CLL

[Healthyasahorse]

I have been on Imbruvica for two weeks and really not feeling much better. My spleen is so enlarged that I look 6-7 months pregnant, at 68! My last week labs had my WBC at 204.6 with lymphs at 194.5. Do not have many large lymphs only spleen. Anyone else on Imbruvica with similar systems, if so how long before things started getting better. I am so tired of not feeling well!

[Hidden]

Hi Healthyasahorse

I wish I could give you encouraging news, but I have never been in your situation. I just responded as I did not want you to think no one cares. Pretty sure someone will write soon who has something more positive to contribute. I can well understand that you are tired of always feeling unwell. It is so hard sometimes.

I hope you see an improvement very soon. Best wishes Bubnjay

[Healthyasahorse in reply to Hidden]

Thank you for your concern. God bless.

[AussieNeil Administrator]

Hi Healthyasahorse. In your case, while you are no doubt very disappointed not to be feeling much better, particularly given many starting Imbruvica do promptly report feeling the best they have for ages, I'd say slow and steady (with much patience) is a good way to proceed, given your high tumour burden. With your much enlarged spleen and quite high lymphs (ALC), you don't want those to melt away faster than your body can deal with the dying B-cells. I expect to hear a much more positive report from you in the next few weeks.

As Lab_Rat shared with you earlier, with Imbruvica, it takes much longer to see a drop to near normal levels than with chemotherapy. I expect that you also know to expect a rapid climb in your ALC initially, as the B-cells are flushed out of your spleen and elsewhere into your blood.

Hang in there!

Neil

[Healthyasahorse in reply to AussieNeil]

Thank you so much and God bless you.

[AussieNeil Administrator in reply to Healthyasahorse]

Healthyasahorse, Susan O’Brien's presentation at the 2014 American Society of Clinical Oncology Annual Meeting noted that the median time for patients on Ibrutinib to first response was 1.9 months, with a range of between 1.4 and 23.2 months. The median time to best response was 7.3 months, with a range of between 1.7 and 31.8 months.

So, it is still very, very early days for you, though I hope you don't have to wait anywhere near two years!!

Neil

[bkoffman CLL CURE Hero]

Too soon to know. The ALC is no help in knowing how you are doing with Imbruvica. Nodes often respond very quickly. The spleen could be slower. Brian

[Mikey47]

Be patient, Healthyasahorse. My enlarged nodes in neck, axillae and groin disappeared quite quickly, within a few weeks but it has taken a year for my blood counts to return to normal.

I also had a heavy tumour burden (11q- ) in abdomen, chest and on my spine such that it was feared that I had a high grade lymphoma. Fortunately, it turned out not to be after a PET scan. A CT scan on Thursday will reveal what remains of that burden.

As has been pointed out, it's early days for you. Sorry to hear that you are not feeling so well. I'm sure that will change before too long.

I hope you are staying well hydrated while on the drug. Keep us informed as to your progress.

[charliegirl]

Dear Healthyasahorse

I am sorry you are having such a rough time. With ibrutinib appearing to promise so much it is hard not to expect too much too soon. I've been on it now for nearly 7 weeks. My clinical situation is different to yours - lower tumour burden with my spleen only slightly enlarged, and TWC only around 100,000. I felt lousy for the first three weeks or so with nausea, loss of appetite. and very tired. Since then I have gradually felt increasingly well (though it's not always easy to know whether this is due to having felt so unwell before, or due to a real improvement in terms of diminished disease). I am keeping my fluid intake up to at least 2 litres a day and the modest lymph nodes in my neck have shrunk.

As it is such a new drug clinicians obviously have less experience of how it will affect individuals when they start it. It helps so much to know what one may expect. In my case I was simply told to drink plenty of fluids, that I might have some diarrhoea, and to come back in two weeks for review and bloods. I wasn't therefore prepared for becoming sufficiently unwell on day 2 to require hospital admission.

I sincerely hope that you will begin to feel better soon and wish you all the very best.

[Healthyasahorse in reply to charliegirl]

Thank you for your help. I am starting to feel better in the mornings and find I can get a few things done. Had labs yesterday , my ALC is now at 235 from 194 a week ago. So I continue with weekly labs. My Dr. Did order compazine for nausea. I am his only patient on Ibrutinib so our plan is to see what things look like in 4 weeks, with weekly labs. It was so nice of you to text. I think it helps knowing what others are experiencing. Thank you.

[Hidden]

Hi Healthyasahorse

It sounds as if you are beginning to turn the corner to feeling better. So pleased for you.

Do keep us posted.

Best wishes

Bubnjay

[thayer]

I have been taking 3 caps. for 4 weeks. I have energy in the AM. The PM it's lower. Before starting the RX, my white cells were 165K with lymphs somewhat lower. In 2weeks, I will have blood read & hope for lower values. Thayer