New diagnosis Polycythemia Vera

Hi My name Is Elizabeth. I live in Ireland and was diagnosed on tuesday with Polycythemia Vera. I hope its ok that I post here. I also have severe asthma and underactive thyroid. I started on daily hydroxycarbamide and allopurinol yesterday. Its all a bit sureal at the moment. I guess i just want to connect with others going through the same or similar. A quick question my children are finding it a lot harder to come to term with the diagnosis than I am. I have given them a copy of the Blood cancer Uk booklet on Polycythemia vera which I was given at the hospital. My children are adults ranging from 22 to 33. It is hard constantly reassuring them that I am ok and seeing them so upset.

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Hi @Liz59 a great big welcome you are definitely posting in the right place
There are a lot of posts from others with Polycythaemia vera (PV) on here.
I will just copy a recent one for you
Polycythemia - Recent diagnosis - Blood Cancer UK Online Community Forum
You say that you were only diagnosed on Tuesday and your question about your children coming to terms with your diagnosis.
I have another blood condition but personally I would say just give them time.
Perhaps you all need time to come to terms with your diagnosis.
I would find it hard trying to support my children when I am in shock too.
I think especially children need time as they have never thought about the mum they love being vulnerable before.
Please do keep posting how you are and I really look forward to hearing more about you.
If you would like to speak to someone the Blood Cancer UK support line is there for you (opening hours apply) on 0808 2080 888
Be very kind to yourselves it’s early days for you all, especially you.

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Dear @Liz59
Thank you for posting and we hope that you find this a supportive space.
I can see that @Erica has already sent you a wonderful response and included the Support Services phone number, we are here for you when you are ready.
I am really glad that you have the Polycythaemia vera (PV) booklet, if you should need any more information please do let us know, for now I wanted to forward you our webpages on I’ve just been told I have blood cancer | Blood Cancer UK and do request this booklet if you feel it would be helpful https://cdn.shopify.com/s/files/1/0196/7004/0676/files/Your-blood-cancer-diagnosis-Blood-Cancer-UK-ND-0821.pdf?v=1631108998
We also have a newly diagnosed email journey Sign up for blood cancer support by email | Blood Cancer UK
Take care
Gemma

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Welcome to the forum! I have been on both sides if Blood Cancer - both as a carer and patient. I was diagnosed with Non Hodgkins Lymphoma 13 years ago and 5 years later my (then) 19 year old daughter was diagnosed with Hodgkins Lymphoma. Fast forward another three years and my Mum was also diagnosed with Lymphoma. I think it is a very different journey as a patient compared to being a carer. For me when I was diagnosed I just got on with it and felt like I dealt with everything ok. However, as a relative (Mum and then Daughter) of someone going through a diagnosis for me it was alot harder. All I wanted to do was protect them both and do my best to sort out practical things and try and minimise any of their worries.
Would your children be comfortable with posting on this forum? Or even just reading other peoples posts can help also? Below is a link to some practical and emotional support for anyone who has a friend or family member who has been diagnosed with blood cancer and this may help your children.
My friend or family member has blood cancer | Blood Cancer UK.
It will take a bit of time for your children to get their heads around what their Mum is going through and they will just want to be there for you.
Please keep in touch with the forum and please look after yourself.

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Hi @Liz59

I was diagnosed with Polycythaemia vera (PV) in August 2020 aged 38 and after years of monitoring and taking interferon, I’ve recently moved onto Hydroxycarbamide.

I’d be more than happy to answer any questions or ease any concerns you may have.

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Thank you Erica, Gemma, Joanne and Rammie, for your thoughtful replies. I understand with time it will become the new normal. Just having the support here is invaluable. I will definitely look up the links for both myself and children. I have a question is there any food I should be eating or avoiding. Is a normal diet ok?

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@Liz59 i think it’s normal to hear the word cancer and to be instantly worried and panic.

Sometimes this can make turn positive and stronger to prove their concerns and worries were wrong but can also make you worse.

Becoming knowledgeable and understanding of the condition takes time along with you and your medical team to find a way to best test and treat you.

In time, you and your children will see first hand what the condition is and how it will affect you going forward. As disastrous as it may seem having a label/reason/explanation behind how you’ve been feeling can bring solace and kick start you into and everyone around you to start working to prevent it from effecting your life and what you enjoy.

