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Old 03-05-2012, 01:06 PM   #1
Ceesun
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Social Security benefits??

Have any her2 sisters applied for and received social security due to early retirement or being unable to continue your employment? If so, was this a long, difficult process? (I am not referring to long or short term disabilities paid by your employer). Thanks, Ceesun
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Old 03-05-2012, 02:17 PM   #2
NanaJoni
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Re: Social Security benefits??

I took early social security at age 62 - was a really easy process at our local SS office. I applied a couple of months before my 62nd birthday and got my first check in December (my bd is in November). I also took early retirement from my job at a local university and our HR office was great to work with. Ended up with a net monthly income within a few dollars of what I made working. You also can work while receiving social security as long as you don't earn over a certain amount - if you go over they will take back a pretty big amount. It still gives me an option to fill in part-time at the university for a little extra money for traveling or special things. I forget what paperwork I had to take with me to file for SS but you should be able to call and find out.
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Joni -64 yrs old -
3/01/10: found lump in rt.breast
3/12/10: mammogram/ultrasnd/biopsy-invasive bc & DCIS; 2 tumors (2cm er-/pr-/HER2-& 1.8 cm er-/pr-/HER2+); grade 3;poorly differentiated
3/24/10:sent.node biopsy clear
3/31/10:bi-lateral mx.;atypical ductal hyperplasia-lft side
4/21/10:wound revision-infection/scarring 4/28/10:seromas both sides
5/21/10:port installed,TCH chemo (6 x 3 wks); Herc,-1yr; 33 rad tx after chemo
07/2010: port not working-2nd port didnt'work;3rd port opposite side.
07/2010: 2 weeks after 3rd port surgery, threw 3 pulm. emboli-IVC filter installed; warfarin
08/2010: hospitalizations w/3 of chemos; decision to stop after 4th-on to radiation in Oct 2010;Herc cont.
12/03/2010 - finished 33 rads Hooray!! cont. Herc. every 3 wks
4/2011 - pneumonia ??? Nope-radiation pneumonitis. No more Herc.
5/2011 - NED!!! port out.
8/2011 - clean PET & CT scans.Still NED
7/2012 - Still NED/very blessed.
2/2013 - 6 mos checkup-all clear. CA2729 down frm 13 to 11.
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Old 03-05-2012, 02:33 PM   #3
Joan M
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Re: Social Security benefits??

Ceesun,

The SSA considers all stage 4 bc survivors as eligible for Social Security Disability (but Social Security Income, or SSI, is based on financial need. So a survivor may qualify for SSD but not SSI).

The SSA treats survivors as a priority and quickly processes applications.

A survivor can work some hours while collecting SSD, as NanaJoni mentioned.

Joan
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Old 03-05-2012, 03:51 PM   #4
7andcounting
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Re: Social Security benefits??

I have been told that if you go on SSD that you automatically get Medicare soon after. What if a person wants to stay with the health ins. they have through their spouse's employer?

Anyone know about this?
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Old 03-05-2012, 04:06 PM   #5
Sheila
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Re: Social Security benefits??

I received Medicare 6 months after I became eligible for Social Security Disability. I have Medicare Part A and that only covers hospitalization. I chose not to take Part B as I am covered under my husbands insurance...i did have to get the OK from his insurance to drop it...but I was paying alot for it and they paid nothing on me. I have been on Social Security Disability since 2004.
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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 03-05-2012, 06:21 PM   #6
Joan M
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Re: Social Security benefits??

Sheila, you were lucky. I'm under the impression that a survivor has to be on SSD for 2 years before getting Medicare if under age 65. The rules must have changed.

There are 3 ways to get Medicare under that age: if you have ALS you get it immediately. I believe that also applies if you're on renal dialysis. If the SSA declares you disabled for any other reason, you get Medicare after being on SSD for 2 years.

https://questions.medicare.gov/app/a...nder-age-65%3F
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Old 03-06-2012, 10:52 AM   #7
bevilj
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Re: Social Security benefits??

Hi,

I was on medical leave from work for approx. 6 months during my first course of treatment (surgery, chemo) and went back to work part-time when I started radiation (I was 38 at the time). 2 years later, I'm still working part-time. I receive long-term disability and social security insurance which offset my reduction in pay due to my part-time disability status. Because of stage IV status, I was 'rushed' through the review/approval process. I did have to wait 2 years for Medicare, however. I would be eligible now but have waived coverage as I continue to get my benefits through my employer. I did check with my employer to make sure that I was ok to do so before I did it. It is my understanding that when I stop working and want to enroll in Medicare benefits, I won't have a waiting period.
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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 ½. 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.

