Hi. Firstly I must mention how grateful I am to have found this group. I’ve been feeling very isolated, frightened and alone.
I am 62, I was diagnosed with ET 16 years ago. I’ve been managed on daily aspirin all this time. Honestly, I’ve hardly thought about my condition all these years. I’ve been monitored every 3 or 4 months, and sent on my way. I’ve been generally very healthy (no other medications) and fit (sports and gym). I have had 3 major hip surgeries due to being born with hip dysplasia, and have fully rehabilitated and continue with sport.
Recently I was suddenly told, that because of my grand age, 62 I should now be treated with Hydroxycarbamide…simply because I am over 60.
This has left me reeling. Anxiety through the roof. Weepy.
Has anybody any advice, experience of this situation? Or suggestions on how I can approach this?
2 haematologists have told me this a world wide protocol…but neither tell me I absolutely must start this immediately.
I’m terrified if I do, and also if I don’t, am I foolish?
Thank you for any thoughts.
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Peachjoy
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Hi Peachjoy, I was diagnosed with PV ( and ET) 5 years ago when I was 64. No other medical problems but I was immediately prescribed hydroxycarbamide and aspirin. Apparently the clinicians consider the increased risk of strokes in the over 6os high enough to advise taking more medication rather than just aspirin. Hydroxycarbamide seems to be the medication usually given. So far I have been fine except for occasional mouth ulcers which are a common side affect. I do often feel tired but whether that's age, PV or hydroxycarbamide is a bit of a quandary!There are members on this forum who have been taking hydroxycarbamide for many years with few side affects although the are some who couldn't tolerate it and changed to other medication. Needless, to say the other medications also have side effects. Have a read of other posts about hydroxycarbamide. Turfbeg
Thank you Turfbeg, I’ve just seen that I’ve a few replies including yours (the first). It already feels a little better just knowing you are all out there and understand.
Your comments on side effects help, you put perspective, because at the moment I’m in that headspace that says I’m going to get every side effect, in the worst possible way! Hmm
I was in my early 60s at diagnosis (ET) with platelets around 650. I was completely blindsided when told I was in high risk category for stroke and thrombosis and HU and aspirin was going to be the treatment. I’d had a DVT in my early 40s which wasn’t a good experience so as much as I didn’t want to start taking anything other than aspirin I felt it best to follow the advice.
That was then but, if now, I’d be asking for a discussion about all available treatments and expect to have some say around it.
I remember the huge effort to put that first capsule in my mouth let alone touch it, a non event on the end! The dose has since been increased a little due to rising platelet levels but HU works for me and I’m still on a relatively small dose. My platelets do jump around (higher with spring hay fever) but average in the mid 400s.
In more recent years I’ve seen the awful effects TIAs and strokes can have and so I’ll keep swallowing those capsules as long as they keep working.
It’s a shock when something about our condition shifts and I’ve come to recognise the importance of being able to trust the advice and expertise those treating us so 5 yrs after diagnosis I moved from a general haematology department at a local hospital to a specialist MPN team elsewhere. Now I’m an individual patient and not just a condition to be treated.
I hope your worry will settle soon. I think many of us will recognise something about your experience.
That is such a good response. I agree with everything you say.
At my request, I have had a consultation with an MPN expert recently. I am delighted with the outcome of that. Due to Logistics/Covid I have opted to have ‘shared care’ for now with the MPN team and my local haematologist. It’s the best decision I’ve made in a long time.
Ps . Hav e you any symptoms or feel much the same as over the years.
Please try not to let fear become dominant. It can effect our health in a negative way. .
Are you Having a mainly anti inflammatory diet ?
I do know how you feel . I’m 65 and diagnosed with JAK2 pos 2 years ago. And still resisting Meds apart from aspirin. I’m taking several supplements under profffesional advice ( not the hospital)
Every month I or 2 I have blood tests and am waiting till platelets over1000.
I don’t have any symptoms (that I’m aware of)…this is my problem, accepting that I need to take a serious drug when I don’t have symptoms and my platelets are comfortably under 1000
The protocols for treating ET are changing. Some now use age 65 rather than age 60 as the time to initiate cytoreduction. Some MPN Specialists do not use an age protocol, focusing instead on an individualized risk assessment based on how the individual has aged and their co-occurring conditions. The age 60 protocol is based on the increased risks associated with MPNs and aging and does apply to large numbers of people. It may or may not apply to any one person individually.
