One patient with glioblastoma still alive nine years later
by future2020 on Wed Dec 26, 2012 01:06 PM
On the night of December 18, 2012, my husband fell down and I could not get him up. He said he felt dizzy and lightheaded. When my daughter arrived, we were able to pick him up and take him to Emergency. CAT scan showed bleeding around the tumor. He was Air evac’d to Inova Hospital in Fairfax, VA, where his neurosurgeon practices. MRI showed tumor growth from 5cm (Oct 2012) to 7cm (Dec 2012), tumor swelling and bleeding. He was immediately put on 18 mg of Decadron (6 mg every 8 hrs.) to bring down swelling. Platelet count still very low (19K) and surgeon requires 100K before he will perform second craniotomy. They gave him platelet transfusion of two bags: platelet count up to 97.
Platelet transfusions are only a temporary fix, since transfused Platelets only live 2-3 days in the blood, while our own plantlets that we make in our bone marrow, lasts 7-10 days. Surgery cannot be performed now, since even with a temp fix of transfused platelets, he could still ‘bleed out’ in the brain AFTER the surgery.
Radiation Oncologist will be performing radiation therapy again (10 sessions over three weeks – focused only on the tumor itself and not the surrounding tissue), in the hopes of slowing down the tumor growth while we wait for platelet count to rise to 100K. Radiation does not impact platelet count.
My husband came home with a walker and can no longer walk unassisted. His balance is shaky and he has double vision when he gets over-tired. I count my lucky stars that he is still cognizant, and aware. We can still talk and laugh. We started the Decadron decrease today. I am watching the man I love with all my heart, struggle, but still be so strong in spirit. I envy his strength. I know others on the board have more serious problems with their GBM stricken loved ones. I fear what is to come.
by jon4156 on Wed Dec 26, 2012 02:32 PM
Sorry to hear about this development and hope that the radiation has some good effect against the tumor.
by angel1959 on Wed Dec 26, 2012 03:06 PM
I pray that he gets better when you said that you are watching him and by his side that made me feel good because i stood by my husband also they need you no matter what i lost mine a few monts ago on October 30th and i know how hard it is he had lung cancer and brain mets and was on hospice for 5 months he fell also because of balance issues and i wonder today how i picked him up but god gave me the strength hang in there he will stay stong for you and his family mine did
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