well i really was not expecting to hear what i did today, that my high platelet count is due to a JAK2 mutation, and is definitively what theyāre saying caused the clot in my brain. So now iāve had the clot they want me consenting to Chemo drugs to reduce the platelet count. And this is where Iām all against the treatment and hoping at least someone is defying the 1939 Cancer ACT, which only encourages the mantra of Big Pharma, a customer cured is a customer lost. So yeah iām just looking really to see if anyone here is managing platelet count without Chemo or knows of someone not here that is? As myself would rather look a blood health supplements to reduce rather than just putting some toxic stuff into my body that is already having problems just to confound it
Hello there @Explosivo55, welcome to the forum, although Iām sorry to read of your JAK2 gene mutation diagnosis and especially experiencing that clotting.
We forum members canāt really offer medical advice, but you will find many others here who have a JAK2 or other gene mutation and take medicines such as hydroxyurea or interferon for many years without toxicity issues that you mention.
Speaking personally, I was also diagnosed with a JAK2 gene mutation and previously survived a severe heart attack caused by a blood clot. Getting the test results back about JAK2 was terrifying as I understood what it likely meant, and indeed I went on to be diagnosed with Polycythaemia vera ('PV'). May I ask whether youāve been given an overall diagnosis as we can direct you to relevant research if you know. Please donāt feel obliged to share.
Iād say, as someone who has taken hydroxyurea daily since diagnosis, itās great to question our treatments, but as I am not a specialist in blood cancer I defer to my experts. My recently trained haematologist reminds me that hydroxyurea, a mild form of chemotherapy, has been used for decades by folks living with sickle cell disease and statistics show that they donāt have a higher rate of developing other cancers.
I certainly did not want to take chemotherapy but now I understand it better I feel safer minimising my risks of further clotting incidents with a proven medicine than trying to manage my bodyās overproduction of blood cells without it. It also means I can expect to live into normal old age with less risk of clotting.
If youād like to talk through your concerns with the lovely specialist nurses at BCUK they can be called at 0808 2080 888 and emailed at support@bloodcancer.org.uk.
Hope that helps a little @Explosivo55, do have a look around the forum to see how others get on with their treatments.
Hi Duncan thanks for getting back to me with all this. On Monday they want me consenting too Peginterferon alfa 2a, 45mg weekly for 8weeks in which he says that by this time things should level out and i should cope fine but all this just to reduce my platelets and if not we need make changes in medication, but you saying Hydroxyurea has me come up with Resveratrol in its place, which isnāt exactly in BigPharmaās goto book, last thing i read on it is that it merits more studying, but yeah the āexpertsā in this field are most compartmentalised by the 1939 Cancer ACT and to me that doesnāt make them experts that makeās the masters of only what they have been allowed to see.. But atm this all day 1 for me and my going to hospital was to get answers for what was causing me trouble and now i have that answer, the treatment wasnāt never particularly what i was going to be accepting of, so yeah its not medical advice am looking for as Iām going to try supplements myself anyways, but just wanted too see if someone else here has and can cut me the chase that it failed or worked for them
Itās a lot to take in all at once isnāt it? Iām sorry youāre going through this @Explosivo55, but youāre not alone as this forum will show you.
When I was diagnosed in 2023 I remember feeling rather bombarded by a lot of new terminology and language that took time to sink in and make sense. I can say a couple of years on that itās less black or white than treatment failing or succeeding and more about learning to live with the random grey areas of an incurable type of blood cancer.
I am certainly no medical expert and would not want to comment on whether resveratrol can reduce platelets or other blood cell numbers comparably to medicines designed to do that. I wonder why taking unproven supplements versus a tried and tested medicine is preferable? I chose to trust decades of medical research to help keep me alive.
I hadnāt heard of the Cancer Act 1939 but donāt think Iād be concerned about itāour specialists should base their suggested treatments on decades of research and our individual needs at time of diagnosis.
Iām glad youāve got answers now to what was causing trouble. For what itās worth, the daily aspirin and hydroxyurea treatment Iāve had has brought all my blood cells into their normal ranges and I no longer need monthly blood tests or fortnightly phlebotomy as I did to begin with. I am functionally well thanks to my treatments.
Do look further around the forum, perhaps you can find others who use supplements in addition to their treatments. You can use the search box at the top or Related Topics below to look for specific subjects. Hope that helps a little @Explosivo55!
Iām so sorry to learn of your circumstance, my heart goes out to you
Please be assured you are not alone, everyone here is supportive and we are all here for each other. Whilst my situation is very different to yours, I understand the emotional roller coaster we all experience and I encourage you to let us know how you get on
Morning @Explosivo55
I wanted to start by welcoming you to the forum. It sounds like youāve been through an incredibly frightening time, and hearing about a JAK2 mutation on top of recovering from a brain clot is a lot for anyone to take in. Itās completely natural to want to question everything when treatments are mentioned.
Iām a forum volunteer here in the UK, and while I canāt offer medical advice or comment on specifics, I can share some perspective on how things often work for those of us navigating these conditions through the NHS.
Itās worth noting that here in the UK, the terminology can sometimes be a bit different than the US.
Remember though wherever we are:
Treatment is always our choice
Itās your body, and you have every right to ask questions about the āwhyā behind a treatment.
Many people here find it helpful to:
ā¢ Write down a list of questions, concerns.
ā¢ Ask for a second opinion: You can always ask to speak to another specialist to see if they agree with the approach.
ā¢ Discuss āWatch and Waitā: Some people do manage for a time without medication, though this is usually based on a very specific risk assessment by a haematologist.
ā¢ Talk to a specialist nurse: as mentioned the Blood Cancer UK Support Line (0808 2080 888) is brilliant. You can talk to them about your fears regarding treatments without any judgment.
