MGUS with Polycythemia Vera (PV)

@stljack, welcome. Fellow members like @pamdg @pennyhedgecoth @michael11750 @tlsantin @hope19 @atir @clarissa37 @chadknudson @apr931 @mwear can share more of their experiences with polycythemia vera (PV).

You can read more in this related discussion here:
– Polycythemia Vera: Just been diagnosed https://connect.mayoclinic.org/discussion/polycythemia-vera-1/

Jack, What was the result of your biopsy? Is treatment being considered?

Finally received the results of my BMB. Polycythemia Vera was confirmed. Additionally, my MGUS has progressed. My plasma cells have increased to 10-15% & my kappa/lambda light chain ratio is 0.05. M-spike is 2.5. I interpret this as intermediate risk smoldering myeloma. I have an appointment with my hematologist this Wednesday to discuss.
My biggest question is how common is it to have PV & MGUS (or SMM) at the same time? I assume it is better to focus on the PV and did have a phlebotomy a week ago (1 unit of blood) before the BMB. Blood tests are scheduled during my upcoming appointment. Thanks for your response.

Don't know the answers to any of your questions. I have SMM too, with an M spike of 5, and but don't have the results of my cuurent labs yet. My major problem is iron deficiency anemia. I was on Methotrexate for a few years for RA and quit. It was making my anemia worse, Had to have a lot of blood transfusions. I hope that you have a really good hematologist. On FB, if you are on it there is a great group for SMM.

I have had MGUS, then smouldering myeloma since 2013 with very small increases. 2 years ago I found out I now have polycythemia vera. I am watch and wait on the myeloma but have labs often and take Hydroxyurea for the pv. Pv is an amyloid problem and myeloma is a myeloid problem, both in bone marrow but unrelated. Aren't we special?

Hi @fishergramma Welcome to Mayo Connect and thank you for sharing your personal experience with MGUS, MM and Polycythemia Vera. Your comment at the end about ‘Aren’t we special?” made me chuckle. I don’t like being that special and I’m sure you don’t either, with bone marrow issues being our claim to fame. 😅
As you can see you’re not alone. We have several members experiencing similar blood disorders so I hope you’ll take the time to look through other discussions that might be of interest to you. Just type in the search box at the top of the page with any of the 3 health topics you have and it will give you a listing of the conversations.
Were you looking for anything in particular that brought you to Connect?

I really want to know if, on a patient portal or health questionnaire, do we mark yes to the cancer section or not?

When filling out a health questionnaire, you will now need to check Yes. Multiple myeloma is a blood cancer. With MM, cancerous plasma cells accumulate in the bone marrow and crowd out healthy blood cells. https://www.mayoclinic.org/diseases-conditions/multiple-myeloma/symptoms-causes/syc-20353378

Polycythemia Vera is another blood cancer that allows the marrow to produce too many red blood cells. Polycythemia vera is a type of blood cancer known as myeloproliferative neoplasm (MPN). This is what our Mayo Clinic website has to say about PV https://www.mayoclinic.org/diseases-conditions/polycythemia-vera/symptoms-causes/syc-20355850

So, unfortunately, the answer is yes. But the positive is, its treatable. ☺️

Question… when one crosses from MGUS to smoldering MM one is also immunocompromised, are we not? For me that was important to know for my own assessment of how much COVID risk I would be willing to take.
Is that correct? Not there and hope not to be but curious.

You’re correct, @pmm. Our bone marrow is the heart of our immune system…the blood cell manufacturing site. With any blood cancer our immune system has been compromised, it’s not as robust, so it puts us at a higher risk for all infections and illnesses. Covid being one of them because it’s so new. We just statically don’t have enough info on what it does to our bodies and how well the vaccinations have set up our weakened immune systems to respond when we’re exposed.

Fortunately MGUS is generally slow to develop but it’s always good to take those extra precautions to avoid Covid. That one is still so unpredictable in any setting.

I am definitely cautious. The medical facilities here have relaxed precautions a lot. Masks are optional. Go figure.
Thanks.