Temozolomide

Hi Leah

My only experience of TMZ is watching my husband take it for 6 weeks while he was also undergoing radiotherapy. Because he was receiving both at the same time its hard to say which impacted how he felt.  In general, he felt fine. The first 5 days of the TMZ he took quite a strong anti-sickness drug on the advice of his CNS. During that time he never felt sick. Over the next few weeks he wasn't complaining of feeling sick except for the last week or so.  By that time he was very fatigued so that may have impacted it. He was certainly relieved when the course was done.

I'd suggest you voice your concerns to your dr and let them advise on the possible side effects and on what they can do to alleviate them. Everyone reacts differently to these drugs so I'm not sure there is a one size fits all answer.

Hope that helps a little or if nothing else prompts other members of this group to add theit thoughts.

Hang in there. Stay strong.

love n hugs

Wee Me x

Hi Leah

Sorry to hear that you are feeling unwell following your radiotherapy.

My husband coped well with the 6 week chemo/radio treatment. He only needed the anti sickness tablets when his dose was increased on the 6 month cycle of 5 days of TMZ in every 28, which has just finished, taking anti sickness tablets each morning and evening.  

Two things to think about - your level of resilience will vary throughout your treatment, and over a prolonged period there will be an incremental build up in the chemo (and the associated side effects) throughout each cycle. Everyone experiences a combination of good and bad weeks, days and hours - and symptoms which vary throughout the course of the treatment.  It is sometimes difficult to understand what is happening in isolation, however, the most important thing, from my husband’s perspective, is that many of these side effects are probably as a result of the treatment and are likely to reduce over time, rather than being indicative of a progression of your cancer.  Therefore, be positive, stay strong and focus on the advice from your oncologist, rather than getting ‘spooked’ by your own (understandable), but very often misplaced concerns.

Thank you so much for taking the time to write this. I think I’m feeling a bit better about things, I think more than anything it’s a bit daunting not knowing how long the fatigue is going to last. Thanks again xx

Hi Dawn, thank you so much for taking the time to write this, some really good advice and things to think about. I’m definitely experiencing the highs and lows of my ability to be resilient, I’m normally very positive but the fatigue can be so overwhelming. Thanks again for writing xx

Hi Leah 

My husband dictated most of this and found it really cathartic as he hadn’t had a great day until then!  A close friend of mine, who is a health professional with specialist knowledge of head trauma, warned me about fatigue and how it hits you like a brick wall.  When it hits, my husband goes to bed for a few hours to recover.

I hope that by sharing our thoughts, you will have the strength and positivity to fight on.  I only recently joined this forum and actually find it quite comforting to know that we are not the only people going through this testing journey.  Stay strong, listen to your body (which my husband now does after 9 months!) and try to remember that the lows will pass.  Don’t be afraid to speak to friends and family - my husband has found this support invaluable.

Take care x

So kind, thank you x