New here? Feel free to introduce yourself here 👋

Thank you @Erica . I’ll keep posting and it’s good to know there is support out there.

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Hi. My name is Alison. I live in South Essex. My dad was diagnosed with myelodisplasia about 10 years ago. He has no active treatment for it and has regular blood tests which always come back as abnormal but normal for him. He also has a dodgy heart valve that he won’t have surgery to correct.

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A great big welcome @Ali24 to our forum and thanks for telling us about your dad.
I have another blood cancer and have had no active treatment for 19 yrs, yes, one of the ‘abnormal’ but normal for me’ and long may that continue.
I picked up on your dad saying he won’t have the surgery to have his heart valve corrected.
I think it is so difficult for the loved ones being unable to perhaps get a patient to take the course of action we would like them to.
I would like to hear more about you and how you are doing?
The Blood Cancer UK support line is always there if you would like to talk to someone on 0808 2080 888.
Care for yourself as well as you care for your dad and please keep posting

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Hello and may I say what a great idea to have a forum for advice and topics of conversation which help massively in supporting people like me who live alone. My name is Garry and I am 68 years old and live in the Bristol area on my own. I have recently been diagnosed with Acute leukemia and other matters I can’t spell. I have undergone the induction Chemotherapy and the ongoing second protocol but unfortunately, some 15 days after my last bag of chemo my bloods have crashed to less than 0.05 on all fronts so I am confined to home. Mentally trying to cope alone is a huge problem as my ‘team’ are a good hour and a half drive away and sometimes phone calls just don’t do it. I would like to ask please, having been offered a STC and because I have no family there is no exact match for a donor and so I face the problems of side effects more than most. I would like to hear from anyone who has had an STC at a late age without siblings and their views or advice. Thank you in anticipation.

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Hi @GazM a really great big welcome to our forum, you are no longer alone because you are now part of our forum family.
I will copy you post to the Blood Cancer UK nurses in case they can help you at all. @BloodCancerUK_Nurses
The Blood Cancer UK support line is also there for you if you would like to talk to someone on 0808 2080 888.
You are so right when you say it is the mental impacts that are so difficult to cope with.
I often say when I was diagnosed my emotions went onto high alert and I do not think that has changed in the last 19 yrs, I am now 73 yr old.
Don’t worry about not getting all the medical terms I am like that too, even now.
The Blood Cancer UK website has a lot of reliable information on it.
If you feel it helps please write down all your questions before appointments.
I hope someone will be able to share their experiences.
I look forward to hearing more about you, please keep posting and really look after yourself.

Hi @GazM,

I do hope you’re doing okay. Thank you for posting and a warm welcome to the forum. It’s so understandable to have questions around this and it must be tough having your team so far away. I wondered if you’d seen this thread, which I’ll share here in case it’s useful at all- Awaiting or considering or had a stem cell transplant, a place to share here - Going through treatment - Blood Cancer UK Forum .

We also have this booklet, which you can download a PDF copy of or order to be delivered to you - Blood stem cell and bone marrow transplants booklet | Blood Cancer UK Shop .

Take care and please don’t hesitate to reach out to us if we can support you at all (Blood cancer information and support by phone and email | Blood Cancer UK).

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Hey there @Nickijc , I’ve recently been in a very similar Schrödinger’s cat type of scenario as you of being tested for JAK2 whilst also wondering what its result might mean. Perhaps most people on this forum know this. I would say, from my experience, that the waiting is the worst part.

After testing positive for JAK2 I went on to have a bone marrow aspiration and biopsy which diagnosed me with polycythaemia vera and now I take daily aspirin and hydroxyurea and am starting venesection tomorrow. I experienced shock at my diagnosis and survivor’s guilt at having no symptoms while others go through horror, but I’m also grieving for my pre-cancerous self and lost future.

