Justin1970 Posted August 9, 2022 Share Posted August 9, 2022 Hi all I just wondered if anyone else who has had gamma knife radiosurgery treatment for brain mets had any side effects I had the treatment done in March and my mri scan with contrast in june showed the mets were shrinking well but some swelling was present due to the gamma knife,the night of the mri scan I had a sort of arm shaking spasm from my shoulder when I mentioned it to the oncologist he said it could be a reaction to the mri contrast and could take a while to settle down,its still doing it now and again and I'm worried it might be a seizure trying to happen if anyone has had any experience with this I would really appreciate it Many thanks Justin LouT, Izzy and Tom Galli 1 2 Quote Link to comment Share on other sites More sharing options...
Pstar Posted August 10, 2022 Share Posted August 10, 2022 Hoping and praying that it goes away for you Justin and isn’t a seizure LouT, Justin1970 and Izzy 3 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted August 10, 2022 Author Share Posted August 10, 2022 Hi pam Thank you for your message I have rang the cancer nurse today who said she will tell the oncologist what is going on and hopefully get back to me tomorrow, she said it sounds like a nerve problem possibly caused by the gamma knife not a seizure as the mri scan showed excellent results, so hopefully they will sort it out for me quickly, I hope your well take care Justin x LouT, Tom Galli and Izzy 3 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted August 11, 2022 Share Posted August 11, 2022 So sorry to hear the spasms are happening again Justin. I hope your oncologist gives you better answers than vague could be this, could be that. If they do, can you get a second opinion? Worth asking a lot of questions until you are satisfied with the answers. Keep us posted and take care! LouT, Izzy and Justin1970 3 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted August 11, 2022 Author Share Posted August 11, 2022 Hi lily Thank you for your message, the oncologist got the nurse to ring me today said it was nothing to worry about probably just a trapped nerve and to contact my gp and arrange for physio therapy as it isn't anything cancer related, so I went to the Dr today and he said it is absolutely not a trapped nerve and more like seizure activity so immediately upped my antiseizure tablets and rang my oncologist who now agrees with my Dr that it's probably due to swelling from the gamma knife and have put me back on dexamethasone steroids, I can't actually believe that this is all happening, hope your well and not to bad after the chemotherapy all the best Take care Justin x Izzy 1 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted August 11, 2022 Share Posted August 11, 2022 I am furious reading this Justin. The minimization of some doctors is beyond the pale. I am almost having PTSD from 3 of my doctors missing my huge tumour imaged 4 years ago, then 3 GPs telling me my fatigue is "anxiety" over 2 years, then now my oncologists chalking my life threatening chemo side effects on "anxiety". If I learned anything from my diagnosis fiasco is that one should take every doctors's opinion with a huge grain of salt, ask questions, educate oneself, and ask so many questions. Never shy to seek second and third opinion for unresolved issues. In every chemo session I had nurses almost made a mistakes so now I double check every chemo bag they bring and every test in my records. Seems medical staff, at least here in Canada, are so overworked and they learned shortcuts that sometimes cost us our lives. Stay vigilant but do not lose hope. One great fact seems to be that you have an absolutely awesome GP so check in with him often. My oncologists refused to take my heart problems with any seriousness so now I deal with any checkups I want through my GP who ordered me ECG, echo and Holter. We are all lung cancer warriors here so please do not get discouraged Justin. You got this and we are cheering for you 🤛 P.S. My Day 1 of cycle 4 was yesterday and it seems OK so far. Not much of an appetite, a bit of tight chest and quite a bit of fatigue but steroids kept me active I even cleaned our home and cooked a lovely meal and cake for my family so counting my blessings even with the shadow of my disease overhanging. Keep us posted and take care! Izzy, Tom Galli, Scruboak and 1 other 3 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted August 12, 2022 Author Share Posted August 12, 2022 Hi lily Thank you for your support I hope you continue to feel well after your chemo and I'm really glad you could have some enjoyable family time, I still struggle with fatigue but kind of getting used to it now as part of everyday life, I think I will talk to my gp more as he seems to be a bit more approachable if the oncologist had listened last Month I probably could have avoided any of this I'm just so glad it didn't turn into a proper seizure and hopefully the medication will sort this all out, I'm sure we will all get through this lily stay strong and positive take care Justin x LouT, Izzy, Tom Galli and 1 other 4 Quote Link to comment Share on other sites More sharing options...
