My white blood cells are 65.3. My oncologists wants to put me on imbruvica 420mg. I really don't want to, I feel fine. I need input on this.

[Rottie1934]

My white blood cells are 65.3 my oncologist wants to put me on imbruvica 420mg. I feel fine & see no need for imbruvica. I need input please.

[Seok]

Hi Rottie1934

Wonder what’s the reason your Dr decides to start treatment? WBC of 65.3 isn’t alarming. What’s your hemoglobin and neutrophils levels? I started taking IB when my hemoglobins went below 10.

[seelel]

If you feel fine then don't do anything you don't want to do.

You may be needing an opinion from a CLL specialist as there is a possibility that the Oncologist isn't up to speed on CLL. Oncologists are generalists and not specialists.

But your haemoglobin, platelet and neutrophil levels may have been on a downward trend.

Let us know some numbers.

[AussieNeil Administrator]

Definitely time to seek a second opinion. Given you are US based, I recommend the CLL Society's Expert Access program:

cllsociety.org/cll-society-...

Meanwhile read this post:

healthunlocked.com/cllsuppo...

You'll read there it is the rate of change of your lymphocyte count (part of your WBC), not an absolute value that is one trigger for starting treatment.

Let us know what happens.

Neil

[Rottie1934 in reply to AussieNeil]

My red blood cells are 65.3, hemoglobin 12.0 , platelet count 138, neutrophils 1, lymphocytes 94. I don't know my alc.

[AussieNeil Administrator in reply to Rottie1934]

Lymphocytes = ALC provided you are quoting numbers, not percentages. Forget percentages with CLL. The high lymphocyte count distorts percentages.

Your low absolute neutrophil count is the concern, but as you should have read by now, is NOT a reason to start treatment.

Sorry, I don't understand your red blood cell count, which should be around 4. Your haemoglobin count is more important and that's fine.

Nodes and spleen sizes okay?

Neil

[Rottie1934 in reply to AussieNeil]

Yes, my nodes & spleen are ok. My red blood count is 4.05

[AussieNeil Administrator in reply to Rottie1934]

That RBC count makes more sense.

In your shoes I'd be seeking a second opinion from a specialist that sees a LOT more people with CLL than your current specialist. If convenience is your primary reason for staying with your current specialist, you might be able to do what some of us do - see the experienced CLL specialist perhaps once a year and get your local oncologist referring CLL specific matters to the CLL specialist.

Neil

[Hidden]

whats your trend and doubling rate?

[JigFettler Volunteer]

In agreement with the above replies.

What is the reason, nay, the rationale, for treatment commencement?

I agree with AussieNeil - a 2nd opinion at treatment decision time is essential. Unless you are already under the care of a known CLL specialist.

The decisions around treatment options are so complex now - unbiased opinion by a super informed Doc is very important.

Best wishes at this really important phase of your CLL journey.

Jig

[Billhere]

Like Neil says, definitely time for a second opinion. The white blood count level is not the basis for treatment decision. It is improbable that any competent hematologist would be recommending treatment because of a total white blood cell count number. as you are reading there are a variety of other blood cell variables that together point towards the need for treatment. I suggest you make a return appointment to your hematologist, share your concerns and ask for the broader picture that is leading to the treatment recommendation.

happy new year and let us know how it goes!

[GMa27]

Agree... second opinion.

I felt great at the time treatment was needed for me. Blood tests and BMB can help determine if you need treatment. 💕

[bachplayer13]

its not always about doubling rate or wbc or hgb/hct. none of those quantities are horrible for me and i'm starting it tomorrow. my mutations and markers put me at high risk for richter's transformation. the only hope of avoiding that is to try early treatment in the hopes of avoiding the clonal evolution that would be the end for me if it evolved in to a richter's my doc at md anderson told me i'd need treatment soon and we decided together that it might be best to get started. to say i'm not scared it a lie. but intellectually i understand its the best option for me.

[lindalou5]

I wish that I had started treatment months before I did. I kept putting it off for the fear of it. My numbers were not good, swollen nodes and spleen, but I felt OK. I have now been on IB for five months and it has been rough. In my own opinion, if I had started earlier (treatment was indicated for me about six months prior) I likely would have had a better and faster recovery of the numbers-and maybe less harsh side effects. The specialists actually had said that it would be better to start while I was still feeling OK.

[farber]

Hold on Imbruvica, I was taken when I had 137.

[Hidden]

If you are having no other symptoms (extreme fatigue, night sweats, etc.) doesn't seem to me like treatment would be indicated. I've been on W/W for 7.5 years now and my WBC at diagnosis was 17.5K; now hovering around 130K. High WBC on its own should not be a reason to start treatment. I've heard of people getting up to 500K w/o treatment. If I were you, I would consult with a specialist. Good luck!

[livinglifewell]

Second opinions are not to be treated lightly, they are worth their weight in gold. And as a follow up to that, I think our treatments should be symptom driven as opposed to numbers on a page.

[Ginajetta]

I think it’s best to get another opinion for sure from CLL specialist. If you are feeling well and other counts seem good and no symptoms of fever and night sweats most likely not ready to start treatment. I know everyone is different but I was in similar situation. Decided get second opinion with Dr Rai The Godfather of CLL. He said wait no treatment yet. My WBC at the time was around 65,000. So I went several years before starting Imbruvica in september 2018.

[Lisa-1959]

I felt fine, but my local oncologist started me on Imbruvica because of 2 hospitalizations (double pneumonia then food poisoning that didn't want to go away), an enlarged spleen (22.5 cm), and a low IGG. (My WCC was ~85.) When the Imbruvica started causing me more issues than my local oncologist was comfortable with and decided to take me off the med, my husband and I made the decision to go to MD Anderson for another opinion.

I point blank asked the CLL specialist if my local oncologist had jumped the gun on starting treatment...especially since I felt fine. He said he could understand why that decision had been made, but after running the battery of tests, he said he would have opted to wait a little longer. However, since the treatments had been started, he put me on Venetoclax which I started in January 2019. As of a return visit in October 2019, I am in "remission". Hurray!

If I had to do it over again, I would have gotten the 2nd opinion before starting treatment, so I am just echoing what everyone else has said!