Just had a tele-medicine visit with my new MPN Specialist at Johns Hopkins. the renowned Dr. Spivak has decided to cut back after 47 years in practice. The new doc, Dr. Braunstein was trained by Dr. S and seems like a great doc. He recommends continuing my current treatment regimen for JAK2+ PV age 65 - phlebotomy-only with no cytoreduction and no aspirin. Not a typical recommendation I know, but it is working for me. 1 year on this regimen and doing well. No thrombosis and the excess hemorrhaging has stopped since I stopped the aspirin. My erythrocytes are gradually creeping back up to normal (they over-phlebotomized me). It has actually been a year since my last phlebotomy and my erythrocytes are still low, but HCT is up to 42%. Platelets continue to cycle between low 500s and mid 700s. Leukocytes are WNL, though Basophils occasionally edge over on the high side. All-in-all, treatment for the PV is on track. I will resume a more cautious phlebotomy schedule after HCT = 45%.
More good news - recovery from the Brain Surgery last year continues to go well. They have backed off on the monitoring to every 6 months. It is hopeful that the surgery was curative. The tumor appears to be gone, No sign of recurrence yet. Due to the Neurofibromatosis type 1, it likely will recur someday, but that is a problem for another day. Actually not sweating it.
More good news - heart surgery-atrial tachycardia issues continue to do well. The surgery did its job. Might get some sinus tachycardia every once in a great while, but that is not big deal. Am at risk for A-Fib in the future, but again a problem for another day. Not something I sweat.
Not so good news - the docs found some kind of tumor on my mandible and possible two more masses. Likely an intraosseous neurofibroma, but we don't know for sure. It is affecting my teeth, so will have to get it out. Have to wait due to COVID situation. Will get to it as soon as I can. The surgery will throw me into reactive thrombocytosis, but we will deal. Compared to brain and heart surgery - not a big deal.
Not so good news - I further damaged a bad knee where I had previous surgery. Complex meniscal tear with 2 chondromalacias. Doc wants to do a meniscectomy. I am not so eager to cut away more meniscus and just kick the problem down the road. Will have to do something, but want to pursue something that will actually fix the problem and protect the knee. Surgery is likely, but I want to actually fix it. Another thing that may trigger reactive thrombocytosis (depending on the surgery), but will deal with it as needed. For now I am just doing PT. Also hurt my shoulder. More PT!
Not so good news - cataracts are progressing to the point that I qualify for the surgery. They seem to be causing some convergence insufficiency in my vision. Docs want to rule out a neurological cause due to the brain surgery, but I think it is just my aging eyeballs. Had to put off sorting it out due to COVID. Will get it taken care of ASAP. This is actually the only surgery I am looking forward to. Better vision and no reactive thrombocytosis. May actually treat this surgery as a reward for doing the others. It is all in how you look at it.
So a mix of good and bad news, but on the whole I am doing quite well. I am out and about as social distancing permits - a bit gimpier than usual, but still getting around. Looking forward to the nice weather before it gets too hot. Hoping the restrictions will lift (with relative safety) before too long. I know COVID is not just going away, so we will just have to find a way to carry on despite the virus. Do let's all remember to be thankful to the medical care providers who have been there for us despite the risks. I have a great care team who have been there throughout all this mess. They are a real blessing!
So all of the best to all of my MPN Brother and Sisters. I am glad and blessed to have you all in my MPN family. We are truly stronger together.