Hi I really don’t know what to say other than that I am just diagnosed with PV and yesterday had first venesection. I am absolutely terrified and trying my best not to worry but it’s in my head every waking moment. I am a 63 year old woman and I am finding it difficult to take it all in and what it means. I used to love walking and have stopped this recently but have made myself get out as all I am doing is sitting indoors worrying. Does anyone have any tips to help me get my head around this and what it means. I hear the haematologist and read the literature they gave me but I am still really scared, like I’m waiting on something terrible to happen. I am sorry if this post appears to be burdening as I know there are other people in the same boat. Any tips would be gratefully received. Thank you
Newly Diagnosed PV: Hi I really don’t know what to... - MPN Voice
Newly Diagnosed PV
Hello and welcome to the forum. You have found the right place to be. You will find good information from a patient perspective and a lot of support here.
I was diagnosed with ET about 30 years ago. It progressed to PV about 8 years ago. I have lead a rich life and continue to do so at age 66. There are things to learn about managing a MPN successfully. Start with knowing that you can manage it. Know that most people with PV will live a near-normal lifespan. It is quite common for people with PV to have more issues with the secondary symptoms that affect our quality of life than with the big risk factors like thrombosis. That has certainly been the case for me.
Here is a recent post where we we having a discussion about how to cope with a MPN.
healthunlocked.com/mpnvoice...
One of the most important things at this stage is to consult with a MPN Specialist. Most hematologists do not have the KSAs to provide optimal MPN care. Here is a list just in case you are not already seeing a MPN Specialist.
Most docs would recommend cytoreductive therapy in addition to venesection for someone over age 60 with PV. Not all docs agree, but this is the standard protocol. If this is the recommendation for you, there are two primary treatment options: hydroxycarbamide (hydroxyurea - HU) or one of the PEGylated interferons (Besremi, Pegasys). There is also Jakavi as a second-line option. It is very important to review each of your choices if you need cytoreduction. Be sure to understand the risks/benefits of each of your choices. It is your right to determine which treatment option (including venection-only) is in your best interests.
We each have a unique MPN profile and need individualized care. We each respond differently to each of the treatment options. We each have our own treatment goals, risk tolerance, and preferences. This is the basis on which we each make our treatment decisions in collaboration with our care team.
Knowledge is power. Feeling empowered is helpful in dealing with medical conditions. When you are ready, there is excellent information available about managing PV. Here are a few links to get you started. There is a lot more good information available.
powerfulpatients.org/help-b...
mpninfo.org/conferences/202...
legeforeningen.no/contentas...
All the best to you as you start this journey.
Thank you for your response and invaluable links much appreciated Hunter, just a lot to try and get my head around. I have a meeting with consultant next Thursday who my haematologist confirmed will go through things with me and indicated that I would be put on Hydroxycarbamide due to age and I suppose symptoms etc.
Thank you
I hope the consultant you are going to see is a MPN Specialist. Be sure to confirm this as it makes a big difference in the quality of your care.
Regarding the choice of medication for cytoreduction, hydroxycarbamide is only one of the two first-line treatment options. Many healthcare systems prefer it because it is so much cheaper. Unfortunately, some systems use age as a criteria in determining which medication gets preference. That is not to say that it should not be one of your considerations, just that it is only one of several choices you can make. Please be sure to thoroughly review each of your choices with a MPN Specialist.
Here are a few more sources of information you may consider. There is a lot more information available.
news.cancerconnect.com/myel...
About HU
drugs.com/monograph/hydroxy...
About PEG
There are certainly more good sources of information about these treatment options. Please do not rely solely on these links. Also know that while reading about the potential adverse effects of the treatment options can be rather daunting - just because something can happen does not mean that it will. many of us use these medications very successfully. I have been using PEG since May 2021 very successfully. It is managing the PV (erythrocytosis/thrombocytosis) very successfully with no significant adverse effects. I am very pleased with how I have responded to my treatment with PEG.
I wish you the same success with whatever treatment option you choose.
Thanks Hunter , I will take your advice on board and be sure one if the first things I will ask is if they are an MPN specialist.
I am pleased however that I have an answer to what is wrong with me and I am on someone’s radar. Since October I have been undergoing tests via GP and at the start my bloods were fine. Not until the third set did our out of hours NHS flag the issue and that more tests were required and referral to haematologist. So slight increase in Hg each time since December.
