Blood Tracking 2

[shiftzz]

Picture of the book supplied by Leicestershire NHS to record your blood results etc.. A really good idea...

[bruddery]

I was diagnosed in University Hospital Cork, 10 years ago and from day one had my "blood record book" All results from both hospital and own g.p. gets written in. Also great because everyone close to me, and people at work know that my "blood book" is always in my bag in case of any emergency. And it has been used..... Vital when going on holidays.... Janice

[Rachelthepotter in reply to bruddery]

Brilliant. It makes so much sense. I’ve passed fhe idea on to the hospitals I use. I’ll see what happens. Many thanks. I like the name “blood book”.

[bruddery in reply to Rachelthepotter]

And jus so there's no confusion - it is RED!!!

[bruddery]

Forgot to add that in my book, treatments are written in especially important when changes occur. Janice

[Paul123456]

Thanks Shiftzz, interesting to see how your results responded to treatment. I note that at end of 2015 you had hopefully stabilised at a mix of 2 or 3 pills daily, I assume Hydroxycarb?

Can you say what your current doseage is?

Best Paul

[shiftzz in reply to Paul123456]

My current pills is 12 a week, they are migrating me onto Interferon... My Original numbers were

WBC hb HCT Platelets Neuts

12.70 18.20 0.614 1143 9.59

At those levels it was difficult

Since then, about 35 venesections, plus aspirin.

[Paul123456]

That’s good news, dropping from 19 to 12?

How venesections are your venesections and why are you switching to Interferon?

And how are your iron levels?

Apologies for all these questions. I’m coming up to point where need to start either Hydroxycarb or Peginteferon because concerned my irons too low. I don’t understand how I don’t feel fatigued yet my ferritin and iron single digits and MCV 65 (from 90 pre venesections).

Swaying towards Peginteferon, especially since appears first choice treatment in the States.

[shiftzz in reply to Paul123456]

Hi Paul

I have been on Hydro for about three years, no side effects, I was asked about moving to Pega about 2 months ago.. My numbers are fairly stable and they suggest that Hyro is a 'blast all' compared to Pega, so the long term effects may be less on Pega..

Venesection, mo great issues there, I visit the hospital job done, Blood out, saline in, 20 mins max... The staff are great and I have no side effects, sadly no real benefit either..

We are lucky in the UK as we dont have to worry about costs etc.

I am 61 years old, have been aware of issues for a long long time, but only diagnosed three years ago, even thought my doctor was aware there was a problem and ignored the suggestion to be referred,,,

Dave

[Paul123456 in reply to shiftzz]

Thanks Dave, typo on my part. How frequent are your venesections? I’m approx every 7-8 weeks but risk becoming too anaemic. Whilst I feel good, I assume result of PV maintaining my HB at > 130?, I am concerned that not great for the rest of me.

Will be interested to hear how you get on with Interferon - I assume you are getting Peginteferon?

Best

Paul

[shiftzz in reply to Paul123456]

I was having veneseactions every two weeks, this years its down to 4 in total... Anaemic, that's what they are trying to do, LOL

Interferon (pega) ok, I inject every week (Friday night) so far so good, nothing bad so far... This Friday will be my 5th injection.

I suspect that I have been undiagnosed for about 20 years., been feeling this was for a long time..

My sister died of a mouth cancer, so my parents are unaware, I was diagnosed with pancreatic cancer in January, false positive, turned out to be a dodgy gallbladder, removed in May... I was really down when the told me Pancreatic cancer, I was in hospital for 3 weeks,, Bilirubin 862 (normal 25) Cancer marker 15000, normal less than 30... So all the indicators were cancer... Really focused the mind...

D

[Sanga in reply to shiftzz]

Hi. It’s always interesting to read all the comments here and I often learn so much. I don’t normally post but I’m very invested in what u say about yr venesections and that u have saline after.

I was diagnosed with pv last November aged 51 and am on aspirin and venesections. 3 monthly now - Just had a BMB and getting results next week.

My symptoms seem numerous with itchy skin and occasional headaches and bone pain breathlessness sweats but I’m managing these fine with a change in diet and doing regular exercise etc etc and the living support of my husband.

It’s the fatigue that’s a killer. Usually fine hiwever My last venesection left me shattered and I’ve not picked up since. I know I’m in a stressful period of life currently but the fatigue is really heavy since August and affecting my mood now. So I’m wondering about impact on the body of venesections and why the saline - would it help recovery after - what do others find helps. Massages?

My iron is 7 but not anaemic other bloods ok.

Thanks Sanga

[shiftzz in reply to Sanga]

I have only ever had ONE venesection without saline and I felt rough, ever since then, always saline.

