I was diagnosed in June with glioblastoma. I had surgery and my 6 weeks of radiochemo and have so far had two monthly cycles of oral temozolomide. I felt really sick and had pressure headaches with the temozolomide so had to go back on steroid. I’ve had lots of steroid side effects due to being on such high doses at the start at diagnosis and after surgery- gained loads of weight and sweating, brain fog,. I feel better off them but the chemo was awful without them. I’ve had very little guidance about how fast I can reduce them and I’m about to start my next chemo round in less than 2 weeks. Has anyone managed to find a balance? I’m usually really fit and active but chemo (or maybe the steroids or coming off them) has made me ridiculously tired. I’m still trying to be active but even just two people talking at once can make me exhausted. My oncologist hasn’t really answered my questions as to what is ‘normal’ re side effects...
HI Gymdoc
a warm welcome to the online community. So sorry to hear about all that you are going through.
I supported my late husband through the 3 years of his glioblastoma journey and its fair to say he had a love/hate relationship with steroids throughout. He had surgery and the initial 6 weeks of radiotherapy/oral chemo and then declined all further offers of treatment so I cannot comment on the effects of the TMZ regime. During the 6 weeks he was on 4mg of Dexamethasone daily but I discovered around week 5 he had been binning them and not taking them as he "didn't like them"! I was furious with him when he told me. When I told the CNS what he'd done she too was furious and lectured him on the dangers of coming off the steroids too fast. Please speak to your medical ream before reducing the dose as if you do it too quickly it can cause organ harm, I believe.
Further through G's journey he was put back onto Dex to control focal seizures and the dosage then went up fairly high before gradually weaning him back down from 16mg to 2mg. Again the reductions were done with strict medical guidance from the community hospice doctor and ANP. He tried a day or two with none at one point but that was a disaster so he levelled out at 2mg.
He did experience steroid induced diabetes due to being on a high dose for a period of time.
The steroids increased his appetite dramatically but he was a fitness freak and walked/ran most of that off. They did alter his mood and he became very nasty on them, particularly when the dose was high.
I don't mean to scare you by saying this. I'm just being open and honest. As I said, it was a love/hate relationship that we needed to find a balance with.
Fatigue was the key side effect G suffered from after the 6 weeks of treatment and we were warned when we discussed whether he was going to try the TMZ treatment or not that fatigue and nausea were the key side effects from that too.
It's all about finding a balance that works for you and the best people to guide you are your medical team as they know your unique situation.
This is a safe and supportive community so please reach out here anytime. There's always someone about to listen who gets it as you've already seen, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.
It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.
For now though I'm sending you a huge virtual hug and lots of positive energy.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