Last edited by bevilj; 03-06-2012 at 10:53 AM.. Reason: corrected error
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Old 03-06-2012, 01:51 PM   #8
Kmswilson
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Re: Social Security benefits??

I am 37, diagnosed at 36, stage IV from the beginning. When I went on long term disability through my employer, the LTD company said I was rewuired to apply for Social security benefits on behalf of myself and both of my children. Because of the stage IV diagnosis, it was a speedy process. I filled out all of the paperwork for myself online, and I think I had to call and complete the application for my kids by appointment, but we did it over the phone. It was really very simple. Much easier than dealing with the LTD company through my employer by far. I've been receiving benefits since last July, and I've had no issues at all.
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12/27/10 - IDC, rt breast (approx. 15 cm), lymph nodes, age 36. 1/7/11 - stage 4 IDC, extensive liver mets, Bone mets (spine, sacrum, rib, sternum, upper arm), ER-/PR-, HER2+++; 1/12/11 - port, 1/17/11- startweekly Taxol/Herceptin, monthly Zometa
3/8/11- decrease in all tumors, bones healing. 3/11- 3 wks on/1 off Taxol/Herceptin, +Zometa
6/6/11 - decrease in all tumors, healing bones, 2-4 new liver lesions. 3 wks on/1 wk off Taxol/Carbo/Herceptin, +Zometa
7/29/11 - liver progression, others stable; 8/11-drop taxol/carbo, start Navelbine
12/11 - liver progression; begin AC, drop Herceptin;
1/12 - liver enzymes normal, 2/6 results show regression in liver, stable others, but 9 tiny brain mets (largest 7 mm). Begin 13 WBRs 2/6; 2/29-start Tykerb, 3/7, start Xeloda
5/2012- liver progression and regression, liver biopsy confirms HER2+++. drop Xeloda, start Herceptin, Tykerb, Zometa.
5/2012- brain MRI shows all lesions gone except 1, 2mm shrinking!
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Old 03-13-2012, 12:43 AM   #9
Vicki revised
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Re: Social Security benefits??

I'm applying now but am confused and could use advice. Do stage IV'ers have the 5 mon waiting period?

Also when do they consider the start of the disability?
1) The day I was diagnosed stage 4 withs mets, a year ago and went on FMLA; working from home as I was able or,

2) when I finally realized I couldn't do my job anymore even part time due to chemo brain ans other side and after effects? I submitted my retire papers but had to wait 60 days.

3) the last day I worked after being given compassionate leave with full pay? I'd run out of all leave time and had even gone off payroll but was granted a special paid admin leave until my retirement took effect, and was not to do any work or even check in?

4) my retirement day when i was permanently reclassified as "retired"?

Is it the start of the terminal illness, when I quit working full time, or when i converted to the retirement system?
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Old 03-13-2012, 12:52 AM   #10
Vicki revised
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Question Re: Social Security benefits??

Also, was the med info from the primary providers (oncolo and surgeon)with the test results and diagnosis sufficient or do they want info from every lab test and scan done? i've had close to 100 so far.

Thanks!
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Old 03-13-2012, 07:02 AM   #11
Ceesun
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Re: Social Security benefits??

Vicky, You posed a lot of good questions....I spoke to SS a few days ago as I was not sure what to put as my start date. The answer..whenever you were not able to continue your employment....which could be a couple different scenarios for me. Also, I believe the 5 month waiting period is in effect for all...so it would be 5 months from the above date. Working on the forms right now. I am not sure if an attorney is needed or not....can anyone comment? Ceesun
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Old 03-13-2012, 09:48 AM   #12
Sheila
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Re: Social Security benefits??

In most cases if you get an attorney to obtain SSD benefits, they will get a percentage....make sure and ask questions before involving one and then paying a percentage!
__________________
"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 03-13-2012, 11:58 PM   #13
Vicki revised
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Re: Social Security benefits??

Got a call from the local office w/in 24 hrs of submitting the report online. He was very nice and told me those in my conditiom are usuallly approved with a few weekd. He assured me they would take care of getting any records they need.

