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How Many Stage 4 Girls are getting SS disability..

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  • spicedlife
    spicedlife Member Posts: 79
    edited October 2019
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    30 minutes ago spicedlife wrote:

    Hi ngeryone,

    I read a few pages back and it doesn't appear that any of you are having the particular side effect I'm experiencing on Faslodex and Verzenio. I know it sounds crazy ( it feels crazy!) but on the AI's I cry. So bad that I am no longer working. I spent as much time in the bathroom trying to stop crying as I did working. It was very humiliating. Also, I couldn't do my job like I used to. I forgot simple things, I could not multi-task, I forgot my words and I could no longer explain something to a customer that was so basic it was ridiculous. I work in banking and one day I couldn't remember the word "transaction".

    Am I the only one that has had the emotional and the slowed mental (like chemo brain) side effects?

    By the way, emotional regulation is one side effect listed on Faslodex I think. I was diagnosed with mets to the bones in November 2017 and have been on the same treatment the whole time. I haven't worked since December 2018. I wasn't able to get back to work and am now on LTD and in the process of applying for SSDI. I've been in banking for over 25 years. My co-workers in the call center were some of the best people I've ever worked with and my job was my "happy place"

    I hate it that it came down to quitting treatment or my job. I stopped taking letrazole 3 years after starting due to crying. Not like the crying I was having recently but it was either quit it or quit my job. I chose to keep my job. I'd do the same thing again if I had it to do over. Now with mets, I can't quit treatment.

    I take meds for depression and anxiety but have done so for nearly 20 years and I was still able to do a great job at work. I hope I am not coming across as a whiner but I can't believe I am the only one that does so bad emotionally and with such brain fog on Faslodex.

    Thanks for being here and listening.

    Jenny

  • candy-678
    candy-678 Member Posts: 4,098
    edited October 2019
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    Spiced Life- I was just accepted for Social Security Disability. It took 9 business days from the start of the process to get the acceptance. I was told with the MBC diagnosis it was an automatic approval. I did not need to tell them about my other health problems. I did not need to tell them why I could no longer do my job. Do you have any assistance thru your employer?? My employer had a subcontractor that helps the employees with the Social Security Disability process. I see you are on LTD with your employer. Just tell the Social Security Office personnel that you have MBC. They will need to get your medical records showing the bone mets. It does not matter that you are stable on first line therapy--so am I. And who cares what your onc thinks. You are the patient. You have the right to stop working and get SSD.

    Edited to say--- I am sorry you are going thru all the depression and crying issues. I have not been on Faslodex yet. Maybe you need to change your depression meds. You should not have to live that way, weather you are working or not. Quality of life is important. And you sound miserable.

  • spicedlife
    spicedlife Member Posts: 79
    edited October 2019
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    Thanks Candy,

    I am not crying since leaving work praise the Lord! All of .my physical side effects are much better too. I miss my job but I do feel much better mentally and physically. I hate stupid cancer.

  • spicedlife
    spicedlife Member Posts: 79
    edited October 2019
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    How many of you applied for SSD when your last scan showed NED?

    Thanks......Jenny

  • candy-678
    candy-678 Member Posts: 4,098
    edited October 2019
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    spicedlife- My scans have never showed "NED". My MO states "stable" when discussing my scan results. And I am on the same meds- Ibrance, Letrozole, Lupron, Xgeva-- since diagnosis. No med changes yet. I was told by ladies here-- reread some posts, I have posted A LOT here about my concerns before I applied-- that status of the cancer doesn't matter. As long as you are MBC, Stage 4 then you qualify for SSD. Please others chime in and help spicedlife with her questions.

  • divinemrsm
    divinemrsm Member Posts: 6,075
    edited October 2019
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    Spicedlife, I was actually ned or stable on my scans for at least four years before I applied for SSDI and still got approved quickly.


  • spicedlife
    spicedlife Member Posts: 79
    edited October 2019
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    DivineMrsM, thank you for answering so quickly! I think I will quit worrying for tonight. :) I have another scan this Thursday and I hope it stays NED thou I do have a new area of bone pain on my rib. We will see.

