Hi
Just joined the forum. I have been diagnosed with essential thrombocymia and Monoclonal gammopathy of unknown significance (MGUS). As well as prostrate cancer.
Bit of a shock. Im on hydroxycarbamide.
Trying to adjust to the fatiuge.
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Hi @PHIL63 and a great big welcome to our forum and I am not surprised you are in a bit of shock.
You have had two pieces of news that have probably rocked your world and expectations.
Personally I would say just give yourself some time to take it all in.
As for the fatigue I expect many of us on here with all different blood cancers can relate.
I attach the Blood Cancer UK details on fatigue
Blood cancer and fatigue | Blood Cancer UK
Personally it took me a long while to work out what triggered my fatigue, since my diagnosis I don;t deal with what personally stresses me well. My fatigue can also be set off by medical, shock, emotional, psychological, physical or practical issues.
Sometimes I need to have a nap, duvet dive or even a bit of fresh air and gentle exercise.
The Blood Cancer UK support line is there for you on 0808 2080 888
I hope others will be able to share their experiences
Please do keep posting as I look forward to hearing more about you.
Be very kind to yourself and look after yourself
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Dear @PHIL63,
Welcome to our forum, I have no doubt you will get some amazing support from the community here. This must have been such a shock for you, I agree with @Erica, give yourself lots of time to digest all the information and take it all one day at a time.
We are very much here to support you and if at any point you would like to talk you can call us on 0808 208 0888.
There are some really great threads on the forum about fatigue, I have linked one here in particular which I know had some great information Ask the Nurses - Managing fatigue - General chat - Blood Cancer UK Online Community Forum
Take good care,
Heidi J (Support Services Nurse)
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Thank you for the message.
I’m bit confused by the advice given by my consultant. I asked about the fatigue and he was a bit dismissive.
Ive agreed to take part in,a reserch study and the researcher was more helpful.
Shes advised to to get my thyroid function checked. My GP is not very supportive and said I’ll need a letter from my consultant.
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Hi @PHIL63 yes, my GP has also asked for the person that thinks I need a special test to send the request in writing to them.
I just presumed it was about funding, but I don’t know.
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Hello there @PHIL63, welcome to the forum, I’m really glad you found it.
I’m sorry to read of your diagnoses, wow what a lot of stress and medical jargon you’re likely to be wading through right now. You’re not alone with these diagnoses and I hope you come to find the forum supportive as many folks here know what you’re living with and through.
While I am not a doctor, I do live with Polycythaemia vera (PV) which is closely related to the Essential thrombocythemia (ET) you’ve been diagnosed with so can empathise with what you may be experiencing. Others here on the forum live with Monoclonal gammopathy of unknown significance (MGUS), and in fact just the other day a new member spoke of their prostate cancer so perhaps check around for them.
I was diagnosed with Polycythaemia vera (PV) last year and it’s been quite the crash-course in learning about blood cancer! Polycythaemia vera (PV) and Essential thrombocythemia (ET) are similar types of Myeloproliferative neoplasms (MPN) and I also take hydroxyurea like you. The fatigue is no joke and I really feel for you as it was my worst side effect after diagnosis and starting hydroxyurea.
I see dear @Erica and @Heidi-J-BloodCancerUK have already shared information about fatigue. Perhaps you’d like to read about Essential thrombocythemia (ET) from Blood Cancer UK research: Essential thrombocythaemia | Blood Cancer UK
Here’s some information about Monoclonal gammopathy of unknown significance (MGUS): What is MGUS | Blood Cancer UK
And here is information about our family of blood cancers, MPNs: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
Fatigue with these MPNs is unfortunately very common as something like 80 % of us will experience cancer-related fatigue—it even has its own acronym, CRF, as it’s so common. The hydroxyurea being a cytoreductive type of chemotherapy is likely affecting your energy levels, and if my own experiences of fatigue are anything to go by then it does fade once your body has got more used to treatment.
I’m now onto my second haematologist who is very forthcoming with current information about MPNs which is a relief and helps me trust his judgement. You may encounter doctors who don’t consider Essential thrombocythemia (ET) a type of blood cancer, but global medical consensus since many years ago absolutely classes it as a cancer. Despite everything I read and what fellow survivors here shared, my first haematologist told me my Polycythaemia vera (PV) wasn’t a blood cancer and the hydroxyurea was not chemotherapy and thus I took the plunge and changed to a more up-to-date specialist.
I should add that both Essential thrombocythemia (ET) and Monoclonal gammopathy of unknown significance (MGUS) are considered chronic, as in slowly developing, which in some ways might feel like a relief. Some folks with chronic blood cancers only ever need “watch and wait” AKA active monitoring as treatment. Many people can live with these blood cancers for many years with minimally invasive treatments like hydroxyurea and/or occasional phlebotomy and long stretches without needing to see our specialists. Something else that reassures me is research showing MPNs like Essential thrombocythemia (ET) and Polycythaemia vera (PV) don’t shorten our lives and that we can live comfortably into old age with them and be likely to pass away from unrelated causes.
The fatigue is vile though so try to stick it out—it really got me down last year but I was able to take time to slow down and follow what my energy levels could manage and within a few months I felt more energetic again. Someone on the forum shared that they follow their energy and if fatigue is too great then to rest and resume the activity later, and that really helped me get through the worst bone-deep exhaustion.
Some things that help increase energy levels seem counterintuitive but include doing regular stretchy exercise like tai chi, Pilates and yoga. Getting early morning daylight into our eyes helps regulate our circadian rhythms and thus our sleep routines and improves energy. I love hiking and that helps with relieving stress as getting out into nature is its own form of therapy. Apparently Japanese doctors started prescribing forest-bathing for stress—imagine that on the NHS?!
Anyway I’ve gone on a bit. I hope I haven’t bombarded you! Have look around the forum for others with experiences of Essential thrombocythemia (ET), Monoclonal gammopathy of unknown significance (MGUS) and prostate cancer, you’ll find you are not alone with all this @PHIL63. Do keep posting and ask anything you want, this is a lovely supportive place.
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Hi Ducan
thanks for taking the time to post- a lot of good useful information.
I have signed up to attend a patients forum in September hosted by an organisation called Myeloproliferative neoplasms (MPN) Voice that has a number of consultants speaking and some break out groups with patients. so hopefully get a lot more information and advice when my wife and I attend.
Thanks again
Phil
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Hey there @PHIL63, it’s my pleasure to offer support and I’m chuffed anything I’ve shared might help in some way. Do keep asking away on here, there’s nothing like hearing from others actually living through all this!
That’s so excellent that you’re attending a conference, I’ve read that a few other forum members are going to them around the UK and even my dad is off to one! I attended a blood cancer conference earlier this year and it was invaluable to be around other survivors and hear their advice and swap horror stories and so on! Got loads of great current information there which is still keeping me feeling optimistic months later. I hope your conference is just as useful for you too.
Good health to you Phil, I’m glad you found the forum. Keep us posted about how you get on.
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