Am I getting better or worse?

[Lorax59]

Hi everyone! I just returned from my oncologist appointment yesterday. My wbc count rose again from 195 to 217 in a month! Not bad considering It had been jumping up in higher intervals each time for the past few months. I’ve been taking a lower dose of Ibrutinib now for two months. How Can I tell the jump in wbc is from the Ibrutinib and not my CLL getting progressively worse? Nervous 😬

[Justasheet1]

Lorax,

How long were you on full dose ibrutinib. How long on a lower dose. Why did you dose reduce. What are your prognostic markers. Is this your first treatment.

Most if all, what did your doctor say?

It’s not a simple question.

Jeff

[Lorax59 in reply to Justasheet1]

Hi Jeff, A year ago I was on full dose Ibrutinib but dr stopped due to side effects. 9 months later Cll began rising so two months ago was put on lower dose. I have 13 q deletion.

[cajunjeff in reply to Lorax59]

I am pretty sure that cases of prolonged lymphocytosis often involve 13 q cll. My wbc took two years to normalize and it worried me early on when I saw others have their wbc normalize so fast. My doctor told me, consistent with some literature I later read, that persistent lymphocytosis is typical with 13q cll and not a bad sign at all.

[cajunjeff]

The most likely answer is that ibrutinib is doing its job and pushing lymphocytes from your lymph nodes into your blood.

What many people are surprised to learn is that prolonged lymphocytosis (excess lymphoctyes in the blood) is not a bad thing at all with ibrutinib. People who still have excess lymphocytes a year out do just as well or better than those who get to normal numbers early.

Resistance to ibrutinib as a first treatment is not common, your increased wbc is expected and way more likely due to ibrutinib working than it not working. Of course your doctor is best positioned to answer your question.

ncbi.nlm.nih.gov/pmc/articl...

[Lorax59 in reply to cajunjeff]

Thank you. Relief to hear. Yesterday I saw the nurse practitioner and she Wasn’t positive my numbers were from Ibrutinib or I was getting worse. The only clue we had to go on was that my lymph nodes were shrinking and causing less pain from tightness in my neck.

[cllady01 Former Volunteer in reply to Lorax59]

And that is a positive clue for its being the Ibrutinib .

[AussieNeil Partner Administrator in reply to Lorax59]

Shrinking lymph nodes dump their CLL cells into your blood, where they can take a while to die. Also check for improvements in your other blood counts, such as your platelets, haemoglobin and red blood cell counts.

Neil

[Lorax59 in reply to AussieNeil]

Ok. Next month. I did find out hemoglobin and platelets were in normal limits but will ask next time if they Have improved. We’re you tired when your wbc was high? I don’t know what to attribute my lack of motivation to, but I can’t get much accomplished through the day during this past month!! Geeze Louise.!

[AussieNeil Partner Administrator in reply to Lorax59]

My tumour burden was mainly in my spleen and nodes and while my lymphocyte count went up over 4 times my baseline count, it didn't get as high as yours, probably because I commenced Obinutuzumab/Gazyva infusions that quickly kill off CLL cells. There is no correlation between tiredness and WBC/lymphocyte count during watch and wait, which makes sense when you appreciate that CLL cells are active in our nodes and dormant in our blood.

However, like you, I have been extremely tired with treatment. I've been sleeping half the day and struggling with the sudden onset of fatigue when awake. That has slowly improved as my anaemia has reduced. I also need to remind myself that my body is dealing with 3 treatment drugs, plus an antiviral. Importantly, we need to appreciate that our bodies have to work at dealing with the dying CLL cells and making adjustments to shrinking nodes, spleen and importantly, repopulating our bone marrow with functioning stem cells. Patience, that tiredness will go away.

Neil

[Lorax59 in reply to AussieNeil]

Hi Neil

Thank you for supporting my claim of fatigue. I have a husband who thinks I should be exercising but I don’t feel up to it yet. Hoping that will come. What drugs are you on and can I ask what antiviral you are receiving and why you are taking it at this time?

[AussieNeil Partner Administrator in reply to Lorax59]

I'm on Acalabrutinib 2 x 100mg per day, Venetoclax 400mg 1 x per day and the antiviral Famvir (Famciclovir) 2 x 500mg per day. The latter is a prophylactic to prevent a Shingles outbreak. I stopped taking Allopurinol a few weeks ago, as my risk of Tumour Lysis Syndrome had become low.

I'm now able to walk to my blood test centre - about 2.5km/1.5 miles round trip. Last time I was able to do the full walk relatively briskly. That's a marked improvement from the smaller, slower walks I could do earlier, including one where I was really dragging my feet as I approached home and was glad to make it. You'll get there. Just gradually build up your physical activity as you are able. It's a very important part of helping your body better manage treatment.

Neil

[Lorax59 in reply to AussieNeil]

Thank you for the encouragement

[sweetromeet]

My dad was on 420 ,ie ,3 tablets of ibrutinib bt his body had reactions..so now he is on 1 tablet for past 16 days..his wbc went up and then relatively went low

[lindalou5]

Your case sounds similar to mine in that after being on IB for six months, my white count went up 65,000 in 8 days. I was on 280 dose because of bleeding issues, but I wondered too why it would go up after going down-minimally each month up till then. Did your doctor have any ideas??