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Old 05-16-2012, 08:19 PM   #1
CoolBreeze
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Stopping Working

Many know that I have agonized over the decision to stop working. I've been dealing with cancer for 3 years - 1 year as a liver metster. Had a resection, ablation and been on chemo since the dx with only a short break.

I just can't get up anymore and go to work. I am a high school secretary. I've been pushing it but it's just too hard now and since I'll never be off chemo, it's time. I talked to my boss this week and told everybody today. I love my job though so I am sad.

My district has a great terminal illness benefit - they will pay me for a year - my entire salary. It's amazing.

But, I fear not getting up and going to work. When I don't, I sit in my PJs on the computer all day and am not productive. And, when sick people do that, i find they get sicker. I need something to do.

My school says I can volunteer and still do their webpages and that kind of thing. I also need to find other activities but am not a homebody and like to work, so what Ill do, I don't know. I'd like to find something where there are consequences if I don't show up, because I tend to be ADD and lazy in a non-working situation. Lots of people say "take a class" but I'm not really a school person, although of course, I will look into it.

Looking for other suggestions. Thanks!
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http://butdoctorihatepink.com

08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

Im beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now Im 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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Old 05-16-2012, 08:50 PM   #2
ElaineM
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Wink Re: Stopping Working

It is great that your school district will pay you for year. Who knows after one year you might have regained some energy and health and be ready to job hunt again.
In any case there is life after "retirement". I am living proof of that.
There are all kinds of volunteer work available.
Take time to figure out what you like to do. Maybe there is something you never had time for before.
As long as you can arrange your schedule around your personal and health needs I think it will work out.
You might even be able to set your own hours.
Some suggestions:
I like your school principals idea of helping with their website at home. You can stay involved and in touch with all the people you love at school.
The American Cancer Society always needs volunteers to help new patients or give them rides to appointments. Can you do that occassionally?
Take a class in something you always wanted to learn.
Adult education has a variety of classes for adults that are available at low or no cost. Community colleges are usually cheaper than most 4 year colleges and universities. Some colleges and university systems offer free classes to adults over certain ages.
If you are a member of a faith group I am sure that group can use you help too.
Another idea in education is part time tutoring. I bet there is one student out there who would appreciate your help once or twice a week.
Later on when you feel better you can look for a salaried part time job.
Good luck. Take good care of yourself.
Hang in there !!
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Peace,
ElaineM
12 years and counting
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Lucky 13 !! I hope so !!!!!!
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Old 05-16-2012, 09:03 PM   #3
Jackie07
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Re: Stopping Working

Ann,

Take a non-credit language class - Spanish if you haven't learned it. It will keep your brain intact... It will also give you opportunity to take time/mind off the 'cancer' circle...

Spend more time on your Facebook - it will give you the support you need during this 'down' time. Since FB is composed of your friends and family and you can delete/add any 'toxic'/rehabilitated person anytime, it will give you needed support without adding too much stress. When you feel like it, you can explore the pages of friends of your friends, check out their pictures (without having to friend anyone - unless the person has the most strict friend policy) and postings...

Explore the joy of cooking - you need to eat and eat well. So try cook something good for yourself and/or others. Invite others to come eat with you (have a pot-luck once a while) and/or eat out together. Ask others to exercise/walk together - check out your community group and join them.

Pay close attention to your 'social' activity - never isolate yourself...

It's really wonderful that you won't have to worry about lost wages for the coming year. (Perhaps you can also plan some sort of vacation...)

Happy vacation!
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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
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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
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
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Last edited by Jackie07; 05-16-2012 at 09:10 PM..
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Old 05-17-2012, 12:47 AM   #4
Blondie
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Re: Stopping Working

Hello Coolbreeze,

I have been following your journey for a while. You are an amazing, strong positive person! One could see from your chimes, that you really valued the worker role. Great that you will be getting full pay- we don't have anyhthing like that in NZ.

What are you interested in? What do you enjoy doing? What do you value and what is important for you? Maintaining motivation is important for mental and physical health. Meaningful activities are the key to maintaining motivation. What are your goals? It may be something small....Perhaps plan your week- balanced schedule and remain committed to sticking to it. Developing new routines, interests and goals will be important...

