Hey, I'm new here and have recently been for blood tests, my red blood cell count was slightly raised a year ago as was my platelets, this year the white count has gone up from 12.9 to 13.9 and the red blood cells were 380. I was sent to haematology for a cbc and within a month my white cells are 14.1 and my red cells have gone up to 480. My gp has mentioned leukaemia as a possible cause and also PV, i'm petrified, i'm still waiting on the JAK 2 gene test but I cant function at the moment with stress and worry, has anyone had this that can maybe tell me a little bit more about it. Update...sorry I meant my haemoglobin was 380 last month up to 480 now.
Many thanks
Nicola
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nicky153
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The waiting is stressful but it's all you can do. Once you get the results of the Jak2 you will know what you are dealing with. I'm PV Jak2 positive. At their highest my whites were just over 30, at their lowest 17. Last month 22. I was on hydroxycarbomide for 2 years then changed to Ruxolitinib which has been working better than the hydroxy.
Thank you, Does that mean it is likely cancer then? I thought hydroxycarbomide was a chemotherapy drug? Sorry if i sound dim but this is is all new and very frightening for me.
PV is a type of blood cancer and yes hydroxycarbomide is a chemotherapy drug. What treatment you receive depends not only on your diagnosis but also takes into account things like your age and previous medical history. Don't apologise for not knowing anything about these conditions We've all been in your situation at diagnosis. So much to learn about these conditions and so many big words to learn how to pronounce. I hope you don't have to wait too long for your results and firm diagnosis. This site is an enormous help.
Thank you so much for taking the time to reply, I was just a bit confused as my blood tests were mostly the same this time last year and there wasn't such an urgency. It's kind of knocked me for six.
Hello Nicola, hopefully you will receive your results very soon, as waiting is such a worrying and stressful time. I would advise that you read the information on our website mpnvoice.org.uk about PV and the different medications to treat it, I am sure this will help you. Have you been referred to or been seen by a haematologist at all? Let us know how you get on, best wishes, Maz
Thankyou Mazcd, yes I have see the haematologist but from the answers on here so far i'm guessing that it's cancer. I wonder if anyone has the same blood counts as mine and it's not cancer? I'm waiting on the Jak2 test at the moment I did honestly think that there may have been some with high blood counts that didn't turn out to be cancer.
Hi Nicola, the World Health Organization (WHO) in 2008 reclassified myeloproliferative disorders as myeloproliferative neoplasms, and the information in our booklet about ET and PV is: the word 'neoplasm' (new growth) is a term that has been used both for cancers (malignant neoplasms) and non-cancerous tumours (benign neoplasms). Because ET and PV are characterised by uncontrolled cell growth, most haematologists and cancer organizations do classify them as a blood cancer, whatever they are called though, remember that the symptoms and prognosis can vary widely, your specialist will advise you depending on your individual circumstances.
Don’t worry yourself, maybe easier said than done? Your hematologist is looking into things which is good. I’m jak 2 positive myself. I understand that the waiting and wanting to know is difficult. Best of luck!
Welcome to the forum. It is a club that none of us wanted to join, but all are glad to be part of.
I was diagnosed with Essential Thrombocythemia over 30 years ago. It progressed to Polycythemia Vera about 7 years ago. It may have been masked PV all along. Now at age 65 I am still alive and kicking and have a good life despite having encountered a few challenges of late (not all MPN related). The MPNs were reclassified as "cancers" in 2008 by the WHO. Do not let the "C" work scare you unduly. Many MPNs can be managed for a long time. Many of us live normal to near-normal life spans.
Regarding hydroxyurea - yes it is a chemotherapy drug. Some people tolerate it. Others do not. There is good news in that there are other options. Many docs now prefer PEGylated Interferon or Ruxolitinib for many patients, especially those under the age of 60. Many PV cases can be managed with phlebotomy-only and do not require meds (other than maybe aspirin).
It sounds like you are on track to find out what is going on. The waiting for results stinks, but it will be over soon. What you are describing sounds consistent with PV, but there is no way to know until your assessment is complete. You should have received: CBC, CMP, von Willebrand Panel, PTT/aPTT - INR, JAK2 Mutant Allele Quantitative Analysis. Sometimes the docs will first check to see if the JAK2 mutation is present, then do the quantitative analysis later (% of hemapoietic stem cells with mutation). There is other testing, including a bone marrow biopsy that may be done.
It is really important to consult with a MPN-Specialist. Many hematologists do not have the KSAs regarding MPNs to provide optimal treatment. MPNs are rare disorders and many docs have only seen a small handful in their entire careers. Optimal, individualized care is provided by docs with the requisite expertise. Here is a link to MPN-expert docs mpnforum.com/list-hem./ .
I do hope you will get answers soon. It is scary to find out you may have an MPN, but it is something that can be dealt with. Fear is normal, but do not let it immobilize you. I will close with one of my favorite quotes from Frank Herbert - Dune.
