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Old 12-26-2015, 09:39 AM   #1
Debbie L.
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Re: Bracing Myself For A Swift Kick Into Menopause

Europa, it's like almost everything else about cancer treatment -- each person reacts differently. For you, if you have side effects, it will be tricky to sort out which ones are are caused by the AI, because of the oopherectomy.

I hear you about wondering if there's enough benefit for ER low positive cancer. They know it's less benefit, but pinning down exactly how much less is harder. But in a way, it gives you more options. Why not try the AI and see how you do, knowing that if you do decide it's intolerable, it's probably less important to be on it than if the cancer was 100% ER+?

As for managing side effects, it seems the most common complaint (by far) is the achiness. For most it's more just stiffness/pain after rest, while for others it's a lot of pain all the time. Things that have helped with that include stretching exercise (like yoga), regular exercise in general, making sure Vitamin D levels are adequate, taking NSAIDs (Celebrex, ibuprofen), and perhaps accupuncture. The other side effects that worry you (hair loss, weight gain) are much less common. You'll also want a baseline bone density test, and ongoing monitoring for that.

Then there are the hot flashes, which for you will be a double whammy (ooph and AI). Meds that were initially developed for nerve pain and/or seizure control (like Lyrica/pregabalin) seem to help with those, although for some, there's an adjustment period where some sedation happens (most women report it decreases after a few weeks as their body adjusts).

Good luck with your decisions. A second opinion might also help you gather all the information you need to feel comfortable with what you choose.

Debbie Laxague


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Old 12-26-2015, 02:50 PM   #2
Becky
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Re: Bracing Myself For A Swift Kick Into Menopause

When I got my ooph to go on Armidex, my onc made me wait 3 weeks so my estrogen could come down before we took it all the way down with the AI. He said it would be easier on me and the wait time is nothing as there is still estrogen in your body from the ovaries anyway and an AI doesn't do anything about what's already there. It was supposed to make It all a little easier. Since I did it that way, I have no idea if it was but his recommendation seemed logical to me. It was a bit rough but I got thru it within 2 months. UTIs were my biggest devil in the first 6 months or so. Just post if you have difficulties. We are here for you.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"

Last edited by Becky; 12-26-2015 at 02:54 PM..
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Old 12-26-2015, 03:09 PM   #3
europa
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Re: Bracing Myself For A Swift Kick Into Menopause

Ladies, how much estrogen did your tumors have and how old were you when you went to an AI?
I have spent the better part of my day reading studies and trials and I keep seeing that trials dealing with hormone therapies say that the higher the ER levels the more beneficial the treatment will be. But one study stuck with me. It was a study showing the benefits of hormonal therapies in women of different ER %. They looked at women with ER at less than 1%, 1-9% and over 10%. Turns out women under 9% saw little to no benefit because the chemistry of their tumor was complete different of that of women with above 10%.
So I'm wondering what the benefit of hormone therapy or removing my ovaries will be since I am at 1% more of the group that saw no benefit. And I did 3.5 yrs of tamoxifen which has caused Hell. I'm struggling with this because my experience with Zoladex was horrific and if that's any indication of what my life will be without my ovaries, I rather take my chances without anything.
Also, at 41 I feel like I have ways to go before my body starts fluctuating hormonally as I enter menopause. And I know that that fluctuation can be a culprit in developing highly ER+ breast cancer. So couldn't I wait until I'm 46, closer to a natural age of menopause to take my ovaries out? Wouldn't that help my body naturally raise my FHA levels and reduce my estrogen swirling in my body?
__________________
DX 10/2011
PET Scan + MRI 10/2011
Lumpectomy 11/11/11
Stage 2B +++ ER+(10%), PR+(5%), HER2+++(1 positive node, 1 micromets to second node)
AC started 12/2011 ended 1/2012
Taxol + Herceptin weekly for 12 weeks ended 4/2012
30 zaps of radiation done 6/2012
Tamoxifen 6/2012
every 3 weeks of Herceptin for another year.
Metformin Trial 8/12
10/12 MRI- CLEAR
01/13 BRAIN MRI- CLEAR!
01/13 Neck MRI- CLEAR!
FINISHED HERCEPTIN 1/9/2013...Woot Woot
Starting Walter Reed Vaccine Trial 2/13
CT Scans + ultrasound of abdomen CLEAR-5/13
02/2015 through 11/2015 emergency D&Cs for Tamoxifen induced uterine polyps which caused uncontrollable hemorrhaging
12/2015 blood clot to left leg caused by Tamoxifen. No longer taking it. On Xarelto, a blood thinner
12/2015 Ablation to prevent hemorrhaging from potential issues with Tamoxifen residue in my system
1/2016 continuing journey without hormonal therapy. Reevaluating the option of a hysterectomy and oopherectomy.
4/1/2018 2mm stroke. Yes, stroke! No cause ever found but they believe it was a migraine that went bonkers and created a tiny clot. No deficits. I was back to normal with 24hrs. Now on baby aspirin for life.
7/27/2018 hysterectomy and oopherectomy
01/07/2019 Mastectomy and expanders put in
3/22/2019 Vtach, almost died. Cause unknown.
7/22/2019 New perky boobs put in
7/21/2020 Off of all drugs but a baby aspirin because of the stroke in 2018.


www.mychemobag.org
www.facebook.com/mychemobag

8 YEARS NED
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Old 12-26-2015, 07:29 PM   #4
Becky
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Location: Stockton, NJ
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Re: Bracing Myself For A Swift Kick Into Menopause

I was 46 when I got my ovaries removed. My tumor was 50 % ER but PR negative.
__________________
Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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