diagnosis

[Carthe]

hi I would love to get an idea of blood levels and symptoms and age (if you want to tell that) at diagnosis? X

[hunter5582]

I was diagnosed with ET when I was in my mid-30s. It was based on CBCs with PLT in the mid 800s. That was 30 years ago, before we had the test for JAK2. I never had a single incident of thrombosis but did tend to bleed/bruise more than normal, particularly when my PLT levels were higher. The ET progressed to PV about 9 years ago, which we know from the HGB/HCT being above normal limits. I did experience some erythromelalgia (AKA "PV toes") when I was off aspirin.

The main symptoms i have experienced are secondary and I believe are related to the proinflammatory environment caused by the JAK2 mutation. I have a number of inflammation-related issues including: osteoarthritis, tendonitis, plantar fascitis, eczema, insomnia. Systemic inflammation in not a good thing.

You will likely hear a very wide range of answers to your question. People manifest the MPN ata wide range of ages, though most often later in life. Symptoms range from minor to disabling. MPNs are complex disorders and each case is unique.

All the best.

[EdwinaJ]

Hi. I was diagnosed at age 69 with platelets at around 1000. Triple negative.

[Carthe in reply to EdwinaJ]

thanks edwina what does tripper negative mean?

[EdwinaJ]

it’s triple negative meaning I don’t have JAK2 or the other mutations. Hope that helps

[Carthe]

thanks Edwina im knew to this… also a bit confused if they couldn’t fine a gene do they not assume it’s secondary ET? And keep looking for the reason it’s elevated?

[Nickthedevil]

I was 57 at diagnosis 10 years ago with ET, Jak2 positive. My platelets were 1200. I was put on hydroxycarbamide and aspirin immediately due to existing cardiac issues. Platelets now sit at around 400. Fatigue is the worst side effect. Karen

[Lena70]

Diagnosed at 49 with platelets at about 700 and JAK2+. Hematocrit was normal. Three years later and my hematocrit is now up.

I was diagnosed after searching for answers to fatigue. Because I would get a flushed face that looked like a Lupus butterfly rash, I was first referred to a Rheumatologist. Took about six months from that point to get referred to a hematologist.

At diagnosis, I had fatigue, headaches, bright red cheeks, and itchiness.

[Carthe]

thanks for replying I really appreciate it. - I do get a really burning red face in the cold as do my hands and any exposed skin but thats just when it’s freezing outside and actually that for a bit better this winter…. Where is your itchiness and is it water related. The only other red clad I have is ringing in my ears… but my platelets are relatively low so I don’t know why that is? I put it down to my age!

[Lena70 in reply to Carthe]

The itchiness is everywhere and comes and goes. I can’t connect it to anything I do, but when I’m itchy, I take quick showers as water does make things worse.

I had a laser face treatment on my cheeks and now it flushes much less. The laser ablated small vessels near the surface of my skin. I consulted a dermatologist about this problem and am so glad I did. Now when I flush, it just looks like a soft pink glow. The laser treatment was called Broadband Light.

[saltmarsh]

About three years ago a regular physical at age 73 showed elevated platelets. Went to hematologist for blood work, then bone marrow biopsy jak2 positive and pv diagnosis. My primary symptom has been fatigue with a few curve balls including anemia and iron deficiency. Initially controlled with phlebotomies, then added hydroxyurea. Phlebotomies stopped 7 months ago and now on 1000 mg/day hydroxyurea. Numbers are stable but you will see from following this forum everyone has a slightly different path. I switched doctors 9 months ago because he dropped the ball and that change made a huge positive difference. Do your research, follow this forum and be an aggressive advocate for yourself. Best wishes.

[Carthe in reply to saltmarsh]

hi thanks for reply - can I ask about your rbc count - was that raised a lot on diagnosis? Thank you

[saltmarsh in reply to Carthe]

Yes, at the onset, the RBC was high at 7.06 and hematocrit at 57.1. I had a series of phlebotomies which didn't really do much for the RBC. In fact, after a year of phlebotomies the RBC was slightly higher but my (now former) hematologist who was also the head of the Department of Oncology indicated to me that the RBC was less important than other numbers. 15 months later I started with a low dose of hydroxyurea and that brought the RBC down. While it seems phlebotomies are the first line of defense I am personally not a fan of them because, IMHO, they put your blood on a roller coaster, not unlike driving a car with one foot on the gas and the other on the brake. Last Fall I switched doctors, and my new doctor stopped all phlebotomies and continued with hydroxyurea only. Fast forward to today and I'm taking 1000mg/day of hydroxyurea and currently all my numbers are good. I caution you to take my situation as unique to me. From the forum we all see a wide range of treatments which can work. One common thread here is that there are many treatments but finding the course of action which is best for YOU is the key. This forum has been incredibly helpful on the journey. Good luck moving forward and stay positive.

[LIGEBA]

Hi Carthe. I was officially diagnosed at 59 but it turns out my issues started 2 years before. I'm prone to kidney stones and had an unusual situation where both ureters became blocked at the same time. I ended up with sepsis and in critical condition in the ICU for a bit. Had 3 surgeries over 3 months to correct the kidney stone issue and that's when I started noticing symptoms. First my calcium level was high along with my PTH (parathyroid) level. This led dr.s down a path of parathyroid tumor but I ended up never getting tested (didn't want to do the test), but the dr.s ran a lot of other tests that led them to a MGUS diagnosis (prelude to Multiple Myeloma). No treatment - just watch. I never returned to myself and felt awful all the time. The most annoying symptom was the extreme fatigue. Prior to all of this I had been a very high energy person who required little sleep. I couldn't sleep. I had extreme bone pain, thigh pain, hip pain, burning feet, muscle cramps, racing heart, breathlessness, stamina issues, brain fog, blurry vision, headaches, itchy hands/feet/back/neck, low oxygen during the night and terrible depression & anxiety.

