Time to decide about leaving the time unlimited Captivate trial because of potential toxicity of ibrutinib (placebo vs ibrutinib blind)

[I282much]

Hi all,

My husband is in the initial 164 trial group of Non Time limited Captivate Trial. The trial design was Venetoclax ramp up and then ibrutinib until MRD. When MRD was achieved, a blind was set up for placebo vs Ibrutinib indefinitely, or until progression/toxicity.

Since MRD, we have settled into life again. However, the specialist feels that building side effects that he is experiencing are due to Ibrutinib. He suggested that we consider going off trial because TIME LIMITED THERAPY is becoming standard.

The Dr. and research assistant seem to think that there will always be another trial or drug to help if he takes an ibrutinib vacation and that he should take this time to have less pain to enjoy marathon running again.

During our “rest period” , I have done less research than I did eight years ago and am now faced with the potential concerns about financial toxicity and progression if he goes off of the trial. We have felt so blessed to have MRD and the safety net of free back up Venetoclax . We now have a lot to think about and research again.

Does anyone else have any similar experiences? I would love to hear how would or have processed this.

It’s just such a scary thought to start over again!

I apologize for the extended post, but, you guys always seem to have wonderful feedback!

L

[Skimom]

This site is inactive. Repost to the international group CLL support. I am sure that you will find a robust and welcoming group. Lots of experienced CLL patients. Diana

[I282much in reply to Skimom]

Sorry! Do you know how to repost it?

[Skimom in reply to I282much]

Hold down on your text, select all, copy and paste. I hope this helps. Diana

[Hoffy]

So they won't let him just reduce the dose? 2 pills per day maybe?

I am on Captivate and I think I am on Imbruvica as well,

What are the bad side effects?

Hoffy

[I282much]

Hi Hoffy,

He is on cycle 65 and now reduced to the lowest dose that the trial will accept. His main issue has been body pain and cramping. Blood pressure has increased and so has bruising . The bruising is only an issue because of his activity level…a slight bump at a rock climbing gym caused a large amount of swelling, bruising, bulges and long term pain to the affected arm.

He was a marathoner through diagnosis, watch and wait, and the first few years of the trial. His physical abilities have decreased and his body pain has increased.

His doctor seems to want him to be able to be more active again and believes that it may be the meds. He also told him that he really shouldn’t risk falls while on ibrutinib.

It’s scary to make a change. Not knowing the absolute reason for the issues and not knowing what would be waiting for us down the road….new trials… financial toxicity etc…

We will try to see a rheumatologist before our next three month check up to see if there are added reasons for the increased pain.

L

[AUSSIEMOMTN]

Can we make this site active? It seems like a cool place to hang out! Gatlinburg, TN here!Diagnosed this week.

🐻