I am in top shape. Have been a runner for 30 years and still doing long distances. Really upset learning I need to take a chemo drug for this. Has anyone 60+ just do phlebotomy and asprin? I know they are afraid of heart attack and blood clots but I am 70 going on 45!!! Need some advice. I am asymptomatic
Thank you
Hi Sunnylesser, I can appreciate how you feel. I was diagnosed with ET two years ago, and as I’m over 60 was told I would have to take HU and aspirin. I was fit and active, swimming competitively, training, running, gym etc. I just couldn’t believe that I had to take medication mainly because of my age. In the end after discussion with the consultant and doing my own research, ( this site was so helpful, with people always willing to talk about their experiences), I opted for interferon injections rather than HU. They were reluctant at first for me to do this as the doctor told me that older people often didn’t cope with the side effects as well, (but I personally think cost has quite a lot to do with it as well!). I find that the day after my weekly injection I feel tired, so I made that a rest day but otherwise continue mainly as normal. Good Luck for the future, I know the initial shock of finding out that you’re not as fit and healthy as you thought you were is initially devastating, but it takes a little time to come to terms with it and form a plan of action to carry on.
I've been on Hydroxy for nearly 10 years for ET CALR+. I've been highly active with soccer playing and gardening throughout but at times the chemo makes my tongue a bit sore and my toenails are slowly going black (big toes only). Interferon was recommended for the future, but the prices are WAY out of range. Hope it works well for you! Were you able to get something through your hematologist?
I’m in the UK so was eventually able to get Pegasys through the NHS, Unfortunately after over a year my platelets are still over 600 so I’ve had to keep increasing my dosage as I don’t seem very sensitive to it. I’m still hoping I will eventually get into normal range as otherwise I’m quite happy on the treatment with few side effects.
My platelet range is 700-800, but with CALR+ clotting is less likely.
Hi Sunnylesser, welcome to the forum. I know how you feel, I was diagnosed with ET JAK 2 positive back in 2013 and have been on Hydroxycarbamide and Aspirin ever since with no problems, and to be truthful I have so much more energy as before I had so many health problems, now I keep fit with a daily work out, walking, and I also use a static bike and hopefully back to swimming soon. I eat a well balanced diet plenty of fruit and veg included, plus plenty of water at least two litres a day.
I am myself a 71 years young 🤪 but feel a lot younger I enjoy life to the full, and having ET does not define me anymore, just take the tablets and get on with my life.
There are quite a range of age groups on our forum all with different stories to tell, so you have come to the right place.
Jean
Welcome to the forum. Glad you found your way here.
I am 65 with PV and have been doing phlebotomy-only for the last several years. Also discontinued the aspirin due to my excessive bleeding/bruising and another medical issue. I have tried hydroxyurea (HU) in the past and could not tolerate it. Toxicity even at very low doses. Due to current PV symptoms and problems with the long-term impact of chronic iron deficiency from the phlebotomies, we have decided to initiate treatment with PEGylated Interferon (PEG-IFN). I will do my first injection two days from now.
The recommendation for cytoreduction is based on the age-based risk protocol. The protocol is valid for predicting risk for large number of people with PV, but may or may not apply individually to you. We each age differently. We each need an individually tailored treatment protocol based on our unique presentation of our MPN. This may or may not include cytoreduction to minimize symptoms and risks in managing PV. For many of us older people with PV, it does involve cytoreductive treatment.
You do have options for treating the PV other than HU. Here in the USA, HU is not FDA approved to treat PV, but is in common use off-label. The only med currently approved is Jakafi, but it is considered a second-line treatment. Pegasys (peginterferon alpha 2a) is the other first-line PV treatment. It is also off-label for PV treatment, but in common use. HU and PEG-IFN work in different ways. Both can reduce risks and help with symptoms. Current research indicated PEG-IFN is superior in reducing risk of disease progression (it can be disease modifying). It would be a very good idea to understand each of these meds, how they work, and what the risk/benefit profile of each medication is before you make a decision. Also note that there is a newer form of PEG-IFN called Besremi (ropegylated interferon) that is within months of FDA approval for treating PV in the USA.
