Biopsy for Dx essential thrombocytomia

[Doggy555]

Just Dx with ET and went for second opinion. Jak 2 positive, platelets between 485-550 (currently) 515, I’m in my 7O’s. 1st dr wanted to schedule biopsy, 2nd dr said she felt it wasn’t necessary as addition blood tests did not reveal other causes for high platelets. She said it’s not that it was wrong, but she doesn’t put her patients through it unless she has questions about Dx. Said even if results showed avdiffernt Dx which she doubts she would still treat it the same. Also scheduled ultrasound of spleen. Started on baby aspirin and hydroxyurea 500mg.

Have other people had a Dx just on two markers ( jak 2 positive and high platelets) or have you all gone thru the bone marrow biopsy? Of course I’m happy to skip it, but if it would alter tx (like not starting on the hydroxyurea until the platelets were in the 600-700 range, as another friends dr advised), than I will get it done. Thank you for your feedback.

[Mazcd Partner MPNVoice]

Hello Doggy555, this is a question that many people ask and this guidance might help you

healthunlocked.com/mpnvoice......

and not everyone does have to have a bone marrow biopsy for a definitive diagnosis, and with regards to your platelet count and Hydroxycarbamide, your platelet count is determined via your blood tests which you will have on a regular basis, your consultant will have assessed your overall medical health, including current and past medical conditions, as well as your platelet count to decide on the dose of Hydroxycarbamide.

MPNs are quite individual and a 'one size fits all' approach doesn't really apply, so the advice about not starting Hydroxycarbamide until the platelets reach the 600-700 range is not appropriate for everyone who has ET. It is always best to discuss your concerns with your haematologist or your specialist haematology nurse, they will be more than happy to discuss your concerns about your diagnosis and taking medication and why they have advised that you take the medication. You will see from the many posts on this forum that some people with higher platelets than you are only taking Aspirin, but this is again based on their individual circumstances and risk factors.

I hope this helps. Kind regards, Maz

[Doggy555 in reply to Mazcd]

Thank you for your reply, and information. I’m still trying to feel comfortable not having one as the first dr was ready to do one the very next week, and without doin the extra blood tests the second dr did, prior to prescribing, and feeling it was not necessary based on the additional tests.

[mhos61]

Hi Doggy555. Welcome to the forum.

Yes, I was diagnosed with ET based on raised platelets (500) and the Jak2+ test.

In 2016, the year I was diagnosed a bmb was included as a ‘major criteria ‘ for a diagnosis of ET, I was unaware of this at the time. I’m not concerned that I didn’t have a bmb. It is an invasive procedure, and I feel in my case it wasn’t necessary. This of course isn’t the case for everyone.

Mary

[Tico]

Hi Doggy. I did under go bmb, due to the fact most people then did in 2008. At the end of the day it is your decision. But my gut feeling is no,because your in your 70's. If i was younger than maybe because i would want to know virtually 100%. Warm wishes, tina.🤗

[Doggy555 in reply to Tico]

Thank you for your reply. It’s very helpful to hear other drs are not necessarily doing bmb.

[Vtr1000]

Hi Doggy555, I was diagnosed ET Jak2+ last year. They done some standard checks and blood tests. This confirmed the ET without a BMB.

[Doggy555]

Thank you. Did they start you on hydroxyurea? And if so at what platelet level?

[Vtr1000]

Hi Doggy555, yes I’ve started on hydroxycarbamide (hydroxyurea) and aspirin. My platelet level was 597.