When i explained the complicated way my Fmla was handled he said it is usually the last day you are are able to work, but since I was dx 8 mons before that and was just using up all my leave and doing a minimal amt of work at home in bed he said it may be when i was dx.

Yes,the 5 mon wait is from the date i filed but I'll get more than i expected. Just hate to e reminded constantly that I am terminal, incurrable.
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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 03-15-2012, 03:14 AM   #14
Jackie07
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Re: Social Security benefits??

Vicki Revised,

My In-laws' pastor, the late Dr. Joe Weldon Bailey, had stated after his skin cancer diagnosis to his oncologist: "Everyone's terminal!"

We do have members who were stage IV with liver mets and are now NED! Please go to the 'Calling all stage IV Sisters' thread http://her2support.org/vbulletin/showthread.php?t=48453 and then look them up. I believe AndiBB has been NED for over 10 years after having mets to liver...

The SSA turned down my aplication because I was working; because I had been working; because I ... We found a local attorney who runs the biggest advertisement on newspapers and phone books. (Was told to 'come back after you have been turned down by the SSA.') After our initial appointment, he referred me to another (affiliated?)attorney because my hearing had to be done at the town where I last worked.

So I received a 'partial' after the hearing... [Yes, even with my brain tumor (Grade II) history.]
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Last edited by Jackie07; 03-15-2012 at 03:18 AM..
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Old 03-21-2012, 05:48 PM   #15
Carol.hope
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Re: Social Security benefits??

If you decide to get an attorney, do NOT sign up with a national firm that advertises over the radio. I wasted a year with them not even understanding my situation at all, just wasting time. In the end it was a lot of work to fire them and find somebody local who could see me in person and know I could not work. She found all the evidence needed in the 1-1/2 years of papers that had already been submitted, and got my approval at the very last stage possible. I think once they've decided on the date you could not work (and didn't!), you can start getting SS 5 months after that. Two years wait for Medicare, but that is counted from when you couldn't work, not when they made the determination of approval. Yes, you can keep your own medical insurance if you have it. They would love you to do that. Medicare can be your secondary insurer, paying part of your copays.

An attorney gets a set amount maximum, and to me, it was worth it. Not having to deal with all those harsh, non-understanding people and rules and forms would have been great, and in the end, the attorney did save me much hassle. She works in Eldercare and knew all the rules and procedures.

Good luck!
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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 04-03-2012, 02:13 AM   #16
Vicki revised
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Re: Social Security benefits??

I didnt win the lottery the other night, but...I was approved by SS disability 17 days after applying. AND, contrary to what they told me verbally and what is on their website, they determined I became disabled, not on my last day I went to the ofice, but on the date I was diagnosed--8 mons earlier.

My husband did some online banking early morning last week and woke me to ask if I knew why we had a direct deposit of 5 figures from the gov. 2 days later I received my letter.

WHEW! One less thing to deal with, and now we can catch up with our bills.
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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 04-03-2012, 08:23 AM   #17
Carol.hope
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Re: Social Security benefits??

Congratulations, Vicki, on getting one more project resolved. I think SS understands Stage IV better than any other issue. May your life go a little easier now.

Carol
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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 04-03-2012, 10:57 AM   #18
Ceesun
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Re: Social Security benefits??

Well done.....congrats! Ceesun
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Old 04-03-2012, 03:55 PM   #19
kk1
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Re: Social Security benefits??

This entire thread is interesting and enlightening. I had been on ss disability for 3 year, went 2.5 years without a reoccurrence and clean scans, upon review the soc. security admin decided I was no longer disabled. Despite the fact that I am still and probably always will be in treatment .

So I went back to work part time, that's all I can do. Lucky that my previous employer jumped at the opportunity for me to come back. Not sure what would have happened if I had to go back out on the street and find a new job for the first time in 20 years.

My initial application was very easy, but the disability was considered the first day I stopped working not when I was diagnosed stage 4. I then had to wait 3 months before any payments started. After 2 years I was eligible for Medicare and my husband's company required that I switch.

Note sure what to make of all Other stories on this thread other than there is a variety of descision happening at the approval end.

If you make more than 1000/month even partime, unless you are in the 9 month grace period for the ticket to work program I am told you can,t get sw disability.
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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
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