Multiple myeloma

[captain queeg]

Didn’t see that in any of the message titles and don’t want to go thru opening every message to see if it’s alreadybeing discussed somewhere. I guess it’s fairly rare but you know how it is, once you have something seems like you run into others. Mine is very early stage, would be interested in hearing what it’s like as it progresses? And various treatments?

[shenmue]

1. Hold on

[Thekaspervote]

2. Don't be afraid to get a second opinion, or a third

Some see this as trying to run away from the diagnosis, it’s not. Medicine is not an exact science.

[greatauntoftriplets]

3. I know a woman who has lived with it for years.

She doesn't always feel well, and her appetite has been affected. But she's still here.

Best of luck with your treatment.

[EmeraldCoaster]

4. I got it it sucks

Im turning 60 the year mine is between c4 and 7 in and on my spinal column. Mine is associated withe a syrinx at c4. Pin MGMT is all I got.

[kurtcagle]

5. Not great, but survivable

My mother passed away from Multiple Myeloma (MM) five years ago, and I have a cousin who has it.

If you can catch it early enough, it is generally treatable, though you may end up having to go through transfusions periodically to flush it out. With my mother, it had managed to get into the bone marrow in a number of bones, making it impossible to flush. There are a number of therapies that are being developed against it, so you may want to look into becoming part of a study.

[captain queeg]

6. Mine is very early stage

In that respect I am lucky. They wouldn’t have found it if I wasn’t so sick last year and having so many tests. It’s funny, when I was getting so many tests done I was trying to look at the results and self interpret with the internet. I started suspecting myeloma but the one test they needed for absolute verification is the bone marrow biopsy and they kept avoiding doing it I suppose it’s an expensive test. At any rate I finally had spine surgery because I was so messed up and all the pain seemed to come from the area of a previous spinal fusion. As it turned out I had an infection in my spine which was causing most of my pain and other problems. So we got that taken care of and so far the cancer hasn’t caused me much grief but I know that will change

[radical noodle]

7. My mother-in-law had it

She lived for several years after it was discovered (she lived to see her 90th birthday). There are many treatments available but generally it's something you'll always have to fight. Take care.

BTW, an interesting side note is that the much-maligned Thalidomide drug seems to be useful against MM, at least at some stages. My 80+ MIL had to certify she was not pregnant and jump through hoops to get it.

[captain queeg]

8. I thought I'd replied to this earlier but don't see it.

Yes, I have a friend who has MM and he’s taking Thalidomide. I’m not yet taking drugs. They found the cancer when looking at things last year. I was very sick and anemic/weak but it seemed a bad infection turned out to cause most of my problems. I’m still anemic, it is cancer of the bone marrow which is where your blood is produced. But although my blood is not 100% it’s not too bad. They monitor certain blood proteins and when they get far enough out of balance they’ll start treatment. The doc tells me don’t be in any hurry to start treatment because it is unpleasant at best.

I’ve been stable for a year now. There is a certain ratio of blood proteins that they monitor. The ratio can get out of whack with something called MGUS which is a precursor to MM, that condition is not all that rare, about 2% of Americans have it. Once the ratio reaches 100 they’ll start active treatment and mine is still in the teens.

[radical noodle]

9. It's good they caught it so early

My MIL tolerated her treatments well. I hope by the time you need treatment, they'll have found a cure.

[femmocrat]

10. It took a long time to diagnose.

I just wonder if they had looked for it sooner, if I would be further along in treatments. I am just starting radiation this week after three months of seeing doctors and running scans, etc. It took three weeks for the biopsy results to come back. I will appreciate any prayers. Thank you all.

[captain queeg]

11. Keep me posted

I’ll say a prayer for you now.

I’d like to know what to expect as I said before mine is very early and they haven’t started treatment yet. I just saw the cancer doc a month ago for blood tests. Still stable at a low level. I am not glad I have it, but am greatful they have found it early so will have the advantage of early treatment. It took a long time for the initial diagnosis. Even after they finally did a bone marrow biopsy it took a few more weeks and I think that the marrow biopsy is the definitive test.

[femmocrat]

12. Yes, let's keep in touch.

And sending prayers your way, too.

Let’s get through this together!! Best wishes to us both.

[captain queeg]

13. Are you in much pain?

I ask because my doc always seems surprised I’m not hurting much.

[femmocrat]

14. No. Glad you aren't either. Maybe that leads to diagnosis delays?

I have pain in my hip which I thought was bursitis. The radiation doctor ordered a cat scan. He was right; I was wrong.

[moonscape]

15. I was dx'ed with multiple myeloma in 2015

MM is, as you know, a cancer of the plasma cells. I had developed a plasmacytoma (tumor) in my tibia that broke out of the bone - that's how it was discovered.