I wish you all the best!

Blondie
__________________
2000-Age 32yrs
First Primary Right side:
2cm tumor, Grade2, ER+/PR+
1/11 nodes +
Lumptectomy, radiotherapy
CMF chemo and 6 yrs Tamoxifen
Retesting in 2010 revealed tumor to be HER2+++

2009
Microcalifications on mammogram
12 biospies- all clear
MRI-all clear

July 2010
Elected mastectomy right side,
10cm IDCS
1cm Tumor, Grade 3
Triple positive

3 Taxotere, 3 FEC
1 yr Herceptin- finish in October 2011
Tamoxifen
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Old 05-17-2012, 07:14 AM   #5
snolan
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Re: Stopping Working

We had one mom going through cancer treatment, she was the crosswalk person for my daughter's grade school. Just have to be there in the morning and afternoon for 30 min and they pay her!
I am sure you will settle into something, hard to figure out when you have a lot of time and resources out there. Hope all goes well.
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dx: DCIS 6/8/10, HER 2+ 7/26/10; Stage I Age 41
Double mast w reconstruction
6 TCH w 1yr herceptin
Tamox.
25 radiation tx
Removal of expander on L due to infection. Tried to save it had 3 bouts of antibiotics and went to see plastic surgeon 2-3x wk to get drained. Saving it was my idea not his. But lost it anyway.
Reconstruction set for December 21st,2011
Finished chemo 12/2010
Finished Herceptin 8/26/11
Reconstruction 12/21/11
Expanders exchanged for silicon 3/19/12
Nipple reconstruction 5/18/12
Nipple tatooing- 7/9/12- All done yay!
11/22/12-Went back to get scar tissue stretched to even the outside of breast, didn't work due to it being radiated skin.
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Old 05-17-2012, 09:32 AM   #6
BonnieR
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Re: Stopping Working

The other shoe has dropped! I am glad you gave yourself the opportunity to try staying at work. I think you would have regretting not doing so.
So, now, what to do??? As the others have said, take some time to think about what really interests you. Or what would make you feel good. Maybe something as a volunteer related to the students who you love so much. But try finding a NEW thing, too. Just for you. Jackie's vacation idea sounds really good!
I know you'll figure it out. For now, put your feet up! And keep the faith.
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Bonnie

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 05-17-2012, 09:50 AM   #7
bevilj
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Re: Stopping Working

Sorry to read that you are not feeling well enough to continue working. And lucky you to have full pay for a year so that you don't have to worry about income.

I hear you loud and clear on losing motivation if you don't have something to do on a regular basis. As I type this, I am sitting on my couch, in my PJs, taking a break from my part-time job (which I do from home). I find when I have more unscheduled time, I am less productive than when I am overscheduled. Funny how that works.

Do you have friends close by that are also home during the day? If so, maybe you can get together a group for a daily walk, at a scheduled time (assuming you feel well enough to do this). I find that when I get out for a walk with friends I have more energy than when I sit home and just work or lay low. You could sign up for a fundraising walk to help give you the motivation to get out there also. There were some other great ideas suggested (web site, driving patients to treatment, etc.) but really I think it's up to you. Think about what makes you happy, projects you have been putting off for another day, or things you have always wanted to do and go for it!

All my best ~ Jen
__________________
6/09 - self exam - lump!
8/09 Dx - IDC, left breast. Suspicious mass,right breast (more testing required).
9/09 - Double mast/cholecystectomy /nodes removed. IDC confirmed, right breast. liver/bone mets. ER-/PR -/Her2 +. BRCA 1/2 -.
10/09 - Started Taxotere, Carboplatin, Herceptin, Zometa. Hospitalized with Tetany.
1/10 - Finished Taxotere, Carbo, continued Herceptin, Zometa. PET/CT - improvement.
2-3/10 - Rads (25 rounds).
8/10 inflammation vs. malignancy?
1/11 progression. started Xeloda.
9/11 progression. pancreatitis or tumor? Chest rash appeared.
10/11 confirmed pancreatitis. Halted Xeloda.
11/11 skin mets confirmed.
12/11 - started Tykerb, back on Xeloda.
1/12 cut Xeloda dose in . skin mets fading!
4/12 - no more Xeloda. skin mets resolved.
8/12 - brain mets found.
9/12 - gamma knife and fractionated brain radiation.
1/13 - progression throughout body. brain mets shrunk/resolved. no more Tykerb.
2/13 - starting T-DM1 trial.
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Old 05-17-2012, 12:00 PM   #8
chrisy
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Re: Stopping Working

I know this was a long considered decision for you. I admire how you gave it your best shot, and how you are able to say with conviction, it is time to pull back. I do not see you sitting back eating bon bons - and it sounds like you have wonderful opportunities to continue some of your work with the school but at a pace and level that works for you.

