Advice Needed for Hand Tremors

[BaseballGardener]

My mom is 96 years old and in failing health. She was diagnosed with CLL 7 years ago and has been on Calquence for the last 4 years. She has other health issues, but I am learning that rheumatoid arthritis (RA) is a potential consequence of having CLL. RA is an autoimmune disease; perhaps her recent hand trembling is unrelated to CLL. I am reaching out to this learned community with so much experience. What advice can be given to help my mom? Seeing a doctor or specialist at this time is very difficult, as my mom had suffered a fall accident last November and her mobility is very limited right now. Any help would be most appreciated; thank you.

[JigFettler Volunteer]

A new hand tremor maybe the manifestation of a number of conditions. Including age. Unlikely CLL related. A Dr would assess the condition as a whole, check bloods like thyroid levels. Other neurological causes would be included in such an assessment.

It's a trip to your Family Doc I guess, would be the best advice. Worth doing. Treatable causes exist, just need a diagnosis!

Jig

[BaseballGardener]

Thanks for your opinion. If you don't mind my asking, how old is your mom and what does she do for mitigating comfort type therapy for her hands. Another complicating factor is that muscle tone decreases with age. My mom's skin is fragile, and any abrasion can cause the skin to just peel away. When you add CLL into this, any wound presents a potentially longer period to finally stop bleeding.

[JoeMcDote]

Hi there, I hope you found some help for your Mum. Could I please ask you a couple of questions as my 83 year old FIL was taken off Calquence after about 10 months as the haematologist wanted to see how he held up without it. and is now refusing to put him back on it or anything else. During his time on it his HB was around 80 to 95 but he had 2-3 monthly infusions of blood. His neutrophils were usually just under 2 and his platelets were in the 40's. The only other treatment he had was a weekly GCSF injection. Was your Mum treated with anything else and how were her bloods compared to my FIL's. Since taking him off the calquence he is back to weekly blood transfusions, his platelets have gone as low as 9 and his neutrophils are through the floor. I have a meeting with the haematologist in a week and I want to give him some positive cases. Ty xxx

[BaseballGardener]

Hi Joe, glad to help in any way I can. Mom's platelet count was much higher than your FIL. She was typically near 70 K/cu mm, which is still on the low side. Neutrophils were about 16%. By HB, do you mean hemoglobin concentration; I am not sure what HB means. My mom responded well to Calquence, but her daily dose was 100 mg daily. Check which dose your FIL was taking. Taking the Calquence helped for sure, but there were still side effects, most notably bruising and inflammation. My mom never had a blood transfusion to treat chronic lymphoid leukemia, so I believe your FIL's case is much different. Her oncologist at Hopkins Hospital was very pleased with how my mom had responded to Calquence, her last WBC measurements were near 10,000. Due to her age, they believed she was doing very well and did not recommend any other treatment. When I sent out my original message in March, I was desperate. Without going into a lot of detail, my mom suffered a fall accident in late November 2022 and had several broken ribs. My mom also had a history of cardiopulmonary issues: she had a pacemaker and a heart murmur. By mid-March, I realized my mom was actively passing, most likely due to cardiovascular complications. Her hand tremors were one indication that her body was shutting down. I don't believe the tremors were related to the CLL, which was the feedback I had received from those who replied to my message. My mom passed on 3/28/2023, at the age of 96 years, 8 months old. I miss her very much, she was my 'Mighty Mom'. I wish you and your FIL all the best. It is obvious you care very much about him, and he is lucky to have such a good son-in-law.

[Trackwarrior]

I am 61yo and after 2 years on Calquence the shaking and muscle cramps are unbearable. Afib is also a problem where I am going to need ablation for Afib.....struggling!