    Jenny

  • Momchichi
    Momchichi Member Posts: 98
    edited October 2019
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    Jenny,

    I used to work for SSA and all they need is your pathology report showing Mets. Don’t fret, they have a specialized program to expedite such claims so it’s not the usual government slowness. I know it seems like a big step and huge process but you’ll be seen to quickly. Best wishes!

  • elderberry
    elderberry Member Posts: 1,064
    edited October 2019
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    Spicedlife: I am grateful I got my DX after I retired. As for chemo brain - I put a post-it on my PC with "write, save draft, reread, send" because if I just wrote something and sent it off it as often so full of typos, repeated sentences and some incoherent stuff I am sure my relatives and friends wondered what was going on with my brain. Things did settle and now I am off Taxol my chemo brain fog is lifting. I hope you get your SSD approved quickly and you can find something to help with the crying. Be well!

  • Kjones13
    Kjones13 Member Posts: 662
    edited October 2019
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    so...I got a letter in the mail last week from social security stating that I am no longer disabled...I about feel over...I had treatment on Friday and wanted to speak to the lady who handles disability at my cancer center, but she is out of the office until Wednesday. While looking over the letter again, I noticed that only my general physician and the psychiatric facility were listed as places that gave information for my review. My cancer center was not listed...do you think this is the reason why I am now considered not disabled? Nothing has changed...literally nothing has changed in the time I have been disabled (since 11/12)

  • candy-678
    candy-678 Member Posts: 4,098
    edited October 2019
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    KJones- I am no expert. But your profile states you are Stage 4, right?? If so, and you are still receiving treatment and seeing MO regularly, I wouldn't think Social Security has the right to state you are no longer disabled. Talk to the person at the cancer center when she returns on Wednesday. Maybe all that is needed is documentation from that office that you are indeed still active in treatment. 7 years into this --- wow. Where is your mets? Still first line therapy? Wow again. Good for you.

  • Momchichi
    Momchichi Member Posts: 98
    edited October 2019
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    kjones,

    I used to work for SSA and you won’t be ceased without an appeal period so do not fret. Fax a letter from your oncologist confirming stage 4 and the date diagnosed and maybe even copy of path report if you can’t get letter from dr.

  • mirryp
    mirryp Member Posts: 15
    edited October 2019
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    kjones. Any chance, you are just being switched from disability to regular social security due to age? Otherwise, make sure you appeal, benefits can not be stopped during appeal period. NED or stable do not even matter. Metastatic diagnosis qualifies for permanent disability status until reach normal retirement age. The language in regulations says diagnosis confirmed by a medical professional. It doesn't have to be your oncologist. Your regular doctor, or even whatever dr. reads the scans qualify if cancer center doesn't follow through.I am so sorry that this happened.

  • laureninphx
    laureninphx Member Posts: 138
    edited October 2019
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    So I applied online today but was unable to open a My SSA account to track the progress because of a fraud alert due to someone trying to steal my identity earlier this year. I *think* I did everything correctly, although I have no idea. I sent an email to my onc to get the PET scan report to go with my path report to send in as evidence, then promptly forgot and sent it off without it. *sigh*. 

    I have been trying to start or restart my online marketing business for the last five months or so and was thisclose to launching when I got the diagnosis. So I'd really like to get it up and running so a) I have something to do besides sitting around waiting to die and b) I need the extra money. I will jump off that bridge when I get there, gotta see if it's successful first, but I'm going to try. If I make more than $1200 a month, then what happens to Medicare? Can I still get it after two years? Seems unlikely. That's really the only reason I'm getting the disability is for the Medicare. 

    I have been living off an inheritance for the last five years which won't last much longer, so I'm kinda in this really weird situation. I haven't worked in weeks because I've been so distracted, but I'd like to get back to it once things settle down. I've been working with no pay because I'm trying to get a business up and running while closing up my other business (which wasn't doing anything) so I'm in a weird limbo - not to mention I have no idea what my earnings might be for 2020 or 2019 if I launch like I'm supposed to this year.

    Who should I sit down and talk to? A disability lawyer? A tax accountant? Please don't say the SSA office, haha. It's an hour away and I imagine a nightmare wait time. 

