Multiple myeloma questions

[Nords]

I'm going to apologize in advance to Dr. Rich_in_Tampa (and the rest of you oncology doctors & nurses) for my mangled vocabulary & concepts.. I'm heavy on reading but light on real knowledge. I'm hoping to change that through this thread.

In the vein of Michelle's thread on "delivering medical bad news", I suspect that the same is about to happen with my father.

Dad's 77 years old. He's deep into mid-stage Alzheimer's and he's been in the care facility for seven months. He spent the first couple months completing recovery from emergency surgery for a duodenal ulcer, so things have been going as well as can be expected. My brother visits once or twice a week. I get monthly bills from everyone and they're generally my only status report unless there's trouble. Last month his pharmacy filled a prescription for 60 Vicodin. My father "doesn't do" painkillers, so this must have been a big step for him... or the care facility was being very liberal with their use.

A few weeks ago the care facility called to let us know that they'd be taking Dad to an oncologist for a blood sample to test for multiple myeloma. They said he'd seemed pale and fatigued (signs of anemia) and had been losing weight. When I commented that this was quite a leap of logic from "symptoms of anemia" to "multiple myeloma", they said that it was a possibility that should be eliminated. Fair enough. I mentioned the Vicodin prescription and they said he'd been complaining of aches & pains, another possible symptom of multiple myeloma. My father has an extraordinarily high tolerance for pain, so it must've been pretty significant for him to complain about it. But maybe Alzheimer's is changing his lifetime convictions.

There was no explanation for the followup tests since then: urine samples collected for 24 hours, and yesterday's bone-marrow biopsy. My Wikipedia reading indicates that's to check for multiple-myeloma protein markers in the urine and to visually identify the cancerous leukocytes (plasma cells) in the marrow. So either the care facility is gouging Medicare or else they're confirming their already strong suspicions in order to determine an appropriate treatment.

They're just not talking about it with us sons. Maybe that's because the courts haven't formally awarded us guardianship & conservatorship yet, or maybe the care facility is just not ready to educate the family until there's a confirmed reason to do so and a recommended plan. That seems fair also. My brother says that he prefers not to deal with conjecture until it's a fact. While I can respect those approaches, I don't care for either one.

I've also read that multiple myeloma is a subset of "amyloidosis", or proteins depositing themselves where they shouldn't-- same mechanism as Alzheimer's. (Amyloid - Wikipedia, the free encyclopedia) In other words there may be a high correlation between Alzheimer's and multiple myeloma. Whether there's causation (and which one) seems open to debate. But maybe that's another data point to explain why the care facility has been all over this.

I have three concerns: education, treatment, and insurance.

There are thousands of websites dealing with multiple myeloma, and thousands more dealing with Alzheimer's. However there are relatively few dealing with both subjects, and they're mainly intended to diagnose or reassure. I'm looking for more detailed clinical information, especially about quality of life, progression of symptoms, and survival time. If anyone knows where I can find more information, I'm ready to do the legwork. I'm not grasping at treatment straws-- I want to make sure I understand what I'm being told, whether anything is being left unsaid, and what symptoms or other surprises or decision points we should be ready for. I'm hoping that the oncologists and the care facility are relatively enlightened about pain control and hospice. I'm expecting to have to educate my brother as well as myself, and I don't envy him being the guy on the scene having to make the first decision.

Which brings up the subject of treatment. From what I've read, when you're 77 years old the survival time for multiple myeloma is about the same as the survival time for mid-stage Alzheimer's. Call it 3-4 years, although I'm having trouble finding the "right" number. Add in the duodenal ulcer and the prolonged malnutrition that preceded it, along with at least four years of high blood pressure (already under medication). It would seem that fighting back against multiple myeloma would cause more suffering than the symptoms, and that pain control would appear to be the best option. When Dad still had his cognition, he strongly objected to being a "medical lab rat" and I have a stack of his letters expressing that sentiment. But if there's a better approach than hospice then I'd like to read more about it.

