Diagnosis with Polycythemia today: Today I went to... - MPN Voice

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Diagnosis with Polycythemia today

Zar77
Zar77

Today I went to see my Hematologist he said I have mpn Polycythemia.

I had bloods taken shows my bloods are evaluating and everything else. My ct scan shows my spleen is fine and everything else is ok. He wants me to take Asprin. He wants me to decide treatment either Hydroxyurea or peg interferon treatment. Can someone please tell me which one is better option?. I am not sure which one is better option. He gave me a leaflet about each drug. Woman 42 yrs. he wants to check for fibrosis so I got booking for bone marrow soon. Once he has the results from bm he will have an idea on what steps to take next. I start peg interferon next Friday. I see him next in 5 weeks.

Any help will be useful.

I forgot to ask which mutations I have. Maybe I will ask the nurse next week when I get interferon

My last bloods was in 2016 was clear. Last April I fainted didn’t go to the doctors. So I have feeling it started around that time my symptoms.

10 Replies
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I found that the very best thing to do is to make a list of my questions when I go in to see the specialist or the nurse, as there is such a lot going on in our heads that whatever we wanted to ask flies right out of our heads. I also make a note of the answers, for the same reason. Once you have your bone marrow biopsy done you and your haemo will be in a better position to decide next steps. I can't give you the answer to whether interferon or HU is better - our conditions are so individual, which makes the best treatment a very individual thing, too. I've been taking HU for almost a year, and nothing bad has happened.

It’s interesting that your haem wants to put you on drug treatment immediately especially as you are relatively young. Are you booked in for venesections? This is usually a first line treatment for someone with PV. It does seem important to get the results of the BMB to understand exactly what is going on and make an informed choice about treatments. Do you know why he felt drug treatment was so urgent? I’m on Hydroxy - but that was only a long time after other non drug options (aside from aspirin) were explored. Hydroxy is generally very well tolerated and can make a great impact on counts within a relatively short time frame. Let us know how you get on.

Zar77
Zar77 in reply to Ebot

My Hematologist never mentioned about venesections. He rather wait for the bone marrow results. I finally got booking for today hopefully it won’t be painful. He never mentioned wat mpn I had until the end I said do I have et because my previous results said thrombocytosis then he said Polycythemia. I recorded my session so I can hear everything was said and send my family’s copy.

Ebot
Ebot in reply to Zar77

Good luck with the BMB. I’ve had two. Not my favourite activity(!) but manageable. Maybe it is worth having a conversation with your CNS (specialist nurse) or the haematologist to discuss your condition and your treatment options. There is rarely a good reason for rushing to start drug treatments and good clinicians will want to talk through all your options - including waiting / doing nothing.

Hi, if I were you I would try Pegasys first. I also have PV, diagnosed in 2014, at 50. After one year on aspirin only, I started on Peg, 90mcg/week. Over 3.5 years later, I only need to inject every 3 weeks, 45mcg, and my counts are all normal and have been stable for years. Pegasys has been great for me, with minimal side effects only. I lead a normal very busy life, with full time work and teenage sons. It is not chemo like hydro, so it is better for younger patients, and it can lead to remission in some cases. Not everyone tolerates it well but most do, at the low doses we take. Good luck! Susana x

I don’t know where you live but here in the USA, my hemo didn’t diagnose me or start me on medication until I had my bmb. I got referred to him by my primary care doctor when he took my blood and it was 600,000. I had ET Jak2 positive and he started me on Hydroxy. 8 years later I progressed to PV and now I take Jakafi, as well. I asked my doctor about interferon back then and he said the side effects weren’t worth it. But everyone reacts differently to treatments and everyone’s numbers are different. Good luck with your treatment, whichever way you go.

I had my bone marrow test done today. The guy failed 3 times just to get some samples he only managed to get the fluid. My right leg hurt so much I had enough I had to sit up to relax my leg then I felt dizzy I fainted. He then got someone else to do the process she manage to do it and I didn’t even feel pain. When he did it I feel the scrapping trying to get the sample. Worst ever experience. I found out I am jak2 positive with Polycythemia.

I have ET so I can't comment about PV at all, but I am on Hydroxy and have had no problems. Hydroxy is very common and tolerated well by most people so all I can say is not to worry about the drug. How you compare H vs peg interferon is down to you and your circumstances - just don't feel rushed into making a decision. Make sure you find out as much as you need to, and then decide. You'll feel happier that you are in control.

I'm guessing you can switch if you have problems?

Most of all, don't worry

If you plan to get pregnant you should choose interferon. Also, 30+ years is a long time to be on hydroxyurea. There is an opinion in the mpn world that interferon should be given in low doses at an early stage in mpn diseases to prevent progression and clotting catastrophes and in some cases to reverse the course of the disease. Personally, I had a bad experience with HU and am now at age 69 successfully switched over to Pegasys. Some people have had bad experiences with Pegasys and cannot tolerate it.

lynxfluff
lynxfluff in reply to charl17

^ I agree with this. Of course, you with your physician should make this highly personal decision. But these are the reasons why I went with Pegasys instead of HU.

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