Thanks again for your much appreciated response.
My wife (61) was diagnosed with PV 5 weeks ago. She's had three venesections and on Tuesday this week started on Hydroxyurea. Like you she was in the first weeks petrified, depressed, tearful and constantly scouring the internet.
The thing that is helping us both is listening to the experts, in particular finding a haematology consultant we trust and talking openly with the haematology practice nurses. I know the NHS is stressed but there are loads of good people out there.
Your fears are real, but in practice PV can be managed and you can have a valid and fulfilling life.
You'll have ups and downs...but don't dwell...try to live in the moment, give yourself little treats and accept any help you can. But, talk...with other PV sufferers, friends, family or volunteers. Don't bottle it up.
It's not easy in these first weeks but I'm sure you can find your new normal.
It's surprising what little victories do....once your venesections get your haematocrit down to .45 or whatever has been proposed you will start on chemical therapy....so no frequent visits to hospital. We've just found out my wife can have her regular weekly monitoring blood test done at our local walk in hub.... no appointments needed...so much easier to fit in with routines.
MPN Voice is a great forum....mpnvoice.org.uk/
Take each day at a time, treat yourself occasionally, eat well, try to keep exercised ( walking is great ( when our weather improves) and remember you are not alone.
Plan loosely, but live in the now.
We're all learning together.
Sending our best wishes 🤗
Hi, in 2005 I was the same as you are now. Newly diognosed, couple of venesections in and very scared. It's understandable to feel like this. It seems to be a terrible diagnosis and I felt woe is me.But you will get over this as we all have. Hunter has provided all the info and links to calm your head down. This in turn will lessen your worries.
This is one of the better blood issues to get. It can be well controlled so complications rarely arise.
I choose to think of PV like this. My bone marrow makes too many red blood cells and I am on medication to correct this. This what I tell others but I rarely tell anyone. Even my family seem only vaguely aware. They couldn't understand why I was on vulnerable list during Covid. This thinking has been the saving grace for me. In time I hope you can think like this. It puts it into the background and you can get on with life as before.
I have had issues especially with interferon which I am on for 15 years. But the bone marrow production is controlled, no venesections and overall all is well.
So knowledge is power in this and I hope you can reach a state of calm acceptance with the help of the good people on this site.
Mairead
I was diagnosed with PV in 2014, when I was 53, but on diagnosis it was confirmed that I had it since 2009.
I had been constantly feeling ill for a number of years with lots of many strange, hard to explain symptoms - I was mostly dismissed and told I was peri-menopausal. Then I had a stroke in 2012 - I was a non-smoking, healthy eating woman, who wasn't overweight. But still they couldn't tell me why I had suffered a stroke.
In late 2013 I developed a massive blood clot on the top of my hand. It was the size of my hand, so I went to see a NEW GP for diagnosis. She ordered blood tests and within seven days I received an appointment at the haematology Dept and within a few weeks was diagnosed with Jak2+ PV - it was then that it was confirmed that I'd had PV since 2009, and it had caused the stroke.
At the time of diagnosis, I was just relieved that I had been diagnosed with PV! I wasn't even angry at my old GP or the previous hospitals' negligence.
It wasn't until 18 months or so later that the shock of being diagnosed with a chronic illness, and that I had suffered a stroke really hit me - I became depressed, anxious and stressed and basically wasn't 'myself'.
On my daughter's suggestion, I went to see my GP about it, and she booked me in for a course of Psychotherapy, and it was amazing - the change in my 'doom and gloom' thoughts didn't happen overnight, but within weeks I started to feel like I was my 'old self' again - my Psychotherapist taught me mindfulness and other meditation techniques which I still use to this day.
Being diagnosed with a chronic illness, especially one which isn't well known, is daunting to say the least, so I would definitely recommend seeking the help of a Psychotherapist/Counsellor. It really does help to get your thoughts into perspective and helps you to lead a full, healthy and normal life - like I do to this day.
Wishing you well - Kari.
Thank you Kari for the advice ref phsycotherapist this will be on my list of this to discuss when I next visit my doctor. You have given me immense comfort from your experience.
