Give Me a Very Basic Primer on Multiple Myeloma
February 25, 2016 2:35 PM   Subscribe

My mom just got diagnosed with multiple myeloma. I'm driving down to see her and take her to a bone marrow test next week, so I expect I'll be able to get all the specifics of her case with her and her doctors, but I'd like to hear from people with personal experience to set a baseline for my expectations.

My mom had been complaining about back pain for a couple months. Eventually she was told it was a compression fracture of her vertebrae due to osteoporosis, but it still didn't seem to be getting better like the doctors said it should, and apparently today she was diagnosed with multiple myeloma which I gather is the actual cause of the back pain. She said it's treatable and seemed relatively optimistic considering, but she's clearly still processing all of this and was understandably a little light on details. I'll have opportunities to find out more as this progresses, but I'm starting from a position of pretty low knowledge, as in I've read the Wikipedia article and something on the Mayo Clinic website about it, and I have no experience navigating the US hospital system and no experience helping people deal with these sort of illnesses beyond maybe visiting a family friend in the hospital for an hour.

Here are some of the things I'd like to know:

1) At least one of the things I read gave a 5 year survivabilty rate of 45%, which on the one hand seems low, but on the other hand, I have no idea what the survivability rate of just being a person in their 60s is. My mom is a woman in her mid-60s with no other major health problems who's been in very good health generally for her adult life. I also saw some indications that new treatments are much more effective than older ones, so maybe this number is out of date?

2) I haven't really dug into treatment options, but should I be getting geared up for a protracted struggle? My mother has a really great support system of friends that have really helped her in the last couple of months, but my sister lives across the country and I'm 6 hours drive away. There's a limit to how much support we can provide without major life changes if this is going to be years of debilitating treatment.

3) If it does go into remission, what sort of quality of life are we looking at relative to what it was, say, last year. 95%? 25%? She's been in a wheelchair because of the back pain, so even getting back to her prior level of mobility would be a big improvement. She's been thinking a lot about retirement lately, and I think missing out on some of the opportunities to travel and the freedom to do her own thing could be pretty devastating for her, and I'd like to get out in front of that possibility if it is a reasonably likely one.

I'm sure there's other stuff I'm not thinking of, but for now that should be a start.
posted by Copronymus to Health & Fitness (8 answers total)
Best answer: My boss (to whom I am very close) was diagnosed in August 2014. He started chemo the day after his diagnosis (which, according to my dad's {non-myeloma} oncologist, is common; they treat it aggressively). He did chemo twice a week for 8-ish months, at which point the chemo drugs started affecting him neurologically, PLUS the cancer numbers had dropped low enough that the oncologist felt safe suspending the treatment. That was quite a few months ago, and he is now in remission.

However, he still has blood drawn at least a couple times a week. By the time they diagnosed the myeloma, his kidney function was down to about 20%. It has not, and will not, recover, but the nephrologist dismisses that with a hand-wave, saying "Aww, you can live with 20% of your two kidneys for years."

After having been off the chemo drugs for a few months, they're now getting second opinions on whether he should start a maintenance drug. Some docs say yes, some say no, but none of them are acting like anything needs to happen RIGHT NOW.

Overall, he is relatively healthy, and the treatment was very successful. He's 73 and was otherwise in good health. He's lost weight and is weaker than he was before he started treatment, but that was an effect of the drugs, not the cancer. And, being 73.

Good luck with your mom. Memail me if you ever have any questions.

Oh, PS: My mom had a serious medical condition about 10 years ago, and the internet said she had 6-12 months to live. My dad was diagnosed with stage IV lung cancer this past June, and the internet said he had less than a year. Both are doing well -- and are actually snoozing on the couch in front of me as I type this. My very best advice from you is DO NOT LISTEN TO PROGNOSES YOU FIND ON THE INTERNET. That way lies madness -- and falsehoods.
posted by mudpuppie at 4:50 PM on February 25, 2016 [1 favorite]

Survival statistics are going to be out of date because they will naturally be based on old treatments. Even more important, the statistics will not tell you what will happen with your mother. I understand the desire to try to figure out what's going to happen, but there's just no way to know.
I am sorry you're going through this. My mother died of multiple myeloma, but it was twenty years ago, so her experience won't tell you much.
Support groups can be invaluable. There's a directory of multiple myeloma support groups here.
posted by FencingGal at 6:03 PM on February 25, 2016

Best answer: Seconding that Internet survival rates are not really current - they've made a lot of great strides in the past decade on treatments for the disease. The Multiple Myeloma Foundation is a good place to start for information.

Kidney function was also listed above - the kidneys are not always involved and you'll want to know if they are or not. If they aren't the prognosis is generally better than if they are. They test for kidney involvement as well as the levels of the disease through blood tests since the disease makes its home in the bone marrow.

In terms of the struggle ahead, it can really vary. My dad's was very aggressive and while it responded to almost every treatment they tried, it never lasted for long before his cancer levels rose again - things he went through included several types of chemo, a stem cell transplant, and at least two clinical trials for new treatments including thalidomyde (yes it does do good things in the right situation). His quality of life was pretty good even while undergoing treatment until his final year, at which point things just kept breaking.

