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 first 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 unmutated. The last FISH test showed 200 cells analyzed, 72.5% of the cells exhibit loss of one copy of ATM; 11.5% exhibit loss of one copy each of ATM and TP53; 72.5% exhibit loss of one copy of D13S319, and 4.5% exhibit loss of both copies of D13S319. He told me to start thinking about starting treatment again and at my recent visit earlier this month I have started. 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 - just life - 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. Maybe I just want to vent. Just feeling very anxious right now.
New DX: I am a 76 yo woman. I was DX in 201... - CLL Support
New DX
I too had almost 5 years after my first effective treatment before the disease activated again. That was mmm 7? years ago.
It's very scary. You start to think in the back of your head you will be one of those whose disease never comes back. When you get the news it's a horrible shock. Please hang in there.
All I can offer, is if you think there are too many side effects of any medicine, ask to switch. We have more options than even 5 years ago. With that long of a remission, possibly you could repeat the same treatment if that's something you are interested in. Or perhaps another trial. You've got a really good doctor, who can explain options.
Come here & vent anytime you like. Sorry you are needing to, but, we're here for you, you're not alone.
First of all, I am so sorry that you lost your husband to Alzheimer’s. I can understand how caring for him was your primary focus and that CLL took a back seat. I can also understand being scared when facing relapse with a new set of mutations. I would encourage you to share your fears with Dr. Wierda and listen carefully as he shares with you his expectations for your treatment.
In terms of his recommendation for zanubrutinib, there is evidence that ATM mutations do not affect progression free survival (PFS) in CLL treated with zanubrutinib. Furthermore, overall response rates (ORR) with zanubrutinib in individuals with TP53 deletion/mutation are high.
In general, the loss of D13S319 at 13q14 is considered a favorable prognosis factor whether hemizygous or homozygous, so loss of D13S319 is not anything you need to worry about.
I don’t think that starting treatment with zanubrutinib, would be a burden on your son or daughter, its side effects should be minimal. And certainly, you can tell your friends about this second generation BTK treatment that was only approved for CLL in 2023!
Unfortunately for most of us relapsing is simply an expected part of the CLL journey, as there is yet no cure. Try to relax and enjoy the spring weather. You are fortunate to have Dr. Wierda on your team!
I was in that same trial down at MDA from 2018-2020. When I started I was unmutated and normal FISH. Reached UMRD at the very end of the trial. Now my hemoglobin and platelets are starting to fall and my CLL is showing up more in my nodes while my ALC is still only 3 and my WBC is only 6 to 7. My hemoglobin drop has been attributed to AIHA, but unsure so far on the platelets. They were treating my AIHA with rituxan bimonthly and IVIG monthly. Last week my hemoglobin dropped to 6.4 so they started me on 80mg prednisone, infused 5 months of IVIG over 2 days and gave me 2 units of red blood cells. Yesterday my hemoglobins were up to 8.8. The plan now is to start on zanabrutinib next week and taper off the rest except the monthly IVIG.
Do you think I should push for another FISH test? Is there enough CLL present to do one? Any other thoughts?
By the way I'm now being treated at Nortwestern in Chicago.
Sorry if I'm stealing this post.
Thanks John
Not stealing at all John. I'm glad to hear from someone in my same trial. I also met someone else from Chicago that started on the same day I did and when we would have our checkups I would usually see him. But somehow our checkup days changed and he might even being seen there like you are. To tell the truth I don't understand all the numbers. But I'm sort of glad that Dr. Wierda did another FISH test though. At least we know what we are dealing with. I've been on Zanubrutinib for almost a week now. I'm going to the satellite location to have my blood work done today so I don't have to drive downtown. I don't think it would hurt to ask about having another FISH done especially since your CLL is showing up again. Keep me posted on how things are going for you.
Thanks for your response. I'll be keeping an eye out for how your doing too.
john
John, I believe a FISH test could be done, but I don't think that it would change the recommendation for zanubrutinib. If you had progressed while still taking ibrutinib it would be important to check for BTK mutations and PLCG2 mutations, but since that is not the case there is every reason to think that zanubrutinib will work to control your CLL.
Thanks gardening-girl
If you think any of this may *possibly* due to CLL, I would possibly be asking for a bone marrow biopsy. My marrow filled up almost completely with CLL before it started spilling into the blood. However, that is unusual, usually blood & bone marrow infiltration match closely.
No sense doing a repeat FISH unless/until you are closer to actual CLL treatment.
Hi Gardening-girl,
That could be my monikor if I had thought of it. My kids know about the new mutations and honestly since I don't act sick, I don't think they think about it at all. I don't understand any of it - it's way above my pay grade but it just sounds worrisome. When I was first dx my husband was still functioning and was there to help me worry and to make sure that I did was I was supposed to. Now there is only me. Believe me I know how lucky I am to have Dr. Wierda. When it was first suspected that CLL is what I had, I sought him out. Somehow I found his name in a book that someone gave me and it happened to have his email in it. I emailed him one afternoon not really expecting to hear from him but the next morning there was an answer. He told me that he would have somebody from the main office call me to set up an appointment. And that was it. I'm also lucky that I live in the Houston area with M.D. Anderson at my backdoor.
pkpayne, please tell us something about your gardening!👩🌾
Well I've always gardened. My husband and I had a daylily farm (it was his side business - he worked for NASA for 35 years) for 25 years. Now I have gotten interested in tropical exotic hibiscus and have quite a collection now. I've also gotten drawn to desert roses as well and am working on a collection of those as well. I can't work as hard as I used to and I've found that I don't do well in the heat lately - and believe me, we have the heat here south of Houston. But I piddle around where I can.
