13q, now 11q too!

[Kokobean]

A recent FISH REVEALED MY HUSBAND ALSO HAS 11q now. Any thoughts on treatments?

[cajunjeff]

If he has 11q he also is likely unmutated IGHV as well. I think single agent ibrutinib is an easy and safe choice for him. If he wanted to do a trial, just about any trial involving ibrutinib, without chemo, would be a consideration, particularly any combination of ibrutinib and venetoclax.

Ibrutinb works well with 11 q and will quickly shrink his nodes. It’s a pretty good choice for most anyone with Cll starting treatment. Good luck. Jeff

[Cllcanada Top Poster CURE Hero]

Generally the 11q takes precidence over 13q in treatment choice... but the actual numbers or percents matter a lot.

It does show some genetic instability... so something like Imbruvica (ibrutinib) would be possibly the best choice first-line.

~chris 🇨🇦

[Kokobean in reply to Cllcanada]

Thank you! We are waiting to see what the specialist says about mutated status. We will have to see if there are any trials he can get into.

[Kokobean in reply to Cllcanada]

Thank you. Waiting on the specialist but this is helpful.

[kc1953 in reply to Cllcanada]

Chris,

As you probably know my prior posts here, I’m unmutated 13q and 11q deleted also. Had first round BR treatment 3 1/2 years ago and remain in remission today. What did you mean by and what are implications of “genetic instability”? That over time I have a higher risk of acquiring other chromosomal mutations such as 17p -? Thanks for all your support to this community.

[Justasheet1]

Koko,

From looking at your profile, your husband has had a CLL diagnosis for nearly 4 years now. What trials and treatments are available to you financially speaking and or logistically? What are his thoughts?

I’m also 11q and 13q. I like combos myself.

Jeff

[Kokobean in reply to Justasheet1]

The specialist said if he is unmutated then chemo is out and it would be imbrutinib. If he is mutated then FCR or imbrutinib. We liked the idea of non-chemo, but the high cost of imbrutinib for years could be risky. We are self employed and buy our own insurance. He may not have a choice though.

[Justasheet1]

A clinical trial might be an option because it will give you the meds for free.

Also, not my recommendation but I had a 4 year remission from Bendamustine and Rituxan. I am unmutated.

Jeff

[Ellieoak]

I was diagnosed in 2002. 11q & 13q. W&W till 2011. I did chemo Bendamustine for 6 mo. In 2014 I went on Imbruvica. That finally stopped working 6 weeks short of 5 yrs. Now I’ve been doing Venteclax. So far so good. Good luck , Anna

[Kokobean in reply to Ellieoak]

Thanks for that encouragement. For some reason his W&W wasn’t very long (3 1/2 years). The new treatments seem to be working well for many people so I hope that is true for us.

[Justasheet1 in reply to Kokobean]

My W&W only lasted 2 years. Everyone is completely different.

[Newdawn Administrator]

This article, taken from the result of 3 randomised studies, is important in highlighting why 11q patients respond well to Ibrutinib;

bloodjournal.org/content/12...

Newdawn

[LovecuresCLL in reply to Newdawn]

Thank you newdawn for another great find

[larrymarion]

i have 11q, unmutated, complex karyotypes, diagnosed 2005. had PCR in 2010 which only gave me 2.5 year remission. then had BR. Note that some research says that BR is not totally effective against this combination of factors. Specifically, BR sometimes won't knock down bulky nodes for patients with 11q, etc. So I went on ibrutinib in 2014. bulky nodes disappeared within 3 weeks. had difficult side effects with Ibrutinib for the first six months. If you take ibrutnib make sure you discuss side effect warnings with your hemoc. one biggie--ibrutinib activates viruses. I ended up in the hospital for weeks with horrible mouth sores. took 6 weeks to solve the problem, with lots of intravenous gamma globulin.

but after that initial period all is well with ibrutinib.

another caution--a small percentage of patients suffer progression with ibrutinib. CLL may come back. If so, then venetoclax to the rescue.

