Is anyone been diagnosed with acute Leukemia

[Chil67]

I went for a bone biopsy and the doctor thinks I might have it please let me how you’re dealing with it

[bruddery]

I'm so sorry to hear your news, and cannot imagine what trauma you are going through whilst you wait. I know from experience that our heads can go into overdrive when we get any news concerning our MPNs. If there is a positive it must be to focus on the word the doctor used "MIGHT" - hope all goes well for you. Best wishes Janice

[JediReject]

Hello there, I recall your recent first post about your MF with high white cell count. Is your MF diagnosis a recent one because when I was diagnosed MF I too had a very off the scale white cell count and it was suggested I had either MF or Chronic Lymphocytic Leukemia CLL. I stated taking Hydroxycarbamide and the white cell normalised within a couple of months.

What is your Haematologist proposing to do or are you waiting the result.

As for how to deal with it I remember waiting for my results being a very difficult time for both my wife and I but we supported each other best we could, so my heart goes out to you with the worry and sleepless nights you must be suffering.

Very best wishes -Chris

[MCW22 in reply to JediReject]

How high were your white cells? I'm pv jak2 + and been on hydroxycarbamide since beginning of last December. It's brought all my numbers down within normal range except white which is hovering around 27. I also suffer spleen pain and it can be felt on examination at 2cm. I'm wondering at what white cell count is progression likely to occur

[JediReject in reply to MCW22]

To be honest if I was told I can't remember as it was in 2006. I do recall being told they were 'off the scale' and when he examined me my spleen was very palpable at about 12cms. It finished expanding over the years at around 22cms.

And it could of been longer than 2 months to get my whites down thinking about it as we had to adjust my HU dose in the early days.

I know that elevated white cell count is one of the markers for PV and yours remain high at 27 but I don't know if this is a marker for progression or might speed up any fibrosis. It would benefit you to ask your Hem the significance if any of your WBC count in relation to your PV.

And if the HU isn't working for you by December /January maybe have a chat about switching to another drug such as Ruxolitinib.

Good Luck with it.

Chris

[MCW22 in reply to JediReject]

My next appointment is just over a week away so I'll find out if there has been any reduction. Last time my usual consultant said she was reluctant to increase the hydroxy as she didn't want to make me more anaemic. Another one once told me that they wouldn't be concerned if the white count was 30, but I don't know at what count they do become concerned.

Carol

[Rachelthepotter]

Hi. I’ve had some experience in employment law, on the trade union side, and reasonable adjustment means just that. Your employer isn’t being reasonable in saying - all or nothing. They may just be trying it on, hoping you’ll go away.

Maybe a letter saying that perhaps they haven't understood the situation , that ET is a form of blood cancer,

and you’d like them to consider what sort of range of adjustments to your working hours ( if that us what you want) they would consider reasonable.

And see what happens.

Job shares can be tricky, so might be best to agree hours and then think how to use them.

Let us know what happens.

Rachel

[Rachelthepotter]

Hi. so sorry, I put the reply U’d meant for a different post inthe reply box to your post.

I do hope that your diagnosis gets clarified soon. I too have MF, and feel for you.

Rachel

[Bluetop]

I can't give any advice, but can imagine the difficulty you have in waiting for more information. Waiting is a horrible time for you. My best wishes