MM manifests so differently in different people. I have no kidney involvement but do have bone involvement. Did a 6-month round of chemo and am on maintenance chemo now with monthly blood work and annual full-body MRIs .

There have been so many therapies coming online for MM that we are living much longer and although not curable, it's manageable.

Two great resources are the MM forum/discussion at Smart Patients and the most excellent myelomabeacon.com

[captain queeg]

16. Thanks for the info

I know the predecessor is MGUS which isn’t particularly rare, of those a small minority progress to MM. My doc says I’m beyond MGUS but not far enough along with MM to be treated. My GP doc tells me not to be in a hurry to start treatment since it unpleasant. There is some sort of comparison of certain plasma cell they are watching and that’s been stable. Cancer doc has no idea why mine has not progressed but I’m not complaining.

[moonscape]

17. If you get to the point of needing treatment, if

you progress from MGUS (and you might not) to myeloma, I would highly suggest a myeloma specialist. Myeloma is not rare, but it is uncommon. Even my local hematology oncologist who got her fellowship under my specialist at a teaching hosp has only 5 myeloma patients. My oncology specialist has only myeloma patients. It makes a difference having that clinical experience and overall specific knowledge. It's a fact that myeloma patients who see specialists vs general oncologists live longer.

With respect to your GP, induction therapy for myeloma is not all that unpleasant in the scheme of things. But, no reason to have therapy or put any chemo in your body if it's not needed.

[captain queeg]

18. Don't think I had read this reply yet

Good info thanks. I bookmarked the myeloma discussion page you recommended (already forgot the name so good thing there are bookmarks). I regards to finding a doctor specializing in MM, I think I have one though probably worth doing more research. I looked her up online and know she has co-authored some papers on MM. I have my next appointment at the end of January. I’ve been real stable up to this point.

[captain queeg]

19. Haven't seen any recent posts here; just got another 3 month check

I get blood tests every three months to check for progression. The main, important test takes a couple weeks to come back; they watch the ratio of certain branch chain aminos or proteins or something so I didn’t get those results yet. But all the other blood tests came back the same as the last few times. One thing different this time is they had me collect my urine for 24 hrs and turn that in. She’s a bit concerned because of the amount of protein in the urine. She thought it could be from my use of ibuprofen or maybe just that I don’t drink enough water. I’ve been told that a lot for quite awhile. I only turned in about a liter of urine which isn’t much for 24 hrs. I’ll remember to drink a lot for awhile and get back to my usual. Anyway she took an extra sample before I left to test something that the initial test didn’t cover and said she may contact me with a referral to see a kidney doc. Apparently some kidney (mal)functions can come from MM.

[DFW]

20. Just saw this by accident

I usually don't follow these forums

A guy I knew got MM over ten years ago. He called me to say farewell, expecting to be gone six months after the diagnosis. He kept on working as long as he could, and lasted well over five years, was fully operational until the last few months. He refused to stop fiddling with chemicals, which his doctors suspected was the cause of his MM in the first place Apparently (I only heard this from him, so no concrete knowledge), ethnic European Jews (his background) almost never get MM, and those that do, fiddle with chemicals a lot. No telling how long he would have lasted if he had cut out his hobby altogether.

[captain queeg]

21. What do you mean by fiddling with chemicals? Taking drugs? Or some hobby chemist?

[DFW]

22. Hobby chemist, no drugs at all

But really intensive work with chemicals, used to love to alter the surfaces of coins, stuff like that, and hours a day, decades long

[captain queeg]

23. Did he wear gloves, respirator, etc?

Seems like a lot of cancers come from some kind of exposure. I really can’t think of anything like that, but it reminds me of something I was going to talk to the cancer doc when I saw her but forgot all about it. My sister was reading a book about cancers and ran across a reference to “butcher’s warts”. I worked in the meat industry for about 10 years. I was always getting cut. Back in my 20s I had a lot of warts that seemed to start at one of those scars and spread all over my hand. Apparently people with butchers warts often develop cancer. I’ll have to remember to say something next time I see her.

[DFW]

24. No idea, good point

He had been doing this since the 1970s, when he was in his early 20s, and was over 55 when his cancer broke out. Whether or not he was wearing some kind of protection later on, I suspect he never even thought of it for the first few decades. I was never around when he was "playing."

[captain queeg]

25. Most people didn't think about that stuff back then

In the mid 1980s I worked the summer at an oil refinery and although they didn’t do a great job on safety it’s the first place I ever worked that had periodic safety meetings and got issued specific safety gear. That was a big money operation, as time went by smaller outfits started paying attention. So I doubt it even occurred to a home hobbiest to take precautions until maybe recently.

[captain queeg]

26. I got my blood test results, kappa/gamma ratio (or what're it is) stayed stable.

But she does want me to see a nephrologist, a kidney doc. Like I said it’s probably because I don’t drink enough water and have started keeping a quart by my bed to drink when I get up. But I guess there can be some indicators of myeloma in the urine and kidney function so I have to get that checked.