And good luck with the cost of ibrutinib. Financial toxicity from the drug is the worst side effect, by far!

[DriedSeaweed in reply to larrymarion]

Ibrutinib activates viruses?

[larrymarion in reply to DriedSeaweed]

yes, it does. i was told virus activation is a relatively rare side effect of Ibrutinib. Within a few weeks ofg starting on Ibrutinib i was hit with warts on my hands and didn't alert my hemoc since i didn't know that warts are virus based. Then contracted cocksackie virus, multiple large mouth sores, which werehorrible. For several months i couldn't eat or talk, lost 20 pounds in a few weeks. it took a lot of time and a lot of specialists to determine which virus had attacked me and how to treat it. lots of gamma globulin did the trick.

[DriedSeaweed in reply to larrymarion]

I just confirmed this with NIH today.

Sounds like dormant viruses can activate. I suppose that is why shingles is of so much concern with CLL.

[larrymarion in reply to DriedSeaweed]

agreed. wish health agencies and drug stores could prioritize shingles vaccine for ibrutinib users. i've been on waiting lists at area drug stores for months.

[kathymac52]

My husband is 11q deleted as well, and started with BR chemo. He could only get 4 doses as the chemo seemed to affect his bone marrow and he was neutropenic for 6 months. He has been on Ibrutinib fro 9 months, and all blood work is trending normal. Wish we could have started that first, but I am grateful for now he is in a good place and feels well.

[Kokobean]

Good to hear. I’m guessing imbrutinib is the route we’ll need to go.

[bkoffman CLL CURE Hero]

Nearly all 11q patients are also unmutated. Ibrutinib or a clinical trial would be my first choice.

[ReneeSusan in reply to bkoffman]

Brian, I am 11 years post diagnosis, SLL unmutated, today told I have relapsed and acquired 11q. I Was treated with B&R twice and then Venetoclax in 2017 when I relapsed a 3rd time. I achieved remission on Ven but had to stopped it 7 months ago because it tanked my immune system. In 2017 I was offered IB but turned it down due to family history of heart disease. Now I am being offered Acalabrutinib because of the 11q, or possibly a new drug in the pipeline , not sure of the name. My question is, Acalabrutinib is it just as effective on 11q as IB? Worth the risk of side effects?

Renee

[bkoffman CLL CURE Hero in reply to ReneeSusan]

Acala should work well but there is less data than there is with Ibrutinib which works great with 11q. Acala has more headaches than Ibrutinib but may cause less AF.

[ReneeSusan in reply to bkoffman]

Yes, I read about headaches which usually go away with 2-3 weeks, hopefully. I don’t like what I read about the bleeds, afib, joint pain and fatigue with ibrutinib. I am still working full time 40+ hours a week, take care of a disabled hubby, I can’t afford any more major issues. I would prefer to go back on Venetoclax, but my doctor said not an option as I probably developed 11q while on it.

Have a wonderful Memorial Day Weekend, Renee

[bkoffman CLL CURE Hero]

Not sure why developing 11q on Venetoclax would prohibit its use. Get an opinion from a CLL expert or use our Expert Access program (cllsociety.org/cll-society-... to get a free online consultation.

[ReneeSusan in reply to bkoffman]

My CLL specialist Dr. Nasta from UPENN (she was assigned to me after Dr. Mato moved to MSK) told me this. I was disappointed and I have no medical background to know if this is true or not. I then asked if I could do a short course of a Acalabrutinib followed with Veneticlax, similar to the I&V trial. I think the Acalabrutinib will clear out and reduce the nodes. I was MRD- in the blood, but some nodes persisted when Venetoclax was stopped. Dr. Nasta told me the results from that I&V trial would be published by the end of the year and she would let me know if that is an option. Thank you for letting me know about the online consult. I think that is truly a wonderful service!

Renee

[bkoffman CLL CURE Hero in reply to ReneeSusan]

11Q DEL patients do better on Ibrutinib than those without the deletion.