It's been a couple weeks since Dad's bone-marrow biopsy sample was collected (http://www.early-retirement.org/forums/f38/multiple-myeloma-questions-58350.html), and I hadn't heard anything out here. My brother's accompanied him to all his appointments but hadn't heard anything either.
Today I got the typical call from Dad's care facility: "The doctor wants to prescribe an expensive medication, and we can't find the account number of your Dad's prescription plan, and they want to start chemotherapy in a couple days. Do you have the number?"
Yes, I had the number, and was there any other news they'd care to share with me? Like why someone's planning to start chemotherapy?
And the expected response: No, we're sorry, nobody knows nothin' here and you'll have to talk to the doctor. Thanks for the account number, bye!
My brother was just about to call me after leaving the doctor's office, and we eventually sorted it all out, but the next few paragraphs are more cut&paste than comprehension.
The diagnosis is not multiple myeloma. It's "low-grade lymphoma, possibly Waldenström's macroglobulinemia". Waldenström's macroglobulinemia - Wikipedia, the free encyclopedia , Waldenström Macroglobulinemia: Q & A - National Cancer Institute It's considered rare, although that may be because they're still getting better at diagnosing it. In short, Dad's bone marrow is making too many white blood cells, which is reducing the production of red blood cells, so he's anemic. The bone marrow is also producing too much immunoglobulin, making the blood very viscous and leading to a number of other complications. The oncologist seems pretty confident in the diagnosis. Apparently the biopsy shows exactly what types of cells are present and what condition they're in.
Since Dad's nearly 78 years old, treatment is 6-9 chemotherapy infusions (three weeks apart) with cyclophosphamide & rituximab. Layman's translation: carefully-calculated poisons. On the day of the infusion Dad will also take an aprepitant anti-nausea capsule (Emend), followed by one more capsule on each of the following two days. After the third day the chemotherapy drugs are less concentrated and his body is supposed to tolerate them without the nausea meds.
I'm still learning all the Medicare financial rules, but perhaps "chemotherapy" is a treatment so those medication expenses are covered under Part B (plus Dad's Medicare supplemental insurance). However aprepitant is a prescription medication, so that's Part D, and the pharmacy wasn't going to dispense it until someone made a down payment. Dad is one of America's few remaining retirees to have a prescription benefit in his pension. Judging from Medco's rates, aprepitant must be a whopper of a med... his 30-day prescription for 10mg blood-pressure pills (lisinopril) has a copay of $4. A packet of three aprepitant pills carries a copay of $180.
My brother says that the oncologist projects a strong aura of credibility, so Dad readily agreed to the treatment. (As much as a patient in mid-stage Alzheimer's can give informed consent.) My brother also agrees with the oncologist's plan, so they're pushing ahead. Dad's been sleeping a lot and he's in some pain from the other symptoms, so he sees this as a way to "feel better". We'll see how he feels about that after the first infusion... he tolerates pain pretty well but he has a very strong aversion to being a lab rat.
I appreciate everyone's e-mails and PMs on multiple myeloma, and you all helped me get up on the step. Waldenström's is something that I've only read about on a few websites so far. And again, it seems very difficult to find any info about the survival rates of lymphoma patients who also have Alzheimer's.
Any other chemotherapy issues or side effects to watch out for? Do any of you have any personal or family experience to report? Anything you wish you'd known up front or that you'd do differently?
Today our lawyer's paralegal also told my brother that the guardianship & conservatorship petitions have been filed. They're waiting to hear the date and whether my presence is required at the hearing. (Turns out the lawyer didn't know the answer to that question after all.) We've been pushing this since roughly 11 March.
Today I got the typical call from Dad's care facility: "The doctor wants to prescribe an expensive medication, and we can't find the account number of your Dad's prescription plan, and they want to start chemotherapy in a couple days. Do you have the number?"
Yes, I had the number, and was there any other news they'd care to share with me? Like why someone's planning to start chemotherapy?
And the expected response: No, we're sorry, nobody knows nothin' here and you'll have to talk to the doctor. Thanks for the account number, bye!
My brother was just about to call me after leaving the doctor's office, and we eventually sorted it all out, but the next few paragraphs are more cut&paste than comprehension.
The diagnosis is not multiple myeloma. It's "low-grade lymphoma, possibly Waldenström's macroglobulinemia". Waldenström's macroglobulinemia - Wikipedia, the free encyclopedia , Waldenström Macroglobulinemia: Q & A - National Cancer Institute It's considered rare, although that may be because they're still getting better at diagnosing it. In short, Dad's bone marrow is making too many white blood cells, which is reducing the production of red blood cells, so he's anemic. The bone marrow is also producing too much immunoglobulin, making the blood very viscous and leading to a number of other complications. The oncologist seems pretty confident in the diagnosis. Apparently the biopsy shows exactly what types of cells are present and what condition they're in.
Since Dad's nearly 78 years old, treatment is 6-9 chemotherapy infusions (three weeks apart) with cyclophosphamide & rituximab. Layman's translation: carefully-calculated poisons. On the day of the infusion Dad will also take an aprepitant anti-nausea capsule (Emend), followed by one more capsule on each of the following two days. After the third day the chemotherapy drugs are less concentrated and his body is supposed to tolerate them without the nausea meds.
I'm still learning all the Medicare financial rules, but perhaps "chemotherapy" is a treatment so those medication expenses are covered under Part B (plus Dad's Medicare supplemental insurance). However aprepitant is a prescription medication, so that's Part D, and the pharmacy wasn't going to dispense it until someone made a down payment. Dad is one of America's few remaining retirees to have a prescription benefit in his pension. Judging from Medco's rates, aprepitant must be a whopper of a med... his 30-day prescription for 10mg blood-pressure pills (lisinopril) has a copay of $4. A packet of three aprepitant pills carries a copay of $180.
My brother says that the oncologist projects a strong aura of credibility, so Dad readily agreed to the treatment. (As much as a patient in mid-stage Alzheimer's can give informed consent.) My brother also agrees with the oncologist's plan, so they're pushing ahead. Dad's been sleeping a lot and he's in some pain from the other symptoms, so he sees this as a way to "feel better". We'll see how he feels about that after the first infusion... he tolerates pain pretty well but he has a very strong aversion to being a lab rat.
I appreciate everyone's e-mails and PMs on multiple myeloma, and you all helped me get up on the step. Waldenström's is something that I've only read about on a few websites so far. And again, it seems very difficult to find any info about the survival rates of lymphoma patients who also have Alzheimer's.
Any other chemotherapy issues or side effects to watch out for? Do any of you have any personal or family experience to report? Anything you wish you'd known up front or that you'd do differently?
Today our lawyer's paralegal also told my brother that the guardianship & conservatorship petitions have been filed. They're waiting to hear the date and whether my presence is required at the hearing. (Turns out the lawyer didn't know the answer to that question after all.) We've been pushing this since roughly 11 March.
