[blessthischick]

Re: What probability of progression justifies treating SMM?

by blessthischick on Thu Aug 28, 2014 5:37 pm

Hello JimNY et al in this post

Thought I would add my twopenneth-worth here.

As an individual with high risk genetics, it has been made crystal clear that the best way forward for me is to be watched extremely closely for ANY signs of moving toward active disease, and they will treat me in the smoldering stage.

I have lambda light chain smoldering myeloma, so they check my serum free light chains (sFLCs) monthly, 6-monthly bone marrow biopsies (BMBs) and 6-monthly spinal MRIs.

When I need treated, I will have 6 months of oral chemo followed by melphalan and an auto transplant. I am in the UK and this is how they do it here. I have pointed out to my consultant that I would prefer an allo upfront, but he looked at me as if I had grown horns

I feel I am part of a big game which I have to play really well in order to win a longer outcome - survival - so although I don't feel happy about earlier treatment in terms of my qoal, if it keeps me around longer to perhaps benefit from newer meds, which I am assured by the myeloma specialist are in late stages of production, then so be it!

Cheers for now

[JimNY]

Re: What probability of progression justifies treating SMM?

by JimNY on Tue Sep 09, 2014 2:48 pm

Thanks everyone for the additional replies.

Multibilly mentioned how many patients go "bonkers" with the "watch and wait" approach that is generally taken in smoldering myeloma. I agree that this is the case, but it would concern me if physicians used that as a justification for treating smoldering myeloma patients earlier rather than later.

One of the things this discussion has highlighted for me is that a high probability of progression shouldn't be the only thing that physicians should use to justify treating a smoldering patient early. It seems to me that there also has to be a firm basis for believing that treating such pre-symptomatic patients early will result in a survival advantage.

The other thing that I've taken away from this discussion is physicians really need to think about building estimates of risk of progression that are not just based on lab results from a single point in time.

Right now, there are probably "lower risk" smoldering myeloma patients who, if you looked at their lab results over time, are showing clear signs that their disease is progressing and very likely to become symptomatic in perhaps two years. Yet, because all the risk models are based on lab values at a single point in time, the patient is still classified as "low" or "moderate" risk.

I think the fact that so many of the progression estimates are based on just a single set of lab values is one of the things that many people here have found bothersome about the concept.

I hope that others with thoughts on this topic will chime in with them, but I appreciate the feedback everyone has given so far.

[gardengirl]

Re: What probability of progression justifies treating SMM?

by gardengirl on Wed Sep 10, 2014 9:40 pm

Hi again,

Thought I would post again since I just saw the specialist today. Looks like I'm headed for treatment in about 6 months ... nice to be able to plan ahead! He said that because my FLC ratio is over 100, that it is justification for treatment (this will be published very soon), even though my labwork has been stable over the past 10 months. He strongly feels that we should not wait for CRAB to develop given the high-risk for progression.

So, for the high-risk smoldering myeloma patients, my take-away is to plan for treatment within the year.

[zuska]

Re: What probability of progression justifies treating SMM?

by zuska on Thu Feb 12, 2015 5:51 pm

Hello fellow Smolderings,

The International Myeloma Working Group in Oct 2014 updated the criteria for early treatment in smoldering multiple myeloma and redefined some smoldering myeloma patients as multiple myeloma. Here's a link that explains the new definitions:

SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014.

As I understand it, it allows high-risk smoldering patients (previously called ultra-high risk) to get treatment without waiting for end-organ damage or being part of a clinical trial.

Share a smile,
zuska

[gardengirl]

Re: What probability of progression justifies treating SMM?

by gardengirl on Fri Feb 13, 2015 10:23 am

Hi zuska!

Because of these new guidelines, I have started treatment. Now the question is: Does treatment for early myeloma (formerly ultra-high-risk SMM) need to be as aggressive (i.e., induction, followed by a stem cell transplant) as for someone newly diagnosed who has exhibited CRAB symptoms?

