How Many Stage 4 Girls are getting SS disability..

sf-cakes

Thank you emac and cookie, I really appreciate hearing about your experience with this!

wengellen

Thanks for this forum, I was able to get my SDI and SSDI approved with no issues. (although many many trips were made to SDI and SSA offices) . I worked for a startup company with almost no benefits. My journey has been hectic to say the least. So I want to share it here in case it helps anyone. I was originally diagnosed stage IIA at Kaiser. I did not get the suggested treatments (surgery and chemo) but rather with alternative herbal remedies and 1.5 years later when I was visiting my families overseas, I was diagnosed with stage IV cancer (spread to neck LN). I was put on Letrozole and Kisqali right away. But by the 3rd round, my body is too weak to do my regular job as a software developer, so I stopped working (leave of absent) and then went online to SSA website and started my SSDI application. And I was going to apply for SDI online as well, but was met with two problems: one that I was not able to create a SDI account for some unknown reason and as you know, their phone line is always busy. So, I requested the paper version to be mailed to me. And then I realized that my Oncologist overseas does not know (not qualified??) to certify my SDI. So, I enrolled in an individual insurance plan in Feb. 2024 and was able to get referred to an Oncologist who is able to certify my SDI after I have shared with her my PET scan and other reports. However, she was only willing to certify for three month because she believes people with stage IV cancer should still work unless I can prove to her that I am cognitively impaired that I can no longer do my job. So, when I returned to California on 02/21, I sent in the paper version of SDI form. (I should have gone to the SDI office directly) and a letter of explanation to explain why I have filed the SDI late and why I am filing using the paper form and that I am doing my best to get all these form ready with a severe brain fog from my anti-cancer medication and my Sjogren’s disease. I shipped using next day mail but waited for 2 weeks, still have not received any letter from SDI. So, I decided to drive down to Oakland SDI office to ask them the status of my case in person. The wait was OK, about two hours. And it turned out to be some error with my address. So, they corrected that on the spot and say the case was approved, which was great, although I still have to call EDD tech support to resolve my SDI account creation issue. And after several phone calls with them, someone finally was able help resolved the issue and I was able to create my SDI account and see all the details of my claim. Then, I called my ON nurse navigator and ask if my ON can write a diagnose letter with staging information. So, I got my stage IV diagnose from her. Then, I went down to Social security office with my pathology report and the diagnose letter from her. And they were able to locate my application online. The agent asked me to sign a release of information form and ask if I have completed some adult functional form. I told her I don’t have the form completed yet and all of the test reports are still being translated and certified. And they will be mailed to me in two weeks. She told me once I received them I can put them in the drop box directly. I did not tell my ON that I am applying for SSDI. So, for the next 10 days, I log on to social security website multiple times a day to see the progress. And I don’t remember how long, but within like 10 days, my case has gone through to the final stage. I then remember that my SDI might impact my SSDI amount so I went down to SDI office again to get the “award” letter (SDI does not have one, but the guy at SDI know exactly what I need to show SSDI and printed a summary for my case) . Then I went down to SSDI after i got my SDI “award letter” and tell them that I noticed that my SSDI claim is at the final stage and here is the SDI award letter so they can adjust the SSDI amount accordingly (80% max of your base pay minus SDI amount). So, the agent at SSA made some copy of the documents told me he has approved my SSDI claim on the spot. So, my first payment from SSDI will be 7/10. With my SSDI approved, I then went back to my ON nurse navigator and tell her that I have been approved of SSDI and I really don’t think my severe brain fog (from Sjogren’s and anti cancer drug) will ever clear up and that my software developer job is really too much for me to handle now. And that I am hoping my ON can certify my SDI to be an entire year instead of just three month. To my surprise, there were no push back from the nurse at all. She told me to expect to see the updated certification from the ON in the next few days. And by the end of that same day, I got the certification letter from my ON for the entire year. So, I called KP to submit that to SDI right away. And that was 3/26. I got both the SDI and SSDI approved almost within one month. Thanks to this amazing forum and all of your help, I was able to learn from many of you. And to know that there are many treatment options and opinion out. And more importantly, that I don’t take no for answer and just keep fighting what I think is right. And by the way, I am 50 years old. So, maybe it’s easier to get SSDI approved. And I am also on Medi-cal, so the meds should be covered as well. (not 100% sure yet. just started in April 1).

Thanks and hugs to all.

seeq

SF-Cakes, I applied during the pandemic, so it was all online - with very helpful phone support from the local office. After the local office processed their part, it went for higher level medical review and I had to supply medical documentation, including imaging to them. Once they had that, it breezed through.

cookie54

Hey all, Was wondering if anyone has any tips regarding Xeloda and pricing with Medicare. I am currently on Cobra and SSDi due to Stage IV status which makes me eligible for Medicare on 7/1. I will be talking with my local SHIP office to help with Medicare but figured I would ask for any inside info. Open to any advice when picking drug plans etc.Thanks.

kbl

@cookie54 I am on a Medicare Advantage plan, and when I was on Xeloda, it was covered under Part B because it’s a chemo pill. I paid roughly $15 per month.