Or set off in another direction entirely! You've had a heck of a year, and are probably still not at your full strength.

Good for you, making this decision and taking your first steps into the new life ahead of you.

with much love and admiration
Chris
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Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 05-18-2012, 12:41 AM   #9
Vicki revised
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Re: Stopping Working

I retired a few months ago, as soon as I was eligible and for a workaholic the 1st month was a big adjustment but I wanted to be able to put my health at the top of my list of priorities which wasn't possible while working, even though I telecommuted most of the time.

Now I am thankful that I don't have anyone scheduling my time, how my day goes doesn't depend on someone else's agenda or bad mood, and my stress is MY stress, not caused by work.

I love to garden, decorate and do crafts and have enjoyed that a great deal.

We've gotten lots of stuff done/fixed around the house that require someone being home when the worker's are here.

I will be volunteering at the library during the summer reading to children and also at my parrish's vacation bible school.

I've always wanted to learn how to take decent pix, where everyones heads are in the pic and a friend of mine has offered to help me learn to shoot and what can be done with pics with software.

Our local ACS and reach for recovery group have weekly painting classes for those of us still fighting and survivors.

Last, but not least, I am working on scrapbooks for both sons that I've wanted to do for years and kept buying the stuff, but never got around to it.

Yes, there are days I'm down and don't feel like doing anything or being around anyone. I allow myself one of those a month--stay in bed, read, snuggle with my cats, and plan what I'm going to do tomorrow. But by the same token, I want to enjoy and live each day as fully as I'm able to, while I'm able to.
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Lord, give me the comfort of Your embrace and acceptance of Your will.

3/11: DX: IDC, HER2++, ER/PR neg, stage 4, mets to liver. Primary tumor: grade 3; 11 cm. 2nd smaller tumor: ~2.5cm. Multiple affected nodes, 1 spot on liver. 6 rounds TCH prior to bmx.
7/11: Nothing left except Primary breast tumor now 1.5cm.
8/11: BMX, 17/17 nodes clear. No post-op chemo or radiation indicated. NED!
10/11: NED! Continue Herceptin indef.
2/12: Reoccurence of liver mets; both lobes. Tykerb added to Herceptin.
5/12: Progression of liver mets. Stop Tykerb, start Abraxane & Herceptin weekly.
8/12: Progression in liver and lymph nodes around liver and right kidney. Herceptin not working anymore! Stop Abraxane and Herceptin. Start Tykerb and Xeloda.
10/12: Severe side effects. 3 weeks break from everything.
12/12: It's working! All tumors gone except 2 (from 20+) Continue Tykerb and Xeloda. Brain and spine MRIs clear.
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Old 05-18-2012, 05:19 AM   #10
Pray
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Re: Stopping Working

I was not forced to stop work but I have several surgeries coming up so i started to volunteer at a pregnancy center taking care of their baby "store " its actually all free, donated new clothes and baby supplies. I can come and go as I please and I love it. No hard labor. (I love babies!) This is just what I came up with. Good luck to you coolbreeze. I am praying for you.
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Old 05-18-2012, 10:58 AM   #11
Ellie F
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Re: Stopping Working

Hi Coolbreeze
I know how much you reflected on your decision to return to work and feel glad that you gave it a try. If you hadn't you may have regretted your decision. I am sure something will emerge that will suit your talents and also give you fulfilment without the pressure of having to turn up and function optimally everyday.
Please let us know how it goes
Ellie
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Old 05-18-2012, 10:10 PM   #12
KsGal
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Re: Stopping Working

