High white blood cells

[Cja1956]

Hello, all, I had a check-up with my hematologist the other day. My concern was that for the first time in 11 years, my wbc was pretty high (16.3). They’ve always been normal. My red blood cells were all low (I’ve had anemia for a while now) and my neutrophils were also high for the first time. My concern is progression to MF. Any thoughts?

[Tinkerbell13]

Hi, really replying to you, as always hard if none appear!

I have found the haematologist's secretary v helpful, if I explain my concerns to her and she puts a note for the haematologist who then telephones me, if a long time between appointments....wonder if you could try doing the same, so you don't go on being worried....there may well be a very simple straight forward explanation for the change in your wbc and it is a shame if you have months of worry, when it can be explained to you sooner. Best regards, Tinkerbell

[Cja1956 in reply to Tinkerbell13]

Thank you, Tinkerbell, for your kind reply. I read that you are going through a difficult time, as well. I hope that things improve for you, soon.

As to my blood test results, my hemo took a more complete panel on the same day to try to determine the cause of the rise in wbc counts. I will get those results next week. If I’m still not getting satisfactory answers, I plan on making an appointment with an mpn specialist for a second opinion.

Thanks again for taking the time to respond to me. Wishing you all the best. 💐🌺🌷

[Tinkerbell13 in reply to Cja1956]

Thank you so much and really hope you get that all important help....I am blessed with a very understanding and patient haematologist and so hope you can have similar.

Very kindest regards...and hope you will keep us posted how you are doing. Tinkerbell

[Cja1956 in reply to Tinkerbell13]

Thanks and you do the same.

[hunter5582]

Various possibilities to explain the leukocytosis. Could be a response to an infection. Could also be progression of the MPN, but would think PV-related more likely than MF-related. If you also have thrombocytosis, the leukocytosis increases your risk of thrombosis - so definitely follow up on it. Hope you get an answer ASAP.

[Cja1956 in reply to hunter5582]

Thanks, Hunter. I hope you’re right.

[MCW22]

My white cells have been consistently high since my pv was diagnosed in Sept 2017. I too was worried about progression especially when they hit 30. I had a bmb and was told it hadn't progressed, yet some of the wording in the report seemed to be conflicting so I just take it that I'm OK for now but I'm not ruling out the possibility of progression later

[Cja1956 in reply to MCW22]

Yes, that’s something most of us worry about, unfortunately, even though it’s rare. I’m glad you’re ok. Hopefully you will stay that way.

[Xuzy in reply to MCW22]

How high is your WBC now ?Any changes in your bmb ? Sorry to ask on an old post

[Cja1956 in reply to Xuzy]

So, since that post was written, I did get a diagnosis of myelofibrosis not long after. At the moment my white blood cell count is 15.6. It had been normal for a couple years, but it started increasing again last August.

[Xuzy in reply to Cja1956]

I see. Are there any other pointers to indicate myelofibrosis. My WBC is between 12 to 14 sometimes 18. I'm worried about progression. And how often did you get a bmb?

[Cja1956 in reply to Xuzy]

Sorry, I didn’t see this question. So my first BMB was in 2008 when I got diagnosed with ET Jak 2. I’ve had three since then, starting in 2019 when i found out I had progressed to MF and 2 more to determine if I’m a candidate for a stem cell transplant. My hemoglobin was 8.7 and I had very high platelets. I was diagnosed at intermediate one at the time, but I have progressed to intermediate 2/high-risk.

[MCW22 in reply to Xuzy]

Hi Xuzy. I haven't had the results of my last blood test yet which was 4 weeks ago. The one 2 months before that, my whites were 27.8 Red 4.12 Hb10. 7 Hct33. 1 Plts193 Blasts 0.28 NRBC 0. 14The report also said

Basophilia

Immature granulocytes

Giant platelets

Hypochromasia, anisocytosis, poikilocytosis

Blast cells

I've only ever had one bmb.

At my last phone consultation I asked the question, was my PV progressing and I was told no.

I should imagine that if they request another bmb that might be an indication that they suspect progression. Personally I'm still not convinced that there isn't some progression. One blood test in the past mentioned tear drop cells, and one letter said to continue with the ruxolitinib for the myelofibrosis. Whether that was a typo or whether they suspected progression I don't know. The bmb mentioned features of disease evolution. Evolution means progression doesn't it.

I am still taking 20mg of ruxolitinib per day. 2x5s in the morning and the same again in the evening.

As far as my PV is concerned I suppose I feel OK. My biggest problem is the pain from the 5 spinal fractures I've had over the last few years.

How are you doing?

Carol

[Xuzy in reply to MCW22]

Thanks for the reply MCW22I was diagnosed pv in 2018 and my WBC keeps getting high to 14 sometimes and drops to normal after phlebotomy. I keep asking if this is any concern but my doc doesn't say much. I'm otherwise doing fine.

But as far as what you are telling i think there are some sure signs of progression at it's beginning. But ruxo is the treatment for it so i think they know what they are doing. Even then if you aren't already seeing one visit an mpn specialist for this and they might try to increase dose on rux or give other drugs because i heard mf these days has lot more drugs available than ever before

[Cja1956 in reply to Xuzy]

I’ve been seeing a MPN specialist since 2019. That is how I found out I had progressed to MF from ET. My original hematologist didn’t want to give me another bone marrow biopsy, and I felt my health was deteriorating. Anyway, I was on Ruxo for about three years before I saw my new doctor and she took me off of it because she felt it was contributing to my anemia.

Hope you are doing well.

[ccsial]

My white cells were high for a couple of yeas before I transformed to MF.

[clubdino]

Hi Cja...I was wondering how things are going? Did you have to schedule an appt with a MPN specialist?

[Cja1956 in reply to clubdino]

Hi, clubdino,

I just now saw this. I’m so sorry I didn’t reply sooner. Maybe you saw my later post. But just to fill you in, I decided finally to find a new doctor and I found a really great mpn specialist in September. I had my second BMB in 11 years, extensive bloodwork, and an ultrasound and she told me I was in the early stages of myelofibrosis. In November, She booked me an appointment with a bone marrow transplant specialist for a consult. I see my new doctor now on a weekly basis. Just trying to keep positive and continue with as normal a life as possible.

[clubdino in reply to Cja1956]

Hello. It's ok...I figured you didn't see my post. I did see where you progressed to MF. I'm so sorry about that. It sounds like you really like your new doctor. That makes all the difference in the world. I think you have the right idea about remaining as positive as can be. They are making great advancements these days. Sending you positive vibes. XXX

[Cja1956 in reply to clubdino]

Thank you.

[Kelly2]

Hi. Mine were the same on my last test. My doctors answer was that it tells us "I am here!"