breast cancer. I had mine in for 3 years and am getting checked for breast cancer next week. It's been a year and I'm still not right. I'd love to prove and sue the company because my life has been hell ever since!!
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Old 06-08-2012, 09:54 PM   #7
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Thumbs down Re: Mirena IUD Vs. Breast Cancer Relationship

At Sarah- I had to go into the ER 3 different times because of the problems associated with the Mirena. My friend out of no where started having arythmia in her heart only 2 months after she got the Mirena and took it out and now she's fine. I also experienced the "mirena crash" and I collapsed in front of my parents. I also have cysts in my ovaries and now my right breast is discharging and swollen. It effects everybody differently but if you spend time reading blogs, and all the problems it's caused women across the board it's amazing they are still able to keep it on the market. I say you don't want babies? Don't have sex or use a condom. I will never use birth control again. I'd rather get my tubes tied or my uterus removed than put that devil in me again.
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Old 06-09-2012, 04:34 AM   #8
KristinSchwick
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Re: Mirena IUD Vs. Breast Cancer Relationship

I feel like Sarah is getting attacked in these posts- so I want to voice my support. I agree with Sarah- shit happens to perfectly healthy women without IUDs. IUDs are extremely popular in Asian populations- and their incidence of BC is reduced compared to ours.

Everyone's response to a foreign object in their body is different. And that depends on their immune system, the physician's technique inserting it and the environment of their uterus. Some people are more prone to inflammation and the hormone derivatives in the IUD. That is not a reason to deny millions of women access to a "potentially" wonderful form of birth control. Its just like chemo- some women breeze through tough treatments and others really suffer from significant side effects. Our bodies are all unique and respond differently.

For me personally, I was on oral birth control, then my IUD and I loved the IUD and had lots of complaints on the oral birth control. Neither of which I blame for my cancer.
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Aug 2010: diagnosed stage 3b, 4 mo. after birth of son. 29 yrs old and breastfeeding, ER/PR-, Her-2+ started Neoadjuvant therapy: 4x FEC, 10x abraxane & Herceptin
Feb 2011: L mx with recon. Path. showed only DCIS but 4/10+ nodes.
March 2011: 6 wks rads.
Mother passed, lower back pain.
Late May 2011: Bone mets but organs clear; Tykerb, Xeloda, Xgeva. Stopped Herceptin. Implant infected: removed implant.
October 2011: Bone progression; Gemzar and Carboplatin & restarted Herceptin.
Jan 2012: Progression, re-classified as ER+; Tykerb, Herceptin, Zoladex & Femara. Anti-E is working!
May 2012: ovaries out, markers stable but elevated. Cont. Herceptin, Tykerb, Xgeva & Femara.
Dec 2012: aromasin
Jan 2013: faslodex, herceptin, tykerb
Jun: Kadcyla
Aug: Rads to hip, then Perjeta, Herceptin & Taxotere
Nov 2013: Perjeta, Herceptin, Halaven
Early 2014: Affinitor, Aromasin, Perjeta, Herceptin.
June 2014: Estradiol, Perjeta, Herceptin
Aug 14: Tamoxofin, H & P
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