EMandM Posted February 1, 2022 Share Posted February 1, 2022 5 hours ago, RJN said: Thanks for checking in, Justin! Yes, I am still doing well, and the party was just what was needed - very glam and great to see friends from far afield. Now I am ready for whatever the rest of the treatment course has in store for me (14 down 21 to go). Any news from your side ? So glad you got to go!! That’s so great!! I started my radio on Monday… 2 down; 30 to go! I was planning to more-or-less hide away while I did it, but you’ve inspired me to make some plans with friends to look forward to along the way. Xx LouT and RJN 2 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted February 2, 2022 Author Share Posted February 2, 2022 Hi Emandm I had 5 weeks of radiotherapy and it really didn't seem to hamper me in anyway until I had nearly finished the treatment, I carried on working and doing things with my family while going to radiotherapy so I hope you will be able to do the same, fingers crossed for you take care Justin x LouT and Judy M2 2 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted February 9, 2022 Author Share Posted February 9, 2022 Hi rikke just wondering how you were getting on with your treatment hope it's going well without to many difficulties xx RJN and LouT 2 Quote Link to comment Share on other sites More sharing options...
RJN Posted February 9, 2022 Share Posted February 9, 2022 Thanks for checking in Justin. I have just finished round 20, so 12 conventional and 3 stereotactic to go - so 3-4 weeks. I am grateful that I have no real side effects so far (apart from my chest and back being weirdly pimply - feel like a teenager!). But finding the daily slog quite tough. Interestingly my doctor said yesterday that he is not sure about the stereotactic to my adrenal gland. It seems my response to the four rounds of immunotherapy is so strong it might not give him anything to zap when we get to that in a couple of weeks. Quite interesting - he seems to be not a big believer in immunotherapy, so he said “we’ll get it later”. I did ask him about results from radiotherapy and he said we should be able to have a quite definitive picture/prognosis three months after completion. How are you? Any news? LouT 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted February 10, 2022 Author Share Posted February 10, 2022 That's brilliant news im glad it's all going well for you and the immunotherapy has worked well hopefully you won't get to many side effects, i did have lots of tiny blisters across the top of my back but it did go away after a while lol I also lost a lot of hair from my chest lol, I'm OK thanks still have some chest pains but have been told it is to be expected. Take care Justin x Quote Link to comment Share on other sites More sharing options...
RJN Posted February 10, 2022 Share Posted February 10, 2022 Good to hear. In case it isn’t clear from my name, I am female, so thankfully no chest hair to worry about 😜 LouT 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted February 10, 2022 Author Share Posted February 10, 2022 Lol yeah I did know you were female I thought about that after I wrote it lol x Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted February 27, 2022 Author Share Posted February 27, 2022 Hi I just wondered if anyone has had any experience with lung cancer spreading to the brain after a treatment plan of chemoradiotherapy, the recent scan was good and the tumor has shrunk significantly aswell as nearly gone from the chest lymph nodes, friday night I had a seizure that they think could be a stroke or possibly secondary cancer as they saw a shadow I've just had an mri scan and waiting for results hopefully tomorrow, I will contact my cancer team tomorrow hopefully they will have some answers Kind regards Justin RJN and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
RJN Posted February 28, 2022 Share Posted February 28, 2022 Oh Justin, that sounds frightening. I hope you get some answers quickly and that it is nothing too bad. All the best, Rikke Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted February 28, 2022 Author Share Posted February 28, 2022 I've been told it's a brain metastatic cancer from my lung, I have to see the neurological team today I would like to know how it happened as I had a brain scan in September which showed all clear then started the chemotherapy and radiotherapy but somehow it has spread to my brain Quote Link to comment Share on other sites More sharing options...
RJN Posted February 28, 2022 Share Posted February 28, 2022 Darn it, so sorry to hear. My understanding is that chemo can’t cross the blood-brain barrier, which is why brain metastases are mostly treated with radiation. But I guess there was nothing to catch at the time you were doing radiotherapy - blinking sneaky disease! Let us know how you get on - sending you every positive vibe I can muster! Quote Link to comment Share on other sites More sharing options...
catlady91 Posted February 28, 2022 Share Posted February 28, 2022 I'm so sorry to hear this Justin. Hopefully the mets are small and can be dealt with with radiation. I don't have any experience of brain mets but I've heard that they can be successfully treated with radiation. What else did the doctor say? Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted February 28, 2022 Author Share Posted February 28, 2022 Hi I'm going to see the oncologist today just hoping there is something that can be done, looking online it doesn't look to promising but not much I can do really just pray there's something they can do Quote Link to comment Share on other sites More sharing options...
