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Old 01-15-2013, 11:33 AM   #1
IrvineFriend
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Did you lose or gain weight while on chemo?

I'll be starting my chemo (TCH) as soon as my last drain is out and healed. I've gained a lot of weight since my diagnosis and surgery as I was an avid jogger/runner/hiker beforehand. When I found out I was going to have the bilateral, and wouldn't be able to run my 1/2 marathon I was training for in February, I just gave up and didn't give a rip about much (depression, too much wine after work, etc). I can't even fit into my clothes anymore and I'm wearing yoga pants to work now!

I've really been cutting back and watching my intake since Paula's email (thank you for that great reminder and every new post keeps it going) and wondering what your experience was in terms of weight loss or gain during chemo. Maybe I shouldn't be trying to lose so much weight right now if I'm going to lose some anyway?

I've never been a big eater and lean towards healthy anyway, and when I don't feel good, I generally lose my appetite big time. But I don't want to use chemo as a time to starve myself either.
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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 01-15-2013, 01:06 PM   #2
LeahM
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Re: Did you lose or gain weight while on chemo?

I was told that while on chemo I would gain weight due to the steroids. Didn't happen. I lost weight. I lost about 10 pounds between diagnosis and the start of chemo (too sad to eat) and another 5 to 7 pounds during TCH. I tried to eat healthier during chemo but truly I just ate what I could tolerate. Everyones experience is diffferent tho. I wish you the best.

Leah
__________________
39 year old wife, mother of one and nurse.
April 20, 2012: Dx Invasive Ductal Carcinoma
April 25, 2012: ER+(5%), PR-, HER2+++
May 10, 2012: BRCA 1,2 Negative
May 23, 2012: MUGA Scan EF 70%
May 31, 2012: B/L Mastectomy. 2/2 nodes removed and CLEAR!! Power Port placed. 2 Drains. 2 Expanders placed
June 5, 2012: Drains OUT! Ahhhh..
June 12, 2012: Final Pathology Report, .8x.3cm tumor. Micromets to 1 node .35mm under cytokeratin staining. Stage 2A. Onc says "you are lucky to have found this early"
July 10, 2012: Started 6 rounds of TCH with weekly H
Sept 5, 2012: MUGA 65%
Sept 20, 2012: CAT scan of brain clear!
Oct 23, 2012: LAST TC! AMEN! Continue Herceptin every three weeks until July 2013.
Nov 19, 2012: Port out!
Dec 5, 2012: Started radiation
Dec. 10, 2012: MUGA 65%
Dec. 13, 2012: Turned 40. BEST BIRTHDAY EVER!
Jan 23, 2013: Last radiation. Told I am NED. Continue Herceptin every three weeks till July 2013.
Jan 29, 2013: Begin 5 years of Tamoxifen.
Feb 28, 2013: CT Scan with Contrast of lungs. 5mm and 4mm nodules of unknown origin. Rescan in 3 months.
Mar 6, 2013: EF 60%
May 8, 2013: Exanders out, implants implanted...abd. lipo and fat moved up. Girls are looking good!
June 3, 2013: CT Scan with Contrast of lungs. Previous nodules gone. New nodules (2mm and 3mm) found. Rescan in 3 months. So sorry I opened this can of worms...
June 11, 2013: EF 60%
June 25, 2013: Last Herceptin. wow...
Aug 20, 2013: Tumor markers within normal limits. Xray to sore left ribs shows no disease or fractures.
Sept 9, 2013: CT of lungs shows no disease. Closing this can of worms and moving on.
Nov 20, 2013: Tumor markers within normal limits. Severe Vit D deficiency, started on prescription Vit. D. Blaming chemo for this.
Feb 2014: Tumor markers within normal limits.
May 2014: Tumor markers within normal limits. Graduated to twice yearly onc appts.
Oct 2014: Tumor markers within normal limits.
May 2015: Tumor markers WNL. Bone density scan fine. Bone scan and xray of ribs shows "something" 4th right rib. Could be healed fracture but if it is healed why does it hurt?
Nov 2015: Tumor markers WNL. Follow up bone scan clear.
Feb 2016: Syncope! WTF? Dizzy too. Brain scan clear, ECHO EF 60%, Halter Monitor shows heart is fine. Viral? I will never know.
June 2016: Tumor markers WNL.
Oct 2016: Stabbing pain right eye. Long story short, trigeminal neuralgia.
Nov 2016 Brain MRI clear.
Jan 2017: Tumor markers WNL, still getting weird pain right rib area, and sometimes right upper chest. Xray x2, Bone Scan, Breast MRI all clear. Scar tissue? Rads. I may never know.
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Old 01-15-2013, 01:19 PM   #3
roz123
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Re: Did you lose or gain weight while on chemo?

