Newbie

[Phredie]

I'm new here. During annual physical, MD noted WBC was high (13) with smudge. Referred to oncologist who ordered flow Cytometry which gave me diagnosis of stage 0 CLL. Now, more than 11 years have passed and my WBC is 23.6 and Lymphocyte, Abs is 21.5. Currently on 12-month W&W, but concerned about changes (low platelets, petechiae, etc).

[Ironj]

What are your platelets now. To confirm you’ve have CLL for 11 years on watch and wait correct ? But you then say your currently on 12 months of watch and wait.

[Phredie in reply to Ironj]

I was on a 6-month W&W cycle, but then about 2 years ago, the Hematologist said that I could wait 12-month rather than return in 6-months. The last time I was seen was in April of last year, and my next appointment is this April. No idea where my platelets are now because I haven't had a checkup lately. A few weeks back, I had a small pin-prick bleed that just kept on bleeding. I basically put a spot of OTC antibiotic cream on the bleed to form a sort of seal, then bandaged on top of that. About 12 hours later, off came the bandage and the bleeding had stopped, but it didn't take much stress on that area to start up again. So, I repeated the last procedure and left the bandage on for 2 days. That fixed the leak. Happened one other time too, and now I'm very alert to any external bleeding I see, but what would happen if I develop some internal bleed? That's my worry now.

[Ironj in reply to Phredie]

If you don’t mind me asking, are you being seen by at minimum an oncologist or preferably a CLL specialist ? Watch and wait is just that but typically when your first diagnosed they check your blood every 3 months , that’s to track the pace of your CLL. Waiting a year for a CBC is way to long. Have you had a Fish test , mutation test done ?

I seen a local oncologist 2 times a year and I also go to Sloan Kettering 2 times a year to be checked on. I’m on watch and wait with no symptoms but I want to stay ahead of this as I’m sure you also do. That being said it doesn’t sound like your Dr is proactive at all seeing you one time a year or doesn’t understand CLL.

[Ironj]

I would change your search to the other CLL forum on health unlocked. There are tons of very knowledgeable people from the USA and around the world that are always on to answer questions. This site is very sporadic getting people to answer questions.