failed treatments

Posted by cheekyinpa @cheekyinpa, Sep 3 7:32am

My son has been told he's not a candidate for stem cell or BMT
He has CML/ALL and has failed oral chemo meds, they work awhile then he goes into blast phase, we have been in the hospital a few times since January 2024
Anyone else had this happen and what have you done?

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Lori, Volunteer Mentor | @loribmt | Sep 3 9:06am

Hi @cheekyinpa. I’m sorry to read that your son isn’t responding well to his current oral treatments for CML/ALL. Has your son’s doctors discussed alternative treatment plans beyond oral chemo such as conventional chemo or the possibility of Clinical Trials?

cheekyinpa | @cheekyinpa | Sep 3 10:34am

In reply to @loribmt "Hi @cheekyinpa. I’m sorry to read that your son isn’t responding well to his current oral..." + (show)

We are supposed to start immunotherapy infusion today.
At first they mentioned the possibility of a BMT or SCT then said they didn't think he could handle the chemotherapy, also Car-t has been mentioned
We have not sought out second opinions as of yet, not even sure where to start, currently we are hospitalized at Topper Cancer Institute in Allentown PA

Lori, Volunteer Mentor | @loribmt | Sep 15 11:31am

In reply to @cheekyinpa "We are supposed to start immunotherapy infusion today. At first they mentioned the possibility of a..." + (show)

Sorry for the delay in response, @cheekyinpa. I’ve been playing hooky the past couple of weeks recovering from Covid…it finally caught me after avoiding it for years!

How is your son doing with his Immunotherapy infusions?

cheekyinpa | @cheekyinpa | Sep 15 1:31pm

In reply to @loribmt "Sorry for the delay in response, @cheekyinpa. I’ve been playing hooky the past couple of weeks..." + (show)

He is doing well so far no bad side effects, and blood work and spinal fluids look good, we are here for 28 days to continue infusion of the blinatinib then hopefully home with a pump which we will need switched out and checked every week

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