Yesterday I completed my 25 daily blasts of fractionated stereotactic radiotherapy. Woohoo! No more daily commutes to Chelsea Marsden. Can't say I've had any side effects so far, although my tinnitus seems slightly louder this morning while listening to the radio. And I'm very tired, but I think that's the commute as much as the treatment.
Now it's another case of waiting. I have a phone appointment with the nurse in a month, presumeably to find out whether or not my ear has fallen off, then a repeat MRI in approx 3 months to see what my lodger is up to.
Have a good weekend, everyone. I certainly will, knowing I can have a lie in on Monday morning
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Alison_L
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just out of interest how did you make the decision to go the stereotactic route rather than Gamer knife or surgery? I am on review and was explained the various options but how to decide?
Hi, my understanding is Gamma knife can only be used when your tumour is suitable for one blast of radiation. Sometimes due to size and position this isn’t the best treatment and more sessions are needed and that is never given as gamma treatment. I also think it all depends on which your hospital use.
Hi HBS. My consultant at St George's wanted to do translab surgery to remove it, but I turned that down as a) my 94yo mum is on palliative care and I couldn't be out of action if she needed me at the end, and b) I'm bats**t scared of any surgery (I had a heart attack 5 years ago and only avoided open heart surgery through the understanding of that surgeon, and that turned out well)! The neuro consultant then referred me to Royal Marsden to see if they could offer me some kind of radiotherapy/gamma/cyberknife.
My AN grew from 1cm last Feb to 1.5cm last Sept, but most of that growth was actually a cyst on the AN (my lodger had a lodger!). By Dec the whole thing had grown another 2mm. The RMH consultant explained that the long blasts of gamma knife would more than likely cause that cyst to swell initially, potentially causing all sorts of problems, whereas the short blasts of fractionated stereotactic RT were less likely to cause the cyst to swell, and indeed any other side effects. She has warned that it may not work, and if it does, then it will probably only stop further growth (maybe temporarily), rather than shrink the tumour, so surgery may still be on the cards further down the line, but I'm willing to accept that. FSRT is apparently quite uncommon - my clinical nurse specialist at RMH has only seen 2 of us in his 2 years in the post.
Prior to treatment my symptoms were SSD and manageable tinnitus. Five days after finishing treatment, I'm getting the odd pain in my head (ie a headache that only lasts a few seconds), tiredness (but that was more likely caused by the daily 90 minute each way commute to Chelsea, and may be easing now), and raging teenage acne which no one warned me about (I'm 61). No numbness, burning, hairloss, dizziness or other possible side effects. Now just wait to see what my lodger has made of the RT.
Hi Alison, you must be on a bit of a high! I was relieved enough after 5 days treatment, let alone 5 weeks! Are you on steroids? I was and did have a bit of a crash after stopping them. Hopefully you’ll be fine but do be gentle with yourself, there is a lot going on in there. Hopefully it’s all been effective ( once the swelling subsides) in stopping further growth for both of us. I’m 8 months on and enjoying a fab holiday in Thailand but it was a bit of a tricky few months for a bit. Nothing too dramatic but like walking through treacle and migraines i had never had. Drink loads of water and eat every few hours if you’re fatigued. The hardest bit is done though… well done! X
Thanks, Lin. No mention was made of steroids - just paracetamol for headaches - although there might have been a problem with steroids and all my heart meds. I was given some sedatives to use if I was getting too anxious, but I managed without these. Good to hear you're enjoying yourself in Thailand. I won a 2 night break last year, but can't get away with my mum as she is - she was given "days, if not hours" to live in mid-December, but she rallied and the prognosis 3 weeks ago was "long weeks, short months".
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