Update – PV, lung carcinoid tumor and bone marrow abnormalities

[Imkerin]

Hello everyone, here’s an update on my post earlier this year asking about the likelihood of a link between the onset of PV and a lung carcinoid (tumor) obstructing the airway. The answer from different sources (including MPN team) seemed to be there was no link. However, post-surgery (tumor out and unfortunately the left lung went with it) my MPN team are now suggesting a possible link between this type of tumor and PV. At the next blood test they will check for any Allelle burden changes.

During the course of investigations for the lung carcinoid one of the incidental findings was multiple lesions in my right humorous bone. A consultation with a National Orthopaedic Hospital concluded these were ‘non aggressive lesions such as focal nodular marrow hyperplasia’. I was very, very relieved to hear they were not malignant. My MPN team consider there is no link with PV/MPNs and these changes in the bone marrow, which I find surprising.

Is there anybody on the forum with any experience of these bone marrow changes and/or more information?

I’m planning on attending the London MPN event 5th November (stamina allowing). I would be very interested in linking up with anyone also under the care of the MPN team at UCLH.

[hunter5582]

Sorry to hear you lost the entire left lung. Glad to hear you have recovered from the surgery.

The MPNs are associated with a variety of secondary neoplasms. That is the nature of the deregulation of the JAK-STAT pathway. I also have a nodule (benign) on my left lung. Fortunately it is not an issue due to its small size and location. It would be no surprise that there could be a link between the PV and the lung carcinoid tumor. It is a bit surprising to hear that the MPN care team would think there is not a link to the anomaly in your bone marrow. Generalized marrow hyperplasia is a feature of PV. If the lesion you have in the marrow is focal nodular hyperplasia, it seems that it could just be an uncommon manifestation of the hyperplasia typically seen in PV. Most curious.

Perhaps you will learn more in time. Please do let us know what you learn and how you get on.

[Imkerin in reply to hunter5582]

Thank you Hunter. I have a consult with the MPN team at the end of this month. I will share any new learning.