Questions and fears

[JW1995]

It's Jake again . Soon you will all get to know me as the most nervous 22 year old in the world haha. Okay I should probably stop googling all these sites and studies and what not because it's doing me no good. My two biggest fears now are (heck I haven't even been diagnosed WITH PV and if I am it's currently mild ) but my two fears are it becoming MF or CML or ALL. I get the statistics are less then 15% for MF and less then 10% for C/AML from what I've read but I'm still terrified . Especially being 22 since maybe the risk is longer for me? Any statistics people can share with me?

[JW1995]

Should say AML instead of ALL

[Aime]

Hi Jake, the best and most trustworthy place to get information is on the MPN Voice website or directly through Maz, our editor, who gets it straight from the experts including Professor Harrison at Guys whose knowledge is world renowned. Maz can also provide you with a buddy to talk to.

I know it's scary to read such stats but there are a lot of people on this forum who have lived with PV for a lot of years and are still here today. I'm 59 with PV which is trundling along at an even pace at the moment. I still work full time, have quite bad osteoarthritis and two lively grandchildren who I have loads of fun with. Yes I have my bad days when I feel low but I go onto this forum and get support and information and I'm a different person.

You are at the scariest stage when you are going through the process of tests and results - I felt it was a roundabout I couldn't get off of. Everything was overwhelming and then I found this forum where people who do genuinely understand what you are going through can empathise with you even though they may be strangers. I have made some great friends (of all ages), most of whom I haven't met but they will listen to me and reply at a drop of the hat.

Keep yourself as healthy as you can: eat well, drink plenty fluid, exercise as your body allows, rest if your body tells you to but above all keep in touch with this forum. As you get a diagnosis and learn more about your condition from trustworthy sources, you will begin to feel you have some control over your condition. Any medical appointments you attend, go armed with your questions written down and insist in getting answers you are satisfied with. I'm a different person since being diagnosed - far more assertive nowadays.

By the way I work in road safety and statistically I'm more likely to be killed or seriously injured on road than for my PV progress to something nasty!

Please stay in touch, kindest regards Aime x😺😺

[JW1995 in reply to Aime]

Thank you!! so much Aimee!

Best of luck to you. Stay strong!

[JediReject in reply to Aime]

Yes Aime a very reassuring response. I scripted one and got the dithers due to low blood sugar and accidentally hit the back button and lost the whole thing, DOH. The thrust of it was as you mention to get an accurate diagnosis ahead of seeking stats on transformation to owt more sinister as we all present individual cases. And there many different individual MPN characteristics to be taken into account by your expert consultant.

And that googling can be a dangerous game, better sticking to reputable sites like this.

Aime your job reminded me of one of those Dom Jolly jape programmes where they set up a spoof roadworks and had a chap holding a lollipop sign with red STOP sign towards oncoming traffic. Cars were backed up,after a minute he slowly turned it round and the first car edged forward but it had STOP on the reverse side as well. . . Very funny 😂😂

Good luck with your diagnosis Jane and please refrain from googling too much! !

Cheers Chris

[jillydabrat in reply to Aime]

Brilliant response. This is positively the best place to find answers. There are no better experts than those who are experiencing what you are going through yourself. Keep in touch my friend xx

[Kinsalelady in reply to jillydabrat]

I could not agree more. This website knows more than two Hematologists that I have seen. The knowledge and support are awesome. Keep in touch. XX Harlie

[zvinkovic]

Hi Jake,

Young males can have increased hemoglobin and RBC, also they can go up if you spent some time at high altitudes. Maybe do another CBC in a few weeks, but next time make sure you drink enough water on the day before and the actual day of the blood draw. Hydration is a major factor in blood viscosity. Also make sure you don't eat foods that influence production of red blood cells in the week prior to blood draw or consume B vitamins or iron supplements. (When I prepared for extremely hard exam I used supplements Lecithin and B vitamin for better memory and that made my hemoglobin rise from 115 to 137 and RBC from 4,3 to 4,95, and I used it for less than a month. I have ET, and my hemoglobin and RBC are for years closer to lower end of the scale.)