I know how much you enjoyed your job and working with the kids, so Im really sorry that you had to give it up. ((hugs)) Everytime I read your posts or your blog, all I can think is how you need to assemble your writings into a book. You are such a wonderful writer, so humerous. With a little extra time on your hands now, maybe you would be able to work on that? I don't know how much longer I will be able to work myself, but when I do quit working Im just thinking on doing things I have always wanted to do and haven't...take some cooking classes, maybe some online college classes just to learn some new things, plant a garden, join a swimming class. I don't know, but Im going to do my best to keep busy. I know you will too...
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Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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Old 05-19-2012, 12:06 PM   #13
CoolBreeze
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Re: Stopping Working

Thanks for all the great ideas. I'm taking them all to heart. And, focusing on my health is something that I am going to take literally. I eat pretty much cupcakes and candy now - I'm quite underweight which worries my doctor. I never had a sweet tooth before either. So my first order of business will be to get back to healthful eating the way I used to and try to bring my calorie count up.

Then I will try to get out once a day. Take my dog for a walk maybe although she is so routine oriented that if I do it twice at the same time, she'll start to beg at the same time every day. (She's a greyhound). On days I don't feel well, I can't have her jumping around me!

I plan to volunteer with the school and do their webpages still so maybe I can go in a few afternoons a week and just do that or anything else they need. There is plenty of work to go around, I know. I will have to be careful not to step on my replacement's toes.

I can finish my scrapbooks that I started. I must not like scrapbooking as much as I think I do since I have finished only one book in ten years. Maybe I'll look into digital scrapbooking.

So many people have told me to turn my blog into a book. That seems an impossible tasks - a blog is a blog and a book is something very different. But, maybe I'll take a look at it although everybody who has suggested it has to promise to buy a copy.

And, I will expand my webpresence. i started by adding a little forum (PM me if you want to know) and I am going to try to maybe make a little money somehow.

I think the important thing will be not to get up, get on the computer and stay there. I have to get showed and dressed daily, make myself a breakfast and plan to do something every day. Maybe if I write a schedule out it would help.

I appreciate all of your ideas and your advice. It's funny, before I had this job, at any time in the past, I would have said, "Bye-bye" with no problems. But, this job was special and it was my home and after 45 years of working to have found the place you know you belong and have that taken away from you - it's hard. But, I have agonized about it enough, I made my decision and I have told everybody.

So, hopefully I will find my post-work life rewarding as well and also healthy!
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http://butdoctorihatepink.com

08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

Im beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now Im 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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Old 05-19-2012, 02:16 PM   #14
KDR
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Re: Stopping Working

Coolbreeze,
The smiley faces you've used are remarkable and symbolic: you are finally in a happy, conclusive place. I'll lend you my only way out of a rut--leave the house early. Get up, get dressed and head for your writing space (mine: library). Work for two hours or so, then get back to the house business or volunteer work.
You can tell me to scat, but living on candy and cupcakes is just what cancer wants. As you are well aware, there are many new potions coming to us, so hang in there, baby. Something tells me you've got a long way to go.
Karen
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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 05-19-2012, 06:01 PM   #15
CoolBreeze
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Re: Stopping Working

Thanks Karen. I love your intuition and I sure hope it's true!

I'm not a "sugar feeds cancer" believer but I have always, my entire life, believed in eating healthy. I used to complain to my mother because she gave me lunch meat for lunch and it had nitrites in it that caused cancer. Boy, was I prescient or what?

So, this love of and desire for sweets is a new departure for me, and it started right after c-diff, when I was only able to eat the opposite of everything I'd always eaten my whole life. When your colon doesn't work, you have to stick to processed foods and white flour and nothing with bulk and no vegetables. And, I was down under 90 pounds so my doctor wanted me to eat anything that would put weight on.

And now that is what I am eating still, but my colon can handle normal foods again. Right now I'm so tired; I get up, get ready for work, go, and people give me treats because they worry about my weight. (The school has a cupcake brigade and they bring me gourmet cupcakes!) I might bring a banana or something but that's it until dinner, which is usally take-out as I'm too tired to cook and my husband is not good at it. Then I eat ce cream, cake. I guess I never imagined myself doing that, but since I am severely underweight still I haven't stopped myself.

