Update 7.0

[hunter5582]

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.

[hunter5582]

CMP Results

CMP

[hunter5582 in reply to hunter5582]

Iron panel results

Iron panel

[Mostew in reply to hunter5582]

so pleased your good progress continues . Impressive what your instructor said .

You are an inspiration.

Best wishes to you Hunter

Carolyn

[sbs_patient in reply to hunter5582]

That's great news!! Interestingly, I went for blood work this morning after a bit more than three months on Jakafi, now taking 10 mg once a day. HGB and HCT are now 11.1 and 33.7%, respectively; both have steadily increased from their low points of 10.0 and 31.8% about a month ago. PLT is now 435, much reduced from the high 500s of a few weeks ago. WBC is still high at 15.86 and RBC low at 3.63, but both numbers now look relatively stable. The side effects of the anemia indicated by the low HGB numbers have now vanished, and I feel pretty well. It seems that this Jakafi dosage is working well for me, and I hope that this situation will continue. Good luck with your ongoing recovery from your brain and heart issues!

Stephen

[Peachjoy]

good to read all your positive updates on your progress. Fitness training is paying off!

[Hopetohelp]

Sometimes we have little blips that settle down as body steadily and quietly continues to adjust to our medication. You have great goals and sounds like you are doing really well with a good sense of humour too😂

[GardNerd]

This is so great to see. Congratulations! I also love your positive attitude and commitment to well-being. Way to go!

[EPguy]

Great progress. So frustrating to miss your latest allele from such errors.

The CBC is hard to read, I think the Ly # is 0.55, is that right? We've discussed that as the lowest desirable limit, my Dr has the same. Your neut looks well in range.

My Dr has stopped my dose increases bec of declining WBCs. Ok by me.

Your ALT/AST is about 2x, well within the 3x that they list on the label.

What is your current dose?

[hunter5582 in reply to EPguy]

Lymph # = 0.56. Still above the cutoff of 0.50 that we are using.

I am not too concerned abut the ALT/AST. Just do not want to see it go higher. Planning to be kind to my liver and just keep an eye on it.

We are keeping the Besremi dose at 150mcg for now. We will see how it goes.

[T1960]

Wishing you well Hunter, you are such an inspiration for us all. And of course very knowledgeable. I wish that I could be so switched on. I will be switching from Hydroxy to Peg interferon in the New year.(Uk) Obviously not as toxic and my side effects my lesson. It's worth a try don't you think. Take care.

[LittleLuna]

happy to hear positive results Hunter. You are an inspiration.

Have a lovely weekend 😀

[merlisa]

I am a patient with MPN in China. At present, I have been treated with short acting interferon and Ruxitinib. The doctor found that I have not only MPN, but also hemolysis, which should be secondary to fibrosis. The problem of hemolysis also caused my iron content to exceed the standard. Now another iron removal treatment has been added. I did not have blood transfusion, because I had high iron due to hemolysis. At present, my serum ferritin value is in the normal range, but the organ iron content is much higher than that of the normal person according to the energy spectrum CT. I believe that MPN has the problem of abnormal iron metabolism. Of course, my hemolysis aggravates the problem.

[hunter5582 in reply to merlisa]

That sounds like a very complex situation. I hope you are able to find a MPN Specialist to consult with. It is correct the Polycythemia Vera involves iron deregulation, but in a different way. Your situation seems like it would be tricky to manage. Wishing you great success moving forward.