What an amazing bunch of people on this forum I am so glad I took my haematologist advice to ditch the internet and contact this group I do not feel I am on my own now, thank you.
Hi I was exactly the same as you scared and petrified crying anxiety through the roof once I knew what i was dealing with i settled down believe me i could worry for England I'm 67 started HU a few months ago better on it than not yes I was scared to take it but I've been fine I'm ET/PV.. This is a fantastic site to be on so much caring and knowledge from great people.. Best wishes to you ❤️
Hello, it is scary when you hear the words 'rare blood cancer', it makes you feel very isolated but on this forum you are able to chat with others like you and you will soon realize that you can pretty much live your life normally.I was diagnosed with PV 6 years ago at the age of 55. To be honest, I think the weekly venisections were the worst😬
Try to carry on as normal along with taking covid precautions. Right down any questions or concerns you have for your haemotologist appointment
Good luck and remember we're here
What you are describing - the sense of overwhelming, head spinning, surreal disbelief, confusion and anxiety - will be familiar to just about everyone on this Forum in one form or another. The time around diagnosis can be completely disorientating. It’s also a time that is often overloaded with tests and hospital visits. Believe us, this disorientating ‘noise’ really does quieten, often to barely a whisper.
There are lots of sensible pointers in this thread to where to look for reliable information. The really important thing to remember is that the understanding, management and treatment options for MPNs has moved on exponentially in the past decade or so and continues to do so. There is much on Dr Google that is out of date and inappropriately alarmist.
Having PV is eminently manageable. It’s cancer with a very small ‘c’. With blood counts under control and the care of an MPN specialist you just get on with your life. Wishing you all the best.
Your post is definitely not a burden!Welcome this is my life line. I have ET it took me years to accept and adjust to my condition. There will be others with PV on this site who can give you valuable hints.
hello Hocus58, and welcome to our forum, I hope that reading the replies from the lovely community members is helping you, we all do understand how you are feeling, it is very scary when you are newly diagnosed, but now you have found us hopefully you will feel less scared.
Take your time to read the information on the various links you have been given, it will all make more sense and you will be able to take more control of your PV and start enjoying your walks once again.
take care and best wishes, Maz
Hey Hocus,
You’ve come to the right place and good for you for posting your message. It’s definitely not a burden and, if anything, responding to you will lighten my own load!
I too have been recently diagnosed, and the shock and fear was debilitating at first. Whilst I was lucky enough to have people who cared for me giving support, what I missed was people who understood through their own experiences. That is what you have found here!
My only advice is to keep doing what you love. Exercise outdoors brings so many benefits, mental and physical, and one thing you can do to help yourself is to keep moving.
Here in Somerset it’s trying to be sunny… a good day for a walk..!
Take care.
Thank you Huginn for someone only recently diagnosed I am so glad that you took the time to respond. It did inspire me to go out in the cold Scottish sunshine for a walk and blow away the cobwebs.
What a lovely group this is I’m glad I took my haematologist advice and avoided the internet and contacted this group. Thank you
Others have probably said it all. Such a lovely, helpful group here. 2 tips, drink plenty of water to keep hydrated and gentle exercise is good. Let us know how you get on
Thank you Hopetohelp for the response it is much appreciated. I went for a lovely walk in the albeit cold Scottish sunshine and throughly enjoyed it, thank you.
Hi I agree with everything previously said. I was diagnosed nearly 4 years ago at 54. Such a shock as never even heard of PV! It does get better when you get used to the idea. Also, if you have critical illness insurance you should be covered! And this forum is a godsend, as when you look well it's difficult to explain to friends/colleagues you don't feel great! Best wishes
Sorry to hear you have joined the PV club, it’s normal to be scared initially. For certain you will get used to it with time. It’s a bit overwhelming initially but eventually it will just be a annoyance in your life as opposed to overwhelming. Most of us live pretty normal lives with it. Knowledge is the key so wise to read this forum daily and as questions if need be. Don’t worry if you don’t understand it all right away, that’s normal especially if you are currently feeling panic, try to keep calm and read it daily and it will become clearer as times goes on.A good doc is important but if your doc is not meeting your expectations dont panic ,most of has have had various docs and changed meds a few times.And now for the good news, you’ve just been diagnosed as opposed to some on here who are further on in the disease. With PV many live near normal lives for many decades, I know quite a few who have passed 30 years and doing well. Also the meds and treatments are better these days and there is very likely better treatments in the pipeline. So there are quite a few positives. Looking back over the last 12 years with PV THE BIGGEST REGRET I HAVE IS ALL THE TIME I SPENT WORRYING UNNECESSARILY. It achieved absolutely nothing except wasting valuable time.
