Paula, @A MyMyelomaTeam Member

It’s been two years for me since diagnosis and I’m still stable, albeit, my basic MM labs, according to Dr. Landgren (although I don’t feel normal). My labs and mspike fluctuated from .5 at diagnosis to .3 in 2024 to .4, .5 in March and April 2026 then, July, my last lab, back to .4 but Dr. Landgren says I’m still stable, not progressing via the MM labs anyway but again, with this other health issue, I don’t feel normal.

However, I’m trying to take the positive road that the mri and eeg were normal and Landgren and Martin said this other health issue doesn’t appear to be linked to myeloma…so that’s good news I can use.

How about you, you’re MM labs are stable, correct? I want to know how u are doing.

How do you feel bec although my labs appear to be stable I don’t feel normal, due to the dizzy vestibular issue. The ear ringing I can handle better than the dizzy spells, those are what affect me the most bec it affects my focus. It’s not as bad as it was at first but it’s still there, it’s like i can feel it inside my head, like a little vibration feeling, that must be the vestibular issue, which apparently deals w a nerve and balance issue although I don’t lose my balance.

Sometimes I feel good but it is more the exception than the rule.

It causes me to lose focus, concentration, brain fog too and remember when I said, my get up and go got up and left…it really did…I still feel that way but my MM labs are stable, (except for the kidney 840 but I saw where the nephrologist said in their notes, that is still stable bec it’s not 3200, hmmm, labs are just one piece of the health pie 🥧. I know the kidneys are going to be my elephant 🐘 on the room but like u said, 840 better than 3200 for now. I have to decide if I’m going to take one of those meds to reduce total protein but I guess that will come at my next labs.

So, I have kidney involvement and now this other vestibular or neurological balance issue (dizzy/ear ringing issue) to deal with), which is a real challenge, I’ve never felt this way before. It seems to getbetter, then bam, the dizzzy, little vibration feeling or spell comes back.

I pray every day that this is a phase that will pass, the ent doc referred me back to neurologist but they haven’t made me an appointment yet to see Dr. Martin, I’m starting to think they don’t what to do, since the mri and eeg were normal. The AI says vestibular migraine treatment can include some kind of physical therapy where they retrain the balance nerves in your brian or ear. I’m not even positive that diagnosis is correct, given the other symptoms and brain 🧠 fog. I’m not sure, hope Dr. Martin schedules me soon but his nurse said it’s an elusive diagnois from ENT bec their mri and eeg were normal, o brother.

All that said, I’m still blessed to be here with Daisy and have friends like you.

So, like u said, if you haven’t progressed in first 2 years w SMM, that is good news. Let’s go with that 🌹 😊.

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A MyMyelo...

Salli, I like what AI says.
Staying stable with smoldering multiple myeloma for two years without advancing is a very common and positive clinical pattern. Many people with low- or intermediate-risk smoldering myeloma remain stable for years, and a significant portion may never progress to active cancer. Standard care focuses on active monitoring rather than immediate treatment. [1, 2, 3, 4]

I had smoldering for 9 years and was never told that.?? Maybe he is talking of all the new meds that have
been approved for MM? So many new drugs are available now.

@A MyMyelomaTeam Member,
I hate meds, but I don’t think I could stand being dizzy or have ear ringing for too long. Did you see the iron supplement picture I sent you? My friend said it stopped her dizziness. Either try that, or the kidney meds to remove protein. Try a low dose and hopefully it will work and you won’t have side effects. I’m sorry you are having these symptoms. So many on this site had no choice, since they were diagnosed with MM out of the blue. We are riding the fence. I don’t know if we will fall on the wrong side! Only time will tell. Are you still taking the Astaxanthin? If not, I don’t think that was the cause. It just might help actually. If you have the funds, I would make an appointment with a Naturopath. They know so much more than doctors about diet and supplements. I’m doing okay. My back hurts, my hip hurts, I can only walk one block, but I am still independent. I don’t feel normal, and I feel like I am getting worse. Today I had some energy, so I got some cleaning done. Today was also the Assumption of Mary, where Mary was taken up to heaven by God. I went to Mass, prayed a Rosary and the Divine Mercy Chaplet. It felt good.🌷🌈💕🌷🙏🏻✝️🕊️
Paula🌹

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A MyMyelo...