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SMM: What's a reasonable monitoring schedule?
My doctor has given me a zero on the gold standard risk assessment for progression in SMM. I know low risk is not no risk, but if he wants to call me low risk I don't want the same level of observation that a high risk or even an intermediate risk patient gets. Where do I draw the line? Or, more specifically, if nothing has changed since July when I followup in October where can I draw the line to give myself the most distance I can while I still don't have any symptoms that a doctor will treat?
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It isn’t unreasonable, if you’re at a very low risk for a blood condition to progress, to be at 6 - 12 month intervals. If you’re uncomfortable with annual visits, then ask for 6 month labs. Doctors watch for trends in numbers over several visits. If blood numbers appear stable, even if a little elevated or below normal for a period of time, as long as they aren’t trending up or down, it’s usually not cause for concern. (A zero rating is excellent, by the way)
Certainly, if you have new symptoms or ‘feeling’ something is off, then you can call for an earlier lab appointment. The lab results would then be reviewed and if needed you’d get a consultation.
If you have been on 3 mo intervals now, you might consider 6 months. Have to discussed this with your hematologist?
I'm fine with annual visits, especially if he's sure I'm low risk. But he wants 3 months, which seems like a high risk schedule to me. And, given that there aren't any known triggers for progression, catching it before it causes any damage seems to involve more luck than skill anyway. I just think I have better things to do with my time than to go in to have someone explain labs to me that I already understand.
@kansasjayhawk
You need to have a discussion with your doctor about the interval between checkups. Find out the reason behind the 3 month interval. No one here can tell you what is right for you, only what their doctor has decided for them. Personally, I would rather go too often than not often enough. You and your doctor must decide what is best for you.
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2 Reactions@kansasjayhawk, I’m sitting at MGUS, with my “numbers” stable and low. I was diagnosed five years ago and did quarterly appointments for the first two years. I’m now seeing my oncologist every 6 months. My appointments do seem a little redundant.
Yay! Whew! Glad to see ya, doc, see you at Christmas time.
Since my MGUS diagnosis was purely incidental to an injury, I had no idea that pesky paraprotein was hanging out in my body. So I’m good going in twice a year for a check in. It’s painless…well except that my hematologist/oncologist is fairly stuffy and humorless. I view it as preventative maintenance. If my MGUS ramps up to Smoldering or MM, I want to know and want to be able to take advantage of all the good stuff that is coming out of research in the way of treatment.
That’s my plan, anyway. I hope that a discussion with your provider will offer an option that works for you.
Do you get anxious related to your appointments if I can ask?
Patty
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1 Reaction@pmm I don't mind the labwork per se, but driving an hour for a 10 minute appointment to go over numbers I can see online doesn't seem like a good use of my time. I just think if he's going to use 20 2 20 to call this low risk it can be treated as low risk.
@kansasjayhawk
I suggest if you can do the bloodwork locally, ask him for at least changing to online meetings so you don't waste the 2 hours of travel time and can just spend the 10 minutes. That is what I do with Mayo, but will have to fly in for some appointments (currently here for treatment and did preliminary meetings online).
Lorie
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