Just diagnosed with pv : Hi I have just been... - MPN Voice

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Just diagnosed with pv

Dolman profile image

Hi I have just been diagnosed with pv after numerous blood tests over the last month . Still got too have a biopsy in 2 weeks to confirm but my heamo doc says that it looks like pv which is causing my high rbc count and says it’s making my blood too thick . I am very worried after looking on the internet as to what this is as it’s very scary and saying that it reduces your life expectancy a lot . This is the only site I see to get a honest review and makes me feel a bit better . I am 49yr old male with 3 children . Also worried regards a bone marrow biopsy after reviews on the internet . Please accept my apologies if I have already sent this as not sure if I am posting it in the correct place .

Thanks for reading Shaun

36 Replies

Hi Shaun.

I’m sorry to hear of your ‘possible’ PV diagnosis. Do you know if you’re Jak2+? This mutation is generally found in around 97% of Polycythemia Vera patients.

I have ET, so don’t know too much about PV. I’m sure you will have more response from our PV members. However, weekends on the forum are a little quieter.

I have posted a link below to MPN Voice. This is a professional and informative website based in the UK. Have a browse, and stay away from ‘Dr Google.’ A lot of information out there is out of date, and therefore irrelevant. Another good website is Patient Power (USA).

Try not to worry too much. PV can’t be cured but it can be controlled with phlebotomy and or medication if necessary. There are people on this forum who have had PV for decades.

Best Wishes

Mary

mpnvoice.org.uk/

Dolman profile image
Dolman in reply to mhos61

Hi Mary and many thanks for your reply much appreciated

Dolman profile image
Dolman in reply to mhos61

Not sure whether I’m jak2 + yet but would imagine I will find that out when I get my biopsy results . Many thanks for the kind words . Shaun

mhos61 profile image
mhos61 in reply to Dolman

Just to say Shaun, Jak 2 test is usually done through blood testing.

Dolman profile image
Dolman in reply to mhos61

Oh right , well she didn’t tell me , she just said we need bmb now just to confirm pv

tracey13 profile image
tracey13 in reply to Dolman

My husband's jak2 test was a blood test. He had his bloods done at his hematology appointment takes quite a few weeks to come back.

So don't worry too much.

Tracey

Dolman profile image
Dolman in reply to tracey13

Hi Tracey , my bloods have already been done twice and sent to various places and I had to wait 3 weeks for the results . When I went back she just said I need a bmp now as well to confirm so I imagine that’s what she needs to start my treatment I’m unsure

tracey13 profile image
tracey13 in reply to Dolman

My husband had routine bloods done at the gp we knew something was wrong his blood was so thick it was a struggle to get any blood. His arm went navy blue. Within 2 days we got a call to see the doctor they told my husband he has PV it knocked us for 10.

Then they done a further test which showed jak2 positive.

In 2017-2018 his spleen had enlarged to double it's size this lead to the consultant ordering a bone marrow biopsy that revealed he had early stages of myelofibrosis which again another shock to us.

There's people on here had MF for over 20 years so we trying to be positive .

At the time our kids were 14 and 16 years old it was awful for us all.

I researched groups to find more answers out and I found the MPN groups were fantastic. I tend to keep away from Google as medication has come on so much now and they constantly developing new medication.

Stay positive and rest when you need to.

Last year my husband was waking up exhausted and he'd slept all night. That's eased off with the ruxolitanib .

Tracey

Hi

I am convinced that current research will effectively result in new drugs within 5 years that can effectively stop or at least greatly slow progression. Researchers have probably been too focused on inhibiting the JAK2 mutation since its discovery c. 10 years ago.

MPNs are much more complicated than originally thought and research is now testing drugs targeting multiple different aspects of our disease. There are a number of very exciting Phase 1 and Phase 2 Trials in progress.

So please don’t be disheartened. My philosophy is to do everything possible to stay in good health until these drugs are available.

See the thread below re anti inflammatory diet.

Exercise is also important.

And my drug of choice is Pegasys which has worked brilliantly for me. There is increasing clinical evidence that this drug can be, at least temporarily, disease modifying ie slow progression for a subset and even reverse progression for a few.