Obviously “Dr Google” can lead to some worrying nonsense, but if you want to read official medical research and can decipher its formal language you might find it helpful for reducing anxiety about JAK2 mutations and related disorders. Once I got my test result I could read away and get a better idea of what I was facing, which was preferable to the seeming aeons of not knowing in between.

I really empathise with you, it’s tough being in limbo. I would say, considering your stressful job, try to find time to slow down and breathe deeply every day to give your heart a break and find some peace in amongst the inevitable worry. Take time to yourself, in nature if possible, and expect to feel moody and existential and maybe even a sense of shock when the result comes through. And then you’ll be onto the next batch of worry! And repeat…

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Hi Duncan, thank you for responding to my comment. I am counting down the days and am sort of preparing myself for whatever the results are. One minute I keep thinking there can’t be anything wrong with me, but then I think well they wouldn’t send me for the test for no reason. I’m sorry to hear that you are going through Polycythaemia vera (PV). It must be difficult to accept but at least you are getting the treatment you need now. So did you not have any symptons at all? How was you diagnosed? Did you have to have a bone marrow biopsy straight away? Sorry for the questions. I just want to gather as much information as I can. Can I also ask you what level your platelets were at? Thank you :grin:

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Hey @Nickijc, thank you for your concern. No worries about asking stuff, this is what this forum seems great for!

Acceptance of all this has definitely been hard, almost denial at times, but like with other types of grief it seems to ebb a bit and become more tolerable. Sometimes I even forget! Could be the fatigue and/or chemo brain. And then I remember again and have big old pangs of anger at it.

So yes, I had no symptoms at all. I was diagnosed formally via a pelvic bone marrow aspiration and biopsy—not very aspirational! Earlier this year I found out a relative has a blood disorder and told my doctor who had my blood checked for the JAK2 gene mutation during an otherwise routine blood test. Its result came back later as positive and my doctor got everything rolling with further complex blood tests. The aspiration and biopsy were done about 6 weeks after the JAK2 result came through and a week later my haematologist confirmed the dreaded Polycythaemia vera (PV) diagnosis. So it was less than 7 weeks between the JAK2 test result and the Polycythaemia vera (PV) diagnosis.

I get the impression that many people with blood disorders like mine have it the other way round, where they have a health crisis first that takes them to hospital, whereupon blood tests show the gene mutation and then they go onto further diagnosis, sometimes without the bone marrow aspiration.

I should add, and I’m not exaggerating, the nurse who did the aspiration was so great that I felt literally no pain and only a brief moment of discomfort as he was skilled enough to anaesthetise me and do the procedure without causing any twinges of pain. For me it kind of felt like having your mouth anaesthetised to remove an adult tooth, if you know that sensation, but in your lower back. So if a bone marrow aspiration is something that you need to have, try not to worry as it can be as pain-free as just having an injection.

As for my platelet count, my understanding of Polycythaemia vera (PV) is that it’s the proliferation of red blood cells that needs reducing (hence it being called a myeloproliferative disorder or Myeloproliferative neoplasms (MPN)), but I have elevated platelets too at about 492 K/uL which should be between 140-400.

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It sounds to me @Duncan that you were lucky enough to have a very vigilant doctor.
Look after yourself and please keep posting

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Hi @Duncan , thank you for your message. I still can’t believe at times that I’m going through this,so it really helps speaking to others who are already going through the same thing. You sound like you are very positive and that’s great to hear. My platelets have gone from 380 to 450 in the last year but it’s only just being picked up. My drs said that my bloods were abnormal last year and that I was supposed to contact my gp, but I wouldn’t have know unless they told me. I really hope your treatment is not too harsh. Are you taking tablet form of chemo? Any way I will keep you posted once I get my results. Take care

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My doctor is so lovely, she’s really gone above and beyond what I expected and, don’t tell anyone, but I got a great big hug from her after my diagnosis and it was lovely. Some doctors really are in it because they care and hold us in mind :smiling_face_with_three_hearts:

