My husband is 45 and got diagnosed with ET Jak2 Positive 2 years ago. He's generally feeling fine. With occasional headache and tiredness, but we eat healthy and he excersises a lot. He's on low dose aspirine. It took us some time to get into terms with this, but we dealt with it through therapy and live our life as normal.
Lately I keep having really worrying thoughts about it and worry about the future etc.. I was fine for a while, but sometimes I just fall into this dark places. We have small son and want to have another baby. I try to stop googling but sometimes I just hope to find someething saying it will all be OK and they found a cure...
How long some of you have lived with ET?? I constantly think about life expectancy!! Do simptoms get worse with the time!? If he eats well, keeps excersining a lot would that help!? Is there anything else we can do to make things better!?
Thank you,
Written by
carlagb
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Hi, I was diagnosed with ET Jak2+ at the end of 2012 when I was 57, though my platelets had been high for several years before. I take aspirin and hydroxycarbamide and my platelets are around 400 now. Please try not to worry about your husbands life expectancy. As long as he is monitored regularly by a haematologist, preferably a MPN specialist there is no reason why he shouldn’t have a normal life expectancy. There are people on this site who have had this for 20 years plus and are still going strong. For reliable information have a look at the MPN Voice website.
hi carlagb I posted this several years ago now 76 and still going stongish. hope this reassures
To: MPD-SUPPORT-L@SERV.AOL.COM
Subject: Essential Thrombocythemia and the RUBBER INDUSTRY
Sent: Tuesday, 19 August 2008
Hi Allissia
I have searched through my old notes on my case which may be of interest.I am now nearly a 70 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
Brit 69 years old ET diagnosed in 1996 but some evidence of MPD in 1985 12 times 500mg HU per week baby aspirin every day and amlodopine to control the blood pressure.
Hi, I was diagnosed with et Jak 2 in 2008, at age 52, with platelets around 600. I was told it was a blood disorder and my hematologist told me not to google it because he said I’d find a lot of misinformation. I continued to live my life as normally as possible but switched to a career that I could work from home, mostly, and make my own hours. I still led an active social life. Unfortunately, my illness progressed to MF a couple of years ago. I’m still very optimistic because over the years, there’s been so much research into mpns, and new treatments are being tested and approved all the time, which your husband will benefit from.
It sounds like you are already doing the things you need to do to deal with the ET. Bear in mind that most people with ET will live a fairly normal lifespan. It is more about quality of life/managing symptoms than end of life issues. There is a bit of a truism that you are more likely to die with ET than from it.
I was diagnosed with ET about 30 years ago. It progressed to PV about 7 years ago. I have lived a rich life and at age 65 continue to do so. I plan to keep living a good life despite the challenges of aging and managing the MPN and other medical issues.
There are some things your husband can do to make things better. Paying attention to overall health is a key issue. Making good lifestyle choices is very important when managing a MPN. Good cardiovascular health is particularly important in reducing with with a MPN. Exercise is certainly part of this. A healthy diet is also very important. There is good support for a Mediterranean/anti-inflammatory type diet as one element of MPN management. MPNs are at the core inflammatory disorders. Controlling for inflammation is a key element in improving quality of life and decreasing symptoms. There is emerging thinking that reducing inflammation can also slow potential progression of the disease. I have had success in reducing inflammation with anti-inflammatory agents (e.g. Curcumin, L-Glutathione).
It is most accurate to think of ET as a chromic condition that needs to be managed rather than a life-ending condition. Treatment options are improving and there are some very promising options in development. While it is normal to worry, expect your husband to be around for a long time to come.
Thank you for your kind words. We moved to the countryside for quiet life and I cook loads of healthy meals, plus he's taking vitamins to reduce inflammation. I'm doing everything I can. Just sometimes I have bad days, and I'm really glad this forum exists. ❤️
hello Carlagb, I am sorry that you are worrying about your husband's ET and the future, we all understand, I can see that you have had a few replies from the lovely people on this forum, and hopefully they will help. I was 44 when I was diagnosed with ET, and now I am 61, my platelets are well controlled by Hydroxycarbamide, which I've been taking for 14 years, and I take aspirin.
Do you go with your husband to his appointments with his haematologist? It might help you to go with him so that you can ask the haematologist questions. Symptoms can be controlled by medication, so if his symptoms do get worse he can discuss this with his haematology team. Eating a healthy diet and stay fit and active is recommended, we have advice on our website about this under our ways to feel better section
Thank you. I no longer go with him, as I just burst out crying as soon as we get to see his consultant... I think it's less stressful for my husband to go on his own, as he is quite positive person. I give him lots of support and lovee at home, I don't want to show him it's bothering me. I really want to be strong for him. But I just break down when it comes to talking about this with specialist. I'm still in shock this has happened I think. I tell him all the questions he needs to ask for me and he does. I just have bad days. But we will manage. I keep an eye always on this forum which helps me so thank you very much. ❤️
I was 60 at time of diagnosis so that is a huge difference. It’s still early days it took me over 4 years to come to terms. I was so anxious as I was very active and it’s been taken away from me. All I can say is that your husband might have awful bouts of fatigue. What you do in life must evolve around him. If he’s feeling good then use it and go to the park or fun things. He, I’m afraid needs to dictate. Don’t stretch yourself financially. Use your cash to buy in help ie gardener/ decorator so that he has the energy to spend on fun things. Go on for that second child but consult your heam first.Live life to the fullest.
So sorry to hear about your husband.I can honestly say I know exactly how you must be feeling .
My husband was diagnosed at 41 with PV it progressed to MF after about 5 years.
I was constantly searching and looking for answers in Google it absolutely made me ill at the thought of life expectancy.
My honest opinion is that you can live a normal healthy life as long as it's all managed by your hematologist.
I found so much relief and comfort joining this forum as these people on here are the ones who live with an Mon and can give you support and answers.
My husband is 49 this year we literally live life normal .
He gets blood tests every 3 MTHS and a telephone appointment with his consultant.
His bloods are all in normal range now he's on ruxolitanib and a baby aspirin along with a lansoperzole for stomach protection.
My husband works full time in the oil and gas industry he's got a very demanding job . He always worried incase he could no longer work , but in all honesty he's been absolutely fine.
He's had times of exhaustion but since starting ruxolitanib he's been brilliant.
Stay strong try not to Google. Turn to the people on here as you will always get support and hopefully settle your mind.
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