Itās a very personal decision, and there is no harm in taking a breath to gather more information.
I may be worrying unnecessarily but since my diagnose of Polycythaemia vera ('PV') in Dec 24 (a big shock at age 61) my platelets have been rising steadily with my latest reading of 499 (theyāve been above 450 for 4months now). I have had the Jak2 confirmed as positive and my only treatment this far has been multiple phlebotomies with 75mg aspirin daily and low iron levels (currently 13). So with regards to the platelets will I have to go onto hydroxyurea to bring my levels down could someone please tell me? I know my haematologist will tell me when the time comes but would be interested to hear other peoples experiences.
I struggle with work as I am a self-employed electrician and the work is quite physical and at present I have reduced myself to 4 day weeks but because of the fatigue I feel this will have to be reduced further. This in itself is another worry as I do need to work and as I am the main income for the household and my thoughts are with a mild form of chemotherapy I may find things even harder. Prior to diagnose I was fit and well but this Polycythaemia vera ('PV') has certainly slowed me down and I know how you all feel and I send my best wishes to you all.
Hello there @ChristopherP, welcome to the forum fellow Polycythaemia vera ('PV') survivor. I see dear @DuncanB has greeted you and shared great practical information as ever, which I canāt add to, but perhaps my experiences with hydroxyurea might be of interest.
Iāll just add the Blood Cancer UK information about Polycythaemia vera ('PV') here in case you havenāt read it, itās been really helpful to me since diagnosis: Polycythaemia vera (PV) | Blood Cancer UK
Although Iām not a doctor, I have followed my test results to understand whatās happening in my body and it sounds like your platelets have risen a little but are thankfully still not too high. I note that my blood cells are never the same amounts between tests, and will vary month to month due to treatments affecting their numbers, so have stopped thinking too much about that.
What Iāve found with my own blood cell numbers is that they stabilised into their normal ranges once my hydroxyurea dose was right for me. I took one capsule daily and my newer haematologist and I changed the dosage until I no longer needed monthly phlebotomies. He wanted to free me from them, and has!
Not going to lie though, I had pretty strong reaction to the hydroxyurea, causing me extreme, disabling fatigue. Iād say it took about 3 months to dip straight into that vile fatigue and then back to a state of energy where I could manage day to day stuff again. As my treatment stabilised blood cell overproduction my energy levels returned to pre-diagnosis levels, maybe a bit more now as Iāve kept active throughout.
There are other treatments for Polycythaemia vera ('PV') like interferon and ruxolitinib, but hydroxyurea tends to be the first offered to us as it has decades of proven efficacy for helping those living with sickle cell disease. There are risks and benefits to each and it should be your choice. We can also change medicine should ours not agree with us. Hereās some further information about Polycythaemia vera ('PV') treatments: Polycythaemia vera (PV) treatment | Blood Cancer UK
Hope that helps a little @ChristopherP. Do have a further look around the forum as thereās a lovely bunch of folks here who live with Myeloproliferative neoplasms ('MPN') like Polycythaemia vera ('PV') and share how we get on. If you use the search box at the top or Related Topics below youāll find us.
Thank you for your helpful information and Iāll try my best not to worry and carry on with life as best bas I can with this Polycythaemia vera ('PV') in the background.
I will update you after my next blood test and probable venesection which is in 2 weeks. One thing I didnāt mention in my previous ramblings is the great care I have received from my local NHS Trust in Exeter and the nurses who carry out my venesections, although I still wince at the size of the needle!
Aw I love this @ChristopherP, arenāt our nurses amazing?! I learn so much when I go in to have blood removed, and early on my phlebotomists were an incredible source of information when my first haematologist was quite out of date (or wrong) with his.
You may be pleased to know that Blood Cancer UK has incredible specialist nurses too who we can call for free on 0808 2080 888 with our medical and support related queries. Youāll see them around the forum too.
Glad to hear @DuncanB and I have heard the same tip about hydrating really well before phlebotomy, it really works for me. I call it my pre-phlebotomy hydration quest and like to compete with myself for how quickly my blood drains.
Know what you mean about the larger needles, but perhaps you wonāt need those once your blood is thinner. You may find as your blood thins over time that it flows more easily during venesections anyway, but itās good to get in and out of hospital faster! 15 minutes is my fastest in and out of the treatment chairā¦ so far!
Duncan I do wonder if that thinner blood will arrive at some point. Am I right to think itās the amount of RBCās that thicken it but as mentioned by DuncanB plenty of water is essential.
It is interesting to note that some 8 months before diagnosis along with my wife we took part in a health check - blood pressure/heart rate etc and part of the test was a finger prick for bloods for cholesterol testing - no matter how hard they tried they could not get me to bleed. For sure this was the Polycythaemia vera ('PV') already affecting my blood make up without me knowing. It was also noted I did have high blood pressure which since diagnosis and treatment has come down to normal levels - another indicator.
From my understanding @ChristopherP itās elevated red blood cells that are typical with Polycythaemia vera ('PV'), so yep a corresponding higher haemoglobin level. Do check this with your specialists. I had elevated platelets at diagnosis too, it varies between diagnosees. My specialists check that my haematocrit is less than 45 % at my blood tests or Iāll need phlebotomy to reduce it manually.
Interesting about that thicker blood, you know, many people with Myeloproliferative neoplasms ('MPN') around the forum have mentioned similar pre-diagnosis issues with their blood. A couple of folks have said they donated blood and perhaps that hid their presumed blood cell overproduction.
Personally, I had a heart attack caused by a blood clot and had other odd blood issues over the years, but it was getting tested for a JAK2 gene mutation that caught the Polycythaemia vera ('PV') that I assume was behind it all. Iām glad weāre here now to tell these tales!