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Old 07-06-2016, 05:52 AM   #1
WayTooYoung
Senior Member
 
Join Date: Jan 2012
Location: Toronto
Posts: 64
Rapid Weight Loss

Hello Ladies,

I am hoping someone can chime in with some advice or experience to share. Last May, I was told that Erubulin was no longer working for me and they took me off the treatment. The Drs said that I have pretty much "blown through every good treatment option available that targets Her2 and conventional treatment" and that I am running out of options. They ended up referring me to Princess Margarett Hospital to see if there were any clinical trials available to me. Currently, I am trying to get on their Phase 1b Trastazumab + Dervalumab immunotherapy trial. I did all my screening and scans yesterday and am awaiting a call from them. Although I am hopeful to get on some systemic treatment, I have also been off treatments for 2 whole months. Drs were unsure whether to give me any treatment in the interim or not because the trial requires a one-month wash out period to qualify (so they saw it as pointless). Since I have been off treatments, I noticed my weight has been rapidly declining, I also had a large pleural effusion in my lung which resulted in a nearly collapsed lung. I ended up getting a pleural catheter put in, and since then, I have been so depressed and miserable. My weight continues to drop rapidly despite me eating regularly, I have little energy, and I no longer feel I am able to do what I use to be able to do. I feel worried and scared, but worse, I have little appetite when I do eat. When I look online, it appears I may have Cachexia. Has anyone experienced this? How can this be reversed? My clothes are falling off my body and I look sickly, it really depresses me. Any words of wisdom or advice will be appreciated!
__________________
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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