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Old 08-21-2012, 09:04 PM   #1
Mtngrl
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$$ For Stage IV Sisters

I was told last year when I was diagnosed that being Stage IV qualifies me for Social Security Disability. For some reason, it took over a year for that to sink in.

I've been paying in to Social Security since I was 16 years old. I guess I thought I'd have to prove I'm actually disabled, and I'm not. I feel fine.

It finally dawned on me that I might as well apply. It's pretty easy to get it started online. I did that on July 24. Unfortunately, I didn't notice two things. One is that there's a separate disability report (or whatever they call it) that I should have filled out online. The other is that my local social security office needs a hard copy of the application, with a "wet" signature from me and from a witness.

But no worries. I was able to do that in person at the social security office. Then I found out that my benefits might be back dated to my date of diagnosis. That will be a pretty big lump sum.

You don't have to actually be disabled. In my in-person meeting, the bureaucrat asked me to confirm the basis for my claim. I said "Stage IV breast cancer. " He said, "Is that all?" I said, "That's enough. It's terminal." He didn't bat an eye. THAT was weird. But OK. If I had his job I might have to turn off my empathy too. I bet he hears all kinds of tales of woe.

Oh--the other thing I learned is, don't try to bring your knitting into a building with a Social Security office in it. They won't let you take it in, nor will they hold it for you. I had to go to the bus station and check it with the nice folks at Greyhound. An hour round trip on the subway. And $5. Oh well.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 08-22-2012, 12:28 AM   #2
Jackie07
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Re: $$ For Stage IV Sisters

Amy,

Thanks for sharing your experience.

About the knitting - I guess any sharp object has the potential of becoming a 'weapon'... And the rolls of yarn can have grenades hidden inside? And the office is technically considered a Federal building... It's interesting that the Greyhound staff did not think it's a problem. (I'd bet that's not the first five dollars they'd earned from holding knitting [or other type of] bags for their riders.)
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7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
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Old 08-22-2012, 04:13 AM   #3
Redwolf8812
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Re: $$ For Stage IV Sisters

Thanks for the info, Amy! I've been struggling with this myself. I don't always feel disabled. Most days I enjoy going to work. But the days when I don't feel well really take their toll on me, physically and emotionally. I'm burning through my sick time. My husband tells me not to worry about the money, but really, who ever takes that advice? My job allowed me to adjust my hours so I can put my 8-year-old on the bus in the am, instead of having to put her in before-care at school. My co-workers are great, but when I stay home, I feel so much more relaxed. I know I should bite the bullet, quit whining, and put myself out on disability. I could probably put up a better fight against the stupid cancer.

Oh yeah, and then there's the "advance benefits" I could get from my life insurance, if me and my doctor are willing to say I have less than 6 months to live. The nurse said they'd do it, even though they feel I "probably" have more than 6 months (I was told just don't ask them to commit to saying I have more than 2 years. Gee thanks, I didn't ask THAT), but I'm not comfortable with lying about something so serious.

Blah blah blah. The rantings of a crazed stage 4 breast cancer patient....
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Penny

