[Blee]

Angst of smoldering myeloma

by Blee on Sun Jan 26, 2014 7:09 pm

Hello.

After stumbling on a Beacon forum, I have found you to be a lifeline—a thoughtful, intellectually sophisticated, and nurturing community. The recent thread with lizziec compelled me to leave the comfort of anonymity to write my first internet post.

Since Oct 2013, I have lived the angst of smoldering multiple myeloma. Slammed from healthy to MGUS to multiple myeloma, then settling to “cusp of high risk SMM”, with no consensus as to starting aggressive treatment vs. close observation. I continue to grapple with this uncertainty and the fear that I will make the wrong decision.

My numbers are: IgG lambda, M-Protein 1.3-1.5. Plasma Cell 40%. FLC Ratio 70-100 with lambda 700-850. No CRAB. PET/CT no hot spots, but extensive mottling and tiny cortical irregularities on CT. Normal FISH. Osteopenia on Dexa.

I’ve pored over the recent ASH literature, including numerous links provided by Multibilly, Dana H, and CherylG, as well as Beacon Staff (you are all terrific !!), and would appreciate hearing from any and all of you.

Thanks!!

[TerryH]

Re: Angst of smoldering myeloma

by TerryH on Mon Jan 27, 2014 12:19 am

Congratulations, Blee, on your first Internet posting! I think it's great that you're reaching out for some support and advice, and also that you've been taking the time to learn from the other postings already here in the forum.

I have a couple of thoughts and suggestions about your situation.

First, how have your lab results been trending? Has your M-spike been relatively constant, for example, or does it seem to be changing over time? What about your other lab results, such as your calcium levels or hemoglobin values?

Second, if you haven't already done so, you may want to check out this forum thread. It may help you in terms of clarifying what the existing classification systems are for "risk" when it comes to smoldering myeloma:

https://myelomabeacon.org/forum/formal-risk-of-progression-classification-for-smoldering-multiple-myeloma-t1542.html

Finally, because there is a lot of research going on these days related to smoldering myeloma, you should check out the Beacon's articles on the subject, which you can find here:

https://myelomabeacon.org/tag/smoldering-multiple-myeloma/

(I know you may have read a lot of these articles already. However, I just wanted to make sure you were aware of this list.)

I guess I'm also wondering what exactly the questions are that you have for everyone here in the forum. Is the main question whether or not you should pursue treatment of your smoldering myeloma?

[Blee]

Re: Angst of smoldering myeloma

by Blee on Mon Jan 27, 2014 3:22 am

TerryH - Appreciate your thoughtful response and validating my first posting! Thank you!

My labs (including calcium and hemoglobin) have luckily been all stable, with no trending. However, my plasma cell % and markedly high FLC ratio put me at the cusp of high or ultra high risk smoldering myeloma. I've had a range of medical opinions on whether to start aggressive treatment now or to wait and observe.

This has been so confusing and I feel like my head spins back and forth with each consult. I don't know how to decide.

My questions to the forum: I am wondering about the criteria are for defining high risk smoldering myeloma and the subsequent need for early treatment.

If you are comfortable, could you please share your experiences with smoldering myeloma and how long before progression to active multiple myeloma? How did you decide whether to start treatment or hold off?

Thanks so very much!!

[Multibilly]

Re: Angst of smoldering myeloma

by Multibilly on Mon Jan 27, 2014 9:08 am

Hi Blee,

Sorry to see you have to come aboard...but welcome nonetheless.

To be clear, I'm intermediate risk SMM based on the Mayo criteria and I currently have good cytogenetics. So I haven't had to personally deal with your high-risk situation yet. But I've certainly thought about this situation in the event my disease should progress further.

See my earlier post to Lizzie. In your case, your only option for treatment may be a trial as your insurance may not cover you until you are symptomatic. So, this may automatically limit your options depending on your insurance company's policy regarding SMM.

It is certainly tough to decide if you want to pursue a trial or not. In the situation of smoldering myeloma, you are needing to make a leap of faith on what will be the best route to go (wait or treat early). It's not like you are R/R and have exhausted all your options and are grasping at a trial that could immediately save your life. Instead, you are "relatively" healthy and hoping that early treatment may nip the disease entirely in the bud, or delay its onset , while hopefully providing you with longer survival overall in either case. But what about the potential downsides that I outlined earlier in Lizzie's thread?

One approach to trying to make a choice would be to talk to a number of specialists with different treatment philosophies and then put your faith in the one doc or researcher who you trust the most. I've talked to a number of specialists (whom I all respect). But, I have one person in particular that I've designated as my primary "go-to" doc for those tough situations that may require a leap of faith in the future.

Another approach could be to engage in the trial and then bet that you will be adequately covered by all the future drugs in the pipeline, should you later progress and you find that you've compromised your body's ability to take advantage of a specific drug used in the trial. There is more data that is surfacing that would suggest that a deeper upfront response can result in longer OS.

I think there is merit in trying to achieve a deeper response upfront via drug treatment (I'm personally not a fan of transplants, except as salvage therapy) as long as you think through what your drug choices will be down the line should you become R/R. It always concerns me when I hear of folks throwing the kitchen sink at this disease in the early stages without thinking through what they will do if they should become R/R. You need to balance the goal of deep response with the judicious use of drugs. All the while, you need to be doing this with an eye to your future treatment choices 5, 10, 20 and many more years from now.

Obviously, a third choice would be to wait till the first sign that you are symptomatic and then treat at that time.

One other thing to consider is just what kind of decision maker you are. I'm one of those types of individuals that likes to talk to a wide variety of specialists, researchers and seasoned patients. I collect all their inputs and then distill my own choice from these inputs after weighing all the options. For some folks, this can lead to "analysis paralysis" and just make them unable to formulate a choice in the end. You need to ask yourself just what kind of person you are in this regard.

There really is no perfect answer given the state of the data that is out there. In the end, it really does require a leap of faith on your part.

I assume you have looked at some of of the more recent posts re Dr. Landgren's efforts?

https://myelomabeacon.org/docs/ash2013/es1.pdf
https://myelomabeacon.org/news/2013/06/28/blueprint-multiple-myeloma-cure/

[Blee]

Re: Angst of smoldering myeloma

by Blee on Mon Jan 27, 2014 2:08 pm

Thanks so much Multibilly!

Trying to gather more information (and courage) to take that leap of faith. I've pored through abstract data from specialists, but hearing from real actual people is so much more meaningful.

[inquisitive]

Re: Angst of smoldering myeloma

by inquisitive on Mon Jan 27, 2014 2:38 pm

Multi,

May I ask why you are not in favor of SCT?

Thanks,
Inquisitive

[Multibilly]

Re: Angst of smoldering myeloma

by Multibilly on Mon Jan 27, 2014 5:41 pm

You can find my earlier reply to the SCT question here. Note that I've since lightened up on the subject of treating high risk SMM and I would likely further explore an early drug treatment trial if I were to advance to that stage. However, my views on SCT remain pretty much the same. If anything, my views on SCT are even more firm than what I first posted here.

https://myelomabeacon.org/forum/stem-cell-transplant-why-or-why-not-t2432.html

Also remember that an autologous SCT is anything but a transplant. The designation of that procedure as a transplant is a complete misnomer; no "transplant" actually occurs in an autologous transplant as it does in an allo transplant (which has its own set of significant issues and risks).

As I advise all new patients, the best thing you can do to get a balanced view of your choices is to chat with a variety of different specialists, both affiliated and not affiliated with transplant centers.

Having said all this, I want to underscore that everyone's situation is different and everyone needs to make their own choice. As such, I completely respect those that opt for the transplant route.