I started this response over three weeks ago. I had some intense dyskinesia that caused me to lose content so I had to start over several times. Thank you to all those people that offered advice. I know I'm not the brightest bulb on the tree and I cannot repeat sub 5 minute miles in a marathon. At the end of the day you look in the mirror and say "I did my best." That's all you can do.
TASIGNA IS THE NOVARTIS BRAND NAME. NILOTINIB IS THE GENERIC NAME.
Despite the best efforts of the most brilliant and dedicated researchers world wide, we don't know much about Parkinson's . I mean no disrespect with that statement. I strongly feel you are close. The entire Parkinson's community appreciates your efforts. r Anyone can query the Internet and see PD IS THE FASTEST GROWING BRAIN DISEASE IN THE WORLD. FROM 1990 TO 2015 THE NUMBER OF PEOPLE WITH PARKINSON'S MORE THAN DOUBLED FROM 2.6 Million TO 3.3 MILLION. SOME MEDICAL PROFESSIONALS ARE CALLING THIS OUR NEXT PANDEMIC.
A good plan executed now with vigor and maximum force is better than a perfect plan executed a month from now.
Gen George S Patton
What happened to Georgetown's University's Plan? GU's plan was better than good. GU recognized the 500 pound gorilla in the room. They announced their primary objective in Phase 2 was to determine the safety and efficacy of TASIGNA (NILOTINIB GENERIC) The Black Box warning is a show stopper, even for the Perfect Plan. In early 2016 GU was having cash problems and didn't know if TASIGNA'S manufacturer Novartis would provide the medication gratis.
The MJFF approached GU to collaborate. After 5 months both parties reached an impasse, the falling out went public. I don't know the circumstances involved, you can decide. Anyway GU'S start was pushed back a year. MJFF decided to run their own Tasigna Phase 2 study. The MJFF got in the hammer lane, never looked back and had a Phase 2 report in hand O/A mid Nov 2019.2
I would not be writing about this except I was on Tasigna two different times. I had great results my first time. The second time was for 60 days.
Now for the rest of the story. Paul Harvey one of the best. RIP
I'm 70 years young and was diagnosed with Parkinson's disease in 2010.
I've been on a stable dosing schedule for five years. I normally dose. 300 mg Sinemet ER 200 mg and Sinemet 100 mg every three hours 24/7 beginning at 5 am. My 11 pm and 2 am doses I'll skip if I'm sleeping. I don't set the alarm clock to dose, sleep is elusive for most PWP. Dosages are maximums. My usual daily intake of Sinemet. was between 1800 to 2400.
I was on Tasigna off label for Parkinson's disease, one 200 mg daily, taken by mouth from June 1, 2017 until April 20, 2018 a total of 323 days. The second time was from Oct 11 to Dec 9, 2019, 150 mg, for 60 days.
If you can find a doctor who will write a prescription for you please let me know. You will need medical testing before you go on Tasigna and periodically as long as stay on it. TASIGNA is very expensive, $13,000 per month. TASIGNA has very tight dosing requirements it must be taken on an empty stomach.
So why did I return to TASIGNA a second time? I had very good results. Read up you decide. TASIGNA is risky and not for everyone. Each of us has to perform their own due diligence.
The longer you have PD generally you begin taking more medication. I've been dosing every 3 hours 24/7 beginning at 5 am. That's 2400 mg levodopa daily maximum, my usual dose was 2,000 to 2,200. Sleep is a big problem for PWP. I was getting no more than 2-3 hours of disturbed sleep each night. I was in zombie land with much brain fog daily.
DAY 13 I slept 915 pm till 430 am first time in months I slept through the night. This sleep improvement continued the entire time I was on Tasigna. I was sleeping through my 11 pm and 2 am doses - that was going to be a problem. More on this in a minute.
DAY 2O I mowed the lawn in one day. For the last two years it's taken 2 or 3 days. I didn't have the strength or stamina. Was Tasigna responsible? I was sleeping better. I definitely was more limber arms, legs and core. I noticed my on time increasing.
I thought missing my 11 pm bedtime and 2 am would be a problem. That's a drop of 600 mg per day! Would I freeze up and be unable to get to the bathroom in time? Wow I was sleeping through the night 7-8 hours and gettiing up to pee and back to bed and back to sleep! I was feeling it big time. I couldn't thank Almighty God enough. After 60 days on Tasigna I was SLEEPING mostly through the night and I felt great. I was able to walk normally no shuffle. No baby or stutter steps. Able to shower without holding on to the grab bars. Most incredibly I was completely limber. My festinating gait was one thing that's never improved.
DAY 70 I recorded my first 800 mg intake of Levodopa. I thought I made a mistake - maybe I forgot to log in a dose, maybe I forgot two doses - anything is possible. Bottom line I was taking less levodopa. After 90 days on Tasigna i felt GREAT! I was a new man. I needed to tell the world. My hometown Neuro told me all my positives were placebo effects. Is the placebo effect that powerful? My Neuro is a brilliant doctor - he has much experience and he's seen this before. I didn't know what to think. I mentioned to him that during this time my sense of smell returned after an absence of 15+ years!! Could that be a placebo effect too?
