Hi All, New here feeling a bit run down and fed up. I have not yet been diagnosed but have been with my hemotolgist for a couple of months after getting high haemoglobin and hemocrit readings from a pre op… they started me on 3 weekly veinsections and asprin straight away. My spleen scans came back as normal my JAK 2 came back negative. But my EPO levels came back below 1 .. there now testing for other mutations like the JAK exon 12 and others .. waiting for a bone marrow biopsy next week and then appointments with the respitority clinic at the end of the month. Feeling very up and down atm and wondering if anyone else is having or had a journey like this .. ive just turned 42 and feeling exhausted xx
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Hello there @Lou3001, welcome to the forum. Sounds like you’ve been going through testing and treatment like venesections as well as awaiting results, which can all be so stressful and tiring.
I’m glad you found the forum, it’s been really helpful for me since I went through similar tests to the ones you mentioned. Since 2023 I’ve had regular blood tests and venesections while already taking aspirin, so can likely imagine what you might be experiencing. It really can feel exhausting having blood removed regularly. I find going into hospital can itself be tiring.
From my non-medical perspective, I’d say try to give yourself a break and not feel like there’s anything you could have done to have changed this. You’re looking after yourself by getting tested and following treatment. Whatever the gene mutation testing finds, or doesn’t, you’re seeking answers to health concerns which is great.
It might be that the exhaustion is linked to any undiagnosed conditions you’re being tested for, in which case I’d say try to bear with it. Once the bone marrow biopsy (BMB) is done your specialists should have all the information they need for treating you. But for now it’s a lot of waiting, which I personally find really difficult. Have you got any hobbies or pastimes that might distract you for now @Lou3001? I got back into favourite old films and TV and did lots of furious hiking!
Anyway, the forum is here for you during the testing and beyond. Maybe have a look around the forum to get some tips about that upcoming BMB. Do you have a loved one to talk with about all this, maybe to attend appointments with you to help take notes? Do please let us know how it goes.
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Thanks so much Duncan for replying.. im struggling with this im a single self employed mum to a 17 year old .. ive not told her the possible diagnosis yet although she knows im having veinsections and tests etc the bmb is scaring me im really freaked out by all of this . So I trurely appreciate your reply x
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You’re welcome @Lou3001, I was thinking more about your predicament, about whether to share more with your daughter, and you know her best of course.
Do you think she might understand any recent change in moods or worries better if she had this extra information about the testing and treatment you’re undergoing? She’s considered a young adult at 17 and this could be a great role-modelling experienced for her, seeing and hearing her mum being vulnerable but also treating her like an adult with this information.
Maybe she could accompany you to the BMB and help you home afterwards? I don’t think we can have loved ones inside the room when we have a BMB, but could she be waiting for you after? My other half waited for me which was really comforting. At the very least it’s helpful to have someone to help guide us home after having anaesthetic, which I highly recommend you ask for with the BMB.
I’d say there’s no right or wrong way to share this sort of news, but hopefully it’ll come up naturally and help explain stuff that your daughter has likely already picked up. She might have already googled it all!
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Hi @Lou3001
It’s very difficult having to share news with those closest to you.
I know when I was first diagnosed shared the news with very few people.
The Bone Marrow Biopsy is talked about a lot. It’s definitely not something you would choose to have.
Equally it’s the only way the Haematologists can get real insight into your condition and work out a treatment plan.
I agree with @Duncan that it might be beneficial to have your daughter with you if at all possible or even a friend when you have your BMB.
Hope that helps.
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Hi @lou3001 , I’m in the same situation as you. I’ve had blood transfusions more than six times, every six weeks. The results for the JAK2, MPL, and CARL mutations were negative. I still need to have the JAK2 Exson 12 mutation test and a bone marrow biopsy done, and the waiting is worrying.
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Im so sorry to here this.. i know how stressful this .. my hemotolgist keeps bouncing from Polycythaemia vera ('PV') to secondary.. but im displaying no secondry symptoms .. whens your bone marrow biopsy? Im waiting on the other mutations tests but my epo was so low they were concerned.. next time I see the consultant they should have bmb, mutations results , respotority etc so I hope I get an answer .. how is this effecting your daily self ? Xx
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Duncan, ive shared with my parents who are excellent there also in there late 70s .. I agree my daughter at 17 should be involved and she is to a degree but I feel she dosent need to know till a diagnosis is made .. maybe im wrong .. there is only me and her .. so I dont want to worry her unduly.. how long ago were you diagnosed Duncan.. maybe you could give me some more perspective maybe im over thinking the prognosis … or potential.. at the moment it feels overwhelming
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Sorry the below answer was at both @DuncanB @Duncan .. thank you both for your comments I truly appreciate it
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Excellent that shared with parents @Lou3001
You will know when the time is right to discuss things with daughter.
The waiting for results is hard for sure.
Even tougher when waiting for diagnosis.
I found it easier to just wait for diagnosis and then sit down with the Consultant to look at next steps.
I’m very much of the mindset of focus on what you can influence and let go of what you can’t control.
Hope that helps
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My pleasure @Lou3001, I really know how it can be and wish you did not have to! Like @DuncanB says, it’s great that you’ve told your parents. A problem shared is a problem halved, and all that. I found it got easier the more trusted people I told. Now I tell baristas or whoever if I think it might help to inform others of these rare blood cancers! I totally understand what you mean about not wanting to worry your daughter though, I’m sure you’ll know the right time. Has she asked if anything is wrong?
After I was diagnosed in 2023 it felt like I needed to understand Polycythaemia vera ('PV') better before telling loved ones, but actually I went through something like grief and was really angry a lot! Hearing I had cancer was devastating. This sort of spurred me into joining here, reading research, and asking my specialists about what to expect from living with Polycythaemia vera ('PV'), things to watch out for, what to expect from medication and its side effects… So many questions!
But it showed me that I wanted to live beyond the diagnosis. I wrote it all down and kind of worked through my queries with my phlebotomists who I saw every fortnight initially, then monthly, now every few months. I gave my Polycythaemia vera ('PV') a silly name and now speak disparagingly of it like it’s a rubbish companion I have to drag along with me! It still amazes me but now I feel like yes I can actually live into old age with this.
Something my lovely haematologist tells me which I like to share is that we are more likely to live into old age with Polycythaemia vera ('PV') than die from Polycythaemia vera ('PV'). We can live normal lives with some slight adaptations, especially if diagnosed under 60 (considered ‘young’). So while I am not a doctor I would say focusing more on your potentially long life ahead is a great way to approach this horrible diagnosis.
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Hello again @Aziz1, I’m so sorry to read of all the testing and waiting you’re experiencing. It sounds like you’re under the care of specialists with those regular appointments. Are you having blood removed every 6 weeks? It can get a little tiring having it often, if my experiences of phlebotomy after diagnosis are like yours.
Have you been able to get a rough idea of when your results will come back, @Aziz1? Might be worth chasing up the doctors who did the testing, to show you’re keen to know the results. Also, I understand that you might get results faster by using the NHS app, here’s the one for NHS England: NHS App - NHS
Hope your results come through soon, I know how slow the waits can feel. Time to find some distracting activities, I’d say!
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