'The first thing I tell patients is that there is no single number that tells me it is time to treat a patient. I think many docs start to get uncomfortable when things hit 100 or higher, but for the CLL specialists out there, 100 is often just another number and you will see things periodically go quite a bit higher. I suspect a number of CLL docs take a deep breath when things get much higher than 200 but for a stable patient without other problems - 200 isn't necessarily any worse than 50.'
Since being diagnosed with CLL nearly 14 years ago, my haematologists merely tell me that my condition is stable or otherwise and I don't bother with blood counts, as I have seen my elder sister (my CLL is familial) worried about her counts rising at the previous visit to her consultant. I did ask a registrar at one consultation and he was happy to tell me my counts but it seems the norm, in the haematology department at the hospital I attend, not worry patients with information that they have no control over and that suits me!
Hi I was told that when to start treatment is an art and not a science. Often 6 Dr's will give 6 different opions but will stay within the medical guidelines. Sometimes its a joint decision between patient and Dr.
I have had two previous lots of chemotherapy, CHOP in 2004 and Fludarabine in 2008, now my Prof is talking about starting me on Bendamustine and Rituximab at the beginning of February. My platelet count in already down to 33,000mm3 and my lymphocytes are 7,640mm3. I also had a right pneumonectomy in 2010 which is why I am not eligible for any clinical trials. I know that chemo is going to lower the platelet count even further, and I am concerned about this. I would really like some advice on how to proceed.
According to the Haematologist that I see, the commencement of treatment can depend upon a number of factors:-
The doubling of the WCC in a year or less
And/ or raised lymph nodes, enlarged spleen, dramatic weight loss accompanied by night sweats (or not), haemoglobin and platelet levels, etc.
The type of information that i get, however, depends upon who I see.
One conversation went something like this:
Haematology person:"Are you enjoying a good quality of life at the moment?"
Me "It depends what you mean by enjoying a good quality of life".
Haematology person "Well, if you are not enjoying a good quality of life, then we should be considering treatment".
The consultant that I see occasionally apologised for this when I next saw him.
Very good overview, but the devil is in the details...it isn't WCC or white blood cell count (WBC) it is a doubling of absolute lymphocyte count (ALC) . These are more accurate...
Here are the current treatment guidelines, you may want to give them to that hematologist person...
My GP and consultant have both told me the same that you can have a blood count 200 to 300 or more but will not need treatment unless you are showing other symptoms.
I think this paragraph from Dr. Sharman's blog explains what the 'other symptoms' are katier. Sometimes levels can be holding steady and then a troublesome node/s may become enlarged in a hazardous place compromising vital functions. I know we've had members on here in that situation and it's hastened treatment 'prematurely'.
'There are other reasons to treat that are not based on trends. Sometimes a patient has overwhelming fatigue, other times lymph nodes can become really troublesome. Sometimes CLL really compromises somebodies immune system and they keep getting significant infections (see video link to Brian Koffman video we did together: Feeling run down from CLL.) Those are fair reasons though somewhat "softer" indications to start on treatment.'
I think a personal sense of 'wellness' or lack of it must be factored in. There has to be an element of being psychologically prepared for treatment that goes hand in hand with physiological factors. I hope that my doctor will be looking at me holistically when the time comes to consider treatment. Actually I rather hope he will have reached retirement age by then but as he's probably in his 40's, it might be a tad optimistic!
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