Lived for 11 years with Essential thrombocythemia (ET) and JAK 2 positive just having blood tests every 3 months with platelets going up and down over the years in the 500 and 600. When I turned 60 last year the haematology nurses started to talk about it may be time to start chemo tablets just due to my risks go up with my age for blood clots. Now I have turned 61 they are really pushing and now requesting a face to face appointment.I am currently running a family business and caring for a family member and I cannot afford to feel unwell and the booklet they have posted out sounds horrific. I already have a sort of health anxiety not like being around people coughing etc so I feel being on the tablets will make me paranoid afraid of going out but I need to work. I feel healthy at the moment and wonder how many feel like myself. I don’t want to refuse to go on treatment if it is in my best interest but just because I’ve turned 60 is annoying me when my platelets have never got anywhere near the 1000 they have always said that that is when they would start treatment.
Any advice would be greatly be appreciated my platelets do seem to go to 600 when I am stressed and had a stressful year but usually stable at 550.
I also have severe allergic reactions to many things and carry EPI pens so chemo seems harsh. Please can anyone help have you been in my position and what did you do. Kind Regards Jan
Hi @Jan3 and a big welcome to the forum.
I completely understand your dilemma, especially if you are feeling well and are concerned about the side effects of the medication.
I am glad you have a face to face appointment as this will give you the opportunity to ask questions and to talk through your concerns and for your medical team to explain the possible treatment. Have you got a date for the face to face appointment?
I’m sure others will be able to share their experiences but I have also copied in the @BloodCancerUK_Nurses who will be able to respond with medical expertise. Remember the support line is there if you need to talk things through as well. I’ve included the contact info below in case you don’t have it.
It also sounds like you have a lot on at the moment and this is something else to add to that, so it’s only natural that it’s all going to feel a bit too much. Have you got people supporting you as well as you supporting others?
Please keep posting and let us know how you are doing.
Hi @Jan3 what a dilemma for you.
If you have a face to face appointment it is a time for both sides to say their feelings and why on the way forward.
Perhaps write down your fears, questions and practicalities to discuss at that appointment., just like you have here.
Perhaps don’t feel pressurised into making a decision there and then or until you feel it is right for you.
Please do let us know how you get on.
Be very kind to yourself
Hello Jan
I can only say what my consultant has said about the medication when you hit 60.
He said not to think of it as the chemo we all know about. He knows of children that have been on it years with no side effects at all. And it’s all dependent on what your levels are.
I hit 60 in 14 months and like you really don’t like the idea of having the chemo tablets.
Make a list of questions and put them to the consultant when you see him next.
What area are you in?
Hello, 60 is the magic number. When I had my Polycythaemia vera (PV) diagnosis I was 59 and the consultant talked about starting hydroxy when I turned 60. I was, and still am very resistant to taking medication and was able to present a good argument against it. I said that I walked a lot, generally ate well and felt well in myself and I was an individual and not all 60 year olds present in the same way. My blood levels are stable and I haven’t had a venesection in over 15 months. The consultant agreed that I was ok to carry on taking aspirin.
However, I have a face to face tomorrow with a different consultant, post bone marrow biopsy, so we’ll see. I’m still digging my heels in!
Good luck 
Hello @Jan3 - I am like you a fellow Essential thrombocythemia (ET) patient - diagnosed 18 years ago - I appreciate the thought of treatment can be a worry! And yes turning 60 for many health conditions tends to bring up a few more decisions - I guess as we age health needs change too, a bit like flu jabs for the older age group or breast and prostate scans for certain age groups - experience has taught the consultants how each decade can effect certain conditions - so that applies with MPNs and why going over 60 does tick more concern for your team, it’s there to look after you moving forward
As for treatment - my situation on diagnosis meant I did need treatment straight away so in my mid 40s I started Hydroxy did 13 years on that then 5 years with Pegasys interferon and recently back to Hydroxy - and am one of many patients that have used the treatments over many years and gained the protection of it - so hear all your team have to say get them to explain everything and make your decisions accordingly - and let us know how it goes
Hi Jilly20
Thank you for replying, can you live a normal life on the chemo drugs I feel so worried about being in contact with virus etc and having no immunity to fight them off.Feeling unwell when now I feel perfectly normal apart from an hectic life which I cannot afford to be slowed down from.
Kind Regards
Jan
Hi, I was diagnosed with Polycthemia Vera in 1998 and for most of the time was treated with Hydoxycarbamide and I was able to live a normal life and did not experience any side effects.
Hello there @Jan3, welcome to the forum! I see you’ve received some lovely welcomes already and great varied responses about why 60 seems to be a medically important age with treatments for Myeloproliferative neoplasms (MPN).
So you’ve lived well with Essential thrombocythemia (ET) for 11 years?! I find this so reassuring, thank you for joining the forum if only for my selfish relief at how well you’re doing a few years ahead of me! I was diagnosed last year with Polycythaemia vera (PV) which I’m sure you know with your lived experience is closely related to Essential thrombocythemia (ET). My haematologists have told me that I am considered a “young” survivor of Polycythaemia vera (PV), but because I had a heart attack in my 30s I am at high risk of further clotting events, and was prescribed daily hydroxyurea.
Not going to lie, the fatigue I developed from the hydroxyuea was pretty disabling at first and took a few months for me to feel my energy had returned. But that’s about it, I’m off out hiking and attending concerts and so on, with minimal adjustment.
I feel grateful there’s a medicine I can take that has so much research behind it. My haematologist told me something very reassuring about hydroxyurea, in that kids with sickle cell disease have taken it for decades and research shows they don’t have a greater incidence of other cancers. Good enough for me!
It can make our skin photosensitive though, and in my case I noticed it would make my skin feel sort of fizzy in the sun before I figured out my suncare better and wear UPF clothing and high SPF sun lotion and so on. Haven’t experienced any fizzing this year but have been out and about as before diagnosis, all thanks to better sun protection.
My haematologist also told me that as we age we just accumulate more wear and tear in our bodies and that fighting off infections and illnesses is harder, so age 60 is just a point in our lives when we’re more likely to find it harder to recover from ailments and doctors use it as a sort of generalised yardstick for some treatments. Kind of like how those at-home colon cancer tests start being recommended at age 45 these days, related to the age when diagnoses become more frequent.
So I’d say from my non-medical point of view, as you’re so healthy and active and haven’t needed any treatments beyond the aspirin, maybe just approach your specialists and ask about whether you really need to take hydroxyurea now. Like you say, your platelets have stayed nice and lowish and not far beyond the normal ranges. If it’s any comfort, since taking hydroxyurea my platelets have always been in the normal range too and my blood is therefore thinner and less at risk of clotting, which I’m sure you know is our main risk.
Hope this helps! I know hydroxyurea has all those horrific potential side effects listed but legally these pharmaceutical companies need to be transparent about any potential side effects, even the super rare ones.
Do please keep us posted about how you get on and what you decide @Jan3, really glad you joined the forum fellow Myeloproliferative neoplasms (MPN) survivor!