Yes @RA2000 I was entitled to some benefits. I have some unrelated medical conditions also. Macmillan Cancer Care and Citizens Advice Bureau helped me with various claims. X
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It’s gave me some encouragement that you have lived with this condition for 30 years here’s to hoping you live another 30 years, cancer sucks x
Hi @Cli, thanks for reaching out and sharing your recent diagnosis on this forum. It’s a shock when you first find out but hopefully you’ve been provided with the Essential thrombocythemia (ET) booklet which I found hugely reassuring, not just for me but for my family too.
Your diagnosis sounds just like mine, Essential thrombocythemia (ET) but low risk, ie platelets are high but on the low side of high, just taking 75mg aspirin per day which is very positive. You should be given a named nurse from the Haematology Department who will inform you when you need an appointment and to provide you with blood forms for a test before you go. I’ve been advised I’ll need follow up roughly every 3 months. If your platelets do rise, then there is medication that will stabilise them. People with Essential thrombocythemia (ET) are expected to live a normal lifespan, which is very positive.
There’s lots of positive stories on here that have really helped and inspired me and made me feel much better about receiving this diagnosis.
I’ve been told by the Haematology Department I don’t need to make any changes to my lifestyle and to carry on as I am which I’m happy about. The booklet encourages you to stay active which I do and that helps the mindset.
Hopefully this will make you feel a bit more assured. I found out in May and was really quite upset but after being on here, absorbing the booklet and with a bit of time, I’m in a much better place about it. If you haven’t been sent the booklet, I think you can download it from the Blood Cancer website.
Wishing you all the best in your journey.
Julia xx
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Hi @lady_b, thanks for your message, wow we are so nearly twins!!! Like you, I was pretty shocked but also relieved to have found out what was going on after 5 months of blood tests and trips back and forth to the Doc.
Im glad to hear that you’re feeling safer under the Myeloproliferative neoplasms (MPN) specialist, that cannot have been a pleasant experience under your original team, its bad enough to find out you’ve got a life-long condition but to be unsupported by those who are supposed to be helping is awful.
I haven’t had my first proper appointment yet since being diagnosed. I was told it will be ‘sometime in August’ so if I have to chase them up I won’t be happy.
I do feel a lot calmer about it now as it’s sunk in, this forum has helped greatly, also talking to people and reading the booklet I got sent.
Happy to keep in touch to see how our journey’s go. Take care and wishing you all the best.
Julia xx
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Hello all
I was diagnosed with Essential thrombocythemia (ET), Jac 2 mutation last month and currently taking Hydrea to reduce the platelets. Im due for a bone marrow biopsy next week. My diagnosis followed a routine blood tests following a heart attack which my consultant grimly called the “widow maker”. I got a stent in my heart. In the heart artery called the LAD. Im 67 and hope to live many more years taking care to apply factor 50 in this lovely sunny weather. Im fine apart from bouts of being tired with little energy. But difficult to know if this is just age or the Hydrea. Im fit and otherwise healthy, never smoked. I cant help but feel a bit unlucky having a heart event and a cancer diagnosis in 24 months. “Thems the breaks” as someone once said. Thanks for all your contributions. Lovely to be part of this community of survivors.
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Hi @Aidan , many thanks for your message and indeed, it has made me feel more reassured about having it done. I haven’t been told I need it yet, at the moment its my choice whether to do it.
I was planning on waiting until I’d had my next lot of blood tests and follow-up with the Haematology Team in August to see if my platelets had risen by much and if they have, then I was going to do it then.
I’m glad to hear that your treatment plan is working well for you and the platelets have come down.
That’s a very good idea to jot down any questions as you always come out of an appointment thinking I wish I’d said that! This will be my first appointment since my diagnosis so I will have plenty of questions for them.
I’m in a much better place about it now than I was, reading the booklet given to me helped and also the most helpful thing is this wonderful forum where I’ve read some extremely encouraging stories that have given me great hope that I can be expected to live a pretry normal life so I’ll take that 
I wish you all the best in your journey and thank you again for sharing your experience.
Julia xx
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@Jules17 Glad to hear that you’re in a better place now… Receiving a diagnosis of Essential thrombocythemia (ET) is - to put it mildly - unsettling. However there is lots of helpful advice available at this site and from other reputable sources (including, of course, our haematology teams). In my case, I found a lot of such advice very reassuring and now - almost a year since I had my diagnosis - I have very few major worries. A number of minor day-to-day concerns, of course. But then I’ve always had minor day-to-day concerns. My overall strategy is to continue to enjoy life and to be thankful that my diagnosis came at a time when the condition was manageable without massive doses of hydroxycarbamide…
Very best wishes.
Aidan
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Hi Jules
I’ve not been on here for a while, but just checked in.
I was diagnosed with blood cancer on 10th march and the prognosis was weeks/months rather than months/years…
Yes a huge shock…i’ve got an extremely good relationship with my consultant and put my trust in him completely..
