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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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Old 07-06-2016, 09:01 AM   #2
Carol Ann
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Join Date: Dec 2013
Posts: 1,045
Re: Rapid Weight Loss

I am so sorry this is happening. I don't have any experience myself with it, but if you check out Ann Silberman's (Cool Breeze here on this forum) blog and Facebook page, Breast Cancer? But Doctor, I Hate Pink!, she has some posts and links about the Cachexia she herself is experiencing as a Stage 4 mets person.

Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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Old 07-06-2016, 10:14 AM   #3
donocco
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Join Date: Oct 2013
Posts: 474
Re: Rapid Weight Loss

Megace (Megestrol) a Progestin can stimulate your appetite. I think the strength is 40mg/ml and the dosage might be one teaspoonful 3 times a day. Talk with the Oncologist

Paul
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Old 07-08-2016, 12:55 PM   #4
tricia keegan
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Join Date: Nov 2005
Location: Ireland
Posts: 3,463
Re: Rapid Weight Loss

I'm sorry I don't have any advice for you but hope you get started on the trial soon and have a good response to it.
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 07-11-2016, 07:15 AM   #5
jra40
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Join Date: Mar 2011
Location: Pittsburgh, PA.
Posts: 260
Re: Rapid Weight Loss

I too have no advice but really praying hard for you! Hope you get some answers and treatment options fast.
__________________
11/17/10 - Diagnosed with 4.5cm tumor in right breast, IDC, Stage 2, Nuclear grade 2, ER+ PR+ HER2+
12/13/10 - Lymph node biopsy - negative
12/28/10 - Started neo-adjuvant treatment along with clinical trial with 4 rounds of AC chemo every 3 weeks
3/15/11 - Began weekly Taxol/Herceptin infusions along with 750mg of Tykerb taken by mouth daily
6/28/11 - Finished last cycle of Taxol
7/27/11 - Breast MRI shows tumor has dissolved, remarkable reaction to chemo
8/31/11 - Lumpectomy, Sentinel Node biopsy. Node negative, clear margins, 7mm of cancer left over from chemo.
10/05/11 - Started radiation, 5 days a week for 7 weeks.
11/8/11 - Finished radiation
3/21/12 - Last Herceptin!
3/26/12 - Port removed!
Tamoxifen for 5 years
8/4/15 - Hysterectomy & bilateral salpingo-oophorectomy. Due to large fibroids. No cancer!
8/8/15 - Started Arimidex
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Old 07-12-2016, 01:18 AM   #6
IrvineFriend
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Join Date: Jan 2013
Location: Irvine, CA (Southern CA)
Posts: 414
Re: Rapid Weight Loss

Hi WayTooYoung,

I recall your earlier posts and am sorry you are experiencing such a strenuous journey. It must be so overwhelming. I can only offer advise regarding appetite as I was on the thin side going into chemo and not very food oriented other than taste and maintaining my health. I'm going to go out on a limb vs. texting you personally because in my last stages of chemo I did use medical marijuana and it was an enormous help. So much so that I can't thank the state I live in enough. I know my response does not address your overall situation, but it did help me acquire an appetite. Best to you and your success with your treatments.

-Julie
__________________
Julie
Live in Orange County, CA

Diagnosed with DCIS Oct. 2012

Bilateral Dec. 19, 2012
IDC, ER/PR-, Her2+++, Grade 3
Stage IIIa
15.6 cm
4/14 nodes + macrometastases
First thing each morning, I try on my bathing suit. Then, nothing worse can happen the rest of the day.
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Old 07-13-2016, 05:48 AM   #7
WayTooYoung
Senior Member
 
Join Date: Jan 2012
Location: Toronto
Posts: 64
Re: Rapid Weight Loss

Hello everyone and thank you for all your great and wonderful feedback and prayers. Unfortunately, my restaging scans of the MRI of my spine show there is some disease in the cerbellum (brain stem). They told me I couldnt be a candidate at this time for their immunotherapy clinical trial. I was floored by their news as I was penciled in to begin treatment today. Drs also said I would have to do radiation to my spine/brain mets before I can begin other forms of systemic treatment which currently remains very limited for me as I have used up pretty much all that they offer. Right now, I am numb and being ushered through many appointments. I just had an MRI for my brain. Not sure what to expect next...I am only 34, is this really it for me??? I'm in need of support.
__________________
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...
WayTooYoung is offline   Reply With Quote
Old 07-13-2016, 07:50 AM   #8
jra40
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Join Date: Mar 2011
Location: Pittsburgh, PA.
Posts: 260
Re: Rapid Weight Loss

This is not it for you, you are a strong, tough woman! Is there any way to get a second opinion? I see you are in Canada, any possibility of finding a way to the US for options?

Praying for you - stay strong and positive! Jessica
__________________
11/17/10 - Diagnosed with 4.5cm tumor in right breast, IDC, Stage 2, Nuclear grade 2, ER+ PR+ HER2+
12/13/10 - Lymph node biopsy - negative
12/28/10 - Started neo-adjuvant treatment along with clinical trial with 4 rounds of AC chemo every 3 weeks
3/15/11 - Began weekly Taxol/Herceptin infusions along with 750mg of Tykerb taken by mouth daily
6/28/11 - Finished last cycle of Taxol
7/27/11 - Breast MRI shows tumor has dissolved, remarkable reaction to chemo
8/31/11 - Lumpectomy, Sentinel Node biopsy. Node negative, clear margins, 7mm of cancer left over from chemo.
10/05/11 - Started radiation, 5 days a week for 7 weeks.
11/8/11 - Finished radiation
3/21/12 - Last Herceptin!
3/26/12 - Port removed!
Tamoxifen for 5 years
8/4/15 - Hysterectomy & bilateral salpingo-oophorectomy. Due to large fibroids. No cancer!
8/8/15 - Started Arimidex
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Old 07-13-2016, 08:09 AM   #9
Crn
Senior Member
 
Join Date: Mar 2014
Posts: 46
Re: Rapid Weight Loss

WayTooYoung,
I am frustrated for you, that you cannot participate in the trial at this time. But you will get there. You can do this. You have faced so many challenges already and have pushed though them. Some very wise people in this group remind us to focus on the first step, then the next. I am thinking of you and praying for you.*
Cindy
__________________
Jan 2014 -mammogram, targeted mammogram, and ultrasound.
Feb 2014 -stereotactic biopsy (IDC, lobular growth pattern, grade 3, ER+ 30%, PR+ 1%, HER2+ 3+, ki67 10%), MRI - tumor up to 7cm, Lymph node biopsy - malignant.
Mar 2014 -port placement, chemo begins (TCHP)x6 every 3 weeks, Neulasta shots.
June 2014 complete chemo series, Herceptin only until Mar 15
Aug 2014 -Bilateral mastectomy with left axillary dissection (PCR in left breast, cancer cell found in lymph node).
Sept 2014 -radiation 28x
Oct 2014 complete radiation
Nov 2014 - begin Arimidex
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