Finally, I had a tough time getting John Hancock to approve the long-term care insurance claim. They've started paying the claim (and they reimbursed Dad back to the beginning of his eligibility) so I don't want to rock the boat. I can't imagine any reason why multiple myeloma would cause them to try to weasel out of paying, and the policy doesn't have any exclusions like that. However their bureaucracy has made me paranoid. Is there anything about multiple myeloma that would cause a problem with the long-term care insurance company?

[donheff]

Quote:

Originally Posted by Nords Which brings up the subject of treatment. From what I've read, when you're 77 years old the survival time for multiple myeloma is about the same as the survival time for mid-stage Alzheimer's. Call it 3-4 years, although I'm having trouble finding the "right" number. Add in the duodenal ulcer and the prolonged malnutrition that preceded it, along with at least four years of high blood pressure (already under medication). It would seem that fighting back against multiple myeloma would cause more suffering than the symptoms, and that pain control would appear to be the best option. When Dad still had his cognition, he strongly objected to being a "medical lab rat" and I have a stack of his letters expressing that sentiment. But if there's a better approach than hospice then I'd like to read more about it.

My FIL is a bit further along than yours but DW and I are facing some of the same questions (DW does have medical authority). I don't know anything about multiple myeloma so I have no direct advice. But our general conclusion about trauma/disease is that Alzheimers is already a fatal disease and not a pleasant one. We have DNRs in place and will not attempt to treat other problems with the intent of prolonging life. We have told the facility medical staff that we support all steps to make FIL comfortable. And we have already talked to hospice staff to prepare for that change when the time is right. We will avoid moving him to a hospital if at all possible.

[Rich_by_the_Bay]

Quote:

Originally Posted by Nords ... I'm hoping to change that through this thread. I have three concerns: education, treatment, and insurance. Finally, I had a tough time getting John Hancock to approve the long-term care insurance claim. They've started paying the claim (and they reimbursed Dad back to the beginning of his eligibility) so I don't want to rock the boat. I can't imagine any reason why multiple myeloma would cause them to try to weasel out of paying, and the policy doesn't have any exclusions like that. However their bureaucracy has made me paranoid. Is there anything about multiple myeloma that would cause a problem with the long-term care insurance company?

Sorry to learn of your dad's worsening, Nords. It's hard enough when you are close by but even harder when you are thousands of miles away.

While myeloma is primarily a disease of plasma cells in the bone marrow, it often presents itself through metastases to the bones which can be very painful. Probably it's not his convictions about pain killers that have changed but rather the unprecedented severity of his disease. The tests that have been done sound conventional and appropriate. A bone marrow biopsy will likely follow. While amyloidosis is more common with myeloma and has been linked to Alzheimer's (though not that strongly) it should not be your focus since it is not directly treatable at any rate.

Here are two articles, one basic and one a little more detailed:

UpToDate Inc.

and:

Multiple myeloma symptoms, diagnosis, and staging

Your prognosis estimates are reasonable, maybe even a bit optimistic given his overall condition but as always, there are many cases that don't follow the rules. In MM, aggressive treatment usually means bone marrow transplant for which he is probably not a candidate. Velcade and other chemo options have some benefit in survival but often not dramatic. The hematologist can outline the options for you. Emphasizing quality of life is a good strategy to consider strongly if you have consensus, IMHO.

Good luck to you and your family. Keep Dad comfortable and trust your intuition. <sigh>

Best,

Rich

[Nords]

Quote:

Originally Posted by donheff But our general conclusion about trauma/disease is that Alzheimers is already a fatal disease and not a pleasant one. We have DNRs in place and will not attempt to treat other problems with the intent of prolonging life. We have told the facility medical staff that we support all steps to make FIL comfortable. And we have already talked to hospice staff to prepare for that change when the time is right. We will avoid moving him to a hospital if at all possible.