It has already been noted that the price difference drives the formularies to access medications. HU costs about $70/month. Pegasys costs about $4,400/month. Jakafi costs about $14,000/month. Insurance companies prefer cheaper drugs. Doctors are pushed to prescribe cheaper drugs. This is a reality in all health care systems. The bottom line is that you will need to review each of your options, looking at the risk/benefit profile of each med and based on your priorities, preferences and risk-tolerance make a decision.
It is very important to know that most hematologists do not have the KSAs to provide optimal treatment for MPNs. These are very rare disorders. It is important to consult with a MPN Specialist to ensure that you receive optimal individualized care. Here is a list of docs with the requisite expertise. mpnforum.com/list-hem./ .
All the best yo you as you start this journey,
Phlebotomy was never offered to me. How often do you do it? When you say you were on aspirin what was your dosage? I have written you before and I am also in America and on hydroxyurea every third day 500 mg but recently I am feeling tired and I am interested in other options. My platelets went down significantly and are at 589 which I’m quite happy with and would love to get on a lower dose of hydroxyurea. I will talk to my hematologist about phlebotomy!
Phlebotomy is the treatment standard for PV to reduce erythrocytosis. It reduces RBC mass in the short term and the induced iron deficiency controls the production of red blood cells. The iron deficiency can, however, increase thrombocytosis. It is not used in treating ET.
You have already reached the target platelet count of ≤ 600,000/mcL recommended by the Richard Silver MPN Center at Weill Cornell. (J Clin Oncol 8:556-62, 1990: NEJM 332:1132-1135, 1995). silvermpncenter.weill.corne...
It is reasonable to talk to your hematologist about backing off the HU a bit if you think you are experiencing adverse effects from the HU. Asthenia is a common adverse effect with HU, but can also result from the MPN or another cause (e.g. anemia - which is also a HU AE). Sorting that out is a bit of a deductive process. Look at the timing of when the fatigue started is a big clue.
You do have other options for treating the ET if you choose to pursue them. here are a couple of articles on the topic.
mpnjournal.org/how-i-treat-...
legeforeningen.no/contentas...
Hope that helps.
Thank you !
Hi sunnylesser
Remember the total shock I was in with my diagnosis. It is an indiscriminate thing, having an MPN.
I’m so opposite you, 20 years younger going on your age....but took my well functioning body for granted for years.
Let us, this supportive and informative community know a bit more about your diagnosis, there are some super knowledgeable people and many who challenge the treatment options.
Which MPN do you have, and how did your diagnosis come about, what tests have they done?
You will get great information here, but from me, life doesn’t have to stop, you can carry on being fit and functioning! It’s fab you’re so active and you’re rightly concerned about what you’re being told. It’s a rare cancer and general haematologists follow a treatment pathway, without being specialist.
Don’t overload yourself too much with trying to find information, some of us will respond soon with great advice and links to research,
Keep being young and a hug from me, I’m not as good at the specific info as also still processing my diagnosis xox
Get ye to a MPN specialist and talk out your treatment/management plan with them. It really is the BEST way to manage your diagnosis. Keep on running 😊 you got this!
hi Sunnylesser and welcome to our forum. We all completely understand how you are feeling, it is very daunting when you are first diagnosed, particularly if you are very fit and active and asymptomatic, and it is very hard to understand the need for medication. I can see that you have had a lot of advice from others, and I hope that it helps. You need to discuss this with your doctor and ask her/him to explain the reasons why medication has been advised, what are your risk factors, and what choices do you have regarding which medication to take and then you can make a decision on what is best for you. Best wishes, Maz
Hi Sunnylesser. We all sympathise with you on your diagnosis, it is always a shock. And it doesn't have to do with your fitness but your genetics. Some recent research has found that the mutations can even start in utero, so there's not much you could have done about it. But it usually doesn't show up until you are older.
It's good that you are fit as that should help you manage any symptoms of both the disease and any treatment. And there's no reason you can't keep running. Many on here start significant exercise programs when they are diagnosed and fitness is important to manage symptoms when they do emerge. A good diet is also important (such as mediterranean diet) and if you have PV, drinking at least 2 litres of water each day. As a runner you may already do this.
