Just diagnosed with Essential Thrombocythaemia just cant' believe what is happening. Had bowel cancer (2015 surgery) and am still being monitored for it(hopefully last scan Dec 2019)!
Going to local hospital tomorrow to collect 'Chemo' capsules-am very anxious about taking them but I have to-(also taking aspirin)-feel so frightened didn't know I had this blood cancer. Sitting here alone(husband has gone to a meeting)No children -not many relations either.(I am 74 yrs old)female.
Any advice would be helpful especially re Hydroxycarbamide which I will be starting tomorrow!
Thank you in advance for any advice/info!
Ratton
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Ratton726
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Hi and understand your worry’s I was diagnosed In 2005 my life turned up said down was seen within two Weeks of blood test saw a very nice haematologist and had to take hydrox tablets and 75g aspirin am now taking aspirin only taking hydrox was to lower my platelets It’s been a Journey of 14 years understand so much more then first diagnosed ! Try to learn about ET but also try not to read to much as I did can be scary ! am still here living a very active life 14yrs on !
I freaked out at first,(6 months ago) but i realized that survival prognosis of this disorder is excellent, as everyone else. The only worry that i struggle until now,is the 15% chances ET progresses to MF. But i try to remind my self that even if this is the case,new drugs are under development and hopefully on the market within next 5 years that potentially could halt the disease,so i try to calm down. Also, post -ET/PV MF is a little bit different and less aggressive than PMF. In the the meantime, i try to help myself with psychotherapy (as always did) ,so i can be in the side of myself and not against as i always was!
As for Hydro, I can't offer an advice as i only take aspirin for now, but from many many MANY posts that i have read in here, i have the sence that all these people do quite perfect on it and i am sure that will reassure you about it.
I strongly believe that you (and i also!) should transform your life to What you have always imagined and live well, with new friends/relationships that feed your soul and mentality. Also i find that walks and life outside of the house are very refreshing & meaningful.
Welcome to the forum. You will always get good advice here. I also have ET, diagnosed in 2012 and take hydroxy. The main side effect for a lot of people, though not all, is fatigue. I find it best to take it at night so that I sleep through the initial effect. As long as it keeps your platelets under control you can hopefully lead a normal life. Good luck.
I’ve been on Hydroxy for almost two years (1000mg for four days, 1500mg for three).
Please don’t panic too much about taking it...all will be well! Yes, there is fatigue, but regular light exercise (eg walking) really helps. I take my capsules at night so have always slept through any possible unpleasant effects and so have never needed to take anti-sickness pills, thankfully. One thing that really helps is drinking lots and lots and lots of water. That doesn’t come easy to me, but I soon know when I haven’t drunk enough!!! Also really helps withe the fatigue...good luck x
Hi. Welcome to our exclusive club! As far as Hydroxy is concerned, I spent months angsting over (and avoiding) starting drug treatment. In retrospect an utter waste of energy and mental anguish! They have been little miracle pills. My platelet count has tumbled and I regained some of the old mojo.
The reality is that the overwhelming majority of patients experience only benefits and no unwelcome side effects. It’s true, a tiny minority find it hard to tolerate. But those scary (though necessary) patient information leaflets - never mind Dr Google - can lead you a merry dance.
As others have said diagnosis can really mess with your head. It can feel overwhelming. No doubt compounded for you by your recent cancer experience. But give it time and it will settle down. Wishing you all the best.
You are experiencing the anxiety we all felt when first diagnosed and told you have to have chemotherapy.
I got diagnosed with PV a week after being given the all clear from breast cancer so, like you, I was floored. After having Hydroxycarbomide I can honestly tell you it was the best thing I could have been given. All my blood counts went into the "normal" range, I could feel my feet again and, all in all, I felt a 100% better.
There are side effects, the severity of which depends upon each individual but, honestly, you will be far better with the medication than without and any niggly side effects are far better than having a stroke!
Most important advice I can give is DO NOT GOOGLE. I can recommend the MacMillan Cancer website who gives you the ins and outs of the condition, and you will find endless information from the people on this forum, people who live virtually normal, long lives with your condition.
ET is not a death sentence. Take the tablets and enjoy your life. If you have any questions then please come back and ask anybody on here. This place is like a second home to me and I know if I have any queries then I only have to ask.
Now take a deep breath, pour yourself a cup of tea and relax.
