Tirasemtive / CK-2017357 Feedback

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jpsteeler99

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This thread is for people to report feedback on their experience in the latest trial phase 2.

Please do not HIJACK this thread with specific questions or comments to another member. Send them a private message instead. Lets keep it clean and easy to read.
 

hn7609

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I am getting ready to return for visit #6.

My strength & breathing tests from visit #5 were virtually unchanged from my original baseline values.

The only unusual thing I have noticed is that the pills don't seem to mix well with alcohol. I have had no other side effects.
 

jpsteeler99

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The first week I felt light-headed & dizzy when I took it. That went away after I was randomized and I have felt nothing as far as strength getting better. My legs have actually gotten worse. My breathing, swallowing and speech have maintained. I also started Nuedexta just before the trial started.
 

pearshoot

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please remember ck-357 doesnot make als better, its suppose to improve strength in remaining muscles
 

mnpackers

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I just started week 1, so I don't know if I have the real drug or placebo.
At week 0, I didn't have any side effects....although I was hoping for the euphoria side effect from Phase 1 study..ha.ha
I was diagnosed Jan.2013, at Mayo.
Hopefully, I am on the real thing?
 

pearshoot

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see what i mean about lack of volunteers. some have finished this trial and others are just starting, thank you mnpackers. can you see why it takes so long to go through all phases and get this in the hands of fda. the drug works, if you don't have side effects. i did phase II part a
 

hjlindley

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I had to leave the clinical trial due to the Drug lowering my blood pressure to a dangerous level. It is a slight hypotensive and since I already had low blood pressure dropped to a level but I would not have been able to live with it too long. But I'm hoping my involvement help learn something about the drug. Good luck to everybody!
Hollister
 

ottawa girl

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I was accepted into the trial - but bailed. I read about the dizziness and that really scared me off. The timing is just plain bad also. Moving, ALS walk commitments in two cities etc etc.

The neuro managing the trial wasn't too happy, but I just couldn't face the possibility of feeling sick with so much going on.

I am embarrassed to admit, I'm scared to try it.
 

pearshoot

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my only side effects was being very talkative, happy and and sleeping off a hangover right hand went from 43lbs squeeze to 50.5lbs, left hand from 11lbs to 19lbs. that was in nov 2011. had i been able to stay on medicine would right hand now be 10lbs and left hand 0? who knows? the lack of volunteers for drug trials is a great problem. those of us past 3 years can no longer participate in drug trials so we depend on those less than 3 years to step up. it is not the fault of fda not approving medicine that appears to work but lack of volunteers to complete necessary testing. the monkey is on our back, so may i ask, what are we going to do about it?
 

Nighthawk

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@Ottawa Girl:

Do not feel embarrassed for not trying this drug trial.
I trailed it and didn't experienced any benefits other than very sharp drop in blood pressure, general weakness, dizziness, lightheadedness, that forced me to stay in bed several days.

I know everyone reacts differently and, others may have not experienced any these symptoms but, some like myself did and they weren't very pleasant.


NH
 

mich5

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I volunteered for this trial and contacted the drug company and trial site administrator many times. The trial site here will only take 'their' patients. They would not meet with me. It's not always lack of volunteers as the reason for taking so long to get through the trials.

We pALS have limited time and we all progress at different rates. our priorities are constantly changing and sometimes the time needed for participating in a drug trial conflicts with a higher personal priority. I know over the past year and a half I have scheduled once-in-a-lifetime events with friends and family that I wouldn't have missed for anything. I am grateful for all pALS who participate in these trials as well as support and wish the best for pALS who live life to the fullest and spread awareness in other ways.
 

dbltree

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Elaine,

I second NH's thoughts, knowing the possible side effects along with the life challenge's you face right now you made the right choice. My experience was worse then NH's and quite frankly I was looking for a bridge to jump off. :shock:

While at UI yesterday the nurse told us that only 3 (out of 250 Iowa PALS) trialed CK-357 and 2 of us dropped out due to side effects....not good #'s for Tirasemtive but also shows pitiful participation as PS notes.

I don't handle drugs well...puked my guts out after taking a drug for RLS, gabapentin caused my hands and feet to swell and the CK-357 drug caused a whole series of intolerable side effects.

All that said, I told the trial nurse that I would join any trial if the drug can actually stop or slow progression (something CK-357 can not do). Chemo is a nightmare but knowing it can kill the tumor makes it worth enduring and any drug (or stem cell) designed to actually increase life expectancy I will join the trial and I hope others will to.
 

mbmurray

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I attend the GWU clinic in DC. I was talking with the patient coordinator and she said there were 7 participants in the trial at that location (i was the first) and that they are going to modify their contract (7 PALS was their limit, as they have more volunteers to participate!)
 

pearshoot

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ottawa girl maybe after things settle down you may reconsider, if not filled
mbmurray thats good news
 

jpsteeler99

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please remember ck-357 doesnot make als better, its suppose to improve strength in remaining muscles

You are contradicting yourself. I would think improved muscle strength would mean better. Maybe you meant it would not reverse symptoms which I think most people understand. I go for my last visit this week. I had no improvements during the trial. My legs got weaker but everything else stayed the same. I know I am on the placebo so I am looking forward to the end. They have started a new trial(phase 1) for a modified version of CK357(CK-2127107).
 
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