Treatment for unmutated ighv

My husband is preparing to begin FCR treatment. His WBC is 200k, all other numbers below normal. Anyone experienced this treatment who has the unmutated gene? Thank you!

[Lily68]

I’m unmutated ighv as well but docs at MD Anderson said that IV chemo would not work on my kind of CLL. At time of Dx most of my labs were abnormal including being anemic. I am in clinical trial at MDAnderson and take 2 oral medicines. Is he seeing a specialist?

[Hidden in reply to Lily68]

Yes, he is actually about to take part in a trial, as well. Thanks for your response and wish you continued healing.

[lankisterguy]

Hi Semperfi76,

Is your husband a former Jarhead? Or are you the Marine?

However before you answer with any personal info, I suggest you go back to your original post to lock / restrict your post to only members of our community.

To do that, please look for the v in a small box at the bottom of each original post.

when you click on the v, choose the selection that says "Edit"

and then look for the bottom area to find "Who can see my post? "

and then change the selection from "Everyone" to "Only followers in my community"

And finally click on the green box that says "Post"

I'm Trisomy 12 UnMutated, and have had 6 rounds of treatments in 10 years with 4 different non Chemo drugs. I've been in one clinical trial for 30 months on Idelalisib (Zydelig) and am currently taking Venetoclax.

In general we UnMutated folks have more aggressive disease and FCR Chemo treatment does not last very long. So the newer non Chemo drugs like Ibrutinib, Idelalisib and Venetoclax are usually recommended by the top CLL experts.

Does your husband have access to getting 2nd opinion from a CLL expert before he starts treatment?

Len

[HikerBiker]

Hi,

I am also unmutated. I started FCR plus a trial drug (duvelisib) in July 2016. I got through 2 rounds and then was hospitalized for 25 days with fevers and very low blood counts. When I was released, I decided to stop treatment altogether for the time being, partly because I became more aware of the thinking of doctors like Richard Furman and those at MD Anderson, who advocate for alternative treatments for those with IGHV. I was told by my CLL specialist that I had about 10% CLL cells in my bone marrow (down from 80%), and that I could expect another 2 - 3 years symptom free, at which time there would probably be other new drugs available that are less toxic.

As Len mentions above, drugs like Ibrutinib have better outcomes for unmutated folks:

oncotherapynetwork.com/leuk...