It’s natural to be anxious at this stage, try to look after yourself with good exercise, healthy eating rest etc and the rest will likely fall in to place. If in doubt ask questions here. 😀
Thank you Ainslie for the advice. What a lovely group this is I’m glad I took my haematologist advice and avoided the internet and contacted this group.
After reading some of the replies I received it inspired me to have a walk in the cold Scottish sunshine today 😊 a first for ages and I throughly enjoyed it, thanks
Hi, Not burdening at all! You have got good leads here for reading about PV. Just to say, I was diagnosed with PV Jak 2 at 65 and like you started with a couple of venesections before starting hydroxycarbomide and asprin which I have been taking for 6 years now, without problem. It took about a year to get the hydroxy dose about right to bring down my platelets and red cells, without bringing them, or others too low. My dose still has to be tweaked from time to time, which is done with 3 monthly checks, I make sure I have a good diet, plenty of exercise and water. Good luck - I'm sure you will find this forum useful.
Hi & welcome, I was diagnosed last yr & I'm a couple of yrs younger & I recall feeling like that. I started venesections immediately, 500ml every 2wks, along with Hydroxycarbamide. I was warned it would be a tough few months until they got my levels down & it was, I felt exhausted all the time. After 8 venesections my levels were down & after 5mths I started to feel more 'normal'. This wks blood test shows my levels have raised from 45 to 47 & I had a choice, restart venesections to bring levels down or increase Hydroxycarbamide. I elected to restart the blood drawn downs, probably only need a few.From my limited experience it does get better, I don't mean the illness goes away I mean how you'll cope with it, hopefully soon it won't be on your mind every minute & you'll get back to doing the things you love once your energy levels pick up. The best thing you can do is don't stress, restart those walks & eat healthy, if youre overweight, smoke or drink think about altering the lifestyle as that will have a positive impact.
The Hydroxycarbamide can sometimes make you feel a little nausea, I find taking the tablets at night work better a) your metabolism slows down at night b) you wont feel nausea when your asleep.
Oh another tip, you'll need a blood test a few days before your venesection so they can keep an eye in your levels, I'd suggest having blood withdrawn from alter arms, it will help to prevent the vein from becoming painful.
Remember sitting on the sofa & worrying is the worst thing you can do, you've got a good many years in you yet, I now someone who had pv & lived to be 85yrs, pretty good I'd say.
Remember you can live a long & full life with pv & staying as healthy as you can will be an added benefit. Good luck xx
Hey Edgewalk thank you for the response the valuable information is much appreciated. I have had such great feedback from this forum/group. I am so pleased I took my haematologist advice and ditched Dr Google for his recommendation to get in touch only with this group.
I have taken great comfort in the comments from everyone on here and to know that I am not alone in some of the things I have been feeling is a relief.
I made myself get out for a walk today in the cold but lovely Scottish sunshine and felt better, headache and aches went. Until the next time ………
Thank you ☺️
Hello Hocus, I'm very glad you were told of MPNVoice and this website. Both are extremely useful. I don't think they were around when I was diagnosed with PV in 1983, aged 37. I had lots of venesection to start with, and went on to hydroxycarbamide, in various doses from that year.
I am still alive and doing very well and will be 76 this year.
Best wishes with your long life ahead and please try not to worry. Your symptoms will fade away and you will start to feel much more like your 'old' self once the bloods are in control.
Hi Michael thank you for taking the time to reply it is much appreciated. I am so glad I took my haematologist advice from the outset and contacted MPNVoice and found this network of amazing people.
Wow your story has lifted my spirits this morning thank you for sharing. Makes me realise how lucky I am to have found this group, something that was not around when you were diagnosed.
I am off to hospital this afternoon for second venesection and have meeting with consultant Thursday to discuss medication. Haematologist has given me the pamphlet for hydroxycarbamide so assuming this will be under discussion.
Many thanks for your words of support and sharing best wishes.
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