    Thanks for any input or just nodding your head in solidarity. ;)


    Lauren


  • olma61
    olma61 Member Posts: 1,022
    edited October 2019
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    Lauren - If you are not 65 yet, you won't have Medicare for 2 years from the date your SSDI begins. If you don't have other insurance, you can apply for coverage through the ACA exchanges and maybe get a subsidy or expanded Medicaid.

  • Kjones13
    Kjones13 Member Posts: 662
    edited October 2019
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    candy-678–yes I am stage 4 de novo. Mets were in my liver and spine. Had a complete response and Still on my first line of treatment. It’s very remarkable! And I feel extremely blessed to be in the minority.

    I went to SSA and filled out forms for continued checks and insurance. I had the lady check and my onc office did send in 52 pages worth of info in for this determination...so I am at a loss as to why this is happening. I am 41. Was 34 at the time of dx.

    I did find a lawyer who is taking on my case pro bono...which is incredible!

    I had scans yesterday. The longest I have ever gone between scans—1 year. I’m nervous to say the least. I feel like I have slipped through the cracks with my doctor. I went 2 years without seeing him. And he didn’t even realize when it was my 5 year mark...he is a surgical oncologist and I think he wants me to see someone else while I am in this maintenance mode? I’m not sure. I don’t feel confident in the information he sent in about me when he has only seen me twice in the last 3 years...ugh

    I do see a mid level every 6 weeks...so I do have a LPN and several PA’s that I really like and have a good report with. I’ll let you guy’s know any updates I get

  • sondraf
    sondraf Member Posts: 1,600
    edited October 2019
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    I need to get this paperwork going as I am applying from overseas. However, since we are at the very start of this event, I don't want to try to move back to the US until I am somewhat stable and have some time to rearrange a move home and re-enter the US medical system. Can I apply and be confirmed but NOT start payments until a future date? And to cover medical its either medical exchanges or for partner to get a job with an outrageous insurance copay right (im 42)?

  • vlnrph
    vlnrph Member Posts: 490
    edited October 2019
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    Sondra, there is a five month waiting period retroactive to your disability date. I don't think there is an option to file and start collecting much later than that window. Most of us want/need the cash as soon as possible...

    If you have been abroad, are you paying into the system? You need, essentially, 5 years of employment credits in the previous decade to qualify. There is actually little real 'paper' work - it's almost all done on line, very quickly.

    Depending on the health insurance plan provided by the employer, your copay and deductibles could be less than outrageous. If they are on the high side, your SSD income can help cover them!

  • sondraf
    sondraf Member Posts: 1,600
    edited October 2019
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    The US and UK have a reciprocal agreement regarding SS, so while I have five years working here and paying into the system, I am still in the window of having had five years working in the US as well in the last ten. I should call the embassy line and find out for certain whats up. Good to know about the five month requirement - we won't move that quickly but the more information the better.

  • spicedlife
    spicedlife Member Posts: 79
    edited October 2019
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    Well, I'm freaking out. I was told today by my lawyer group that I do indeed have to fill out the work and function reports because there was a reported change in my condition? She was very interested in me putting how long I can stand and sit can I handle my bank account etc. That's not the problem, my mind just can't do it anymore. I am Ned on first line treatment but I definitely still in treatment.

    Thanks for letting me vent. Actually I'm so anxious and crying and I know I can't go back to work I just know it.

  • candy-678
    candy-678 Member Posts: 4,098
    edited October 2019
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    Spiced- I don't understand why you are having to fill out function reports. I do not claim to be an expert on SSD. But you should just show path report stating Stage 4 MBC and that you are undergoing active treatment. Your profile states Mets to bone in 2017. How about PET scan report with statement about metastatic breast cancer to bone. Or a bone biopsy. Something stating the bone mets is the breast cancer going to bone---Stage 4 MBC. Are you on any other meds but Femara? Xgeva for bone mets or targeted therapy? Hope you get this resolved soon. Keep us informed.