Welcome to the group. With ET we can still live a normal life, everyone reacts different to side effects that by the way doesn't mean everyone will get it. I was anxious when first diagnosed especially the first HU in my mouth. But once we learn about the nature of ET, we'll feel better. I have been fine with HU, my stomach couldn't tolerate aspirin Soni take clopidogrel. Everything is fine at this stage. You'll be fine.
Hi there, what an awful blow after bowel cancer. The emotional impact must be horrendous and my heart goes out to you. If I can use an illustration of a cold, flu and pneumonia to compare to the cancer world, you have a cold. Admittedly it's a everlasting one! I agree with Garstongal advice and hopefully nothing will change for you. Have they found a gene mutation? My ET calr platelets currently only 600 but take hydroxy and clopidriol because of age and symptoms. The only thing that has changed really is fatigue, water consumption and keeping out of the sun. Oh and taking the pills every day!
Your husband was at a meeting? Was it work or does he have a hobby? A new hobby or interest might be good for you to consider to distract and refocus the mind for an hour or two. Try not to worry and keep drinking lots of water. 🤗
Hi Bridie-husband was at a LIONS meet-(I have just resigned from it)didn't go much for it-I do other things-Literary Lunches (with our local theatre charity)-and also political events-have some new friends whom we will be meeting this w/end for a meal! I do go out and like to enjoy things socially! Thanks for your response.wish you well.( I have always been a water drinker, ever since bowel cancer -and before -brought up with drinking water from early age! My diet is also good-no takeaways !
I always say “if you’re going to get cancer ET is the one to get” I was diagnosed in 2008 and prescribed hydroxy. I currently take 2000mg four days and 1500 three days a week. It was very scary when I was first diagnosed. But I found MPN voice and this site which has really helped. I think initially the fatigue was the worst. I had a very taxing and stressful job with huge responsibilities and really couldn’t cope with the exhaustion that I felt and the brain fog. Eventually I hung up my stethoscope and took early retirement. I can honestly say it was the best thing I ever did. I do lots of travelling now. I’m always out and about and making the most of life. Learn to pace yourself is my advice. Listen to your body. Rest when you need to and party when you can. Stay positive my friend having an MPN and being on Hydroxy is not the end of the world.
I hated taking the Hydroxurea sand still do but it has helped me tremendously! Sorry to hear that you had bowel cancer and now this one. You can live a long time with this type especially with exercise, rest, and drink lots of water. This is a good forum to be on, lots of advice and understanding. Take care!
I was diagnosed with ET over 30 years ago. About 6 years ago, it progressed into PV. I am still alive and kicking at age 64, despite having also had surgery for atrial tachycardia and for a brain tumor all in the last year. The MPNs are generally slow developing disorders that have more impact on quality of life than its length. I find the secondary inflammatory conditions that come from the JAK2 mutation to be more troublesome than the issues that the aberrant blood cells cause. I have never had any thrombosis; in fact, in my situation I am more at risk for hemorrhage than a thrombotic event.
Regarding the hydroxycarbamide (AKA hydroxyurea) - know that we each respond differently to it. Some tolerate it is and benefit from it with little or no trouble. Others do not need it and/or do not tolerate it. You will not know until you know about your own response. Likewise - your presentation of the ET may or may not fit the "norm" for this disorder. There are a number of different factors that will play into how your ET will present, including your underlying genetics and the other co-occurring medical conditions. What is really important is to figure out what your individual profile and needs actually are.
You did not mention whether your are JAK2 positive (or present with one of the other driver mutations). If JAK2 positive - it is important to find out what your mutant allele burden is. This will bear on the severity of MPN symptoms. Given your history of a previous cancer, it is possible that one of the non-driver mutations (e.g. TP53) may play a role since they impact multiple types of cancers.
It is really helpful to seek consultation with a MPN specialist. Most docs, even hematologists, do not have the KSAs to effectively treat you due to the rarity of MPNs. Here is a list of patient recommended docs with MPN expertise mpnforum.com/list-hem./ . It is very important to find a doc who has the expertise to individualize your treatment based on your unique presentation of the ET. It is worth travelling and taking the extra effort to get to a true expert if you can not find one close by.
Sorry to hear about your new diagnosis, especially after dealing with bowel cancer these last 4 years. I was diagnosed with a Et Jak2 positive in 2008 at age 52 and have been taking hydroxy ever since. I take it in the evening, also, and you should drink lots of water during the day. What is your current platelet count and what prompted the diagnosis?