So, as soon as I'm done with work, I'll go back to healthy eating. I have been given a cookbook for cancer patients to review and I'll make some of the recipes and test them, and I will be the one going to the store and buying food and I'll be able to cook again, so I will go back to my normal mostly vegetarian diet and I'll manage this sweet tooth by allowing myself one piece of candy a day like I used to. And, I am going to buy one of those popsicle makers and make popsicles with protein powder and fresh fruiit so I can satisfy my craving that way. Funny how quickly a lifetime of healthy eating can go out the window.

You are right. I don't want to leave my job but I'm now accepting of it and looking forward to the challenge of creating a rewarding life without having a job. My son is 15, so I still have a kid to drive around - that will be good for me too.
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08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

Im beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now Im 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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Old 05-20-2012, 01:54 AM   #16
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Re: Stopping Working

Hi Cool Breeze:
Your posts are always so smart and strong.
Does your school have a college application mentoring program -- for juniors and seniors who don't have parental help and really need an adult to steer them to the right college, help with apps and financial aid forms. It can really make a difference in a young person's life.
Linda
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Old 05-20-2012, 07:50 PM   #17
Vicki revised
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Location: Alabama
Posts: 121
Re: Stopping Working

How blessed for you to spend the time with your son between now and when he leaves home! Of course, if he's like most 15 yr olds he isn't excited about more maternal bonding time, but since he doesn't have his license yet he may just have to endure it!
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Vicki
Lord, give me the comfort of Your embrace and acceptance of Your will.

3/11: DX: IDC, HER2++, ER/PR neg, stage 4, mets to liver. Primary tumor: grade 3; 11 cm. 2nd smaller tumor: ~2.5cm. Multiple affected nodes, 1 spot on liver. 6 rounds TCH prior to bmx.
7/11: Nothing left except Primary breast tumor now 1.5cm.
8/11: BMX, 17/17 nodes clear. No post-op chemo or radiation indicated. NED!
10/11: NED! Continue Herceptin indef.
2/12: Reoccurence of liver mets; both lobes. Tykerb added to Herceptin.
5/12: Progression of liver mets. Stop Tykerb, start Abraxane & Herceptin weekly.
8/12: Progression in liver and lymph nodes around liver and right kidney. Herceptin not working anymore! Stop Abraxane and Herceptin. Start Tykerb and Xeloda.
10/12: Severe side effects. 3 weeks break from everything.
12/12: It's working! All tumors gone except 2 (from 20+) Continue Tykerb and Xeloda. Brain and spine MRIs clear.
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Old 05-20-2012, 08:13 PM   #18
Joanna J
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Re: Stopping Working

Cool Breeze,Sounds Like It May Be Time To Plant a Few Flowers For You To Appreciate & Enjoy,Nothing Like A Peaceful Place to work in & set and watch the Flowers grow w/your favorite beverage (mine is Ice Tea) Gives me a Reason to Get Up in The mornings,I Plan on adding a small waterfall,it gives me enjoyment & peace,Hope This Inspires You,Joanna J
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found susp.lump Feb 2009
DX Feb 2009 ...Her2+ stage IIa ER/PR- grade 3
partial mast. Right breast,clear margins
chemo (2) carboplatin & Taxotere
could not finish chemo (hospitalized because of infection)
37 rounds radiation
Herceptin (1 yr.)
No clinical trials
Jan.2011 BRAC 1/BRAC 2 Neg
Aug.2011 clear bone/catscan NED
Apr.2012 clear digital mammo
& ultra sound of breasts
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Old 05-20-2012, 09:07 PM   #19
Pray
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Re: Stopping Working

I really think you will write your book on you. Your writing skills are great and you are very well spoken. I would gladly buy and read it! I'll be waiting for it.

Peace.
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Old 05-20-2012, 11:54 PM   #20
KsGal
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Re: Stopping Working

I agree with Pray. Also, as far as the sweets issue, I have done the same. I've gained something like 12 pounds (on a small frame) because sweet things are the one thing that still tastes the same to me on chemo. Everything else tastes...well I don't have to tell you, but not normal! I don't think there is anything wrong with a day on the couch eating bon bons as long as we remember to not do it every day of the week. We certainly deserve a day of rest, relaxation and sweets...all of us.
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Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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