July 2010 IDC grade 3 stage 3 er-/pr-/her2+++, BRCA2
Skin mets 11/10
1/12/11 Surgery path - complete response
Rads 2/11-4/11
Liver mets 11/11 now stage IV
Xeloda & Tykerb 12/11
Allergic reaction to Tykerb 12/11
Xeloda only 12/11
Added herceptin January 2012
Progression February 2012.
Started Veliparib (parp inhibitor) trial 3/5/12.
4/30/12 Liver met shrunk in half! Praise Jesus!
6/18/12 another 25% shrinkage, down to @3x3. Thank you, God!
8/8/12 Brain MRI - clear! Praise to You, Lord Jesus Christ!
8/27/12 Thank You, God - another 20% decrease in liver met! Now @ 3.2x1.9.
10/5/12 stable-ish
11/21/12 allergic reaction to carboplatin
12/10/12 stable & progression
12/31/12 liver ablation
2/6/13 ablation successful but new tiny mets in liver. May or not be cancer.
Another ablation scheduled 2/28/13. Cancelled.
2/20/13 started taxotere & herceptin. Pretty toxic. Oncologist says start tdm1 4/3/13. From her lips to God's ears. Praying for no allergic reactions/adverse side effects.
3/28/13 increase in liver mets - number & size
4/3/13 started TDM1
6/25/13 Praise God! Scan shows only one viable lesion and it's smaller.
10/8/13 MRI shows 1 large and two small tumors.
10/11/13 Ablation of tumors. It's in God's Hands.
10/23/13 Jesus and TDM1
12/19/13 Started trial of palbociclib & herceptin after scan showed growth of liver tumor and a questionable spot on rib.
2/6/14 CT scan - previous suspicious spot on rib probably damage from radiation - Praise God! MRI - over 200% growth in cancer in liver.
2/19/14 started Navelbine, Perjeta, & Herceptin combo.
5/2-5/4/14 hospitalized with very high liver function numbers, plus skin and eyes are yellow, plus urine is orange. Feel ok, so doctor not sure if liver failing due to cancer, chemo, or infection. Hospital gets numbers to go down and sends me home. MRI done in hospital reveals cancer shrinking - praise God!
5/6/14 - 5/8/14 hospitalized with no white blood cell count. Released when they go back up, @ 6 days after doctor gave me a neulasta shot.
5/16/14 - informed blood cultures done in hospital are back and that I contracted hepatitis e. Have to take ribavirin (anti-hep med) until liver function numbers are back to "normal" before re-starting chemo. Will probably go on veliparib and temodar this time.
5/26/14 - my birthday - GI doctor informed me that the hepatitis e was completely gone - I didn't even need the anti-viral meds! This is a miracle from God!
5/28/14 - started veliparib and temodar (compassionate use)
8/18/14 MRI shows 90% growth in liver tumors
8/20/14 start Perjeta, Herceptin, & Navelbine. Thanking & giving Glory to God for each moment.
9/22/14 - 9/24/14 Hospitalized with 102.2 fever and neutropenia
11/13/14 ER for high fever and fast heart rate. Got both down with IV antibiotic and fluids. Sent home same night. Thank You, Lord!
12/2/14 MRI shows progression in liver. Grateful to God that I still feel good.
12/11/14 Simulated SIR-spheres. Successful. Real thing (1st lobe) scheduled for the 23rd. Also starting Xeloda on 22nd for 2 weeks because it's synergistic with the spheres.
12/23/14 SIR-spheres in left lobe of liver. On Xeloda 12/22/14 - 1/4/15.
1/7/15 Receiving Perjeta & Herceptin while awaiting next course of action.
2/9/15 SIR-spheres in right lobe of liver. On Xeloda for 2 weeks (started 2/8). Still on Perjeta & Herceptin. Don't know what's next for me. :-)
3/25/15 Final read on MRI report - there are new and multiple lesions in both lobes of liver. Sigh. Praise God I've made it this far!
4/1/15 Started Gemzar & Herceptin. 1st week G&H, 2nd week G only, 3rd week off. Thank You, Lord, for this option.
4/15/15 Labcorp - liver enzymes in 200's. Appointment 4/22 with oncologist to discuss. Also, "radiation recall" in previously treated area? Very itchy. Need to discuss.
4/22/15 Enzymes came down. Received reduced dose of Gemzar only. No herceptin. Will get labs at lapcorp next two weeks since taking break for vacation purposes. Treat radiation area.
5/9/15 ER for severe abdominal pain. Constipation. Sent home with meds and advice to follow up with oncologist regarding jaundice and bilirubin.
5/11/15 Hospitalized for rising bilirubin and jaundice. CT scan reveals larger and more constricting tumors in liver.
5/13/15 Met with my oncologist. Bilirubin came down. If still down by Monday, I'll get chemo. If not, than I guess I'll see you all in Heaven. Praise God. Please pray, pray, pray.
5/18/15 Bilirubin jumped up. Trying lowered dose of Ixempra, with Herceptin. Oncologist is surprised that I'm functioning so well, given the high bilirubin. I have anywhere from 2 weeks - 2 months to live.
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Old 08-22-2012, 06:56 AM   #4
Sheila
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Re: $$ For Stage IV Sisters