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Ha it’s funny to think I come across as positive as I live with PTSD and can easily slip into catastrophic thinking about the littlest things. This diagnosis kind of puts a lot of my anxious thinking into perspective! Glad it helps to share my experiences with you, I hate to think that others go through this enormous stress, treading water emotionally while awaiting life-changing results…

It’s a pity those doctors didn’t pass on your health information to your doctor, but I guess they have now and you’re stuck in between these different departments doing their things while your brain quietly explodes from worry! Try to give yourself a break, however that might be. I’m a keen hiker and find forest-bathing really helpful for totally decompressing and forgetting about city drama and putting on a brave face around people and all that stuff.

Yep so I take a daily hydroxyurea 500 mg pill. Once I got over the sci-fi weirdness of having chemotherapy in pill form, my haematologist told me it’s a low dose and shouldn’t give me strong side effects so I’m trying to acclimatise to the cancer-related fatigue. Keeping my fingers crossed that you won’t have any of this malarkey!

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Oh, I bet that great big hug meant more than any words can @Duncan .
Your hiking and forest bathing sounds great to me, although I think I will stick to my walking, I just love the solitude for clearing the mind.
Please do post when you feel anxious, many of us probably also have anxiety, especially before and during medical tests and appointments.
My emotions have been on high alert since I was diagnosed.
It takes time to understand fatigue and the cause and affect in yourself, mine is caused by what personally stresses me, emotional, medical, physical and practical things.
Take care

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It really did, @Erica! I love a good hug. My doctor is about my age and has big maternal energy which was most welcome as my mum is no longer around and most of my loved ones are many miles away. Know what you mean about sharing anxiety to lessen it or maybe normalise that it’s to be expected. Wish I’d known how to manage it many years ago but here we are now, still plodding along, so I must be doing something right!

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It’s amazing when you find a doctor like yours. It really does make such a difference :blush:

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So true, @Nichola75! Wish I could share mine with you all, so the least I can do is let people know there are some incredibly caring doctors out there. Especially awe-inspiring considering the pandemic must have disillusioned so many healthcare professionals, and yet here they are still tending to our terrible disorders and related emotional upheaval!

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It sure is
My consultant at diagnosis has always been lovely for a hug I found it hard when she left a year ago

The consultants I see now have no interest to even write down my blood numbers or wear a mask without making me feel like I’m asking for the world
It’s hard to establish any relationship now to the point I would rather not go to clinic and have my blood results by phone

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Hi everyone. I’m asking for any advice or information really. Last Monday I had a cbc at the Dr due to constant pains in my right leg. On Wednesday he called me back and asked I take someone with me. My husband and I sat while he tried to explain how I may have blood cancer. It’s all a blur really. All I managed to remember was I have an extremely high white blood cell count, Leukocytosis. And I would receive a phone call from the hospital to see the haematologist within 2 weeks. We discussed how I was feeling in myself and symptoms. My appointment at the hospital is in a week.
My minds working overtime ! I’m spending hours reading as much as I can to understand.
I keep thinking, have I just got an infection as I’ve been in bed all week with a really bad cough and cold or does the Dr already know it’s blood cancer. I’m very much a need to know person so prefer to know what I’m dealing with. Does the Dr already know or is this just precaution ?
Also, can I ask what I should expect from the hospital appointment? I didn’t even ask ! Thank you :pray:

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Hi @Nik and welcome to the forum. Understandably this is a really worrying time. I think we all felt like that at the beginning of our journey, especially around diagnosis.
What I would say is make sure you take somebody with you as often we are so worried we don’t really listen to what’s going on.
I will share the link for the support line as sometimes it helps to talk things through and think about what you need to know - questions to ask etc.
There is also information on the website on what to expect at your first appointment but keep in mind, this is when you have been diagnosed. However, it might worth a read as some of the tests may be suggested.
I’m sure others will share their experiences to. Please keep us updated on how you are doing. I’ll check in in a couple of days X

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