Temozolomide Side Effects

[Casper438]

My dad is on his 2nd cycle of TMZ (300mg)5 days on, 3 weeks off regime. He had GBM located on his left frontal lobe but due to size and depth could not be operated on. Therefore he had 3 weeks of radiotherapy along with 155mg daily TMZ. He has poor speech and his right arm is paralysed. However this week on the TMZ his speech is much slower and slurred and he is limping on his right leg quite considerably. He takes 2mg daily of dexamethasone which his oncologist want to reduce to 1.5mg in another weeks time. I wondered if anyone had an exacerbation of their symptoms whilst on their Chemo and if it settled down. Also did the TMZ actually help shrink anyone’s tumour or only help to stabilise it. Any advice would be very much appreciated. Thank you

[RMDF]

Hi Casper, Sorry to hear about your Dad. My husband was diagnosed in May 2022, they removed what they safely could of the tumor, with words stating..when it comes back. Then he did 6 weeks of radiation with the TMZ, 400 mg daily, then June of 2023 had reoccurring tumor removed..which was deeper and did make his aphasia, walk..with the right leg drag at his most tired times, and somewhat confusion..which all worsens up and down..this time he did 3 weeks of radiation and Lumostine 140mg every 6 weeks, he's done 2 cycles..so far..hasn't been able to do the 3rd..because of extreme exhaustion, confusion, etc. He also has taken several weeks of different amounts of dex; he is currently off all dex now..seems not too make much difference in energy level. This cancer is such an ugly one, which every tumor type and location makes the difference in recovery and symptoms. I wish your father the best, and your family. Being there for your Dad is the best medicine for him. Prayers to you all. Reach out if you'd like. Also..his last mri shows enhanced but not much change..so Dr thinks past treatment is possible making all his symptoms as they have been worsening, she says that can play a factor down the road as well with the cancer.

[Casper438 in reply to RMDF]

Many thanks for the reply. I completely agree that although it can be the same type of cancer, the size, depth, location etc can make individuals experiences worlds apart. It is the relentlessness of this disease which is all consuming as if my dad has not actively been on treatment he has been waiting for next round to start or living in 3 months cycles until next scan. I am delighted we all got to spend Christmas together. I don't know what 2024 has in store but I can go into it with dread and trepidation or positivity and hope. I chose Hope! I wish you and your family well x

[Paulton]

hi Caspar I am sorry to hear about your dad. I have grade 4 glioblastoma multi form in the right paretal area. I had a craniotomy to remove the large tumour in February 2023, followed by 6 weeks of radiotherapy and TMZ together, then I started 6 months of TMZ 500mg but my tumour came back so this was stopped and my chemo changed to lomostine. I’ve also been taking the steroid dexomethasone which I am currently being weaned off of. I will know mid Jan how the lomistine is working with my latest mri scan results. I really think a positive mental attitude helps. I do not spend time worrying about my diagnosis. I cannot fix it so I don’t think it’s a good use of my time to worry . I have reduced my sugar and carb intake and will continue to reduce these further . I don’t eat processed foods or red meat, this is what I can do to help myself, I can’t walk too far because I get breathless due to steroids and weakness on my left side both of which have improved. I do go for a walk every day so this is how I help myself.

Don’t allow this to define your husband or let it take over every aspect of your life. Be positive, make memories, do as much as you can together. Some things you will do differently but you can find a way. I wish you both the best

[Casper438]

You're absolutely right, put energy into living instead of worrying about what can't be controlled. I guess none of us know what tomorrow will bring so take each day at a time is not a cliché but instead a really practical and useful piece of advice. I wish you well for this coming year and positive news for your MRI.

[Manty54]

hi Casper and Paulton, I’m praying for all of us this new year to bring happiness and health. My husband did the surgery on December 2nd and we are going to start chemo and radiation next week. Hopfully it works, and we can have more time with him. My kids really need their dad. Meanwhile we are trying to stay positive and make more memories but it’s very hard. It’s a terrible disease I don’t wish it on anybody. God please help all of us go through this. Amen🙏🏼