If after all those measures of precaution you still have high counts, then try to ask for JAK2 test, it should give you a definite answer whether you have polycythemia or not, and at least you will know where to go from there.

Let us know what happens next and fingers crossed your high numbers don't turn out to be from PV.

[JW1995]

Thank you guys. I feel so much less anxiety on the forums then all these statistics websites listing off these long medical gibberish slang I don't even know how to say let alone know what they mean. Hydration is key I'm sure. I don't usually drink 8 glasses of fluid a day like they recommend I have probably 3. Also interesting to hear younger males can be elevated . So it's possible that my counts will be just naturally high on their own . (RBC and HGB were the only two slightly high)

[lizzziep]

Lots of good advice for you especially from Aime and Chris, both very knowledgeable! When I was first diagnosed I read all sorts of stuff on the internet about ET, 99% of which was absolute rubbish - but I didn't know that at the time and was terrified. Fortunately I found this site and after reading about others experiences realised I hadn't got that much to worry about.

You're young and fit, you should have a long, full and fun Life in front of you. Listen to your body, rest if you need to, eat as healthily as possible, keep hydrated. But most of all enjoy yourself, you've been diagnosed which is half the battle get on with your life as much as possible.

Best wishes

Lizzie

[JW1995]

I'm a huge worrier and stress a lot which probably does have an effect on some blood levels to an extent. Everything I did read online said risk of transformation from PV to MF was 15% or less and the AML risk was 5%-10%. So an 85-90% chance nothing like that happens . So I should feel worry free but for some reason those numbers still scare me. I'm scared that it'd change overnight and I'd be bed ridden In hospitals . Thank you for you're help everyone it is so much more reassuring reading these stories and your advice then the scary stats online

[Brook04]

I worry about the same things as you jake, my partner is 33 and he was diagnosed they said he sits in between them all. But hasn't got Mf so it's confusing ,he is now on interferon and his levels have all been fine. But I done exactly the same going on Google,putting in how long can u live etc and it just made it worse.

[JW1995 in reply to Brook04]

I think that's a thing we all do but shouldn't . It's hard not too but reading here people have had PV and ET for multiple decades and there's more treatments in the pipeline that will prolong that even longer and maybe one day even cure it. Best of luck to you and your partner .

[Aime in reply to Brook04]

Hi Brook4, sometimes it's a shame because on the forum I sometimes forget that our families are going through this disease with us and it's hard for them too. The forums Maz organises throughout the UK have a relatives group discussion which really helped my husband understand.

Kindest regards Aime xx😺😺

[Brook04 in reply to Aime]

I think I'm worse than him , he just takes it in his stride . I panic cos of the kids what could happen etc ,I ask thousands of questions ha x

[Aime in reply to Brook04]

Of course you do, it's only natural, especially if you are a mum as well! Take comfort from the fact there are a lot of us who have lived through many years of our illness and are still here.

Once Maz puts up the forum dates for this year, try and get to one if you can because the relatives go away in a group by themselves and exchange worries, stories, etc on how they have come to terms with their loved ones illness, etc.

Keep in touch with this forum too because like my family you are going through the illness with your loved one and it is hard and anxiety can spoil day to day life together.xx kindest regards Aime xx😺😺

[Brook04]

That's exactly what my consultant said.

[JW1995 in reply to Brook04]

I think that it is very true too. The transformation risks are very very very low and treatments today keep the majority of people well under control . Even though the numbers of transformation are very low risk (specifically AML) I still get worried. The risk could be 2% and I'd still be worried

[Brook04]

I'm the same ,even though he's on inteferon I think oh what if he has his bloods and it's now gone into this . I'll always worry just one of them things .

[JW1995]

My levels thankfully aren't overly high and in fact by some standards could be considered high normal. My fear is overnight it'll outright turn into something much more severe which really won't be the case. As humans we tend to look at the worst case scenario a lot of the time and that probably makes conditions such as these or any condition really much worse then it really is.

[Hidden]

Firstly you are so young and therefore if you do have PV you have youth on your side! Do not google lots of sites. Don't focus on the what could happen, otherwise you will drive yourself mad.. believe me from someone who knows.