It would be helpful if people on this site know which MPN you have, so their information can support you the best possible way, especially if they have similar experiences to you.
Some over 60's on this site just do phlebotomy and aspirin. It depends on a number of things, especially your chance of a clot. It's better taking meds than having a clot when you reach that risk level. You need a good haem to help you keep on top of that, and as others on here have said, you need an MPN specialist, not just any haem - even though they may be expert in other areas.
All the best and feel free to post any questions as I'm sure you will get a lot of support here.
Welcome to our forum, Sunny lesser.
I too was diagnosed at age 70 with ET and was completely shocked given my years of running and following a very healthy lifestyle. I was also asymptomatic and was only diagnosed after routine bloodwork showed platelets exceeded the norm. My hematologist immediately recommended chemo, (at my first consultation) and I went home to think about it... or more exactly to worry about it. My first stop was this forum from which I have taken great comfort and sound advice. Before my next appt she had consulted an MPN specialist, a colleague with whom she works, who reviewed my file and advised aspirin only plus monitoring. Needless to say, I was delighted she had sought a more experienced opinion and this has been my regime ever since, (1.5 yrs).
As others have told you an MPN specialist will do more than simply follow the textbook but bring experience to bear. Just because you are over 60 yrs should not negate all other factors, such as symptoms, platelet levels, general health.
You will find this forum an enormous font of knowledge and support.
Dear Franklyspeaking,Your nite was just what I wanted to hear today! May I ask who your specialist is? I have had 2 consults with Yale and Boston Ma
Both Specialists in PV
They both said chemo is the only way to stop more RBC from reproducing and my age is a high risk for arterial and venous blood clotting.I was thinking today maybe I will start with phlebotomy and aspirin and hold off a little so I can enjoy the summer then start in August or Sept. Any thoughts welcomed.
That’s great you have been ok without it!!!!!
Thanks for writing to me , your time is appreciated.
Thank you
Sunny
Since I am in Canada my MPN specialist would probably not be available to you but I note you indicate having PV while I have ET which are different MPNs and I failed to see reference to which MPN you have in your original post. However, Hunter provided a link to a list of MPN specialists and you will see there are 3 in the Boston area. Best to consult one of them.
Hi Sunny, you sound just like me! I was diagnosed shockingly with PV from a random blood test when I was 43. At the time I had just completed 2 Ironman triathlons, several marathons and am still an avid swimmer. I went to an MPN specialist at the Mayo clinic, Dr. Tefferi who advised just aspirin and phlebotomies because I was in such great shape and very low risk. He told me I'll live a very long time as my "pipes are clean" and due to my fitness level. This regimen worked wonderfully for me for years and then I turned 60 last Nov. which is considered high risk. UGH!!! My hematologist said my age indicated I needed to go on a drug. I hate putting drugs in my body and especially the chemo drug HU which also can cause skin cancer which runs in my family! So I went on HU just for 2 months so I could get the full effect of the Covid vaccine as my drug of choice is Pegasys. So for the last 3 months I've been being monitored every 2 weeks for figuring out dosing. I've had no effects of the Pegasys (45mcg) low dose weekly, except rising ALT or liver enzymes which got so high that I'm now on a 3-4 week break to get them to come back down. I will then go on even a smaller dose. I was happy with the results of what the drug was doing.....Lowered HCT, Platelets and white. I've been off of it for 3 weeks and the HCT is still lowering and haven't needed a phlebotomy for 3 months as it's still working in the bone marrow. Your question is a great one about going on drugs after age 60 if your in incredible shape and asymptomatic. My Platelets were around 1070 and whites around 25. I know that is high but I was considered stable (not rising) and just did phlebotomies every 3-4 months when HCT's rose. This drug thing has been exhausting trying to figure it out and frequent doctor visits and blood draws! Sorry for the long narrative just needed to vent.
