After the good news of no evidence of decease re-occurence after my LUL lobectomy, I got the unwelcome news the actually metastasized to my brain with EGFR G719A and S768I.
These apparently are rare mutations and was offered to participate in a clinical trial for Osimertinib as third-line treatment. this trial of course will be after the the standard first line treatments of Osimertinib, followed by chemo as second line treatment.
The Clinical trial will be to “rechallenge” the mutation with another round of Osimertinib.
Does anyone have some experience with Osimertinib or even participated in clinical trials?
Hi @RVA - although I can't speak to Osimertinib, I can tell you that my husband participated in one trial through Sunnybrook for colorectal cancer which lasted 7 months and has recently met with doctors at Princess Margaret about other trials available. His decision after hearing more about PMH's trials (there were two) is not to pursue them.
So why did he go ahead with one clinical trial but neither of the others? The first trial was for a process that isn’t commercially approved in Canada yet but gained FDA approval in 1970. This means a lot of data has been collected on the benefits / success rates as well as known side effects. When looking on Dr.Google I found medical journals online and lots of information about the entire process on several North American hospital sites. It was easy to weigh the risks vs the advantages for our situation. The discussions also started less than 6 months into my husband's diagnosis and we were eager to try anything that might lead to No Evidence of Disease.
In terms of the PMH trials, they're considered ‘early Phase I’ and are only expected to stop disease progression for 3-4 months if accepted into the program. One of the trials has a 50% chance participants will get the drug being tested while the other 50% get a known drug. If you get the drug being tested, it's considered aggressive and brings a series of risks and side effects with it. While you can say everything has a risk, it's unnerving to hear words like ‘liver failure’ and ‘lung issues’. They assure us they'll be able to help get the patient through the ups and downs but since we live an hour and half away we didn't feel it was worth it. Plus my husband is tired of feeling tired and crummy. He's now aiming for quality of life, not quantity.
There's lots to consider when looking at trials and so much depends on what you want out of it and what you're willing to put up with. Good luck in your decision, it's not always an easy one to make.
Every conventional treatment began as a clinical trial. I participated in a clinical trial myself (different drugs from yours) after a recurrence of my unknown primary cancer in 2018. The reason for the trial was to avoid a 4th surgery for my unknown primary cancer, and if it worked, a lifetime control of my disease. The trial failed, I had severe side effects, and I had the 4th surgery as a result. I chose to participate in the clinical trial because, to me, the benefits outweighed the risks
Many times we as patients are offered a clinical trial when the conventional therapies are exhausted or have failed to control our disease. I always say to weigh the risk / benefits of participating or not from information supplied by your medical team.
I agree with what @RBION said in her post about why her husband participated in one trial, but declined another. The risk / benefit and quality and quantity of life all need to be but into perspective.
I wish you well, and hope my post helps you in your decision making process.
I did find a clinical trial from Korea that reported good results with it. https://pubmed.ncbi.nlm.nih.gov/31825714/
And good on you for looking at the clinical trial. So many folks don't for a variety of reasons but not only is it a nod to better treatments in the future but it is often a way to access leading edge treatments.
Has any one talked about radiation? Brain mets are often treated this way.
Good luck and great question.