Discouraged and confused!

[lka2251]

Help me out?? Diag. in October 2015 with CLL. Had blood work on 6-2-16. at that time blood work highlights were WBC 19.2, RBC 4.22, HB 12.1, Platelets 244, percent lymphs 54%, ALC was 7500. Plan was watch and wait. Six trips to dr and as of 6-2-16 counts have steadily been going up. WBC 19.2, RBC 4.12, HB 12.6, platelets 228, percent lymph 69.2, ALC 13.3. While I was there thought my thyroid looked big so did ultrasound which did show solid nodes. had ct scan w/ contrast and waiting on results which I will hear on Thursday. Already set up with Endo dr but can't see him till July 6th. Talking needle biopsy which doesn't sound like fun to me. Was told endo dr would be the one to do biopsy. Sounds like a long time out if I need to have that done. Should I be more persistent??? So much for watch and wait. It doesn't look like I will be waiting or watching for very long. Am I being to negative on this?? I have worked for doctors all my life and I am not afraid to tell them what I expect. I recently changed PCP as was not happy with the one I had. I actually interviewed my new PCP and told him what I expect from him. I think I shocked him but he is working for me. Any input would be great.

[AussieNeil Administrator]

How did you get on with your March 24th KU Kansas City appointment?

While it's appropriate to be cautious and have the biopsy on your thyroid done, I don't think you need to worry about needing treatment for your CLL any time soon given yours is showing the typical pattern of the chronic condition it is. To get a better overall perspective, it's best to plot your blood test results and look for trends. Haematologists don't even consider checking the lymphocyte doubling time until your absolute lymphocyte count (ALC) climbs above 30, which will be some time off for you if your ALC continues climbing at the same rate, which it most likely won't. Most importantly, you haemoglobin and platelet counts are adequate and relatively stable. (Our lymphocyte counts tend to jump around considerably from test to test. Yours has only climbed about 6 in 8 months, so if that trend continues, your doubling time is around a year. At that rate, you will take quite a few years to get up into the 200+ category of some of our W&W members. A doubling time of under 6 months is one trigger for starting treatment, but it's the least important of them, with clotting (platelet counts) and anaemia (red blood cells/haemoglobin) being more critical.)

Also, totally forget the percentages and track the absolute blood counts; percentages lose any value when one blood count is out of the normal range.

Incidentally, most of this community wouldn't know if 6-2-16 is the sixth day of February or the second day of June and would assume the former. Use something like 6-Jun-16 to avoid confusion .

Read these reassuring pinned posts, which you'll find to the right (click on 'view 25 more' :

Why we need to track the absolute lymphocyte count (ALC) not white blood cell count (WBC) healthunlocked.com/cllsuppo...

When to Treat: healthunlocked.com/cllsuppo...

When do white count numbers trigger treatment? : healthunlocked.com/cllsuppo...

Let us know how you go early next month - which isn't that far away,

Neil

[dkay]

Thee CT scan that I had as part of the NIH CLL natural history study also detected thyroid nodules. They were biopsied via FNA and we're all found to be benign and are being left alone. A case of "disease" by screening. Many people have benign nodules in the thyroid, lung, and other organs and, if screened, get picked up, but they have no clinical significance. It's one of the downsides of medical tests. Hope you have the same outcome.

[Rpshe1]

I had thyroid nodes biopsied about 3 yrs prior to needing treatment. I believe it comes with the diagnosis in many cases. Your labs don't appear alarming so if you're feeling good I wouldn't worry about those thyroid nodes.