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Old 01-11-2010, 10:00 AM   #1
Gabrielle
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Second Decade - Still NED - Gabrielle

Friends,

Starting 11th year. Still NED. Best wishes to all as we travel on this journey.

-Gabrielle
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Old 01-11-2010, 02:04 PM   #2
vlcarr
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Re: Second Decade - Still NED - Gabrielle

Wow, thank you for sharing that. I'm always so happy when I read news like this on the board.

Wishing you many more years of NED!!!
__________________
Vicky
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
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Old 01-11-2010, 02:08 PM   #3
schoolteacher
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Re: Second Decade - Still NED - Gabrielle

Gabrielle,

Thank you for sharing such encouraging information. I needed to hear this today.

Amelia
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Old 01-11-2010, 04:10 PM   #4
ElaineM
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Wink Re: Second Decade - Still NED - Gabrielle

Congratulations !! You are a good role model for everyone. We can all learn something valueable from you.
Are you following a special diet? Exercise? What has kept you NED for so long?
Whatever it is keep up the good work.
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Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
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Old 01-11-2010, 04:57 PM   #5
karen z
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Re: Second Decade - Still NED - Gabrielle

Gabrielle,
Thank you for the good news!
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Old 01-13-2010, 08:02 PM   #6
Gabrielle
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Re: Second Decade - Still NED - Gabrielle

Hi Friends,

Thank you for the messages. As a reminder, I was diagnosed Dec 1999, Stage III, infiltrating ductal, 9 positive nodes out of 21, Her2Nue, estrogen negative, 5.2 cm tumor. I was 44 years old. My maternal grandmother died of bc but I tested negative for BRCA 1 & 2 (which I got for my kids).

I had a mastectomy on the cancerous breast, 4 rounds of adriamycin/cytoxin, 4 rounds of taxotere, 25 hits of radiation, 52 weekly herceptins. I was an aggressive “SOB” in guiding my own treatment but not out of any intelligent design; just a primal need to survive for my young kids.

9 months later, I opted for a prophylactic mastectomy on the other breast and a year later, a prophylactic hysterectomy.

I do nothing special. I eat anything I want; I haven't cut out anything. I generally follow a good diet that I think of as a modified Atkins; lots of meat and vegetables, but also, a lot of fruit. I drink coffee and alcohol; I eat chocolate and other sweets. I have a desk job; I only walk for exercise. I stay ferociously busy - 4 courses away from completing my doctorate which I started 2 years ago.

I don’t think I have anything to “teach” anyone; I think it’s all a crap shoot. I have no idea why I survived and other worthy women did not. In my opinion, the ones who have passed are the real warriors. Somehow, I scraped through.

I remember the terror and despair. Block it out, minimize it, compartmentalize it…whatever. It’s all in God’s hands.

Pulling and praying for all of you.

-Gabrielle
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Old 01-21-2010, 02:45 AM   #7
chrislmelb
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Re: Second Decade - Still NED - Gabrielle

Great to read your report once a year. Keep it up.
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DX Sept 03 age 40 Stage 2B Grade 3 mastectomy (after 2 prior breast conserving surgeries)
"at least" 2.3 cm 3/12 nodes ER+/PR+ Her2+++
8 FEC. Tamoxifen then Arimidex. Ovaries out.
"late" Herceptin for 2 years (18months after chemo) on HERA trial. finished Herceptin Nov 2007.
Multiple bone mets May 2012 and now liver August 2012.
Abraxne, Herceptin and Zometa.
June 2013 Tykerb, Xeloda and Xgeva
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Old 02-28-2010, 04:38 PM   #8
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Re: Second Decade - Still NED - Gabrielle

Gabrielle
You are true inspiration and thank you very much for sharing your story. My stats seem similar to you and I am hoping for a positive outcome like you have achieved. Reading your success story is very helpful.

Congrats to You and many more great years.

Kris....
__________________
06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found


Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
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Old 02-28-2010, 04:51 PM   #9
Jackie07
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Re: Second Decade - Still NED - Gabrielle

Gabrielle,

Thanks for taking time to write your 'testimony' - a very honest 'I have no idea why I survived...' story.

