ET but with falling platelet counts

[Alired]

Hi All,

I went for my annual blood test and found my platelet count had fallen from 800 to 250. Doc ordered an ultrasound and my spleen has grown to 18cm up from 14cm 6 years ago.

Doc thinks I might have been misdiagnosed and in actual fact I have MF. What do you folks think.

Doc wants me to have a Trephine now... is it sore? Me no like big needles...

Thanks everyone...

[fee13]

Oh dear! What's a Trephine? I'm presuming it's a bone marrow biopsy. This will be the only way to determine what you actually have. I have not had one but many people find it a little uncomfortable but bearable. There is a lot of discussion on this throughout the forums 😊

[katiewalsh]

Dear Alired. I’m not familiar with that term. But if it is a BMB, almost all of us have had them at least once and experiences range from no problems or discomfort to it hurt but the pain doesn’t last long. But I’m more concerned about your comment regarding labs. Is your doc an expert in MPN’s? I’m puzzled that you’re only have blood work once a year. Most of us have it every 4-6 weeks. A bone marrow biopsy would be really important to determine what MPN you currently have so you can get on the correct course of treatment. Unless your doctor specializes in MPN’s I’d encourage you to find one that does. And if your doc does specialize in MPN’s you might want to get a second opinion from another specialist. Please remember we’re here for support, or a place to rant. I hope someone can answer your question. Katie

[socrates_8]

Hey Alired...

I'd suggest that having a BMB is essential at this stage. Hopefully, you might have an inhaler for the pain, and then you are most likely to not feel a thing... I haven't as of x2 BMBs since 2016.

Your spleen definitely sounds a major concern, and you might need to have more regular bloods conducted, as suggested by Katie above...

Perhaps finding another specialist opinion might be a useful exercise too...

Best wishes

Steve

(Sydney)

[Heidi-W]

Hi Alired

Good luck with the bone marrow biopsy. Def worth getting checked out to confirm correct diagnosis from the BMB and hopefully you will have more regular monitoring now. It may open up more treatment options too. I'm in similar boat to you and hoping to have my 1st BMB this week too as losing weight and my spleen hasn't shrunk from 18cm with a year of the hydroxy for my PV. Good luck x

Heidi

[ihavegotet]

You definitely need a biopsy to confirm that. There is two types of MF. Primary and secondary to ET or PV. It is possible you progressed to MF but only a bone marrow biopsy will tell. I have had 2 and done well both times with sedation. Good luck.

[Stephen399b]

I have ET and another mast cell condition called systemic mastocytosis. I have blood test every month to monitor counts. I havr had 2 BMBs - not pleasant but with a bit of local anaesthetic, just uncomfortable for a couple of hours. Absolutely vital to get proper disgnosis,

Totally agree that you need to be sure that your consultant understands fully about MPNs. MY GP fully admits he doesn't and you need to get expert help. You don't say what meds you are on, there are so many differemt combinations and your spleen growth needs to be properly treated. I hate needles, but frankly it is secondary to getting the right treatment - just don't look and you can't see the BMB as it is in your back.

Good luck - but get on with it!

Stephen

[Alired]

Thanks folks. I am getting on with my BMB this Friday! Cheers

[Aneliv9]

what was your BMB results ? Did your ET progressed to MF?