[JimNY]

The new multiple myeloma definition - what do you think?

by JimNY on Sat May 30, 2015 7:27 pm

Hi everyone,

Ever since it came out last fall, I've been trying to figure out how I feel about the new definition of multiple myeloma agreed to by the IMWG.

The old definition said that you have what was often called "symptomatic" multiple myeloma if the myeloma cells in your body are causing organ damage. The particular organ damage that was required for a diagnosis of (symptomatic) multiple myeloma was that you had to meet one of the "CRAB" criteria (high Calcium, Renal damage, Anemia, or Bone lesions).

The new definition expands the definition of (symptomatic) multiple myeloma to include people who, in the past, were considered to have smoldering myeloma. In addition to the CRAB criteria, which still are in place, there now are additional "myeloma defining events" which say "Okay, your disease isn't symptomatic yet, but it's very likely that it will be soon, so you really do have multiple myeloma, which means you should start treatment for the disease."

That sounds like a great idea until you realize that the myeloma defining events were chosen so that, if you have one of them, you have an 80 percent chance of getting one or more of the CRAB criteria in a couple of years.

Here's the thing. That also means that 20 percent of the people with an MDE will NOT progress to having any organ damage in the near future, and some may not progress at all.

What bothers me is that the definition wasn't changed to say something like: If you have one of these MDEs AND there are signs that your disease is steadily progressing, you have multiple myeloma that needs to be treated.

Because, as we've seen from some specific cases mentioned here in the forum, there ARE people who are "symptomatic" under the new definition of multiple myeloma, but who have had stable disease with no organ damage for a year or longer.

So my question is: What do you think about the new definition? Is it a good idea?

[gardengirl]

Re: The new multiple myeloma definition - what do you think?

by gardengirl on Sun May 31, 2015 9:18 pm

Hi Jim,

The new definition is what made me start treatment, and I ask myself every day if I've done the right thing! We had an 80% chance of thunderstorms this afternoon, but it didn't happen!! So could I have been in that 20%? One specialist strongly urged me to treat BEFORE kidney disease set in because, as he said, "it could get ugly". So it's now my bedtime and thunder is rolling in ... hmmm ... will it rain or blow over?

I'm anxious to hear if anyone else started treatment based on the new definitions (where they were otherwise "watching and waiting").

[Rick R]

Re: The new multiple myeloma definition - what do you think?

by Rick R on Mon Jun 01, 2015 2:16 pm

gardengirl-you are not alone.I also started treatment (CyBorD) 4 months ago due to triggering the MDEs, although to be fair my FLC numbers were suddenly going up quickly. It is a difficult question but my onc and second doc at Mayo both were concerned with s-t risk to kidneys.

[JimNY]

Re: The new multiple myeloma definition - what do you think?

by JimNY on Mon Jun 01, 2015 2:52 pm

Rick - I can understand starting treatment in a situation such as yours, where the disease is clearly progressing, and there's little or no doubt that you'll eventually become symptomatic according to the previous definition of multiple myeloma. I think it makes sense to have started treatment in your case.

Gardengirl - Sounds like you had a tough decision to make. Were your lab results showing any signs that your disease was progressing? Or was the decision made to start treatment based on just one set of lab results (presumably your M-spike, immunoglobulin levels, free light chain results, and a bone marrow biopsy, among others)?

I realize that some doctors will probably not just blindly follow the new definition and start treating each and ever patient who meets the new definition of "symptomatic multiple myeloma". They'll probably do what seems to me to be better, which is wait a little bit in some cases and see if the patient's disease is showing signs of progressing.

But what about all the other doctors who will treat each and every one of the patients who, now rather than before, are considered as having "symptomatic" multiple myeloma? Is that a good thing?

[Toni]

Re: The new multiple myeloma definition - what do you think?

by Toni on Mon Jun 01, 2015 10:51 pm

This "redefinition" makes a requirement for insurance companies to COVER treatment in a situation which previously was not covered, even if the physician had a strong case for doing so. I suspect that there may be further permutations in the definition as multiple myeloma/SMM/MGUS become better understood.

The consequences of untreated multiple myeloma are catastrophic. Historically, this is what we've seen far more than "too early" treatment.

[JimNY]

Re: The new multiple myeloma definition - what do you think?

by JimNY on Tue Jun 02, 2015 7:45 am

Hi Toni,

Thanks for sharing your thoughts on the issue.

