Things have been coming along pretty well. Iron levels are gradually increasing, resulting in an increase in erythrocytes. On 10/07 at my PCP lab, HCT = 47.7% and HGB = 15.3. Subsequently labs at hematology lab, HCT dropped to 44.4 and 46.0. HBG = 14.7 and 15.0. Since HGB is staying in the desired range, we did not change anything due to the increase in HCT over 45%. The docs did not feel that an increase in Besremi dose nor phlebotomy was needed at this point. We will continue to monitor
There was another liver anomaly on the last CMP (below). ALT = 124. AST = 87.0. Alk Phos = 167. We have seen the elevations in ALT & AST before but this is the highest they have been. These elevations are still considered mild and do not warrant a change in treatment plan. I will plan to be nice to my liver and just carry on.
Unfortunately, the phlebotomist ordered the wrong JAK2 test, qualitative instead of the quantitative test the doctor ordered. Fortunately I have direct access to the Labcorp portal and caught it as soon as the result posted. I immediately let the hematology office know so we can get the issue corrected ASAP.
I have an appointment with the MPN doc at Johns Hopkins on 12/15. We will review all the labs for the last 6 months and see where we go from there.
I also have an appointment for a brain MRI and neurology appointment on the same day. Follow up from the brain tumor. The visual migraines have slowed down in frequency and intensity, indicating continued healing of the brain. Hopefully there will be no sign of tumor recurrence as well.
The incidents of tachycardia have also decreased. Not sure why they are declining, but I will gladly take it as progress.
On the whole, I am feeling fine. Working on increasing my level of physical conditioning. Planning to step up the Gung Fu and physical conditioning. I did an evaluation with a physical trainer. He gave me the choice of the "Silver Sneakers" test or his default for younger folks, the Marine Corp basic fitness test. I opted for the latter. I did not pass, of course, so no going to Marine Corp Boot Camp for me! I was surprisingly not that far off though. The trainer said he hopes he could do as well when he is 67. My new goal is to qualify to get sent to Marine Corp Boot Camp. We will see how that one goes
Wishing you all well on your MPN journey. Thanks to all for the support here on the forum on my MPN journey.
Written by
hunter5582
To view profiles and participate in discussions please or .
Well done!! You are such an inspiration to us all on here and you have done so well on your long MPN journey. Thank you Hunter and all the best as you continue
Good to know you’re doing not too bad apart from the liver issues. Hopefully when you see your consultant and go over the last six months readings they will perhaps suggest something. Very well done with your fitness test! Wishing you all the best for Christmas and the coming year. Regards, Fran
Thanks Hunter for sharing your CBC and CMP results. When I had a slightly elevated liver activity, as indicated by AST and ALT readings, I read about what I can do to mitigate it; and had found within my search that coffee drinking is good for relieving it. It was very much welcome and accordingly increased my coffee consumption, and of course cut down on wine consumption. So far, the results have been good!
I just got my (monthly) lab results and my AST was 49 (normal 10-35) and ALT was 60 (normal 9-46) from Quest Diagnostics. The MPN specialist does not have comments yet. This is just the second time in the last 10 months since taking Besremi that these AST/ALT numbers are out of normal range. I just came off a 14- day covid positive condition with colds/coughing symptoms - not severe - 2 days before the lab test/blood drawn. I imagine the rounds of Tylenol would also have added to the liver enzyme activities. Surprisingly my hemoglobin is low for the first time at 12.9 (normal 13.2 -17.1). I am normal on other CBC, CMP, and Iron/Ferritin numbers. I guess it is worth waiting for next month when maybe any covid effects are no longer a factor.
My hematologists would not do anything about such a small elevation. I am currently at significantly higher levels than your numbers. No change from my docs.
Refer to Table 1 on the Besremi label for the recommendations regarding liver function. Note that the threshold is Upper Limit of Normal (ULN) > 5x. ULN > 3x is acceptable. accessdata.fda.gov/drugsatf...
The bottom line is that we are making some fundamental changes to how our body functions in order the treat the PV. This can have consequences other than reducing hematopoiesis. A small elevation in liver enzymes is tolerable and well worth the benefit that Besremi provides.
Suggest you review all this with a MPN Specialist. That way you can get a detailed case-specific explanation of how this all bears on you.
Thank you Hunter, you are an inspiration to everyone. I don’t post much but I do appreciate reading your replies and the time you take responding to everyone. I wish you well and God bless you x
I don't understand all of what you are saying, but I do admire your tenacity, vigor and determination, an inspiration to us all, I will walk 5 miles today.
you are doing so well! As I’m having breathlessness issues at the moment and severe fatigue the idea of Marine boot camp sends me into total horror! I know exercise is supposed to be good for my issues but short walks (one room to another) and daily climbing drill (into bed!) are the extent of my recent activity. That’s not quite true as I’m still responsible for meal production in my house and it will soon be my responsibility to sort out Christmas decorations too.
Seriously, joking apart, it is good to see you doing so relatively well. You are a shining example of how a clear understanding of our own conditions helps to guide our discussions with those responsible for our care. I know I’m not alone in appreciation of your wisdom and input into this forum
Wishing you all the joy of the holiday season. From Jan
Great news overall. Very happy to see your progress. Thanks to you for demonstrating a strong positive attitude and constant 'can do' attitude. It is inspiration!
Thank you Hunter for the amazing support, such an inspiration to us all, I have so many of my questions answered from your replies to others, so glad I found this forum. Such great news that you are doing so well. Take care Wishing you all the best, Happy Holidays
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Update on Shingles Vaccination in UK
An Update (good news)