I was about 123 lbs to start and lost 12lbs during chemo, I was extremely sick to my stomach, plus the stress of diagnosis was a factor aswell
I have since gained it all back
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diagnosed aug/11
right breast IDC 2.2 cm LVI
neoadjuvant fecx3, tax and her x3
surgery -pCR 0/2 nodes
25 rads
herceptin x18
tamox
prophy bi-msx with TE's oct 15/12
LD flap reconstruction (PM me if you want the details)
zoladex shots monthly until SOFT studies come out
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Old 01-15-2013, 01:21 PM   #4
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Re: Did you lose or gain weight while on chemo?

forgot to add...you have a lifetime of healthy eating ahead of you. Don't worry about the few months in chemo. I was always a healthy eater but during chemo I ate whatever I could stomach, especially since I was losing quite a bit of weight. Some days that was just a big 'ol bowl of ice cream
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diagnosed aug/11
right breast IDC 2.2 cm LVI
neoadjuvant fecx3, tax and her x3
surgery -pCR 0/2 nodes
25 rads
herceptin x18
tamox
prophy bi-msx with TE's oct 15/12
LD flap reconstruction (PM me if you want the details)
zoladex shots monthly until SOFT studies come out
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Old 01-15-2013, 01:46 PM   #5
IrvineFriend
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Re: Did you lose or gain weight while on chemo?

Thanks for the info. BTW, your pic on your blog is adorable! You're probably one of the few people who can wear short hair really well. Thanks!
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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 01-15-2013, 05:58 PM   #6
BonnieR
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Re: Did you lose or gain weight while on chemo?

I lost my appetite during chemo Not nauseous just not hungry Lost weight and my onc cautioned me it could affect my chemo schedule if I keep losing. I was encouraged to eat whatever I wanted including burgers and shakes ( you don't often hear that from doctors!)
I kept a lot of easy to snack foods around. Cheese and crackers, yogurt, ice cream, Ensure drinks. Like Roz says, this is not the time to go on a health food diet but of course be as mindful as you can But your body is going to tell you
Keep the faith
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Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 01-15-2013, 06:18 PM   #7
Paty
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Re: Did you lose or gain weight while on chemo?

I lost about 20 pounds during my treatment as I was not eating same amounts of food as before diagnosis.
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Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
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Old 01-15-2013, 06:51 PM   #8
europa
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Re: Did you lose or gain weight while on chemo?

I lost 28 pounds with chemo. Now on Tamoxifen it's a bit tougher. I was very overweight going into chemo. I have about 15 more pounds to lose.
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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.


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8 YEARS NED
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Old 01-15-2013, 07:28 PM   #9
Becky
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Re: Did you lose or gain weight while on chemo?

I lost almost 40 lbs but gained back 20 over the last few years. I was very nauseous and could hardly eat. I had (at that time) an 8th grader and a 10th grader at home so I would eat with them but I could hardly eat a yogurt or an oatmeal pack for breakfast. I wouldn't have eaten at all if I didn't have the kids around but not eating would have scared them so much more than they already were.
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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!