And writing in the midst of your busy schedule persuing your doctorate...

Thanks. Drop by anytime when you need a break. We love to hear from you.
__________________
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016

"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe

Last edited by Jackie07; 04-04-2010 at 04:24 PM..
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Old 02-28-2010, 05:23 PM   #10
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Re: Second Decade - Still NED - Gabrielle

Thank you so much for sharing your story!!! And congratulations on your 11th year and counting!!!!

Btw, since you're ER-/PR-, I think making it to 11 years is a huge accomplishment - you can pretty much consider yourself cured! I had read somewhere that ER-/PR- have the highest risk early on, and you'll clearly over the hill for that.

Thanks for giving me hope!!!

Marcia
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ER+ (30%)/PR-/HER-2+, stage 3

Diagnosed on 02/18/09 at 38 with a huge 12x10 cm tumor, after a 6 month delay. Told I was too young and had no risk factors. Found swollen node during breastfeeding.
March-August 09: neo-adjuvant chemo, part of a trial at Stanford (4 DD A/C, 4 Taxotere with daily Tykerb), loading dose of Herceptin
08/12/09 - bye bye boobies (bilateral mastectomy)
08/24/09 - path report shows 100 % success in breast tissue (no cancer there, yay!), 98 % success in lymphatic invasion, and even though 11/13 nodes were still positive, > 95 % of the tumor in them was killed. Hoping for the best!
September-October 09: rads with daily Xeloda
02/25/10 - Cholecystectomy
05/27/10 - Bone scan clear
06/14/10 - CT scan clear, ovarian cyst found
07/27/10 - Done with Herceptin!
02/15/11 - MVA-BN HER-2 vaccine trial
03/15/11 - First CA 15-3: 12.7 and normal, yay!
10/01/11 - Bone scan and CT scan clear, fatty liver found
now on Tamoxifen and Aspirin


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Old 02-28-2010, 05:27 PM   #11
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Wink Re: Second Decade - Still NED - Gabrielle

Congratulations !! Great news !! Keep up the great work.
__________________
Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
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Old 02-28-2010, 07:25 PM   #12
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Re: Second Decade - Still NED - Gabrielle

gabrielle - your posts are terrific. first, congratulations on the second decade NED. that's just wonderful. thanks for the background you gave too. and most of all, i am psyched to see that you didn't give up anything - my head SWIMS when i read all the DON'T's all over the place. i mean god, life is supposed to be enjoyed. so seeing your history is quite encouraging because that's how i want to live too. thank you for sharing your success and your great attitude. valerie
__________________
8/09 - IDC 1.8 cm triple positive, lumpectomy left breast
10/09 began chemo (taxotere & carboplatin) and weekly herceptin.
1/21/10 finished chemo, continued on herceptin every 3 weeks until 10/2010.
2/10 began 7 wks of radiation
6/10 mom dies of primary peritoneal ovarian cancer
8/10 got my last remaining ovary out
10/10 mammogram all clear
3/11 MRI shows 5 'spots' in right breast, largest 1 cm unidentifiable on US
needle biopsy proved the largest to be old inflamed cyst -phew!
7/10 switched to Arimidex
8/9 switched to Femara - allergic to arimidex
Femara made me lose hair quickly so switched to Aromasin
Aromasin made my hair fall out too and the bone pain was too much.
back on Tamoxifen 1/2013.
blood clot from trains and planes 5/2014 so on coumadin per onco for as long as i am on tamoxifen
tamoxifen was supposed to be up with my 5 yrs in may but my boyfriend was diagnosed with stage 4 colon cancer so i am staying on tamoxifen indefinitely because i want some ammo against BC, given the stress. lost my husband in only 10 wks in 2007 to stage 4 esophageal cancer.
cancer's screwing with another man i love
2/2016 - 6yrs in remission, off tamoxifen and off coumadin - yay!
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Old 02-28-2010, 08:30 PM   #13
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Re: Second Decade - Still NED - Gabrielle

Now I'm really inspired as you were hormone negative too. Like Valerie, my head swims reading all the information about what you should/should not do. I've questioned everything I've ever done in my life that could have caused this bc-none in my family and no other types of cancer either.

