New here? Feel free to introduce yourself here 👋

[Nichola75]

What would we do without our wonderful family and friends!
So much has gone on for you but I’m glad things are going in the right direction at the moment

[Vera]

Hi everyone I’ve been trotting back of forth to GP with a number of vague symptoms for a year or two now.
Ive been referred to physio, gynae & had a number of full blood count blood tests for fatigue.
It came to a head these past few weeks when the symptoms crystallised into headaches, fatigue, muscle and joint pain and itchy palms and feet. It was really affecting my life, getting too tired much more quickly than my contemporaries Im 66)
I looked back on my NHS record at the full blood count results and realised Id had raised Haemoglobin and intermittently raised Haemocrit since 2018 (as far back as i could look). “No further action” had been coded against these results presumably because theyd been looking to see if i was a bjt anaemic to explain the tiredness.
Anyhow, went to see GP again and asked if she thought in might be Polycythaemia Vera? Id have to read up on that she replied
Im now referred to Haemato!ogy and have a check next week for Jak2 and erythopoetin.
Glad to have a possible explanation but obviously worried about the implications.
Ive put myself on low dose aspirin and GP called to suggest starting a statin.

[Erica]

Hi @Vera a great big welcome to our forum.
You seem to have a lot of medical knowledge.
Isn’t it difficult when we have symptoms which could be a number of conditions.
Perhaps tell everyone medical that you have put yourself on a low dose of aspirin and anything else you might be taking.
I find that it helps me to write down all my fears, questions and practicalities and symptoms so I do not forget anything.
Really look after yourself as the waiting and not knowing can be a worrying time.
Please do let us know how you get on.

[Rammie18]

Hi @Vera

Welcome to the forum and thank you for posting.

I too was and currently anaemic with extremely low iron/ferritin levels and the symptoms you’ve been feeling are associated to that. If you’ve been taking iron tablets/supplements/diet so increase these levels then that can increase your hct levels and may explain the fluctuations.

The statins will be to control your blood pressure and aspirin to thin your blood to prevent any clots without major impact to you.

I personally wouldn’t be too concerned about potentially having Polycythaemia vera (PV) until it’s confirmed. The worry and anxiousness will certainly not help as stress has such an impact on how our body is coping physically, emotionally and mentally.

It’s common to sometimes prepare for worse case scenarios but how you do it, as in online research into the condition, medications, effects to life etc can be unreliable, conflicting and contradictory so it’s always best to confer with your medical team and wait for confirmation before going through the process.

“Don’t wanna pack a suitcase before you know for certain your going on holiday and what type!”

[Vera]

Hi Erica.
Yes, I’m a retired GP Practice Nurse
Ashamed at my complete lack of knowledge on this over my career. My first thought when I saw a high haemoglobin trending in my results was Hemochromatosis.
Vague symptoms are difficult. I kept treating the individual thing - physio for joint pain, ears syringed for the tinnitus.
My big trigger was going with a walking group for an easy 4 mile stroll to a pub for lunch. I was exhausted, could hardly lift my knife and fork up whilst the 80 year olds were looking forward to the walk back, I got a bus!
I’m on a bit of a campaign now and going to chat at GPs Staff meeting about Polycythemia ( I used to locum at this surgery)
I have a couple of questions;
What’s the latest on gene mutations and family history. There seems a conflicting story. Are things like Jak2 a spontaneous mutation because blood cancers do seem to run in families?
Also, does anyone know why referral to Haematology on this is not on an urgent 2 week? The risk of stroke/MI or DVTs would make it really urgent I’d think.

