Thread by @HadidiSamer

#mmsm How do I treat smoldering myeloma?

Observation

How do I treat “high risk” smoldering myeloma?

Observation

Why don’t I enroll on most clinical trials of smoldering myeloma?

Because they assume that treatment (active control arm) is beneficial

🧵

In clinic, my consultation for smoldering myeloma takes a long time to go over details.

Patient must have completed comprehensive workup including advanced imaging

I yet to have a patient telling me they want a treatment after discussion

Patients appreciate uncertainty

Since we treat many patients, I see many smoldering myeloma pts who already started ttt because of oncologist thinking they will help pts and that some in the field are pushing hard to make this “standard of care”, which is not

Few observations👇

🛑Some pts are started on ttt with incomplete workup

🛑some pts with MGUS/low risk/intermediate risk smoldering were started on ttt and called high risk

🛑some pts who started on ttt ended up with bad complications related to ttt

🛑most pts misunderstood efficay of ttt
…

We got the denominator (how common is smoldering myeloma) wrong in the US

@iStopMM showed us that smoldering myeloma is way more common than what we thought

https://twitter.com/HadidiSamer/status/1622775682924179462

The 2 recent trials presented at #ASH22 that were presented as a good evidence to start treatment are actually the exact opposite

Starting early ttt didn’t prevent the worst outcome (one example is having plasma cell leukemia after starting ttt)

https://twitter.com/hadidisamer/status/1601170628899323904

ASCENT trial failed to achieve primary endpoint though presented as a success👇

https://twitter.com/HadidiSamer/status/1602631385071902720

GEM-CESAR resulted in significant number of deaths 👇

With more follow up (if more follow up is done) we will see more issues

https://twitter.com/hadidisamer/status/1601616279320006659

What is the “innovation” of smoldering myeloma in trials nowadays ?

Using some myeloma ttt early on a single arm fashion!

Heartbreaking to see too many single arm studies that does not help pts nor the field

https://twitter.com/hadidisamer/status/1609730975948308480

It is sad to see pushing for treatment with no solid grounds.

The studies used to support this arguments suffer major issues and didn’t provide important details that matter to pts and oncologists

We suffer censoring in the field of myeloma. Censoring happens at many levels

I emailed one journal editor to say that one of the articles written supporting treatment of smoldering myeloma required a counterpoint article. My request was rejected

What we do in our institution?

We have a prospective observational study that we enrolled patients on for many years and we are working at the data to publish it

We follow pts for long time and comprehensively

Our basic researchers work hard to better understand biology

Why does it take long to publish this?

We believe in long follow up duration to better inform all of us

I actually write my own papers: no medical writer 😅

I also take care of pts , this is my priority

My big concern is that we are spending many $$ and trials on smoldering myeloma while we have minimal/no trials on pts in highest need: plasma cell leukaemia, high risk myeloma, non-secretory myeloma…

And we believe in censoring everybody who does not agree with us

So bottom line:

Treating smoldering myeloma is observation until we know more

Thank you

End 🧵