You will find great support her and lots of good information.
Hi Cja1956-current platelet count is 630-it was 718-phew glad its lower now.Have had sticky blood ever since bowel cancer surgery 2015-I think ? no one queried it -but I spoke to my colo-rectal consultant and asked him to contact the haematologist here E Sussex-which he did-I saw a registrar earlier in 2019 but bloods results weren't all received by the time I had the appointment so couldn't decide what problem was-Only got phone call 2 weeks ago from Haematologist and was seen and told the news!
Hi Ratton, sorry to hear that you have joined us in the mpn group. I will be 70 in a month and so far only take aspirin. I am also type 2 diabetic. I am so far ET Jak 2+ . My platelets run between 459 and 550 so far. My platelets began a steady march upward in 2004 went above the limit in 2011 and was finally officially diagnosed in 2018. I have very few symptoms thus far. Maybe I should be on meds but neither of my 2 hematologists think it necessary thus far, maybe I am their guinea pig. My point is to try not to worry yourself to death even though it is a severe blow when you learn you have a blood cancer you can live a very long time with this desease and like others have said you will probably die of something else. The best advice I have is to find a good hematologist, a specialist in mpn's if possible, do what they tell you and then go out and live your life as if you did not have this disease as much as humanly possible. If you don't you just might miss a lot of living. So stay positive and best wishes to you on your journey, there are a lot of us on the same road.
Hi, I’m 51 and was diagnosed with ET at the age of 28 after having a heart attack. I’ve been on the capsules since with no ill effects. Hope the same for you 👍🏻
Hi. It’s such a scary time for all of us when we first hear the news and especially if we’re told we need to take chemo pills. But the amazing thing is that in a short time it will no longer be at all scary and most importantly you’ll be protected by the Hydroxyurea from having serious problems from blood clots. Too many of us ended up with permanent limitations caused by damage from blood clots before we were diagnosed. It will sound strange, but in one way you’re fortunate because they found out before anything bad happened. Would be better of course if you didn’t have it at all. Most on here have no problems on HU & if you do have problems please ask us for suggestions. Mouth sores can occur if you don’t take it properly. I’ve found I can prevent them if I swallow water immediately before putting the pill(s) in my mouth and after swallowing them quickly my mouth automatically gets rinsed with water as I’m drinking a couple of swallows of water. If you drink 2 liters a day you’ll be in good shape. There are other tips too that we can share if you have any problems. Some in our group have had ET over 30 years and have felt fine the entire time. Be sure to ask your family & friends to give any emotional support you need in these early days when things can be stressful. And remember that since there are folks on here from all over the world, no matter what time a day it is you can get some emotional support from us, ask questions, etc. You’re now a member of some of the best folks you’ll ever get to know! Hang in there and don’t forget how much we care about you!! Katie
When I was diagnosed 18 years ago ET wasn't classified as a blood cancer, just a blood disorder. I took in the words that my platelets weren't behaving as they should but also that I was, at that time, a low risk case due to my age, platelet count and absence of blood clots. Are you at medium or high risk? Maybe your counts aren't so high (you haven't said). My advice is not to panic and DO NOT focus on the blood cancer term. It's just a term and is only a means of classifying the disease; it's not a progressive cancer...
Secondly, I was on hydroxyurea for over a year. It didn't cause any side effects, none except maybe a little more fatigue. Don't worry about things that may never happen. Your medication might improve your platelet counts and you may have no side effects. You're wasting precious time in worrying about stuff that may never happen. Good luck with it all, but stress isn't good for anyone!
I was diagnosed with ET when I was 39 and I'm now 58. For most of that time I was on Hydroxycarbamide and really lived a very normal life. When my dose was higher I used to get mouth ulcers but apart from that nothing to speak of and reasonably high energy levels. I'm now on Pegasys and am suffering much more with side effects but it seems to be doing good things for my blood.
Hi, I should be starting tabs this week. Like yourself feel very unsure and confused about it all. We all need to stay positive - but sometimes easier said than done. Stay well.
Glad it is going ok for you so far. Sure it will stay that way.
I just need to start taking hydrea - keep pushing back. Taking a toxic drug doesn't sit well as always eaten healthy - now taking something to destroy cells.
Mum started with cancer at my age - think it lives with you.
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