Bear in mind that the issue is not about the number of platelets, particularly at the levels you cite. The issue is about how the blood cells behave and your individual risk of thrombosis, hemorrhage, and microvascular symptoms. Age does play a role, but so does your genetic profile, general health and cooccurring conditions.
If you decide that it is in your best interests to pursue cytoreduction there are two first-line treatment options - hydroxycarbamide (HU) and PEGylated Interferon (PEG). There are also second-line options like anagrelide and Jakavi. The first step in making this decision is to decide whether based on your treatment goals and risk tolerance cytoreduction is the correct option for you. Evaluating this you need to compare the risk/benefit profile of each of your primary choices - aspirin-only, HU, PEG.
You are not being at all foolish in having concerns about starting treatment with HU or any other drug. Each of our treatment options can have significant risks. That is the nature of dealing with a MPN. It is best to base decisions on facts rather than fear. Some people are able to use HU and benefit from it. Others, myself included, cannot tolerate HU. I have found PEG to be more effective and much easier to tolerate. Not everyone responds to PEG as well as I have. We are all different in how our MPN presents and in how we respond to treatment.
It is important to consult with a MPN Specialist rather than a regular hematologist in making decisions about your MPN care plan. Many hematologists lack the KSAs to provide optimal MPN care. Here is a list you can consult for an expert opinion.
Suggest doing a bit of basic research on your options to prepare to consult with a MPN Specialist and make a decision about what you want to do. Here are a few resources to get you started.
Please know that you have this. You can make a good decision for yourself and move forward with confidence you have made the right decision for yourself.
I had a portal vein thrombosis when I was c 43 and eventually diagnosed ET and all I've taken is aspirin until 68 but my platelets have always been low average 150. Unfortunately I've recently progressed to MF with level 3 fibrosis. Maybe a cytoreductive medicine would have stopped that happening.
I was diagnosed with ET aged 39 and was put on cytoreductive medication immediately. I think that's just what was done back then and I didn't question it. As you know, I also progressed to MF so perhaps it makes no difference either way. I hope so, as it would be painful to think it could have been avoided.
Age is a somewhat arbitrary number in relation to health. Some people at 60 are ‘old’ others are ‘young and vital’. I’m in no way giving any medial advice, only saying things I would consider. First I would discuss with my Medical Professionals my biological age and health. Second I would identify and measure other predictive factors that demonstrate the likelihood of the concern (stroke - other blood test, family history, lifestyle etc.). After I had assessed the risk I would compare the benefits and hazards of the medication and science behind the mechanism that make it work. Does it improve the pathways that contribute to the issue and or contributors. Are the potential side effects worse than the benefits?
Hi peachjoy I was 66 when I went on hydroycabmide this year like you I was really scared anxiety through the roof and crying you are not alone it's a great forum and lovely kind people on here a lot of us have been were you are now! I was scared to take that first tablet thinking I'd get every side effect which is only natural but just a sore mouth now and again, I feel better on it than not.. Best wishes
Your situation sounds very similar to mine except I'm diagnosed with PV. I was 43 when I was diagnosed and am now 61. I'm super fit (workout daily) and have no other medical problems. I've been on a regimen of aspirin and phlebotomys when needed. My hematologist in Alaska just went by the book......meaning that if you turn 60 your considered high risk instead of treating me individually. He wanted to put me on HU right away and I refused this drug because of skin cancer being a family problem. Instead I started taking low dose Pegasys (22.5mcg) My liver did not tolerate this drug well. Had a few side affects like brain fog and achy joints/muscles that occurred off and on even though I'm on a very very low dose. I recently consulted with my MPN specialist via teleconference (saw him in person at age 45) he recommended that I take 2 aspirin a day with phlebotomys when needed. He doesn't believe the age thing at all, and says each person needs to be assessed individually. I"m now living winters in Arizona so am seeing a new hematologist. He said the age 60 and risk is used for people who were diagnosed when they are in their 60's not people like you and I who have had the blood disorder for 15 years. You need to get more opinions from other doctors. Don't assume your hematologist knows it all. Also be an advocate for yourself! Oh, I've quit taking Pegasys (tired of brain fog) and am back on aspirin 2 times a day. Feel much better so quality of life is better. May revisit Ropeg someday (less side affects) if my platelets get over 1000. Good luck and don't settle for one doctors opinion.
I’ve certainly learnt already that there are differing opinions amongst the medics. I will certainly ask about what you mentioned regarding 60 + being higher risk for those diagnosed in their 60s.
Skin and sunshine are a matter for me to think about given my being in Spain a great deal.
