Was diagnosed in June 23 with ET with platelets presently on high side of normal. I succumbed to 500mg of HU 4 days a week . I am not a likely candidate for an inf drugs and looks like Bomedemstat will not be approved until 2028.
I have a local hem/onc and an MPN specialist at Moffitt I see every 6 months. My local hem drops comments like I need to watch these numbers but doesn’t explain why. Instead of quizzing him , I go home and Dr. Google the terminology of what things mean and check this wonderful resource until I go to Moffitt for an explanation.
The last two blood panels showed .11 and last .10 for the protein M Spike which has to do with MUGUS which is part of a Multiple Myeloma diagnosis. I know this is a small amount of M Spike and very slow growing but is there a huge possibility of becoming smoldering Multiple Myeloma?
A am a little concerned and find comfort in asking opinions of the well researched team members on this site. Thanking you in advance!
Best to all,
Janet
Written by
JAB6
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It sounds like you are talking about MGUS (Monoclonal gammopathies). It seems that MGUS is benign but has potential to turn into something more serious like multiple myeloma. hopkinsmedicine.org/health/.... It sounds like this is something that needs to be monitored but not treated. In the context of having a MPN, it seems reasonable to monitor very closely.
I have something unrelated but in a sense similar, the NF1:c5425C>T (p.arg 1809sys) mutation, which causes Neurofibromatosis Type 1. While unrelated to the JAK2 mutation, having the NF1 mutation increases my risk for progression into AML, lymphomas ,and other neoplasms, This is the condition that caused the brain tumor I had resected. The thing I have learned is to not waste time worrying about things that may never happen. I do not ignore the increased risks, rather monitor as needed and carry on with living a good life.
I expect you will become the forum's expert on MGUS + MPN. Please do let us know as we will all benefit from what you learn.
Thank you so very much Hunter! Was hoping for your reply.
What I have found out by Google is 3 is when it could become smoldering and it usually increases by 1% per year if at all. At my appointment with Moffitt I will ask about MGUS and share with the group.
Hi JAB6. I too have MGUS. It was diagnosed about a year before my MPN diagnosis (PV). After having sepsis, I was extremely tired/fatigued and was starting to get bone pain. Also, my calcium level was high. This prompted the dr.s to test my parathyroid levels which were also high. Next my dr. tested my light chains (kappa & lambda) and my kappa light chains were extremely high (and remain so today). This is what started my journey with a hematologist, then ultimately my specialists at the cancer hospital.
I see two different specialists at the same cancer hospital - one for each issue. Both dr.s have said they are unrelated. This surprises me since they both have to do with the bone marrow. Like you, my M-spike remains low and my BMBs show I am below the 5% mark, AND my Myeloma dr. tells me I am stable and nothing to worry about at the moment, so I don't. I do, however, worry about the PV and the potential for blood clots all the time due to no good, definitive answers out there on how to prevent them. By the way, from what I understand, we are very rare. It's quite uncommon to have both MPN and MGUS.
Hopefully you have received more answers by now and are on your way to good treatment plan. Looking forward to any information you gleaned from you dr.'s visit if you care to share.
Thank you for your informative reply. After much reading, I am debating on going to a MGUS dr. at this time. My M Spike was only .10 . I go to an MPN specialist at Moffitt in July and have an appointment with a MGUS specialist that day also. My local hem/onc said it needed to be watched but not a worry at this time. I saw the nurse at Moffitt in Feb. and she said it was a long time since she had dealt with MGUS but set me up with a specialist. May cancel the appt with MGUS specialist at Moffitt until I speak to my MPN specialist to advise me. Will have another test for the MSpike prior to Moffitt appt. If MSpike is still low will decide if I will see MGUS specialist in July. Very undecided.
Hopefully we both have absolutely nothing to worry about as this is very slow growing and seldom leads to MM according to Dr. Google.
Hi there - I stumbled on this post while looking for people with MGUS. Your doctor does need to add immunofixation to your electrophoresis blood test, if that hasn't been done, and the test for free light chains. That is the most basic set of tests needed for MGUS and related disorders.
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