CLL and Parkinsons

[Tsadams]

Diagnosed CLL Npv. 2018, started Ibrutanib early 2019 and been on since, bloods good so far. Recently diagnised with mild form of Parkinsons. Anyone else with similar experience, or advice, do's dont's? Stay safe all

[lankisterguy Volunteer]

Hi Tsadams,

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We are sorry to hear of your dual diagnoses.

Parkinson's is in my family (my father and grandmother both had it starting around my current age) so I am expecting that shoe to drop someday.

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Here is a link to the 12 previous posts that include Parkinson's

healthunlocked.com/cllsuppo...

and 7 previous posts that mention Parkinson :

healthunlocked.com/cllsuppo...

I hope you can find some useful information in those.

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Len

[Tsadams in reply to lankisterguy]

Len, many thanks for the swift reply. I think the link is the same, either way, interesting to read. Only had a quick scann read, but will digest in detail. Is there any recent thinking, evidence on this subject? Use of IB and Dopamine\Parkinsons. Naturally I will be speaking with my Haemotologist.

[LeoPa]

pubmed.ncbi.nlm.nih.gov/342...

Look into this.

[Soundsinamotion]

unfortunately these drugs are so strong that they do cause side effects. My 74 year old dad was on ibrutinib for a couple years before going into remission but now he has dementia and kidney issues, nobody knows for sure if it was ibrutinib or his heart medications that caused this but anything is possible. Sometimes you have to decide what’s more important, to stay alive with side effects or forego taking medicine. Seems every drug has side effects that can cause new problems. Get as much information you can so you can make the right decision for yourself.

[Tucano]

Hi Tsadams. Can you kindly share how your diagnosis of Parkinson’s was determined? The reason that I am asking is because I would like to understand what symptoms you had. My mother had Parkinson’s but at a later age in her 80’s. I have CLL and started treatment , but I sm wondering if I could be st the very early stages of Parkinson’s.

[Awyn in reply to Tucano]

Hello Tucano. One of the precursors to Parkinson’s can be sleep disorders… specifically REM sleep disorder, wherein you physically/verbally act out while in a dream state because your body is not achieving full REM sleep.

This was my husband’s precursor. While we thought it was funny that he would talk, run and even sing in his sleep, a neurologist did not find it so when we casually mentioned this while attending an exam for our daughter (the hereditary/family history discussion while investigating a seizure she had).

Her neurologist immediately took my husband as a patient and ordered a sleep study which confirmed the REM sleep disorder. She then checked him out thoroughly for Parkinson’s (lots of motor cognitive tests). No Parkinson’s at that time.

Mild Parkinson’s-like symptoms began manifesting years later, like occasionally his fingers freezing up, legs cramping, balance being a little off. Coincidentally, these mild issues began within a fairly short period of time after his CLL blood results tanked and he began treatment on Ibrutinib (no medication adverse relationship we’ve been able to ascertain. We believe it was simply a harsh time for his body given he was so debilitatingly sick and immune compromised at that time).

Approximately 2 years after that, while his CLL numbers improved (Woot Ibrutinib!), sadly the PD symptoms began to flare, uncontrollable tremor, talking and walking issues, etc., and he received a firm PD diagnosis. He was RXd Carbidopa/Levodopa. The true test of PD beyond the motor and cognitive testing is that if the medication works to subdue the symptoms…yup, it’s Parkinson’s. Dang!

PD is difficult to diagnose and requires a neurologist’s work up and regular monitoring.

[Tucano in reply to Awyn]

so sorry to hear the diagnosis. Thank You for all the detail info. I started 2 weeks ago on acalabrutinib. My hands are shaky in the morning especially if I am stressed. I will do some follow up based on your info. Thank You again for sharing

[country76]

Sorry to hear your diagnosis. I wasn't tested for Parkinson's. I had a lot of cramping and involuntary muscle movement.

[Awyn]

Hello Tsadams and thank you for inquiring about CLL and Parkinson’s!

While I am sorry to hear you have been diagnosed with both, there is hope and you are not alone!

Like you, my husband shares both diagnoses. We have been intently studying and working with his oncology/hematology and neurology physicians and treatment specialists (it took a while but he finally has a really great, collaborative team) to integrate therapies amidst the medications that he’s been prescribed for each.

Also like you, we initially reached out in this community to find others with the dual diagnoses . Here is a link to my first post, and in it I referenced several articles, research and the like…. Particularly querying the potential relationships between the two diagnoses on intercellular, microbiome and genomic levels (we find the B-cell / glymphatic intercections fascinating). We would love to hear your thoughts. Please reply in that post if anything strikes a chord with you as there are others who posted there who may be interested and helpful to your journey, as they have been to ours.

healthunlocked.com/cllsuppo...

In this next post, my husband and I were focusing on nutrition. We are constantly trying to strike delicious balance wherein the microbiome… gut/blood/brain …factors intersect, in an effort to strengthen his system and abate symptoms. Again, would love any comments or suggestions you have in this regard and there are others in the post who’ve made some great contributions.

healthunlocked.com/cllsuppo...

We are constantly weighing pros and cons relevant to my husband’s body, mind, spirit …quality of life…when considering any medication, treatment or dietary practice. Everyone is different… what works for some may not for others.

For us, we choose a proactive way of life amidst the consummate CLL & PD reminders. We look for humor amidst health management, mixing work and play, have fun in our gardens, making music (husband plays guitar and is in a band) and spending time with family and friends…. rolling with the punches when they come swinging is much easier when we face them with fierce love and the support of community.

My husband is fortunate that his CLL is at bay. He continues on Ibrutinib and has reached a state of “remission” affording us the opportunity to focus intently on his Parkinson’s prognosis right now.

Finally, I recommend you consider also joining the “Cure Parkinson’s” community here in HealthUnlocked. We are learning a lot there… For example, we’ve added supplements to abate pain, tremors, dyskinesia, etc, learned that the MIND diet is key (great for CLL too!), implemented exercise routines that include cognitive “fast” walking and binaural beats, yoga, etc… and, we follow many of the trials and studies. Some good stuff! We’ve also shared some there in an effort to connect with others who have similar dual diagnoses.

Wishing you wellness!