"I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past, I will turn the inner eye to see its path. Where the fear has gone, there will be nothing. Only I will remain."
Hi Nicola,
Around 6/7/20 I had blood work results with elevated RBC 5.79, Hemoglobin 6, Hematocrit 50.3% and was referred to a hematologist. Prior to this, Ive experienced a full blown body itching that lasted for 10 days. I was on birth control during this time, since 1/02/20. However, I stopped the pill and after having my first mense in 6 months, the rash stopped. 2 weeks later, I did more blood work at the hematologist for Jak2 mutations And other stuff (I can find the list of tests if you’ want to know more). Turns out it was a false alarm. All blood work came back normal, mutations negative. Just my hemoglobin was low. I have always been severely anemic, hemoglobin of 3.4 in 4/20/19 from heavy menses due to uterine fibroids. Went through 3 surgeries, last one in 1/02/20 to remove one fibroid. Like yourself, I was petrified at the beginning. But this site has been amazing in giving me information. Everyone is so kind on here and their stories and tips are extremely useful. I am wondering if you’re on any medications that may have caused the blood counts elevation? But regardless, I hope you can find your results soon. My mutations came back after 10 days (US), which was much earlier than expected.
Thank you so much MiniBlue18 for sharing your experience, its kind of made me think, I have had 3 miscarriages in the past and had quite a few blood tests at the time one of which said I had sticky blood, I was told that I should come to the early pregnancy clinic immediately to have treatment if I got pregnant again, I never did try again so never really followed it up. Since I started my periods at 15 they have been horrendous they sometimes lasted 12 weeks and they were debilitating. The only thing that has stopped them is norethisterone 3 times a day. (I have been on them for around 3/4 years now so no periods) but if I miss even one dose I start bleeding. I have to go back to the hospital for a biopsy just as a precaution before they will give me an ablation. I tried to come off them but the pain and bleeding was just horrendous to the point of having to call an ambulance. Since then I have been petrified of coming off them again. You say your mutations came back after 10 days US I'm not sure what you mean,? Did your blood tests start going abnormal again? Again thank you for your reply and I'm sorry to be so graphic but your comment made a lot of sense to me. I do also take antidepressants which I've heard can elevate the bloods sometimes but what a minefield! All the best to you.
I’m glad you read my reply. Sorry about the confusion. What I meant was that my hematologist said the JAK2 mutations results typically take 3 weeks to come back in the United States which is where I’m from, however, my results came back after just 10 days. This was when all the results came back normal, mutations negative, only hemoglobin was low. I was recommended to take iron pills, and no further follow up needed. Also, I must add, starting 10/ish/19-12/20/19, I would be given IV iron infusion periodically to get my hemoglobin up to a normal level before they can perform more surgeries on my fibroid (they said it was big). During these months, whenever they check my blood count again, the RBC specifically would be slightly higher than normal, like 5.91 (3.70-5.4 being normal), of course I thought maybe it was just from the iron transfusion. Then 2/19/20, about 3 weeks after my 3rd surgery, the RBC was 5.64, still slightly high (maybe they gave me too much IV iron..?), but all other counts were normal. OB was never concern about the RBC being slightly high. I was put on birth control that day to prevent further heavy menses, then around 6/02/20, that’s when I started to have a full blown body itch, hot/painful feet, which were symptoms of PV. You have a very unique history, and I am truly sorry about your miscarriages With your white blood count being high, I hope they have performed tests to rule out infection. Initially(6/7/20) my Family Physician office couldn’t find any source infection after extensive testing, they took 6 big tubes of blood. However, I did notice that my white blood cell count was elevated, still normal range, but noticeably higher than the past, by almost 4 value higher. I’m usually normal on the lower end. I hope this helps.
MiniBlue18 Thank you again for your reply, you have certainly given me a lot to think about and ideas for questions to ask at my next appointment, I did find one study that was done on the effects of norethisterone on the blood and it was shown to raise RBC in the majority of women taking it, it was an old study but the only thing I could find. I'm so happy you got your answers, who knew it could be so complicated. I haven't been checked for infection but did have a very painful knee which developed into a bursitis 1 week after my cbc, currently taking antibiotics for it. I guess I'll know more when the JAK 2 test comes back but I'm beginning to realise it's not as cut and dried as I had originally feared, so many factors to take into account. Thanks again for taking the time to read and answer, all the best, Nicola
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With your white blood count being high, I hope they have performed tests to rule out infection. Initially(6/7/20) my Family Physician office couldn’t find any source infection after extensive testing, they took 6 big tubes of blood. However, I did notice that my white blood cell count was elevated, still normal range, but noticeably higher than the past, by almost 4 value higher. I’m usually normal on the lower end. I hope this helps. 
High white blood count
decreasing white blood cell count
Small red blood cells and low iron levels
Understanding your blood test
RED BLOOD CELLS
