Ibrutinib - has anyone else's improvement stalled?

[Graham2222]

Hi everyone. I've been on Ibrutinib since last October, and the improvement in all components of my blood count has been terrific. My ALC, for example, reduced rapidly and consistently from 252 to 25 six weeks ago. (Normal is under 5).

Today, however, I was slightly disappointed to find that the ALC had remained at 25. I do not have any infections or complicating factors, to my knowledge. My consultant seemed a little perturbed by this, but was unsure as to why it might have happened.

I am due back in three months. Has anyone else on Ibrutinib experienced a temporary or more permanent stalling of this nature?

[MJN44]

Hi there

My husband has been on Ibrutinib for about 10 months. His count has gone from about 280 to 40. In the first six months it decreased rapidly, then remained almost unchanged for two months. In the last two months it's only dropped slightly (it still equates to about 10-15% though).

His specialist said it wasn't unusual for this to happen.

Are you planning to have a transplant when your results come back into normal range. My husband is going to have one in May.

All the best

[Graham2222 in reply to MJN44]

Many thanks for that mjn44. It's reassuring to hear from folk in similar positions.

I'm not planning on a transplant. At least not yet. But I'm interested: why would your husband need a transplant if his blood and marrow readings had returned to the normal range?

Best wishes to you and your husband.

[MJN44 in reply to Graham2222]

My husband has 17p deletion and his two specialists aren't confident Ibrutinib will continue working for him. Apparently if it stops working the situation is often not salvageable. He is 48 and they think a stem cell transplant is the best option. It's a worry as not many people seem to be advised to go down this path. Are you on Ibrutinib indefinitely?

[Graham2222 in reply to MJN44]

Yes I am on Ibrutinib indefinitely until either progression (ie it stops working and the disease begins substantially to return) or I choose to try a new drug that is potentially better.

We are all different, of course, but I would myself seriously question something as radical as stem cell replacement if all other signs were reasonably good and not deteriorating quickly. Sticking at 40 doesn't seem too bad on its own if any other symptoms are manageable.

Others more medically qualified or experienced may be able to offer a view?

[Granny12 in reply to MJN44]

I am on ibrutinib and blood counts normal my doctor is not pushing for transplant but a donor is line up and I'm also 17p del im just concerned about waiting but I'm doing so good now been on meds 2 yrs in April but was told if I beco resistant to it transplant is the next step .

[ThreeWs in reply to MJN44]

Hi MJN44,

Since your husband has a specialist it may mean that where you are located, he might not have access to some promising salvage therapies that are being used in Trials in the US. This lack of access to the KIs (Kinase Inhibitors) Ibrutinib and Idelalisib just a couple of years ago was the unfortunate cause of premature deaths to those in the US who could not get KI access for lack of approval.

Your husband's relative youth with poor markers is certainly a legitimate concern. If he needs to take the HSCT path, it is hoped that all new drug options were well explored and he that has a very well matched donor.

May his path be well chosen,

WWW

[mchilds]

I just began Ibrutinib and my lymph nodes were gone in 4 days...however I have the Notch1 mutation and I'm starting rituxan infusions in April. Does anyone have any advice on any of this? I'm 59 , still working and in pretty good health.

[ThreeWs]

Hi Graham222,

I have been on Ibrutinib for 44months and during that time I had two periods of distinct stalled or plateauing ALC. One at ~50k for several months and one at ~7k for a couple of months. It took me over 3.5 years to reach a numerically normal ALC. Since then it has continued to decline BUT the cell population assessed by flow cytometry reveals a clonal population of CLL cells in spite of normal count.

If you happened to be 17p- and you begin a sustained upward trend in ALC or node enlargement you may have one of two mutations that can restore pathogenic signaling. Remember that at a numerically normal ALC you might be having your counts affected by an infection response. Normal ALC is a fluctuating range between 0.8 and 4.8

WWW - ALC 3.94 last Jan. 5th with all time high 319.6

[Graham2222 in reply to ThreeWs]

Thanks 3Ws - helpful data.