Asymptomatic!! Feel great! Should I wait?

[BrookTownsend375]

I am female 76, take no medications, asymptomatic, my platelet count is 760,000.I asked GP my Dx. He said there is no dx you are great. Red BLood cell count 1 over normal. I donated blood to get rid of RBC's. Blood Center called saying thank you for donating, but we cannot use it. It clumps, can't filter it. Discuss this with your doc if this is right for you next time you see him. I have routine mammo and bone scan scheduled, will have CBC and see him in June. No symptoms, no treatment, right? I am so happy and glad to be alive. Covid raging in US. Staying home, out of trouble.

[Faith33]

Hello, It is great to hear that you have no symptoms and I think you said your GP says no need for Chemo...? I am 65yrs and was diagnosed just over 2 years ago. My platelet counts is 'stable ' around 600 and 750 over past 2 years. I find if I stick to a healthy Mediterranean diet my platelets come down. I have opted out of taking Chemo. I too have no symptoms and feel OK. Long may we feel healthy and survive!

[BrookTownsend375 in reply to Faith33]

Thanks for tip on diet. Glad its possible to stay stable. I take absolutely no medication for anything. GP does not even acknowledge high platelet count which is 760,000, but wants my cholesterol lower. May start a statin when I see him in June. After I wrote in for advice, I bought enteric baby aspirin and put them in purse, in car, in kitchen, near bedroom, in case I need it in a hurry. But I don' take it now. I think you calmed me down, I'm good.

[Deefen in reply to BrookTownsend375]

You should still take a daily baby aspirin as a precaution against blood clots - they help prevent your blood ‘sticking’ - don’t wait until you have an issue to take them

[falconered53 in reply to BrookTownsend375]

Just an aside related to your comment about keeping enteric coated baby aspirin at hand for an emergency ( I assume you mean sudden heart attack symptoms.) While enteric coated aspirin is what we MPNers need on a daily basis to prevent heart attack, the kind needed in an emergency is NOT enteric coated. It needs to dissolve and get into the bloodstream immediately. The enteric coating prevents that!

[BrookTownsend375 in reply to falconered53]

Thanks, didn't know that--I'll remember, I have both.

[hunter5582]

That does not make sense. The symptom diagnosis is thrombocytosis. Based on what you describe, in the absence of an underlying condition that would cause secondary thrombocytosis, then the likely diagnosis would be Essential Thrombocythemia. Since you found your way here I am thinking you already know this. There should be a rule-out of masked Polycythemia Vera as well. The PCP could certainly start with a basic driver mutation genetic test looking for the three driver mutations (JAK2, CALR, MPL),

Diagnosis and treating MPNs is beyond the scope of a PCP. Most hematologist lack the KSAs to proved optimal care for MPNs. I would encourage you to see one. It is important to involve a MPN Specialist in your MPN care. here are some lists.

Worldwide mpnforum.com/list-hem./

USA pvreporter.com/mpn-speciali...

[BrookTownsend375 in reply to hunter5582]

Thank you for helping me. But does the fact that I am 76 yr old female of northern european decent enter into this? It is a disease of the elderly. Most hematologists lack the KSA's for optimal care. What are KSA's.? You sound like a very informed scientist . I have made note of 4 doctors from that list you gave me in MA.

[Scaredy_cat in reply to BrookTownsend375]

Your figures are not normal. If you read stuff on mpnvoice you will see it is a disease that can affect younger people as well. You definitely need to consult a mpn specialist. No symptoms does NOT mean nothing to worry about. BTW aspirin is not something for an emergency, it is something that many of us have to take regularly

[Peachjoy in reply to Scaredy_cat]

I agree from my own experiences so far. I’ve been on baby aspirin, one a day, everyday, for 16 years. I am also asymptomatic (I think), my haematologist wants to put me on Hydroxycarbamide because of my age (62)

From all advice on here I am now waiting for my appointment with a worldwide MPN specialist (in 2.5 weeks time).

Need to make the correct, safest and most informed decisions.

