New subscriber. I stumbled on to your channel. My brother was recently diagnosed with GBM May 4th this year to be exact. He's had 2 craniotomy's in 2 months. 3 weeeks after his surgery it doubled in size it grew back befor radiation treatment even started. How we knew tumor it progressed was that it affected is speech dramatically, hence and emergency surgery scheduled. He started radiation May 26th had MRI late on that Friday and June 2nd surgery. After he was discharged radiation immediately resumed that following Monday. So far so good- speech still clear. Memory still in tact (short term memory) but, he is quite forgetful. Lot' of details in between since event. Hoping that this first round of treatment is successful. Thank you for sharing your experience. Its been hard on the family but we are remaining hopefu and optimistic...can you share some resources you have found that you have utilized?
Please keep sharing your story and updating us. I have a family member who recently got diagnosed with GBM. They just finished surgery and will be starting chemo and radiation soon. You look great! Thank you for sharing and keep sharing please.
@@TheShapeGameGBM you look quite well for a person who underwent craniotomy, then chemoterapy and radiation therapy. Would you mind if i ask which type of a glioblastoma were you diagnosed with; primary (de novo) or secondary?
I had my first radiation today. We are on exactly the same regime. I had the had mould and everything the same, except it felt like way less than 10 minutes.
My mother rediation treatment is going on. I feel happy for you. Can you tell me your tumour size when you started your treatment of chemotherapy and rediation plz?
Hey William lovely to hear from you again. Your description of your radiotherapy was really helpful especially as I get very claustrophobic in MRI. You look so healthy and well. Do you find it difficult when you are feeling unwell but look so healthy having to explain to friends or family? I have a tumour but have not told anyone yet. It’s difficult to keep up the pretence of being okay all the time. Also I hope you don’t mind me asking if your left hand tremor is because of the cancer ?
Glad I was able to help! Awww, thank you. :) I feel so lucky that it isn't very obvious on the outside that I have cancer. Besides my scar of course! But some days when I am on chemo, my stomach is really hurting. I have had to tell friends and family that I just need to lie down. When it comes down to it they understand, but feel bad that they can't "help". If you wanna talk about your tumor more just let me know. I'd love to chat, even if it's just to cheer you up! My hand tremor was with me long before cancer, but because of all the meds I am sure it has gotten worse. Who knows. :)
Thanks for your reply. I go to the neurologist today for my latest MRI results to see if it’s grown in the last six months. They are not sure if it’s a metastatic tumour, I’m due a kidney scan to see if I have kidney cancer or if it’s a Schwannoma which is a nerve tumour. The not knowing is very difficult for me as I prefer to know everything the good, the bad and the ugly! You are so right about the chlostrophobia in the MRI I hate it and need to take Valium. I’m looking forward to your positive thinking video, I need all the help I can get! I’m from the U K so it’s interesting to see if the treatment is different , no Papa Joes here !
I’m so happy for you! My husband just had his tumor removed on March 31. He will have to go through chemo and radiation. After that they want him to wear a radiation scarf for 18 hours of the day. Did you have to do that?
@@TheShapeGameGBM Thank you for your feedback, I have a question about whether hair in the radiation-treated area will regrow normally? And does the chemotherapy drug temozolomide cause hair loss?
You are an incredible person for how you're keeping your head up through all this. Thank you for sharing all of this valuable firsthand experience.
New subscriber. I stumbled on to your channel. My brother was recently diagnosed with GBM May 4th this year to be exact. He's had 2 craniotomy's in 2 months. 3 weeeks after his surgery it doubled in size it grew back befor radiation treatment even started. How we knew tumor it progressed was that it affected is speech dramatically, hence and emergency surgery scheduled. He started radiation May 26th had MRI late on that Friday and June 2nd surgery. After he was discharged radiation immediately resumed that following Monday. So far so good- speech still clear. Memory still in tact (short term memory) but, he is quite forgetful. Lot' of details in between since event. Hoping that this first round of treatment is successful. Thank you for sharing your experience. Its been hard on the family but we are remaining hopefu and optimistic...can you share some resources you have found that you have utilized?
Please keep sharing your story and updating us. I have a family member who recently got diagnosed with GBM. They just finished surgery and will be starting chemo and radiation soon. You look great! Thank you for sharing and keep sharing please.
I hope they are doing well! Definitely feel free to ask me anything. :)
@@TheShapeGameGBM you look quite well for a person who underwent craniotomy, then chemoterapy and radiation therapy. Would you mind if i ask which type of a glioblastoma were you diagnosed with; primary (de novo) or secondary?
I start my 5days a week for 6 weeks tomorrow. This is comforting to me to know it’s not that bad. As long as I don’t forget my nausea meds. LOL
I had my first radiation today. We are on exactly the same regime. I had the had mould and everything the same, except it felt like way less than 10 minutes.
My mother rediation treatment is going on. I feel happy for you. Can you tell me your tumour size when you started your treatment of chemotherapy and rediation plz?
Hi, which type of Radiotherapy is best for GBM.
Hey William lovely to hear from you again. Your description of your radiotherapy was really helpful especially as I get very claustrophobic in MRI. You look so healthy and well. Do you find it difficult when you are feeling unwell but look so healthy having to explain to friends or family? I have a tumour but have not told anyone yet. It’s difficult to keep up the pretence of being okay all the time. Also I hope you don’t mind me asking if your left hand tremor is because of the cancer ?
Glad I was able to help! Awww, thank you. :) I feel so lucky that it isn't very obvious on the outside that I have cancer. Besides my scar of course! But some days when I am on chemo, my stomach is really hurting. I have had to tell friends and family that I just need to lie down. When it comes down to it they understand, but feel bad that they can't "help". If you wanna talk about your tumor more just let me know. I'd love to chat, even if it's just to cheer you up!
My hand tremor was with me long before cancer, but because of all the meds I am sure it has gotten worse. Who knows. :)
Thanks for your reply. I go to the neurologist today for my latest MRI results to see if it’s grown in the last six months. They are not sure if it’s a metastatic tumour, I’m due a kidney scan to see if I have kidney cancer or if it’s a Schwannoma which is a nerve tumour. The not knowing is very difficult for me as I prefer to know everything the good, the bad and the ugly!
You are so right about the chlostrophobia in the MRI I hate it and need to take Valium. I’m looking forward to your positive thinking video, I need all the help I can get! I’m from the U K so it’s interesting to see if the treatment is different , no Papa Joes here !
How did your scan go??
I’m so happy for you! My husband just had his tumor removed on March 31. He will have to go through chemo and radiation. After that they want him to wear a radiation scarf for 18 hours of the day. Did you have to do that?
❤❤❤
can you tell me the name of the drug, what are the chemotherapy drugs you took?
Temazolamide! I can't remember the anti-nausia meds at this moment.
@@TheShapeGameGBM Thank you for your feedback, I have a question about whether hair in the radiation-treated area will regrow normally? And does the chemotherapy drug temozolomide cause hair loss?