I was diagnosed 2009 (or thereabouts) with JAK2 mutation discovered after BMB because of enlarged spleen. Platelets have been around 450-500 for all those years except for a couple of 570ish. No medication. No discernable symptoms.
Now I am 71 and my GP wrote to blood clinic asking if I can cut blood tests down from every 6 months to once a year and wouldn’t you knowit, the consultant wants me to go on medication because of my age.
My problem is that I have had stomach cancer and have Ulcerative Colitis. This means no aspirin and all the medication I have seen has gastric/digestion side effects.
The clinic is being understanding and have decided on a watch and wait.
My last platelets were 536. Other bloods normal.
My question is, in your experience, how high do most consultants consider platelets can be before medication is mandated? I have read up to a million but not for people over 60.
Sorry for long post. Any advice/opinions welcome.
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Franju
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my team at Norfolk and Norwich all have different opinions on what level platelets should be before giving meds . Some say 600 some over 500 .
Risk factors do increase as we age .
That’s why I listen to all views , look at blood tests and my symptoms and make an informed decision . I’m lucky to have a wonderful Ayurvedic practitioner as well
How do you feel about starting meds?
I would want bloods monitored every 3 months not 6 . And express wishes to consultant
Hi Sorry for delay in replying. Life. I don’t want to start meds as I have enough trouble controlling digestive issues already. Also I have read recent studies that only recommend meds over 1 million.
Mutations occur everywhere and anytime, but many mutated cells are recognized and eliminated by the body's immune cells. There are many mutations. In fact, those mutations occur in invalid gene segments. I mean that even the most serious mutations of those invalid genes will not make people sick, because many of the human gene segments are blank and useless, but we are quite unlucky, and the mutations occur in important areas.
Have you considered Clopidogrel as an alternative to Aspirin? I take it with Lansoprazole - a Proton Pump Inhibitor, to protect the stomach - as I was told it’s gentler on the stomach than Aspirin.
👋 I'm going to answer based solely on my journey with ET and PV.I was diagnosed with ET in 2016, after a routine CBC for an upcoming hip surgery. I chose to deal with the surgergy first then the other at a later date. At the time my platelet levels were in the low 500s and I was 58. As is true with most Rheumatologists, it was strongly urged that I start on Hydroxyurea-usually the first choice of lowering platelets to an acceptable level.
I have since been diagnosed with PV and it seems to be responsible for many of my symptoms and discomfort. I have regular phelbotomies to lower the hematocrit levels and to help with the discomfort.
I am 69 and have elected not to go on Hydroxyurea. My platelet levels bounce between 900-1200. I tried Hydroxyurea a year ago with disastrous results...never again! That being said, many on this site have experienced little if any side effects from Hydroxyurea. It always amazes me that Rheumatologists are so quick to start their patients on this toxic drug when their platelet levels are within an acceptable range! I believe the WHO has increased that range recently?
I take Aspirin daily along with other supplements prescribed by my Natropath. I also have changed my diet to exclude refined sugar, most wheat and dairy products and include some form of exercise daily...yoga, meditation, weight training, gardening. This is to help eliminate the inflammatory response that accompanies these cancers.
In truth, what I'm trying to say is, this is such an individual journey. Find a specialist in MPN cancers, find someone you respect and who will respect your choices on how you wish to live. Do your research and be comfortable with your choices. I don't advocate that anyone follow my choices...these are mine.
Hi there I have had et and now mf for 25 years ,I've learnt not to worry unless my bloods (platelets) are over 600 or 700 , if I try to get it down to normal levels I feel worse from the meds than having my blood in a completely normal range. My heams all know we don't try anymore ,take it easy nick....
platelets at your level are not concerning in isolation, not taking aspirin is a added risk, it also depends how fit and healthy you are otherwise,I wonder if there are alternatives to aspirin you can try eg Plavix, your Haem should advise.
The idea of doing bloods once a year is concerning, and makes me wonder if you are getting optimum care.
If it was me and if it was possible, I would try to see a MPN expert once or twice or once a year or so to get a good plan, they can keep your local Haem in line.
Per MPN researcher & specialist Dr Spivak when I inquired if I should go on the meds at 600 platelets level- his response:
“What you need to know is your quantitative JAK2V6i7F allele burden. This can be obtained with a blood sample. If it is less than 50 %, you should do well. If it is > 50 %, you do not have ET. There is a new drug available for the MPN, which does not require the prior use of hydroxyurea, called Besremi. Your platelet count is not a threat to you and does not require reducing if you are asymptomatic. If you have an elevated hematocrit, that could be a threat by causing thrombosis and phlebotomy is the answer, not hydroxyurea. You don’t need to find a hematologist who doesn’t use hydroxyurea; you need to find a hematologist, who listens to his or her patients.”
As I understand it, the quantitative allele burden indicates disease progression. Mine was 19% when I was diagnosed with ET in Nov. 2019. In Nov. 2022, it was 22%. I do have other health issues: a nonspecific autoimmune disease (10 yrs) & AFIB (4 yrs) but no “lifestyle” diseases. I’m 62 yrs of age
I agree that each of our journey with this condition is individually unique in consideration of our overall health & lifestyle.
My two cents - look into alternative supplements - longterm use of Hawthorn reduces chances of blood clots and garlic thins the blood - both do so naturally and without side effects to my knowledge - in Germany Hawthorn extract is used as a first line defense for heart conditions. Look for "Over the counter Natural Cures by Shane Ellison" on Amazon - I checked it's available in the UK. And 12 months is waay too long an interval for blood tests - Mostew has a good point - listen to the experts but ultimately its your health and in reality nobody give a damn about your health except you!
For frame of reference: I am 55, ET Platelets 829 as of Jan 23' - I've been told to take aspirin but avoid it - no medication - exercise regularly and feel great. Oh and I've been taking Hawthorn and garlic for over 2 years - and my systolic blood pressure has reduced itself by some 18-20 points.
I am 68 & was told I needed to be on medication when they diagnosed ET Jak 2 last year. I was not keen as platelets only 570 at that point & no symptoms. I have gastric problems so having been prescribed Hydroxycarbamide it irritated my gastric tract I could not tolerate it. I have been 4 months off everything then started on the Peg Interferon injections. Currently reduced to monthly injection . As the weekly one gave me bad migraines . I took advice by speaking with MPN Dr knowledgeable on this disease . 👍
Given your history, direct consultation with a MPN Specialist would be very important. MPNs are rare disorders and most doctors do not have sufficient experience to manage them in an optimal fashion. In the context of a history of stanache cancer and UC, it is particularly important for you to consult with a MPN Specialist. As others have suggested, there may be treatment options that would be suitable for you. Best to get expert guidance yourself on this. Here is a list of MPN expert docs.
Plenty of good suggestions so far. I’m not an expert but, as some have said, it seems to me to be highly risky to get blood tests once a year. I’m only 55 but my consultant insists on tests every 3-4 months. MPNs are complex and with the increase risk of heart attack & stroke as we get older I’m not sure I’d be comfortable with an annual blood test as I go on. Also concerning that you can’t even take aspirin. Also my consultant likes my platelets to be below 500 to eliminate any risk of associated illness.
wow I do hope platelets continue to be that low. I understand you being weary about taking aspirin. What about aspirin every few days and take whilst or straight after a meal. You can take lanzoprozle to help with your stomach. Having had a stroke at the age of 50 it’s something I’m terrified of having again.
As for requesting a blood test once a year I think the GP’s way out of order! X
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