Hello everyone!
I was looking for this kind of a forum to share my experiences and learn from others.
I was diagnosed with brain cancer in May this year, (a glioblastoma level 4) after experiencing a sudden loss of feeling in my finger and two near falls, I now have in limited mobility in that arm. I have read from others on this forum that they have had a similar experience.
Treatment wise, I had an operation within two weeks and I have also completed one round of Chemo and finished my course of Radiotherpy nearly two months ago.
last month, after a 4 week break from treatment I was given a higher dose of chemo, I finished this (the five day on 23 days off cycle) however, I was admitted to hospital shortly after where two blood clots were found-one in the leg and one in the brain. I have been given medicine for this as well as a higher dose of steirods to better manage my mobility which took a bit of a knock and any swelling caused by treatment. Thankfully I haven't been affected dramatically from this but my chemo has been put on pause and my steirods were increased
I have one question: my dr is quite keen to reduce my sterirods by one tablet next week and another the week after, so from a dose of 16mg to 14mg . Has anyone had a similar experience with having to wean off steriods and if so what has been your experience with this? did it have any negative impacts that I should be aware of?
I am quite keen to speak via phone ideally to other people in my position as I struggle to keep up to date with messages. If anyone would like to get in touch please private message me and we could go from there.
Thank you for reading my meassge and I hope to hear from some of you soon.
Hi and a very warm welcome to the online community, although I'm sorry you've had to find us.
It's good to hear that you haven't been affected too badly by the side effects of your treatment regime. I'm not a member of this group but noticed that you hadn't had any replies yet.
You might also like to join and post in the glioblastoma multiforme brain tumour group as I believe that is the type of brain tumour that you have. My apologies if this isn't the case. If you'd like to join that group just click on the link I've created and then choose 'click to join' on the pages that opens. You can then introduce yourself and post questions after selecting '+New' or '+' (depending on the device you're using) and join in with existing conversations by clicking on 'reply'.
When you have a minute, it would be really useful if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
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"Never regret a day in your life, good days give you happiness, bad days give you experience"
