We have spent the last couple of weeks traveling to explore Clinical Trials for a recurrence of my husband's GBM tumor. At MD Anderson we were offered Val-083 (3 days of infusions every 21 days), Abemaciclib to target a CDK2NA copy loss and LIT surgery.
I still have not heard much about Val-083, pros or cons, side effects...
At Duke he was offered the polio virus and we very excited but as we were about to sign the paperwork and asked more questions about side effects our guts told us not to do it. We were told it will get worse before it gets better, inflammation is almost a definite and worsening of symptoms. My husband has had very little pain and wants to avoid it at all costs. We were told they have the dosage correct and can manage the swelling with Dex or a tiny amount of Avastin but we still did not think the risk was worth it. They also offered daily Temodar.
This brings us back to Northwestern where he is currently being treated. They have a Basket Trial of Entrectinib to target his FIG-ROS1 mutation. It is supposed to be have very low side effects. We were there Friday and still have yet to hear back from the drug sponsor to see if he is accepted. They inquired as to the actual location of his mutation.
I have read that cannabis oil is not a good idea with immunotherapies. Has anyone heard if there is a contraindication with kinase inhibitors?
Lastly I was curious when people stop cocktail drugs or supplements? I know a lot of the cocktails are designed to help radiation and TMZ work so I am wondering after you have done all the supplements and additional cocktail drugs and cannabis oil and Optune and positive thinking and everything else you can think of and the tumor still comes back, what do you continue? Do you believe that those treatments didn't help if the tumor comes back or did they maybe help a little and you should continue? There really is no way to tell. I also wonder this as many Clinical Trials make you stop all of the above.
Thanks for any insights. My husband is doing well but his tumor has doubled and spread in the last 5 weeks and his symptoms are getting worse so we need to make some sort of decision. Best to all.
Hello Dianne,
ReplyDeleteit is a personal decision on how aggressively you want to try to fight this disease, even if the outlook is not the best. If I remember correctly, Ben Williams had huge glioma, which didn't regress after radiotherapy. But he decided to keep on fighting. Came out victorious at the end. Sure, he was an extraordinary case - but I think if you don't try, you can't expect it to get better on its own.
If I will face recurrence, I will try everything available - starting with most promising trials. I don't follow the results so much at the moment, so maybe someone else can suggest a trial. I think the best trials now are Toca and Polio trial.
Hang in there!
Once again. Although there is still debate, according to my insights and experiences there is no conflict between the melatonin - cannabinoid system stimulation in the brain and immunotherapy.
ReplyDelete