Having said that, through his treatment and some advocacy work he did regarding treatment options, he met a lot of people who had amazing stories, including some that had been in remission for 10 years or more. My sense was that those cases were more common than cases like his, where it only really went into remission for a year and was otherwise a near constant presence for 5 years or so.

I'm sorry that you're going through this - it does suck, but not as much as it used to, when they really had no idea how to treat it. There are lots of resources out there, but I would stick to the foundations and organizations focused on the disease (like the one above) - blogs and random Google articles on the subject can be overly alarming.
posted by scrute at 6:25 PM on February 25, 2016 [2 favorites]

Here is another thing to help contextualize the survival rates you are seeing. Be aware that myeloma is extremely uncommon in young patients. That factors into the survival rates because older patients have comorbidities. When there are many different health problems things are more difficult to treat. Since your mom is in good health her prognosis may be much better than you'd expect.*

The International Myeloma Foundation is an excellent resource (linked above). If you need services in your area, contact the Leukemia & Lymphoma Society which focuses on all blood cancers including myeloma. LLS has more local chapters that do patient/caregiver services.**

*I lost my uncle to myeloma, but that was a decade ago when the prognosis was much more grim.
**I fund raise for both IMF and LLS.
posted by 26.2 at 6:40 PM on February 25, 2016

Best answer: My mother was diagnosed with multiple myeloma in 2013. Her initial bone marrow results and other test results were horrifying and the oncologist was pretty frank in telling us her odds were not good, but he'd do his best. She started chemo that same day. We were told that MM never goes into remission, but could only be controlled by chemo for the rest of her life.

She's been in actual remission for almost 18 months now. She's not on chemo (just participates monthly in a drug trial for a bone strengthening drug) and her oncologist is shocked and thrilled. Every month we hold our breath and every month her counts are below the threshold for an actual MM diagnosis. She's had some other challenges tangentially related to the MM, but she's almost back to doing normal 75 year old lady things. In fact, she's going to see Mount Rushmore and the Rocky Mountains this summer.

I think a lot of the MM information is outdated, my mother was initially on Velcade but had a super bad reaction to it so they switched her to a different drug combination that worked better than they ever imagined it would. Velcade seems to be the drug of choice for MM right now and for most people it has few side effects and works very well (my mom was a total anomaly). It was just one quick injection in her stomach once every 4 days. Depending on your mother's age and other health factors, she may be eligible for a bone marrow transplant. My mother wasn't due to her age at her diagnosis (over 70). Also, depending on how much bone loss your mom has, they may do targeted radiation to slow the "punching out" of the bone.

There are lots of people who live for year with MM, it's not as difficult to treat as it used to be. Send me a memail if you have any questions-I handled a lot of the financials for my parents and at first was at every appt (now she drives herself and it's totally not a thing anymore).
posted by hollygoheavy at 7:50 PM on February 25, 2016

I worked in a non-technical capacity for a lab one of whose PIs was one of the developers of Velcade at the time it got FDA approval. It was a dramatic improvement on prior treatment. That said, expecting an elderly person, especially one who is mobility-impaired, to manage more or less on their own throughout a lengthy course of chemo (IIRC, the usual course of Velcade is one year) is probably not that realistic. It's time to be identifying caregivers.
posted by praemunire at 11:51 PM on February 25, 2016

Response by poster: I figured I should give an update while this is still open. The doctors put my mom on a regimen of velcade, revlimid (that's a version of thalydomide like scrute mentioned), and dexamethasone. She responded really well to that treatment, and was technically in remission by early summer,. Honestly, she was otherwise in good enough shape that I think we probably could have stopped there with maintenance drugs indefinitely, and based on what the doctor said, I think that's where the best practices in treatment are more or less headed. However, it was decided that she should have a stem cell transplant, which I gather is the standard treatment for now. She had the transplant in mid-July which was accompanied by a much more severe dose of chemotherapy than the VRD, and she was pretty much laid up until the end of August. Her blood tests still looked good afterwards, and at her most recent check-in appointment at the end of January, they said she's in complete remission and probably won't need anything else in the way of procedures for the foreseeable future as long as the maintenance dose of revlimid continues to be effective.

She's regained a lot of strength and went back to work in January. A lot of her vertebrae fractured just because they were too weakened to support her head, so she's noticably bent forward now and lost almost 6 inches of height, but she's gone through a course of physical therapy and is getting around pretty well with just a cane. Overall, I think we got lucky that, like several of you said, the treatment options for myeloma seem to have gotten worlds better in just the last 5-10 years. It's crazy to think that just a year ago I was thinking about 5 year survival rates and by November my biggest concern was wishing she would stop wearing a terrible wig she bought cheap on the Internet when her hair had mostly grown back anyway.

Anyway, thanks to everyone who offered advice and shared experiences. I'm extremely grateful that my experiences more or less matched up with the best-case scenarios you offered.
posted by Copronymus at 8:53 PM on February 20, 2017 [2 favorites]

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