Turning 60

[jodary]

Hi All, I am turning 60 in a few months, I have ET and have only been on aspirin for the last 5 years. I am naturally concerned as to what is going to happen when I am 60. I have no symptons and am worried that if I start medication I am not going to feel as well as I do atm as I have a very busy life with a lot of committments. I am wondering if anyone else has decided against going on medication and if so what reaction the Drs have had. I understand that the risk of stroke increases after the age of 60, but I have no other risk factors. Any thoughts would be appreciated. Thank you .

[AndyT]

Hi Jodary - I understand your concerns as I turned 60 recently and had to start treatment with Pegasys after 13 years on aspirin only. Age is part of the equation but I guess it also depends on other risk factors - my counts had been rising with three consecutive ones over 1,000 so that plus reaching 60 led to the need for treatment. What is your most recent count?

On the plus side I've found Pegasys very effective and easy to use, with no significant side effects - I work full time and have a very busy life. It's reassuring to know my risk of a thrombosis is much lower with count now consistently down in the mid 300's and I just inject once every 4 weeks - so after the initial shock of needing to start treatment I've settled in to a new routine and life goes on as normal..!

Hope all works out well for you - Andy

[jodary in reply to AndyT]

Hi Andy thank you so much fir your reply. My last count was 895 but that was in January. I was interested to hear about your treatment. Were you given a choice of what to try as I thought HU was usually given .

[AndyT in reply to jodary]

I was given the choice of Peg or HU - I think a lot of doctors still try HU first (funding may be a consideration as HU is much cheaper than Peg) but my clinic favour Peg for (relatively..!) younger patients.

Are you in the UK..? I can send you a copy of my clinic's study on Peg if you PM me with your email.

I wasn't sure which to go with but am glad I tried Peg as it works very well for me so far - I've been on it just over 9 months now...

Regards

Andy

[Hidden]

Hi Jodary I am almost 65 and are only aspirin, I have ET too. My platelets are 647 at last test 4 weeks ago. I am also not keen to go on any other medications while I feel so well. I will be arguing the point when I see my haematoligist in November. I eat a good healthy diet walk 5ks every day. Blood pressure excellent. Work full time! So we will see what happens. Lyn

[Hidden in reply to Hidden]

I was also wondering if these chemo medications cost you?? And how much?

[lizzziep]

The haematologist told me my counts would jump up when I got to 60 - and they did! I've been on Hydroxycarbamide for over 3 years now, most of the side effects faded over a few weeks, however I do often feel tired, and my immune system is very low. I don't want to take the drug but it works keeping my platelet count down.

[jodary in reply to lizzziep]

Can I ask if they jumped a lot ? I know your stroke risk is supposed to increase after 60.

[jillydabrat]

Wow, I didn't realise 60 was such a big factor in the progression of the disease, now I will feel even more miserable when it rolls around in 5 years time. I wonder why it happens?

[jodary in reply to jillydabrat]

I like you am not relishing the idea of my 60th birthday but because for the last 5 years I have been told I will need treatment when I am 60 I have dreaded it more! I think if you are ill and they prescribe treatment you accept it but waiting for it for several years you build it up in your mind to something terrible . They say your stroke risk increases after 60 for all people but I have no other risk factors so as they say it is your choice in the end. I don't know of anyone who has declined any treatment, I would be interested if there is anyone out there.

[Hidden in reply to jillydabrat]

Hi Jilly!! Nothing! Haha I am almost 65! And feel great.. have ET. I only take aspirin daily. My platelets have gone down not up! Since diagnosis. Hang in there!! Lyn x

[Linda1950]

Hi there I'm 66 and was diagnosed with ET+ Jak 2 last Sept after several years of various health issues which I now know were / are related to my MPN. You were lucky that you were advised to take asprin as my consultant told me last year that I should have been around 5 years ago when a high platelet count was picked up. I was told by my Haemotologist that once I reached 60 the risks increased, I felt lucky to have reached 65 without having any major incidents, and that she would recommended my taking hydroxycarbomide which has been successful in bringing my counts. I was terribly worried about the possible side effects for weeks after starting the drug but I can truthfully say they are minimal and it's hard to say what to attribute to what anyway, the drug, the complaint or general ageing. The final decision is yours as whether you take the drug or not but I took the view that it was well informed professional advice. I don't like taking any drugs but once we get into our 60's the chances of that happening rise annually , they keep us going. I find as long as I keep hydrated, do moderate exercise and rest when I feel I need to I'm fine and lead a normal life. I hope this helps, ask lots of questions and talk to the MacMillian nurse whenever you need to they are great.

[jodary in reply to Linda1950]

Thank you for your reply. I have only been attending hospital every 6 months so in between I have managed to not think about it. As my appointment looms next week all my anxieties are coming to the surface .We will see what happens.

