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Old 11-09-2010, 03:30 PM   #21
Cal-Gal
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Location: Los Angeles, CA
Posts: 309
Re: Advice on work situation

Hi Ginny-

I had a lot of nasty things done to me during the time I was harrased for having cancer-I was in the middle of chemo--and it was just awful--I had to be strong and document everything--
in the end though I had to 'let it all go' and concentrate on getting myself better--and learning to be happy that the 'negative' people were out of my life--

Hugs,
__________________
DX: 11/08 Age: 53
Surgery: 1/09
Bilat Mastectomy, no reconstruction
ILC-4 tumors-1.7 cm,1.5 cm (2).8 cm
DCIS-11 cm
All tumors Grade 3
All tumors ER-0%/PR-0%
All tumors HER2+
IHC-all tumors Overexpression/borderline
FISH 2 tumors Her2-Negative
FISH 2 tumors Her2+ Equivocal
Stage I, 0/1 nodes
LVI-Indeterminate(treated as positive)
SPR Score 8/9
Ki-67 20%
BRCA genetic test 1/2=negative
Chemo: 6 rounds TAC Feb-June 2009 w/Neulasta
Herceptin: 6/12/09-6/4/10 52weeks
HNPCC genetic test: negative
Port Placement-9/23/09 Port Removal 6/25/10
Echo's every 3 months-All normal
2/09 Staging PET/CT showed 0.2 micronodule upper R lobe-lung-Onc does not think this is mets--
6/5/09 AND 10/09 CT scan 0.2 micronodule unchanged
1/10-PET/CT-uptake in nasopharynx-
1/10-MRI All normal
6/10-Bone Scan-clear
12/10-PET/CT-All Clear-NED
12/11-PET-All Clear-NED

12/12-PET-All Clear-NED
12/13-CT w/contrast Head, Torso-All Clear
12/14-CT w/contrast Head-All Clear
2/15-Core needle biopsy-R scar line

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Old 11-09-2010, 03:45 PM   #22
KDR
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Location: New York, New York
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Re: Advice on work situation

Ask your boss to put all requests in writing from now on. She'll know what's up. I'll bet the attitude changes quickly...I guess I worked for lawyers too long...20 years. Good luck.
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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Old 11-20-2010, 06:34 PM   #23
Carol.hope
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Posts: 90
Re: Advice on work situation

Ginny,
Under ADA, employers with 15 or more employees must make reasonable accommodations. The Job Accommodation Network (JAN) is part of the federal Dept. of Labor. They have a set of fact sheets; and one for people with cognitive impairment, includes accommodations to need help the employee with concentration, maintaining stamina, etc. (and many others). You can call JAN at (800) 526-7234. They will work with you over the telephone. Or check www.dol.gov/odep/pubs/fact/jan.htm
I don't know if your employer can get out of legal action because you haven't been there a year, but I think JAN would know that, and also might negotiate a plan with your employer.
Good luck. - Carol
__________________
Carol
Lyons, CO

dx June '05 at age 55
Stage 1, 1.5cm
ER+++, PR--, HER2+++
Lumpectomy, A/C, T/H
Herceptin stopped due to low LVEF (35%)
2010: NED, but continuing major chemo brain injury
www.BeyondChemoBrain.com
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Old 11-21-2010, 12:24 AM   #24
SoCalGal
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Location: LA LA Land
Posts: 1,607
Re: Advice on work situation

Hi Ginny,
I live in So Cal, too. I will be happy to have a little face time with your boss. I'm in a very cranky mood and am truly sick of a**holes. Stay strong!
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 01-11-2011, 12:26 PM   #25
ginnyg898
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Join Date: Sep 2010
Location: Northern California
Posts: 64
Re: Advice on work situation

Hi All:

Wanted to give everyone who was so helpful in this situation an update.

Unfortunately, evil boss pretty much got her way and I am starting on disability on Monday. I am so stressed out and have lost so much weight that my Oncologist is concerned about my recovery from surgery next month. The head of the company said he would make sure my benefits are continued for 12 weeks, but at this point I dont beleive much of what anybody says. They have allowed evil boss to treat me in such a callous and insensitive manner that I no longer believe that there is good in 'everybody'. I have mixed emotions about staying home (crazy; I know ), but I am very happy that I will get to be home with my girls for a while.

I have a question to put out there. Has anyone changed insurance coverage mid-treatment? Did you have any issues with continuation of treatment? As I said, I wouldnt put anything past this woman and would not be surprised if she cancelled my policy before my chair is cold. Worst case I will have to go on my husband's policy. I would like to hear from those that have been thru this.

