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Thread: Dealing with cancer and finacial issues when alone

  1. #1
    Newbie New User
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    Feb 2013
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    2

    Dealing with cancer and finacial issues when alone

    I was just diagnosed by cancer and I'm living alone, I don't have any family or good friends.

    After a lymph node biopsy the doctors just know that it's in the digestive track, but it痴 probably esophagus. I値l have a gastroscopy next week where they値l find the tumor exactly. I also have liver metastases.

    That sounds that I値l be unable to take care of myself very soon.

    My current fear is about health insurance.
    As I understand it I can apply for COBRA and keep my current insurance for 18 month.

    But what if I can't apply for COBRA because I'm sick in the hospital?
    Would someone in the hospital take care of such issues?
    Are there legal guardians or social workers who would help?

    Whom should I ask?

    Thanks for your help!

  2. #2
    Administrator Top User Kermica's Avatar
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    Jul 2009
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    6,570
    Hi Knirscher and welcome to the place no one wants to be but many come to value. I think the first thing you need to do is slow down a half step. When we are first diagnosed, it seems as if the whole world is crashng in on us and it is very hard to see beyond all of the "what if" questions that pour into our minds.

    You should have a frank and honest discussion with your care team about exactly what your prognosis is for what you are facing. There is no reason to automatically assume that you are terminal or that you will be unable to make decisions for yourself over the coming weeks and months. Get the facts so that you can plan factually. Regarding health insurance - why can't you stay on your employers plan for now? If you are considered disabled, most US based insurance plans will allow for company benefits to continue for at least one year. I think you need to sit down with the Patient Advocate at your oncologists office to discuss these matters. You should also consider reviewing your situation with your companies' HR Department, especially if they are considered an employee friendly workplace.

    You should be able to take care of these planning elements way before you need a Health Proxy to assist you. Speaking of that, you should also consider putting a Health Proxy into place, possibly along with a Living Will. Neither move means anythingng is going to go bad, rather, it means that if things do go bad your care will proceed according to your wishes regardiless of your ability to direct things at that point. Here is the link to the Health Proxy entry at Wikipedia. It will provide good background but each state has its own rules so you should consider doing a search at the Texax Department of Health or other resource.

    Good health,

    kermica
    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.

  3. #3
    Newbie New User
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    Feb 2013
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    Thanks Kermica for the encouraging reply.
    Right now I can’t think about anything else than the uncertainty and trying to prepare to ask the right questions when at the Oncologist.
    Right now I can’t imagine how anything could possibly work out and how I should be able to organize anything while doing an esophageal cancer chemo.
    So there’ll be a Patient Advocate at the oncologists helping with such issues?
    I agree that I finally have to talk to HR and my Manager. Maybe they can help, maybe not.
    I did not fully understand the Health Proxy concept. It does not really sound like something helping managing financial issues while I’m unable to take care of myself.

  4. #4
    Newbie Regular User NMgal's Avatar
    Join Date
    Apr 2013
    Posts
    11
    There are people in the hospital who do just that - navigating the financial issues for you. They also have funds set aside to help people with their expenses. They were such a huge help to me. Good luck!
    3.25.13: breast cancer stage4, met to lymph nodes and spine
    CT Scan, hospitalized. Several ultrasounds.
    3.26.13: Paracentesis, 5 liters fluid removed
    Suspected ovarian cancer as a second primary
    C125 test confirms ovarian
    4.12.13: PET scan
    4.10.13: Gyn oncologist appt

 

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