Also progression rates increase the older you are so you should be low risk at your age.

Just eat well, stay fit, try to avoid unnecessary stress and you should live a long life regardless of new drugs! Many can stay at PV stage for decades.

Best Paul

Dolman profile image
Dolman in reply to Paul123456

Thanks Paul and hopefully you are correct and they may sometime find a cure fingers crossed

Hi Shaun

It doesn't feel right to welcome you to the group as no one chooses to be here but hello. My husband has ET /PV & is nearly 49,been diagnosed 2 years next week. Whilst it's a shocking diagnosis to start with it explains his symptoms & when he was worried he'd got dementia it seems a better outcome as he can have treatment & hopefully have a long life. We are in a positive position that he's not had an thrombotic events so has aspirin daily & venesections (blood lettings) usually every 3 months to keep his HCT (haemocrit) levels below 45% (0.45). He copes with this well & it's keeping all his levels manageable. It doesn't help his symptoms particularly but we do notice a few weeks of improvement immediately after. There is a book by Prof Harrison that's worth buying can't remember what it's called. Write down all your questions for your appointment & note the answers. Biopsy is different for everyone but it's not the nicest experience but worth it in long run so take the pain killers. Good luck and please don't be scared to ask the group questions.

Dolman profile image
Dolman in reply to Chaz1

Many thanks and will definitely be asking more question as I learn a lot more .

Thanks again Shaun

Loubprv profile image
LoubprvVolunteer

Hi Shaun,

My name’s Louise and I’m 65 and live in Cumbria. I was diagnosed with PV 10 years ago and am absolutely fine. I walk 5 miles a day, have just waved off 10 house guests and am catching the train at 1.30 today to go and look after 8month twin grandsons.

Forget the rubbish you read on the t’internet.

You may however, need to change your lifestyle and diet. And no, I’ not some obsessed sandal wearing vegan ( sorry vegans).

I’ll try and be as brief as I can!

First of all it is a shock - and frightening, particularly as you’re so young with a young family.

So, rule number one, it’s qute normal to be shocked and frightened, I cried ( needlessly as it happens ) for nigh on 12months.

Info number one. THIS WILL 90% likely NOT I repeat NOT shorten your life expectancy. I have buddied 36 newly diagnosed ladies who have all felt the same as you, and my buddy has had PV for 30 years.

Info. Read no other website apart from mpnvoice.org.uk

Contact Maz who will set you up with a sensible buddy. Do not become obsessed as many do with scanning the the internet.

Do NOT please, take to heart many of the comments you read on this website. For every person saying they don’t feel well here, there are probably 500 out there getting on with life and feeling tickety boo.

Rule number two, and this is INCREDIBLY important. Find a haematologist who specialises in MPNs . MPNs are myeloproliferative neoplasms of which PV is one. It’s is highly highly unlikely that your PV will progress to anything more, but you must seek the right treatment.

Where do you live? If you want to phone or email me ask Maz for my email, or my number is 079210057552.

You have a right to go to any hospital you wish, anywhere in the country.

I travel an hour and a half to mine at Christie’s in Manchester. Tim is superb.

Your gp will and must refer you if you wish.

I don’t drink alcohol, don’t drink caffeine or decaff stuff, and never touch processed, pre made food - but that’s me.

I drink 2.5to 3 litres of water every 24 hours. Keep you well hydrated.

But that’s me! Your decision.

Walking, briskly, is also important.

You may do all that already!

The forums held all over the uk are excellent and well worth attending.

Any more questions, fire away! Oh, and I take 1000 mgs Hydroxicarbamide a day, suits me fine, touch wood! Don’t be afraid f any of the drugs, should you need them, they work well.

You will be fine. Honestly.

Love

Louise

Dolman profile image
Dolman in reply to Loubprv

Hi Louise and thanks for the detailed reply and will certainly look at everything you said .

I live about 5 miles from derby in the midlands so once I get my biopsy done and results back I will try and find a expert .

