Sprycel/Disantinab & long term side effects severe
I need your thoughts & hopefully some information on Dasatinib (Sprycel). My sister, now 71 was dx'd with ALL Ph+ June 2021. She's been in remission, will be 5 years in June. Yay!, however throughout that time, she was on a couple other targeted therapies, one of which caused a heart attack, so was put back on Sprycel, and now has been on the lowest dose you can get (20). Every 3 months she has her ABL-BCR test done & the trend has consistently been at .05 (4.5) showing no signs of ALL. This trend has been like this for a couple years now. All of this is good, however, for the last couple years, she's now experiencing some severe side effects, which her oncologist doesn't seem to take too seriously because, "you're on the lowest dose". We are convinced what all she's experiencing are 'later' side effects of Sprycel. They are: severe bone, muscle pain in her knees. She can hardly do stairs anymore without severe pain, severe cognitive function, an extreme sleep disorder (insomnia), lack of REM sleep, up & down with about 4 hrs sleep a nigh causing sleep deprivation, nodding off involuntarily during day, but then extreme bouts of energy where she has to be doing something like just putzing around & could do this for 12 hrs straight, then causing exhaustion. Her sleep disorder began with severe RLS in legs, but arms flailing, sitting up in bed then at times falling off the bed or nodding her head in bed or even on the toilet & near falling with her head hanging down in sleep. She's obviously not getting enough sleep, no REM sleep. About a year ago, she began shouting out words/sentences involuntarily almost like tics/tourettes like, but has gotten progressively worse. Ex, she yelled out something about dogs while sitting in her therapist's office once. She'll just shout out sounds like a yell many times, jerk then like 'come to' & not realize what she said or did. Also loss of balance. She fell in her kitchen a week ago, which could've been very serious, developed a black eye & didn't feel right so she went to the ER. A CT scan didn't show anything, however she didn't feel right for a few days. Of course we were concerned of a concussion. At the ER, they did a blood test, which was good, but did a urine test & it showed positive for cocaine, opiates, THC, which she does not take any of those. Note: She is a recovering alcoholic & has had several urine tests when she was receivng Vivitrol for her alcohol cessation & all her urine tests showed up with all these drugs & no one can understand why, no answers, so naturally at the ER after the fall I'm sure they attributed it to opiates, narcotics, THC etc, which is a false positive. She lost her balance at 4 a.m & fell, maybe was up, but asleep considering her sleep pattern. It's getting very severe. The yelling out, lack of good sleep being inconsistent, even OCD the need to get up & clean, move things around, try on clothes, flailing arms & legs, nodding off etc. Her oncologist has suggested she see a neurologist & for possible sleep study. YES!, however, no doctor including her primary, ER, & neurology seems to be taking it seriously enough to get her in ASAP. She needs an MRI & sleep study & whatever else but doctors other than Oncology understands side effects of Sprycel & we're convinced her condition is from this drug. Did I mention severe anxiety, high levels of stress she can't seem to control, extreme worry, can't relax too.
Does anyone have any suggestions or any of these experiences with Sprycel with these delayed effects. She took for over 2 years with no problems like this. She needs a brain MRI, testing or whatever they do for central nervous system, sleep study, however she cannot get in to neurologist until end of January & it's worrisome because it's progressing to a severe degree.
Does anyone have brain, cognitive, psychological, sleep disorders, twitching, yelling out with this drug?? We're just getting a 'run around' because other than an oncologist, other doctors do not seem to understand these targeted therapies & what they can do & we're convinced it's from Sprycel.
I apologize for the long read, but it's getting urgent & we need some understanding. Are there any possible links of long term studies of the brain/central system effects on this drug? At 5 years, would she be safe to go off it since she's remained in remission with a consistent .05 BCR ABL?
I appreciate you taking the time to read this & offer any thoughts.
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This is a bad drug for liver function she may have hepatic encephalitis with the episodes of collapsing then running around. Very important they check her liver.
@8positive I checked her liver function counts (AST,ALT, Billirubin), anything else I could check? They are all within normal range & also the trend for the year have all been within normal ranges.
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Relating to Sprycel though or a combination of alcohol abuse that wouldn't show in ast,alt etc? Guess I'm not understanding
Long term use of Sprycel, even years later while still on it is likely causing RSD (Rem Sleep Disorder) from what we've learned, with OCD on top of it. Talking, yelling, thrashing around, getting up, not getting the Rem sleep needed, extremely bad RLS & causing sleep deprivation during the day including cognitive problems, balance issues, memory loss etc. To make matters worse, a urinalysis taken a couple weeks after a fall (testing for I don't know what), showed up positive for opiates, thc, narcotics..... which is COMPLETELY false. Next step we feel is a sleep specialist, hopefully prior to neurology appoint end of January to study her sleep patterns & provide some sort of treatment. Finding it hard to get primary doctor, oncologist & these doctors to collaborate together & get her on track with her sleep disorder that's progressively getting worse & potentially dangerous because she is 71. BACKGROUND: Almost 5 years remission from ALL B PH+ taking lowest dose of Sprycel daily, along with antidepressant, other meds & supplements, recovering AD (alcohol disorder), who still has occasional mini bottle of straight vodka. Needing to completely stop the alcohol & she's aware of that. Joint pain extremely bad in knees, neuropathy, anxiety. Does anyone who's been on this drug for ALL experience RSD & what was your approach for treatment & dx? Gotten to a 'severe' level with these symptoms & sleep deprivation.