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Old 01-15-2013, 07:29 PM   #10
chicagoetc
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Re: Did you lose or gain weight while on chemo?

Me too. Lost weight. Nothing tasted right. And I started to pay attention to fat intake. Then again I needed to lose some. Still...
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Diagnosed: 7/13/07 (or 7/7/07)
Surgery: 8/15/07 Modified Radical One Side with Lymph Node Dissection
Pathology Report: ER/PR-, HER2+ with FISH at 8.4 copies, Grade 3, Stage IIIa, 3.2 cm tumor plus 4/19 positive lymph nodes
Portacath: 9/7/07
Chemo: 9/14/07 with AC (every three weeks) for four rounds
Physical Therapy for ROM Loss / "Cording" (but not Lymphodema)
Taxol + Herceptin weekly (started 12/2007 with 8 of 12 Taxol)
Radiation: (28 rads from 3/07 to 4/07)
Reconstruction (silicone implant)
Herceptin done (10/08)
Cognitive Remediation (11/08 - 12/08)
Lymphedema Diagnosed 5/10/10 (almost 3 years post cancer diagnosis)
Lymphedema Rehab 9/10/10 - 11/10/10
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Old 01-15-2013, 10:12 PM   #11
Gerri
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Re: Did you lose or gain weight while on chemo?

After I was dx'd I assumed the one perk undergoing chemo would be weight loss...not so much. My onc told me that most patients gain, not lose weight while on chemo. Of course, I couldn't prove her wrong, so over the course of the next year and a half I packed 30 lbs on my already pudgy body. Fortunately, after I finished with treatment I joined Weight Watchers and took off the 30 I gained plus 35 that I needed to lose before all this began.

I agree with the others. Eat what sounds good but make it as healthy as possible. If you gain weight you can worry about it after treatment is over and you are in recovery mode.

Take care,
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Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
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Old 01-16-2013, 12:37 PM   #12
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Re: Did you lose or gain weight while on chemo?

I gained about 30 pounds. I was always hungry.
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Old 01-16-2013, 01:52 PM   #13
hestko76
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Re: Did you lose or gain weight while on chemo?

I was among the weight gainers during chemo and herceptin. I gained 12 pounds. Since August I have been watching my calories and increasing exercise, and I've lost 20 pounds. Pamper yourself during chemo, and eat what tastes good.
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dx 10-31-11
Stage 1 Grade 3 (7mm tumor)
Lumpectomy 11-18-11
Er- Pr- Her2+++
0/5 nodes - no positive lymph nodes
Port installed 1-6-12
6 Rounds TCH
Rad. 33 tx
Last herceptin 12-10-12
Port removed 1-3-13
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Old 01-16-2013, 02:10 PM   #14
jaykay
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Re: Did you lose or gain weight while on chemo?

I just finished my 3 TCH (out of 6) and I lose 4 or 5 lbs the first week, then gain it back when I start feeling like myself again.

Very little tastes good to me except chocolate (yea!) so I do indulge myself but try to eat healthy.

Janis
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March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 01-16-2013, 02:46 PM   #15
caya
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Re: Did you lose or gain weight while on chemo?

I gained about 10 - 15 pounds on chemo/Herceptin, probably because it seemed all I could tolerate was carbs - bread, pasta, rice, potatoes etc.. Gained another 30 while on Femara - not easy to lose.
Studies came out recently verifying that chemo basically knocks out our metabolism... and mine wasn't great to begin with.

all the best
caya
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ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
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Old 01-16-2013, 02:54 PM   #16
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Re: Did you lose or gain weight while on chemo?

I was always underweight whenever cancer was diagnosed. During chemo I would gain about 13-15 lbs which I attributed to eating well and resting/exercising more.

My weight has been very steady since my teenage days. (I've always been sick, so always underweight!
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Old 01-16-2013, 03:04 PM   #17
tricia keegan
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Re: Did you lose or gain weight while on chemo?

