Hello, I am newly diagnosed and freaking out. I have only one blood test result so nothing to gauge against at the moment. Back to oncologist is 3 months. I was informed that my nodes are 1cm, wbc is 10 and that;s it. Any recommendations would be appreciated to move forward with this.
Thank you,
Hi Swissnology
Glad you found this community so quickly but sorry you had to join us. We all understand that initial feeling of panic but there really is plenty of time to come to terms with your diagnosis.
Lots of help available here and I would sugest not googling too much as you can scare yourself senseless.
Find the pinned posts on the right, and an excellent source of how to help yourself
has been written by PaulaS.
Breathe easy and take your time, ask all the questions you want and someone will answer.
Absolutely no need to hit the panic button as this disease is a slow one and many treatments are being trialled.
Best wishes
Bubnjay1
Hello and welcome. So glad you found us. I am a relative newbie myself (7 months) and I would firstly like to say that you will not always feel as freaked out as you do now. The second is-you have plenty of time to digest it all. when I was first diagnosed, I ran around like a headless chicken upsetting myself, my family and the few close friends I have chosen to tell. Boy have I calmed down from there. Here you will find empathy, support and endless knowledge. Please ask ANY question, however silly it may seem for you can be sure that there will always be somebody able to help.If we have to have this CLL then you are in the best place to be. Keep us updated. Peggy.
Hi Swissnology,
Welcome to the community, one we probably all wish we did not need to join.
It has already been said by Bubnjay1 and Peggy4, but let me re-iterate, please try not to panic. In general that does not achieve much other than upsetting yourself. The key message is typically CLL is a slow mover and monitoring is done in three or six monthly checkups. Yes, again typically Cancers are treated asap but with CLL many people stay on 'watch and wait' for months or years without treatment as it has been shown in the past that there is no real benefit to early treatment. Your specialist will monitor this and work with you to decide when to treat.
There is quite a lot of experience and information here so do not be afraid to ask. You should know very few of us are medically trained but we have first hand experience of our own situations (there are many variations with CLL).
Also check out the CLL Support Association cllsupport.org.uk/ where you will find lots more information. Please be careful of 'Dr.Google', whilst you will find useful information via Google there are also a lot of people with strange ideas, sometime very wrong and alarmist.
Welcome again, best wishes, rob
Hi Swissnology
I am approaching year six in March on watch and wait WBC is 78.
I can relate to how you feel as many here will also have experience dthe same but things do settle down honest
jules the flyer
I am sorry that you have also been diagnosed, however, you arrive at a time when the field is exploding with new therapies and the leaders in the field are now for the first time ever are having discussions about a cure. Yes: a cure. There is much hope on the horizon for all of us. One piece of advice I may offer is if you are able: establish with a CLL specialist in lieu of or in addtion to a general oncologist. The field is evolving at such an accelerated rate that the CLL specialists may take a different therapeutic approach than the general oncologists.
I can speak from first hand experience that a CLL specialist is imperative to establish with in the beginning of your journey, something I regret doing. This will eliminate unnecessary procedures and stress on you. Also, there are several good Facebook support sites, such as this, which provide good information from the members. You can't be to informed, IMHO! If you have questions, just ask, no matter how simple.
Hi, we all feel that way, the thing I read the most on this site is "we are in this together" . I don't really know about that but I have learned we are not alone it this ordeal. I was diagnosed about 5 months ago. I still spend alot of time learning and trying to find natural ways to fight. Im no good at watch and wait..when things go bad, then we will try to fix them...Im more proactive than reactive in my approch to things. First I would say get the doctors to tell you all your blood work, and what it means. Did they say stage 1 or anything. The other is to pay more attention to your ABS. LYMPHS count and your PLATTET count. On my doctors chart, 10.8 for wbc is the high, so 10 wbc is good.
Hi Swissnology,
I'd like to add my welcome to the greetings that others have given you. Though of course I'm sorry for the reasons you had to join us...
Bub has mentioned the posts I wrote for newly diagnosed people, but I'm putting the links here so you can find them easily. They are collections of the most useful points that I’ve picked up from my own and other people's experiences of living with CLL.
They are specially for people who want to DO something themselves, to help their CLL journey.
I was prompted to write them, because when people are first diagnosed, they are usually NOT told about simple practical things that can do, to improve their prospects on the CLL journey. Many folk have told me they wished they'd been given such information when first diagnosed...
I hope you'll find something there that's relevant to your situation. 
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
Wishing you all the best, as you continue on your journey.
Paula
Newly diagnosed with cll
Newly diagnosed with CLL
Newly Diagnosed CLL plus CTCL
Help! Newly diagnosed CLL
