I have been diagnosed JAK2+ MPN in the last few weeks. I was getting pain in my fingers and toes and dizzy spells and a blood test showed my red cells up at 900 odd. I have had bone marrow biopsy and it shows no scarring right now so its one or both of PCV or ET we think. I am currently just on Aspirin 75mg and have been having Venesections. I'm 38 and my consultant has not put me on any drugs to bring down my cell count. On last blood test it was around the 1.3 million mark but they have said, because of my relatively young age, they dont want to go onto any chemo drugs as there are other risks involved. My Haematocrit level (hopefully the right thing) has come down to 0.44 which they say is what they want to happen via the Venesections but , as I said my cell count is still quite high. I guess my question is should I be on anything else to bring the cell count down? Should I look at a second opinion? My consultant seems good but I have heard so many good things about Guys and Dr Harrison. I feel better than I have done in ages and the Aspirin seems to have solved most issues (apart from feeling knackered but two small kids also dont help that). I travel a lot for work on some long hall flights and have not really thought about whether that may be an issue with high cell counts. Any Advice? Sorry its a bit of a ramble post. My head has not really taken it all in and I am just really going along with what I am told but I think I may start seeking out advice myself.
Cheers for all the help. Its a great site and good to know there are others out there.
Joe
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Hi Joe - are your platelets raised as well as red cells? I have ET and was on aspirin only from age 47 to 60, then started Pegasys due to rising platelet counts and reaching that age.
Each of us is different so good medical advice is essential - a second opinion from an MPN expert never does any harm, to see if any further treatment is advisable or if you can continue just on aspirin for the moment.
Pegasys can be a good treatment in younger patients but again it's all down to individual cases - definitely worth exploring all the options.
I've only been diagnosed with an MPN ( ET MF) and aware of this site since the begining of this year so I'm very new, but I've found the people here unbelievably heplful and well informed. People speak highly of the team in Birmingham as well as Prof Harrison at Guys. And Maz can find you a buddy .
Apologies I meant my platelets are up at 1.3 million. I think my red cells are relatively normal.. To be honest I cant see that count in any but my first blood test. There are so many counts and words that I dont have any idea of the meaning too I could have high everything to be honest.
Good to here you were just on Aspirin as well though Andy. I just worry that 1.3million compared to the norm of 400,000 is a bit high.
Thanks Rachel I am planning on using this site and MPN voice to find stuff out and will probably have a look at a second opinion from Guys maybe. Has anyone done that and, if so, how did you go about getting referred?
It is a minefield, best just to leave it to the experts I guess. I have ET aged 73 and have peripheral vascular disease. Has anyone thought of changing their diet verging on Vegan. To eliminate dairy perhaps. I wonder if this would help my circulation, after all we are what we eat?
Hi Joe - 1.3m is high but in the absence of any other risk factors many haematologists seem ok with up to 1.5m on aspirin only in the under 60s.
My range was generally in the 800-900ks but rose to 1.1m around the time I turned 60, after which age they advise to reduce platelets to normal range. I'm now in the 300ks on Pegasys but glad I could hold off treatment till now.
Hi Joe. If it's any consolation my platelet count is currently around 1300 and as I now have PV (rather than ET - my initial diagnosis) I also have venesections when my haematocrit goes above 45. Other than that I'm on aspirin. I've been told that drug treatment is only really up for discussion post age 60 or platelets going above 1500 - unless there are other risk factors or symptoms are not being managed. I'm under the team at Guy's. You may want to get some extra advice about your long haul flights.
Hi Joe, just wanted to say hello as I've been in a very similar situation this year being diagnosed with PV Jak2 at 39.. luckily in my case so far my platelets have been ok & it was just my HCT that was through the roof to begin with! Fortunately repeated venesections have brought that down & I hope not to start drugs for a while as long as that continues. I think it's so important to feel really confident with your haematologist which so far I have been.. this site is really useful too to help see what other treatments people are on who are similar to you giving you more information & questions for your consultant if necessary. Wishing you all the best as I know how hard it is with a young family & of course you are working too.. take care x
Thanks for everyones replies. Just the advice and reassurance that others have similar counts and have been told similar things about treatments is reassuring. Betsy it sounds like you have a very similar situation to me. Venesections to bring down the HCT and then monitoring and a drain when required. Like i said I feel fine and the Aspirin seems to have solved most symptoms so I guess I will carry on as per normal and just see what happens next. I will ask about anything I may need for flights though as these are becoming more frequent.
Thanks all for replying. I'm can see me using this site and MPN voice quite a lot.
My platelets were 800 when i had stroke and tia's i have been on interferon alpha injections for eight years i have Et and jak2 pos at age 39 only just found this site,people have said ET is a blood cancer but my doctors have never said any information would be great,over the years tried not to think to much in to it
Hi Joe - I've done quite a few long haul flights since being diagnosed. Used low molecular weight heparin injections to reduce the risk of DVT so I suggest you discuss that with your haem - all the normal in flight precautions help too...
Hi Joe, welcome to our forum, as you can see you are in the right place for advice and support, if you would like copies of any of our information booklets email me at maz.cd@mpnvoice.org.uk you can print them yourself from the website, they are very useful to have with you for you to learn more and to inform other people. With regards to medication, we are all very different, despite the fact that we have ET, or PV or MF, so treatment is very individual and does depend on a lot of factors like blood counts, current and past medical history and any risk factors you have, like high blood pressure or family history of clots etc, so your consultant will have taken all this into account. Some people are on medication with what seems like low platelet counts because they are suffering with symptoms of dizziness, head pains etc and there are some people with high counts that don't have any symptoms at all, MPNs are very strange. You can fly but you must follow the guidance from your haematologist with regards to when you take aspirin and you must keep well hydrated on the flight and move around as much as you can, not always easy on a plane I know, but if you can't walk up and down the aisle then move your arms and legs as much as you can when you are in your seat almost like you are marching on the spot, you might look a bit weird to other people but so what, if it keeps your blood moving around then it's worth it. You can ask for a 2nd opinion from a consultant of your choice, just ask your GP to refer you. Best wishes, Maz
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