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@Liz59 well according to the guides, all the food that actually tastes good and make life worth living, especially anything that has large amounts of iron, high fat content (Christmas cheese board with a health warning on it), red wine, you get the point.
The hard part will be the hydration part, best part of 2lts a day, my clinical nurse said red wine and beer does not count, but is an extra…great reward system :wink:
As many who have this rare cancer will tell you, it is about exercise and balance, walk another 500 yards then the stilton on the slice of the Melton Mowbray pork pie is worth the effort.
Learn to be kind to yourself is the first lesson.
Oh and remember, you are just another living creature carrying the genetic random gene donated by the earliest living creatures, including the dinosaurs :wink:

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Rammie and clickinhistory thank you for responding. I agree understanding and acceptance will come with time. It’s great to hear that my diet will not be limited especially this time of year. I already exercise by walking a lot. I walk to work everyday and sometimes home. I do an average 10,000 to 18,000 steps a day. I drink lots of tea my kids say I am addicted. As for water I am now up to approx 1 litre a day. I found bringing a water bottle to work and sipping during the day helps. Also I keep a glass of water beside the kettle so every time I put it on I have a few sips. I am going to the day ward next week for my first venesection. I feel ok and positive . I was wondering do people wear face masks in crowded situations?

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Hi @Liz59 I am impressed by your healthy routine which is what I basically try and follow, apart from the the fact I am not a cuppa girl, I am just not keen on tea, and happy to drink water.
Yes, I wear a mask in crowded situations and medical settings and actually have just put my mask out and paperwork as I have a blood test this morning and a hospital appointment this afternoon, it’s all go isn’t it.
Yes, understanding and acceptance will come in it’s own time just be very kind to yourself and keep posting

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Hello there Elizabeth, welcome to the Polycythaemia vera (PV) club! It’s rather exclusive and I imagine none of us actually want to be members. I’m really sorry to read that you’ve been diagnosed, and so recently. I was also diagnosed with Polycythaemia vera (PV) this year and empathise with a lot of what you’ve described.

Sounds like you have a great approach to your diagnosis, but I want to reassure you that you are not alone with it. This forum is so excellent for finding others who truly know what you’re living with, although of course your own experiences will be unique to you.

Also sounds like exercise is already important to you and I’d say try to keep it going but let yourself have breaks when you’re just not feeling up for it. You might find that venesection tires you out so perhaps try not to overdo it leading up to and after those appointments. Slower exercise like yoga, tai chi and qigong are shown to be particularly helpful for improving energy levels with cancers such as ours, and I know our guiding light @Erica is partial to Pilates.

You already drink lots of water but I’ve found drinking even more water the day before and prior to venesection has helped the process pass more quickly—the more hydrated we are, the easier our blood flows around our veins, and thus the easier it drains during phlebotomy. The one time I was dehydrated caused my blood to be “thick like molasses” as my nurse told me, and it took ages to drain, like 1.5 hours as opposed to 15-20 minutes.

As for masking up during appointments, I think why not? It’ll give you and those around you an added layer of protection. Bear in mind that your immune system will be weakened by the Polycythaemia vera (PV) and its chemotherapy treatments. I always wear a mask during any medical appointment. I mean, think of all the lurgies that are present in medical settings from the other ill people attending. I’ve managed to get through the pandemic without ever catching COVID-19 and all I did was wear a mask around others in confined spaces and wash my hands, although of course that’s just my experience.

Unsure how to advise you in regards your family needing reassurance. As adults perhaps they could have a look at the literature that cancer organisations like this one produce? I’d steer clear of randomly googling stuff though as there’s a lot of nonsense out there about our prognoses and how long we can survive. Focus instead on official blood cancer charities and organisations like this one for up to date information.

Don’t forget to make sure you have people around to reassure you! You might find you have nurses or other specialists who support you, or it could be a close friend, but make sure to find space for you to work through your feelings about it all. You might find once the hydroxyurea kicks in that you start noticing more fatigue. This is sadly a very common side effect of cancer and treatment, something like 85 % of us get cancer-related fatigue. For me at least the fatigue faded as treatment brought my haematocrit level down into the normal range, so I hope you find the same.

I’ve noted that some of us here are recommended to avoid iron supplements as it can affect our blood production, and Polycythaemia vera (PV) is a disorder of blood proliferation. Others find they become anaemic due to iron being removed via blood during phlebotomy. Despite me being vegan and not eating many iron-rich foods as it is, my haematologist said not to add extra iron into my diet via a supplement. I don’t seem to have had any anaemia issues, but I know others here swear by the occasional iron IV, and perhaps it varies for those who menstruate. Check with your specialists for your specific dietary needs.

Keep posting, @Liz59, we’re here for you!

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Erica and Duuncan thank you for responding. I can’t express how much the support means to me. I walk a lot as it is good for my asthma, I am lucky that my asthma is not exercise induced. It is good to know to watch out for fatigue around the venesection. Due to fatigue I went from working five days down to four as my job is quite physical. That was back in October before I got diagnosed. I went to see the Royal Ballet perform The Nutcracker live in the cinema that was such a treat this week. I still haven’t figured out who I can talk to as everyone is finding it difficult to process. Part of this is that Polycythemia is not well known and Cancer brings up emotions and memories for many. I have the number for a cancer nurse if I need to talk. I feel once it becomes more normal and accepted there are a couple of friends I will be able to talk to if I need to. At the moment it’s all about reassuring everyone that it’s ok. I have a busy weekend with the work christmas party tomorrow and on Sunday I am going to a concert to hear Vladimirs Vieneese Christmas. Lots to look forward to.

