update after seeing a specialist

[mother2britton]

Its been awhile so I just wanted to give an update and maybe I can help someone else. I was diagnosed back in September with ET CALR type 1. I was asymptomatic with platelets in the 600's (now 700's) found on a routine blood work up. I saw two local hematologists that I was not comfortable with so I flew out to see a specialist (they thought I was over reacting). I had a great hour long discussion with him and he answered all of the questions I had. In our discussion I asked him about the nucleated red blood cells on my prior lab and he said that with ET its not uncommon to see some (he gave a percentage but I cant remember), even to see blasts from time to time is not common but can happen. My LDH was at 317 and he said that to was very normal for E.T. as well. My WBC has been increasing over the last few years and are borderline high but still in the normal range and that is ok as well. He has cut offs for all these before concern but I cant remember what they are. We discussed a myeloid panel and we decided to hold off and maybe in the future if things change. He said insurance is tricky on this and at the end of the day it is great information but wont help in treatment. We also discussed a BMB and he was more than willing to do one but left that up to me and for now I will wait and if something changes I will opt to get one, again I don't believe I can treat the results but it may be good info to have at some point. He ran more labs and a blood smear including a Von Willebrand's which was also fine. As far as meds he said he will treat the symptoms not numbers alone and if or when I need cytoreduction he will start with hydroxyurea and if that didn't agree with me then an interferon (this is more of an insurance thing as well, try the cheapest to start). All in all it was a great experience and helped set my mind at ease for now. His advice was to stay in shape eat healthy and drink lots of water. I will be getting blood work every 3 months with my local hematologist and I will see him (specialist) once a year unless something changes. The Dr reviewed all my labs and had them posted within 48hrs with his comments and said they all looked good. I would tell anyone newly diagnosed and if they are uncomfortable with their care don't hesitate to make arrangements with a specialist if possible, it was well worth the time for me.

[hunter5582]

That is great news that you were able to see a MPN Specialist. Having the specialist consult annually is quite workable if you can find a local hematologist you like as well. That is exactly how I work it. I see the MPN specialist annually, He consults with me and my local hematologist about my care plan. My local hematologist is a fabulous doc, but not by his own definition a MPN expert. This arrangement works great.

It sounds like you came up with good care plan with the MPN specialist. Very sensible approach, particularly treat the symptoms not the numbers. FYI - I had no problem getting the JAK2 Quantitative Analysis and MPN Myeloid Panel authorized. I have Medicare primary and Cigna secondary for insurance. It is too bad that cost drives formularies for meds rather than what is in be patient's best interests. It is possible in some formularies to get the more expensive med authorized, but requires more work. Have plenty of experience with that at this point.

Glad to hear you got your care needs addressed so well. Taking initiative makes all the difference!

All the best,

[MPort]

You have been wise. I too saw an MPN specialist after about 6 months of being with a local haematologist. I so admired this local man who was so kind and helpful. But he had a glass ceiling and I was having frequent venesections for PV over a longer period so white count and platelets were too high. I paid for my initial concultation with an MPN specialist. It was decided I would go on interferon Intro A. That was 15 years ago. It hasn't been an easy ride but I firmly believe being reviewed by a specialist during the initial period after diàgnosis is a practical and an achievable step. It also provides reassurance in what can be a confusing and upsetting time. We'll done.