Thanks, Ginny
__________________
41 Years Old
Dx w/IDC in August '10
No family history
ER+/PR-/HER2+
2.2cm tumor/Stage 2A
No node involvement
Tested negative for BRCA 1/2
Participated in a UCLA clinical trial testing TCH and/or Lapatinib in stage 1/2/3 bc patients that can be removed by surgery.
Underwent neo-adjuvant therapy to shrink tumor prior to surgery.
1st Surgery date: 2/16/11
Pathology report indicated ADH/DCIS in margin.
2nd Surgery: 3/21/11
Clean margins!
Started radiation: 4/11/11
Completed radiation: 7/8/11
1st post-surgical mammogram: 8/16/11 - CLEAR!
6 Weeks of Tamoxifen - Failure to Respond
Started Lupron/Arimidex: 8/29/11
Herceptin until September '11

Recurrence - August 2018
Same profile - ER+/PR-/HER2+
Undergoing neo-adjuvant therapy prior to surgery;
Gemzar, Carboplatin, Herceptin & Perjeta
Chemo through the end of 2018...
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Old 01-11-2011, 12:28 PM   #26
ginnyg898
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Join Date: Sep 2010
Location: Northern California
Posts: 64
Re: Advice on work situation

BTW: Thank you SoCaGal...i am tempted to give you her number. LOL
__________________
41 Years Old
Dx w/IDC in August '10
No family history
ER+/PR-/HER2+
2.2cm tumor/Stage 2A
No node involvement
Tested negative for BRCA 1/2
Participated in a UCLA clinical trial testing TCH and/or Lapatinib in stage 1/2/3 bc patients that can be removed by surgery.
Underwent neo-adjuvant therapy to shrink tumor prior to surgery.
1st Surgery date: 2/16/11
Pathology report indicated ADH/DCIS in margin.
2nd Surgery: 3/21/11
Clean margins!
Started radiation: 4/11/11
Completed radiation: 7/8/11
1st post-surgical mammogram: 8/16/11 - CLEAR!
6 Weeks of Tamoxifen - Failure to Respond
Started Lupron/Arimidex: 8/29/11
Herceptin until September '11

Recurrence - August 2018
Same profile - ER+/PR-/HER2+
Undergoing neo-adjuvant therapy prior to surgery;
Gemzar, Carboplatin, Herceptin & Perjeta
Chemo through the end of 2018...
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Old 01-11-2011, 03:13 PM   #27
KDR
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Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
Re: Advice on work situation

You should have Cobra for 18 months.
I think there's a six-month waiting period to apply for Medicare and it takes a while to get that. Good thing your husband can pick you up.
What a cold and cruel way to deal with another human being. Hang tight, my sister, she has added a lot of debits to her own final review. How pathetic.
Still, there are many people out there who really get what life is about, so don't give up on all.
Let's hope you get up and out of this situation quickly, and go on to a more positive position in your worklife. Hugs.
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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Old 01-12-2011, 02:31 PM   #28
Carol.hope
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Join Date: Sep 2005
Posts: 90
Re: Advice on work situation

Hi Ginny.
I thought I sent you two messages yesterday, but my internet service was sporadic, and it looks like neither one showed up. Internet is back today, so here goes again.

First, it's not crazy to have mixed emotions about all the changes - it's normal! This is a challenging time, as well as a good time to move forward. You have losses, so grief. You have new opportunities, so optimism. Working around people you don't trust probably isn't good for your health. Here's to good health!

Second, it's good that you have your husband's insurance to move to. When your employer's insurance policy ends, they will send you a Letter of Creditable Coverage or Continuous Coverage, which shows that you've had insurance. With this, the new company cannot make you wait for coverage under their policy. As soon as you know your current insurance is ended, ask for that letter. This is federal law. I'm guessing that they said you get 12 more weeks because you're due that under federal law, too - the American Family and Medical Leave Act.

I have been through this, and imagine many of our HER2 sisters have, too. It may not be fun, but there will come a day when you will finally realize it was for the best. You get to make YOUR life, the way you want it.

You are not alone. We are with you. You will make it!

My best to you, Carol
__________________
Carol
Lyons, CO

dx June '05 at age 55
Stage 1, 1.5cm
ER+++, PR--, HER2+++
Lumpectomy, A/C, T/H
Herceptin stopped due to low LVEF (35%)
2010: NED, but continuing major chemo brain injury
www.BeyondChemoBrain.com
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Old 01-12-2011, 03:17 PM   #29
Becky
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Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
Re: Advice on work situation

Aww Ginny

It seems no one has a true heart. Many years ago (I think late 2000 and several years before I got cancer), I hired a new sales rep (about 39 or 40 yrs old). During turnover calls with the old rep (whose territory was getting split), the old rep calls and says he had to take the new guy to the ER - ended up he had a bad valve. He needed emergency surgery and was airlifted from Chicago to Cleveland Clinic (who had some new procedure). He had surgery but had a stroke the day after (minor but affected his recovery). My boss and I worked hard in order to continue to pay him because he was only an employee for 2 weeks before this happened but they paid him (as you don't get short term disability until you are on the job a year). We made it work. He and I don't work in the same division anymore but he still calls me on my birthday. We sometimes joke on "how the job is a killer". I cannot believe someone could be so cruel. I do know people who have to take vacation days for doctor appointments and then take a whole day that is coordinated with ob/gyn, then dentist and so on.

Put these animals out of your mind. Hopefully none of them become injured or ill.
__________________
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!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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