Too late for trials?

[mdaniela]

My mom was diagnosed in February 2018 with advanced ALS. She hasn't lost the ability to speak, move, eat or drink but is on oxygen and has hospice. Is it too late for any type of treatment or clinical trials/drugs?

 

[Nikki J]

I am so sorry about your mom.

As far as clinical trials go you can look on clinicaltrials.gov to see what there is and what the criteria are. Search amyotrophic not ALS.

Most if not all trials exclude people with compromised breathing either saying no bipap or giving a value for svc or both. Feeding tubes are another exclusion often. Time since symptom onset or diagnosis date are also exclusions which probably would not be a problem. Other comorbid conditions also can be a reason.

Having said all that even if you found something is this the way she should be spending time and energy? Clinical studies are tiring and more often than not involve tests that can be uncomfortable. I think all the trials currently have a placebo arm. And they are trials because we don’t know yet if the trial drug will help. Especially in early phases it could also hurt. Even drugs that have been tested in other populations can have unexpected effects in PALS

Again I am sorry

 

[Vincent]

Just a question. Why is your mom on oxygen. TAhat is not indicated for treating ALS. Low oxygen in ALS is a sign of ventillatory insufficiency, not gas exchange issues. With compromised breathing in ALS carbon dioxide builds up in the blood because you can't exhale it out. The only thing oxygen does is mask the carbon dioxide build up. Proper treatment is with a bipap with volume sufficient to clear the carbon dioxide. Too much CO2 can effect the organs, heart and brain. It can also cause progression to speed up. Time to have her seen on an ALS Clinic.
Vincent

 

[mdaniela]

Hi Vincent. I believe the oxygen is for the hypoxia caused by COPD. She also has atelectasis. Would an ALS clinic be better than hospice? Even at this stage? She doesn't however have health insurance which I'm assuming would be a problem for the ALS clinic?