[captain queeg]

27. Thought I'd post an update. My regular 3 month check got cancelled for now

Have an appointment scheduled for June. I can’t remember if it’s a video appointment. I finally had my appointment with the nephrologist, that was a video appointment. Also went in for blood test and a pee test. The nephrologist didn’t like what he saw in my urine test so had me do a take home 24 hour sample. That came back ok. Doing a spot urine test isn’t all that accurate and I’d shown high creatine, BUN and protein. For the 24 hr test it was good with just a slightly high protein level that he wasn’t worried about. So at least it doesn’t look like I have kidney disease on top of MM.

The main focus was on my blood tests and those all came back the same as last time; a little anemic and stable kappa gamma ratio. They did notice I was deficient in vitamin D so started on a supplement. Overall pretty good news.

[moonscape]

28. Great news!

I know you meant kappa/lambda ratio

In other great myeloma-related news, is that daratumumab just got FDA approval to be administered sub-q. The injection takes about 5 min vs hours for infusion.

There's progress every day, or quarter, or at least every year!

[captain queeg]

29. I hadn't heard of that medication

Like I said I’m not even being treated yet. I wonder if anyone has heard how myeloma patients fare if they get the Covid-19? I’ve read cancer in general is an important comorbidity.

[captain queeg]

32. I meant for my reply to go directly to you, check it out below.

In the main comment thread. Many people have MM for a long time. It’s fairly treatable.

[Ms. Toad]

38. As to metformin -

Did she switch to plain Metformin? It is only the extended release version that has NDMA in it.

There were enough ER brand names on the list that I had my doctor switch me to regular metformin (rather than to a different ER brand which temporarily tested as within acceptable limits). Regular metformin does not contain NDMA.

[Ms. Toad]

40. When I did the research, pretty much every version of metformin ER was implicated

They initially didn't pull mine back, since the recall didn't require it. They just shipped out a different brand for the next shipment. That new brand was implicated earlier than the one i was initially taking, but has not issued a recall. In the study i found implicating the second brand, all our nearly all other extended release brand has some level of NMDA in it. At that point, since I was already living with breast cancer, I asked the doctor to switch me to regular metformin, which hasn't been implicated at all (It's something in the ER ingredient/manufacturing process that added it.

[Ms. Toad]

43. One thing to be cautious of in diabetes literature (the bulk of the metformin literature)

is that neither the medical profession nor the medical societies that cater to diabetes trust diabetics to manage their illness. So be skeptical of the source when reviewing literature.

I've decided it is (at worst) harmless - and may be helpful even though it has no impact on my diabetes - so I take it.

But - my doctor is currently pushing statins - which are not harmless - because of the high rate at which diabetics die of heart attacks. When I dive into the research to look for refined risk evaluations, I fall into a category for which the risks of statins are higher than the risk of a heart attack. Even medical societies that cater to diabetes suggest having your blood glucose drop to below 140 2 hours after eating, when a person without diabetes virtually never goes above 140 in the first place (a goal which is achievable, at least in the early stages, for most diabetics just by car restriction.

So make sure you are looking at the research itself, not the recommendations drawn from research, because the vast majority of recommendations treat diabetics as children unable to control themselves, so we must medicate them to counter their self-destructive behavior.

[Ms. Toad]

45. There was a really good video that helped me understand the risks of statins

It's been a while - so this is not technical and is from memory. Cholesterol is a downstream product that your body needs. There are other compounds in the same pathway that the body also needs. Statins fool the body into stopping production of cholesterol - but when it needs more it has a ready source in the bloodstream and can just suck in (out of the bloodstream) everything it needs - instantly lowering cholesterol. Unfortunately, the other essential compounds in the pathway aren't just floating around in the bloodstream, so the body just goes without once the metabolic pathway is fooled into stopping production (or prevented from it - my memory is fuzzy).

[captain queeg]

31. I hope you get good test results. Mine is called smoldering MM

Which means it’s just sitting at a low level. Low enough I’m not being treated. But I’ll pass on a forum that I joined recently; smartpatients. In it people share their experience and I see lots of subjects covered. I’d recommend you join. There are many forums within it including multiple myeloma (MM) also diabetes and all sorts of stuff. I bet you could find someone who is having similar situations and ask questions. Good luck.

