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Old 06-18-2009, 04:29 AM   #1
Pam P
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My decision on disability

I posted a couple of months ago when I was 1st starting to think of disability. Now I've done my research and think I'm at a decision point. I want to run this by you to see if you see any red flags. Hard to put all the pieces together concisely, I'll just list them:
Starting the process:
-make formal notice with my employer for medical leave with a statement from my doctor. This would be a 2 month leave. During the 2 months my employer will continue to pay me my regular salary & benefits.
-as soon as I start the leave I start preparing the paperwork for full disability through my disability insurance which is through my employer. Doctors statement; release statements for SS & medical info, my application & my employers sign off.ONce they're submitted they have 30 days to determine if I qualify.
-If I am approved (and the policy states that stage 4 bc qualifies) my full disability begins at the 3rd month. They will begin to pay my monthly health premiums (I keep my same Blue Cross coverage), plus 2/3 of my pension conribution plus 2/3 of my salary.
=I must not work at all during the 2 month leave & approval process, but once approved I am allowed to work part time not to exceed 1/3 of my monthly income (so basically if I can arrange this combo my monthly income would be basically the same.
-So far so good, right? work part time for full time pay & still get same health benefits.
-I could continue with this arrangement until I reach age of full retirement; then I could take retirement.
-After a year or so my dis. ins. would determine if I should apply for SSDI, but I'm not eligible to do that if I'm working, so they would not make me to that & things would continue unchanged. If it came a time when I was unable to work they would make me apply for SSDI & that income would offset what my disability pays plus my insurance would be changed to medicare and a supplement.
=I've talked directly to a rep who works directly with this in the Board of Pensions who holds all these disablilty insurance benefits, to my tax guy to see if there are any red flags he sees. Neither gave me any reason to hesitate. I talk to my financial rep today about my little IRA/savings etc.
=I talked to my boss who has been supportive beyond measure. Told him what I'm thinking and asked if I could negotiate a portion of my job to continue for me at a pt level not to exceed my income limit. He seemed very willing to make that work.
-IF I do this maybe it will give me more time to rest, make work & schedule less stressful & help me stay stronger to fight the cancer.
-Mental health - if I can continue to work a little each week it will keep my brain working, give me continued colleagues & network & support & income - yet free up my time to use my energy on fun things of my choice.
=I've discussed with a couple close friends, my son, no one has really said 'bad idea', mostly the opposite.
-If I go ahead I'd like to do this now - take the 2 months off in the summer & go back to work in the fall. That means deciding now!
-I'm agonizing - excitement over not having to work so much, fear of will I miss it, the unknown, the mostly irreversible nature of it; I could probably change my mind in the 1st couple of months, but after that I can't be assured that my full time position would be open to me again. Kind of like selling your house & moving to a smaller one. Once you've moved & sold the 1st house if you don't like it you can't go back to the 1st one.
-And it's emotional - leaving/changing the job/identity Ive had for 25 yrs, sadness, anxiety, yet some sense of thinking it mght be great - just don't know.
-My doctor has said he'll do what ever I want him to do regarding his part. He says no question I qualify if I want to do this.

So, wise women - and men, what do you think? any red flags/cautions? suggestions? Thanks. Pam
__________________
Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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Old 06-18-2009, 05:42 AM   #2
Colleen007
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Hi Pam,

You might want to double check that you would wait for a year before applying for SSDI. When I went on long term disability 2.5 years ago, I had to apply for SSDI right from the start. I get my SSDI payment each month and the LTD carrier supplements the difference to come up with my 60% of salary. Also, you are allowed to work a limited number of hours while you are on SSDI (off the top of my head, I’m not sure how many), so you might want to check in on that as well. It might not be the 1/3 time that you are looking at now (but it will be something).

This will be very difficult for you since you have been with the company for so long. But it sounds like you have a very supportive boss so continuing to work a little bit might be good for you. For me, I went on disability (full-time) and haven’t looked back. I am lucky (as you are) that my employer still continues my health benefits while I am on disability.

Best of luck with this decision…I worked in employee benefits in my prior life and other than what I pointed out above, I don’t see any red flags.

