What to watch to indicate treatment?

[Butterfinger77]

I am probably just terrible at searching but I can't find anything! I read it's not wbc, it's not alc, it could be symptoms, it might be.... WHAT is it that doctors look at in the blood to help them decide to treat? I understand it's not one, it's a trend. If this question is not allowed feel free to delete or I can figure out how to delete. I've just been watching my numbers get worse quickly in the 3 months or so since diagnosis. I have quite a bad time with fatigue and a few other things. I started with a wbc at 30,000 it's now close to 40,000. I realize that isn't that high. alc went above 30 in December. I appreciate any answer and thank you for patience while I learn how to navigate this site. I'm in the US.

[Newdawn Administrator]

Hi Butterfinger,

This is a perfectly good and important question. This guidance from the CLL Society is very helpful in explaining the indicators doctors look for before initiating treatment;

cllsociety.org/2016/03/cll-...

‘B Symptoms (there are no A symptoms)

Weight loss >10% of body weight in previous 6 months

Severe fatigue (ambulatory and capable of all self-care but unable to carry out any work activities

Fevers >38°C for at least 2 weeks without evidence of infection

Drenching night sweats for more than a month without evidence of infection

Evidence of progressive bone marrow failure manifest by low blood counts (cytopenias) including anemia (low red blood cells) or thrombocytopenia (low platelets)

Massive or symptomatic splenomegaly (enlarged spleen)

Massive lymph nodes or clusters of nodes (>10 cm) or progressive or symptomatic lymphadenopathy (enlarged lymph nodes)

Autoimmune Hemolytic Anemia (AIHA where the body attacks its own red cells) and/or Immune Thrombocytopenic Purpura (ITP where the body attacks its own platelets) that is poorly responsive to steroids or other standard therapy

Rising ALC with an increase of more than 50% over a 2-month period or a lymphocyte doubling time (LDT) <6 months. If ALC is <30,000, LDT should not be used as the only criterion for beginning treatment.

The last indication for treatment, namely a rapidly rising ALC is controversial.

Please note there is no absolute level of ALC that demands treatments.’

Hope this helps.

Newdawn

[Skyshark]

ALC has to double in 6 months or increase by 50% in 2 months.

Fatigue has to be debilitating.

See the inset on the RHS of this page.

uptodate.com/contents/image...

I believe that for IgHV mutated with TP53/17p aberrations that the short duration treatments are preferable, just as they are for IgHV mutated without TP53/17p aberrations.

[cajunjeff]

The easiest things to watch for most lay people not familiar with cll and med speak to indicate when treatment for cll is needed are lymphocytes, hemoglobin and platelets.

Lymphocytes are the type of white blood cells we have with cll that are cancerous and grow abnormally. If they double within six months, treatment can be indicated.

Hemoglobin is a protein in our red blood cells that carries oxygen to our organs. Excess lymphocytes can sort of crowd out hemoglobin. Normal ranges are about 13 to 18 for men, 12 to 15 for women. Hemoglobin below 10 can be an indication for treatment. At that level we can start to feel anemic and tired as our body loses oxygen.

Platelets are blood cells that help clot blood so we don’t bleed out from wounds. The normal range is about 150 k to 450 k. Lymphocytes can crowd out platelets too. Platelets below 100 are an indication to treat.

There are other things to look at, but I find these three the easiest for most to understand and follow. As a practical matter, our treatment indicators usually move somewhat in tandem such that when lymphocytes go up, platelets and hemoglobin go down.

I don’t know if thats the type info you were looking for, I hope it’s helpful to you.

[Smakwater]

Butterfinger,

Newdawn has provided you the best patient informative resource for treatment measures. In addition, below are links to the diagnosis and treatment Gatekeepers -

nccn.org/patients/guideline...

ashpublications.org/blood/a...

jnccn.org/view/journals/jnc...

JM

[larrymarion]

Butterfinger77, you've gotten great guidance from real pros at this site. What Newdawn, cajunjeff, and others described as the key indicators provide an excellent framework for the treatment decision.

Let me add one other way of looking at the question--veteran hemocs will tell you that they treat the patient, not the numbers. That means they look at the patient's physical situation. Night sweats, size and number of lymph glands, fatigue, etc. should be considered in addition to doubling times and other math metrics. My own experience has some examples:

my numbers, after five years of W&W, were about half way to the trigger points used 15 years ago. and my nightsweats were hardly consequential. While i had moist t-shirts or pajama tops when i woke up, my hemoc at that time said he had other CLL patients who had to change their sheets at night because they were soaked.

However, a lymph gland in my throat had swelled to the point that swallowing bulky foods was difficult. I was choking each time i ate a bagel. After getting a second and third opinion from CLL experts, i began treatment to get rid of the lymph gland in my throat.

Good luck.