LouT Posted February 28, 2022 Share Posted February 28, 2022 Justin, Please continue to keep us updated. I've heard about some great advances and success in treating brain mets and I hope you'll respond well to one of those treatments. Lou Izzy and catlady91 2 Quote Link to comment Share on other sites More sharing options...
catlady91 Posted February 28, 2022 Share Posted February 28, 2022 8 hours ago, Justin1970 said: Hi I'm going to see the oncologist today just hoping there is something that can be done, looking online it doesn't look to promising but not much I can do really just pray there's something they can do Don't rely too much on what you read online. There isn't a lot of information about the advances in treatment. It's the same with survival statistics- most of them are heavily outdated and don't take into account treatment advances. How large is the brain mets? LouT 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted February 28, 2022 Author Share Posted February 28, 2022 Thanks for the reply one is 1.3cm the other is 2mm I just hope it doesn't spread anywhere else hopefully some radiotherapy will sort it Izzy 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 2, 2022 Author Share Posted March 2, 2022 Hi all I have an appointment tomorrow morning with the oncology team after there meeting today to see if there is anything they can do, hopefully being small there will be a treatment plan for me and get some more time to spend with my family x LouT and Izzy 2 Quote Link to comment Share on other sites More sharing options...
Izzy Posted March 2, 2022 Share Posted March 2, 2022 You will sonzie xxxx you’ve too much to live for xxxxx 💔 xxxxx LouT and catlady91 2 Quote Link to comment Share on other sites More sharing options...
LouT Posted March 2, 2022 Share Posted March 2, 2022 Justin, We have all fingers and toes crossed for you and are sending up prayers and good thoughts. We look forward to hearing the treatment plan. Lou Izzy 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 2, 2022 Author Share Posted March 2, 2022 Thanks lou I hope there is a treatment plan for me it's very worrying as I know so little about brain mets, I know they were happy at the size of them but it's still really frightening to think this could be the end RJN, LouT and Izzy 3 Quote Link to comment Share on other sites More sharing options...
Judy M2 Posted March 2, 2022 Share Posted March 2, 2022 Justin, in our Tagrisso Facebook group many people have brain mets that are treated with radiation. Your radiation oncologist can tell you what type they'd suggest. I agree that lots of online information is outdated. Fingers crossed for you. Izzy 1 Quote Link to comment Share on other sites More sharing options...
LouT Posted March 2, 2022 Share Posted March 2, 2022 Justin, We shouldn't worry about "the end" until someone tells us "this is the end". There are so many folks on here that have had chemo and/or radiation treatment for brain mets and they are still here even though the mets are not. Please don't jump to conclusions before you have all the facts. Your worry does nothing to improve the outcome and only serves to worsen the present. Keep yourself busy today and every time you begin to worry, remember to yourself, "I'm still here and so are treatments", then look to do something you like to do and busy yourself with it. Anxiety is a constant companion with our disease, our job is to keep that monster in a cage so it doesn't ruin our lives while we're living them. You can do this. Lou Izzy, catlady91 and Judy M2 3 Quote Link to comment Share on other sites More sharing options...
Izzy Posted March 2, 2022 Share Posted March 2, 2022 I’m Justin’s mum LouT and your post helped me thanks very much, it’s a terrible time for us all. LouT 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 2, 2022 Author Share Posted March 2, 2022 I know everyone is right it's just really hard to get your head around it all, I know I have to get on with life but the uncertainty is terrible, I feel so sad for my family its crucifiying me to see them all so sad LouT and Izzy 2 Quote Link to comment Share on other sites More sharing options...
catlady91 Posted March 2, 2022 Share Posted March 2, 2022 Lou is right, don't give up hope. I think that all people with cancer have thoughts of and fear of death. It's a shock but it doesn't mean death. There are so many new treatments available and there are many people who are living for years with stage 4 cancer. I follow this woman on Instagram who was diagnosed with stage 4 bowel cancer and had around 17 tumours around her body at the time of diagnosis and over 5 years later she's still alive. She almost died but she defied all odds. You mentioned that the doctor was happy with the size of them so they must think it's very treatable. I've heard that brain mets can easily be radiated. Lung cancer does commonly spread to the brain. Did you have a head CT whilst you were being diagnosed for cancer? They gave my mum a head CT on top of a PET and chest CT. LouT 1 Quote Link to comment Share on other sites More sharing options...
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