UK CLL Forum, UKCLLFORUM

trigger points

Topic Made On: Jan 03, 2009 04:07pm
tom54

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hi all happy new year

i will have my next quarterly blood test this month which will show if my twc has doubled in last year from 11.22 to over 22. at present it is 16.9.

at what levels would tiredness set in? and if my blood count has doubled will it mean chemo?

recent news reports this week say that trials of grape seed extract has successfully destroyed leukaemia cells in mice and may be used as treatment.

does leukaemia cells refer to malformed white cells in cll?

bought my first supply from holland and barrat yesterday (100mg)




Replied On: Jan 05, 2009 01:38pm
Swainson

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Tom,

I’ll give you the benefit of my experience; however I’m sure there are many, more qualified than me and I suggest you keep an eye open for other replies as we’re all different and it’s very dangerous to generalise.

Having said that very briefly my story goes along these lines: I joined the club with a white cell count of 50.7 and pneumonia! It took around a year for it to double and top out at 118.6 and this was one of the triggers for treatment to start. Having said that I think the numbers were more of a trigger than the ‘doubling’.

As my haemoglobin count dropped (as the white cells increased) the tiredness started, but during the early days (I walked The Pennine Way with a white cell count of 63) anything under 80 seemed to have little impact.

Can’t help you with the alternative therapy (put all my faith in chemicals!) but I hope the above helps a little – good luck.

Jim



Replied On: Jan 05, 2009 04:15pm
Robert Cork

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Tom

In answer to your questions.

At what levels would tiredness set in?
We all respond in different ways, there is no definitive number to say when tiredness will start to take hold. I know from personal experience that when my Hb drops to below 10 I start to get tired during the day, which results in the need to nap in the afternoon and evenings.


If my blood count has doubled will it mean chemo?
Lymphocyte Doubling Time is just one of the “low tech” indicators that is sometimes used to predict treatment. Remember that CLL resides in many places in our bodies, lymph nodes, bone marrow, spleen and circulating blood, so the blood test is just a small proportion of the total number of cells that exist.

There are better prognostic indicators that can be used to predict treatment:
• How you actually feel can often be one of the best indicators. Tiredness, loss of appetite, weight loss, re-occurring infections, fevers, fatigue, bone pain, abnormal bruising and excessive sweating are possible indicators.
• Your Hb level. A falling count may make you tired and with no energy.
• Your platelet level. Once again there are no definitive numbers, but a platelet count of less than 100 could start to indicate the need to think about treatment.
• Progressive enlargement of the spleen and lymph nodes.

We are all so different in this highly variable disease. In my own case over the last 2 years my white cell count never went over 5, but I needed treatment just recently due to a compacted marrow, falling Hb and platelets. Other people have a white cell count of 100’s of thousands and have never had treatment!

Does leukaemia cells refer to malformed white cells in cll?
It’s my simple understanding that the B lymphocytes cells are malformed in that they just do not die when they are supposed to. Hence we have too many of them circulating in our bone marrow, lymph nodes and blood. They subsequently “crowd out” other cell lines (platelets, haemoglobin).

In summary, if you feel well and your counts are good, you may not need treatment. BTW how do you feel and what are your other counts?

Hope this helps.

Regards

Robert



Replied On: Jan 05, 2009 08:04pm
adef

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Hi Tom.

Is this the news you were mentioning?
http://news.bbc.co.uk/1/hi/health/7803619.stm

"Although interesting, it's still a long way from being a treatment that we can give to patients."

The researchers used a different kind of leukaemia cell ( a myeloid as opposed to a lymphocyte line) so I don't know what conclusions we can draw. Why not ask your consultant when you go for the blood result?

My preference would be for the other parts of the grape that arrive in a bottle.

Adrian.




Replied On: Jan 06, 2009 07:47pm
tom54

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thanks everyone for your replies.
robert my other readings to date are as follows

MONOCYTE 0.51,
HAEMOGLOBIN 13.8,
LYMPHOCYTE 13.35
WHITE CELL TOTAL 16.9,
RED CELL TOTAL 4.5
PLATELETES 268













Replied On: Jan 07, 2009 09:25am
Robert Cork

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Tom

Those numbers look overall very good!!!

Robert



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