Survival rates and red blood count link.

[Jamie_james]

Hi folks

so yesterday i asked if anyone had tried to improve their red blood count with diet as i read an article which suggested that a good red count was key to long term survival.

A few people replied but i couldn't find the piece. i now have it!

ascopost.com/issues/may-15-...

(second paragraph in praticular)

It's an interview with Dr Kanti Rai - so it should have some credibility.

I found a place in the uk that will do a full blood count test for £20.

I am definitely going to try a few things to keep my red count stable and if i can afford it i might get some of these tests done to have a look for evidence of improvement of not.

Hope this is interesting and helpful.

Jamie

[AussieNeil Partner Administrator]

Thanks for finding that reference to red blood cell count and prognosis Jamie. Importantly the paragraph you refer to relates to Dr Rai's research of 40 years ago, where he identified factors that could be used to determine what stage of progression a CLL patient was in (and hence their life expectancy), which is now known as Rai staging. There's also Binet staging, but Rai staging is more common. Recently, there's been a move to a combined/replacement patient risk assessment process, when you are 'staged' into low. intermediate or high risk, but it seems to be slow in catching on.

From the 2008 Guidelines for the diagnosis and treatment of chronic lymphocytic leukemia: a report from the International Workshop on Chronic Lymphocytic Leukemia updating the National Cancer Institute − Working Group 1996 guidelines: bloodjournal.org/content/11...

"The modified Rai classification defines low-risk disease as patients who have lymphocytosis with leukemia cells in the blood and/or marrow (lymphoid cells >30%; formerly considered Rai stage 0). Patients with lymphocytosis, enlarged nodes in any site, and splenomegaly and/or hepatomegaly (lymph nodes being palpable or not) are defined as having intermediate-risk disease (formerly considered Rai stage I or stage II). High-risk disease includes patients with disease-related anemia (as defined by a hemoglobin [Hb] level <110 g/L [11 g/dL]; formerly stage III)(my emphasis) or thrombocytopenia (as defined by a platelet count <100 x 10 9 /L; formerly stage IV)."

So you can see that having a low RBC count is a specific requirement that puts you into the high-risk disease/stage IV category; you have to have CLL related low platelets (below 100) or anaemia (below 110). Anaemia is due to a low red blood cell count but it is much more accurately measured by measuring haemoglobin). Having that degree of anaemia would most likely be due to an enlarged spleen (splenomegaly) and/or bone marrow infiltration, which is what I said in my earlier reply.

So unfortunately, as I said yesterday, CLL caused low red blood cell count/anaemia is a consequence of advanced CLL. Boosting your red blood cell count (which you can do with drugs by the way i.e. *erythropoietin - it's how some professional cyclists tried to cheat by boosting their blood's oxygen carrying capacity), won't change your life expectancy with CLL. That's because you aren't addressing the root cause of the red blood cell count - the advanced CLL...

* en.wikipedia.org/wiki/Eryth...

Neil

[Jamie_james in reply to AussieNeil]

thanks for the info Neil.

[HAIRBEAR_UK Founder Admin]

Hi Jamie

Thanks for finding the link to the article and paragraph you mentioned yesterday. As Neil has explained the paragraph you mention seeks to explain the earliest trends that Dr Rai found when first analysing patients’ blood counts looking at survival rates of 100 patients back in the 1960’s

I think Dr Kanti Rai is describing the initial discovery of a trend that raised his curiosity and lead to his investigation into understanding why this was the case and what was the significance of red blood cell count, platelet count and survival trends? Understanding what was behind this would help clinicians to understand what stage a person’s CLL is at. But much more was needed to be understood about CLL progression and CLL types to determine how to best manage & treat patients.

This lead to DR Rai proposing the Rai staging system that is still in use today .

Here In the UK the Binet staging system is used, both were put in place some 40 years ago. (This is explained in links below)

There has been an explosion in knowledge & advances into how CLL is managed and treated since those early days . I think that this was the gist behind the article you have posted and that much or this early work underpins how CLL is managed today.

The diagnosis article written By Dr Samir Agrawal for CLLSA is worth reading cllsupport.org.uk/cll-sll/s...

Professor Fegans 2014 introduction to CLL for those recently diagnosed may help with understanding where we are today, how CLL is managed and staged and why red cell and platelet counts are part of this. cllsupport.org.uk/welcome-f...

The UK Leukaemia & Lymphoma Research (Bloodwise) CLL booklet leukaemialymphomaresearch.o...

and Watch and Wait booklet leukaemialymphomaresearch.o... are good foundation reading written in patient friendly language..

Best wishes

Nick

[Jamie_james in reply to HAIRBEAR_UK]

Thanks Nick