Thrombocytosis/ mild leucocytosis

[Hope2-Optimism]

Hi all,

This is my first post here, as I'm new to this. Feeling quite stressed and somewhat confused, (despite being reasonably well informed re: my conditio). Emotionally, not doing great even though I know lots of people have far more difficult situations to deal with.

Just a bit of background to my situation. Over the past few years I have experienced on going skin issues i.e. Abcesses and cold sore/ recurring and shingles. Predominately on my face. Very painful and debilitating - not to mention unsightly at times. Despite being recalled for repeated blood test and investigation at Dermatology dept. etc I was eventually referred to a heamotologist, ( about 12 months ago). I do not have JAK2 or CALR mutation and naively thought I'm okay then.

I declined bone marrow aspiration, as was advised this was quite painful and unpleasant. Wasn't actually given a diagnosis. Just that my blood was a bit thick and too many platelets and that I needed to take 75mg aspirin.

I had been feeling very tried and run down for the past couple of years and experiencing ongoing infections.

I had been on 3 month checkups at hospital and recently went in December. The consultant I usually saw was off- but the one I saw advised that my platelet level had dropped but it was still higher than it should be. She then gave me an appt. for 6 months time with Clinical Nurse Specialist and a year with the consultant. I was feeling quite good, but then she gave me a leaflet and I went off. In the car reading it the leaflet was titled - Essential Thrombocythemia. I was quite taken a back when I saw blood and lymphatic cancer.

I rang back and the Consultant returned my call. I asked if I had the condition and her reply was 'you're being treated for essential thrombocythemia'. My platelets were 468 and I'm having B12 injections which have helped with the tiredness, but still feel exhausted. Now having palpitations and having to gave ECG, ( as pulse rate too fast). Think this is possibly down to anxiety!!

Feeling a bit fed up that despite knowing I have this condition there doesn't seem much I can do to help myself, apart from taking aspirin.

Every time I do much physical activity my hands and feet seem to go very red and I feel trembly and so fatigued.

Does anyone have any ideas to improve my resilience and get more energy.

I did take anti viral s for a while to help stave off ongoing cold sores, but they soon return. Have tried lysine too, but not sure if I can take this.

Any ideas to help me physically and emotionally would be very much appreciated. Sorry to have gone on. I know people have so much worse situations.

Thank you in anticipation. Xx

[katiewalsh]

Hi. Is the doctor who gave you the pamphlet a specialist in MPNS? So far it doesn’t sound definite that that’s what you have. If s/he doesn’t specialize in MPNs I’d encourage you to find someone soon who does. I don’t want to offer any suggestions until it’s clear you actually have Essential thrombocytosis. So let us know please. And for right now, try not to panic please. I know that’s easier said than done & completely understand why you’re so anxious. Katie

[Mazcd Partner MPNVoice]

Hello Hope2-Optimism, welcome to our forum. We all understand how you are feeling at the moment, it is a very scary time when you are first diagnosed, especially when you are not given much information and sent out of the consultation with a booklet. I would urge you to read as much as you can on our website mpnvoice.org.uk as this has a lot of very useful information about ET, with information on medications, hints and tips on how to cope with side effects etc. There are also some very good videos of consultants and patients takling about MPNs and how they affect people. It will take you time to understand your ET and how it will affect you.

I would also suggest that you try and speak to the clinical nurse specialist, you should have her/his contact details, contact her/him and ask her/him to explain your diagnosis and to also confirm that it is definitely ET that you have.

I can also send you one of our information booklets about ET, our booklets have been written specifically for MPNs, no other diseases, and have been written by leading MPN experts and patients, email me at [e-mail] if you would like me to send you one.

Also, it might help you to have a buddy to talk to, a buddy is someone who has the same MPN as you and has had their diagnosis for more than 2 years, so they have a good understanding of what it is like to live with ET, if you think this would help let me know by email. Best wishes, Maz

[Hope2-Optimism in reply to Mazcd]

Hi Mazcd,

Thanks so much for your very kind advice. I would very much like to receive a booklet with specific information about Essential Thrombocythemia. I'm sure it would be most enlightening. Do I pop my e mail on this post or is there another way to contact you on your e mail.? Sorry to be dull!

I will consider the 'buddy' idea too.

Thanks so much.

Kind regards x

[Mazcd Partner MPNVoice in reply to Hope2-Optimism]

if you could email me and just remind me in the email that you want a booklet on ET, and the buddy information, and I will need your postal address as well. My email addres is [e-mail]

Thanks, Maz

[Hope2-Optimism in reply to Mazcd]

Thanks Maz. Will e mail you my details and requests.

Kind Regards x

[Wyebird]

Hi, I echo katiewalsh’s post. She has given you a sound post. Good luck.

[Hope2-Optimism in reply to Wyebird]

Thanks very much for reiterating Katie's post. Thank you for your sentiments. Feeling very overwhelmed and afraid. Hopefully, this forum will help. Everyone appears very supportive.

Thanks again.

[Hope2-Optimism]

Hi Katie,

Thanks for taking the time to respond. The consultant is a specialist in haemotology and although I was reluctant to have the bone marrow biopsy ( through fear ) she says they are definitely treating me for essential thrombocythemia. I have since read more about the condition and recognise that I have very red hands and feet and accompanying pain/ sensation. I have quite considerable joint pain in my knees especially and my mobility is not as good as it used to be.

I'm stressing such a lot and emotionally I'm not coping that well. My personal circumstances changed about 5 months ago and I separated from my partner after 10 years. Relocated and changed jobs- so feel a big overwhelmed with everything. Trying to not panic about my ability physically to hold down my job as some days I really have absolutely no energy and I'm so fatigues. Just waiting on more blood results, as think they may consider giving my B12 injections more regularly as initially I think this definitely helped my stamina.

Reading this back I sound soun pessimistic and fed up. Apologies, I'm usually quite a fun person.

Anyway thank you for your kindness and support.

Much valued. Hope you are doing okay with your situation too.

Thanks again x

[Wyebird]

Hi it’s wyebird,

You have an enormous mountain to climb but when you reach the top you will feel much better. Get a buddy as son as possible. If no counselling available, Macmillan offer counselling I used them once.

Why don’t you phone them now

Love and hugs.

Xxxx

[Hope2-Optimism]

Thank you so very much for your kind words and advice. So very much appreciated. Think counseling might really help. Thanks for your time responding. We are all so busy with our own lives etc, It's lovely to think someone took the time to help.

Many thanks xx