Just met with my regular hematologist for a follow up. The CBC looks good, with HCT dropping a bit more to 43.0%. All the other numbers look good. We will carry on with the current plan, Besremi 150mcg and monitor labs every 8 weeks. I am very pleased that the three more doses of Besremi + a single phlebotomy brought me back down to target with no adverse effects.
I had the MRI of the brain and met with my Neurologist/NF Specialist on 01/30. There is no sign of tumor recurrence. The visual effects I had from the brain surgery have decreased. No visual migraine incidents since October. One new thing is that there is a Flair Spot on the MRI, located in the anterior right lateral ventricle. It is forward of where the tumor was. It was a bit clearer to see this time but has been present before. This spot could be just about anything from residual tissue from development of the brain, to a cyst or other hamartoma, to a new tumor forming. There is an image below for those interested in such things. I am not particularly worried about this anomaly. It is just something to keep an eye on. The plan is just to monitor at 6-month intervals.
Next week is the week of many heart scans. I finished the 2-week heart monitor. Now on for a CT Cardiac Calcium Screen, Cardiac Stress test, and Echocardiogram. The incidents of tachycardia have actually been decreasing but we are going to do a more thorough check of cardiac status due to the occasions unexplained mild tachypnea I have experienced recently. We will see what the results show in a couple of weeks.
Despite the occasional challenge (AKA interesting health learning opportunities), things are going quite well. I am blessed to have a wonderful treatment team who I trust and can collaborate with. I feel good and look forward to continuing to manage the various issues successfully.
Wishing all of you all the best and success on your journeys.
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hunter5582
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Image from MRI of the brain. Note Flair spot in anterior right lateral ventricle. Note that this is on the left side of the image, which is the view from below the brain. The Flair is the whiter spot at the upper tip of the ventricle.
Wow, nice job, Hunter! You have an impressive team monitoring all that. I'm just starting my second dose of Besremi (plus second phlebotomy) this coming week. The hema/oncologist in town was concerned that I had a recent visual episode (not my usual migraines, but something more internal, a instant of dimming sensation) on the meds, but I've had a few episodes like that before the Besremi. He was worried about it being a retina damage side effect from the Besremi, but I'm pretty sure it is the high platelets messing with the brain in a very fleeting and polite tho threatening way. Neither a good thing, but I hate to rush off to the ophthalmologist unless/until this happens again soon after an injection. At any rate, I am amazed at all the factors you are balancing. I am just starting to see how complex it is to know what is going on and where to seek help.
If the visual incidents were happening before the Besremi, I would suspect the same thing as you. A MPN microvascular symptom does seem possible. It may well be that the Besremi will help with this. There is, of course a risk with Besremi, just like there is a risk with everything - including not taking the Besremi. We just each have to do our own risk/benefit analysis and make the best judgement we can.
For what it is worth, i would do the same thing you have decided to do. Except maybe I would contact the ophthalmologist sooner rather than later. I have several eye docs, regular ophthalmologist, retina specialist, neuro-ophthalmologist, orthoptist and an optician. My care team takes good care of my eyes. Go team! I can dial-a-doc for whatever eye issue comes up.
Wishing you all the best with your Besremi journey.
Great news. And it's great to have your support on here. I have been ignorant to my condition for years.No symptoms No cares. But now things are changing I feel I should have taken more interest. So now I'm reading up and trying to get my head around my condition. Thanks again for all your support and knowledge. Have a good day 💛
Great news! Sounds like things are moving in the right direction. I took my first Beremi injection and so far no side effects, but it was only 50mg. Will see how I do at 100mg. Thanks for all of the info!
When I injected the first dose of 50 mcg, I was amazed that anyone could expect so little of anything to make any, much less a large difference. I'm now at 250 mcg every 2 weeks, and it still seems to be so little to expect so much from...
Yes, was a tiny dose. I am assuming doctor recommended it just to kind of get things started. I am going to be curious to see what dosage I end up at. I have really never had many issues with my HCT. Phlebotomies last me 5 months or sometimes longer. I have really high platelets and wbcs started to come up which I now know is from me finding out I have MS. So, I will be interested to see what dosage works for me. My MD Anderson doc said most of his patient are at 150-300 that are controlled. I feel like most people would be on 150mg or higher as maintenance, but will see. Just hoping all continues to go well on it until they come out with something better! Pretty amazing to see the break throughs in medicine right now. I know in my Derm world Jak inhibitors and TYC 2 drugs are changing the landscape. I think some of this MPN improvement just has to do with discovering these inflammatory markers that cause so many problems! Best of luck to you too. Hopefully, this medication is the answer to help all of us live longer happier lives.
Wow, you have alot going on! Good thing you have a great team of doctors. It sounds like you don't attribute any of it to Besremi. Is any of it PV related symptoms? After my third injection of Besremi, my HCT is at 45.1, which means I need a phlebotomy. I am a little bummed about that but know I need to be patient. I am also considering increasing the dosage to 200 from 150. My doctor will not disagree as she is fine to follow what the prescription says. The last 2 injections were at 150. I was thinking if I increase to 200 (next Wed), perhaps by the end of the month, my HCT will be down and I can avoid the phlebotomy. Glad to hear all is well with you.
I have very few PV symptoms. I have never had an incident of thrombosis. I have experienced some increased bleeding when my PLT > 800. I have had some microvascular issues (mild erythromelalgia - AKA PV toes) that aspirin takes care of. The only direct PV symptoms are related to systemic inflammation due to excess cytokines. That is more subtle and difficult to nail down.
Besremi has been effective and very easy to tolerate, particularly compared to the other treatments I have tried. The only adverse effects have been itching and occasional popup rashes. This has been well controlled with a daily Claritin. I also experience mild lymphopenia and borderline neutropenia. This is pretty common with the cytoreductive meds since they are suppressing blood cell production.
Not sure what the issue with increasing the Besremi dose is in your case. Providing you are tolerating it, the instructions are to increase by 50mcg increments until hematologic parameters are stabilized. besremihcp.com/dosing/
You can check the label on this yourself. Suggest you review the dosing instructions with your MPN Specialist. Your MPN care tram can best advise you on your dosing.
Thank you Hunter, I always learn from your posts and appreciate the time you take and the specific information you share. Most of all - your positive, inquisitive approach is a role model for how we approach our health care challenges. Thank you.
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Update 
Diagnosis update - PV - in limbo 
