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oceanswimmer's Recent CancerCompass Activity

  • oceanswimmer has replied to a post on the message board

    Hi Allie, I think you have every right to be angry.  You are grieving, and your friends should understand that, acknowledge it, and join you in it or at least be present with you in your grief.  You also have a lot of processing to do, to move forward in grief.  You went through a lot with your husband, and now he is gone, and that has such a tremendous and all-consuming impact, and leaves you with com...

    February 08, 2015 view post
    • oceanswimmer has replied to a post on the message board

      You should check the PPO plan coverage terms for the annual maximum out of pocket.  You may only pay 40% up to a certain amount; if you reach max, then plan should pay at 100% for remainder of year.  Remember that on a PPO, all claims are itemized and billed separately, so you will have facility charges, surgeon charges, assistant surgeon, anesthesiologist, lab work, etc.  But whatever you pay sh...

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      • oceanswimmer has replied to a post on the message board

        I'd ask to see the scans and have them explained to me.  Ask what it is they see that makes it appear to be new tumor, or makes it appear to be treatment related.  I'd also ask the NO at Mayo to talk to the NO at Northwestern.  And I'd seek another opinion.  And then trust your instincts as much as possible, or trust the doctor you trust the most.  Is your mom having increased symptoms? ...

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        • oceanswimmer has replied to a post on the message board

          One of the problems with off-label use, from a practical standpoint, is that insurance might not cover the drug for the off-label use.  So, a doctor might not prescribe something knowing that it won't meet the insurance company's criteria for coverage of the drug. If the drug has a prior auth requirement with the insurance co., the physician will have to submit a form indicating what the drug is being used for.&...

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          • oceanswimmer has replied to a post on the message board

            Every state has its own Medicaid program.  It is a federal gov't program administered at the state level, and it can have different names in different states (e.g. Medi-Cal in CA).  The requirements to qualify and benefits may differ between states; there is a certain floor or base to eligibility and benefits, and the states can be more generous (expanding eligibility and benefits beyond...

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            • oceanswimmer has replied to a post on the message board

              Medicare does have a dollar limit on what it will pay for outpatient physical therapy.  I think it is $1900 (for PT and speech therapy combined, and another $1900 for OT).  A provider can get approval from Medicare to exceed the limit if therapy is still needed and cap is reached, but then the continuing therapy needs to be preauthorized by Medicare.  If your husband has a secondary or medicare s...

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              • oceanswimmer has replied to a post on the message board

                My son had stereotactic radiation after 3rd resection, but I don't think it did any good in his case. I don't think it did any harm, either.  He didn't have any side effects except a little more hair loss where the hair was already very thin from radiation in the past.  (It was hard to tell if it left him more tired, as he had just had a third resection, and surgeries # 2 and 3 were just two months apart.)&...

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                • oceanswimmer has replied to a post on the message board

                  KPANDBP is right, it is usually because of the insurance co. The insurance co. will have medical guidelines with criteria that must be met for continued coverage of physical therapy. You should ask your husband's plan for a copy of the guidelines, so you know what the criteria is (might be on plan website, in provider area), and appeal the decision if your husband is told that PT can no longer be cover...

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                  • oceanswimmer has replied to a post on the message board

                    Hi Sara, My son was 18 when diagnosed with GBM in Nov. 2008.  He had standard treatment (surgery, radiation, temodar).  He was only on temodar for 8 months because his body wasn't handling it well.  He was stable when we took him off temodar, no tumor progression, and that lasted until late June of this year. He had second resection in late June, was put back on temodar (low daily dose rather than hig...

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                    • oceanswimmer has replied to a post on the message board

                      Hi.  Its been a long time since I've posted here, so I'll give a quick recap and update. My son was diagnosed with GBM in Nov. 2008, at age 18.  He had standard treatment, 90-95% resection followed by radiation and temodar.  He was on temodar for about a year, with delays between cycles because his blood counts were not holding up. (He also has neurofibromatosis and had previous treatment with temodar ...

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                      About oceanswimmer

                      Caregiver
                      Brain Cancer

                      Son (1990-2013) had GBM, NF-1, and developmental disabilities.

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