Diagnosed with MGUS and CHIP with M spike

CHIP (clonal hematopoiesis of indeterminate potential) is a type of excess blood cell production by the bone marrow caused by a genetic mutation in the DNA, either inherited or acquired later related to aging. It’s similar to MGUS ( monoclonal gammopathy of undetermined significance) which causes the M spike reflectinng abnormal proteins produced by plasma cells that form antibodies. MGUS is common and CHIP is a rather new kid on the block. The Dana Farber organization is doing a lot of research on CHIP and you can find a good article at blog.dana-farber.org on CHIP. I am guessing that having both is uncommon. Both conditions require monitoring of blood counts every 3-6 months and both are associated with increased inflammation. Both are precursors to blood cancers but at a very low incidence. Antiplatelet therapymay be warranted if the overproduction is of red cells, making the blood thicker and more likely to clot.
The good news is that no treatment is needed as long as blood counts remain stable.

@mattymatilda, I hope you saw the helpful post from @slkanowitz. How are you doing? What recommendations has your hematologist recommended for you? Next steps?

Hi. No, I did not see a reply and I’m not sure how to find it.

Hello, thank you so much for your reply. You answered some of my questions. Yes, my hematologist said I had chip and MGUS. I was also diagnosed with polycythemia and chronic anemia 2 years ago. I’m currently undergoing injection treatment for SLE, which is lupus. So much going on.
my hematologist referred me to another hematologist oncologist. I’m nervous about going to my appointment on Friday. He’s located in another city about 40 miles from me. Thank you for your input. I appreciate anyone sharing their experiences or knowledge with me.

Yes, I forgot to mention my hematocrit is always high. I have had a couple phlebotomies thus far.

@mattymatilda
Yes, starting over with a new physician is always stressful. I always make a list of my questions to ask because otherwise they escape me until I am driving home.
Will you let me know how your appointment goes tomorrow?

Hi. New Dr. canceled this am. He just received my rheumatology records I guess. I’ve lost sleep waiting for the appointment today, so I’m very disappointed it was canceled. They said they’d call me back to reschedule. I will keep you posted. Thanks for asking

@mattymatilda
Oh no! How frustrating for you. I hope that they can get a new appointment scheduled for you. Be the squeaky wheel. Do let me know, please.

Hello again. I had my appointment with the new hematologist. I didn’t realize he worked with the same practice just in a different location. I am very disappointed. He said I should not worry about anything because the M spike at .56 is very low. He was also not concerned about the out of range IGM. He confirmed the chip diagnosis, but said that is also nothing to be concerned about. I have not reached retirement age of 62. He basically said word for Word, what my other hematologist said that all of these test results are due to me being a former smoker and being dehydrated. He told me I only need to be tested once per year on a CBC. I don’t feel comfortable with that. He did not know that I Have SLE and that it has already damaged some of my organs and that I have polycythemia and chronic anemia. He renamed the polycythemia erythrocytosis???? He said I do not have Anemia anymore???? I know this is because when my hematocrit is high, right now now at 49.2, It makes my iron go up because I have too much blood. When I had my two surgeries last year, my hematocrit went down to 36 And my Iron plummeted to 11 but that was due to loss of blood. My hematocrit quickly shot back up to 44 to 49. The bone marrow biopsy I had three years ago showed “ Rare large platelets…”. My old Hematologist said that those Platelets are long dead because they only live for three months so everything’s fine in my bone marrow. Not sure what to do at this point. I guess wait until I have another blood test in one year????? Would love to hear anyone’s advice or thoughts. Thanks.

@mattymatilda
I’m so sorry that your new physician visit was not what you hoped for. On one hand, it’s reassuring to get positive feedback about your health, but if you feel that he’s just not paying attention to all the data, that’s very discouraging.
Are you satisfied with the plan to retest in a year or are you considering other options?