I started seeing a hematologist for the MGUS but he never caught the PV. None of my dr.s did (and I was seeing many). I finally pulled up all my bloodwork and tests from my ICU stay forward and analyzed them over many months (it took me that long due to all the symptoms I was having). I finally discovered a trend of my RBC, HGB, HCT & Platelets continually rising and never dropping back down. I was able to note the exact date something changed. My WBC was the only one that fluctuated between high and normal (and still does). I brought my research to my hematologist and he ran the appropriate tests which came back JAK-2 positive.

He explained my options regarding phlebotomies or going on Hydroxy. I chose the phlebotomy route and had one done in 2021. Prior to it my numbers were RBC 5.89, HCT 48.9, HGB 15.6, WBC 9.1, Platelets 600. 4 months later my numbers were RBC 5.98, HCT 48.2, HGB 15.7, WBC 9.6, Platelets 670, so not much of an improvement. I had consulted with an MPN specialist at a top cancer hospital and eventually was put on an every 2 week phlebotomy schedule, which I continue to follow. The dr. would have preferred I go on Hydroxy but I refused (I had Merkel Cell Carcinoma rare skin cancer years ago). It was a major struggle finding veins, getting blood to flow, and hoping it didn't clot because my blood was so thick by that point. Now I usually get a phlebotomy, then skip the next month because my HCT is below 42 but still get tested every 2 weeks. My current numbers are RBC 5.51, HCT 39.9, HGB 10.8, WBC 9.8, Platelets 530. My MCV, MCH, MCHC are all extremely low as is my Iron, Ferritin, and Transferrin. I'm still exhausted but at the suggestion of another of my dr.s, I now have a small steak once in a while and do feel better for a bit.

This was a great question to ask Carthe because I think it's something all of us like to know (especially newly diagnosed folks), to give us an idea of where we fit in with all of this. Even though we are all different due to other factors it's still helpful to hear other's journeys.

[Otterfield]

I was diagnosed with ET at 39. I had a routine blood test for a persistent "virus" and was found to have raised platelets. The only symptom before this was an almost daily headache which I had assumed was stress related. As soon as I started a daily aspirin, the headaches stopped. I don't know what my counts were.

[Carthe]

hi Otterfield thanks for replying I’m so nervous and worried I have barely any symptoms so just so unsure what to do. I do suffer with Generalised Anxiety Disorder and a lot of stress so wondered if it could be that as it’s only just above normal? But I can’t find anything to reassure me with this. In fact the opposite everything points to cancer

[Otterfield in reply to Carthe]

Anxiety is like a curse isn't it? My brain seems to seek out things to be anxious about - once i have been reassured about one thing, another rises up to take its place. I know it's easy for me to say, but ET really isn't anything to worry about. Have you ever had sessions with a counsellor? I believe that CBT can be genuinely helpful in keeping things in perspective.

Very best wishes, Jennie

[EANgardengirl in reply to Otterfield]

I agree, counseling really helped me to get through my diagnosis of ET and the fears I had in taking Hydrea. At first it is a lot to process. I’m calmer now, but still dealing with high numbers and some HU side effects. It will get better. Therapy helps!

[Anouchka]

I was diagnosed with PV in May 2022 with platelets at 886 (gigs/L - when normal level here is supposed to be between 150 - 400) and red blood cells in abnormally high counts too. I was 74. I was confirmed as having the JAK2 gene.

Severe itchiness, tightness in legs and red blotches plus very red palms of both hands (in upright position), bruising easily led to my GP sending me to my hematologist for confirmation of what he thought this could mean…

And just for info, over and above your specific interest, Hydrea did fine at first and was good for red blood cells, but platelets remained stubborn. Jakafi now has stabilized both to an “acceptable” level.

All the best to you.

[Wyebird]

I started with fatigue about 10 months before diagnosis age 59 . I just thought I was anaemic. Two routine high platelet blood tests were dismissed and a 3rd before an op in a pre op assessment also ignored. After that and recovering from op extreme fatigue sent me to a nd e. Which led to a referral because if high platelets. Diagnosed about a week before my 60th birthday.

[Solyesh]

Was officially diagnosed with ET Jak2 at 49 via BMB but I had elevated platelets for at least 7 years prior..(annual physicals) in fact it was the constantly rising platelets that led my GP to refer me to a hematologist (who happened to be an MPN specialist). My platelets had gone from about 580 steadily rising to about 900 by time of official diagnosis. My GP had actually put me on aspirin at year two after two consecutive elevate platelet counts. My main symptom at the time was red, hot tingling in hands and feet and some fatigue.

[Joetcalr]

Platelets 1650 , strange sensation in my legs, age 60

[kevmince]

I was about 28 , platelets were almost 1100 , I had felt like I had the flu that I couldn't shake , aches and fatigue . Hydroxy has controlled platelets well for 25 years, I also take aspirin

I also had platelets in 600 in blood test taken for similar reasons at 17 , but was never chased up , just one of those things , drs said

[Carthe in reply to kevmince]

thanks Kevin - sound like a positive story - how have you been during that time? And chronic symptoms etc?