Red cell mass test

[RedSunrise]

Hello. Thank goodness its Friday! Does anyone know if a red cell mass test is the same as the MCV result you get on a normal FBC? Somebody told me it was but for some reason I thought this was its own separate test?

[Ebot]

If we’re talking about the same thing it’s a completely separate test usually performed by the Nuclear Medicine department. It’s more of a performance than a regular blood test. It involves quite a lot of needle activity - blood out of one arm followed by blood (with tracer) re-injected into other arm followed by three blood draws - and a lot of hanging around. My experience (at Guy’s in London) was fine. I don’t think it is used routinely. You just need to have a plan to divert yourself for a few hours while they treat the blood before injecting. There have been a couple of previous posts a while back where a few of us regaled our experiences. All the best.

[Wyebird in reply to Ebot]

What was the reason for the test?

[Ebot in reply to Wyebird]

It was ordered when my diagnosis changed from ET to PV. I think Prof was just dotting the ‘i’s’ and crossing the ‘t’s’.

[Wyebird in reply to Ebot]

Thank you. Was that to confirm a PV diagnosis ? I have Et Calr. I’m also under prof H.

[RedSunrise in reply to Wyebird]

Hello Wyebird

How are you? We've been in contact here a few times.

I could be wrong but I don't think you can have CALR with PV. I'm still awaiting my CALR and MPL from 11 Jan! They won't tell me anything over the phone before appointments which is really frustrating. I've made a formal subject access request for my records now as I just need to know for my sanity!...

[Wyebird in reply to RedSunrise]

I’m down a bit. It’s been 3 and 1/2 years of a rise in meds to stablize my platelets to the 400 mark. So totally fed up. Just had the results of a fbc having another in 2 weeks. No I don’t have PV I have ET. After reading your post I did a little research and stumbled onto ‘patient power’. Did you know there are 43 treatments trials currently going on around the world?

[Wyebird in reply to RedSunrise]

When is your next appointment? I would have thought they would have had you back to discuss results straight away. Your situation makes mine so insignificant

Lots of hugs to you. Good luck.

[RedSunrise in reply to Wyebird]

Hello,

22nd of March which is in touching distance I know! However my last appointment was middle of Jan!

Oh gosh, not at all! Sometimes I feel awful posting on here because so far I'm very lucky. I do have some symptoms but they are not life changing. Just low in energy. My platelets have only been to 506 and everything else has been OK. I'm just worried because of what happened to me at 18 but I probably do need to 'chill out'! I don't handle ambiguity very well; I like all my ducks in a row and I read far too much! So, all in all this period of my life is not a good mix! But I'm lucky.

Genuinely, how are you doing?

Eve x x

[Wyebird in reply to RedSunrise]

Up until last blood test results 13 th March I was good( meds were working) now mentally not good. ( after reducing my dose Platelets have risen 90 in 2 weeks) Like you apart from fatigue I’m symptom free. I’ve had a number of unrelated health issues one of which is on going. Minor but debilitating.- Achilles tendonitis since last April. Walking is painful. I’ve tried alsorts. I’m still having physio. Even she’s baffled. In turn this has increased my fatigue. Guys are brilliant. I’m attending fatigue clinic at the moment. Just the support gives you a boost.

[RedSunrise in reply to Wyebird]

It like a layering effect isn't it? It's all so frustrating.

Have you been to a podiatrist about your Achilles Tendinitis? They would be best to see I would suggest, not a physio? Perhaps they'll assess you for orthotic insoles...

I don't know if you remember but I posted a while back about a support group with leukaemia care in Cardiff (I think you responded but you were going away)? They said that fatigue sessions were good - I think I'll consider. Any support is good as at times I feel like I'm driving myself around the bend and I don't want to inflict all this on those closest.

Anyway, happier thoughts... I assume you may be watching the rugby this weekend? If I remember correctly you have Welsh links? (sorry if not, I then am literally already around the bend!) 🤣

Eve x

[RedSunrise in reply to Wyebird]

Hello again! Sorry didn't see the two posts you made!

I'm sorry to hear you're down. It's completely understandable though. So many of us feel the same when I read posts.

That's such a long time altering medication - no wonder you're fed up with it. Thank goodness your platelets have come down now. What meds are you on now?

