Turning 60

[jodary]

Has anyone out there decided against taking treatment? I know the advice is to take treatment usually , it seems to be HU. I was just wondering if anyone decided against it.I understand it is advisable to prevent any extra risks of clots but I am interested to know if everyone takes the advice.

[JediReject]

Hi jodary, , I'm sure there may be folk who have tried alternative or natural remedies rather than opt to take the HU , but I suppose for many of us we are shocked at diagnosis and readily go along with the treatment regime suggested to us. . And if it works it's a brave step to stop it and go against professional advice and take an alternative route.

It will be interesting to see if anybody that has bypassed the recommended drug treatment responds. . Are you thinking about it my friend ?????? Chris

[jodary in reply to JediReject]

Hi Chris, hope you are doing well. I am thinking of trying to hold off at least for a while longer although I am aware that at my next appt I will come under some pressure to start treatment. I have difficulty in accepting it, partly because I am sympton free and am concerned about side effects and long term usage, and partly because 5 years ago a consultant tried to pressure me. He moved me to another consultant I think because of that and she was of an entirely different opinion and saw no need for me to start treatment apart from aspirin. I understand the risk of clots and have no other risks apart from the count and now the age. I want to keep moving the goalposts, ie 61, 62, 63 ! I was therefore wondering if anyone had done this, and how they are getting on.

[JediReject in reply to jodary]

I've always been a great believer in choice in life. . My ex wife always got roped into organising things at work venue though she didn't want to. I advised her to exercise her choice and say no the next time the boss or other colleagues came knocking. She did and told me how liberating it was to be able to choose.

I realise the comparison between that and whether to take serious drugs are poles apart but the principle is the same. I would do what you feel comfortable with. If you're having regular blood checks you'll know soon enough if there's any serious downturn in your condition. . Good luck to you. Chris

[AndyT]

Have to say I followed the doctors' advice and started meds at 60. I don't like the idea of being on them long term but am relieved that my risk of thrombosis is now much lower, so think that makes the meds worth it - still probably more risk of being hit by a bus than either the ET or the interferon getting me first..! 😉

[jodary in reply to AndyT]

Thanks Andy, I am at clinic next week, will let you know how it goes.

[Hidden]

Hi Jodary, you have asked the same question I was thinking of asking?? To me, age is the only criteria I am going to be commenced on HU! This is when I reach 65!, I don't think this a good enough reason to be commenced on a chemo drug, without any other signs or symptoms. If my platelets were really elevated, yes I can understand that, but just been slightly elevated, 647, normal being 400. I am going to suggest to my haematoligist in November, when I see him, could I just keep monitoring them by having 6months blood tests? We will wait and see!!!

Lyn x

[jodary in reply to Hidden]

Hi Lyn, this is the first time i have heard 65 being mentioned instead of 60 ! The upper limit of platelet count used to be 1000, but seems to be 1500 now. I, like you, have been on 6 monthly visits to clinic and are able to put it out of my mind until they draw close again. My 60th is looming in November,and I think the pressure will be increasing for treatment. Like you I am well and very worried about feeling less well on starting treatment. My age is the only additional risk factor now apart from the ET which I have had for 10 years. I suppose I am thinking why not 61, or 62 or 63............... Ha !

[Hidden in reply to jodary]

Exactly!! My point as well. I have noted most peeps on this forum are prescribe HU or such at 60 or even younger. I am not sure if you know I live in NZ, maybe the protocol is different over here. I want to do a lot more research on these drugs!! Before I consent to taking them, might call me foolish, but time will tell. Lyn

[swess in reply to Hidden]

Hi Lyn

Absolutely agreed! Do research first before consent taking of drug. I had seen 2 haemo and one of them insisted I take aspirin to prevent blood clot but the other told me need not to take at all. My count currently stands at 587. it fluctuate, the most it hit up to 650 but been around this range so far. My next blood test will be in Sep. Btw, I live in Singapore.