BridgetO Posted August 14, 2022 Share Posted August 14, 2022 Hi Justin, I wonder if a consult with a neurologist would be helpful? LouT, Justin1970 and Tom Galli 3 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted August 15, 2022 Author Share Posted August 15, 2022 Hi Bridget Thanks for your message, i haven't been offered anything like that by the cancer department I could ask do you think it be any help, hope your well take care Justin x Izzy and LouT 2 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted August 15, 2022 Share Posted August 15, 2022 Can you ask your GP Justin?I could not get any support through my oncology nor surgery team either when I had cardiac issues so pushed through my GP who ordered many tests. My GP even went on long vacation after that so I contacted a cardiologist I know myself and asked a locum doctor for official referral since I saw my tests had some flags when I read carefully! The sad fact is that doctors don’t care much beyond their immediate responsibility. Even then, mistakes/missed issues happen a lot. Patients need to push for proper care often. Sad but seems how it is, at least where I live. LouT and Justin1970 2 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted August 15, 2022 Author Share Posted August 15, 2022 Hi lily Thanks for your message, I might mention it to the Dr, I have been alright since the tablets have been upped I'm just hoping it sorts it out in the long term,it does seem like we have to push to get things done doesn't it, I hope your well still after the chemotherapy, Take care Justin x Izzy, LouT and LilyMir 3 Quote Link to comment Share on other sites More sharing options...
BridgetO Posted August 15, 2022 Share Posted August 15, 2022 Justin, if it's possibly seizure activity, this is in the expertise of a neurologist. Justin1970 and LouT 2 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted August 16, 2022 Author Share Posted August 16, 2022 Thanks Bridget I will definitely mention it if it continues but they told me the mri scan results were really good and would almost certainly be swelling from the gamma knife, I am going to push for an earlier scan than 6 months though incase something else appears Take care Justin x Izzy and LouT 2 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted August 16, 2022 Author Share Posted August 16, 2022 Hi everyone So today is a year since diagnosis of lung cancer it has been a rough journey but didn't believe I would even get to this point, even though I still have cancer for me to get to a year is like a mile stone to me,I just want to thank all my family and friends for all their love and support throughout this nightmare, and I would also like to thank all of you on this forum for being here with me and giving me hope your all very special people I hope we can all get through this together Take care everyone Justin x Tom Galli, LouT, LilyMir and 1 other 4 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted August 16, 2022 Share Posted August 16, 2022 So happy you are here and doing so well Justin. Here is to many many years to come with Cancer kept at bay . It has been 5 months since my diagnosis and I feel I aged an extra 20 years since then but also somehow I have so much more clarity about what really matters in life. Take care! LouT, Izzy and Justin1970 2 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted August 16, 2022 Author Share Posted August 16, 2022 Thanks lily I hope we all get a bit of luck with this I really do, i think I've aged a fair bit since diagnosis aswell lol, but your right it does make you realise the important things in life, I hope the chemotherapy isn't hitting you to hard Take care Justin x Izzy and LouT 2 Quote Link to comment Share on other sites More sharing options...
Judy M2 Posted August 16, 2022 Share Posted August 16, 2022 Justin, it's hard to believe it's already one year for you. I can tell you that my first year was likewise difficult, and I hope things get better for you. They did for me. Izzy, LouT and Justin1970 2 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted August 16, 2022 Author Share Posted August 16, 2022 Hi judy Thanks for your message, it seems crazy it's only been a year it feels like a lifetime, glad your well Take care Justin x LouT and Izzy 2 Quote Link to comment Share on other sites More sharing options...
BridgetO Posted August 18, 2022 Share Posted August 18, 2022 Justin, you're really an old-timer on here now! LouT 1 Quote Link to comment Share on other sites More sharing options...
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