Colleen
__________________
Diagnosed 10-03-2005 (34 wks pregnant, 38 yrs old)
Lumpectomy Nov-2005. 10/18 Lymph Nodes impacted
Mets to liver, spine & femurs (thus being stage IV right from the get-go)
ER-, PR-, HER2+
Taxol/Herceptin/Zometa started Dec-2005. 11 cycles of Taxol.
Sept-2006: PET/CT scan of mets to liver, spine and femurs - Stable. Activity in R breast & mediastinum (not seen in prior scans).
Navelbine (3 wks on/1 wk off) as of Oct--2006 & continued Herceptin (every 3 wks) & Zometa (every 6 wks)
Jan-2007: PET/CT Scan - Stable. Continued Nav. through March-2007, then Herc./Zom. only after that.
June-2007: PET/CT Scan - activity in mediastinum. Back on Navelbine as of July-2007.
Scanned Quarterly since Oct-2007 - a few small scares, but otherwise stable due to continuing weekly Navelbine, Herceptin and Quarterly Zometa.
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Old 06-18-2009, 06:24 AM   #3
Sheila
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Pam
As soon as I went from short term disability to long term, I was forced to apply for SSDI. Once I received that (6 mos after my original disability began), the company designated insurance company began fighting with me about paying the amount to make up the difference. This went on for about 9 mos, I finally just gave up...so I only receive SSDI, which for me in Illinois is about 1578.00 per month, before taxes, which is a long cry from what I made through company disability, which was about 2900.00 tax free per month. I had to be off a full year before Medicare took over fro insurance, but since I am covered through my husband, i do not have to take it which saves me money as they charge for part B I believe, which covers certain things. Part A is free, but I remember the Part B was about 187.00 per month. As far as working goes, I am only allowed to earn a certain amount per month and stay on SSDI...which I think is 900.00 but I am not sure.
When I first was off, i couldnt wait to go back to work....I still miss it, but have filled my life with more important things, like health, grandchildren, enjoying each day...I miss the money but wouldnt trade my life now for anything! I think you are making the right decision.....
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"Be kinder than necessary, for everyone you meet
is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 06-18-2009, 06:33 AM   #4
Pam P
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Thanks, Colleen. I have asked about the SSDI and how that impacts my disability insurance. As I understand it it won't be a problem and the SSDI won't even be involved as long as I continue to work a few hours a month. I do not qualify to apply for SSDI if I am working at all, so therefore my employers dis. ins. just continues according to their policy. If after a year I am not working any hours only then they would get the SSDI involved. I can not afford to live on 2/3 of my salary so I would make every effort to continue to word 10-12 hrs a week as long as I am able.

These benefits seem almost too good to be true - rather than just jumping at an opportunity for a good thing - I'm wondering if some bad karma will come back to bite me for being greedy, taking advantage of a situation, getting something for nothing etc. Why can't I just accept it without guilt and be happy and at ease?
__________________
Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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Old 06-18-2009, 06:35 AM   #5
Pam P
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On SSDI in 2009 you can't earn more than $980 per month. On my disability I could make a couple hundred more than that a month without penalty.
__________________
Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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Old 06-18-2009, 07:40 AM   #6
kk1
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Hi Pam;

You may not be able to make this work so that you are getting more than 2/3 of your salary. In most cases your employer private disability will subtract what ever you get from social security from what they have to pay you. Private insurance often subtracts any part time work you do from the amount they pay you also. That is t say you are only ever guaranteed 2/3 of your salary, if you take any form of payment from soc sec disability, ssdi or work nominal part time they reduce your benefit by the amount you receive from other source.

That's how it works for me anyway.....maybe your private insurance is different but I would double check. This is also why they usually require you to apply for SSDI right away....so that if you qualify they can pay less.
__________________
KK1
April 2004 de novo metastatic left breast 1.5cm her2++,er+/pr+ with 2 small liver mets
weekly taxotere,herceptin, xeloda
Sept 2004 NED-3 herceptin, zoladex,aromasin
Dec 2006 recurrence in liver
Feb. 2007 liver resection left lobe removed-herceptin, zoladex, switch to Arimidex
NED 16 months added zometa
May 2008 new lesion in liver 15mm Tykerb/Xeloda/Herceptin
July 2008 stable...yeah!
Sept 2008 NED again !!!
Jan 2009 fell off the wagon again spot back in the liver and fell out of menopause.
Feb 2009 RFA and 2nd liver resection to remove spot ---back on the NED wagon again continue Tykerb, Herceptin.
March 2009- oophrectomy added Femara and bi-annual Zometa
May 2009- scans clear but suspect lung nodule
June 2009- Lung VAT wedge resection to remove nodule---fungus ball not cancer!! phew
Aug 2009- NED
Nov 2009-scans again clear YAHOO!
March 2010- scans clear continue Tykerb, Herceptin, Femara, Zometa Q6mo
Nov 2009-Nov 2019 scans clear done every 6 months


Feb 2020 - Fell out of the NED wagon hard! single liver lesions and large infect cyst. 3 weeks in ICU.
March 2021- 5 cycles perjeta, herceptin, navelbine. lesion stable.
June 2021 - 3rd liver resection to remove single liver lesion. Continued perjeta, herceptin.
Nov. 2021- PET scan show 5 hot nodes near liver. 9 cycles Kadcyla
June 2021- PET scan shows progression. nodes size unchanged but even more SUV uptake.

