Now at 8 weeks out from initiating treatment for PV with Pegasys, things continue to go well. I am still not having any adverse effects at 45mcg/1x-week. Platelets are down to 477, the lowest they have been in quite some time. HCT is slowly creeping up, now at 44.2%. HGB 13.4 and RBC 6.68 also slowly creeping up. LYMPH slowly dropping and remains below range at .83. WBC now low at 3.90. NEUT (the most important WBC) has dropped but is WNL at 2.41. While I would like to see the HCT not rise at all, it is unlikely we will increase my PEG dose with the WBCs dropping off. The LYMPH is not low enough to be a concern and while the NEUTs have dropped significantly, they are also not low enough to be a concern. The plan at this point is to stay at the same PEG dose and monitor again in 4 weeks. I am choosing to wait until the next CBC to see how things go and then do a phlebotomy if the HCT creeps up more.
Like all things MPN, it is all a balancing act. We just have to find the right balance for each of us at any given point in time. My regular hematologist pointed out that it is symptoms that matter, not the numbers on the labs (unless they get too far out of whack). Provided I stay infection-free, then the WBC numbers do not matter all that much. On the whole, I am responding well to the PEG and I am pleased with how it is going. I am going to consult with my Integrative Medicine Specialist regarding strengthening my immune system to prevent infections.
In other news, I saw the nephrologist today. She was not concerned with the minor findings on the renal ultrasound and all of my kidney function labs are looking better. Her assessment is that my kidneys have weakened and just need more hydration to function properly. The plan is to drink more water, be nice to my kidneys, and monitor kidney function going forward (which I need to do anyway due to the PEG). So good news on that front.
More good news – my last MRI of the brain looks good. I am continuing to heal from the surgery and there is no sign of tumor recurrence. I do continue to have occasional minor visual migraines, but the Ubrelvy works really well to control the symptoms. I must say for those of us with migraines that my experience with a CGRP inhibitor has been very positive. All benefit with no side effects at all. My niece who has debilitating migraines has found that the long-acting Ajovy has “transformed my life.” The convergence insufficiency has improved with the Brock Bead exercises, but diplopia remains a problem. I will likely have to have the cataract surgery to fully correct the problem. It is the only surgery I am actually looking forward to. Will see about that later in August.
In even more good news, I just got back from volunteering at Brainy Camp, a Summer camp program run by Children’s Hospital of DC for youth with chromic medical conditions. brainycamps.com/ . This program is the only way most of these kids would ever be able to have an out-of-home summer camp experience like other kids are able to have. I had the chance to do a lot of fun activities with the kids and also taught sessions to transitional young adults about how to advocate for yourself in managing your own medical care. It was a very rewarding experience.
As usual, I have gone on for quite a bit. Thanks to all who were interested enough to read this tome. All the best to all of you all.