MPN (probable ET, possible primary MF), now abnormal lymphocytes. Are these related?

[Murryx]

Background: My husband was diagnosed with an MPN last August. He is Jak2+ and had a bone marrow biopsy indicating 25% scarring in his marrow. He's only 48. They said they will continue doing blood work and maybe a bone marrow biopsy every 5 years to determine what kind he really has, ET or MF.

During the bone marrow biopsy in August, they noticed some lymphocytes were abnormal, but didn't mention it other than the lab print out. In the past 4 months my husband has been very tired and unable to enjoy life as usual. He goes to bed early and still feels exhausted by mid day. Also, for about 4 weeks he was having nightly fevers (getting as high as 40.5C). Primary physician said it was probably a virus.

Current Oncology Visit: During his most recent appointment the oncologist mentioned that his recent blood work showed a much higher level of abnormal lymphocytes. They are repeating the bloodwork this week and again in 6 weeks and we are to go back in 12 weeks to learn more. He mentioned possibly doing a repeat bone marrow biopsy after the 12 week appointment if the levels are still abnormal.

Question: Are these things linked? What could the diagnosis be, ultimately?

Thanks for reading this long post!

[Mazcd Partner MPNVoice]

Hello Murryx, sorry to hear that your husband is not enjoying life as he should, the fatigue can be very debilitating, night sweats are also a symptom of MPNs, all he can do is try and keep cool by wearing natural fibres like cotton, and maybe a fan in the bedroom, also he must drink plenty of fluids to stay hydrated. A good tip for the fatigue is to try and do some exercise, it may sound silly when you are tired and can't get out of bed or off the sofa, but it does help, studies have been done on this by leading experts and even just a short walk can help, you don't need to go to the gym. Have a look at the information on our website mpnvoice.org.uk, there are videos of people talking about how they cope with their side effects as well as real stories, and also some very good videos from leading haematologists. With regards to your query about his lymphocytes, it would be best to wait for the results of the tests and then discuss this with the haematologist, it's a good idea to write down all the questions you have as that way you won't forget to ask something. Let us know how he gets on. Best wishes, Maz

[Murryx in reply to Mazcd]

Hello Maz! He has not been exercising lately. Not even taking walks. I'll try to get him out to do this a couple times each week and see if that makes a difference. Thanks!

[Aime]

Every sympathy to you and your hubby. These symptoms are sometimes hard to cope with.

I'm sorry I'm not a medic so can't answer your questions but just wanted you to know someone was understanding what you are going through and thinking about you both. Kindest regards Aime

PS I know it's easy to say but not to do- try not to worry as I've done this in the past as my imagination ran away with me, even had nightmares, just to find out that results were not as bad as I had feared! In other words I had wasted energy worrying for no good! Xx😺😺

[Murryx in reply to Aime]

Thank you for your reply. This is excellent advice. I do tend to worry an over analyze. I'm expecting our fourth child and I worry he won't be here to see her grow up. I'll try to distract myself until we get the results.

[Aime]

Hi Murrayx, congratulations on number 4 on the way. You're brave, I stopped at 2.

We are all human and worry especially when we're mums (and now a gran) Take care and keep in touch. Kindest regards Aime xx😺😺