July 2021- start ENHERTU

Last edited by kk1; 06-18-2009 at 07:43 AM..
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Old 06-18-2009, 09:05 AM   #7
Pam P
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Here's another question I thought of that concerns me. I emailed the question to the disability service provider and got the response below. This could be (good healthwise) but bad financially - out of benefits - out of work. Any others on disability where this has happened? How concerned should I be about this?

Pam's question: If at some point my cancer stabilized so that I would for a time not be actively on chemo (they don't really call it remission, but rather no evidence of disease) yet that doesn't change the fact that I could be on other types of maintenance medication does that affect my disability? This has happened to me only a couple of times during the last 8 years and only lasted for a few months each time. It doesn't mean I'm 'cancer free' cured or whatever, I still would be stage 4 breast cancer; the diagnosis would be unchanged (unless/until a real cure for cancer is found as we all hope).
Reply from service agent:
When you get to the point where your cancer stabilizes, it is up to your doctor to say whether or not you are ready to resume working. If your doctor states you are ready to return to work full time, your disability benefits would end and you would be eligible to return to work.
Aetna (the Vendor we use to administer disability benefits) will conduct periodic reviews with your treating doctors to obtain updated treatment plans; medications prescribed and taken and return to work expectations. Aetna will follow your disability status very diligently.
If at some point you are not in active treatment and your cancer goes into remission, your disability benefits could be terminated. If you receive a termination notification from Aetna and you do not agree with the termination determination, there is an appeal process you can utilize in bringing additional medical information to the attention of the appeals committee to confirm your total disability.
If you agree with the determination to terminate disability benefits, your disability benefits would terminate and you would be eligible to return to work.
If you return to an ELCA employer and are again sponsored in the ELCA Benefits Plans and you become disabled within 6 months of being termed from disability status, you would need to submit current medical documentation that indicates your current disability results from the same disability that you were termed from 6 months prior. You would not need to submit another application only updated medical information to have Aetna make a determination. If they determine you are totally disabled, the two month waiting period would be waived and disability benefits would begin again as thou they had not been terminated. If you become disabled after the first 6 months have passed and you are being sponsored by an ELCA employer, you would need to submit a new application and go thru the disability process again in order for a determination to be made.


__________________
Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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Old 06-18-2009, 12:14 PM   #8
StephN
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Wink

Hi Pam -
The info in the reply from the service agent makes sense to me. I know that being on disability I will have a 5-year review in a couple of years. Since I had mets to brain, they really moved me along fast at the outset.
But here I am, and I think having less stress in my life has made a difference in my healing and staying NED.

If you can get the "ends" to meet, you would have the summer and I hear from your post that you could use a breather from the responsibility of supporting yourself and keeping benefits to cover this disease.
__________________
"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 all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 06-19-2009, 06:17 AM   #9
Lori R
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Posts: 454
Pam,
We share the exact same concerns about what happens when we receive a respite from constant treatment while on disability.
I've tried contacting multiple "offical" sources; American Cancer Society, Insurance broker but could not locate anyone with "real world" experience.

I will be back at my Drs next week and I'll push the nurses about what kind of push back they've received. I've been tentative in my questioning at the Drs. but will push harder.

I'm with ya sister....concerned about relenquishing my job and then when it is too late have an insurance company pull the rug out. (sorry....just not willing to put my trust in the benevolence of a large insurance company with revenue objectives)

Thank you for starting this post and I am hoping someone who has been down this road can help.

Lori
__________________
2007
Oct - Diagnosed - Stage IV
5 c.m. IDC - Left Side er/pr- Her2+++
Node + 2/14 - Single Liver Met
Double Mastectomy
Nov - Begin T+H
2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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Old 06-21-2009, 07:27 AM   #10
Joan M
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This is very interesting to me but I admit I don't understand exactly how it works.

I'll be 56 in October. So far I'm able to work full time, but the company had layoffs recently and there's been a so-called "temporary" 10% salary cut, so who knows what's next.

