Thank you so much for the video. My dad is currently undergoing the same treatment, though, tbh he has some major side effects like weakness on one side of the body, major fatigue and struggling to process information. But still, great to see you went through all of this stuff. God bless you! ❤
The journey can often be tough, scary, and dark. But as long as you stay positive and don't let the unhelpful worries cloud your mind, it will be much better in the long run. There are many things we cannot control, so why fill our mind with these things? Better to enjoy the company of those we love, then to worry about a life filled with sadness. You guys have got this!
Thank you for making this. I just finished radiation at st jude and am starting temozolomide tomorrow. This really helped me be less worried about starting this new chemo drug.
That's exactly why I made this channel! I wanted to take the scary, technical, and complicated side and convert it into content that is easier to digest. And hopefully more friendly and positive!
Thank you for creating your channel! I was recently diagnosed with grade 4 GBM 05/19/2020 and today I started my first round of chemo and radiation with Memorial Hermann. You definitely helped to ease my anxiety before starting. Forever grateful!!!!
I took some anti constipated oil thing you can buy at the pharmacy, was easy and made it alot better. I didnt much side effects from TMZ and its really nice that you can take it at home :) Good luck man.
Thank you for this video, my dad is going through the same, he is taking the chemo medication for 5 days every month for 6 months! I want to ask you if you do any MRI after every month of taking the chemo or any other analysis ! Thank you again your video was so helpful
I Start tomorrow of 6 weeks chemo and radiation for 6 weeks 5 days a week. A little scary even though I have been through 2 brain operations :) Also have you considered Cannabis for the anti nausea and appetite? I've read it can assist the effect of radiation as well. There is a program is Australia I'm going to ask about.
Hey Jeremy 2x brain operations here aswell. I just finished 6 weeks of radiation and starting 6 weeks of chemo February. Would love to hear how everything turned out for you. Get at me
I share the same situation as you for GBM. I will be trying Avastin with temozolomide very shortly. I hate the nusea with 400mg dose 5 days out of the month. Keep up the fight sir
the thing no one mentions is the constipation. I went through cycle 1 with 300 mg of temozolomide and was unable to poop until day 5.. I was not up for it and was literally exhausted by the time i was done. starting round 2 and moving up to 380 this cycle. Just ran across this. hope you are doing well.
Thanks for the video. I think I know the answer to this based on how you look, but what about hair loss / thinning? I've been told that Temozolomide is better than other chemo drugs in that regard, but then I read where some 69% of users had hair loss. So, not sure what to believe.
Definitely a lack of energy. Some days it didn't seem to affect me, others it did. Diet was very important for me. Eating unhealthy food when you're not on this kind of medication already slows you down, but taking these meds and eating unhealthy food really trains your energy. Eating stuff like roast chicken, grilled salmon, etc these things should help you with those energy problems. I learned those lessons too late, so hopefully it can help you!
From my recollection of that time in my life, it's not too bad if you take care of yourself when it comes to eating healthy. I made a lot of mistakes while on chemo, and would eat greasy food. If you take care of yourself, it won't be too bad. The cramps are the worst, but once you're done with chemo you don't have to deal with that anymore!
Hey I’m 17 starting temodar chemo tonight overall what were your main symptoms of the drug ? Did u always get sick cause of the low white cell blood count? Trouble sleeping ? Nightmares? Would appreciate it thanks for the videos💖❤️
In my case I felt that way for sure! You get stomach cramps and not fun feelings in the body an hour or so after taking it. So being asleep while all that happens definitely helps.