[SoledadBarcelona in reply to BrookTownsend375]

Hunter5582 is right. You must check your genes and even a mieloid panel. The problem here are the genes. You have some symtons, according to you description. High cholesterol is one of them.

[hunter5582 in reply to BrookTownsend375]

Your age does enter into the decisions about how to manage what appears to be a MPN, possibly Essential Thrombocythemia. Ethnicity and gender are not directly relevant. Age is one of the risk-factors that must be taken into account along with cooccurring medical conditions. The age-based risk protocols typically start at age 60/65. Most docs do use this, but not all agree that age is the issue per se. We do, in fact, all age differently. This is part of why it is so important to see a MPN Specialist. MPNs are rare disorders. We each need an individualized approach to care. Most hematologists lack the experience to individualize MPN care. They have no choice but to blindly apply the existing treatment protocols. This is not in the best interests of people with MPNs.

This is not a disease solely of the elderly, though it is more common in older people. The driver mutations that cause MPNs are acquired somatic mutations. It was recently discovered that these mutations are acquired early in life but do not manifest as a disease until decades later. The JAK2 mutation is the most common driver mutation. JAK2 mutated hemopoietic stem cells (HSC) have a clonal advantage over wild-type (normal) HSCs. Over time the percentage of mutated HSCs tends to increase. The JAK2 mutation causes these HSCs to self-phosphorylate - the on switch is always on. HSCs are the progenitors of all of the blood cell lines. That is why we can end up with too many platelets, red blood cells, white blood cells - or any combination of the three.

All three driver mutations deregulate the JAK-STAT pathway. This does more than drive up the production of blood cells (hematopoiesis). It also causes our bodies to make too many inflammatory cytokines. This is thought to be responsible for many of the secondary symptoms we experience. At the core, MPNs are inflammatory disorders.

It should be noted that the issue is not just about how many platelets you have. Platelets account for less than 1% of your total blood volume. What is more important is how the blood cells behave. With MPNs the blood cells appear to be "extra-sticky". They can be more prone to sticking to each other or to the vascular endothelium. They can also stop clotting when they should. That is why we can have thrombosis, hemorrhage, microvascular symptoms - or all three.

MPNs can manifest in a wide range of ways. We are not all the same even though we may have the "same" disease. Managing a MPN can be quite complex and requires specialized knowledge and experience. We each have to educate ourselves and then advocate to receive the care we need. Educated and assertive patients receive higher quality are. Uneducated and passive patients do not.

FYI - I am a scientist of a different type. My background is in clinical psychology. My own health journey over the last couple of years has presented me with many unique and interesting learning opportunities. I learned the hard way what happens if you do not educate yourself and advocate for the care you need. That is a lesson I have taken to heart, thus I have educated myself about MPNs after ignoring it for many years.

Here a a few more resources you may find useful.

legeforeningen.no/contentas...

mpnjournal.org/how-i-treat-...

mpninfo.org/conferences/202...

youtube.com/watch?v=zHwTIJb...(Not working as expected?)

All the best to you as you enter this journey.

[BrookTownsend375 in reply to hunter5582]

Thanks, you and that film really helped. Now I feel that this is something that can occur simply by being old. I was very lucky to have no health issues until I reached 76. No complaints! The reason I am proactive is that my husband died of a heart attack at 72, and didn't like to ask questions, wouldn't see a doctor. I have been widowed for 18 years. He would have loved his grandchildren. I appreciate your taking the time to help.

[hunter5582 in reply to BrookTownsend375]

I was diagnosed with ET in my 30s - about 30 years ago. It progressed to PV about 8 years ago. MPNs can be managed for a long time. We just need to make the right choices to do so.

[BrookTownsend375 in reply to hunter5582]

Knowledge, Skills, Abilities, got it

[SoledadBarcelona in reply to hunter5582]

Hunter5582. This is an oldest list. There are too much doctors who are retired in 2022.

[hunter5582 in reply to SoledadBarcelona]

Unfortunately it is the only world-wide list that i know of. I think it was one of the docs in Spain that you mentioned had retired. Let's be sure to let the folks at MPNforum know so they can update their list.