(If I were layed off now I could still work but that would mean going to a new job with advanced cancer, which to me would be very stressful. I mean, what do I say at a job interview about needing to come in late morning every three weeks on Tuesday because I go for my Herceptin treatment, or when I have to go for scans or doctors' appointments? I realize I'm not obligated by law to tell my cancer history, but the whole setup would be stressful, like a sword hanging over my head or waiting for the other shoe to drop. I'd worry about it every day. I've been at this company for about three years, after being forced to look for new employment because my former employer of almost 10 years relocated to N.C.)

What is the most pared-down disability scenario? That is, without working part time. Would it be normal to go on short-term disability first and then long-term disability through the company, and apply for SSDI while on LTD? I also understand that advanced cancer patients have a two-year wait for Medicare. Even though dialysis and ALS patiets are eligible immediately.

Pam: What's confusing to me is how do you work part-time and the company (they?) still pays for their share of your benefits? Doesn't LTD run out?

-If I am approved (and the policy states that stage 4 bc qualifies) my full disability begins at the 3rd month. They will begin to pay my monthly health premiums (I keep my same Blue Cross coverage), plus 2/3 of my pension conribution plus 2/3 of my salary.

Also, Colleen, how is it that the LTD carrier is still supplementing you 2.5 years later? Again, doesn't it run out?

Lori, I would agree in that it seems very hard to get straight "official" answers about these issues.

Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 06-21-2009, 09:01 AM   #11
Colleen007
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Location: Franklin, MA
Posts: 131
My LTD continues as long as my doctor continues to say I am disabled. She said she will continue to support my disability "forever" (however long forever is for me). We just have to fill out paperwork approximately every 6 months to document that I still am undergoing treatment every single week and list out the various side effects associated with treatment.
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Diagnosed 10-03-2005 (34 wks pregnant, 38 yrs old)
Lumpectomy Nov-2005. 10/18 Lymph Nodes impacted
Mets to liver, spine & femurs (thus being stage IV right from the get-go)
ER-, PR-, HER2+
Taxol/Herceptin/Zometa started Dec-2005. 11 cycles of Taxol.
Sept-2006: PET/CT scan of mets to liver, spine and femurs - Stable. Activity in R breast & mediastinum (not seen in prior scans).
Navelbine (3 wks on/1 wk off) as of Oct--2006 & continued Herceptin (every 3 wks) & Zometa (every 6 wks)
Jan-2007: PET/CT Scan - Stable. Continued Nav. through March-2007, then Herc./Zom. only after that.
June-2007: PET/CT Scan - activity in mediastinum. Back on Navelbine as of July-2007.
Scanned Quarterly since Oct-2007 - a few small scares, but otherwise stable due to continuing weekly Navelbine, Herceptin and Quarterly Zometa.
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Old 06-21-2009, 12:16 PM   #12
StephN
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Location: Misty woods of WA State
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Thumbs up

Seems to me that Pam would qualify under the scenario that Colleen just mentioned.
Our doctors (and their office staff) also should know the ins and outs of getting their stage IV patients onto these assistance programs and making the system work for them.
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"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 all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 06-22-2009, 04:10 AM   #13
Pam P
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Location: MN
Posts: 731
Joan -
It's confusing to me too. Like Colleen, once I'm approved for LTD through my employers disability benefits program, as long as I continue to qualify these benefits would run until I reach the age of full retirement.

And, yes, once I am approved for LDT (after the 1st 2 months of short term medical leave) if my doctor says I am able to work at some restricted level, I will be able to earn a certain amount each month without it effecting my disability coverage.

That's according to my company's policy. I'm sure each company's policy is different in it's rules; and SSDI is different still in it's procedures and restriction amounts. It makes it hard to sort through all of the scenarios and possibilities.

With your possible lay off situation it sounds like now is the time for you to really research what your options might be through your company's disability benefits. If you decide to go that road, having to find another job, but only on a part time level to supplement disability income maybe wouldn't seem as stressful as a full time position. I agree that seeking a new full time position with advanced cancer would be tricky. You are right, no need to disclose your cancer history, but we know going in what the time away from work for medical treatments, scans, and being ill from side effects amounts to on a regular basis.

Let me know what you find out as you research.

Thank you to everyone for your helpful insights and own experiences and knowledge.
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Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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Old 06-22-2009, 07:04 AM   #14
Midwest Alice
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Posts: 455
Thank you Pam, Colleen, Steph, Shelia, Joan, Lori and KK for your discussion. I find all the disability stuff very confusing. Though not at a time in my life where I need disability I need to be informed. I am reading with interest. Thanks for you wisdom and gift of sharing.

Make it a great day!!
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Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!

1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."

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