43! I'll take that as a positive for the future for MPNs. Of course, I'll have to do some reading on patient Power now! 🤣

Eve x

[Wyebird in reply to RedSunrise]

Oh yes I do remember now. Yes I’m welsh. Currently living in Yorkshire. Gosh you have a good memory. Definitely watching the rugby. I too tend to scan and miss info. Definitely consider fatigue clinic. Achilles’ tendonitis. Yes I was referred to a biomechanics clinic. I have insoles, sleep with a pillow under my ankle , done exercises, wear flight sock for support( big help.) Ice it, also had a scan. Currently I’m able to walk wearing backless shoes with slight heel and walking boots with a piece of carpet under heel. Physio thinks it’s related to sciatic nerve. We both also think it was a huge contribution to my cartilage problem which resulted in knee surgery in November!! Currently waiting for nhs physio.

Good luck on 22nd I’m there on 26th

[Ebot in reply to Wyebird]

It did confirm the PV diagnosis. TBH it was essentially a ‘belt and braces’ investigation.

[RedSunrise in reply to Ebot]

Thank you so much for your response. That's what I thought (although I didn't realise so much was involved). So, that will be a GP that doesn't know what they are talking about (not mine thank goodness!) I'll happily have an tests to put my mind at ease. Was your red cell mass raised (I understand that WHO criteria state it has to be at least 25% over the normal for PV diagnosis)?

So far the suspicion is I have ET but when I've been reading I'm wondering if there is any chance that I may have masked PV (my hb and hct are in normal range and I understand that these routine tests are used as an indicator for the red cell mass, which I've not had). My platelets are raised (I had a pulmonary embolism at 18 and I've just received my old bood results and my platelets were raised then (I'm 40 now)) , I'm jak2 negative (I understand there's a slim chance of being jak2 negative PV), my BMB was mainly normal but had grade 1 fibrin; also 70% cellular. To me there seems to be something definitely going on (not too severe thank goodness) but I don't want to be fobbed off at my next haemotology appointment. My haematologist emphatically dismissed my previous clot as an unrelated event for risk stratification (so I'll likely be low risk if I ever get a firm diagnosis) but she didn't even have access to my old files (no one did until I went to the records clerk at my old local hospital)

I just feel everything is a bit of a mess

Thanks again

Eve

[Ebot in reply to RedSunrise]

Hi Eve. I was presumed to have ET for a number of years. My original BMB was inconclusive in terms of the WHO guidelines and I was diagnosed as having an ‘unclassified MPN’ but treated as if ET. My platelets climbed and then plateaued around 1100. However some years on my HCT started to climb (I’m not sure I even took much note of it). And then on a routine visit it was way over. At that point venesections kicked in, I had another BMB and the red cell mass test. Slightly needled out! The Prof’s view was that the PV had just taken a roundabout way to declare itself (rather than this being ‘disease progression’). When my platelets climbed again and I was still needing venesections I then moved on to Hydroxy. HTH.

[RedSunrise in reply to Ebot]

Hi Ebot

Thanks for taking the time to write that - it's really informative.it sounds like I have potential to go down the unclassified route as I don't feel like I fit a distinct category with my test results.

I'm very sorry to hear about all the back and forth you have had. It just highlights how complex MPNs really are. I guess I'm hoping to try and avoid the uncertainty which may be inevitable unless I have every test going!

I hope that you aren't too symptomatic (I've not read any of your previous posts if you have some) and I hope you are tolerating hydroxy well. Was your second BMB still unclear out of curiosity? And I assume you may be triple negative if you were originally unclassified? I sincerely hope you don't mind all the questions (this site is God send!)

Thank you, massively!

Eve

[Ebot in reply to RedSunrise]

The second BMB confirmed the PV and infact was far more decisive generally. BMBs can be a bit hit and miss (apparently in the old days samples would be taken from both sides for this reason but this was abandoned as outcomes did not justify discomfort etc to the patient). I’m JAK2+. That was established at the very start. Very happy to answer questions. That’s what this Forum is for! I’ve posted quite a bit about the merits of Hydroxy and the lack of side effects. Hope you get the answers you seek.

[RedSunrise in reply to Ebot]

Thank you. I've learnt lots today!

I shall follow you and read your previous posts.

Best wishes for now. Perhaps our posts shall bump into each other in the future!

Once again a massive thank you for your very informative responses.

Take care

Eve x

[Ebot in reply to RedSunrise]

Pleasure. Glad they provided some useful insights. I’m sure others will have some helpful contributions. All the best to you.