[Deefen]

I’m asymptomatic too and only on aspirin - my platelets hover around 1000 and all my other bloodwork I’d fine. I’m 65, exercise daily and stick to a keto diet. At my last appt my haem said he didn’t need to see me for a year!I was told right at the beginning of this MPN journey that I could never donate blood again - which wasn’t an issue as they didn’t want it due to my previous bouts of malaria when I lived in New Guinea

[patriciapugliese in reply to Deefen]

My platelets were at 960 when my doc called for an emergency appt with a hematologist who after confirming that number and a jac2 V617 positive result he immediately put me on aspirin and hydroxyurea 500 mg per day. I'll test again in about 10 days and I'll let you know.

[Peachjoy]

I am also asymptomatic, most recent platelet count 633, but apparently according to WHO protocol, I should be on Hydroxycarbamide because of my age (62)From advice, I am due to see a true specialist of MPNs very soon.

It is a matter of balancing being/feeling fit and healthy right now, and potential health risks in future.

[Aldebaran25]

Hi, I too was pretty much asymptomatic (except for the odd headache) when I was diagnosed with PV at 57 after a general blood test. Just out of pure luck, my doc sent me to a hospital that happens to have a specialised MPN haematology dept, so that I was from the start under the care of "experts" with a lot of experience on these rare cancers. I was initially put on low dose aspirin and had blood draws to control the RBCs. The point of the aspirin is to make the platelets less sticky, it is preventative. The real danger with MPNs is that they are sneaky conditions, which can manifest with a clot that can kill or disable . That is the short-term danger, whether you are asymptomatic or not. The longer term danger is the progression to more grave conditions which can happen whether you are symptomatic or not. I remember asking this to Dr. Ruben Mesa (one of the leading specialists) at a patients conference , hoping that my being asymptomatic meant I was unlikely to progress, but he said absolutely not, the disease can turn. So please, do not underestimate your diagnosis. Most of us will have long and active lives, but it is important to manage and keep under control our condition under specialised medical supervision.

[jointpain]

I cannot for the life of me understand why so many are saying that they are asymptomatic while their platelets are approaching the 1000 mark! The whole idea of bringing your platelets within normal limits is that you do not have a catastrophic bleed or a stroke, which is highly likely the longer you continue to be asymptomatic with this dreadful disease. My wife was asymptomatic for years until she nearly died of a burst spleen and lost a kidney through it clotting. If only she knew and had been treated her quality of life would probably be better now.

So please don't extol the virtues of "being asymptomatic" when just around the corner could be something you hadn't bargained for.

[BrookTownsend375 in reply to jointpain]

Oh, believe me I agree--I want to take action I would never have known unless the Blood Center said my blood was clumpy and sticky and they were unable to filter it. It was my idea to donate to get rid of my rising red blood cells, I tried to go every 8 weeks. I think PCP's find it IMPOSSIBLE to explain to ordinary folks and just don't want to rock the boat, then its too late. I know I'm going to die as everyone else is--I just don't want it to be messy, like I don't want to have a catastrophic bleed while I'm driving, and hurt other people. I want to die classy--with people saying at least she tried.

[Meatloaf9]

HI, in 2018 my platelets hit 550, they had been going up by about 20K to 30K per year for the prior 10 years. I kept asking my GP about the increase and he kept telling me not to worry about it until they hit 600K. I called a Heme/Onc that I knew and he said come in for some blood tests. I did, I was Jak2+, had a BMB and was diagnosed with ET. I had no symptoms or treatment until spring of 2021 when my RBC's, Hct, and Hgb started going up and a EPO blood test (low) confirmed that I had PV, and probably had masked PV back in 2018 and should have started treatment. I lost 3 years of potentially beneficial treatment . I am 72.Please consult with a Hematologist or MPN specialist, it will be beneficial. Best to you.

[william-Indo]

I also asymptomatic and found my PV from routine medical check up, where the platelet up to 700.Following doctor's advice, go to hematologist to do the bone marrow.

Do the test is the best and take the Aspirin daily is good for prevention even if the result is normal.