Daylilies, tropical hibiscus & desert roses, all sound beautiful! Next time you post consider including a photo. I believe once before you posted a picture of some beautiful daylilies. Very uplifting!
I'll do it!
I'm sorry for the loss of your husband, I feel Alzheimer’s is more a challenge on the spouse/family than the patient in some ways.
I'm glad your doctor was so responsive, and could offer three other options! Be open with your children (even adult). Stop the "I'm a burden" thinking, try to re-frame it, you love them then let them return their love for you, it is a gift too often withheld. If they can't do much they'll tell you, and be so much richer for it, even older sicker parents give a gift their children can comfort themselves with later.
But hey, get on this! You've still got much to do! Bless your journey in this next chapter. 💐
Thank you
pkpayne, you've got this. You've done it before and will do it again. I'm 75, still in W&W since diagnosis 4 years ago. Also I'm 13q14. I'm sorry about your husband's illness and passing. Your memories and the gardening you two shared are an encouragement that life has been and is still a gift. Continue to enjoy everyday. The advances in CLL research are amazing for us. We have much we can look forward to. I am looking forward to a picture of your gardens. I do a little myself and love it!🙂Sandra
So very sorry to hear of your loss. You are wise to post here and share with us. Only we CLLer’s truly understand. CLL is a hard disease because we for the most part look fine so friends and relatives don’t really think to ask how you are doing etc. but to us it’s still cancer. Whenever tell my sons my latest report they acknowledge it but never think about it until I give the next report. I do have a husband that sees the day to day stuff but over all looking well and acting well is just a different thing. I have just finished 14 months of treatment V&O. A couple of bumps in the road but overall a doable experience. Monday I go for a CT scan to see how the inners look. I will report about that when I get the results. Wishing you the best!!
Wishing you the best results after your treatment! Hope your CT scan results are good. Hugs.
Hello. You have been through so much. My deepest condolences for the loss of your husband. I'm so glad you found us! You are never alone. Us CLLers stick together and understand your anxiety.
Here's a happy report: Researchers believe a cure may be found by 2030 or so. I worked in oncology, for years, and can tell you, the new treatments and hopeful outlook is nothing short of a miracle compared to the days of chemotherapy and radiation.
I hope you will continue to post here and share your journey, hopes, fears, and dreams. We are here for you. 🤗
Of course you would feel this way and no reason to apologize. You have been through a lot! You have one of the best doctors in this field so try and use that as comfort, he has your back. I completely understand about not wanting to share what you are going through and feeling, but know this will always be a much needed safe place because on so many levels everyone here can relate. But the flip side of this is we must, (as people living with a chronic disease) allow those close to us to give us emotional support. It is always hard for a parent to do that, but I feel like it also sets the reality of life that needs to be shared, as it gives our loved ones a chance to show love. Often, we shield those we love from what we are going through, when that is not the position they desire, and they would love to be part of our support team, even long distance. Glad you posted and welcome!
I remember that sinking feeling when my remission ended less than 3 years after my first treatment. Not having your husband to talk to must make it that much harder. I still have my husband, but at 74, I find a couple of good friends are my best support. While not having cancer, they are dealing with other problems and understand my emotions. My children are caring, but busy. I let them know what’s happening whenever there is a change in my condition, but keep it upbeat as much as possible.
I was enrolled in the final trial that led to Zanubrutinib, though I was in the control group receiving standard R/B infusions instead of the pill. However, my oncologist kept me updated on Z and said it was excellent in eliminating side effects while being just as effective as other treatments.
I’m glad you vented to us. “A burden shared is a burden halved”
You are obviously a very strong person and can handle this small bump in the road, after all, you have controlled this disease for years. I see no reason to think your body would not respond very positively if you must have a secondary followup treatment regimen. MD Anderson is on the cutting edge of cancer research and treatments in the US...they will take care of you, for sure.
Dear pkpayne . I can't comment on the medical bits of your post, but what did strike me was when you wrote "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?"
You talked about how you could share worries with your husband before Alzheimer's and then his death took that away from you. I know we on this site are a safe place to share worries, and you can talk to your wonderful plants while you garden, but I'm wondering where else you can find support for your most understandable fears. This can be a scary illness!
Of course, you can always find a therapist and the right one can be most useful and supportive.
But I also wonder if your son and daughter would like you to share your concerns and fears with them. Would you find it 'a burden' if they shared their concerns and fears with you? I wonder if they would welcome the opportunity to be able to give you support, to show their love for you?
As for friends, you will have a sense who might be safe to share concerns with or not. I wonder if you listen to worries about health or other things that they have; if you support them?
In my lived experience, it has always helped to share my fears and concerns with a trusted person. It helps to put them into perspective and helps me to find a way ahead. Eleanor
I live near two of my adult children and we all have found it helpful for me to share what is going on. It might be helpful for your son to accompany you to your next visit with your CLL specialist. Then he can ask questions and also learn what the drug will do, what the side effects might be, and how to help you efficiently. I doubt he will feel burdened. He will know you trust him.
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