r/cll • u/RumShiner • 7d ago

Treatment Experience Question

My Mom was recently diagnosed with CLL. She is 79 & has some other health problems including diabetes, high cholesterol, & hbp. Her inital dr had a CT scan done last month, which showed fluid in her abdomen and and enlarge liver. He said it is cirrhosis from having fatty liver and diabetes. He also told her that he was not worried about the CCL that it was in the pre stages and was more worried about her liver. That dr has since left the office and she has been transferred to his colleague. The new dr is worried about the CCL, wants her to undergo treatment, additional blood work, CT scan and a bone marrow biopsy. He would like for a gastro to look into the liver as he does not feel that he is the best to make that diagnosis.

Yesterday we had her treatment class and scheduling. The will be placing her on 3 medications. Calquence, Guhzyvuh and another that I do not know the name of yet. The nurse has me very worried over the possible side effect and possible worsening of her current symptoms.

As of now her treatment plan will consist of daily medication(s) and an IV of something at the center's office. She will go through seven "cycles" of treatment, with the first being 4 treatments in month 1, then 1 treatment per month for the remainder. Is this standard? During the class the nurse said it would be 4 treatments per month, then at scheduling it changed to the 4, then 1.

There is a possibility that the treatment plan will change depending on her bone marrow biopsy results and her monthly labs once treatment starts. Unfortunately that part is a waiting game.

In a nutshell: At this point I am very confused. It has been like a roller coaster of revolving doors. Yes worry, no don't worry, etc.

Has anyone had a similar experience? Does anyone have any experience with these medications? Is the 4 then dropping to 1 treatment per month fairly common/standard? I know all medications can affect an individual differently. My mind is going 90 mph right now with anxiety.

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4

u/PrizeAnnual2101 7d ago

Sorry to See this stressing you

I would recommend you get referral from the CLL Society for a second opinion ss the reasons to treat or wait our quite complicated

https://cllsociety.org

2

u/AdFickle8174 7d ago

I advised completion of testing. You never want to start these treatments prematurely. I initially started on Calquence 100 mg. daily. But, after four months I had issues with irregular heart rhythms, and racing heart. My Oncologist stop chemo pills for one month and then started me on Brukinsa which I’ve been taking since Feb. 2025. My condition is stable with fairly manageable side effects. Thanks be to God. 🙏🏼

0

u/miskin86 7d ago

Testing is almost optional with targeted drugs. They are basically the same drug from different brands. 

1

u/ravenheart260 7d ago

To your question you can go to cancer.org and read about treatments —it has plenty of references and answers to your questions—good luck

1

u/ravenheart260 7d ago

Also I will be undergoing treatment for my CLL, but my oncologist will be putting me on Brukinsa pills in 2 weeks after all my radiology tests are done

1

u/BigHutch05 7d ago

Hello. Sounds like you should get her seen by a CLL Specialist or at least get a free consultation from a specialist at the CLLSOCIETY.ORG. You can also begin your study of CLL and its current treatments on that website.

2

u/mcdbkd 7d ago

Time for a CLL specialist. Bring all your records and don’t be surprised if they repeat tests to verifying results. Go to the CLL website for a Dr. near you.