Dear community
I was diagnosed June 2018 with CLL. I was put on Watch and Wait, until now as my Consultant has decided to start me on ibrutinib. As I am 81 and suffering from Parkinsons disease, I wonder if any other person in the community has the same complications as myself. It would be very helpful to me as I am quite concerned about the effect the drug might have on the Parkinsons disease.
Many thanks
I don’t have any experience with your question but just wanted to wish you all the best ❤️ Hopefully someone else can offer something more practical ❤️❤️
I wish I had experience to share, both my Grandmother and Father had Parkinsons. I have had most of the targeted therapies, but never heard of any interaction or complication from Ibrutinib and Parkinsons.
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It's not clear what country and medical system you are in, but your word choices may indicate UK. (You should complete your profile and include your country and history) - click on my name to see what I am suggesting, healthunlocked.com/user/lan...
then go here healthunlocked.com/user/len...
If permitted under your medical system you may want to request a 2nd opinion from a top CLL expert doctor to learn the most accurate data about your specific concerns.
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Len
Many thanks for your reply. I am in the UK. in July 2018 they put me on chemo. I wasn't able to continue on the chemo as it affected the Parkinson's badly. It affected my walking and knocked me off my feet for a while. That is when they put me on Watch and Wait until now when they advise ibrutinib starting in April. I am apprehensive at starting on the drug, but will give it a try. I know everyone is different but was wondering if anyone else with Parkinson's and CLL had experience of ibrutinib.
Lena, I hope you are still connected here as it has been 3 years. I am 62 and have been diagnosed with PD for about 12 years. I was diagnosed with CLL about 3 yr ago. I was put on "wait and see" for over a year. White blood cells being the main indicator marker. With initially a count of 28, where 10 or less is normal. Doctor waited will count hit 130 to put me on Imbrutinib. Count went down, went back up, down, up. As it was getting up to 60 we switched to Ventclexta. Right away count went down. Been about 10 months and count has been stable around 6. I have never had chemo. I am now taking about 25 mg/day instead of recommended 200 mg/day. I think I will be able to stop in near future.
Orlando/Houston, TX
I have CLL and SLL. It now looks like I have Parkinsons. Thought all of what I was experiencing was from Leukemia. I have a lot to learn. Will do more reading and less comments.
You actually have CLL/SLL (same disease). With the SLL expression, the blood cancer cells prefer to collect in lymph nodes. If your lymphocyte count exceeds 5(,000), then this blood cancer is termed CLL.
Parkinson's treatments are improving like those for CLL/SLL.
An oral medication aimed at slowing the advance of Parkinson’s disease was well-tolerated in 150 people who took it over 28 days, according to clinical trial results published in Science Translational Medicine on Wednesday (June 8). The trial did not assess whether the drug affected the disease’s progress in humans. However, the study’s authors write that their experiments in animals and in cells suggest that the treatment may correct the dysfunction in cellular lysosomes that causes the disease.
the-scientist.com/news-opin...
Which describes Preclinical and clinical evaluation of the LRRK2 inhibitor DNL201 for Parkinson’s disease
science.org/doi/10.1126/sci...
Neil
ii have CLL, SLL, and symptoms of early parkinson's that my mother died of. Imbruvica has my leukemias stable. Balance and metal fog are battles.
CLL
Looking for CLL specialist in Pakistan. 
CLL 
Covid community or CLL
Chemotherapy for CLL 