[captain queeg]

34. You are welcome

Yes I’ve seen people in the forum that have had smoldering MM for many years. When the docs first used that term I didn’t think about it much, but it really is a perfect way to look at it. In my case the only real effects I’ve noticed is anemia and after taking supplement for a couple years I am finally (barely) in the normal range. I go for blood tests every few months but so far that is all. But it could take off at any time. I do know of two other guys in my age group that have had MM for years and treatments have kept it at bay

[captain queeg]

37. Thanks for the info. Sounds like you got the best Xmas present possible.

So happy for you. It does seem like they’ve made dramatic improvements in treatment nowadays. I still haven’t really been getting treated though I did have to go in for an iron IV infusion last month. It was strange because my other blood numbers were good, just real low iron. And I had ok hemoglobin and hemacrits. That just didn’t seem to jibe so I’m going back in January for more tests. I haven’t really thought about it much lately with all that’s going on with COVID and the election. Cant wait for 2020 to be over.

[captain queeg]

48. Hi. First I wanted to comment on your having had several accounts over the years

That is exactly my case. I’d not log in for awhile and then forget my ID or password so I’d just make a new account. I think this is my third but I’ve had it awhile. Now I’ve got that stuff stored on my phone.

Yes you remembered correctly, I’m not diabetic and they found my SMM while looking for some cause to my condition a few years ago. I was in real bad shape with my back, basically bed ridden. As it turned out the main cause was a previous surgery that had become infected. They did a follow up surgery and a spinal fusion and discovered the infection at that time. I guess the good thing was they found the MM at a very early stage. I guess it’s been about 3 yrs now. I go in for blood tests every 3-4 months but so far it’s been pretty stable at that level. The doc says I have M spikes. I haven’t spent a lot of time thinking about it, I figure I have enough on my plate in the present so haven’t thought much about it. There’s something going on though and my oncologist wants to do a PET scan next month. I guess they inject you with some marker that will show abnormal cellular activity. So we’ll see. The one ratio that they talk about, I think it’s kappa/lambda or something has been almost exactly the same since they first found it. I know she’s concerned about my kidney function. I think it’s mostly because I don’t drink enough water. I really need to stay on top of that. Staying hydrated is important for a lot of things.

Anyway, while I haven’t thought a lot about the SMM lately I do pay attention to cancer news. Seems like a lot of guys in my age group have prostate issues and a good friend of mine is stage 4 prostate cancer. I think he’s about at the end of his rope, he’s held in a lot longer than anyone expected and has had all sorts of treatment. Just finished up a round of chemo and it didn’t help. In Washington where I live the have the Death with Dignity and he just got his prescription for that. I think he’s about ready to pull the plug. I can certainly understand that. I wanted to go up and see him, it’s probably been six months since I have. He says he doesn’t think he wants me to visit but I might go up anyway, I got a feeling he won’t be around much longer. Anyway, I don’t really know hew MM will affect someone beyond just being in pain. I know my oncologist always wants to know if I’m having pain and I’m really not. Especially compared to how I was 3 years ago. Hope your mom is doing better. I know it’s common to not follow doctors recommendations but I think you are right and it’s best to do so. Or if you don’t at least tell your doctor. I know diabetes has a lot of bad complications. It’s easy to slack off when you are feeling better. Take my case where I am not always cognizant of staying hydrated. Seems like a lot of people I know are having serious medical issues. Guess that comes with age, but so far I’ve been pretty fortunate.

[jfz9580m]

49. Thanks for the update!

I am glad to hear that your MM has not progressed yet. I vaguely got the impression from some of those abstracts that it is worse when it is comorbid with diabetes.

Sorry to hear about your friend. Just goes to show any cancer can be hideous..I thought prostate was one of the more treatable ones. MM is not that bad based on my experiences as a care-giver for my mom at this point. But let's hope yours never goes from smm to mm.

And thanks again for recommending Smart Patients to me last year . I found it very useful in the early months while nursing my mom. I rarely have time to check more than one site these days and am logging off even here for a few months, but was just curious about how you were. Stay safe !

[captain queeg]

47. It's late and just saw this. I appreciate your comments and want to address them more fully so I'll

Spend time on a better response tomorrow. But I’ve still been doing pretty well and thanks for asking.

[jfz9580m]

50. Thanks for your assistance Captain Queeg

My mother passed away due to what I thought was a minor infection on Nov 27, 2021 at the age of 72. I have barely gotten over the shock of it. I thought she was in remission.
A bit of a roll of the dice with this foul cancer. A stupid random infection can apparently kill. I blamed myself a lot after that, but anyway she is not coming back so shrug...
Thanks anyone who reads this for the support I got from this forum...Horrible disease...at least she did not suffer much.

[captain queeg]

51. I'm so sorry to hear that. As you say at least she didn't suffer too much.

[jfz9580m]

52. Thanks.

Never take an infection lightly with MM would be my one piece of feedback. Wishing you all the best.

[captain queeg]

53. That's good advice I will take

Back when I got diagnosed I was in terrible pain. As it turned out the pain was due to an infection of an old back surgery. I was on antibiotics IV for 6 weeks and I’ve been on oral amoxicillin ever since. People always tell me I should get off them but my doctor thinks I should keep taking them. Guess I’ll listen to the doc.