DAY 96. Sep 4, 2017. Labor Day weekend I told our children the news. I felt fantastic, the best in many years. I continued on with the small study group i was in. I continued to maintain good sleep, levodopa intake 1,000 - 1,400 mg daily, an occasional spike to 1,700 and lows 700 - 900 were noted. I still felt great but I sensed myself leveling off. My hometown Neuro continued to downplay my many improvements. He's seen lt all. He's a tough guy and we've been at odds at times. I get it. He is a very sharp doctor, I respect his judgment and knowledge. I know I have rough spots. We agreed to disagree at times, let's leave it there. For the record my hometown Neuro is a brilliant doctor. He has seen it all and is very protective of me. I will never criticize his bed side manner. I'm one of those patients that has to be hit between the eyes before i make the connection. Subtle never was in my vocabulary.
DAY 323 Apr 20, I stopped taking Tasigna and ended my time with the study. I journaled very little after that. I made some general notes. I always felt better on Tasigna than off.
I called every neurologist in the phone book. No one would write a prescription. After a year of searching I contacted Georgetown University. I had an appointment on 9 - 11 - 2019. I saw the most security ever. I'm an Army Veteran (1971-74) I thanked many first responders, security , and active duty personnel for their service. They have our back, and it doesn't cost you a cent.
October 11, 2029 I was back on Tasigna150 mg. Note in the first study I took 200 mg.
DAY 31 Nov 10, 2019. First 1,100 mg levodopa daily intake. General note, my levodopa reduction was not as sharp and deep as my first study. Also it appears there's more off times with the 150 vs the 200 dose.
ON December 10, 2019 I was taken off Tasigna. My monthly EKG showed an abnormality. My family doctor did the right thing sounding the alarm. By the time I could get a cardiology consult, the MJFF had released their Phase 2 Tasigna trial results. Where was GU'S Phase 2 report and rebuttal?
In the meantime I had my cardio exam. My cardiologist said I had an extra heart beat. He told me many people have this condition, it's common.
The damage was done. The 150 mg dose I was on wasn't doing it. Maybe the MJFF report findings were right. WHERE WAS THAT GU PHASE 2 REPORT?
Isn't there something we could learn from a GU Tasigna Phase 3 Study? There is risk every mornlng you wake up and get out of bed. There Is risk and there is acceptable risk.
I have one for the Rules Commitee - increase the degree of difficulty and let good plans go to Phase 3 . Conventional wisdom is not working.
IF THEY CAN MAKE PENICILLIN OUT OF MOLDY BREAD THEY CAN MAKE THEY CAN MAKE SOMETHING OUT OF YOU. can make something out of you." M. Ali.
SUPPORT "MOLDY BREAD"
GEORGETOWN UNIVERSITY FOR PHASE 3. LET THEM COMPLETE WHAT THEY STARTED. MAYBE TASIGNA. IS NOT THE ONE.
For those who asked:
My son and I completed our MLB Stadium Tour in 2018. We vowed to visit every ballpark and watch a game at each one. Some years we would go to as many as three; other years one or none. It took 18 years and covered 42,000 miles.
We met so many wonderful people along the way. I'd like to give a big shoutout to a fellow PWP. When we traveled to his MLB city he offered (we accepted) to pick us up at the airport and take us to our hotel. Thank you MBA for your hospitality and friendship! BTW and JMO ( by the way and just my opinion) this man has that special gift to explain the most complicated, inn terms I understand.
For all you newbies Parkinson's is like no other. It's not like ear drops and 10 days on amoxicillin. You are very likely to go awhile before you get the correct dose and times to dose. That's very common. GIVE IT TIME. You don't have to go it alone. EVERYONE here leans on each other. Yes there is that much support.
Do not give up. The smartest and most dedicated people are hard at work.
Thank you all for listening.
Take care, stay safe and God Bless.
Do you know how much a ML baseball weighs?
Do you know how many stiches are on a baseball?
Who was the first black manager in MLB?
Bonus name the team.
Double bonus name the year
HINT: He is the only player in the HOF to earn MVP honors in both leagues.
Link to Stadium Tour:
arcgis.com/apps/MapSeries/i...
How Gleevec Transformed Leukemia Treatment and Cancer Research:
For those that would like a little history on tyrosine kinase inhibitors. Good reads and short.
cancer.gov/research/progres...
Game Changer Cancer Drug Celebrates 20 Years:
usatoday.com/in-depth/news/...
#gleevec #tasigna
The importance of vitamin B6 against Parkinson's. The end of a meaningless prejudice since 1975.
Long-lasting response to levodopa in Parkinson's. Another important discovery funded by the Grigioni FoundationTuesday, 07 July 2020.
Novartis' nilotinib (AMN107, trade name Tasigna)
ANYONE IN THIS TRIAL: Prothena PASADENA Phase 2 trial? Love to hear what you think - some say most promising PD trial.
