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Old 03-31-2014, 08:38 PM   #1
WayTooYoung
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Join Date: Jan 2012
Location: Toronto
Posts: 64
Aromasin + Affinitor???

Hello Ladies...it's been a very long time since I have posted anything. It seems that every time I am back, I have bad news to report on. Well...it's back...but this time, they found a nodule on my lungs!!!

In October, I notice a recurrence in the same spot as always (chest wall). My Onc told said to monitor it as she did not want me to come off Femera as long as it was working. By the next month, I saw a new nodule forming just underneath the 1st nodule...still she said to monitor but in the mean time, I was booked for a CT and Bone Scan. Both scans returned clear.

In December, I had a followup with my Surgeon. She saw the nodules and wanted me to do a CT. I told her I recently did one, so to save me from having to endure another test, she asked for a copy of the CT/Bone scans and I obliged. After reviewing the CT, turns out it wasn't clear and that there was a .5mm nodule. Dr ordered another CT and confirmed its growth. When I learned the news, I was absolutely DEVASTATED...

So here I am...feeling let down by my healthcare team.

Fast forward to now...Dr wants me to take Aromasin and Affinitor. Has anyone had any experiences with these drugs? How are the side effects? Should I push for other options? Drugs? I am 32, and cannot afford to work. It's the only thing that helps me feel normal...I am afraid to take Affinitor as my Dr told me it was a chemo...

In the meantime, Dr. also made me a referral to go SunnyBrook Hospital to see if there are any clinical trials I can go on. So now it's the waiting game.
__________________
Feb/2010-Diagnosed with IDC ER+, PR+, Her2+++(age 28)
Mar 2010- 6 Rounds of FECT (made me sick as a dog)
Jun 2010- Finished chemo
Jul 2010- Mastectomy +12 lymphs (4+)
Oct 2010- Radiation/Begin Herceptin (Her2 was overlooked by my Onco!)
Sep 2011- End of Herceptin
Nov 2011- Recurrence-->Chest Wall, muscle, and possible lymph (ER+, PR-, Her2+++)...WTF!!!???!!!
Feb 2012-Randomized for Clinical Trial
Feb 2012- Begin blind study either TDM1 w/Pertuzumab or TDM1 w/Placebo Pertuzumab
Jan 2013-2nd Recurrence, off TDM1...what next?
Feb 2013-chest wall resection
Feb 2013-Begin Zoladex :(
Apr 2013-Begin Femara
Jul 2013-Oopherectomy + both tubes
Oct 2013-Chest wall recurrence same spot...Dr monitor
Nov 2013-New nodule on chest...restaging...bone/ct clear...continue to monitor
Mar 2014-Surgeon fr/dif hospital confirms lung metasis based on review of CT scan from Nov...Onc recommends Aromasin/Affinitor...
Apr 2014-Start Herceptin+Vinorelbine
Sep 2014-New pain in lower back, MRI confirms metastasis
Oct 2014-SBRT to lungs
Nov 2014-SBRT to lower back
Dec 2014-Restaging confirms two new nodules to lungs and lower spine :(
Jan 2015-Xeloda and Tykerb (good response)
Aug 2015-Xeloda/Tykerb not working...Dr wants to try Taxol/Herceptin combo...problem, Herceptin not covered by OHIP
Sep 2015-Begin Taxol continue Xgeva
Oct 2015-Add Herceptin
Nov 2015-CT stable but MRI shows new mets to spine :(
Jan/Feb 2016-Start Erubulin (Halavan)
May 2016-Progression...Stop Erubulin
June 2016-PMH to explore Clinical Trial options...consideration for Immunotherapy
July 2016-Screening for Trial...Still without treatment, experiencing low appetite, low energy, pain, and rapid wieght loss...cachexia???



You never know how STRONG you really are...until being strong is the only CHOICE you have...
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Old 04-03-2014, 09:28 AM   #2
Coux92
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Join Date: Jul 2013
Location: Katonah,New York
Posts: 228
Re: Aromasin + Affinitor???

I'm sorry I can not offer any advise but wanted to let you know you are in my thoughts. Im so sorry for this new diagnosis. Did you have any luck with information on the clinical trials? Please keep us posted and chin up! you can do this...again!
__________________
3/11/13- normal mammo and US
4/30/13 Found pea sized lump while showering
5/10/13 core bx
5/15/13 dx IDC 1CM,
5/20/13 BRAC 1&2 neg
5/28/13 lumpectomy and SNB, ER/PR/Her-2+, Nodes neg,positive margins
6/13/13 revision of margins . Now clear
6/26/13 first TCH
Chemo Ninja~kutaki Zika Zukuchiri
10/18/13-Bx of calcification-neg whew
11/7/13 Started Radiation.
01/2014- Started Tamoxifen
06/09/14-Steriotactic BX left breast calcification-Benign
06/18/2014-completed one year of Herceptin!
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Old 04-04-2014, 08:22 AM   #3
sarah
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Join Date: Sep 2005
Location: france
Posts: 1,648
Re: Aromasin + Affinitor???

Hello,
I noticed that the docs didn't mention going back on Herceptin or TDM1, any reason for that?
I take it that they've already irradiated that area so can't do radiation?
Take the Femara at night so that if you have hot flashes, it's not at work
health and happiness
sarah
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