Son diagnosed with Chronic Lymphocytic Leukemia,

[deters]

Update on my son , he had his blood work appointment a week ago , his WBC was 4.7 it's now 9.9, his hemoglobin is very good, platelet's are very good, bone and liver not so good, lit up in yellow, as caution, we are on a watch and see , and will be back in may for another blood test,.

[AussieNeil Administrator]

Good to hear that your son's hemoglobin and platelets are very good. You need to look at his lymphocyte count, not his WBC to check if his CLL is returning in his blood. His WBC can easily go up to 9.9 due to changes in other white blood cell types, such as neutrophils and eosinophils. The former can climb with an infection, even one your son isn't aware of and the latter can jump up due to allergy.

If your son's CLL does return early, there are now a range of non-chemo treatments available and if his specialist becomes concerned about their effectiveness long term, he has his youth on his side for a possible bone marrow transplant, though these are becoming less frequently performed due to the better treatments now available.

If treatment discussions are again raised, I would recommend your son seeking a second opinion. Is the Mayo Clinic in Minnesota doable?

Neil

[deters in reply to AussieNeil]

Lymphocytes are rising also but the doctor said it was due to the WBC ......

[AussieNeil Administrator in reply to deters]

It would be the other way around - the WBC is the sum total of ALL white blood cells, including lymphocytes, so a rise in lymphocytes increases the WBC. Importantly, your son's WBC is near normal. Its the internal nodes that will need to be watched, along with his platelets and hemoglobin.

[deters in reply to AussieNeil]

That's the explanation the doctor gave us. I know his wbc is normal, but any numbers that are climbing worry me as his mother.... I can't help but worry, and pray everyday that they find a cure for this and every cancer.

[lankisterguy Volunteer]

I agree with all that AussieNeil has said.

We certainly understand your concerns, and most of us have been in similar levels of high anxiety for at least one year after a CLL diagnosis.

I have had 6 rounds of treatments in the 10 years since my diagnosis, but all with 4 different non Chemo drugs so far. So I know the concerns and challenges of treatment.

It's great that your family physician and a nurse practitioner reacted and got prompt additional attention for him. With that level of local medical skill, you will likely find that adding a CLL Expert from a major research center will make future treatments and management of his CLL even better.

There is good clinical data showing that we CLL patients live years longer if we have a CLL expert on our medical team.

Since the Wisconsin experts are 1.5 hours or 2.5 hours drive from Denmark, WI, you may want to visit them only once per year and have your local team handle routine blood tests and exams, and arrange consultations with the CLL expert when treatment is being discussed.

The CLL Society doctor list

cllsociety.org/toolbox/cll-...

recommends these in Wisconsin

Julie E. Chang, MD, University of Wisconsin, Carbone Cancer Center, Madison

Ehab Atallah, MD, Medical College of Wisconsin, Froedtert Cancer Center, Milwaukee

Timothy Fenske, MD, Medical College of Wisconsin, Froedtert Cancer Center, Milwaukee

Len

[deters in reply to lankisterguy]

Dr Atala, is on his team.

[Hoffy]

CLL Society web site is very good,

Keep learning

Clinical trials I think have the best options,

Hoffy