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Glioblastoma Grade 4: How do handle family conversations, sharing?
Brain Tumor | Last Active: Oct 5, 2023 | Replies (28)Comment receiving replies
On June 21 my wife was diagnosed with a brain tumor on her left frontal lobe. Prior to that she had no symptoms before June 16 when she had some strange twitching on the right side of her face. She had surgery to remove the tumor on July 6. Recovery from surgery was remarkable. No pain two weeks later and already walking two miles a day. Last week we got the pathology of glioblastoma grade 4. She is scheduled for radiation to begin July 31 and continue five days per week for six weeks. We meet an oncologist this week to determine if/when chemo will be used. Needless to say this has been a great shock as neither of us had any indication prior. We are both retired and my wife is an active 70 years old. She is in great shape as she walks 5 or 6 miles daily so we are hopeful this will help in her fight with the disease. I am very concerned with radiation side affects to my wife such as vision issues, or loss of mobility. I have also read about personality changes in some who have had brain radiation. Can anyone comment on these situations, or in general to our situation?
Replies to "On June 21 my wife was diagnosed with a brain tumor on her left frontal lobe...."
I understand your concerns exactly as my husband was diagnosed in Nov 2022 with a GBM. He is an active 69 year old. He did 6 weeks of radiation with concurrent chemo, which is the current standard of care for GBM. His vision did deteriorate a little and he had some eye strain during radiation - he just got his glasses prescription changed to compensate. He had some fatigue - a daily nap was good and needed.
Our doctors encouraged some level of exercise to relieve the fatigue. He had no mobility issues. He was able to still do a lot during that period, we just monitored his fatigue level and adjusted as needed. We will be praying for you and your wife - it is a busy period with the daily radiation and timing the meds with chemo. Take care of yourself too.
My very active 71 year old husband was diagnosed with an inoperable glioblastoma (left frontal, also described as insular) on April 19. He finished 42 days of radiation (chemotherapy was stopped after six days due to platelets dropping). He had no vision changes. The only side effects from radiation he experienced were fatigue, loss of normal taste (and he lost weight because of it), and hair loss mostly on the side of the tumor. Throughout radiation we continued our regular (3-4 times a week) walks (of four to five miles) and he continued to go to Planet Fitness a couple of times a week.
Radiation was at 1:00 pm and we usually got home around 2:30 or 3:00 (30 minute drive to Cancer Center.) After a short rest he was ready to meet our friends for our 4:30 walk. With the increased heat we now walk in the morning. Two weeks post radiation his taste is slowly returning to normal and he is enjoying food again.
All the best to you and your wife. I can tell you that our radiation oncologist and neuro oncologist both have said that regular exercise is one of the best things to help with side effects and prognosis for glioblastoma.
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Sorry to hear the news and diagnosis. Similar but different situation for me with my situation above. For me, chemo was added for 6 weeks of radiation and I'm going to maintenance plan of 5 days on, 23 days off. I do have slight blurry vision in my right eye, noticed after treatment one and it did get a little worse. Vision is manageable but different. I did not have any mobility issues. I did experience slight fatigue in the later weeks, frustrated easier, some anxiety, brain fog, and sleeping challenges. Most of this persists 3 weeks after radiation ended. I should exercise more so kudos to her!