Just had my follow up MRI and it looks good. The brain is continuing to heal from the tumor/surgery and that recovery is looking good. I have not had any of the visual issues since September. I am hopeful that it was just a passing phase and that it will not recur. If it does, I have a plan in place. If I get even one more visual migraine, i will initiate a CGRP Inhibitor. If I get another episode of hallucinatory palinopsia I may reluctantly have to initiate an anti-seizure med. I would really rather not do the latter due the the side effects. Hoping for the best!
I also met with the orthoptist to be evaluated for prisms for the convergence insufficiency. Somewhat to my surprise he recommended trying some exercises first. Using something called a Brock String. He thinks I may be able to correct this without the prisms. It is worth a try, but is a real pain as it is 30 minutes a day just exercising my eyeballs. VERY boring. I am going to try to crank some great tunes and make the best of it.
On the MPN side, just had another spike to 900K on the platelets. I do seem to be hovering in the 700s these days with upward spikes. Used to be more in the 500 - 700 range. We have ruled out progression of the JAK allele burden and I am negative for all of the non-driver mutations except for the NF1, which we already knew about. I just had a massive pile of blood work done by endocrinology and integrative Med doc. It all actually looks pretty good except for the platelets. Will run it by all the docs and see what is what. At this point my theory is that this is the result of long-term iron deficiency from the phlebotomies. Does a great job controlling the erythrocytosis, but perhaps not so good for the thrombocytosis . We will get it sorted out one way or another.
I am really hoping that PTG-300 will get approved by the FDA here in the USA soon. I would like to give it a try to see if it will work better than the phlebotomy-only approach. Likewise approval for Besremi. I imagine at some point I will opt for that as well. Of coarse, in the near-term, approval for the COVID vaccines would be really great. I will be getting my vaccine as soon as it is available.
Most other issues are on hold until all the COVID craziness settles down. Maybe will do something about the knee and cataracts by Spring.
Wishing you all good tidings as we head into the next set of holidays. All the best to all of y'all.
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hunter5582
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Your studied approach is an inspiration........ Something to observe and learn ..... Eventually it is really all about the mind pitted against the body isn’t it ? Kudos to your attitude ......... 👏🏻👏🏻👏🏻
The phlebotomy related thrombocytosis sounds very likely. 900K can give visual migraine too if you don't take aspirin or something else to suppress platelet aggregation. I had these migraines (scotomas) on lower counts (600-700).
Hey Hunter, , great news on healing front, , what a relief that must be. You sure have alot going on and must be mentally strong to deal with it. Lesser folk might have folded. It's only when faced with adversity you find out how mentally strong you really are. I know I did.
Just on the brock string I would suggest you do your exercises out of the way of others owise you'll all be falling about laughing as with your finger you pin a 10 feet length of string with beads on from your nose tip. 😃
Seriously I hope it helps with musical accompanyment as you say but I would choose something soothing to set the mood. I'm not sure I could keep still with banging tunes on.
Planning to start with some Seasonal tunes. Then maybe some Glen Miller or other Big Band tunes. Just for variety, some Allison Kraus or other bluegrass. Anything to deal with the mind numbing boredom. I have the same problem with other forms of physical exercise. I would rather go split wood for 2 hours than exercise for 30 minutes. Oh well - will just have to do my best.
Good choices i dont mind a bit of bluegrass myself. , wont be Bachs 'Air on a G String' then. Like you im not one for stationery fype exercise as it bores me. I'm sure you'll take it in your stride. ,Be interested to know whether it works. . . . , . .
Hi, Hunter, Glad to hear your MRI showed improvement. I’ve never heard of the eye exercises you are talking about, but I hope it works. Your determination and your proactive approach to your health is an inspiration. If anyone can get things sorted out, it’s you. Take care and thanks for the update.
Thanks for your kind words. I learned the hard way how important it is to stay positive, openly address your stress/anxiety, and be very assertive in managing your own care. Despite the challenges, I am in a way better place now than when I started the more serious health journey. Support from my MPN Family on this forum has certainly been a huge help. Thanks to you and everyone on the forum for your support.
