todays blood tests

[DianeSH]

I see the oncologist on Monday and I had blood tests today for him to review and discuss at my appointment. 6 months ago he told me I had the precursor to CLL but on the notes of my test results it says "known CLL".....have I arrived already? I knew it was coming but thought it would take awhile. My lymphocytes went up just a little and my red blood cells went up to. it is all the other stuff I dont understand. My neutrophils relative were 29% . "Other cells: 67%, absolute aother cells 8505" It also said under morphology "Normocytic/normochromic"

it will be a long wait until Monday to have this all explained to me. I read comments here about some having stomach problems, being short of breath or having fatigue. I did not think that was supposed to hit me yet but something is going on and I have been having off and on pain under my ribs on the left side.

I am 75, survived renal cancer and endometrial cancer only to develop this. Things come in 3's I guess. This is my first appt with the oncologist since my flow cytometry test 6 months ago. I am not ready to get on this bandwagon again but have no choice.....

[AussieNeil Administrator]

Hi Diane,

You've been through a lot health wise, but perhaps your experience with CLL will be far less intrusive on your future quality of life. What you have provided unfortunately doesn't help me help you. We can only get some very rough idea of the rate at which your CLL is progressing from changes in your lymphocyte (Lymph or perhaps Lymph# result). You are fortunate to live in the USA, where you can arrange for testing of a range of prognostic tests, which will provide you with a list of markers from which your likely time to first treatment (watch and wait) and then likely response to treatment, which will influence your likely length of remission - or how easy it will be to keep your CLL under control, so that it has minimal impact on your life. Having arranged those tests, you are eligible for a free video consultation with a CLL specialist. See: cllsociety.org/programs-and... (In countries with universal health care, these tests aren't done until you need treatment, because they can change over time and influence treatment choice.)

Are you able to look through your blood test results and report the latest Lymph result please. It was 7.70K* last report. healthunlocked.com/cllsuppo... Please be aware that percentages are not very helpful when you have CLL. Their only purpose is when you need to calculate absolute blood count results when they aren't provided.

Neil

* With respect to your change in status from having the precursor to CLL (MBL or Monoclonal B cell Lymphocytosis) and CLL, that happened when your lymphocyte count, or more specifically, the monoclonal B cell portion exceeded 5K. So you were on the borderline of changing from MBL to CLL at the time of your last test.

[SofiaDeo]

The flow cytometry likely finalized the CLL diagnosis. And we don't look at percentages of the numbers, it often is meaningless. We look at absolute numbers of certain cells. Possibly measurements of certain organs like your spleen or liver, or lymph nodes. If you haven't yet read some of the introductory Pinned Posts here, please start doing so. Also, the CLLSociety.org website has a glossary as well as sections on Lab Values and Tests and Imaging. It's a good idea for you to start learning what the various terminology means. Then you can rest easier, knowing when a change is something that might need to be investigated further, or just a random fluctuation that isn't clinically significant unless there are other signs or symptoms you are having.

Like the pain under your ribs. That might mean your spleen is enlarging, even if your bloodwork hasn't changed much. At some point an enlarged spleen may be addressed. In my case, it got so big I could not eat enough without getting nauseous, and lost weight quickly. If yours is painful, your doc will probably take that into consideration, even if it's not enlarged much. Sometimes internal nodes can grow and cause pain, and you can't see or feel them. This would be seen on a CT, your doctor may ask for one.

Know that if something looked urgently life threatening, they would be calling you to go to the hospital, or be seen sooner, or something. I got a call once at 7am from my doctor when things *looked* off. It wasn't anything urgent, but they wanted to make sure it wasn't a problem.

Please consider a second opinion. At least do the free one from the CLLSociety.org website. They have a link to local CLL Support groups; the patients there can tell you which doctors they like in your region, and what the various practices are like, if parking is a hassle, etc. Many of us see a regional or out of state CLL Specialist intermittently, with the local hem-onc doing the blood tests and adjusting if not actually doing the treatments. Many of us here willalso tell you if your local hem-onc is unwilling to work with a specialist, you should get another doctor! Like everything else, there are some great local hem-oncs and some mediocre ones. Try to get a decent local hem-onc at least, if a CLL specialist isn't an easy option.