CLL: Diagnosed On Dec 11 2017 , I go every... - CLL Support

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CLL

Shellcanada71
Shellcanada71

Diagnosed On Dec 11 2017 , I go every 3 months for blood work,My WBC is always out of range 16.7 asof latest one, and my lymphocytes are always out of range as well 11.2 latest one, I have smudge cells present , Today was first time my MCH was low , now outrageously low but low. It scared me , I know I am aways off from treatment but seeing something new on blood reports scared me.I am not sick nor have I been , no infections etc. I am watch and wait . I hate it watch and wait . for this ticking bomb that can be months or years to be treated or perhaps never , praying for never.

5 Replies
oldestnewest

Especially when we are new, we tend to react to any change in our labs. It is important to look at overall patterns, rather than individual reports. I have actually had the same labs drawn (requested by different doctors) seconds apart, through the same butterfly, and had some of the counts come back different - sometimes one in range, while the other one is out. It takes a while to relax a bit when getting lab reports, and I think most of us focus on the highs and lows on individual reports, but they are often insignificant or due to lab error.

Dr. Susan LeClair has some very good videos on patientpower.info about understanding our labs, as well as things that can affect them. I recommend them to everyone.

Jm954
Jm954Administrator

Hi,

watch and wait is hard but there are things we can do to help ourselves live well. See this post from PaulaS healthunlocked.com/cllsuppo...

and another from lankisterguy healthunlocked.com/cllsuppo...

with best wishes

Jackie

Hey Shellcanada

You have the lowest counts I have seen here, and if they are stable then you have NOTHING to worry about.

This site is mainly with people who in/had treatment or are nearing treatment, you are no were near that.

The use of this site for yourself is to see the good results that are occurring today, and know that in many many years when you reach a level that needs treatment you will be taken good care of.

Keep monitoring, your specialist is looking for Jumps, or changes, if this does not occur, and you don't need treatment, then you have nothing to worry about.

Welcome to the forum! The good news is you are here, where support is always available. You'll find that there are many who understand what you are going through because they have been through it themselves.

My husband was on W&W for 9 years and fortunately I found the forum earlier this year when he needed treatment. I find it very therapeutic and have learned so much, which helps a lot in putting things in perspective. The best antidote for fear is knowledge - the terrain of CLL is especially unfamiliar at the beginning so having access to the expertise and experience provided on the forum is especially helpful.

Big hug,

D.

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