New Need Advice please

[chefwife8]

Hello, I am new here and so confused. I saw a hematologist in October due to swollen lymph nodes and high eosinophils he ordered bone marrow biopsy. Which came back showing MPN he stated, but nothing to do but wait no further testing recommend. My grandfather had myelofibrosis. I am not comfortable just waiting an seeing what happens wondering if I should get second opinion and possibly see Dr who specializes in MPNs. Any advice would be wonderful thanks

[D1i2a3]

Hi sorry to here that has he got you a hospital appointment depends on your platelet count what medication you should be on has he put you on aspirin ? Diana

[chefwife8 in reply to D1i2a3]

No medication he said nothing to be done and provided no information about this basically said don't worry about it.

[mhos61]

You certainly shouldn’t be left confused, knowledge is power.

Has the bmb revealed which MPN you have ? Also, have you had a blood test to determine your mutation status? If you haven’t been told, it may well be worth consulting with an MPN Specialist.

Do you live in the UK? If so, Claire Harrison at Guy’s and St Thomas is a renowned MPN Specialist, as is Tim Somervaille at The Christie, Manchester..

[chefwife8 in reply to mhos61]

Thank you. No was not told what type have not had any other blood test done. I am from the US. I have appointment with my primary care physician in the 24th and will see about referral to specialist

[mhos61 in reply to chefwife8]

Have a look at ‘Patient Power’ an excellent site, it’s based in the USA. They will have list of MPN Specialists.

[Ebot]

Hi there. Sounds like you should definitely get a second opinion and preferably from an MPN specialist particularly given your family history. It’s really quite odd not to be offered further testing and further follow up. And any good consultant would sit down and explain your diagnosis, prognosis etc. At the very least you want confirmation of which MPN you have, which mutations and knowledge of your various blood counts. ‘The nothing to be done’ comment doesn’t sound like it comes from someone who has specialised knowledge of MPNs. I wouldn’t be comfortable just waiting either.

[Aime]

Hi, agree with Ebot, definitely ask for a second opinion with an MPN expert to confirm what you have got. There are a lot of people on this forum who have different MPNS and have been around for years, so don’t panic re your possible diagnosis. When you go to your appointment, write down the questions you need answers to and insist on getting them. If you can take someone with you for support.

You will find trustworthy information on this forum and on the mpnvoice website as they are closely monitored. Definitely also have a look at MPN Patient Power, US equivalent of MPN voice.

Keep in touch, you will always get support here on this friendly forum. You will need it just now, in particular because it’s a worrying time at the beginning, going through tests and awaiting results. Try not to worry too much, we are all here for one another.

Kindest regards Aime x😻

[hunter5582]

With the testing you have already had you really should have a more definitive diagnosis. Do you know yet whether you are JAK2 or other common MPN mutation positive?

Time for a new doc - one who is a MPN expert. Here is a list of patient-recommended MPN expert docs. mpnforum.com/list-hem/ . It is worth whatever it takes to get to see a doc with the expertise you need.

With a family history of MF, you are right to pay attention to what is going on. The JAK2 mutation is an acquired mutation - you are not born with it. Emerging research indicates that there may be an underlying JAK2 v617f haplotype that predisposes you to acquiring this mutation later in life. This is something that can be inherited. I am JAK2 positive - so is my daughter. The familial MPN variant is something that is under investigation. Hopefully we will all learn more about it in the future.

Managing my PV along with a host of other medical issues has taught me one important thing. Assertive patients receive higher quality care. Passive patients do not. I learned the hard way to not just sit back and accept sub-optimal care. You deserve the best care possible, but may have to advocate for yourself to receive it.

All the best.

[Cassie11]

Hi. If you are under 60 you are not high risk and he must think the lymph nodes are a separate issue. Maybe get a second opinion to check.