Anyone 13 del Igvh mutated on Ibrutinib

[Lindab127]

Is there anyone out there that has 13 del igvh mutated and chose Ibrutinib for first line treatment? If so how are side effects and is it working

[baq724]

I am 46, 13q and mutated. Diagnosed in Oct 2016. No treatment. I used to be in the FCR camp, but the more reading I do, I am not so sure. Most cases of 13q and mutated are of a very slow progressing nature and usually respond well to therapies. I visited MDA and Dr. Wierda said FCR would be the standard for me, but there were other great options if I chose otherwise. I am thinking now that since I am young, I would choose something that wasn't so toxic and cause irreversible damage To my narrow. Fortunately for me, medical science seems to be progressing faster than my CLL. I am most likely many years from treatment. If I were you, I'd strongly consider a clinic trial of a novel agent / combination.

This interview really made me think... lots of varying opinions.

youtu.be/-eJhDFbEIYY(Not working as expected?)

Good luck to you!

[Lindab127 in reply to baq724]

Thank you. Each time I watch this I get more out of it. I hope you have many years of watch and wait.

[tesoro5858 in reply to baq724]

Thank you for posting this. It was well worth the time to view it again to remind me why I, like you, are less firmly in the FCR camp. Dr. Furman clearly states his rationale for avoiding chemotherapy and has me convinced of the uncertainty of potential damage to the bone marrow 20+ years out, something that younger patients need to consider if they are expecting to live a normal lifespan with CLL.

[Kvb-texas in reply to baq724]

Hi Linda... I noticed this post is a few years old, but wanted to check to see how you are progressing. I too have the same exact markers and just started a combination treatment of Calquence and Gayzva (ibinutuzumab) in Sept 2021. After 3 months... WBC, ANC, RBC, HGB, Lymphocytes all in normal range. Zero side effects from medicine. The only thing outside of normal is platelets at 87. I am 58, by the way.

[baq724 in reply to Kvb-texas]

I saw my specialist in MD Anderson in January and my blood counts were exactly what they were three years ago. My ALC is at 26. My doctors think I could be as much as years away from treatment. Maybe more. They have some kind of predictor algorithm. I am back tonight as a boosted but had Covid last week. It was very mild and I am back to normal now. All of my blood counts were normal except for a high creatinine count and my alc. I just turned 51 in July! Glad your treatment is going well!

[Kvb-texas in reply to baq724]

Great to hear. That's great that you may be years away from treatment. There are really incredible advancements occurring every few years. Glad the COVID was mild. Hope all continues to go well for you.

[baq724 in reply to Kvb-texas]

I just now noticed you were replying to Linda before. At any rate, best of luck to you and I hope this treatment works for you.😀

[Lindab127 in reply to Kvb-texas]

Hi there. I am actually still on Watch and Wait and doing fine. Have't needed treatment yet. My WBC goes up and down. Other counts are mostly within the normal range. The highest WBC was 195K. I had Covid a year ago and my WBC went to 39K. Its been slowly going back up. Last check 3 months ago was back up to 125K. I'll find out next month where I'm at. At the time i first posted, i was told I'm getting close to treatment. I was offered FCR but I said no. Glad i didn't agree.

Sounds like you are doing well. Glad to see that.

[nkferg]

Another of the big questions that will hopefully be answered with current trials. I hope many of patients with those genetics can wait out the results.....