  • snooky1954
    snooky1954 Member Posts: 850
    edited October 2019
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    Spice, are you seeing a counselor? Taking anti-depressants or any meds of that sort? Sounds to me like you are having PTSS. Or, are in a depressive state. If you can get a psychiatrist to document this for you, it would help tremendously. Depression is the No 1 reason for getting disability. Of course your nerves are fragile. And you are clearly having anxiety issues. I would think trying all of that into cancer would be easy. But TALK to a counselor tell them how your crying and shaking and thoughts you are having....they can help you.

    Find out who put in the report and question the medical documentation of it.

    I am so sorry you are having these issues. But please do something about your stress levels, if you don't they might get worse.


    Sorry, I didn't read your whole story about the doctor sending in papers. Well, I would ask him why he thinks you can work in your emotional state. And why HE an ONC would indicate that MBC has been cured. (OF course, I truly wish for you that this IS the case)

    I would insist that he comes right out and tell you that you are "cured". Of couse, he cannot say that. Then I would ask him what the heck the deal is? Is it possible that office staff sent in these papers without him even knowing it? It's quit possible he'll help you straighten this out.

  • spicedlife
    spicedlife Member Posts: 79
    edited March 2020
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    I'm sorry ladies, I'm just now back on bco after an extended break. My mom was in the hospital for over 3 months. Anyway, I started SSDI in February. I've been seeing a wonderful counselor since 2017. I don't know what I'd do without her! BTW, I got approved based on the Neurologist recommendation. My cognitive ability needed to do my job is just gone. Chemo brain was the breaking point. It's just crazy.

  • vlnrph
    vlnrph Member Posts: 490
    edited March 2020
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    Welcome back Spice Girl! Congrats on starting SSDI. Hope you mom pulled thru and is home now. I have often said the hospital can be the worst place for a sick person..

  • spicedlife
    spicedlife Member Posts: 79
    edited March 2020
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    Lol. I swear, it's the truth!

  • vlnrph
    vlnrph Member Posts: 490
    edited April 2020
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    Bumping this topic for gals in the bone mets thread...

  • kbl
    kbl Member Posts: 2,731
    edited May 2020
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    I haven’t read all posts, so please forgive me if this question has been asked. I am self-employed and work part-time to full-time, depending on how I’m feeling. I am at the point where I think I’m going to apply for SSDI. I was diagnosed Stage IV de novo in May of 2019. Do I have to totally stop working before I even apply or can I work until I get approved? Just trying to get my ducks in a row. Thank you.

  • FloridaRachel
    FloridaRachel Member Posts: 3
    edited May 2020
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    KBL, I recently got approved for SSDI and I work part time. The site isn't letting me post a link, but if you google "SSA Working While Disabled," you should be able to access SSA Publication No. 05-10095. It explains in more detail, but you can continue to work on SSDI.

    As I understand it, if your income goes above a certain level, your SSDI benefits would be cut. I am also self-employed and do bookkeeping part time and was able to continue helping my existing clients and still receive my full SSDI payment. After I filled out the online application, I had to fill out one more form, where I had to list my net income by month for the past couple of years. So be prepared with that info. This was just before COVID-19, and I went into the SSA office and filled out the form in person. But hopefully now there is a way to fill it out online too.

    The process for me took about a month from when I first filled out the application to when I got money deposited in my account. This was right as the office was being closed down for COVID-19. I think they usually work even faster than that for our diagnosis.

    And looking at your profile, if you were diagnosed as stage IV in 5/19, you may be eligible for retroactive payments. When I was approved, I got a year's worth of payments at one time. Good luck with your application! The money really has been a blessing for my family.


  • kbl
    kbl Member Posts: 2,731
    edited May 2020
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    Hi, FloridaRachel. Thank you for the publication. This publication talks about working while you're on disability. Did you continue working even when you were applying? Also, I read where we have to apply and then wait five months before receiving any money, but you said you got your payment and it only took a month? I'm sure I've made too much money for any back pay. I'm actually going to take a substantial cut in pay by going in SSDI, even working part time. I appreciate you replying.

  • vlnrph
    vlnrph Member Posts: 490
    edited June 2020
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    There is a five month waiting period but they will use your metastatic diagnosis date and count from that point.

    So, some gals qualify for retroactive payments as FL Rachel mentions. You do need sufficient work credits within a certain time frame which KBL sounds like she has.

    You will get the amount that would be received at full retirement age.