Actually I’m only 89 years 5 months, but on September 1st I was diagnosed with the above.
A general blood test showed platelets had risen from 446 last October to 600 July 2023.
A great deal of information was given to me by the Associate Specialist and the Specialist Nurse.
The information was, in fact, too much to absorb with much flying over
my head and words I could not say let alone understand.
A prescription was given to me along with two booklets about E.T. etc and one with phone numbers of nurses to contact. And off I went into an unknown world where I didn’t want to be.
As I read the literature I realised the hydroxycarbamide (500 gems a day)
could be a life changer I didn’t want. My research on my disease has led me to you. And as I read
your stories it opened up the world of Thrombocytosis and what it meant for different people.
I will say no more and await your comments regarding the age I am and the stage of my ET.
L would add I take the blood thinners Apixaban, 5 mg, morning and night.
My grateful thanks for being there and having tested the waters for those of us about to put a toe in.
Written by
Suzukigirl
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Welcome to our friendly and supportive forum, great you found us.
I was diagnosed with ET ( Jak2+) in 2016 and have been on hydroxycarbamide ever since then with no issues, maybe a bit of fatigue from time to time, but in all honesty that could be related to the disease, age or a combination of all of these. All my counts are within normal range (CHR), and have been for the last seven years.
You will read some negative comments about hydroxycarbamide on here, but I always say those who have issues with this medication come onto the forum to discuss this and look for help and support. The reality is those who have no issues, and there are many of us have nothing to discuss, so that may appear to give an unbalanced account.
I’m sure you’ll get a great response from our lovely members.
hello Suzukigirl, welcome to our forum. It can be very daunting when you are newly diagnosed, there is such a lot to understand and learn, I would suggest that as well as the booklets you were given to read, you have a look at our website mpnvoice.org.uk there is lots of information on there about ET and the different medications used to treat it and also lots of information about lifestyle etc.
It is difficult when you have to take any medication for ET, when you read the leaflets about them they sound quite scary and quite off-putting, but many people do take Hydroxycarbamide, it is a well used medication and does a good job for most people in controlling their platelet counts, and although there are a lot of side effects listed, bear in mind that not everyone does experience them all, and some not at all. I have been taking it myself since 2008 and find it works very well in controlling my platelets and my other symptoms, of fatigue and dizziness, though I do still suffer with these on occasions, but not as bad as I did before taking Hydroxycarbamide.
We are all here to help and support you, so once again, welcome. Maz
You have had some good advice already, one tip which may be useful for future consultations is to record the session on your phone, if you don’t use such tech then maybe take a friend along with you and ask them to take notes or they can record it on your phone and they could then e mail it to you and you can listen to it anytime
Hello and welcome to the club that no one wanted to join but all are glad to be members of.
It would be hard for any of us to comment on the stage of ET without more information. It is ultimately a conversation to have with a MPN Specialist. Note that not all hematologists have expertise in MPNs. It helps to talk to a MPN expert provider. Here is a list. mpnforum.com/list-hem./
Having a JAK2 positive ET means different things for different people. One of the main risks is thrombosis (clots) but there is also a risk of hemorrhage (bleeding). It sounds like you have already been taking Apixaban. If you have a prior incident of thrombosis or another risk factor for it then this should be a significant concern.
The JAK2 mutation also causes the body to make excess inflammatory cytokines. This is thought to be responsible for many of the secondary symptoms we experience. Controlling inflammation can significantly improve quality of life. There are interventions that can help with this if you identify the need.
There are several key questions to consider in making a decision about how or whether to treat the ET.
What are your treatment goals? We can often break this down into quality of life and length of life. Which is more important to you? How do you define quality of life? What are your treatment priorities going to be? You are the only one who can decide.
What is your risk tolerance? What risks are you willing to take to achieve your treatment goals. Which risks do you prefer to take? Note that not treating also carries its own risks. Every one of the choices has its own risk/benefit profile. When you line each of your choices up, what is your preference? You are the only one who can decide.
What is your treatment preference based on ALL of the treatment options you have. There are more choices than hydroxycarbamide. Other options include, Pegasys, anagrelide, blood-thinner-only, and drugs in clinical trials. Each one of these choices has pros and cons. Each has its own list of contraindications. Once you review all of your options you can make an informed choice.
Two of the primary choices to treat ET in high-risk patients (age > 60/65, other health conditions) are hydroxycarbamide and Pegasys. Both are cytoreductive gents but they work in different ways. Here is a short article about this choice. mpnjournal.org/how-i-treat-...
Some people can tolerate hydroxycarbamide and benefit from it. The same is true for Pegasys and the other treatment options. We are each different in how we respond to the treatment options. I am one who could not tolerate HU and I was refractory to it. I did much better on the interferons (Pegasys/Besremi). However, that is my experience. Your experience may not be the same.
It sounds like the key decision is actually whether to engage in cytoreductive treatment at all. Some people opt not to regardless of their age and other risk factors. That is your right and responsibility to decide. The decision should be based on your treatment goals, risk tolerance, and treatment preferences. The decision needs to based on an objective evaluation of all of your choices. It is normal to experience fear in reviewing the choices but the decision cannot be based on fear. It helps to have someone objective to talk to to review all of your options.
I am a 68-year old with JAK2+ PV that progressed from ET. I am currently treating with Besremi and anti-inflammatory interventions. I feel better now than I did 10 years ago. My treatment plan has significantly improved my quality of life and will likely extend the length of my life as well.
Wonderful that you have tried out the medication, such a help. Hope you keep very well and for all of us with ET , its such a great support to find fellow comrades who have gone through the ordeal of finding out they have a blood cancer.
Hi, I have been on Hydroxycarbamide since February 2008. I am now 68. Since retiring I have found living with ET a lot easier as I can do things at my own pace. The Hydroxy has kept my platelets well controlled.
Personally I think you should give it a go and if you have problems I’m sure the doctor will change it. Good luck on your journey and try not to worry you can still enjoy life with ET & Hydroxycarbamide
DearSuzukigirl I have been on hyroxycarbamide for three years I have some fatigue and struggle in hot weather. Don’t know if it’s the E T. Or the drugs or just my age 74. What i do know is that I want to avoid having a stroke. My platelets are 360. Now as opposed to 1200 three years ago
hi there . I was diagnosed with ET this February and am on a daily dose of hydroxycarbimide 500mg
Within 6 months my platelets are now within normal range and have been given permission to travel abroad. Side effects in my case, fatigue , sore elbows and sore tendons at back of heels but can live with that as drug is working. Wishing you the best of luck xx
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MDS/MPN - JAK 2
Jak 2 exon 12
jak 2 positive
PV at 76 years of age
