changes in markers and new treatment

[pkpayne]

I am a 76 yo woman. I was DX in 2016 and was in a trial at MD Anderson from 2017-2019. I achieved UMRD at the end of the trial of Ibrutinib and Venetoclax. I remained in total remission until my visit after my husband died from Alzheimer’s in Oct 2021. Since then it’s been downhill. Dr Wierda is my specialist and before my last visit he ordered testing to see if any markers had mutated. Originally DX with 13q and 11q unmuted. Now I can add 17p to the DX. He told me to start thinking about starting treatment again and at my last visit earlier this month I have. He said he had 3 options in mind for me but felt that Zanubrutinib would be the best choice with the fewest side effects. I have gone on with everything like I was ‘normal’ and paid no attention or worry to CLL. Maybe because I took care of my husband who was bedridden for the last 1 1/2 year of his life. But now I’m scared. My son lives near me and is concerned but I don’t want to burden him. My daughter lives in Georgia and bc of her job she doesn’t get to come home often. I have good friends but what could I tell them? Sorry for being so lengthy and maybe I don’t even know why I’m posting. Just feeling very anxious right now.

[AussieNeil]

Hi Paula,

I think you meant to post to the far more active CLL Support community healthunlocked.com/cllsupport so I recommend you repost there. Meanwhile, be reassured that you've an excellent CLL specialist supporting you.

Neil

[kathyg]

Praying for you.

[larrymarion]

Being scared is quite understandable given your journey so far, but keep in mind that changed Dx does happen. That's why the CLL society urges patients to "test before treat." Since you're being watched by one of the best in the CLL world, you should be reassured. Also, be glad we have second and third generation drugs these days. The data on Z and its relatively minor side effect profile should also give you hope.

Disclosure is such a tricky, and personal decision. Who you tell, what you tell them, and when, are tough. Here is an article that goes into my experience and lessons learned, along with some data about what other CLL survivors have done.

cllsociety.org/2023/03/chro...

One lesson learned directly applicable to your situation--how will your son feel about you not bringing him into the loop when he eventually finds out?

[pkpayne]

Larry both my kids know about the CLL as well as my close friends. But I know they all have their lives and I don't want to be a whiner. If I asked for help with something I have no doubt that they would comply.......btw I read the article you wrote and it was wonderfully thoughtful. My husband knew immediately since he went with me to see the doctor. And our kids are grown and they know. I have a friend that always posts everything about her health issues on FB so that she can have all the prayers friends can offer. My friends do know it and so do some of my close neighbors. But I would not ever want to put something like that out on a FB post. I took one of my neighbors to all her cancer treatments before she passed away and I know some of my neighbors would do that for me. All I would have to do is ask. Some have already asked if they could even go with me to do labs so I wouldn't be alone but it really isn't necessary. For now I am independent and can manage things on my own but it's nice to know they are there. Thank you for recommending your post.