Starting FCR next week and wondering just how BAD my blood count is - I have just taken sight of this today so being a bit vague about things just want to know whereabouts I would fall - I was on watch and wait for about 8 years WITHOUT knowing it UNTIL I was officially diagnosed just over a month ago - bit of a shock but not to worry -
Haemoglobin 97
White cells 6.9
Neutrophils 4.2
Lymphocytes 1.8
RBC 3.42
I have other readings as well but have heard of the ones above when reading - are any of them staggering high or low?
Thanks
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Strong-happy2
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Thanks for that Geoff I will read those!! I wasn't aware of it!
No night sweats or ANY obvious symptoms - outwith maybe a bit tireder but nothing to really speak about - but glands on neck blew up recently and no sore throat or cough or anything so went to Doctor - I originally saw haematologist as after being diagnosed with MGUS - 8 years ago and was just getting bloods taken to monitor the paraprotein - nothing was ever mentioned about anything - anyway maybe it was better that way - as nothing really could have been done to change that! I am female!
Geoff is right; the only blood count result of those you've provided that is likely to be causing you any symptoms is your low red blood and haemoglobin counts. You actually just scrape into grade 2, moderate severity anaemia: hgb 80 - 100. As your haemoglobin gets into this range, you'll have the typical signs and symptoms of fatigue, pallor, shortness of breath, dizziness, etc, so no wonder you are feeling a bit more tired.
The posts to the right are associated posts to this post and I suspect will change as the post and reply content changes. (I don't see a Blood Counts? link on my view.) We don't actually have a pinned post specifically on blood tests, but have a look through the top posts from this search result:
Your lymphocytes are actually within the normal range, so you fall more into the SLL camp (CLL cells congregating in lymph nodes rather than the blood). One test result you haven't reported that is important is your platelet levels. Presumably its your anaemia and possibly low platelet count, along with your swollen lymph nodes that have resulted in your specialist recommending treatment?
Your platelets are fine. You've only included one 'liver function test' ALT, which is also fine. The others you need to watch are AST and ALP. Also, there's one more that is worth keeping an eye on which again you haven't included, which is LD or LDH. That reflects how fast your CLL is growing and a big jump can be an indication of Richter's Transformation.
I haven't gone through the rest of your results. If you want to track them during your treatment, I can supply you with a spreadsheet that you can use. Just drop me a PM with your email address and I'll send it to you. I'm hoping to have it available for download from the CLL Support Association website, after it has been quality checked. You can help me with that!
Hi there - a bit surprised you are starting FCR with these types of results to be honest. Your Lymphocytes 1.8 number is very much in normal range...like others hinted your Haemoglobin may be only thing of concern...from what I read people usually don't start treatment until their Lymphocytes gets over 100..and then there is something call Lymphocytes doubling time to look at...have you consulted with someone with experience in CLL? What do they tell you about the reason for starting treatment?
How is your spleen, bone marrow penetration - those are significant factors to consier before starting FCR (which is not a vitamin C)...
I agree with hanskloss. With your gradual revelation of your blood test results and other symptoms, in your shoes, I too would be asking for a second opinion. Have you had a bone marrow biopsy to see what the state of your marrow is or other tests to determine why you are anaemic? You also mentioned hyperbaric treatment, which is rather unusual. Are you able to divulge where you are being treated and by whom? You may well be provided with a recognised CLL expert close to you where you can get a second opinion to put your mind at rest that you are being provided with the best treatment for you now - OR you may find that there's another treatment that comes with less risk and a better quality of life outcome.
As hanskloss says, FCR is not vitamin C. There's a 5% mortality rate with first treatment and side effects can linger for years - sometimes permanently. That's why watch and wait is the better option as long as you have adequate quality of life with CLL. Conversely, if you do need treatment, then you shouldn't put it off too long, or you have a higher chance of ending up in that 5%...