@@prankurverma2975 at this point I have had two major brain tumor resection surgeries along with VP shunt installations and troubles requiring revisions November hit really hard I caught a staff aureus infection on two lobes of the brain frontal and occipital landed in the hospital for 41 days 35 days and intensive Care unit but I seem to be doing okay
Thank you so much for doing these videos because it gives me hope, information, and peace after my own diagnosis
Thank you so much for the video. My dad is currently undergoing the same treatment, though, tbh he has some major side effects like weakness on one side of the body, major fatigue and struggling to process information. But still, great to see you went through all of this stuff. God bless you! ❤
The journey can often be tough, scary, and dark. But as long as you stay positive and don't let the unhelpful worries cloud your mind, it will be much better in the long run. There are many things we cannot control, so why fill our mind with these things? Better to enjoy the company of those we love, then to worry about a life filled with sadness. You guys have got this!
Thank you for making this. I just finished radiation at st jude and am starting temozolomide tomorrow. This really helped me be less worried about starting this new chemo drug.
That's exactly why I make these videos! So that those going through this can hopefully feel a little better. :) Glad I was able to help you.
I’m taking my Temodar too tonight
@@Mia-bf5qt how is it going for you x
*sigh* finally. Someone's personal experience.
That's exactly why I made this channel! I wanted to take the scary, technical, and complicated side and convert it into content that is easier to digest. And hopefully more friendly and positive!
Thank you for creating your channel! I was recently diagnosed with grade 4 GBM 05/19/2020 and today I started my first round of chemo and radiation with Memorial Hermann. You definitely helped to ease my anxiety before starting. Forever grateful!!!!
How’s it going? Your symptoms?
Hi, How is your treatment going. My dad has been diagnosed with GBM grade 4. We are really very scared.
@@mailmehtiimger I hope your dad is healthy now...did he face any surgery or biopsy mm
How are you lorrie
How are you now?
I took some anti constipated oil thing you can buy at the pharmacy, was easy and made it alot better. I didnt much side effects from TMZ and its really nice that you can take it at home :) Good luck man.
What is the name of it? I'm starting tomorrow.
Thank you for this video, my dad is going through the same, he is taking the chemo medication for 5 days every month for 6 months! I want to ask you if you do any MRI after every month of taking the chemo or any other analysis ! Thank you again your video was so helpful
Hello ! Hope he is doing fine I just want to ask what side effects did he face after taking 5 cycles ?
Thank you for sharing. I lost my appetite for eggs and steak during treatment. Hoping you're right and it comes back between each month!
My boyfriend is taking this. Thank you for sharing your experience. I hope you are doing well my friend 🩷
I hope your boyfriend is doing well! I'm doing great, just trying to enjoy the little things. That's what life's all about 🥰
I Start tomorrow of 6 weeks chemo and radiation for 6 weeks 5 days a week. A little scary even though I have been through 2 brain operations :) Also have you considered Cannabis for the anti nausea and appetite? I've read it can assist the effect of radiation as well. There is a program is Australia I'm going to ask about.
Hey Jeremy would love to hear how your going we are also in Australia
Hey Jeremy 2x brain operations here aswell. I just finished 6 weeks of radiation and starting 6 weeks of chemo February. Would love to hear how everything turned out for you. Get at me
I share the same situation as you for GBM. I will be trying Avastin with temozolomide very shortly.
I hate the nusea with 400mg dose 5 days out of the month.
Keep up the fight sir
How are you now?
jeeez that's a big dose, I only got 130mg
the thing no one mentions is the constipation. I went through cycle 1 with 300 mg of temozolomide and was unable to poop until day 5.. I was not up for it and was literally exhausted by the time i was done. starting round 2 and moving up to 380 this cycle. Just ran across this. hope you are doing well.
Wow you are still laughing and so optimistic. Really inspiring and gives me Courage for my own Treatment
😊 wow, thank you! If I can do it, you can too! I believe in you. :)
Thanks William for another informative and interesting video. You could try Movacol to help your constipation. Keep well and positive!
Thank you! I'll definitely look into that. Keep up your positivity too!
Another great video. Thanks for sharing.
Thank you for sharing. You are an angel!
😊😊 thank you!! Honestly this makes me smile
Thanks for the video. I think I know the answer to this based on how you look, but what about hair loss / thinning? I've been told that Temozolomide is better than other chemo drugs in that regard, but then I read where some 69% of users had hair loss. So, not sure what to believe.