You may be right that issues like health insurance coverage could have played a role in the redefinition. I would ask, however, whether it's right for insurance concerns to be driving what doctors and scientists define to be a disease that requires treatment.

My main response to what you said, however, is that I'm not arguing that there shouldn't have been a redefinition of multiple myeloma. I think that, if you think a redefinition was warranted, then you could have done a better job with the redefinition. For people without truly symptomatic disease -- no anemia, no bone damage, no kidney damage, etc. -- couldn't they have expanded the definition so that it's based not just on lab results FROM ONE POINT IN TIME, but on evidence that a patient's "smoldering" disease is actually progressing so that it's basically guaranteed to cause damage to the rest of the body soon?

Here, however, is another point to consider. There have been many trials in the last 20 yeas testing whether it's beneficial to treating smoldering myeloma early, before the disease becomes symptomatic. As far as I know, however, only one key trial showed there was a survival benefit to early treatment. One. (It's the Spanish trial whose results were published maybe two years ago.)

And if you read up on what some people have had to say about that trial, you'll find some valid criticisms.

[Blee]

Re: The new multiple myeloma definition - what do you think?

by Blee on Fri Jun 05, 2015 11:31 am

JimNY--Having similar thoughts about the new definition, I have queried several multiple myeloma specialists. For SMM patients who have been stable despite the new MDE, (the 20%?), I was given the impression that it may be OK to continue careful monitoring. However, this is only for established SMM patients who have already "proven" themselves.

Please private message me and we can discuss more.

[skolman]

Re: The new multiple myeloma definition - what do you think?

by skolman on Fri Jun 05, 2015 4:08 pm

I think I also fall into the new definition for treatment my bone marrow count was between 40-50% I was under the impression it was 35% but looked it up recently again and saw that it was the higher number (damn) my lamda/kappa free light chain ration is 621 which would also put me into the new definition....I just had my last blood test this week and go back to Sloan on Wednesday to meet with my doctor. my red blood cell count is 3.87 which is down from 3.95 from the last test 3 months ago. My bun count keeps going up and is now 27 but maybe I am just a little dehydrated because my creatinine level is fine at .7 so I think my kidneys are ok...just a little concerned about the anemia. I have been stable like this for almost 2 years now. I am glad that I did not treat because I have been good for this time...I know treatment is not so great with all the side effects. I will let you know after Wednesday what the verdict is.

[JimNY]

Re: The new multiple myeloma definition - what do you think?

by JimNY on Fri Jun 05, 2015 10:25 pm

Hi Blee,

I have the same impression that you do about how myeloma specialists are approaching people who could be considering symptomatic under the new criteria, but have been smol­der­ing for a while. Dr. Rajkumar reacted that way in the comments to his article here at the Beacon about the new criteria, and I think several of the other specialists who post here in the forum have suggested they feel the same way.

It's not really those cases that I worry about. It's the people in the future who, because of the new criteria, will be treated right away when their SMM probably should have been observed first for a while to see if it's showing any signs of progressing.

Hi susan,

Sorry to hear about some of those lab results you mentioned. I saw your recent post about your BUN level but hadn't had a chance to respond yet. You're right that your lambda/kappa ratio is high. Has it also been changing over the past year or two, or has it held steady?

I will be interested to hear what you learn on Wednesday. Please let us know.

But most of all -- Good luck!

[Stan W.]

Re: The new multiple myeloma definition - what do you think?

by Stan W. on Tue Jun 09, 2015 2:44 pm

I never believed in the "watch and wait" nonsense.

I started treatment before any bone or organs were attacked. My IgG and M-spike were rising. But, weren't as high as others I've heard of.

I was in a clinical trial with a bone strengthening drug. 6 months in, the doctor was seeing an upward trend in my numbers, and pulled me from the trial.

It was a good choice to start. I achieved CR in 4 months. In 6 months I was in SCR. Stayed that way for a year and a half. This past October my FLC ratio went out of normal range. Doctor said not to worry as long as Kappa is normal. The ratio has fluctuated in and out since. Still in CR. I've had a Zero M-Spike for two years. No transplant. Not even the usual 25mg of Revlimid. I started at 15mg.
Now that I'm on maintenance, it's 10mg every Monday, Wednesday & Friday without a break. With 10mg of Prednisone on those days.

I turned down Dex from the beginning because of the side effects others had. I missed less than a week of work over 9 months of Velcade/Revlimid/Prednisone. Some of those days were due to Zometa side-effects.