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Well, once again it has been a while since I posted anything. I had been getting Temodar along with Stereotactic Brain Radiation until the beginning of June, when I went to Hopkins to see Dr. Sharfman. I pointed out several bumps and lumps on and under my skin. He replied that the Temodar didn’t seem to be doing much good and discontinued it. He ordered a new brain MRI and noted that if my brain was stable there was a trial he could possibly get me into.
Well, I went for the MRI and when they got me off the table the radiologist was waiting to talk to me. This MRI was significantly worse than the one I had received in late April. There was a 3.5 cm growth on the front of the right ventricle, as well as several small lesions in the left cerebellar hemisphere. More stereotactic radiation was planned, and another “fine cut” MRI was ordered. That MRI revealed multiple small cerebellar lesions, and the radiation oncologist recommended whole brain radiation. We decided at this point that would be the prudent course.
I had been cautioned about WBR but I had no idea the toll it would take on me. I largely cannot stand or walk by myself. As of today I am 10 days past my last treatment and for 6 of those days I have been totally dependent on my wife to get up, down, and around the house. That’s partly due to weakness and partly due to a lack of confidence about my balance and strength. Thank goodness my wife is an RN and has some experience in the area, even though she has never been involved in oncology nursing. It’s also fortunate for us that she has been able to take time off work to help with all of this.
But bottom line, I’m still here, still fighting the fight. As Hank Williams sang, “We’re still a living, so everything’s ok.”
Oh, Bill! So sorry for the continued misery!! Good grief!!! Hang in there. Any chance your lumps and bumps could be treated by an intralesional? Bless you and your wife. You are an inspiration. Yours, celeste
Brother Bill, havnt heard from ya in a while, glad you surfaced, i keep a book of our names since i started with MRF…
DAMN THESE LIESONS! i have a few new ones to Bill since we last chatted, Butt Cheek Muscle, Sigmoid section of Intestine, and a baseball size tumor at the surface of my skin on stomach, left side under ribcage…and, the ol’ Lung monsters you know about…Thank God for your wife man, i to have a solid woman behind me taking great care of me…continue your strength Bill, baby steps when you walk, dont get crazy and push yourself….
Really sorry to hear this when you have been through so much already. I hope the treatment is working for you and you are back on your feet as soon as possible
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