Been on certain meds since…now off all but folic acid and vitamins B12 and magnesium…also on Homeopathic treatments.
I’ve read some incredible BOOKS which might help…
Mind-body connection and the immune system
Mind over Medicine
Eat to beat Disease…
A POSITIVE attitude certainly helps if you can…and i’m convinced DIET plays a vital role…
I’m now into my 4th month and planning a short trip to Portugal Late September…
GOOD LUCK..
Also a good support system is vital…i’m lucky i have two wonderful daughters who are with me every step of the way..and a great group of friends…
Hi @Mindovermedicine, thanks for your message. I’m sorry to read that you were given weeks/months. I can’t imagine the shock of hearing that, a good support system is vital when you’re trying to process what youve just been told.
Your message is extremely positive to read, I find this forum so helpful as everybody’s experience is different. I have taken heed of the healthy diet, fortunately I do eat quite healthy with lots of fresh produce and not a lot of processed stuff, plus I find exercise helps too.
Can I just ask was it your choice to come off the meds and introduce some homeopathic treatments?
Thank you for recommending the books, I find reading about it helps to reassure me.
It’s great to read that you are going to Portugal too, I hope you have a lovely time and the change of scenery is so good for the soul.
I wish you all the very best in your journey and thank you for reaching out.
Julia xx
Hi Jules
Most of my medication has been reduced/stopped by my consultant.
At the outset I was not offered chemotherapy or radiotherapy as I’m assuming I was deemed terminal…and I would not have benefited from it.
I was on a certain amount of ‘pills’ plus an injection I have every three weeks…
Plus regular Blood Transfusions …which worked enormously…
But all I take now is Folic acid, vit B12 and magnesium +plus my three weekly injection …plus my Homeopathic meds…
All transfusions have stopped for the foreseeable…I was told at the outset that they would work for ‘a while’ then …they wouldn’t…I’m guessing that my bone marrow has been kick started as my hemoglobin is up to around 108 at the moment and that maybe down the line I will need to have to resort to having them again at some stage…MAYBE NOT !!!
Hope that explains things…all in the lap of the gods…
Onwards and upwards
Hello there @Mindovermedicine, welcome to the forum.
I wasn’t sure which blood cancer you were diagnosed with as you haven’t mentioned, so I hope you don’t mind but I checked for your previous posts and couldn’t find any to be able to direct you to appropriate information.
Assuming you have an interest in Essential thrombocythemia (ET) as this thread has many people living with it, perhaps you might like to read about the evidence-based research Blood Cancer UK has written: Essential thrombocythaemia | Blood Cancer UK
I see from your comments that you say you’re not taking any medicine and appear to be recommending to others that they may not need any. We’re not advised to share medical advice around the forum as that’s what our specialist doctors are for.
As a former homeopathy user, it saddens me to say that it’s been shown for many years to be ineffective and certainly not ever recommended for blood cancer treatment in any of the research or conferences I’ve attended. I’d say please be wary of pinning your hopes on treating what you’ve been diagnosed with using homeopathy and multivitamins.
If you’d like to go talk this over with specialist nurses then the lovely Blood Cancer UK folks can be called on 0808 2080 888 for advice and to check what your options are for your own illness.
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Hi @Mindovermedicine this sounds an incredibly tough situation for you, not to mention extremely emotional. We need to have a good relationship with those in the Haematology profession who are guiding us and advising of the best course of treatment and you have that.
I have my follow up appointment on the 7th August, this will be the first one since diagnosis, so I’m going to go well armed with quite a few questions and hope that a good relationship is formed. I’ll decide on the bone marrow biopsy following this and depending whether my platelets have risen even further.
Reading your story and others on here has made me feel grateful that all I have to currently do is take 75mg of Aspirin and hopefully it will stay that way 
Wishing you all the very best in your treatment plan and hope you enjoy a well earned break in Portugal.
Julia xx
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Good luck Jules…forming a good trusting relationship with your consultant is EVERYTHING…
if you have that trust and belief it will help greatly…a positive attitude and a healthy diet…i recommend EAT TO BEAT DISEASE by Dr William Li…and not sure if a mentioned it..but a good informative podcast is The Exam room…
Hi Julia, sorry for late reply to your message! Essential thrombocythemia (ET) takes over doesn’t it? Even though my platelets weren’t super high (590 at their highest), I was started on hydroxy by the original consultant. I’m still on it at present but the plan with my new Myeloproliferative neoplasms (MPN) team is to switch to interferon. Even though the hydroxy has already bought my platelets down to 360-ish in 6 weeks, I feel even more fatigued that ever on the hydroxy. I also really like the idea that interferon seems to have a impact on disease progression, so I’m going to give that a go. I’m definitely not as frantic about the Essential thrombocythemia (ET) diagnosis and feel so much better for being a proper team who understand the condition. hopefully you will find the same. It’s funny how quickly Essential thrombocythemia (ET) has become the new normal!
