Multiple myeloma: When to treat? When not to treat?

Two years ago I was diagnosed with Stage 1 Multiple Myeloma. I started targeted treatment one week after the diagnosis and tests to confirm. By April my blood number were much improved. Visiting Rochester re: transplant was educational though I do not need this. They told me at Rochester the M. M. was a slow growing form that I might have had for 20 years. Just to maintenance now and I was told I will live many years. The M spike was 3 two years ago and now the phrases is something like barely found and might be from the medications. Vera101, you did not mention your stage or if you had a Monoclonal spike. This is all I will post because our life if very, very busy. I just was curious why your doctor would say wait. Is he/she part of a care team meaning other doctors advising discussing you? If not, I would get a second opinion. Take care.

Hi
Hope you are doing well
Am not sure why your doctor wanted to wait and monitor? Is there anything not clear ? Can I know the plasma cells % ? And whether its MUGUS or others ?
Thanks

Welcome, @vera101. Sometimes when multiple myeloma doesn't cause any symptoms, treatment is not necessary right away. That's when watch and wait will be recommended as a treatment. I actually prefer the term "active surveillance" because it sounds more proactive than just waiting. You will be carefully monitored during this time.

You can read more here from Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/multiple-myeloma/diagnosis-treatment/drc-20353383

Do you have any symptoms at the moment? What led to your getting tested for multiple myeloma? Did your doctor mention that smoldering multiple myeloma?

hello Colleen,
thank you for reaching out to me.this is how i got tested adn then the dignosis:
i have had an autoimmune retinopathy for some years nor.it is sometimes related to reumatoid arthritis.a year ago i was tested for that.no arthritis,but pre-myeloma.in september another blood test,then urine test,then one marrow,pet scan.that is how it was discoveredthe retinopathy causes loss of vision.i am legally blind.i am thinking that these teo conditions might be related.perhaps if i got treated for the MM,my retinopathy might slow down.no,the doctor did not mention that name of the disease.

sorry about the typos,i do not see too good anymore

@vera101 If you are not under the care of a hematologist oncologist, please consider getting an appointment with one. They are the best versed and trained to work with you if you have been diagnosed with multiple myeloma or its precursors MGUS and Smoldering Myeloma.

For me, being on steroids has accelerated my cataract issues. The steroids are part of my myeloma treatment, and is a known possible side effect. So, that might not be what you want!
Ginger

hello Ginger,
yes,i will get an appointmnet in Mayo.so far i was just diagnosed by a hemetologist,NFCS.i had the cataracts removed,and replaced with artificial lenses,so thatwould not be a problem.whatntype of steroid,and how much do you take?thank you. era

@vera101
Welcome to the forum. I am so sorry about your vision problems. One of the most challenging aspects of a blood disorder diagnosis is finding the right physicians to sort out which of our symptoms may be attributable to the M protein in our blood. Getting an accurate diagnosis is the first step.
It sounds as though you plan to go for a thorough workup at the Mayo Clinic. That seems like a good first step.
There are precursor conditions such as MGUS (monoclonal gammopathy of unknown significance) or smoldering multiple myeloma). You need to know exactly what your diagnosis is, then you will be able to sort through treatment options with your medical provider.
Make sure you get a good hematologist/oncologist You need one who will listen to all of your concerns and answer all of your questions.
Write them down before hand. Take someone in the room with you when you talk to the doctor because it’s hard to remember everything when there is so much information.
Even though MGUS is considered to be a benign condition in that it is not cancer, some MGUS patients have conditions such as neuropathy which are likely attributable to the MGUS. Your physicians will have to sort out the cause-effect of your vision impairment and treatment response. It’s maddening to have to wait when you need answers, but since everyone who posts in this forum is diagnostically unique, we can only empathize. This is a good place to find support and encouragement. There are some very fine humans here who are interested in your journey. Let us know how your Mayo visit goes.
Patty

Patty,thank you so much.yes,exactly,i need a doctor who will take real,genuine interest to try and help me.the one who diagnosed me,is not such type.
i am so thankful to all you people who share your experience and knowledge.

@vera101 I take dexamethasone, 12mg once a week. I had cataract surgery on both eyes in July 2023. Both my eye doctor and my oncologist commented that the cataracts were "speeded up" by being on the steroids, and many other mm patients I have spoken to have said the same thing.

I echo what @pmm Patty mentioned to you. And I hope you will let us know if you have more questions or concerns, and let us know about your appointment with Mayo doctors!
Ginger