We've signed a stack of healthcare POAs and DNRs but I want to be able to back up my brother when decision time comes. We're putting a lot of faith in the care facility, mostly since they have far more experience than we do. They offer hospice, too, and Dad's much more likely to thrive there than if a move became necessary.

But I strongly suspect that we're being cajoled while they get this diagnosed and classified and figure out a treatment plan. Then it's time for the "You know what, Mr. Nords..." conversation.

Thanks for the links, Rich, that's the vocabulary I need to learn for the conversation. I'm not sure why the "basic" link would land on a login screen but I understand the basics. The second link is exactly what I was hoping to get.

Quote:

Originally Posted by Rich_in_Tampa Probably it's not his convictions about pain killers that have changed but rather the unprecedented severity of his disease.

I'm afraid so. One of our family stories is when Dad (in his 30s) had all four wisdom teeth removed on the same morning ("volume discount") and then went back to work. As the swelling progressed throughout the day his co-workers begged him to go home, so he finally left an hour early. At bedtime he consented to aspirin, but his biggest complaint was hunger. 30 years later he did his prostatectomy practically as an outpatient procedure, didn't want any help from "us kids", and dosed on just acetaminophen while healing.

Even with the duodenal ulcer in March he was planning on driving himself to the emergency room before a neighbor stepped in and insisted on driving. Dad said it never even occurred to him to dial 911. (Ambulances might be for sissies but maybe chauffeurs are OK.) So this latest pain must be pretty intense, but I don't know what memory he has of it from one day to the next. We'll see when they renew the Vicodin prescription after using up the first batch of 60.

Quote:

Originally Posted by Rich_in_Tampa The tests that have been done sound conventional and appropriate. A bone marrow biopsy will likely follow.

We're waiting on those results now. He's also having an endoscopy next week to follow up on March's duodenum surgery. If that's healed well (beyond the " band-aid patch" they stitched on from his omentum) then it might improve his painkiller & treatment options, as well as getting him off the GERD medication. The fewer medication interactions & side effects the better.

I know his nutrition is good (better than when he was living independently) but the weight loss is worrisome.

Quote:

Originally Posted by Rich_in_Tampa TYour prognosis estimates are reasonable, maybe even a bit optimistic given his overall condition but as always, there are many cases that don't follow the rules. In MM, aggressive treatment usually means bone marrow transplant for which he is probably not a candidate. Velcade and other chemo options have some benefit in survival but often not dramatic. The hematologist can outline the options for you. Emphasizing quality of life is a good strategy to consider strongly if you have consensus, IMHO.

I think Alzheimer's is complicating the myeloma troubleshooting in more ways than one... my brother said that Dad doesn't have the short-term memory to remember to collect all the urine for their 24-hour sample, and apparently the midwatch doesn't have enough watchstanders to catch up with him and remind him before he gets to the bathroom. I guess a 24-hour analysis looked like a good idea in the lab, not so practical in the field.

It does seem that stem cells would not be an option. I guess the biggest issue would be sorting out the medications & side effects to hold off the symptoms while keeping down the pain. The next threat would be pneumonia or fevers or infections or anything else that exploits a weak immune system.

My brother is more of a "go with the flow" type who's unlikely to ask questions of the doctor until a problem comes up, and maybe he just doesn't want to wrap his mind around it. This is the third or fourth time my brother's brought up his worries about being able to treat symptoms like this if Dad's on Medicaid. It's the third or fourth time I've told him that Medicaid is not on the radar. I've done the spreadsheet work, and Dad's long-term care insurance has at least three more years before it hits the payout limit. After that he has enough pension income and assets for longer than a decade. I think my brother is choosing not to examine the math until the doctors give him their official survival estimates. I can understand that attitude.

Thanks for everyone's PMs and e-mails... it's reassuring to learn that this can be dealt with. We're going to wait for the results on this round of tests. Once we hear the doctor's recommendations we'll be ready to sort out the options.

