ET, and prognosis

[jeanr]

I saw my hematologist in September and asked him what my prognosis was (I'm taking hydroxy one a day and this keeps my platelets at a good level). He said that he believed that in 5 or 10 years I would probably be able to stop hydroxy and at that point I might, or might not, need some red cell transfusions. I've been on hydroxy for about 2 years now and I am 73. Is anyone else on that path? ... Coming off hydroxy and perhaps needing a transfusion? I have to ask him to clarify why this would be at my next meeting. I find I need time to process what the specialist says and then invariably have questions later. I also wasn't too clear whether he meant if I started needing a transfusion I would be heading towards the end of my life.

[zvinkovic]

Hi,

It looks to me like he is expecting you to start developing marrow fibrosis. But, I don't think there is some hard evidence that every, or even most, ET patients will develop fibrosis. I think that there are more people who have had ET for years and it never progressed to one of the other forms of MPNs or to Leukemia.

Best wishes

[Hidden]

I have been on Hydroxycarbamide for nearly 7 years and have never been told that and my tablets have only ever increased to get the platelets to stay at a steady level.

Likewise a transfusion has never been mentioned, it would be good to hear what they have to say next.

[jeanr in reply to Hidden]

Thank you for your reply. I should have asked more questions. I will do so at the next meeting. I think he was speculating that I might become fibrotic perhaps due to my age -- I need to do some more reading. I know that all it did was worry me when I thought over his words. I do appreciate your reply.

[catkinspolymer]

Hi Jean , I am now 73hope this helps ,

I have searched through my old notes on my case which may be of interest.I am now nearly a 73 year old man living in the wilds of Wiltshire and still going strong whilst living with ET.

I started in the rubber industry in 1963 on leaving school and worked for a tyre company in the west of England called Avon, now owned by Cooper tyres of the US. Stayed in the rubber industry another 15 years and then went onto a similar occupation mixing specialist plastics fo another 22 years.

Had some visual disturbance and dizzy spells in late 1985 and had a privately funded medical check including a blood test, which possibly showed some evidence of myloproliferative disease.There was some notes on my blood tests where the technician had written presence of " basofils, myloproliferativre desease ?" On recently checking also spotted PCV was 49 at that time. my GP ay the time did no understand the significance.

It all seemed to get better and was all forgotten about by me and my GP until 1996 (with a new GP) when I was in serious trouble with high blood pressure chest pain and lethargy. Blood test showed a platelet count just over 2 million and a BMB revealed ET. This was controlled with 18 time 500 mg tablets of HU per week and fell to about 330, 000 where it has been for the last 12 years. Recently however it has fallen to 270,000 and hem has reduced HU to 13 per week. PCV has risen to 47 and I am now having a phlebotomy every 6 weeks or so to keep it below 45. Back in 1985 I had two small children and I just got lucky that I did not have any kind of thrombosis. My girls would have suffered without their Dad.?

Generally today I keep well but cannot do an 8-hour workday. Managed to semi retire in 2000 and now fully retired but doing lots of charity work with our entry to Britain in Bloom.I am also now the town crier. However one shock was that when I retired I rang a Swedish friend who i had gone to college who also worked in the the rubber industry and found he had PV. We searched hard but did not find any significant increase incidence of myloprofilerative disease in the Rubber industry. Perhaps most ironic of all two other close college friends have now died of heart failure whilst me and my Swedish colleague keep soldering on. I also enjoy long (8 week trips) to the Continent with my caravan but have to have a phlebotomy as soon as I get back. To be absolutely honest the ET interfers very little in my life , but it does make you get on with things you want do.

all the best hope the spelling is up to the mark.

all the best

Chris Atkins

[jeanr in reply to catkinspolymer]

Hi Chris - Thank you for your cheerful message, and for replying. I really appreciate you taking the time. I was very interested to read of your life and of your medical history, especially hearing of the technician's notes suggesting myleoprl.disease way back -really amazing. . (I have a cousin who lived at Marlborough in Wilts by the way-I was born in the Uk and emigrated in 67.) I was pleased to read how ET interferes very little with your life. Regarding the industry that you worked in and risk factors - I spent a lot of years in an office with a lot of electrical systems and a computer server near my desk which I understand now is a possible risk factor. Your life is very inspiring, and I agree with you totally having something like ET does make you get on with the things you want to do. The caravaning 8 week holiday sounds great ---along with being a Town Crier and Britain in Bloom. I really enjoyed hearing from you, it was a very inspiring letter. I do get out and exercise, and I go across each day and make my young grandchilldren lunch on school days and have the youngest for the afternoon. I think my last visit the hematologists response to my question about prognosis just got me in a bit of a worry mode. So thank you for all your words Chris. All the best Jean

[catkinspolymer in reply to jeanr]

Hi Jean We have had the pleasure of our first grandchild now a year old , aboy who looks just like me at the same age poor chap. He was also quite gift as my eldest daughter had a non malignant spinal tumour which went undiagnosed fro 3 years but now she is fine but finding the baby hard work and going back to work , We get roped in a fair bit.

[Coradelphine]

I have had et for14 yrs and it never affected my life at all. I was on hydroxy then a combination of hydrox and anagralide and finally just anagralide which keeps my platelets ok.

I have also now got myelofibrosis as well. It's rare to get people with et and mf

, I've only come across one other person with both. The incident rate is approx two and a half people in 200000

I get very tired as I am anaemic and have to have blood tests every six weeks, but apart from that I'm good.

There isn't a prognosis for et your life may be slightly shorter than the man in the street, so don't worry about that.

there isn't a prognosis for myelofibrosis as there isn't enough know about, and the research does not qualify for government funds

I hope you find this helpful

[jeanr in reply to Coradelphine]

Thank you for your reply, and for telling me about your situation, I did find your reply helpful. Its good to hear that you have been doing well apart from the anaemia. Also, I enjoyed reading about the statistics and how few people get et and mf. There seem to be very few people with et in the province where I live (Manitoba in Canada) so my source of information is reading on line or my doctor. Thank you also for your kind words not to worry. Most days I don't I just get up and get on with life, I think I just got thrown a bit by my hematologists words when I asked him what might lie ahead. A very,very sincere thank you for replying. All the best to you. Jean