Stage IV diagnosis automatically makes you eligible....it's like step,to the head of the line eligible...(just another benefit of the big "c")

Also,you can earn up to $1000.00 per month and still get your SSD benefits, it is called ticket to work. it used to be 980.00 but I believe
it has been increased. You can not go over that limit or you lose your SSD benefit that month. Nice that if feeling up to it, one could still work part time. Just a FYI for those on or thinking of applying. I have been on SSD since 2003 and never had my case reviewed, which is nice....we don't need that stress!
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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 08-22-2012, 10:00 AM   #5
hutchibk
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Re: $$ For Stage IV Sisters

Yep... you have paid in. (I never wanted to take any hand-outs or anything away from seniors... until I realized I had spent a lifetime paying in exactly for this type of thing and was only receiving what had been taken out of paychecks, not a handout at all...).

As well, you ARE considered having a disibility. Disability doesn't necessarily mean you are blind or in a wheel chair. Many disabilities are not seen, like stage IV cancer. It means a disadvantage or handicap, too, which we stage IVers have.
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 08-22-2012, 10:27 AM   #6
karen z
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Re: $$ For Stage IV Sisters

Thanks very posting. Very useful information for everyone to know.
KZ
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Old 08-22-2012, 12:27 PM   #7
StephN
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Re: $$ For Stage IV Sisters

Dear Amy -

Yes, they do make it easier to start the process online, and I had to make only one trip to the office for a face to face and take them some proof of ID.

I have been on disability income since July of 2005. I had been stage IV since Jan 2002, but finally applied after my brain mets. (I did get a bit of sympathy when the interviewer heard that!) And I had my first payment into my account the very next month.

That is now over five years and like Sheila have never had a review, which I was told at the time would be every 5 years. (Who knows what will be in my mail box today?)

The amount I get is not the same as a salary, but if a person can work part time, it may be enough to keep your insurance.

You need to be aware that there is a lapse of time for getting Medicare early (if you are under the age) once you get disability. Two years in my case, and maybe that has changed I don't know.

We just had to fork out the big bucks to keep my health plan during the waiting time, during which the gov. stats probably say a person with stage IV cancer will die. New drugs = monkey wrench in that old stat!
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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.

Last edited by StephN; 08-22-2012 at 12:55 PM..
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Old 08-23-2012, 02:10 AM   #8
KsGal
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Re: $$ For Stage IV Sisters

I, too, am applying in the next few weeks. I was not aware until the last few days that i could work part time AND get disability. I thought you just got the disability amount, that was it. I couldn't have got by on what I will receive, due to the fact that for a lot of years I did not work full time. I am truly miserable at my job, and now that I know the full story about disability, I am going to quit! Im going to get something less physically demanding part time, and maybe take some college classes and have time to do the things I can't do now because I am working 11 hours a day, and exhausted the rest of the time.
__________________
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 08-23-2012, 07:46 AM   #9
Mtngrl
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Re: $$ For Stage IV Sisters

FYI, you have to not be working when you apply.

There is still a two year period between starting SSDI and qualifying for early Medicare. (In my case it'll only be six years early.) The health care was the other reason I decided to go ahead. I am a full time student and have good coverage through school, but if I get too sick to do that, I need a Plan B. And even if I graduate on schedule, there could be a problem. I won't be quite 65 by then.

I didn't know about being able to work part-time and still get the SSDI. That could work out beautifully for me. I plan to be a part-time pastor/part-time teacher after I graduate.

As for the knitting, I don't disagree with the potential for harm with the little needles and scissors. Since you're now allowed to knit on airplanes it didn't occur to me that I might be turned away. I guess the other thing I could have done is mail it to myself. If I hadn't gotten the bus station suggestion that's probably what I would have done.
__________________
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_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 08-23-2012, 11:24 AM   #10
Vicki revised
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Join Date: Mar 2012
Location: Alabama
Posts: 121
Re: $$ For Stage IV Sisters

I was told by the local office my benefits would start 5 months from the last day I worked but in fact they were retroactive to 5 months from the date of stage 4 dx. Less than 3 wks after I applied I had a direct deposit. I only had to go to the SS office once to deliver my original docs but they could have been mailed--I just wanted to know they got them. I sent all my dr notes from initial dx and the most recent.