Thank you for responding ! I was happy to hear you are still active and enjoying your fitness even with medication . Did you hair thin out at all? I recently had hand surgery CMC which is when they discovered the blood issue.I have been in a cast for 6 weeks and have more to go. They want me to start phlebotomy and hydrea at the same time but my head can’t take all of this at once. I think I will stick with the aspirin and phlebotomy and wait a few months and then start the chemo drug. I am turning 70 in July and would like to feel like myself . Any thoughts or comments?Many thank!
Hi Sunny, its hard to tell if my hair is affected but it does seem like my hair is coming out more now that I'm taking a month off from Pegasys! Its just hard to tell as I have long fairly thick fine hair that always looks like a lot of hair is coming out but definitely no obvious balding signs. It has definitely thinned a little. That's always a big worry of mine with these drugs as my hair is one of my few assets!! 😂 I've found that I've always had to be a big advocate for myself in terms of what I think is best for my body and what I think is going on when discussing things with the hematologist. My Doc is good but he is new to this PV and Pegasys treatment. I've had to do lots of research myself. Take care and stay in touch with what you decide to do. Best Wishes Kerry
Read your reply and found very interesting! I too was shocked when diagnosed as was seemingly very fit and healthy, although not quite Ironman fit! I’m curious though...were you on aspirin and phlebotomy only for roughly 17 years? That’s awesome if so. Also, did you continue at your same athletic pace or scale back at all and did you find your fitness regime was hindered in any way? And finally I’m curious as to what your diet has been over the years. Thanks in advance for sharing!
I think the most important thing to remember is that it is up to you what you do and you have time on your side. If your numbers are way up - then venesections to get them down may be immediately required - then after that, what area are your problems in?
Doctors offer 'medication' advice - and that is what they are required to do, and do so immediately.
Dietitians offer dietary advice .... and so it goes on.
I did research as getting as much advice as possible over as many areas as possible. I have never, ever liked taking pills or medication and will only do so if I have no other choice. Just me - but there you are, and for sure I have not looked at every area (heavens, the fatigue to start with was diabolocal)
I had always been fit, excellent diet .... but PV is in my family with 2 other members having it and dying from stroke and leukemia. So - I know how serious it can be.
4 years after diagnosis I am feeling better than 10, 20 years ago. It has been the diet I changed. Keto style eating with lots of bone broth - with the real boost being adding fermented drinks (milk kefir, kombucha) and veges. I have no idea how long I will be able to continue without drugs and using the regime I do, but that where I am at present.
I still go to my mpn specialist, and she know what I am doing. She has written an official letter to me and my MD saying what she has advised and that I am not taking her advice etc. But - she is taking an active interest in my health, what I am doing and my results. (I self regulate blood tests and do a phlebotomy if required). I will keep seeing both her and my MD, it is just that I know they are 'ethically' required to advise what they do and that they are unable to give advice about using other approaches. For me that is liberating - there is not conflict, just options from various fields.
Pegasys will make you feel fatigued at first, but gets easier when you’ve been on it a bit. I’m 66 and it works well for my MF.
Best wishes for your journey!
Where WE go one, we go ALL 🤙🏽
Hi SunnyI have only been on aspirin and phlebotomy since 2015,diagnosed with PV Jak 2.
I’m fit and active (walk /swim daily/golf badly)
The phlebotomies are not controlling the progression now,as venesections (400-450mls)are more frequent :increase from 8 weeks to monthly or less.
I am iron deficient,and suffer from fatigue.
A big ‘but’ ...I am still waking,swimming etc ,albeit less.
I would like to investigate further about side effects with pegylated inf.or HU.
It may be a case of try and see.
My expert haematology team(Prof Harrison )are reluctant to
-repeat another Jak 2 test to discover the progression of the PV etc,
-consider Peginterferon
They only offered HU treatment as an alternative.
I got the opinion that expense was paramount in their decision
Correct medication results in less treatment in the long run.
I’m an NHS patient.
I’m tempted to continue venesections and aspirin for the next few months, read about further research and advice,through this excellent site,which has been amazing and seriously informative.
It will help with the next stage of enquiry ,regarding meds.,when I see ‘the team’
Good luck,and keep us posted..
Alexandra
Newly diagnosed
Newly diagnosed 
Newly diagnosed with pv
Newly diagnosed 