[Hidden in reply to swess]

Hi Swess, I happy to take baby aspirin as peeps call it, no real side effects from it. It's the big chemo drugs that I am not happy about. I would rather have 6months blood tests and review the situation then. Your platelets are great. My are little higher. I read you come from Singapore. It is really interesting how different countries have different views on treatment. My next bloods are in November. Lyn

[swess in reply to Hidden]

Hi Lyn

My count range from 567-651 since it was picked up last year sep 2015.

Yes I am from Singapore. In fact my heamo in Singapore, one of the senior consultant/oncologist asked me not to read too much on the internet as some of the information may not be true. He told every body is different and may have different reaction.

Aspirin can hurt stomach to some peeps. As for myself I have sensitive stomach, so I worry it may hurt. If I remember correctly, one of the folk in Singapore also diagnosed calr mutation and platelets count was 1200, he was not even prescribed aspirin as his haemo did a blood clotting test for him called ris-cofactor to determine the level of clotting, and it was like 30%. So it is not necessary for him to even take aspirin even though his count was 1200. And recently he went for blood test and dropped too 900s..

Over here, not all doctors will insist you go on medication unless it is really mandatory. xx

[Stanley28]

I opted out of taking meds - but i am 48, ET CALR, fit and healthy with no other risk factor apart from high platelets which are 1200 - 1400. i was on HU for a year and on ruxolitinib for a year but neither of them worked for me. so i decided to stop taking meds. i feel very comfortable with the decision especially after reading the paper on CALR which was mentioned on here this week. But i don't know what i will decide when i am in my 60s. a tough decision with no right answer - just individual choice.

[jodary in reply to Stanley28]

Hi Stanley, thank you for taking time to reply. It is a tough decision, I don't know if I am being selfish , I know a lot of people are worse off than me and would love to just have a tablet to take to help their illness. Is your hemo on board with you ? I worry about how they would be if I said no to the treatment.

[Stanley28 in reply to jodary]

Hi Jodary - is my Hemo on board... hm. i think she respects my opinion. She wasn't on-board to begin with, but she is beginning to see things my way. But again - i dont' know how that will change as i enter my 60s. I think the trick is not to 'refuse' treatment but to suggest observation (sometimes called watchful waiting in the language of the NHS). It is a tough decision. wishing you well with it

[swess in reply to Stanley28]

Hi Stanley28

Are you taking aspirin at the moment? I am 46, ET Calr (but my haemo said I am a suspected ET patient. Went for BMB recently)

I do not have any symptoms at the moment. I eat well and have my regular exercise. Maybe it helps? And I drink plenty of water in a day.

[Stanley28 in reply to swess]

Hello swess - yes i take aspirin and like you, I exercise and keep active. i am waiting for a blood test result today - i am normally around 1400 but it seems stable so i am not worried. i was having tests every 3 months but have decided to go in every year now. less frequent visits help me to keep psychologically healthy!

[swess in reply to Stanley28]

Hello Stanley28

Thank you for your message. Yes it is good to stay healthy by exercise and eat well. We are all learning to stay positive as well, it does help I suppose.

Do update us here your blood test result. Best wishes to your result! I am same as you, blood test every 3 months to monitor. Haemo said once the range is stabilise, probably just blood test every 6 months once. I have not started the aspirin therapy yet. I just found out this on the website.

pure.qub.ac.uk/portal/en/pu...

[Stanley28 in reply to swess]

a really interesting abstract - thank you. i hadn't seen that before

[swess in reply to Stanley28]

Jak2 and calr genes are different but they tend to use the same therapy on calr positive patients. Calr mutation had just discovered recently, maybe in 2013, so may not have much info yet. Calr positive tend to have low risk thrombosis but high platelets count

[lizzziep]

My haematologist told me my platelet counts would jump when I got to 60. He was right, they went from around 850 to well over 1000. I was started on Hydroxycarbamide straight away and my counts dropped. I've been on it for over 3 years now and my counts are below 500, at times they have been inthe 300's. I would rather reduce my risk of stroke and put up with the side effects. But every individual must make their own decision.

Best wishes

Lizzie

[gillyflower1218]

I held out on the HU until I reached 66, last summer when my platelets went over 900. I really didn't want to take it as I was worried about the side effects and long term use of the drug. However, so far so good and no side effects and platelets down to under 400.