Have you looked at the Myeloproliferative neoplasms (MPN) Voice webpage? They’ve been invaluable to me. Great information and their Health Unlocked page is great. I’m going to go to one of their Myeloproliferative neoplasms (MPN) face to face forums in the Autumn which I think will be helpful. I’ve also signed up for their buddy scheme which I think will be helpful. Hopefully you’ve got the date for your first ‘proper’ appointment now. Hope it goes well!
Elaine xx
Hi @LadyB
Thanks for your message, I’m so glad for you that the team you are now under is meeting your needs and sorting out meds for you that will hopefully make you feel better and not so fatigued. Also, that you’re not so frantic about the diagnosis – I do find it gets easier as the months go by. I don’t think I’ve really experienced much fatigue from it yet, what I have noticed is that my energy levels have definitely reduced.
I have my first appointment since diagnosis on the 7th August and I did have to put in a chaser which I was really not happy with, however they booked my appointment straight away for me but I will say something about it next week.
I’ve started a list of things to ask them and one of them is about medication. The highest my platelets have been is 578 which was in February of this year, in April they’d gone down to 550 so I’m guessing that’s a good thing – who knows. I guess they won’t put me on anything until I need it and if my platelets are stabilising then I’ll probably be ok with just the aspirin – I’ll know more after the 7th.
Thanks very much for the pointers, I’ve checked out the Myeloproliferative neoplasms (MPN) Voice webpage and like the Blood Cancer website, found it very informative – I love reading the stories as they really empower me that I’m going to carry on living my life as I was previously - I do have a pretty busy life, working full time, plus going to the gym 3 x times a week for 1.5 hours at a time and I do like to socialise, plus doing a lot of walking and learning the piano – I intend to carry on for as long as I can!
I think it’s great that you’re going to go to one of the forums, I’ve looked at the upcoming ones and none of them are near me, however I’ll contact them to find out if there will be one a bit nearer to me in the future
I’ll be really interested to hear how you get on with the Interferon and the forum so please let me know how you find it. I’ve had some encouraging messages re the bone marrow biopsy which I might have following my appointment, have you had that done?
Take care and good luck with your ongoing journey.
Julia
Hi @RA2000
Just reading through the comments as catching up on the messages and it’s abit of a shock when you’re first told about this. Especially living a normal life span. From Reading other stories the haemotology team will keep track of blood tests and appointments so rest assured try not to worry. My next blood test is not until few months after I was told and then I went on this forum and it gave me reassurance others were going through the same thing. I get the impression they have to tell you what it could lead to as it’s their job however they will Keep Track of everything. So think of it you are now being looked after. I hope you’re feeling ok. Do you often get tired?
Hi Julia - how did you get on with your appointment? hope you got some answers. The interferon transition is going well so far I’m pleased to report! I’m still physically exhausted but my mind is so much clearer which is great. I feel like I can at least think now! Also no side effects so far from the interferon - I started very low 45mcg every fortnight. The Myeloproliferative neoplasms (MPN) Voice forum was good and I would recommend going to one when they are in your area. Apparently they do move around from year to year. Be interested to hear how you’re getting on when you get a moment! take care, Elaine
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Hi Elaine
Lovely to hear from you - sorry for the late reply – I totally missed your email until I was going through my inbox earlier today 
My appointment was OK thanks, I was told to just carry on with what I’m doing which was fine by me! My next one is due in November but I haven’t heard anything yet so I guess I’ll have to put in a chaser. I’ve since been on holiday and didn’t have any issues thankfully.
I’m going to have a bone marrow biopsy on the 10th November which I’m really not looking forward to but have been advised its best to have it done and people have advised on here too, so I am.
I’m pleased to hear that your interferon transition is going well, that’s a big positive. Unfortunately I think the physical exhaustion is something that comes with having Essential thrombocythemia (ET) and it varies between people. Will your dose increase over time or can you stay on the dose you’re on if it suits? That’s great that you enjoyed the forum too, there is one in London this month but it’s a whole day – was your one a whole day? I’d be really interested to hear the speaking and personal experiences of people.
Fortunately, I don’t feel OK at the mo so I’m just cracking on with everyday life. I did have a few days towards the end of August when I just didn’t feel right – I don’t know what it was, whether it was anything to do with the Essential thrombocythemia (ET) but it lasted about 5 days, I had no appetite and just felt rubbish but thankfully it went and I’ve been ok since. The only thing I experience quite regularly is a feeling of giddiness every now and again but it passes as quickly as it comes on.
Hopefully you will continue well with the Interferon and it may help ease the fatigue as that can be so draining. We’re at the beginning of this Essential thrombocythemia (ET) journey and I do feel positive that life can continue pretty much as it was - albeit the energy levels are not what they were!!
Please keep in touch and let me know how you’re getting on. I’ll let you know how I get on with the biopsy.
Take care, Julia