MPNs - I have so many questions.
Hello, my father(73yo) was dx with MPN -PV in Oct 2024, long story short, my dad has hx of cardiac disease (triple bypass in 2013, stents about 5 years ago), inguinal hernia for about 15+ years. October 2024 went to hospital , thought was having issues getting back hernia back in, also could not urinate (dx with BPH), and platelet count was 1.4million. So no sx for the hernia, did not know that over the years Cardiologist was recommending Nephrology & Hematology (currently stage 3b CKD, and platelets have been in the 600-700's in the past 5 years). Had BMB done and stated iron deficiency PV, so was started on HU 500mg BID, then gradually decreasing it as the platelets were moving in the downward direction, then when got to 500mg SID 6 times a week, became anemic, and then dropped to 500mg 2x/week, and still anemic. The platelets were at a great spot of 200-300. So now take off HU, and see what happens because the HU made him anemic. Obviously things starting coming back up, another BMB was done, no changes, never had issues with iron deficiency, all the tests for that were normal and still are. So determining that he doesn't have PV as the MDs stated and reading on here that he has ET. Now since being off the HU for about 1 month, platelets are up to 850, anemia is basically resolved, Hematologist wants to switch to Anagrelide therapy, but wants to confirm with Cardiologist first. Plan was to get his level to stabilize so we can get the hernia fixed. So now we are back at square one to treatment. Obviously my dad has more then a trifecta effect going on, so was the anemia also due to his CKD, probably, because even as his WBCs and Platelets are climbing his RBCs are still slightly below the "normal" end, is switching going to play nice with him still being on baby aspirin? And how much is this medication going to work on his kidneys? The increase of the platelets are going to cause his K+ levels to increase as well, therefore, he is at risk for the heart to stop too. So many variables, is there light at the end of the tunnel? Plus my dad does not really understand. And as many of the members were stating the doctors say that it is a disorder not cancer, so I explained it to my family members the same, but it is in fact cancer due to the genetic mutation? Sorry for the long winded, not so short, run on sentences. But I appreciate any feedback and just that I found this forum by mistake from " Dr Google".
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@mydadhas2024, you are asking a lot of great questions. I know this can be very confusing and confirming a diagnosis a long journey. It sounds like your dad's doctors are being very thorough. It is good that they are mindful of his other health conditions and how treatment may affect his heart and/or kidneys. Managing multiple conditions like a blood disorder and CKD is something familiar to several members, including @gingerw.
You may appreciate some of these related discussions:
- JAK2 and Heart Disease https://connect.mayoclinic.org/discussion/jak2-and-heart-disease/
- I have JAK2 ET and MPN: Anyone else have these symptoms? https://connect.mayoclinic.org/discussion/jak2-et-and-mpn-symptomscause/
- MDS (myelodysplastic syndrome): When to start treatment? https://connect.mayoclinic.org/discussion/mds-when-to-start-treatment/
- Anagrelide: Do you switch? How to cover costs? https://connect.mayoclinic.org/discussion/anagrelide/
- Is Essential Thrombocythemia a blood disease or cancer? https://connect.mayoclinic.org/discussion/is-essential-thrombocythemia-a-blood-disease-or-cancer/
Any update on your father's diagnosis and treatment?
My husband was diagnosed with ET and MF 25+years ago at age 40. He didn't start taking Anegrelide until his platelets reached 1200/1.2 million they used to call it. He was treated at the Dana Farber in Boston until the move to Florida. He was recently diagnosed with a heart issue that he was born with (no one knew) and CKD 3a. He has started moving toward a plant based diet, with some chicken/fish/dairy. He is doing well, and your father can do well too. My Best. K.
@mydadhas2024, I hope you saw the helpful post from @kathymiami.
How is your dad doing?