I was diagnosed with PV in my mid 30's although symptomatic for 4 years - if they are catching it early even better as you get your life back, I felt like I lost 4 years due to feeling so awful and constant migraines.... BUT once I started on aspirin and venesection life was so much better again..

I won't lie and say everything is perfect but if you check out stories and videos on Patient Forums you will see that there is 3 ladies who are much older than you coping very well, one of them is me!

I am approaching 43.. I am still on aspirin and venesections...

Please do not worry about what might happen a long way in the future or never at all..

Sorry if I sound like your Mum haha! Everything will be ok Jake. It's manageable and you don't even know for sure yet if you have PV. Relax and enjoy life, live in the moment and just don't take it for granted. Sometimes I feel PV was a gift to make me appreciate life more. Cancer does that to you.

Big love

[Aime in reply to Hidden]

Totally agree Surreygirl, PV has made me appreciate life a lot more but in another way it has taught me it's not worth wasting time worrying about something which may never happen. I have done this and wasted time!

I try and take each blood test or other tests as they come and think the results are going to be what they are going to be, so just wait and see. I say this to myself if I start to get anxious and it seems to help.

If I'm feeling sorry for myself (and it happens), I watch a hospital programme or similar and see people much worse off than me and know I have got a lot to be thankful for. I also take inspiration from our Chris who has been through so much and one of my pals who soldiered on through breast cancer and has never looked back since.

Sorry Jake I probably sound like your Mum too (or your Gran), keep in touch with us so you know you have people to turn to who really understand what you are going through but most of all you will become less anxious and enjoy life more soon as you settle down with a diagnosis. It takes a wee bit of time but it will happen.

Kindest regards Aime xx😺😺

[ggrana in reply to Hidden]

Hi , I was wondering what your counts are. I have Pv also and I'm on same - aspirin and phlebotomies when needed. They are thinking of putting me on meds now because my platelets are 1.7 million and my WBC is 27. I'm 46 and don't have many symptoms . It's been 4 years . My platelets have now doubled. They were 900 when first diagnosed.

[Hidden in reply to ggrana]

That is high for platelets because they have a general guideline of 1.5M being the max. However I am sure I remember talking to a girl at Guys another patient who has ET and her platelets were really high and she has never gone onto meds.. she even had a baby. She is quite an inspiration and one of the first people to be diganosed with ET. She's quite a private person so doubt she is on here! My platelets are ok, and my WBC is ok last time I had tested. I guess it's about symptoms but also if maybe they see a high risk... how is your HCT?

[BECCA8]

My family member is getting tested for PV, to have PV would your white cells and platelets be high if you had this or just red blood cells? His red blood cells are high at the mo ? and having tests ? Thanks

[Aime in reply to BECCA8]

Hi BECCA8, if you go onto the MPN Voice website, you will get trustworthy answers to your questions.

We are all different. I have PV with high red blood cell and sometimes high platelet counts but so far my white blood cells are ok but I don't think everyone is the same.

Kindest regards Aime xx😺😺

[Hidden in reply to BECCA8]

It can be RBC or WBC and Platelets or just RBC.. like Aime sadi go on to MPN Voice website for more info. My WBC always been ok but others have issue, otherwise for me it's platelets and RBC. Everyone unique though.

[BECCA8]

Ok thanks Aime x

[JW1995]

My issue is RBC and HGB. My HGB is 17.3 and RBC 6.04. Platelets around 324

[Gloriusezra]

I think you should stop googling coz everybody have a drifrent reaction.. From my point of view.. You should more worry about the hematocrit instead the hb and rbc only..

I have secondary polychythemia too. And already 3 times venesection.

Good luck

[JW1995 in reply to Gloriusezra]

My last check my hemocrit was around 49. I was able to go back further and check to previous cbcs and it has always hovered in the 47-49 range

[BECCA8]

Hi- Did anyone have scans to diagnose Polycythemia or polycythemia vera? My brothers having Xray and MRI scans not sure why tho? thanks

[JW1995 in reply to BECCA8]

My understanding is polycythemia is diagnosed via a CBC blood test/JAX2 . The MRI would be used to check the brain and a CT Scan/ultra sound can be done on the spleen

[BECCA8]

Ok thanks