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Questions on my Dad's diagnosis of "Waldenström's macroglobulinemia"
Old 11-05-2011, 11:25 AM   #1
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Questions on my Dad's diagnosis of "Waldenström's macroglobulinemia"

It's been a couple weeks since Dad's bone-marrow biopsy sample was collected (Multiple myeloma questions), 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.
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Old 11-05-2011, 12:11 PM   #2
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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/
I'm sorry for you dad, your family, and you, Nords.

I have seen only a few cases, all with myeloma. Chemo may prove challenging but hopefully he will weather the storm and buy some decent quality time; sounds like he may have chronic lymphocytic lymphoma with WM.

Chemo symptoms include the usual nausea, vomiting, hair loss, bladder irritation, low platelets, white and red counts with increased infection and bleeding risk. Rituxan can cause some mighty impressive fever and severe chills but that often resolves quickly. These general findings are what come to mind, but his specific reactions will depend on his other illnesses, state of debility, etc.

You know the drill as per my signature line but this is particularly a disease where you'll need to rely on his doctor for information. The web is waayyyy too noisy.

One day at a time, my friend.

Warm best wishes.
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Old 11-06-2011, 11:16 AM   #3
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Thanks, Rich. I was afraid of this.

A few years ago, learning about these side effects would've made Dad opt for palliative hospice and a few more visits to his favorite hiking trails. I don't know if he can make these decisions with Alzheimer's. Every time they get in the car he asks "Now where are we going? Why are we doing this?"

I don't know how my brother will feel about "staying the course" after seeing the effects of a couple chemo sessions. Not much data and too few experts in this area. I'm just trying to get a handle on the next step. I want to be able to supply enough info to make a decision, and to support whatever decision gets made.

Six months ago I thought Alzheimer's was the biggest problem in Dad's life. These days it's practically an afterthought.
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Old 11-06-2011, 11:25 AM   #4
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The 5 minute consult online, epocrates or emedicine do have good specific information. I would not rely on anything else except CDC or NIH information for more generic data.

Nords : take care.
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The web is waayyyy too noisy.
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Old 11-06-2011, 12:08 PM   #5
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Thanks, Rich. I was afraid of this.
Just to be clear, not every treated patient gets all these side-effects, and some get none of them. Maybe his hematologist can help sort out what the likelihoods are since he/she knows Dad's details.
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Old 11-06-2011, 04:12 PM   #6
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So sorry to hear about your dad Nords. DW did the IV chemo for breast cancer in 2008-2009 period, and she stopped taking oral version this Spring. She is over 20 years younger than your dad, and it was rough. The chemicals really messed with her body temperature controls, fingers and toes, hair loss all over her head and face, and even her ability to recall the correct word. The word memory thing persists some, but the other things have greatly improved. Oddly enough, other chronic physical conditions she had before chemo improved for awhile.

It sounds like you don't live as near your dad as your brother(s). I needed to stay with DW through all her treatments, and then tended to her needs afterwards. It's rough watching someone you love suffer, even for a short period, but many have gotten through it. I know Rich is a doctor, and the internet surely adds to his back ground noise professionally, but do your own research. NIH sites were very useful when decisions needed to be made, but it takes a lot of research. And the doc's will cringe with this, but DW also found well done blogs very useful in assessing her relative position in the whole world of cancer care and decision-making around the process. Courage.
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Old 11-07-2011, 01:49 AM   #7
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The 5 minute consult online, epocrates or emedicine do have good specific information. I would not rely on anything else except CDC or NIH information for more generic data.
Nords : take care.
Thanks, I've signed on to those websites and I'm working through them.

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Originally Posted by Rich_in_Tampa View Post
Just to be clear, not every treated patient gets all these side-effects, and some get none of them. Maybe his hematologist can help sort out what the likelihoods are since he/she knows Dad's details.
I guess any decisions will have to wait until he sees how he handles the first chemotherapy. Perhaps two good ideas beforehand would be a flu shot and a pneumonia shot.

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The chemicals really messed with her body temperature controls, fingers and toes, hair loss all over her head and face, and even her ability to recall the correct word. The word memory thing persists some, but the other things have greatly improved. Oddly enough, other chronic physical conditions she had before chemo improved for awhile.
It sounds like you don't live as near your dad as your brother.
So far the oncologist seems to think that the chemo is a reasonable approach (as opposed to, say, stem cell therapy) and they seem concerned about quality of life. But this is just one more life-threatening condition in addition to the Alzheimer's effects.

For all I know he may have had the symptoms for months or years. I don't think we would have even figured out this issue without him being in a care facility where they see multiple myeloma symptoms more often. The care facility is in a big Western town, and my brother lives just a few blocks away. It was a pretty challenging discussion to get Dad to move there from Grand Junction, and as far as he was concerned Hawaii was absolutely out of the question.

I'm not on the scene but I can take care of the finances, do the research, and suggest "helpful" questions. (My brother does not particularly enjoy any of those things.) But I'm not going to kibitz or kvetch-- I understand what it's like to be the guy on the spot who has to make the hard choices.
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Old 11-07-2011, 06:03 PM   #8
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My mom went thru Chemo for small cell lung cancer. She didn't experience any nausea, but had pills to take in advance of the treatments to make sure it was prevented. They also would give her some nausea medicine thru the IV on the 1st day of each Chemo session.

However, within a week of each chemo treatment she ended up in the hospital with low platlets and extremely low white blood cell counts. She would end up in isolation because her counts were so low.

She also had food issues where nothing tasted good anymore. She was always a picky eater, but was much worse after starting Chemo.

Everyone responds differently, so hopefully your father will be okay.
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Old 11-07-2011, 06:44 PM   #9
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She also had food issues where nothing tasted good anymore. She was always a picky eater, but was much worse after starting Chemo.
This is very common and I had that problem when on chemo. Chemo kills rapidly dividing cells and your taste buds fit that description. Meat especially tastes bad and "metallic".
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