[amhann]

Aaargh - why can’t we all have one of these books!!! (I’ll be trotting off tomorrow to get something I can make into one) - it seems to be a lottery as to what information can be wrung out of the doctors! A while back I had a moan about it but at my last ‘stabbing’ session I did manage to get them written down (a good idea to take a photo but would be loath to try - am lucky to get a glimpse of the screen) - thanks for sharing the page - I will be copying it. Anne-Marie.

[Superwoman]

My hospital does this, plus I carry it around with me, so if ever needed, it is all there. Also carry an MPN card with details of all my drugs on with the booklet, made up a plastic wallet to keep it all in my handbag, and believe me there have been times I have needed it. So yes a very good idea.

Jean

[Jellybean129]

What a good idea! Why can’t they all do it!! Time to get Excel dusted down and make my own version!

I am on a steep learning curve at the mo and have yet to understand what all the numbers mean. As far as I can remember, only my platelet levels are raised (I am ET Jak2+) but obviously it is wise to track all results to spot trends.

Is there a list somewhere of the ‘normal’ ranges of all relevant results?

Gill

[beetle in reply to Jellybean129]

Hi Gill, I have been using excel for just this for years. It is the only thing I can do with excel😂😂. My son comes along and makes fancy graphs and things with my results but I wouldn't have the first idea how to do that! I do have the reference ranges at the top of each column and record results in different colour if they are out of range and a column at the end to record medication dose or any significant event - illness, surgery, hospital admission etc. I find it very useful to me but it is VERY basic when I see what excel can actually do!

Best wishes, Jan

[amhann in reply to Jellybean129]

Hi jellybean, I am also ET JAK2+ diagnosed 2 years ago but only recently on hydroxy. I was given a booklet + from that + some research my reading of it all is:

In ET the aim is to maintain platelets below 400 (not under 100)

White count ideally 5-10 ( not below 4)

Red count 3-5

Haemoglobin 11.5. -16.5

Neutrophils 2 - 7.5

Lymphocytes 1.3 - 4

Normal counts for a female being

Platelets 143 - 332

White count 3.9 - 11.1

Red count 3.9 - 5.0

Hematocrit 34.9 - 44.5

Haemoglobin 11.8 - 14.8

Neutrophils 1.7 - 6.1

I also head to my GP every 6months to get cholesterol, liver + kidney function checked

Everyone is happy with my counts for now so I’m being left alone till after crimble (I still think it’s ‘pants’ being shoved onto hydroxy but there is no doubt it’s bringing the platelets down- I just want to keep track of all the counts (hopefully without having to fight anyone for results)!

Hope this gives you a starting point for reading up.

Anne-Marie x

[Jellybean129 in reply to amhann]

Thanks so much Ann-Marie. You have been a mine of information. This may be an obvious question but why the liver and kidney function? I’m having a cholesterol test (never had one before so don’t know how it is - fingers crossed!) next week so at least that little one is ticked off for now.

Glad to hear everyone is happy with your counts and hope this continues. It strikes me most people have a bit of a love/hate relationship with hydroxy which I can well understand.

Gill x

[amhann in reply to Jellybean129]

Hi Gill - think I’m right with the counts stuff (would photo the table to post but I’m totally rubbish with technology)!! At the start of this journey I was utterly amazed that the hospital didn’t test for cholesterol so went straight to the GP (figured if I was having ‘vein disruption’ it would be sensible to make sure I wasn’t clogging up my arteries - it runs high in my family + won’t come down with diet so now I’m on a low statin - count for that is now just under 4 which is a relief as had hit over 8) - I have the kidney function checked as it flagged up initially (think I wasn’t hydrated enough) + they keep an eye on it but I don’t keep those counts as I think it may have been a one-off - same with the liver function- has not been any issue with it but it’s all ‘peace of mind’ + keeps my GP in the loop + it’s sometimes easier to talk to them. So I do the ET stuff with the hospital + the rest of my body with GP ( this from someone who never needed to go to a doctor for years)!! Hey Ho just roll with it! Anne-Marie x

[Jellybean129 in reply to amhann]

One of the things the haemo said to me was to get my cholesterol checked - I suppose if we are in greater danger of clots the last thing we need is clogged arteries! Good idea to keep the GP in the loop - I have yet to find out if any of the GPs at our surgery know anything about MPNs. I will go armed with MPN Voice literature just in case!

Thanks for all the info. I asked the haemo today for a copy of my latest blood test and he looked at me in total surprise and asked why I would want to have them! He apparently was too busy to hit the print button but said I could pick them up at my next appointment. I despair sometimes!

Gill x

[JSKly]

A very good idea. Wish it was a national thing.

[Bluetop]

I asked for printouts from the haem and then record on a spreadsheet which has helped me get my head round them all. I'm just switching to telephone consultation with a nurse specialist, so I will have to see how I get the printouts now. The book is a nice summary though.