[jeanr]

Hi --- My counts were around 7-850, but they were climbing gradually and I was 70 when I was diagnosed. I asked to stick with aspirin only but the hematologist said why wait, you should take HU now, so I did. My counts are down around 400 and i am still having monthly blood checks because its hard to tell whether they have stabilised or still going down. I have been on it for over a year,

Last time I went to see my hematologist I asked about interferon as I had read that sometimes it puts the disorder into remission. (I am in Canada) Well he got very annoyed with me - said he understood it was prescribed in the UK, but why would I want to take it - because it will give you flu like symptoms. So I didn't say any more to him re interferon. I'm going back in August. So I'm still thinking about this, I know it does not always cause remission. I'd be interested in hearing any comments from people on interferon and remission. However, what I really disliked was the feeling I could not discuss this with him because he was so annoyed with me. Frankly I felt intimated by him.

[jodary in reply to jeanr]

It is very difficult when you feel intimidated by your hemotologist. When I was first diagnosed I saw a Hemo who was just like that and said I needed to go on HU immediately. I did some research and read that if you had no other stroke risks such as high cholesterol, high blood pressure etc you could just take aspirin. As my platelet count had been rising for 5 years already before my GP agreed to refer me, I challenged him and he actually agreed ! I was then changed to a new Dr who said there was no need for me to go on HU until I was 60. So if I hadn't challenged him I would have already been on it for 5 years . Trouble is I am now approaching 60 ! I have my 6 monthly appointment next week so we will see what happens.

[jeanr in reply to jodary]

Thank you for responding. I was interested to read your experience. I hope your appointment goes well. I had been without a Dr for about a year, and then it took a while to get into a hematologist so I think if I had had earlier appointments I would have got pressure to start on something sooner. HU works well for me. I did ask the hematologist about the risk of transitioning to leukemia on it and he said in forty years he had had only two people do that. However, I am still thinking about interferon and do try and read up on research on ET. I enjoyed your message-I think we need to be our own advocates. All good wishes. (I've been busy babysitting so hadn't noticed your message- I do apologize)

[jodary in reply to jeanr]

Thank you Jean, I too am a busy Grandma of 2 boys aged 4 and 18 months. They keep us going don't they !

[Stephen399b]

Hello, I am 65 and was diagnosed with ET (Jak2+) a few months ago. I was immediately prescribed asprin and HU (x3) per day. This has brought platelets (were 927) down to normal levels, but also whites and reds, so now down to HUx2 per day. The main side effect has been a growing tiredness, sometimes, but I still carry on with job and family and actually have benefited from losing some of the other symptoms that I didn't know were ET related. These included silent migraine-like visual disturbances, strange numbness in arms and tingling/heat in toes/fingers.

I certainly relate to the concerns over feeling intimidated by Haemo and feel I have had to fight to get informationand a discussion. I am now switching to another centre not too far away.

This site and the other main US one have been really helpful.

Good luck - 65 is the new 55 (and occassionally 100!)

[katiewalsh]

Hi. I was very afraid to go on HU but having multiple episodes of blood clots, including almost dying when both lungs were filled with PE's, I got on HU and a heavy duty blood thinner. I really don't think I've had much if any side effects. And my risk of clots is now drastically reduced. The doc I saw today said just having an MPN increases our risk of blood clots forming in our veins and arteries. So try not to panic, most people do fine on HU. Good Luck. Katie

[mhos61]

Hi Jodary,

I was diagnosed this year with ET (jak2) at the age of 60. I was put on aspirin and 500mg hydroxy, one a day. I felt truly reluctant to take the hydroxy. However, when the haematologist explained (in the way they do) the high risk of thrombotic events, she convinced me that this was really the sensible route to take. I have had no significant side effects to date ( five weeks) only the beginnings of mouth ulcers - which never come to much, also fatigue, which could be argued is attributed to the ET itself. At least you have had some preparation time to arm yourself with all of the facts. Good luck with your decision.

Mary

[katiewalsh in reply to mhos61]

Hi Mary. Do you rinse your mouth really well with water after taking your HU? If I remember to do that and drink lots of water I don't seem to get the mouth sores. If I forget I do get them. Just a thought.

[mhos61 in reply to katiewalsh]

Hi Katie,

I don't rinse my mouth as such- but I do take the hydroxy with a pint of water. I don't really get a full blown ulcer, more like the beginning of one that never comes to fruition....if you know what I mean? It makes me think though, if I had to increase the dose I may have a problem. Also, in the last week I'm beginning to get a particularly dry mouth. No, dry is an understatement, it's like the Sahara desert - and I'm drinking plenty of water? Thanks for the input and I will give that a try.

Mary

[katiewalsh]

PS. I should have said I drink a lot of water right away and throughout the day.