I'm not a doctor either, but from what you've divulged and unless you have some other significant indicator that treatment is required soon (like a large internal node pressing on some vital organ which would be picked up in a CT scan), I can't see any reason why you shouldn't be able to defer the start of treatment until you are absolutely sure that it is right for you, right now. If your anaemia worsens, that too can be propped up by blood transfusions while you investigate further. For your own peace of mind, ask your specialist why you need treatment next week and seriously, go and get a second opinion. There may very well be an excellent medical reason that you don't know of that means FCR is the right choice for you now, but don't you think you should know? With CLL, it is rarely the case that treatment needs to commence at short notice. But even if a doctor looked at what you've provided on this site, they'd be an incompetent doctor if they didn't properly examine and assess you before making a recommendation as to whether you needed treatment and what and when that should be.
I was thinking about it a bit more ... and I am not a doctor so please consider that fact as well but nothing, abosultely nothing in your current results indicates to me you are dealing with CLL which is Chronic LYMPHOCYTIC leukemia. Just the fact that you have some enlarged lymph nodes means completely nothing i.e. does not prove or indicate you have CLL. You have no bone marrow biopsy done with phonotypisation, you do not know if your spleen in enlarged, you have normal lymphocyte count, you have absolutely no secondary symptoms such as frequent infections or night sweats. There are tons of other reasons why lymph nodes could be enlarged and if this is the only thing , you should really try to investigate this rather than jumping into serious chemo therapy. Low Haemoglobin could indicate some anemia issues but by itself it is no indicator of CLL.
This is what I know based on my own dealine with my own CLL...and I had 46k lymphocyte, less than 6 month ALC doubling time, enlarged lymph nodes on both sides of abdomen and slightly enlarged spleen. I went onto FCR last year.
Don't panic - it may not be CLL afterall. Investigate , get second opinion, do more tests - this is my advise.
Per associated thread, (see below) Strong-happy2 has a diagnosis of Waldenström's macroglobulinemia, which as Chris/Cllcanada points out is also a B - Lymphocyte cancer that occurs after the B-cells have matured to plasma cells. That's why FCR works and no doubt why Strong-happy2 sought advice on FCR treatment from a site supporting members that also have the same FCR treatment. No doubt it would be much harder to find support sites for Waldenström's macroglobulinemia...
But knowing of the different diagnosis up front would have helped!
Welcome anyway Strong-happy2; we hope that the feedback here will be helpful. Don't hesitate to let us know how your treatment goes and ask if you have any treatment related problems that our FCR experienced members may be able to help you with. But please preface your question with a reminder that you don't have CLL but Waldenström's macroglobulinemia .
The lab at UCLA now gives the bottom of normal for women as 11.6 at one draw station and 11.1 at another - frustrating. Quest gives 11.6 as the bottom number. In the past it was always 12.
Ranges vary from laboratory to laboratory. Part of that reflects the small variations range in nationality with some tests but it may also be due to the particular measurement process. I've seen a change in the lymphocyte range from my provider, but no reason was given. Given the upper and lower limits are derived from +/- two standard deviations of the median value in which 95% of the population will fall, laboratories are able to determine the actual range of their clients from the thousands of results that they generate and may adjust their range limits accordingly.
Note that Wikipedia says "Blood tests results should always be interpreted using the ranges provided by the laboratory that performed the test."
"Reference ranges are usually given as what are the usual (or normal) values found in the population, more specifically the prediction interval that 95% of the population fall into."
and
"References range may vary with age, sex, race, pregnancy, diet, use of prescribed or herbal drugs and stress. Reference ranges often depend on the analytical method used, for reasons such as inaccuracy, lack of standardisation, lack of certified reference material and differing antibody reactivity. Also, reference ranges may be inaccurate when the reference groups used to establish the ranges are small."
Frankly I don't consider the small amounts we're quibbling over of any significance. CLL tends to cause results way out of the normal ranges. I usually get around half a dozen abnormal results highlighted on my blood test results and many of those are nowhere near the range limits.
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