I’m starting both radiotherapy and chemotherapy (temozlomide tablets) in just over a week and I’m feeling more and more nervous about the side effects of both.
I’m having this done 2 months after I had brain surgery to remove my astrocytoma which has been diagnosed as a stage 4.
I know that from the radio I’ll lose hair where they’re targeting but I’m not sure if I’ll lose hair from the temozlomide as well.
If anyone’s been through the same or a similar treatment cycle and is happy to share their experience and what side effects they experienced I’d be very grateful!
Also, any advice on things to get in advance? Any skin care products etc?
HI MaxW
a warm welcome to the group. Sorry to hear about all that you're going through.
I supported my late husband through his Glioblastoma journey and he had 6 weeks of Temozlomide (TMZ) and radiotherapy in combination and coped really well on it with minimal side effects.
The first week the CNS prescribed him strong anti-sickness pills to take and told him to take them even if he didn't really feel sick as they would help his body adjust to the TMZ. He took them and was never actually sick although did feel a bit yucky some days towards the end. He had other anti-sickness drugs just in case but he never needed them. His biggest complaint about the radiotherapy was that the mask was too tight and the nurses squashed his nose every day. Go figure! He lost a line of hair around his scar but it grew back in quickly after the treatment ended. He was grey but the new hair grew in black initially then faded out to grew after a few months. The biggest issue was fatigue. By week 4 he was exhausted and that feeling of fatigue lasted for a month after the treatment cycle ended. He was always up and dressed every day so wasn't lying about in bed although he did dose off for the occasional nap during those few weeks.
His skin got dry and itchy towards the end and the CNS prescribed Zerobase an emollient cream to relieve the itch. He also tried aloe vera aftersun on it.
His sense of taste also changed slightly during treatment and for a few weeks after. He went off milky, creamy things and food like mac n cheese but that recovered in time.
hope that helps.
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For now though I'm sending you a huge virtual hug and lots of positive energy.
Love n hugs
Wee Me xxx
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