I’m also not too keen on adding to any muscular aches…but I guess we all react differently.
Hi, like yourself I am very active but was diagnosed with ET almost two years ago as I was 61 years old at the time I was put straight onto hydroxy alongside clopidogril. It was explained to me that being over 60 puts you at greater risk of cardio vascular events so it was a general policy to commence hydroxy at this age. I was rather shocked as I did not feel unwell and would not have known I had the condition had it not been for the fact that it was discovered after a routine health check. The hydroxy reduced my platelet count and I continue with my active life, I feel lucky this was picked up before something like a stroke occurred. Life goes on as normal so enjoy your activities and try not to stress yourself needlessly. best wishes.
I was very similar except already on clopidogrel after a stent was put in my thigh because of peripheral arterial disease. So I was not really in a position to argue against starting on the hydroxycarbamde in my 60s ! But I too am asymptomatic. Platelets 300-500 on 1000 a day from high c800
I was Dx at age 61 and started on Hydroxy right away. My PLT was near 1000 and my HCT was upper 40's. We need to keep HCT less than 45 (~43 for women), this is known to relate to risk.
Are your various blood counts other than platelets ok? If so the Hydroxy could take them too low. You should discuss this possibility with your haematologist. I got bad effects when my HCT went below 40 and I then cut the HC dose.
If you do start Hydroxy, remember it doesn't need to be all or nothing. Just as we got old slowly, a dose can grow slowly. It can be less that 500mg/day if your Dr feels that is enough. It is also available in pills less than 500 if that is appropriate.
I think we should all be taken individually with how our bodies cope with our condition. Lots of help here on this site which is wonderful. I personally have found that I need to think for myself and discuss thoroughly with my very patient haematologist. I must be one of her worst cases😅. Medication is scary but if and when you decide to take up medication it often isn’t really as bad as you expect. I am on Pegysus and was petrified at first but luckily with no side effects look upon it as my friend. Worth checking out and discussing all options as there isn’t just one. Good luck and let us know how you get on
Yes, I very much want to be seen as an individual. I think the worst thing about my recent proposed change of management was that it was on a phone call.
After 16 years of a 3 monthly blood check, platelet count in ‘my normal’ range…I was suddenly blindsided by a phone call from 2 doctors, one of which I’ve never met!
Peachjoy, I appreciate your post as you have cited the same concerns that I have had. I am 56 years old, diagnosed with ET approximately 8 years ago (but looking at prior bloodwork/platelet counts, I have likely had ET for > 10 years). My platelet counts have been relatively stable (~ 600). Only treatment now is 81 mg aspirin.
Both my regular doctor and an MPN expert who I recently saw have told me that at age 60, consideration has to be given to other treatment given the increased risk for stroke/cardio issues. I am taking things day-to-day and make whatever decision I need to when the time comes. Beginning a course of meds sounds daunting, but I think recovering from a stroke may be worse. Not a fun crossroads for sure.
Hi LT55, we are very similar, re our histories and platelet counts. I have the added issue of JAK2 positive, which apparently adds to my new ‘high risk’ status…
Agree with your comments. I am planning to continue to educate myself so I can have a productive conversation with my doctors if/as my situation changes. Even if the situation is just that I cross over to the definition of "old" (>60) - LOL!
My MPN Specialist told me "65 is the new 35." I like that doc!
We do not all age at the same rate. The age 60 protocol is valid based on large numbers of people with ET but may or may not apply to any one individual. As with all things MPN, we have to weigh the risks/benefits of any treatment choice. Your plan to educate yourself is a good one. You will be much better able to make good decisions that way. here are a few links you may find of interest.
I am sure you will be ready by the time you have your anointment with the MPN Specialist. I always go with a written list of quesio0ns an issues I want to address. I follow a set format to ensure all my docs know what my goals and preferences are as well.
Thank you. Yes, a month to prepare, in lots of ways!
I now have a notebook on the kitchen table, already filling with questions which I and my husband write down as they occur to us.
I will type them up logically and print them out before the big day.
The more I’m learning…the more questions!
I’m also working on losing a few pounds and increasing my fitness workouts in order to be in peak condition. (Apart from my raised, but not outrageous platelet count 633 in November and being JAK2 +…there is little else wrong with me.🤞🤞🤞)
I resolutely refuse to accept that being 62 years is ‘old’.
I do like the way you seem to be very involved in the direction of your own treatment.
I will post more when the time comes…and maybe ask more questions before then.
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