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My Husband's journey with Glioblastoma

Brain Tumor | Last Active: May 12 1:04pm | Replies (169)

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@djw

I am late in posting a summary of recent events, but in this case it is good news. The results of the MRI that my wife Anne had on Dec 26- "do not show any evidence of tumor growth" We were very happy with that result. With the approval of Anne's oncologist we headed south to Arizona where we hope to stay until late February. Anne has to be back in Kansas City for the next MRI on Feb 27. She will continue with her Jan and Feb chemo cycle here in AZ. are cycles 4 and 5. Physically she is doing ok with the exception of the chemo week and half of the following week when she begins to recover. There has been much confusion and back and forth with medical personnel regarding her chemo dose. It was finally agreed to be 180 mg per day during the 5 day cycle. Anything more that that and the side affects of weight loss, memory impairment and balance are too severe.
I must say that anyone going thru severe health issues of any kind must have a representative present to assist them during the process. It is necessary in order to convey to medical personnel a proper summary of results. It is also necessary to avoid errors and a sense of balance in dealing with medical personnel. I don't know if those personnel are over worked or what, but we had several incidents that would have led to problems had I not challenged what was being said. I don't see how any patient in these situations can adequately represent themself, especially when they have some impairments to begin with. Sorry for the side rant.
Anne and I actually took a walk yesterday of almost a mile. Today we went to the library and she got some books for reading. We are both extremely grateful for this additional time God has given us. We are thankful for the assistance of family and friends. We are thankful for the prayers. Our prayers go out to all others in similar situations.
Dan

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Replies to "I am late in posting a summary of recent events, but in this case it is..."

I’m so happy for you and your wife. It’s great news that the MRI didn’t show any tumor growth and you can spend sometimes in Arizona. I hope she continues to improve and get better. As for my husband we are still waiting for insurance authorization for radiation which sucks. His condition is deteriorating. He is becoming very imbalanced and starting to have hiccups these are all the signs that he had before surgery that got him to ER. I’m so nervous thinking that maybe the tumor has come back and we are going to go through chemo and radiation for no reason just for more torture 🙁
He had his surgery on December 2nd and is going to start chem/rad on January 18th. Is this too
Late. They keep telling me that it is not but I’m thinking it is. The radiation doctor did a CT with contrast to do the planing and when we asked him if there is any changes he said nothing significant. So why is he getting worse? God, how can I wait another 9 days for the start of the treatment? Waiting impatiently! Hope everyone else is in better situation. We are praying for everyone. Nobody should go through this.