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Oh you’ve got a fun time ahead of you! Enjoy it all and let it distract you, I say! I love how you’re not letting the diagnosis stop you from socialising.

I’m really glad you have friends you’ll be able to confide in, and if I may be so bold I think you’re right to think of the Polycythaemia vera (PV) as something that will come to feel more normal. Never thought I’d feel it myself just a few months since diagnosis but it becomes more like noise in the background rather than a constant deafening intrusion!

As for this disorder being so unknown, it may come to seem like an “invisible” condition and almost as if others don’t realise its potential risks, which can be both a relief as it’s not always at the forefront of interactions, but also kind of frustrating when its severity is taken for granted because we don’t necessarily look ill. Polycythaemia vera (PV) is a weird rare disorder which isn’t well understood medically so I live in hope that advances in treatment will occur in our lifetimes.

Enjoy your festivities, Elizabeth :partying_face:

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Hi @Liz59 and @Duncan yes, I think distractions really help and I appreciate everything I choose to do now
Our Specialist Nurses are a good resource and there to be used.
So is the Blood Cancer UK support line (opening hours apply) 0808 2080 888
And we are about the bank holidays.
It is hard work trying to make everyone else fell better and OK
Yes, invisible conditions are so difficult, people say ‘Oh, you do look well’ and actually I am feeling fatigued and rough. No one can imagine what others feel and think inside.
Take your time @Liz59, you are doing brilliantly.
Be happy and healthy both of you

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Erica and Duncan hope all good with you. I hope your hospital visit went well Erica. I missed the work party as wasn’t great on Saturday. Just one of those fatigue days and could not get warm . So slept most of the day and night and all good on Sunday. Had a great time at the christmas concert. I was with my mum who will be 91 in a few weeks and some other family members. Wishing everyone a Very Happy Christmas and that 2024 is filled with Joy.

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Sorry you missed your work party on Saturday @Liz59, but your Christmas concert sounds wonderful with your mum and other family members.
I went to our Estate Carols on Saturday, not a lot of singing along, but overdosed on mince pies and baby Colin the Caterpillar cakes.
Yes, Joy sounds good to me for us all in 2024.

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A few questions, if thats ok. I think I am having reactions to the hydroxycarbamide. I now have a few mouth ulcers. Also sore muscles. It was hard walking to work today and also lower back pain. I will ask at the day ward on Friday. I was just wondering does / did anyone have these reactions and what they found helped? Erica Christmas Carols with mince pies and Colin the Caterpillar cakes sounds fantastic. I am partial to a mince pie myself.

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Oh @Liz59, I’m really sorry to hear of those reactions. Mouth ulcers and aches and pains are common side effects of hydroxyurea, unfortunately. I’ve not had ulcers but I was really knocked out by fatigue and all sorts of aching for a few weeks after starting chemotherapy while my haematocrit level came down to its normal range. One of my phlebotomy nurses explained the aches being due to my body reacting and getting used to the chemotherapy and how it affected my blood production.

Most of our blood is made in our pelvic bone marrow, hence why the bone marrow biopsies are taken from there, and my personal theory is that’s why we can get lower back pain after starting treatment. Although of course we all respond differently to our treatments, my fatigue reduced over time while my hydroxyurea has not, so I guess my body got used to the medicine.

I would say, try to go with the fatigue and aches for now and keep notes about when they’re less noticeable and what seems to offset them. Perhaps for now rest more while your body acclimatises to the new medicine and how it’s disrupting the blood production going on. Resting helped me feel less wretched during the worst of the fatigue I experienced. However, make sure to contact your doctor/care team if the fatigue is disabling you as it might mean the hydroxyurea dose is too strong/too often, and they can adjust it accordingly.

And I’d add, don’t take for granted how emotional stress can also exhaust us, especially when our bodies are already undergoing physical stress from a blood disorder and new medicine. Try to take it easy in this early stage while you settle into the changes going on. I hope those nasty reactions calm down for you, @Liz59.

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Hi @Liz59 you have had a really balanced comprehensive reply by @Duncan which I cannot really follow apart from to say I always keep my medical team aware of any symptoms I have, their severity and impact on my life, so they are aware and might be able to help in some way.
Yes, be very kind to yourself and a nap is often beneficial to me too.

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Duncan and Erica, your kindness jumps out. Thank you for your understanding. My daughter will drive and collect me from work for the next few days, that will help. It’s good to know the side effects ease as the body adapts.

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