[zuska]

Re: What probability of progression justifies treating SMM?

by zuska on Fri Feb 13, 2015 1:20 pm

Hi gardengirl,

That is a great question. I don't know the answer but I suspect that your treatment plan would be determined by the type of myeloma and its aggressiveness. Confer with your hematologist.

Also, I would start a new discussion with that question. I'm afraid your very interesting inquiry will be buried in this thread on progression.

[Cheryl G]

Re: What probability of progression justifies treating SMM?

by Cheryl G on Fri Feb 13, 2015 3:05 pm

Hi Zuska,

If you're interested, GardenGirl did start a forum thread recently on a topic related to the question that you suggested go into a separate forum thread:

"Stem cell transplant for "early multiple myeloma"?"," forum disc. started Jan 22, 2015.

[jhorner]

Re: What probability of progression justifies treating SMM?

by jhorner on Mon Feb 16, 2015 10:12 am

Hello,

The problem I see with the specifics of "high risk" in SMM is that it largely depends on cytogenetics-molecular markers and bone marrow biopsies are not commonly repeated. The only time that I know of where BMB are repeated is when a patient is nonsecretory and a BMB is required to monitor their disease, otherwise this isn't common practice. So, a patient could have normal molecular markers when they are first diagnosed and then this could (and likely will) change over time, where they may have translocations and deletions, but no one knows this, so it isn't given consideration in the criteria for risk and treatment.

I struggle with the heavy emphasis placed on this when the information is largely unattainable in the current standard "watch and wait" guidelines.

J

[Kebo]

Re: What probability of progression justifies treating SMM?

by Kebo on Sun Mar 01, 2015 9:30 pm

Interesting thread on the high-risk SMM. I also am high risk, plasma cell percentage from BMB >20%, and FLC ratio is well over 100.

My oncologist wanted to start treatment but, after discussing with another of his partners, I de­cided to wait. I also saw a specialist who wanted to go with a autologous stem cell trans­plant. But he said he would be OK if I wanted to wait if no lesions showed on the PET scan (which none did).

I'm now getting my blood work every month. I'm still asymptomatic, and my numbers seem to be getting better (I take curcumin every day and it does seem to be helping).

I'm going to put off treatment as long as possible. Some exciting clinical trials are in the works and I think waiting is best option for me right now.

God Bless.

[Jason H]

Re: What probability of progression justifies treating SMM?

by Jason H on Mon Mar 02, 2015 4:34 pm

I have been struggling with this question for the last 5 1/2 years, as I was diagnosed with smoldering myeloma in September 2009 and soon discovered that I was "high risk" and had a 50% chance of progression to "active" myeloma within 2 years.

Then, about 2 years ago, my FLC ratio went above 100, which puts me in the "ultra high risk" category, leading many oncologists to recommend treatment. However, I have been putting my trust in specialists at UAMS in Little Rock and at Dana-Farber in Boston, who have concluded (albeit for different reasons) that in my case it continues to make sense (for now) for me to continue to "watch and wait" while being closely monitored for any signs of kidney, bone damage, anemia, etc.

The key reasons:

1. My protein numbers and FLC ratio, although very high, have also remained relatively stable over time;
2. My gene expression profile shows that rapid progression is not likely
3. There is no convincing evidence that early treatment of smoldering myeloma improves overall survival; and
4. If I wait even a year or two treatments, may be more effective and less toxic than the current options.

This approach has appealed to me because my quality of life without treatment has been excellent (exercising daily, traveling extensively, and working full time) and (in my opinion) is guaranteed to be diminished in one way or another once treatment commences.

Of course "watching and waiting" is mentally and emotionally exhausting, but the remedies for that are trying not to worry, appreciating every day, and being grateful for all this time I've enjoyed without chemo.

Caveat - I have been receiving quarterly Zometa since June 2010 due to osteopenia and now because the doctors think that it may have an anti-myeloma as well as a bone-strengthening effect. Also, I've been taking curcumin (4 grams) daily for about 5 years.