Has anyone experienced communication difficulties, speech and texting, halfway through 6 monthly chemo? Came on suddenly.
communication: Has anyone experienced... - Glioblastoma Support
communication
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positive64
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Hi there my husband did not manage to do the 6 months of chemo but 18 months on he's still here and we used a company in London called care oncology so he's been taking mebendazole, Metformin and atorvastatin and we can only trust that these are working as he had a craniotomy in mar 2022 the 30 days of radiotherapy and tablet chemotherapy and nothing else from the NHS - he was diagnosed with the grade IV glioblastoma small cell unmethylated so the worst 🤔
Hi it has been a year now had 80% tumur removed had radiation and Chemo I must say I am feeling good looking well, the only thing is 2nd week after having chemo I am weak and tearful. All through somerimes very wonky and unbalanced. Sometimes I feel that I cam going to fall over. But mostly stopped sugary things I eat lots of salad, meat fish eggs. No carbs if I can help it. Very strict diet. After radiation I had a mark which was 1cm then grow to 1.5cm. Changed diet now for three months there is no change. I sleep with a hat on at night, in a slim panty liner I use castor oil. Every night religiously and drink Sour sop tea and mornings tea. I am doing well keeping positive and thankful for being alive every day really important, when able I try and go for walks. However I do get tired. Hope this helps! Keeping active when you can is also very good. Well done to you x
My husband had great difficulty texting. It was absolute gobbledegook! He blamed his phone but I could text from it fine. There were no problems with his speech though. Sadly he passed away exactly 1 year ago today, but he fought a brave fight for 19 months.
Sorry to hear this, take care of yourself xx
I so appreciate you reaching out. We are all in different stages and some are patients and some caregivers. I hope you can continue to feel his love. ❤️
Hi there,
My mum has had this come on suddenly just before her third round of chemo and just before her 3 month post operative scan. Please do let me know how you are doing and what your medical team have said, the specialist said tiredness and fatigue but this is the second time she is going through treatment and she hasn’t had the speech problems so extensively before. Take care.
Hi appointment next week with oncologist I will keep you updated. Thank you
Hello, GP advised swelling in brain can cause stroke like symptoms. Steroids to reduce swelling have improved speech and texting. Will await next scan results 🙏🏻.
Hi there thanks for keeping me updated, I am glad to hear this will be resolved by steroids for you. My mum has swelling and is recovering in hospital after a procedure to relieve this. Take care
It, has been a year now had 80% tumur removed radiation and Chemo I must say I am feeling good looking well, the only thing is 2nd week after having chemo I am weak and tearful. All through somerimes very wonky and unbalanced. Sometimes I feel that I cam going to fall over. But mostly stopped sugary things I eat lots of salad, meat fish eggs. No carbs if I can help it. Very strict diet. After radiation I had a mark which was 1cm then grow to 1.5cm. Changed diet now for three months there is no change. I sleep with a hat on at night, in a slim panty liner I use castor oil. Every night religiously and drink Sour sop tea and mornings tea. I am doing well keeping positive and thankful for being alive every day really important, when able I try and go for walks. However I do get tired. Hope this helps! I did have speech therapy and mobility help when I came out of hospital. I would suggest put on some songs on and sing. Keep active.
These were my exact symptoms which led to diagnosis. Left frontal lobe glioblastoma. What a shock!!!!!!!
