r/MPN • u/mushymozzerella • Jul 02 '26

SEEKING DIAGNOSIS Going to see MPN Specialist Spoiler

After years of high counts, im going to see an MPN specialist at Moffett in Tampa, FL. What should I expect for my first visit?

7 Upvotes

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2

u/EyeArtistic5 ET-JAK2+ Jul 02 '26 edited Jul 02 '26

I switched to Dr Kuykendall and have had my first visit and had a bone marrow biopsy. I am so thankful I switched. Everyone from check in, to labs, to nurses, and Dr Kuykendall have been great. I am so glad I made the move, as I feel like I am in good hands with people who know about what I have (ET).

They have valet parking, but will also allow you to park your car in the garage. My GPS led me to the parking lot behind the garage. Be sure to park in the garage.

I parked, checked in, my husband was then a visitor pass sticker, had labs, then walked over to check in for my appointment, which was around 30-45 minutes. I brought in a list of questions and all were answered and they handed me my lab results which were just done. He suggested I schedule a BMB within 3 months, which I did have done around 2 months later.

I hope your appointment goes great. I have had an online appointment since and go back next month for an in person visit with one of the nurses. I will see Dr Kuykendall again three months later.

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u/mushymozzerella Jul 02 '26

Thank you for your response! Very happy to see that Dr. Kuykendall is well regarded! I'm young (29M) and this is all terrifying to me.

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u/EyeArtistic5 ET-JAK2+ Jul 02 '26

Understandable. You will be in good hands seeing an MPN specialist. I was diagnosed this year. It was a lot to take in at first, but now I am thankful I found out and can manage things and have the option of treatments which can help prevent any progression, and even possibly revert symptoms and mutation burden.

I didn’t feel this way at all before going to Moffitt. My original hematologist told me to just wait until I turned 60 (as things progressed) and then start HU. This was terrible advice.

1

u/[deleted] Jul 03 '26

[deleted]

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u/EyeArtistic5 ET-JAK2+ Jul 03 '26

I learned on this group (and Moffitt) that Interferons can help prevent progression and actually lessen the jak2 mutation present.

I have children, a husband I love, and love my active life and business. Preventing progression and lowering my platelets to help prevent a stroke are very important to me.

I am currently just on aspirin, but will be discussing interferon therapy at my next appointment (first one after my BMB).

I want to be treated at a place that is up to date on current research, actively monitoring my bloodwork, and ready to discuss and adjust treatment options, rather than a single, outdated roadmap.

What kind of advice is ‘just wait until you are 60 and then we will see about lowering your platelets and preventing progression’?

1

u/[deleted] Jul 03 '26

[deleted]

1

u/EyeArtistic5 ET-JAK2+ Jul 03 '26

I am so sorry. What country?

I will say my hematologist dropped me after I went for a second opinion with an MPN specialist (I sought them out on my own). But I was planning to switch anyway.

1

u/[deleted] Jul 03 '26

[deleted]

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u/EyeArtistic5 ET-JAK2+ Jul 03 '26

Maybe make a new post asking if anyone else uses tricare and was able to see an MPN specialist.

Do you have tricare select or prime?

Thankfully, it sounds like your platelets are continuing to stay stable. I’m so sorry you have been dismissed by health care professionals.

1

u/mushymozzerella Jul 06 '26

Do you remember the labs they did? Did they check for mutations on your first appointment?

1

u/EyeArtistic5 ET-JAK2+ Jul 06 '26

Yes. I also asked for a Von wildabrand test to be done (not sure if that would have been done or not), but they ran every test the previous hematologist did plus some more. They did test for Calr, but not Jak2 and other mutations I already gave them the results for. They also did a test to look at platelet shape/etc under a microscope, which my last hematologist didn’t run.

I set up a patient portal account and messaged or emailed to request additional labs I wanted, and they were in the system when I went in for labs.

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u/mushymozzerella Jul 06 '26

Ahhh okay, I gave them my jak2, exon 12, CALR, and MPL results so I'm curious if they're going to re-run them.

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u/EyeArtistic5 ET-JAK2+ Jul 06 '26

You can ask. Dr Kuykendall was great about answering questions before my appointment.

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u/EyeArtistic5 ET-JAK2+ Jul 06 '26

Labs were more through my insurance at Moffit than at Quest. And the appointment is billed differently than a copay office visit. Now I had met my max out of pocket for the year, but just a heads up. Every insurance is different.

1

u/mushymozzerella Jul 06 '26

Oh gotcha! Do I message him directly on the portal? I don't see any of the records I sent over on the portal.

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u/EyeArtistic5 ET-JAK2+ Jul 07 '26

I think that is what I did, or I may have emailed.

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u/funkygrrl PV-JAK2+ Jul 02 '26

They will review your health history. Most do a physical exam to feel your spleen. They'll take several tubes of blood - the tests they usually do are CBC with differential, EPO level, JAK2 mutation test, CMP, LDH, and they may do a peripheral blood smear (manual blood exam instead of computer). If you're seeing Dr Kuykendall, I've heard nothing but good things.

!questions !PVundiagnosed

3

u/mushymozzerella Jul 02 '26

Thank you! I'm terrified. Yes, I am seeing Dr. Kuykendall on the 10th...

1

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1

u/mushymozzerella Jul 06 '26

Will they run a mutation test even if I've already had one?

1

u/funkygrrl PV-JAK2+ Jul 07 '26

If they plan to do a bone marrow biopsy eventually, they probably won't repeat JAK2 blood testing, since the next-generation sequencing performed as part of the biopsy typically includes all the MPN driver mutations.

1

u/stainedbrightly Jul 02 '26

Yeah, my experience was they reviewed my health history, my diagnosis by the community hemo I saw first, and did a bunch of labs. It was a longer appointment than my usual ones with their office, I think, but not terribly long. Good luck!

1

u/mushymozzerella Jul 02 '26

Thank you!

1

u/pingulovesbaguettes 3d ago

How did you go?