2+ years on Ibrutinib and a question

[andrew1]

I was diagnosed with CLL 15 years ago at age 49. Four years later I developed a Richter's transformation (Hodgkins) that was successfully treated. My early experience with Ibrutinib was nothing short of miraculous. The palpable nodes in my neck and axillae shrank dramatically. As expected, my white count rose precipitously, but has gradually declined over the past two years until most recently. Over the past 3 months it has risen from 25k to 44k with 90% clonality, i.e. CLL cells. There does not appear to be any enlargement of my nodes and I feel fine. I realize that I am, relatively speaking, an early user of Ibrutinib, but I was wondering if any others have experienced a significant rise in their WBC after 2 years of decline and what if anything is an appropriate way to address it? Thanks for your response.

[Cllcanada Top Poster CURE Hero]

Hi Andrew

Generally, if it is determined that ibrutinib has failed they move you to another inhibitor... often Idelalisib (Zydelig), or a clinical trial for venetoclax or something... you might try for venetoclax 'off label' since it is only approved at the moment for 17p deleted, but that should change to all second/third line very soon.... in the U.S.

There is also a clinical trial for Imbruvica (ibrutinib) failures and they are using another BTK, acalabrutinib (ACP-196).

~chris

[andrew1 in reply to Cllcanada]

Thank you

[Berrytog]

Good morning Andrew

It would seem that Ibrutinib has failed for you but nowadays there is a lot more in the medicine cupboard. We all live with the worry of failure of the product, there is no cure at the moment but all we need is to get to the end naturally. I have been on it for three years and my WBC is 4 and Lymphocyte count 4 but every time I go for my check up the worry is still there. THe last time they said I must watch my WBC as it is still normal but now on the low side!!

[AussieNeil Administrator in reply to Berrytog]

If your WBC and Lymphocyte count are both 4, then you have no other white blood cells, which importantly means you have no neutrophils, which fight off bacterial and fungal infections. I hope you've made a mistake? If not, you need to be extremely careful to avoid infections, including being careful with your diet.

Are you able to reassure me?

Neil

[Berrytog in reply to AussieNeil]

Hi Neil

Thanks for your interest and reply, it seems your knowledge is valued by all of us on this path and you probably have a better understanding than most of our consultants

I have just fished out my last results from 6th July as I noted for the first time a comment which was under my lymphocytes score although previously is was higher than now " MILD LYMPHOCYTOSIS PLEASE MONITOR".

THe results read as follows for the full blood count:

WBC 7.48

RBC 5.33

hb 152

PLT 119(low)

Neutrophils 2.92

Lymphocytes 4.08 (high)

I understand that the ALC is obtained by multiplying the WBC by the Lymphocytes. I have to say that I was reasonably impressed as my last WBC was 10 .2 but My GP yesterday when I visited him was also concerned when I told him my WBC was 4.8 which was misread by me as it was my Potassium level at the top of the page usually reserved for my WBC. Nevertheless he gave me some antibiotics for a mild cough/throat irritation that I had had for four weeks without going away. In defence of my immune system last week I was attacked by a swarm of wasps and stung five times but after three days all seems well.

Thanks once again for your interest, I look forward to your comment on my last results which are now every two months.

BT

[Cllcanada Top Poster CURE Hero in reply to Berrytog]

absolute lymphocyte count (ALC) = WBC X (the percentage of lymphocytes as a decimal... XX%/100)

This effectively removes the neutrophils from the WBC, and leaves the B, T and NK cells...

Counts bounce up and down a lot, once the absolute lymphocyte count (ALC) gets over 30K, then hemetologist will track the progression over time more closely, looking for a lymphocylte doubling in under six months... called LDT.

At this point B symptoms are more closely followed , perhaps a CTscan, along with absolute lymphocyte count (ALC), and might trigger a pre-treatment discussion, but lymphocyte counts by themselves should rarely be a sole factor in treatment...

Unfortunately this is not always the case, that is why a CLL expert is in everyone's best interest. 😄

[AussieNeil Administrator in reply to Berrytog]

Great results Berrytog. You have a very healthy level of neutrophils and your ALC/ lymphocyte count is only just above normal. Ibrutinib is working very effectively for you .

[Berrytog in reply to AussieNeil]

Thank you Neil, you have made my day, let us hope that it stays that way. I t has taken three years all but one month. I feel that I am one of the lucky ones as I had no previous treatments and have experienced no symptoms other than the brittle nails and muscle/joint pain in the early days, even the muscle cramps seem to be occasional now,

[andrew1 in reply to Berrytog]

Brittle nails are my life. I am trying Biotin and some questionable fluid application. No good news to report as yet.

[gardening-girl in reply to andrew1]

andrew1, after suffering for months with split, sore nails, most likely a side effect of ibrutinib, at the recommendation of a guitar-playing friend, I now have acrylic nails. The acrylic was painted on over my split nails. No more pain, no more tape, no more band-aids! You might consider trying it.

gardening-girl

[andrew1 in reply to gardening-girl]

Thanks. I'll give it a try. I've been using a clear nail polish called "hard as nails." How long does the acrylic last?

[gardening-girl in reply to andrew1]

The acrylic grows out along with the nail. It doesn't wear off. If you care what your nails look like you might want to get the bottom portion "filled in" every two weeks depending on how fast your nails grow. I don't care how my nails look and will probably go 5 or 6 weeks before filling in. As your nails grow you can file them off to the desired length with a special file. Previously I also tried nail polish and it didn't help at all.

gardening-girl

[joanne17 in reply to Berrytog]

My number are almost identical. Took a few months but I'm feeling good now that my BP is under control. Dislike taking 2 BP meds.

[lankisterguy Volunteer]

Hi Andrew,

I had nearly the same experience on Idelalisib. after 24 wonderful months with no elarged nodes or spleen, a MRD test indicated 0.08% Cll, but at 30 months it rose to 20% and my ALC began to climb.

An immediate switch to Ibrutinib slowed the rising ALC but a painful skin rash side effect caused me to stop after 9 months.

I am now in my second month with Venetoclax off label and my WBC and ALC are at the low end of normal ( they dropped from ~ 110k to normal in one month).

Len

[Justasheet1]

Len,

I don't remember if you had considered a trial with Acalabrutinib before the Venetoclax.

I was wondering what Dr Furman's thoughts would have been.

I'm so happy to hear how well you are doing and tolerating the drug so well.

Jeff

[andrew1]

Again, thank you all for your generous sharing of your knowledge and experience.

[andrew1]

AussieNeil,

Actually my name is Neil. Since you've already taken it I will go by Andrew 1. Or, you can call me USNeil.

[moments]

I've been on Ibrutinib for CLL for nearly 3 months. My oncologist said my WBC and Lymphocytes would either go up or down and that both is normal. My WBC has gone from 125 to 12.8 and Lymphocytes 117 to 10.9. Also my spleen was fully enlarged and after only 1 month it was down significantly. However, my neutrophils are now low. I'm in Canada and it would appear our measuring is different but you can see the difference.