I imagine if you have a grade 4 brain cancer, hair loss would be the very least of your concerns..
Started my temozolomide today. 295mgs for 5 days for 12 months. Giddy-up!
hows it going? I start Monday for 12 months too
Glad your doing well brother thanks for the videos am about to start 240mg for 5 days a month
Are you ok now ?
any problems with lack of energy? while on temo?
Definitely a lack of energy. Some days it didn't seem to affect me, others it did. Diet was very important for me. Eating unhealthy food when you're not on this kind of medication already slows you down, but taking these meds and eating unhealthy food really trains your energy. Eating stuff like roast chicken, grilled salmon, etc these things should help you with those energy problems. I learned those lessons too late, so hopefully it can help you!
I start this Monday now for 12 cycles
Great video, very informative! Also nice brutal tunes
0:13 I started to take this Monday did it work for youtemozolomide I do 2pill a day and capecitabine
My mom will be starting Temozolomide I hope it works on her 🙏
How are your mother now?
Hello...have you noticed hair loss while on this type of chemo?
Did the nausea / stomach pains resolve after off treatment
Hey we should talk. My brother is on better anti nausea drugs. He’s on the same path. One chemo at night and one in the am so you’re not sick.
Definitely! I have a Twitter account, feel free to DM me about anything! TheShapeGameYT is the username
Starting my dual therapy next week for first time not looking forward to my new routine at all
From my recollection of that time in my life, it's not too bad if you take care of yourself when it comes to eating healthy. I made a lot of mistakes while on chemo, and would eat greasy food. If you take care of yourself, it won't be too bad. The cramps are the worst, but once you're done with chemo you don't have to deal with that anymore!
@@TheShapeGameGBM thx
Would love to know if you lost your hair
I did not! The hair they shaved before surgery took a little longer to grow back though.
Great thank you my daughter is starting chemo and radiation at the age of 22 as well fuckcancer keep fighting brother x
How are you going o just also following you on Instagram needing all the advice we can get atm she will also start on temdor
Hey I’m 17 starting temodar chemo tonight overall what were your main symptoms of the drug ? Did u always get sick cause of the low white cell blood count? Trouble sleeping ? Nightmares? Would appreciate it thanks for the videos💖❤️
Hey Mia ,I wish you are doing well..how much mg you are taking of temozolomide??
❤❤❤❤ thank you for your videos
2 weeks TYTMZ absolutely no side effects
Wow! That's amazing!
I I have to started it Monday
Is it better to take temozolomide before bed?
In my case I felt that way for sure! You get stomach cramps and not fun feelings in the body an hour or so after taking it. So being asleep while all that happens definitely helps.
Question did you lose Hair ?
I did not! My hair still got longer as well, but at a slower rate than before.
You are on chemo and had radiation. How did/does your hair look that good???
I don't know! I think it's just luck. I never delt with any side effects revolving around hair.
@@TheShapeGameGBM Are you in remission?
Did you get seizures?
Thankfully no!
@@TheShapeGameGBM seizures really have been the worst part of this for me. They can really mess you up for even weeks
My dad had gbm he passed away last year so sad
I'm sorry for your loss. :(
I recently had taken 200 mg of this stuff for 30 days ... for GBM . I found this stuff made ya tired and my taste buds tasted like I was eating metal
Were you provided radiosurgery include with temozolomide??
How are you at recovery now??
@@prankurverma2975 at this point I have had two major brain tumor resection surgeries along with VP shunt installations and troubles requiring revisions
November hit really hard I caught a staff aureus infection on two lobes of the brain frontal and occipital landed in the hospital for 41 days 35 days and intensive Care unit but I seem to be doing okay
I am sorry for asking Which brain tumor do you have???
And why two surgeries...why didn't you go for Gamma knife surgery??
@@prankurverma2975 glioblastoma multiforme GBM
Ghar ma bap Bhai nhi