[Rich_by_the_Bay]

Links re-inserted, work for me now.

[Nords]

http://www.early-retirement.org/foru...ml#post1127688

[LOL!]

A sobering editorial: http://www.nytimes.com/2011/10/16/op...e-elderly.html
with a book to read as well.

[Nords]

Quote:

Originally Posted by LOL! A sobering editorial: http://www.nytimes.com/2011/10/16/op...e-elderly.html with a book to read as well.

Thanks, I've added it to my library list, although I fear we're now more contributors than beneficiaries.

I should point out that Medicare ponied up handsomely for Dad's ulcer surgery (over $50K) and six weeks of in-residence physical/occupational rehab at a skilled nursing facility (~$9K). His supplemental insurance covered the rest. (http://www.early-retirement.org/foru...ons-55688.html) Not only did Dad not spend a penny, but it was all handled in autopilot between Medicare and Bankers Life & Casualty while his clueless son scrambled to catch up on the learning curve.

Pretty much the same situation with the cancer. The oncologist and the chemotherapy are paid for by those two again, and the prescription drugs are largely covered by his pension's prescription drug plan (Medco). I didn't think to ask about the anti-nausea drug's retail price, but it's probably way outside of Medco's formulary.

So far Medicare has been good to my father. It'd be nice if it could pay for long-term care, too, but there's no way the country could afford to provide humane long-term care for its dementia elderly... and I wouldn't want to have to pay the tax bill to support it, either.

[HFWR]

Nords, I'm a bit late to this thread, but my mother was diagnosed with multiple myeloma at age 68. Through various treatments, she lived a reasonably good life for probably four years. Trouble is, she lived another six. The last couple of years weren't great. The increasing frequency of chemo treatments, and the need for extra blood, and the damaged immune system, all zapped her strength, and she felt lousy. That was the worst part for her, IMHO, because she was not a person who liked to sit around...

Anyway, no real insight into her treatment; my folks were in FL at the time. The disease is managable, but unfortunately not curable.

Tough times; I wish you and your father all the best.

[Nords]

Thanks again for the link, LOL. I tracked down Jane Gross' book at the library and it's a big help. I'll post a review of it next week. Excellent reference.

Thanks, HFWR. I don't know what they'll do if the chemo is only temporarily successful. At his age, stem cells are not an option. I don't know how much more Dad wants to put up with. He has an extraordinarily high tolerance for pain but he hates being a "lab rat". I'm not sure whether his Alzheimer's allows him to remember that he hates being a lab rat.

Dad's having his third chemotherapy session this week. So far so good. He's tolerated everything surprisingly well, he's up & walking around again, and he's no longer complaining of pain. He came back from the second chemotherapy session hungry for dinner, and my brother's started a Sunday lunch outing. Dad enjoys a good Reuben and a glass of wine, so he seems to be coping.

This month's pharmacy bill reads like a drug dealer's arrest report: prochlorperazine for short-term treatment of nausea & vertigo, in addition to the Emend at chemotherapy. However the prochlorperazine is also considered to be a pretty potent anti-psychotic (dopamine inhibitor) so it'll flatten out a happy mood along with the nausea. It apparently has some pretty significant side effects, including dyskinesia & dystonia. Ondansetron is another anti-nausea medication with fewer side effects (different mechanism from prochlorperazine). Lorazepam (the addictive tranquilizer) is used for short-term treatment of anxiety & insomnia. Its biggest problem is interfering with balance & stability, so elders tend to fall and break their hips. Prednisone is an immunosuppressant, perhaps part of the chemotherapy regime.

The care facility says that they're all "as necessary", and my Dad tends to ignore painkillers. Hopefully this won't cause any problems with his balance or walking, but my brother seemed to get him through the court hearing OK. Hopefully the care facility won't use any of these medications unless necessary, either. But they all seem to be 30-day supplies, and I see the bill every month.