MonoclonalGammopathyof Undetermined Significance Update

[JAB6]

This week I went to a great Myeloma/ MGUS specialist at Moffitt. I was diagnosed with JAK 2 ET and MGUS mutation in 2023.

The doctor I go to monthly, not ET specialist at Moffitt mentioned I had a protein M spike in blood from MGUS. Protein M spike was .08 and needed to be watched. Went to Moffitt and saw ET specialist then a Multiple Myeloma/MGUS specialist. The MGUS specialist agreed with my monthly hematologist/oncologist . MSpike needed to be watched but doubted it would morph into Multiple Myeloma or smoldering MM. The M spike protein is predicted to increase by 1% a year and a 5% chance it could morph into MM. He also said it was not really so uncommon to have this mutation along with a MPN. This Mutation is generally not a worry unless your MSpike proteins are > 3% and becomes smoldering MM which is the precursor to Multiple Myeloma .Hope this info is helpful for those with the MGUS mutation or those who are interested for general knowledge.

[LIGEBA]

Hi JAB6. I also have MGUS. Was diagnosed 2 years before being diagnosed with ET, then PV. Interesting that your dr. called it a mutation. Mine doesn't show up as a mutation (and have never come across info. that refers to it as one), but I do have the M-spike & am seen by a Multiple Myeloma specialist on a regular basis and get a whole battery of tests every 3 months & full body scan & BMB every year. So many of the symptoms are similar to those of ET/PV. I think that is why dr.s did not find my MPN until I figured it out 2 years later (and that none of the dr.s payed attention to my steady increase in RBCs, PLTs, HCT, etc.). My dr. Says the same as you've reported - slow progression so I do the testing but otherwise don't worry about it.

[JAB6 in reply to LIGEBA]

Hi Ligeba, I could be labeling MGUS as a mutation because it was discovered with the JAK2 mutation. Sorry, it could be my mistake.

Best to you,

Janet

[Brendaf]

MGUS

hi I have chronic neutrophilic leukaemia (CNL) also MGUS can anyone tell me what symptoms may be caused wit this MGUS? Apparently my protein count has risen. I am seeing a MGUS specialist shortly regarding this increase but wandered what others may be suffer with. Thanks

[JAB6]

Hello Brendaf, I have not had any symtoms. Depending on how high your light chains and MSpike are would probably determine your symptoms. I am sure the MGUS Specialist can answer your questions.

Sending best wishes,

Janet

[Digger031145 in reply to JAB6]

Is the M spike what the blood test is called? Are there any other blood tests for MM