Many thanks Shaun x

Mpncoda profile image
Mpncoda in reply to Loubprv

Thank you so much for your inspiring post. My hematologist confirmed that he has living active patients in their 80’s. So that is proof. Some are on HU Is Hydroxicarbamide the same as hydroxyuria? (Sp?). Also, I’ve taken to eating a 1/2-1 full grapefruit per day as I read it can help lower Hemocrit. HCT levels which is critical for me otherwise I face phlebotomy. I’m still “young” in 50’s so my Dr doesn’t want me on HU but I may be facing that drug in a few years according to his PV diagnosis and treatment for me. Right now he said to take Baby Aspirin which I do most days. I have no contraindications for grapefruit - any ideas around this?

Thanks!

Hi, the advice/info from Louise is spot on. I don't know a lot about PV, I have ET, but when I was first diagnosed I'd never heard of it and consulted the internet - big mistake! I thought I would be dead within the week, and if I went on the drugs I would at least glow in the dark if not grow another head. That was around 9 years ago, I have since learned a lot - mainly from this site. It is extremely rare that life expectancy is shortened, you're probably more likely to be struck by lightening!

Make a list of questions for the doctor, and don't worry too much about the Bone Marrow Biopsy, I had no problem with mine, worst bit was hearing the doctor ask for a bigger needle to get through the "padding" on my hip!

Best wishes

Lizzie

Dolman profile image
Dolman in reply to lizzziep

Thanks Lizzie much appreciated x

Hi Shaun, welcome to the MPN family.

Firstly, I don’t know what scary site you have been looking at but people with PV can live a normal lifespan. It is not a death sentence so don’t be so frightened.

You might have discovered that PV is a form of blood cancer. That word alone can frighten the heck out of most people. It was classified as a blood cancer by the WHO in 2008, I believe, because, like a rogue cell multiplies quickly and forms a tumour, your bone marrow is working over time producing too many red blood cells.

I was diagnosed in 2015, right after I had been given the all clear from breast cancer. I was put on Hydroxycarbamide - 1000mg a day and it has done the world of good.

Don’t get me wrong, I am not making light of the disease, you will always probably suffer with chronic tiredness and joint pain but other than that your life will go on as normal and you can be a father to those lovely children and a grandfather to theirs.

Please stop looking at other sites. You can look at the MacMillan cancer site as it is quite informative but stop googling. This site is filled with people who live with these conditions every day so we are the people who can walk you through this and calm your fears.

I hope I have helped ease your worries.

Just hug your kids and tell them your not going anywhere

Jill xx

Hi Jill , got tears in my eyes just reading your message as makes me feel so much better . It’s my twins 18th birthday today and you have just made it a lot happier for me . This seems a great site with good information as better than the scaremongering google sites of which I will stop looking , just got to get my bone marrow biopsy then the results and they will see what treatment I need ,

Once again thanks for all these lovely messages Shaun

jillydabrat profile image
jillydabrat in reply to Dolman

You’re welcome dear Shaun. I hope you can celebrate the twins birthday with smile on your face and a less heavy heart xx

Dolman profile image
Dolman in reply to jillydabrat

Thanks Jill , just one more question I have terrible lower left hand side back pain after standing a while and have had x rays before that didn’t find anything . Just wondered if that could be anything to do with pv as thought I read somewhere if your bone marrow is damaged it could cause lower back pain . Hopefully not

jillydabrat profile image
jillydabrat in reply to Dolman

I also have chronic back pain, as well as other joint pain. It is a symptom of PV I am afraid, not damage to the bone marrow. I have heard it explained that because the bone marrow is working so hard to produce an overload of red blood cells, the sheath that covers the bone marrow becomes inflamed and irritated, hence the bone pain. I never had a BMB, my diagnosis of jak2+ came from a blood test. Don’t be scared to use, or ask, for pain relief, being stoic is fine but letting pain ruin your life is silly. Hope you have a nice rest of your evening

Hi, Dolmam,

We all understand how scary the first diagnosis can be. I was diagnosed with ET Jak2 positive at age 52 through a BMB. I had it done at my doctor’s office and it wasn’t so bad. It stings a bit but it’s over pretty quickly. The BMB will give much more information so the doctor can prescribe the right treatment.

