Just diagnosed with Polycythemia Vera

[Aaron]

Hi All!

I was diagnosed with Polycythemia Vera in August. I am a Canadian living in Hong Kong but came across this forum when looking for others dealing with Polycythaemia vera (PV). Seemed like such a supportive community of people who would understand what I was going through, so thought I’d say hi!

My diagnosis was a complete shock to me being quite healthy and fairly young…37! I had been suffering from pretty bad headaches for a few weeks but didn’t think anything too much of it. Migraines have been in my life for the past few years so just thought it was stress or work. I decided to get it checked out at the hospital and ended up having an MRI. The doctor called me in the next day and told me that I had a blood clot in my brain. The doctor and I were both shocked. I was immediately admitted to the hospital to deal with the clot and to figure out what was causing it. After many rounds of blood tests, the Haematologist came in to discuss results and this is when I found out my HCT and RBC numbers were super high. As soon as he mentioned this, I was pretty sure I knew what was going on as my mum was diagnosed with Polycythaemia vera (PV) 11 years ago. I never suspected that I would also be going through this.

It’s been a wild couple months filled with many appointments, taking heavy blood thinners to get rid of the clot, and frequent phlebotomies. My HCT has come down significantly and almost within normal range. Current treatment is regular phlebotomies and blood thinners as long as the counts continue in the right direction. I have gone from weekly phlebotomies to now every six weeks. Feels like a bit of a breath of fresh air not having to go back to the hospital every week.

Through all of this, I’m dealing with quite a bit of fatigue and brain fog which has made working somewhat difficult. I used to be a very busy person and always loved to be on the go so it has been difficult to slow down but just don’t have the energy right now that I used to. Running long distance and trail running was how I used to deal with stress but the doctor has asked me to take a break from it until the blood clot fully clears. Hopefully that’s within the next month or two as it really does bring me joy!

Feel blessed to have a supportive family, two young kids who bring lots of laughter and joy amidst this, and a mum I can talk to who understands what I’m going through.

Anyways, look forward to getting to know more of you as we go on this journey together!

[Erica]

Hi @Aaron great that you have found us, welcome, but just to say the obvious this is a UK community forum and tests, treatments and medications might be different here for many reasons.
What hopefully you might find is that many of us might share similar thoughts, feelings and practicalities, a bit like you do with your mum.
Yes, a supportive family is a real bonus and young children are a full time role and a great diversion.
Perhaps keep talking to your medical team, tell them about your symptoms, also perhaps talk to them about your joy of running and follow their advice.
Be very kind to yourselves and look after yourselves and do keep posting

[Emma_BloodCancerUK]

Hi @Aaron,

Thank you so much for your post & sharing your story.
You are so welcome to our forum.

We are so sorry to hear about your diagnosis and what you have been through. This must have been such a scary time for you, but I am glad to hear that things are going in the right direction and that you have a lovely family around you for support.

It is a lot to go through and may take a while to get back to feeling ’ back to normal’, but try not to put pressure on yourself to get back to these things such as running, be kind to yourself & hopefully it will come in time.

We have a page that may be useful Living well with blood cancer | Blood Cancer UK this includes links to our pages on eating well, staying active, your mind and emotions and fatigue which may be helpful to read through.

Please know that you can always call us on our support line on 0808 2080 888 too if you would ever like to talk things through or if you need further help. You can also email us at support@bloodcancer.org.uk.

Take care & warm wishes,
Emma (Support Services Nurse)

[Duncan]

Hello there @Aaron, welcome to the forum. I’m so sorry to read of that terrifying clot and migraines and subsequent Polycythaemia vera (PV) diagnosis, what a lot of stress it sounds like you’ve been under. Thank goodness you’re having treatment to shrink the clot, and you’re here to tell the tale!

I’m really glad you found the forum, although I’d never wish a diagnosis like Polycythaemia vera (PV) on anyone! Perhaps, like you say, having your mum before you diagnosed with this might be a comfort, but the forum is here for whatever you might need to share or ask.

I was diagnosed with “high risk” Polycythaemia vera (PV) last year, but unlike you I hadn’t experienced any obvious symptoms. Well, apart from a heart attack many years ago, hence the high risk now. I still feel survivor’s guilt for having a relatively easy time of it with my diagnosis compared to many others.

What I’ve noticed from others on the forum living with Myeloproliferative neoplasms (MPN) like Polycythaemia vera (PV) and Essential thrombocythemia (ET) is that we all have such different routes to finding we have these blood cancers but that treatments do seem pretty similar, even beyond the UK. I’m outside the UK as well but it feels comforting for me to seek advice here where folks are genuinely lovely and supportive. I hope you come to find that too.

So much of what you describe is familiar to me, especially preferring fewer hospital visits for phlebotomy! I had to go in fortnightly initially for bloodlettings but now my haematocrit is usually within the normal range. I still get nervous on blood test days though in case they show some drama going on with my blood, but usually it’s fine.

As for the brain fog and fatigue, I’m sure you know they’re super common side effects of Myeloproliferative neoplasms (MPN). Doesn’t make it any easier knowing to expect them, or living with them of course. I try to practice noticing when it’s affecting me before I reach that sort of wall of exhaustion.

A wise forum member suggested that when fatigue kicks in to rest from whatever I was doing and then to resume it later. Works for me! After a few months of treatments my fatigue faded a lot and is usually manageable now, so I hope that happens for you too. Here’s the Blood Cancer UK information about Polycythaemia vera (PV) in case you fancied a read: Polycythaemia vera (PV) | Blood Cancer UK

Maybe your mum has some pearls of wisdom to share from her long lived experience of Polycythaemia vera (PV)? That would be my hope—to live well like your mum! Being a “young” survivor myself, with a potential long life ahead, is my motivation. Knowing from my haematologist that we can live with Polycythaemia vera (PV) into normal old age has given me a lot of hope for tolerating this. I hope you find some comfort in that too @Aaron.

