Follow up to static dilemma

[annmcgowan]

Hi in follow up to my last post regarding my dilemma over whether I should move from the flair trial to the static trial. I saw my haematologist today and I have decided to do static. He reminded me of what he had said on many occasions that research and real world experiences suggest you get the best outcome with your first line of treatment. As this is ibrutinib for me the best way ahead is the static trial.

He explained that as I have been in clinical remission for a number of years I will be randomised to one of the two arms, continuing ibrutinib or pausing ibrutinib. The criteria to go back on to ibrutinib would be changes in my bloods rather than disease progression which would be the case off the trial. This fact plus the fact many people off ibrutinib remain well for 2 years or more and that static it is what my consultant would recommend for me given my CLL journey enabled me to feel secure moving ahead onto static.

Thanks to everyone who replied to me while I was struggling to make this decision. I hope sharing my decision and the reasons why I have made it will help others in the same or a similar position.

Good luck to all

Ann

[Graham64]

Hello Ann. I'm in the same situation as you. Just paused ibrutinib on the flair trial. Not sure what happens next, although static has been mentioned. Could you possibly send me a link to your last post as I must have missed it. Thanks. Graham

[Graham64 in reply to Graham64]

Don't worry Ann. I just found it.

[annmcgowan in reply to Graham64]

Hi glad you found it hope it helps.

Ann

[Newdawn Administrator]

Glad the decision has now been made Ann as I know it’s something you’ve agonised over. Hope all goes well and your remission continues without the need for any treatment at all in the near future.

Newdawn

[annmcgowan in reply to Newdawn]

Thank you Newdawn it is a relief. Hope your recovery from Covid is continuing and end soon.

Ann

[Peggy4]

Good that you’ve made your decision Ann. I wish you all the best.

Peggy

[annmcgowan]

Thank you Peggy4.

Ann

[Poodle2]

All the best. Never an easy decision when treatment comes up. ❤️

[jkl700]

Hello there. I am struggling re joining STATIC. Have been on Ibrutinib for 6 years now. Would like to come off it. Muscle pain, depression? But apparently you can't simply stop. I am on 140 mg. If you were in remission for two years what was wrong with your bloods that you were recommended to go on Static? My bloods are all fine, but it is not good to stay on Ibrutinib longer than 6 years. Anxious to hear from you. If interested, please see my much longer post today after talking to the coordinator of Static. I will be talking to my consultant on Thursday. Thanks.

[annmcgowan in reply to jkl700]

Hi just picked up your post. I am still on ibrutinib go on to static later this year. You can stay on ibrutinib for more than 6 years. I may be allocated the remain on ibrutinib arm if static. I believe you can choose to come off and stay on w & w on NHS and still be in static. Let me know what your consultant says.

Good luck

Ann