You have to do what feels right for you, and I got frightened by the worry of a clot, the pressure of the haematologist and the rise in platelet numbers. However as I didn't really have any symptoms from the ET, if the HU had made me feel I'll, I probably would have stopped it.

Good luck with your decision!

[jodary in reply to gillyflower1218]

Hi, thank you for taking time to reply. How did you manage to hold out that long, were you pressured at every clinic visit ? I am very interested to know. It is reassuring that you have no side effects as yet, were you offered any choice in treatments ?

[gillyflower1218 in reply to jodary]

Hi,

Yes I was put under a fair amount of pressure, but I couldn't see how turning 60 made any difference to the risk. How is it that at 59 it's OK to be on just aspirin (as long as platelets not too high) and then as soon as you hit the magic number it's no longer OK. I didn't appear to have any other health risks that might make me more susceptible to thrombosis - not overweight, don't smoke, cholesterol and blood sugars all normal, and I felt fine. Possibly if my platelet count hadn't gone up, I might have resisted even longer, but I don't know. The docs do make you a bit scared after an appointment! So cross fingers that I remain without side effects!

No, I wasn't offered any choice as to the drugs, although one did say I could have Anagrelide if I didn't want hyroxycarbamide, but that sounded worse to me!

Just hoping that I can live a long and healthy life and that taking the drug doesn't compromise that! My Mum will be 96 next week....will I be able to match her longevity!

All the best

Gill

[Loubprv Volunteer]

Golly gumdrops. There's a question!

I'm not a "comfortable" pill popper and avoid it when I can, but I would suggest this might be a question for your haematologist, and a second opinion from an expert in MPN's if your haemo isn't.

I've been on HU for 8 years, ( happily, touch wood big time )I take 1000mg 5 days a week, and 500mg 2 days a week, as well as 75mg aspiring and 75mg levothyroxine.

Without any of that I think I might be in a sorry state.

I always now opt for a venesection if my haematocrit goes up, which so far, touch wood again, has worked for me. I've been on the same dose for 4 years.

I 'm a big believer as many on this site are, that diet lifestyle hydration and exercise are big players in our condition. No alcohol and no smoking.

What can I say? Your choice, I'm 62, but giving up the meds wouldn't be mine.

Louise

x

[tessa46]

Hi Jodary, I absolutely understand how you feel. These are very difficult personal decisions, especially as hydroxycarbamide is no cure, just a symptom reducer which has a negative impact on the whole body's health. I had a slight stroke in October 2015 and finally got a diagnosis of ET JAK2+ in March this year. My platelets have varied, but on a range of 576-667. I am 68 and my haematologist is very keen to put me on hydroxycarbamide because I am 'high risk', but actually when I asked the questions, there is no data about stroke recurrance for those already on medication, such as asprin or clopidogrel (platelet aggregation inhibitor). So no research has been done as to the extent of the risk. I am taking clopidogrel, atorvastatin & ramipril, post stroke. I take plenty of exercise and eat a good diet and try to avoid taking any medication because of a history of side effects, so I have decided not to take hydroxy for the moment. My haematologist is against this but actually my GP supports my decision. I have a review in September and meanwhile I am working with a nutritional therapist to come up with a plan to improve my immune system. I will post on this forum if I find out anything that will be helpful to other people with ET. I wish you very good health, and I'm happy to discuss my decision further if it would be of any help.

[gillyflower1218 in reply to tessa46]

That's very interesting and I'll look forward to reading your future posts. I'm 67 and didn't start taking hydroxy until my platelet count went over 900 last year. Count now down below 400 and I take 1000mg Sat and Sun and 500mg a day the rest of the week.

[Kinsale]

Hi Jodary. I live in Australia and at 58 with a platelet count of 650 but otherwise very healthy I too have been advised by my specialist that she wants me to commence treatment at 60. We have had some very honest and direct conversations regarding this topic to no resolution at this point in time. My position is that I don't commence treatment just because I turn 60. If something happens such as a clotting event (this would be my first) or my count spiked into 4 figures then maybe I would reconsider my position. Hope it goes well Jodary