[Vera]

Thanks Rammie. You’re right, I’m 90% sure I’ve got Polycythaemia vera (PV) but it’s not officially confirmed yet. I’m hoping it hasn’t progressed into anything else and trying not to catastrophise. None of my other blood results are abnormal apart from raised eosinophils on blood film but I was starting with a chest infection when that was taken so it’s being re-checked next week.
Don’t have low Haemoglobin or ferritin. It’s weird isn’t it? Given that athletes transfuse or train at high altitudes because it enhances their performance why does Polycythaemia vera (PV) make you so tired? Is it because the blood is so thick and sluggish? So many questions?!!!
A statin won’t affect my blood pressure ( which is always fine) but potentially having this condition has affected my 10 yr risk score for having a heart attack so that tipped the balance in favour of it being prescribed.
I put myself on aspirin but GP is aware and concurs.

[Erica]

Replying to both your posts @Vera I think you have some great questions for your medical team as unfortunately we are not medically trained, you know more than we do medically!!
Be kind to yourself and please do keep posting.

[Rammie18]

Yes sorry you’re right confused myself about statins as I’m on them myself, they are more to low cholesterol which mine is/was well managed before but guess it comes with the package.

Definitely the fatigue can be regular or quite sporadic which makes doing or planning things a nightmare and so inconsistent. Sometimes it’s a battle that you feel the need to do something may make you feel less fatigued or lethargic when in fact it may makes things worse but doing nothing gives more evidence to being fatigued which then makes it feel more self inflicted. It’s really hard to explain let alone endure

Be sure to keep us updated!

[Vera]

Thank you Erica and Rammie
Yes the fatigue is sporadic. I felt fine yesterday but today, not so much. Got that dull headache again and just want my couch and watch a film.f
Waiting game for me now but i will update when i know more

[Duncan]

Hello there @Vera, just wanted to welcome you to the forum. Like @Rammie18 I also live with Polycythaemia vera (PV) so understand and empathise with much of what you’ve described. You’re not alone with this, whatever it ends up being, but I’m keeping my fingers crossed that it’s not an Myeloproliferative neoplasms (MPN) or other blood cancer

Sounds like you’ve got the ball rolling with the testing and getting to the bottom of your symptoms and I hope that all speeds along without any delays. Just a word of caution as my dad was tested for the JAK2 gene mutation after my Polycythaemia vera (PV) diagnosis, and it unfortunately took the university hospital months to send his results back (thankfully negative).

So I’d say the worst of all this will likely be tolerating anxiety whilst awaiting test results, and I’m sure you know as a nurse how our minds go to the worst possible scenarios! I think you’re wise to occupy your time with distracting activities. It’s great that you’re able to work still, but don’t forget to take time off for yourself if you need some space away from medical environments.

Something that personally helps me offset my fatigue that can come on so quickly is, rather counterintuitively, doing stretching exercise like yoga and hiking. You’re already getting outside which is great. I read a meta-analysis of best ways to minimise cancer-related fatigue (I can share if you’re interested) and it showed slow exercise like yoga, tai chi and Pilates improves energy levels with blood cancers like Polycythaemia vera (PV).

From what my haematologists and phlebotomists have told me, the fatigue is linked to our bodies doing their proliferating thing of making too much blood, which can cause aches and pains when our bones make the bonus blood. Our spleens can start making blood too, and even our collarbones! Lots of body horror for those of us who aren’t medically trained, as I’m sure you can imagine.

Keep us posted about how you get on and you’ll find folks here who know what you’re going through and support is right here once you have diagnostic clarity.

[Vera]

Oh that’s interesting Thank you!
I still do a yoga class but am limited now in some of the moves because of joint pain. I recently started TaiChi and love it.
I don’t work anymore, I’m retired. However im pretty busy. I do pottery and ceramics which is something I’ve longed to get my teeth into for ages but work always stole the time. Last couple of weeks I’ve been obsessed - probs to take my mind off this.

[Duncan]

Ah excellent @Vera, see you’re already doing so much good advocating for yourself and using your expertise in nursing. Sorry for missing that you’d retired. I’m sure your knowledge comes in handy now, with all the medicalised language you’re facing.

