Hello,
I’m hoping that someone can help me understand the situation that my husband is currently in. He has right temporal AA3 that was 80% respected in July 2016. He did Proton radiation. With 6 months of Temozolomide. He also did immunotherapy vaccination at IOZK. He has not been doing any treatment since February of this year when he decided that he didn’t want to use Optune for a little while. His scans have been looking good and his NO said that she felt what remained was “treatment effect.” In June he suffered from a grand mal seizure that we attributed to cutting back on seizure meds. August’s MRI showed what his NO called leaky blood vessels but nothing too serious. November’s MRI was moved up to the end of October because he fell down. It showed a soap bubble lesion in his cerebellum and brain stem area. A PET scan made her feel confident that it wasn’t tumor recurrence but treatment effect. She didn’t say radiation necrosis even though he is at the two year mark of finishing radiation. She prescribed 4mg of Dex and then had him taper to 2mg. After a week or so of 2mg, his right chin has started to be tingling. She upped his Dex to 8mg but it hasn’t touched his tingling symptom. What I don’t understand is how it took away the balance issues but won’t take away the new symptom of tingling. Are there other potential causes for this symptom that I’m not understanding? How could he have so much inflammation from late effects of radiation when he takes Longvida curcumin, WokVel Boswellia, Celebrex and Dex?? What questions should I be asking her? So far I’m being shut down until they do another MRI, either this Friday or next Wednesday. Any insight would be most appreciated!! Until then I’ll just go scare myself with google.
PS: I’m interested in hyperbaric oxygen therapy if it could help, but am scared it would wake up any more cancer cells.
Have you considered getting a second opinion from a different institution? Many people do this when there is uncertainty about what is going on, and sometimes its surprising how divergent the opinion will be from a different institution. UCSF and UCLA would be solid choices for a second opinion.
ReplyDelete"It showed a soap bubble lesion in his cerebellum and brain stem area. A PET scan made her feel confident that it wasn’t tumor recurrence but treatment effect."
ReplyDeleteTreatment effect from radiation usually occurs in the area that was irradiated, not in a completely different area. Was the original radiation field close to the brainstem or cerebellum?
I like your idea of getting a second opinion. I agree that those institutions would be great options for us. The lesion is in the radiation area. My understanding is that it’s on that innermost edge where the proton energy dropped off.
ReplyDeleteI agree you could/should find another oncologist that might be more talkative and explain things better?
ReplyDeleteHow was the Proton vs "standard" radiation chosen? Do you remember?
We chose Proton because we had a facility within driving distance, insurance covered it, and we were hoping to spare as much healthy brain tissue as possible. I looked up the contact info for UCLA and will start figuring out what to do for a second opinion through them.
ReplyDelete@Christine; Do you mind sharing an update for benefit of us all. I am quite keen to find out how you controlled Inflammation. I am keen to start treatment at IOZK but with the massive tumour, inflammation related risk needs to be managed.
ReplyDelete