I too was under weight but still lost another stone despite the Onc saying I'd pile on weight and not lose it, I found it hard to eat and had to force myself to eat little and often, just snacks I could tolerate rather than meals. Good luck!
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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 01-16-2013, 03:11 PM   #18
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Re: Did you lose or gain weight while on chemo?

I am one who gained about 20 lbs. I still haven't gotten it off I would lose in between chemos a little, but then when treatment was all done (chemo), that's when I started gaining. Weird.
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Sandra from WI
Stage 1, Tumor 1.4 cm, Grade 3, ER-/PR-/HER2+++
Poorly Differentiated IDC with comedo type necrosis with DCIS/ALH :(
Mammogram: 11/12/09
Call Back Mammo: 11/17/09
Biopsy: 11/25/09
Diagnosis Call: 12/2/09
Partial MX: 12/16/09. 3 LN clean.
6 Cycles Chemo (TCH) Jan-April/10; Herceptin all of 2010; 33 Rads complete 7/10. Herceptin done 12/10.
FOLLOW UPS:
Bil mammo, and Breast MRI 12/10 - CLEAN! (after a second lump was biopsied and BENIGN - showed giant cell reaction?).
Bil mammo 6/11 - CLEAN!
Left mammo 12/11 - CLEAN!
PET/CT scan 4/6/12 - CLEAN!
Bil mammo 8/12 - CLEAN!
November 2012 - Gallbladder Removed.
Bil MRI 2/13 - CLEAN!

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Old 01-16-2013, 09:44 PM   #19
NEDenise
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Re: Did you lose or gain weight while on chemo?

I gained 45 pounds...and am still hanging onto 35 of them for dear life. They seem to like me very much, and just don't want to leave me!
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1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
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Old 01-16-2013, 10:23 PM   #20
conomyself
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Re: Did you lose or gain weight while on chemo?

I lost some after diagnosis, maybe 7 pounds, then another 7 or so during the first two weeks of TCH, then things settled down for me, stress-wise, and I started eating again and put the 7 back on and then another 8 or so, which started after the fourth round. This seemed to be all fluid retention.

I've lost maybe 4 since my peak. I still have some fluid retention but it seems to be slowly coming off. I still need to lose about 30, as I was quite overweight to start with.
__________________
7/30/2012 Diagnosed with metastatic breast cancer
8/3/2012 CT scan mets to liver (major!!), lungs, spine, and skin
8/8/2012 Biopsy results: invasive ductal carcinoma
ER+/PR+/HER2+ amplification 4.8 (whatever that means)
8/13/2012 Brain MRI (clear); bone scan verified CT scan
8/14/12 started Taxotere/Carboplatin/Herceptin, 2 rounds (added Neulasta after 9/4 treatment)
9/4/12 CA 15-3: >3000
9/15/12 CA 15-3: 840
9/15/12 started Taxotere/Perjeta/Herceptin, 4 rounds (no Neulasta)
10/29/12 CT scan showed dramatic improvement in all areas - largest liver met 2.5 cm, largest lung met 10 cm
12/17/12 Started Perjeta/Herceptin, 2 rounds
12/17/12 CA 15-3: 17 Yay!!!
1/21/13 CT scan showed improvement - largest liver met 1.9 cm, largest lung met 2 mm
1/29/13 CA 15-3: 12 Started Herceptin only
3/12/13 CA 15-3: still 12 yay!! Back to Perjeta/Herceptin
3/29/13 CT scan more improvement - largest liver met 1.2 cm, some lung mets disappeared!
3/7/14 started Tamoxifen
6/27/13 - 1/2015 CT scan stable
Began a diet of only single ingredient foods and went nearly NED excepts for some tiny lung spots - ask me if you want to know more...
1/2015 - 1/2017 CT scan stable
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