All your activities sounds amazing and I can well imagine them helping. I love that you’re a ceramicist, working with clay is meant to be a great way to embody what we’re feeling.

Many folks on the forum talk about how writing it all down can also help a lot, or writing for the act of expression itself at such a stressful time. Keeping some kind of notes of changing and new symptoms can be helpful to haematologists too.

My fingers are crossed for you.

[Erica]

Hi @Vera I am a Pilates girl and a great walker and advocate of fresh air and appropriate exercise.
I like Tai Chi and yoga but do not practice them currently.
As for pottery and ceramics, it sounds wonderful.
I also have a friend that has taken up woodturning and we got a lovely snowman last Christmas and he says an angel is arriving this year.
Enjoy and who cares that you have been obsessed it is a great diversion for you at the moment

[Amanda53]

Hello
I’m Amanda and I’m new to the forum.
I have Multiple Meyloma and I have since April 2022.
I started treatment in the August 2022. Finished chemotherapy in December 2022 and had my stem cell transplant in 2023. This was very tough. I became dairy and lactose intolerant due to the transplant. I had consolidated chemotherapy from April to June 2023 then I was put onto revlimid.

[Erica]

I have read your other post, but thanks for introducing yourself here @Amanda53.
It must have been tough becoming dairy and lactose intolerant for you
i am so glad that you have found us and I hope that you will find our forum as supportive as I do
Please do keep posting and really looking after yourself, you have been through a lot.

[AMLucy]

Hello, I’m new here. I was diagnosed with Acute myeloid leukaemia (AML) (NPM1 + DNMT3A mutations) in June this year and have had my induction round and first consolidation round of chemotherapy.

Initially my doctor was hopeful that chemotherapy would be enough, but recently she has been dropping heavy hints that a stem cell transplant would offer me the best chance of a cure. I find out tomorrow what her recommendation will be. If it is transplant, hopefully she has an update on the donor search. Then I will either go straight into preparations for the stem cell transplant, or if there are delays, then I will start the second consolidation round of chemo week after next.

[Erica]

Hi @AMLucy a great big welcome it sounds as if you have had a lot going on since June so I am so glad that you have found us.
You say that you have an appointment tomorrow to find out what the recommendations for your treatment are perhaps you might consider writing down all your fears, questions and practicalities.
I always need time to consider things before making a decision.
Please do let us know how you get on and I look forward to hearing more about you soon and be very kind to yourself

[AMLucy]

Thank you. By now I think my doctor knows to expect a long list of questions from me though I’m distilling them to fewer questions now:

1. What exactly about my response to treatment or biopsy results have changed your mind from recommending 3-4 chemo consolidation rounds to now recommending a stem cell transplant?

2. What is the risk of relapse if I go into a stem cell transplant being MRD+? Would it be worth trying to get to MRD- first before Stem cell transplant?

3. Studies like Ivey et al 2016 compare outcomes of MRD+ vs MRD-. Are these with or without Stem cell transplant?

4. How does my risk of relapse or overall survival after stem cell transplant compare to if I’d responded better/as you’d initially hoped to chemotherapy and could’ve continued only with consolidation rounds of chemo.

5. What I can do proactively to reduce chance of graft failure or Graft-versus-host-disease or relapse (besides following treatment recommendations).

6. Am I screwed if I relapse or the transplant doesn’t graft? If either of those happen, what would be the next treatment option/step?

7. Please can I request a bed in a particular ward/pod that I’m already familiar with?

If anyone has suggestions for more topics/questions, please tell me them! By now I’m fairly familiar with the transplant process and all the rules of living to follow afterwards to prevent infection. I’ll have tons more questions on how to reintegrate into life afterwards. But those probably aren’t for a medical doctor.

[Erica]

Go for it @AMLucy be pleasantly assertive and do ask for clarification if you need to!!

[Nichola75]

You sound very prepared with your questions. The more you ask the better.Please keep us updated following your appointment