Justin

[Justin1970]

Hi lou 

Thanks for your message, sometimes it seems like once they finish with the cancer side of things they don't really want to know about anything else so refer you to a gp who then has to tell them there job, I was surprised they said I didn't have to have another MRI scan or ct scan for 6 months when originally it was 3 months it does seem crazy but I guess they know what is best lol, anyway rant over hope your well take care Justin 

[LA NYC]

Hi Justin,

Sorry I missed your reply earlier, I’m still learning how to navigate these boards and how to see and reply properly! 
sorry too, that you’ve been given the runaround and had to go back and forth with your doctors to get answers and resolve. How frustrating and nerve wracking that is! 
I am glad to hear that it’s not cancer related( whew!) and hope the meds you’re taking are working and that you’re feeling much better.

best to you,

Lori

[LA NYC]

Hi Justin,

me again, 😏, I think I misunderstood and realize now your diagnosis WAS cancer related, so sorry again that you had to go through the back and forth and runaround. We really do know our own bodies, what’s happening and do have to advocate for ourselves. I’m glad you were persistent and really hoping you’re feeling much better now. Have a great day and week.

be well,

Lori 

[Justin1970]

Hi Lori 

I still find it difficult to navigate the forum aswell I miss lots of posts and then find them lol, I think by the sound of it the swelling from the gamma knife radiosurgery is probably pressing on something a bit so causing a slight problem, I agree with you that we know if something isn't right lol, hope your feeling well have a great week too 

Take care Justin x 

[LA NYC]

Hi Justin,

I do hope you’re feeling better now that you are on the anti-seizure meds and steroids. Wishing you all the best💜

Lori

[Karen_L]

Justin, 

Sorry to hear about the after-effects of the gamma knife procedure. Is there an oncological/neurological  radiologist following your case? The person who did your gamma knife procedure is someone to check in with and follow up with. I had my gamma knife in March and have had one follow-up MRI in May, with another scheduled for October. After each, I review results with the radiologist. Finding the radiologist might be useful for you to do as your brain settles down with the medications. 
 

All best,

Karen

[Justin1970]

Hi all

Thank you for your messages, I've been on the dexamethasone for a month now and cut down to one tablet per day everything seems to have settled down but I'm worried and reluctant to stop them altogether incase everything starts again, I know I have to try it to find out what will happen but it is worrying, the dexamethasone has caused a rash across my back again like it did when I took them before but I would rather that than anything else,

I hope everyone is well 

Take care Justin 

[LouT]

Hang in there Justin.  You're doing so well, and I'm glad to hear that your symptoms are receding.

Lou

[LilyMir]

Hi Justin, what is the plan for you from your oncology team side? I was told one should not stay on Dexa longer than needed as it has side effects. I hope you are getting some answers about the longer term plan (if not, maybe a second opinion is in order?). I recall your GP was pro-active so hope you are having him as part of your care team still.

I am having my own fears about starting targeted therapy, supposed to start in less than 2 weeks. I hear all sorts of horror stories but also know that the drug helped so many people who had no or minor side effects. I think my chemo experience and subsequent issues like tachycardia and SOB etc freaked me out but I have no option but to push through at this point to reduce my recurrence risk as much as possible. As the doctor gave me the leaflet for the drug the other day, he smiled saying "if you read it all you would not want to take it but I give it to even 80 year olds and most of the time it goes well". Risk remains but I guess this is our life now as lung cancer survivors (sigh).

[Justin1970]

Hi lily

I hope your well and enjoying life best you can, I seem to be alright at at the moment on the lower amount of dexamethasone and have been told to take these for another fortnight and then stop them and see what happens, I am a bit worried but I will ask for a mri scan sooner than December just incase there is any more brain mets even though they have said it was brain swelling due to the gamma knife radiosurgery it's still a bit worrying, I do think the the dexamethasone is causing me breathing problems and a rash on my body but they didn't seem over concerned about it even though the Internet says it could be an allergic reaction so I'm not sure what to do lol, I think your right about this being our life now unfortunately but aslong as we all get through this I guess everything will be worth doing,

All the best Take care Justin x 

[LilyMir]

So sorry Justin that you have to worry about this still. I know what you mean about doctors "not being concerned", I always get that from my oncologist so I often seek second opinions. Good idea to push for a head scan again soon. Hope all turns out to be just perfect! Keep us posted.