I think I am the worrying one, but my wife, a type 2 diabetic is 64 and has just been diagnosed with ES. Platelets about 750. they have come down with Hydro to about 600. but she has only been on it for a few weeks, so the haematologist is quite pleased. Still being monitored, but it's me that has problems with worry and thinking about clots etc. Don't know how best to be positive here. the Haemo says its quite manageable with effective monitoring, but I tend to be somewhat negative. Anyone here had it for years ?. By the way, we both do keep very fit and attend the gym 2-3 times per week, so we are very active and my wife has had no symptoms apart from feeling tired somewhat on the tablets
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wotan10
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Sorry to hear of your wife’s diagnosis. I can understand your worry, but she’s definitely on the right track regarding the hydroxy - and presumably aspirin.? A positive too that your wife keeps fit, this is greatly encouraged.
It will take a while for the platelets to come down to an acceptable level. As your haematologist has quite rightly said, with effective monitoring ET can be managed.
Yes, there are people who have had this condition for years. For example, a contributor on here called the ‘town crier’ has had it for over twenty years.
I too have ET, diagnosed May 2016. I am aged 62 and on hydroxy, which has effectively brought my platelets down to mid 300s. I remain active, still work part time and am positive about the future.
Easier said than done- but try not to worry. Too much negative energy.
forgive me, do you mean the remark ‘it will take a while for the platelets to come down?’
If so, yes everyone reacts differently to hydroxy. In my case, my platelets were only 500 to begin with. After three months of one 500mg hydroxy daily they were down to 288. At this point the haematologist reduced my dose - by allowing me to have Saturday and Sunday drug free.
My platelets are now stable at around 375, well below the 450 cut off mark.
Glad to know that you refuse to let this get you down!
I have had it for 8 years and myelofibrosis for 6 years. I am on Ruxolitinib and all is under control. Sure I get very tired at times and anaemia has been a problem. Believe it or not after being transfusion dependant for years it has now been only 1 transfusion this year and the doc only recommended it because I looked tired. I am
76. I put this remission down to Ruxo. I was one of the first to have it in Aus, 4+ years now. It has been slowly improving my health status. Never had hydroxy. Ask your Doc about Jakavi (zRuxolitinib) it sure seems to be improving my outcomes. Wish you and your wife all the best, try not to be a worry wart as it is a most infectious ailment in itself....Cheers Pete
Welcome, I have ET Jak 2+. (I’m assuming when you put ES you meant ET). I was diagnosed a few years ago (am now 68) and have very few problems. Yes, there are many here who have had ET for decades and are still doing well. I take Hydroxy as do lots of us. It seems to be the most effective for many of us and have the least side effects. If she keeps her platelets in check she shouldn’t have to worry about blood clots but she should be drinking 2-3 liters of fluids (not caffeinated) each day. It’ll take awhile for you to be more relaxed about this but the day will come when you’re no longer worrying. As most of us over 60 with ET are told, we’re more likely to die of something else related to getting old than we are from ET. Please be sure you and your wife ask any questions you have. Lots of good info available through members of the forum. Katie
Hello Woton, we can understand that you are worried, it is quite scary when you are first diagnosed, and it does have an impact on those supporting us. There are very many people around the world who have had ET for many many years and living a normal life, I myself was diagnosed in 2003 and have been on Hydroxycarbamide for nearly 7 years now and doing very well. Have a look at the information on our website mpnvoice.org.uk and also look at some of the videos on there, some are of patients talking about their MPNs. Best wishes, Maz
Thank you for your most positive responses, they help a great deal.( Yes, I did mean ET ! ) My concerns are that as ET is such a rare phenomena then we don't know a lot about it. it seems however on sites like this people with it will naturally congregate.
I am the worrier in our family, and my wife is much more philosophical ( she is also a trained nurse and midwife ). Clots are my biggest concern, but I am sure we are doing all we can to reduce this problem. We also travel a great deal and of course, now worry about this and travel insurance ( although I do not think this will be too much of a problem ).
I think we will be happier once the platelet count reduces as it seems to be doing. Don't know how long she will need to be on Hydroxy, but probably for the rest of her life, so we hope the occasional tiredness reduces a little once the dose is stabilised. Very good support form our hospital and consultant here in North West England so far.
Hi I am 62 and have ET and tested negative for all the gene tests. I have had anaemia several times. I am on aspirin and hydroxy that increases each appointment. I am around 600 but they want it below 400 to lessen clotting risk. I am not fit and have numerous other illnesses! After 3 bmb I am MF-1.
Water and more water is key. I can't have fizzy. My husband worries more than I do. I am calm, what will be will be! Having a MRI Sunday as they suspect brain bleeds. Relax and keep supporting her, this site is invaluable, the symptoms I have that a lot of people have on here, the haem doc says are not ET! I also know more than the g.p. Or practice nurse, scary!
Once again, thanks for the response, it has been a great help. Can anyone help with another concern ?. I know in regards to treatment it is left up to our Haematologist and his advice. We were due to fly to Eastern Europe before my wife started treatment and the Dr said this was not a problem, as my wife will hydrate well and use flight socks, but the flight was not too long. What about long-haul flights ( ie UK to Rio !! ) are you still allowed to fly with ET, or is this a no-no. I have not heard anything to the contrary, and I don't think the travel insurance will be such a big issue. Any advice appreciated.
I have ET Jak2 neg. You can fly long haul albeit you should get the go ahead from your Heamo first. I wanted to fly to NYC for my 50th last year but because my bloods were all over the place, I was told it was not adviseable (albeit he could not stop me) because of the risk of clotting. I was given the go ahead to fly later in the year both long haul and short haul. I was told to keep well hydrated walk around as much as possible. I took my travel insurance out with Staysure who cover ET under their policy.
I was diagnosed with ET 6 years ago. I take Hydroxy and have no side effects from it. 600 is a fine number for platelets. If my number hovers between 500-600 all is well. I'm quite active gardening, hiking and playing soccer, and have been told to keep active, it's great for blood circulation. Unlike others posting here, I can't take aspirin, due to having the diagnosis of ulcerative colitis. Keeping a positive attitude about the diagnosis is a real plus also.
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