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Thread: ependymoma and disability

  1. #1

    ependymoma and disability

    My boyfriend has just been diagnosed with a stage III ependymoma. He had most if it removed (as much as they could) on the 28th of January. He is doing well now, he is only experiencing some minor aphasia. (Sometimes he can't spit out what he wants to say). I am trying to understand this whole thing a little better, but it's hard to sort everything out. We wont know his course of treatment until next week but chemo and radiation have been mentioned. He seems to think that he will be able to go back to work, but I think he may be wrong. I think treatment may be harder than he anticipates. He is 23 (at the end of the month) and recovery does look good as far as I can tell. I am not sure if he is eligible for any assitance. (SSI, SSDI, or State Disability (MI)) Does any one have any experince with this sort of tumor and applying for disability?

  2. #2
    I am going through the disability process with my husband right now. Did his doctor say that he would be able to return to work safely? If the answer is No, meaning that the doctor said he can't work then I suggest you get on the internet and look into SSI (this can be applied for if he may be able to return to work later down the road) or Social Security Disability, if he will never be able to return to any type of work. They have a set standard that they go by and it should list it on the website. {Link deleted per forum policy} It is pretty easy to do just time consuming. I hope your boyfriend is doing better. Good luck to the both of you!
    Last edited by brainman; 03-01-2011 at 03:36 AM.

  3. #3
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    In cases of disability confirmed by your doctor, you should also check your state website (if in the US, I don't know about other places) for additional resources. NYS, for example, has numerous programs available through their agencies most of which are administered by local counties. Benefits vary from state to state but are sometimes easier to qualify for than federal disability.

    Good health,

    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 67
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
    Significant progression detected in PET scan - December 2012
    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
    June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
    February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
    June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
    August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
    December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
    March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
    June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
    August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
    January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
    April 2017 - Mid treatment scan shows about 1/3 reduction in multiple tumors. Also shows abdominal aortic aneurysm with peripheral thrombus. Cardiologist changed meds, spoke of need for surgical repair down the road.
    September 2017 - finished 10 rounds of R-CP, V was stopped due to neuropathy in feet. No further treatment planned at this time, at least 10 tumors can be felt which seem to be growing again.
    December 2017 - Biopsy of external iliac node with SUV of 13.1 shows no transformation! However, the FL grade is now 3A instead of Gr 1-2. Will start indefinite protocol using Copanlisib, one of the new targeted therapies. I remain hopeful.
    March 2018 - Copanlisib failed, treatment stopped 3/28. New plan is to go to Dana Farber on 4/16 for case review and treatment recommendation.

    May 2018 - did not qualify for clinical trials at Dana Farber. Tumors need to get larger to be considered. On consultation w/Dr. Armand at DF and my onc, have decided to take a break from cancer treatments. Will have a biopsy of the mass in my sinus discovered in scan at DF and to get the aneurysm repaired as it has developed a potentially catastrophic penetrating ulcer. Surgery scheduled for 7/12.

    September 2018 - biopsy of mass in nose shows transformed DLBCL throughout. Assessing options for this negative development.

    October 2018 - started 6 to 8 cycles of R-CHOP. Goal is to get to full remission to open up other options.

    February/March 2019 - PET shows four hot spots following R-CHOP. referred to Dana Farber for stem cell transplant. Pre testing all good, accepted for Auto Transplant. Will begin inpatient process about April 1.


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