But, when I realized I know people who have lived worse lifestyles than mine and never had cancer, I quit the blame game.

I want to do all I can to avoid a recurrence, but I just don't want it to rule my life and stress about everything I eat or don't eat. I am trying to eat healthier......

Thank you so much for your post.
__________________
Vicky
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
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Old 04-04-2010, 01:18 PM   #14
Gabrielle
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Re: Second Decade - Still NED - Gabrielle

Hi Friends,

Just checking in to say Happy Easter!

Stuffing my face with Easter egg cake and champagne. So much to be grateful for!

Take care,
Gabrielle
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Old 12-26-2010, 04:35 PM   #15
Gabrielle
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Re: Second Decade - Still NED - Gabrielle

Ending 11th year, hello 12th year! NED.

Wishing all of you a blessed and peaceful Christmas season.

Gabrielle
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Old 12-26-2010, 08:07 PM   #16
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Re: Second Decade - Still NED - Gabrielle

Der Gabrielle -
Thanks for logging on and letting us know that all is still going very well for you.

I have also begun my 11th year in the cancer game, and since you are just a little ahead of me I have something to work toward - catch up with Gabrielle!

Have a wonderful year ahead filled with many blessings.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and half of 2017. Boring ...
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Old 12-27-2010, 08:04 AM   #17
Mary L
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Red face Re: Second Decade - Still NED - Gabrielle

Wow!!! Great job. I am so happy for you. Congratulations. Mary l
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Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.
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Old 12-27-2010, 01:18 PM   #18
candlegranny
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Re: Second Decade - Still NED - Gabrielle

Gabrielle, thank you for the post. I am scared and folks like you give me so much hope. I had quite a bit of node involvement. You had herceptin back then? was that in a clinical trial? just wondering. I was trying to monitor what i eat but that is hard to do and hard not to do. thanks for your positive post. God surely has a plan for you!!!
__________________
Mammogram Sep 21, 2009 everything good and clear
DX jan 19,2010 Invasive Ductal Carcinoma, Grade 2 Age 56
modified radical masectomy on LEFT side 29 Jan 2010
2.7 cm 18/31 nodes
mets to just above collar bone ( 2 nodes showed in PET)
ER- PR - / Her2 +++ (IHC) Stage 111 C
ki-67 60% nottingham score 7
A/C chemo mar 22,2010 DD
herceptin & taxotere DD june 1,2010
finished taxotere july 12, 2010
finished herceptin 16 May 2011
PET Scan 9 Aug 10, cancer in neck is gone! NED
33 Rads completed 1 Oct 2010
PET/CT Scan 6 Jan 2011 NED
PET/CT Scan 3 Aug 2011
MUGA 59% 3/22/10 -63% 9/23/10 - 51% 1/4/11 - 55% 2/17/11 - 50% 8/3/11
26 Aug 2011 NED
20 Feb 2012 NED
5 Mar 2012 PORT OUT
12 July 2012 DIEP breast reconstruction
23 Aug 2012 NED
15 Nov 2012 new breast tweeked and natural breast uplifted and implant added
17 Feb 2013 NED
27 mar 2013 lipo suction to add fat cells to new breast in hopes for needed adjustment.


"Don't spend your time worrying about when or how you are going to die, spend your time figuring out how you are going to live today". ~Elizabeth Edwards.
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Old 12-28-2010, 10:20 AM   #19
Gabrielle
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Re: Second Decade - Still NED - Gabrielle

Steph,

You've been through so much! My heart goes out to you and I'm very impressed with your put-one-foot-in-front-of-the-other attitude. I wish you many more successful years of battling this disease.

-Gabrielle
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Old 01-03-2011, 01:29 AM   #20
Jackie07
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Re: Second Decade - Still NED - Gabrielle

Gabrielle,

Happy New Year! Love your picture!
__________________
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016

"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe
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