How many had BMB prior to diagnosis uk

[Notdiagnosed]

I just wondered how many of you in the UK had a bmb prior to your diagnosis even if you had jak2 or calr etc positive on blood test. Do you definitely have to have a biopsy if you have a positive gene.

[Vtr1000]

Hi Notdiagnosed, for me I was diagnosed without a BMB. However, I was offered one as a baseline for the future which I accepted.

[Kari1961]

Hi Notdiagnosed , I was diagnosed without a BMB, Jak 2+ PV. I wasn't offered one.

[Maggie-ol]

I was diagnosed with PV JAK2 from blood tests only and wasn’t offered a BM biopsy

[JojoWonder]

I have ET CalR. I haven’t had a BMB. My platelets which touched 1200 at their highest and the genetic testing showing the CalR mutation was enough to confirm diagnosis. Good luck on your journey x

[Dottiedot]

Hi I had a BMB after testing jak 2 positive PV

[Aldebaran25]

Hi, I was advised by two different haematologists that it was useful to have one as a baseline, so I had it although I already had the JAK2+ diagnosis.

[Squash_60]

Blood tests identified JAK2 ET for me. I’ve never been offered a BMB.

[Wally85]

Hi Notdiagnosed, I was not offered, and no mention was made of a BMB as a baseline test. I’m JAK2+.

Best wishes

[mark382]

I am JAK 2 negative and diagnosed on blood tests and ultrasound scans. Diagnosed with PV 14 years ago. Never offered BMB.

[Michali45]

How strange, I was not told I definitely had ET Jak2 until I had the BMB, I had had lots of blood tests but my impression was that only a BMB could confirm!

[dabs121]

Hi, My blood tests at the end of last year showed I had JAK2 and I was told I had ET. I discussed having a BMB with my haematologist but was told it wasn't necessary. I am now on HU and aspirin but do wonder at times if I may have PV and how my haematologist was so sure I have ET. At my next appointment I intend asking her to clarify this. All the best.

[Minu68]

Hi, I was diagnosed ET JAK2 positive after blood tests only. Was told that there is no point going through an invasive bmb aswell, as the blood tests provided clear diagnosis.

[JP1952]

Hi, I was diagnosed ET from blood tests but had a BMB as a baseline. The BMB confirmed the diagnosis. However, a year later a different haematologist changed the diagnosis to PV. Another year later I had a further BMB as part if a clinical trial and told I'd had PV from the start.

[Wildwood6]

Hi I was diagnosed with a probable MPN in December 2021 and had more blood tests and a BMB in January to determine I have primary myelofibrosis with a CALR mutation. I have a chart showing blood tests results going back to 2013 and consultants have said that indicates I have had an MPN (probably PV) since at least then.

[QA1982]

I was diagnosed with an MPN JAK2 positive from blood tests, Initially thought to be ET but from history Haematologist thought it might be PV And iron deficiency anaemia was hiding true picture, BMB confirmed her was right and given firm Diagnosis of PV.

[Notdiagnosed]

Aw Thanks to all who replied. I'm just most probably and hopefully worrying un necessarily. Thanks again all for taking time. Let's hope mine is just a blood test.

[FAR_2009]

I am a husband using the ID of my recently dead wife. She was diagnosed with MPN (MPD back then). We were very grateful for the discovery of JAK2 because it meant that she never had a BMB. She was terrified of any operations.

[piggie50 in reply to FAR_2009]

I am so sorry to hear that your wife has passed away from the AML. She was very brave posting her update eight months ago. My thoughts are with you.Take care

Judy 💐

[Penny-10]

I had a blood test only confirming essential thrombocythemia jak2 positive. Never mentioned BMB.

[MichaelS]

Hello interesting name 😊, I was diagnosed with PV in 1983 and I had a variety of blood tests and a BMB which proved the PVR. I'm not sure when JAK2 gene became known about, but in 2010 I had another BMB which showed the marrow had changed to MF. BMBs were NOT a horrible painful experience for me, just a bit uncomfortable.

I would have it done to assist the haematology team set up a good marker for future reference and more comprehensive understanding of your particular blood and marrow set up.

I'm 75 now, and keeping as active as I can and having a hip replacement in mid May 🤞

[Notdiagnosed in reply to MichaelS]

If you mean my username then I hope I don't have to change it or it becomes inappropriate!!!!

Thanks for replying.

[MichaelS in reply to Notdiagnosed]

No need to change your name as it explain your interests 😉

[Notdiagnosed in reply to MichaelS]

Hi MichaelS. What I mean is I have had high platelets and having my first recent trip to haematology whereby I would expect to have the mutations tested although not certain. I have had all other tests which are ok up to yet to see why my platelets are higher than normal so going by protocol I think it may be the next step.

I had blood films done but my gp hadn't got the results so maybe they will throw some information as to why. I'm going friday this week. I have had high platelets before but back in 2009 I was discharged with just thrombocytosis diagnosed. Back then they didn't do these mutations and et was not classed as a cancer but things have moved on. Maybe just a bad infection. I don't know. Just wanted to know that if the gene test is done and positive then would most go on to bmb. Going by the answers here most do not. I'm a wuss

[MichaelS]

I think it would be a useful tool for your blood to be analysed and gives a good platform to plan your different treatment options. Sometimes you have to push hard for things to happen.

Very best wishes from Michael

[Notdiagnosed in reply to MichaelS]

Thanks again Michael. I think I'm back here again because my appointment is so close now. Just gearing myself. I would be fairly confident about things if they do the blood tests I think. But there is no guarantee they will. I can only hope.

Just don't want a run around like last time. Backwards and forwards and then normal for you. My gp wrote in their letter this time that after investigation last time no abnormalities were found. They didn't do gene tests though although he said he had done jak2 without my knowledge?? Hmmmm I just had the odd bloods count. They just said I had thrombocytosis that was normal for me. I was discharged like that.

Now I do want to ask as I'm more knowledgeable of this. And hopefully them too. Time will tell.

And if I get there and them say the films showed bad infection I will be complaining to nhs. They could have told my gp that and me not waste an appointment.