I wish you well on your journey.

Regards,

Cindy

Dolman profile image
Dolman in reply to Cja1956

Thanks Cindy and hopefully won’t be too bad . Thanks Shaun

Hi Shaun,

After we heard my husband had PV our world came crashing down. We looked on the internet it took us straight to the cancer pages.

Can I just say PV there is no cure but it's manageable which is good news.

My husband was 40 when he was diagnosed he's now 47.

He started off getting a pint of blood off weekly to bring down his heamatiric level down then he went onto monthly then three monthly he took a daily asprin this went on for 3 years . Then he started on hydroxy he took this for 3 years,

But he was getting extremely tired cut a long story short after a scan to show his spleen had enlarged they did a bone marrow biopsy. My husband was so chewed up he said it was nowhere near as bad as he thought it was going to be.

He's now on ruxolitanib which has brought all his bloods back in range. He's 47 years old now still a long way to go before retirement!!

He does suffer anxiety and depression but he manages that himself .

Google says life expectancy 5 years take no notice of that as that's if your condition is unmanaged.

Join mpn family on Facebook it's a UK based site you get so many answers from other sufferers

What is your occupation?

You can also claim on critical illness cover if you have this.

Try not to worry too much at this stage .

Take care Tracey

Dolman profile image
Dolman in reply to tracey13

Hi Tracey , I run my own business so it’s very hard to get time off and it’s exhausting too be honest . I checked my life insurance and I just have standard cover not critical illness on it .

tracey13 profile image
tracey13 in reply to Dolman

Maybe once you have had further tests they may out you on some medication to help your symptoms. Ruxolitanib has definitely helped my husband. He still gets exhausted but no where near what he's been suffering the last two years.

We know ruxolitanib can only manage his symptoms and doesn't stop progression we just keeping hopeful.

We still go abroad on holiday enjoy most things so we've put this PV/MF to the back of our minds for now.

I've notice you joined the Facebook page mpn family . It's a fantastic group very supportive too.

Take care

Tracey

Dolman profile image
Dolman in reply to tracey13

Hi Tracey , no not me as I haven’t got Facebook x

tracey13 profile image
tracey13 in reply to Dolman

I must of got mixed up.

You will get all your support on here.

tracey13 profile image
tracey13 in reply to Dolman

Just a thought My husband had to totally cut out caffeine it was absolutely draining him . He felt loads better once he started decaf.

Might be worth a try for you.

Tracey

Dolman profile image
Dolman in reply to tracey13

Hi Tracey , I will keep that in mind but I mainly drink de caff or water .

How’s your husband doing ? I got my bone marrow test a week today x

tracey13 profile image
tracey13 in reply to Dolman

He's up and down we've tried low GI diet . Some foods really effect him. Caffeine is a no go now he was drinking coffee to wake him up but it was doing the opposite.

He's on ruxolitanib it's made his symptoms better but he still gets so tired. Just wish I was the main bread winner.

He said his bone marrow biopsy wasn't as bad as he expected to be. He had his first one a year ago this month.

He's working full time but he's absolutely shattered on a night.

He said if fatigue and tiredness is what he has to suffer then so be it as when we go to the chemo ward for his medication there's people who are worse off than him.

He's just trying to stay positive .

Keep us posted on your BMB results.

Tracey

Dolman profile image
Dolman in reply to tracey13

Thanks Tracey , he seems like a very strong man . I wish you your husband and family all the best and thanks for replying. I will keep you informed once I have my biopsy and results back x

Mazcd profile image
MazcdAdministrator

HI Shaun, welcome to our forum, I can't really add anything to the advice and support you have been given by the lovely people on this forum, so will just say, if you want any booklets, or information about having a buddy then please email me at maz.cd@mpnvoice.org.uk and do read the information on our website mpnvoice.org.uk, you can definitely trust it. Best wishes, Maz

Dolman profile image
Dolman in reply to Mazcd

Hi Maz and thanks for replying .

I will certainly do that

Many thanks Shaun

tracey13 profile image
tracey13 in reply to Dolman

Max sent us the booklets Shaun they were so useful.

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