Looking forward to hearing more of how you get on!

[Jeremy]

Hi everyone
A quick note about polycythemia vera
I was diagnosed at 35
I am now 58 so 23 years so far still here getting on with my life still very active
If I can help anyone with my experience of polycythemia vera just get in touch
Thanks Jeremy

[Erica]

Hi @Jeremy I have responded to your other post, but I am so glad that you are still very active and getting on with your life.
Look after yourself

[Liz59]

Aaron just wanted to welcome you and hope you find it as supportive as I have. I am glad the phlebotomies and blood thinners are working. Reduced hospital visits are great. Good to hear you have a supportive family . Young children are a great distraction and I am sure give you great joy. It is hard going from being a busy person to having adjust. Hopefully as your numbers settle this will ease. Best wishes. Liz59

[Aaron]

Hey @Duncan!

Thanks for the response and encouragement. Ya, it’s been a bit of stress but like you said, glad I’m here to tell the tale. This forum has been super helpful, especially these first few months. Being able to see that others are going through something similar and hearing their experience has helped a lot.

It’s been interesting as I read more and see that treatments do seem quite similar across the world. With the little information there is, it’s comforting knowing people are doing similar treatments amidst some of the uncertainties. The community here does seem incredibly supportive and genuine. That’s why I ended up connecting here. Nothing like this exists in Hong Kong and I am the only one in the hospital that I go to being treated for this, so was starting to feel lonely. This has been a much needed breath of fresh air.

It’s been 4 weeks since my last treatment and over the last week I have noticed the fatigue and brain fog has definitely let up considerably. It’s a good feeling! Hoping that as the phlebotomies space out more that this becomes more of the norm. Appreciate your advice on dealing with the fatigue.

I do have high hopes for a long life and still have a lot of things left to accomplish so will keep moving forward! My mum has had some good advice and insight…mostly to be kind to myself and take it a day at a time! The rest will slowly figure itself out.

Thanks again for reaching out! Looking forward to connecting more.

[Aaron]

Hi @Emma_BloodCancerUK!

Thank you for this message and the resources you shared. It has definite yet been an unexpected few months but family and friends have been great. As you said, just trying to not feel pressure of getting back to normal right away and taking the time needed to process and recover. Taking it a day at a time!

[Aaron]

Hi @Erica!

Thanks for the welcome! I do understand it is a UK forum and that will be reflected in treatments/ medications etc. Once I was diagnosed, I was looking for a place to connect with others also going through this and could not find anything in Hong Kong. I came across this UK forum and found it to be so supportive and encouraging and found similar aged people going through similar circumstances so decided to join. As you said, looking for a place to share thoughts and feelings and have SO appreciated the support I’ve received so far!

[Erica]

Oh @Aaron firstly I had to laugh that your mum sounded just like me about the importance of ’ to be kind to yourself (as said above) and to take it a day at a time’.
Please do keep posting, yes, many of us seem to share similar thoughts, feelings and practicalities. I find sometimes this is the place that I can share how it really is for me and know that others will understand. It can feel a lonely, isolated place out there.
I look forward to hearing more about you, and as your mum would say be kind to yourself

[Duncan]

Hey there @Aaron, lovely to hear from you.

So pleased to note your optimism and that you’re finding the forum helpful! I know what you mean about how supportive folks can be here. It feels similar for me which is why I keep coming back. Of course, being diagnosed with such a rare blood cancer can feel lonely but so many forum members are living well with Myeloproliferative neoplasms (MPN) like ours, which gives me a lot of hope.

And your mum before us! I wonder if she might benefit from joining the forum? Maybe she already is! I’m surprised there aren’t online places for Hongkongers to discuss health concerns like these, it seemed so futuristic when I briefly visited there. That was years ago though. I haven’t been able to find an equivalent blood cancer or Myeloproliferative neoplasms (MPN) group here in the US either, or even local to me, apart from LLS which doesn’t seem to have so many people using it. We’re lucky to have BCUK and its forum, I reckon!

Really glad that your fatigue and brain fog are letting up. I know only too well how they can really slow things down. If my experience is anything to go by, as my body got used to the hydroxyurea and my fatigue faded I noticed my foggy thinking also lifted. My haematologist wouldn’t say either way whether it’s the chemotherapy or the blood cancer causing the fogginess. However, as a case study of 1, I just didn’t have any Polycythaemia vera (PV) symptoms prior to diagnosis and only developed fatigue and chemo brain after starting hydroxyurea.

You said that you’re into trail running but that you were waiting on the clot to clear. I wonder if you’ve been able to get out into nature anyway, maybe simply for the benefits of that. When my fatigue was too strong for me to do my beloved hiking I’d still try to go strolling outdoors simply for the fresh air. Something else I got into was yoga which I’ve continued. Obviously not as strenuous as your running, but it can feel good to stretch and breathe through the stress of Polycythaemia vera (PV)! Some research about cancer-related fatigue I read showed that doing slow exercise like yoga, tai chi, or Pilates can improve energy levels when living with cancers, but of course pass this by your doctors. It helps me, and I know others here do similar for exercise.

Your mum sounds very wise and loving @Aaron, I’m glad you have each other through this. And yes she reminded me of you too @Erica! Glad you found us, be well!