Gosh Hunter, you continue to amaze me. Your posts are upbeat, informative and inspiring. How do you manage it all? You are in the USA and as such I imagine you have to rely on your medical insurance. Your recent results must be a huge relief. Enjoy Christmas COVID permitting best you can.
Glad you are keeping up your positive attitude. When my husband was diagnosed with a sinus tumor I gave him a button to wear...it said: ATTITUDE is the difference between an ordeal and an adventure. He kept his positive attitude to the end♥️ You have so many things going on in your life and you have been helpful to many of us here. I really appreciate your knowledge base and how much you contribute here. I wish you all the best in YOUR “adventure”.
Hi Hunter, I've not been on the forum for a long while & it seems that you've had more challenges that you've been tackling with admirable positivity. I always think of your words of advice about being your own advocate in health treatment & being informed. I salute your approach and wish your ongoing success following the eye exercises. You've got some great music sorted! Have you also come across Stacey Kent? She's great!I know vision disturbance occurred for me at its most persistent when my platelets spiked at a time of high stress. This is a rarer occurrence now for me now with aspirin thankfully but it's most disconcerting & I hope that you're able to avoid the anti-seizure meds!
I will check out Stacy Kent. Always good to hear more great music.
The jaw surgery went well. The tumor turned out to be a lipoma with osseous metaplasia (fat tumor that turned 75% into bone tissue). It was benign and completely removed. Recovery was without significant problems.
I have started up the eye exercises. Learned to do it pretty quick, but it appears I am one of those who experiences nausea when doing it. Kind of like motion sickness. I will try a few things and figure out how to do it in a way that is tolerable.
Regarding the visual disturbances, we evaluated the cause extensively. For me it is unrelated to the thrombocytosis. Some of us do experience retinal issues with MPNs, which is something I checked into. My issues were neurological and certainly related to the tumor/surgery. Hopefully it was just a phase in healing and will not recur. That whole escapade was yet another opportunity to learn things I did not know before (how to distinguish a retinal migraine from a acephalgic migraine with visual aura).
I am stunned by the experiences of people like yourself who are dealing with different pathologies. You have a very informed, rational approach that I find frankly inspiring. I am aware of having a couple of other potential issues boiling in the pot (one on my brain... a meningioma that is so far silent and still, another the novelty of a possible autoimmune disease kept under control at the moment with cortisone) and I could easily fall into fear and stress, but your posts help me to keep my head and try being in the driving seat. Thank you 🙏🏼 😊
I certainly understand what it is like to be juggling multiple medical issues and keeping everything coordinated. I learned the hard way how important it is to stay in control and make sure that your treatment priorities are what drives your treatment. That is why I have become such a strong advocate for patients being in charge of their own treatment. As to being in the "driving seat" - Yoda says "Do or do not. There is no try." Yoda is very wise.
I love and respect my multiple treatment teams, but I insist on being in charge of my own treatment. Doctors consult, advise, educate, and write orders or prescriptions. Patients make decisions. Educated and assertive patients receive higher quality care. Passive patients do not. I wish you all the best in managing your multiple conditions.
Great news about your surgery and here's hoping regarding any more visual disturbances. I'm just having a bit of a battle with my platelets which shot up recently. I hoped it was a blip but they are still up so I have had to increase the hydroxy. My haem is very good at monitoring these things though, so my next appointment is in 3 weeks. I'm hoping the increased hydroxy will work for me, but as you say, Besremi is looking like a good option. Thanks for all your insight into MPN matters.
You are correct that Besremi may be a good option. Some people are refractory to HU and some are intolerant of it. The PEG-IFNs work in a different way and for some is a better choice from a risk/benefit perspective. Hope you get some answers soon.
Great news about your MRI. Good luck with the eye exercises. Music sounds like a good idea.Seasons greetings to you and hope 2021 is a better year for us all.
So pleased that your MRI scan results are good Hunter. Thanks for the update and all your advice that you take time to give to us. All the very best to you too 😊
Just catching up on MPN site. So pleased to hear your MRI scan was good and you are copeing with all your many other problems . I am awaiting a scan on my left lower leg which is swollen, perhaps vascular related. Just like to wish you a happy Christmas and very best wishes for 2021! Kind regards, Fran
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Agree . That is the best formula . 
Switch from HU to Pegasys - update 4.0