I never had to meet with anyone or be evaluated by anyone. I sent more than they initially requested to avoid them requesting anymore docs including a voided check for the account to receive the direct deposit and my original birth cert (they returned within a week).

I retired from my state job and receive a pension check but that had no bearing on eligibility or amount of SS check and combined they equal what I brought home before I retired. Since I am only 50 and doubt I will still be around when I turn 65 or whatever age I could otherwise receive SS I am just collecting what I paid into all those years. With all my copays and other expenses related to my BC (head coverings, bras, forms, etc) we need that income.

Redwolf: I had the same work situation as you but then when I started a short honeymoon with NED, my male good old boy dept head told me I could no longer work from home despite the fact I was still recovering from surgery and on herceptin. I decided life was too short and since I became eligible to retire after 25 yrs service, I did.


PS: you can't take a cell phone that has a camera into a federal bldg and the guards won't hold it for you either so leave it in the car.
__________________
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 08-23-2012, 11:35 AM   #11
Vicki revised
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Join Date: Mar 2012
Location: Alabama
Posts: 121
Re: $$ For Stage IV Sisters

Once you are officially disabled you can withdraw funds from an IRA or 401k without paying the early withdrawal penalty ( but it is taxable). I did that on one of my IRAs that wasn't earning much and used it to pay off a car loan that was charging more in interest that the acct was making, thus eliminating a debt we were paying on each month.
__________________
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.

Last edited by Vicki revised; 08-23-2012 at 11:39 AM.. Reason: Dupe
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Old 08-23-2012, 09:04 PM   #12
dchips1
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Join Date: May 2006
Location: Mesa, Az
Posts: 219
Re: $$ For Stage IV Sisters

I applied for social security disability after my craniotomy in 1/10. I received my first check 6 months later. the amount of the check is based on your work history. I also receive an additional amount equal to half of what I receive for my son. he is the only minor in the house of our 6 kids. So I get 2 checks every month, Mine for me and an additional check for him. He can receive checks from my social security disability till he is 18 or no longer in school. Your SS amount is taxable, not the children's. You do have to fill out a report of what you spent or saved for the kid's money once per year. So if you used that to help pay the daily expenses of raising a child, that's what you put down. Medicare kicks in 24 months after you start receiving benefits.

My husband is still actively employed and carries our primary insurance. So we have no changes in doctors, or medicines. So as long as he is actively employed medicare is secondary. When he retires then medicare is primary. I am not sure about "state aide" in your state, in Arizona there are programs that help cover the "GAP" between medicare and being on the states "medicaid, welfare" etc.

My medicare (I elected part A and Part B) No drug coverage, our private company's med coverage is excellent. So after meeting the deductible of 140.00 medicare picks up 80% of the copay. So my 30.00 copay goes down to range of 0.00-6.00, depending on the type of service.

With Medicare and stage 4 cancer once through the initial request for records, no follow up appointments, records or hassle. You can still work and make some money, and still be eligible.

I also had a term life insurance policy I had had for years before being dx with cancer, you can take what is called an accelerated death benefit with being stge 4. 75% of the value and then they keep the 25% and pay your former premium. TAX FREE MONEY. We used it to pay off 2nd mortgage, and bills. So I still have enough left over to pay final expenses.(Plus I have life insurance through my husbands work )
My Goal is to outlive the 50 grand they kept to pay my 25.00 monthly premium! That equals out to about 166.67 years!!!
So there is my 2 cents on SS disability, Sometimes yes there are those that abuse or expect handouts. But then there are the real people who sometimes need to take that step to ease "financial Stress", one less thing to worry about so you can focus on your "Battle"
Love and prayers to you
Darita
__________________
dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain

1/29/14 HIHO HIHO its off to Neuro surgery I go





Life is Good when you wake up in the morning and take a breath and know that God has given me another day.


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