Babs Posted November 27, 2021 Share Posted November 27, 2021 Hi Justin, I had terrible pain when I ate at the end of my radiation. I used Magic Mouthwash and it helped long enough for me to eat a meal. It’s a prescription that I would drink before a meal. Lidocaine and a couple other things. Not sure if they have it over there but it’s worth a shot. Good luck Babs LouT and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted November 30, 2021 Author Share Posted November 30, 2021 Hi does anyone know if oramorph works on esophagitis as the pain when swallowing is almost unbearable, the Dr's want me to go in to hospital but I would rather not just yet if possible many thanks Justin Quote Link to comment Share on other sites More sharing options...
Karen_L Posted December 1, 2021 Share Posted December 1, 2021 Hi Justin, I'm so sorry you are in such pain. I completely understand not wanting to go to the hospital, but I just wanted to share that when my doctors wanted me to go to the Emergency Room at the hospital, I didn't go and I now realize it was a pretty dumb move on my part (and that's an understatement.) Whether you go or not, I hope you find a way to get some relief. Karen LouT and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
Judy M2 Posted December 4, 2021 Share Posted December 4, 2021 I can recommend methadone. A palliative care specialist or pain management doctor can prescribe it. I know how you feel, so sorry for you. LouT 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted December 9, 2021 Author Share Posted December 9, 2021 Thank you for the replies, I finished my treatment last Wednesday, the radiotherapy has caused terrible burning to my throat and esophagus but apart from that I actually feel quite good, the oncologist said that there was no point doing any more chemotherapy because it works better with radiotherapy and seeing I was finishing last Wednesday they said no more chemotherapy, apparently the tumor has already started to shrink and the lymph nodes are alright aswell so hopefully we'll get some more good news next year kind regards Justin x catlady91, Judy M2 and Tom Galli 3 Quote Link to comment Share on other sites More sharing options...
catlady91 Posted December 11, 2021 Share Posted December 11, 2021 My mum also had burning after radiotherapy and she only had two rounds of chemo. She was meant to have an extra one but they decided it wasn't necessary. Well done for finishing your treatment and sticking with it. Apparently not everyone does and when my mum was undergoing treatment one of the nurses told her that not all patients stick with it and give up treatment. I read that you're not eligible for immunotherapy. Do you know if they want you to try any targeted therapy instead? Monica x LouT 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted December 12, 2021 Author Share Posted December 12, 2021 Hi Monica I'm glad the treatment is over but I'm also glad I stuck with it, the oncologist said they were really happy with the way the treatment has done its job, they haven't mentioned anything about targeted therapy yet do you think I should ask. Justin xx catlady91 and LouT 2 Quote Link to comment Share on other sites More sharing options...
LouT Posted December 12, 2021 Share Posted December 12, 2021 Justin, I think asking is always a good choice for anything we'd like more information on. Lou catlady91 1 Quote Link to comment Share on other sites More sharing options...
Judy M2 Posted December 13, 2021 Share Posted December 13, 2021 Justin, I can't recall if you did get biomarker testing. You should definitely ask your oncologist whether targeted therapy is applicable. If it is, you'll want to start it as soon as possible. LouT and BridgetO 2 Quote Link to comment Share on other sites More sharing options...
catlady91 Posted December 18, 2021 Share Posted December 18, 2021 I think it's worth asking and exploring what further options there are. It's good that the oncologist is happy with the treatment though. I think it's always good see what else is available so you have more options and are more informed about your illness as you can xx LouT 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted December 23, 2021 Author Share Posted December 23, 2021 Hi been to see the oncologist today unfortunately been told i have the k RAS mutation which I don't think is great news but I dont know much about it so I'm a bit confused has anyone on here had this Many thanks Justin Quote Link to comment Share on other sites More sharing options...
Judy M2 Posted December 23, 2021 Share Posted December 23, 2021 Here is some info on KRAS lung cancer. A targeted therapy has recently been approved for the mutation KRAS G12C. https://www.lung.org/lung-health-diseases/lung-disease-lookup/lung-cancer/symptoms-diagnosis/biomarker-testing/kras You'll also want to check out the KRAS forum under the NSCLC Group/Lung Cancer Mutations. https://forums.lungevity.org/forum/60-kras/ BridgetO and LouT 2 Quote Link to comment Share on other sites More sharing options...
RJN Posted December 24, 2021 Share Posted December 24, 2021 Hi Justin, It depends on your specific KRAS mutation. I am G12C, and will be eligible for a new drug which was only approved by the NHS as second line in September. It is called sotorasib or lumakras. Ask your doctors about this. Glad your radiation went well - but good to have options lined up just in case. Rikke LouT 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted December 24, 2021 Author Share Posted December 24, 2021 Hi rikke I'm sure that's the same as I have, I was worried that there was no treatment for it but the oncologist told me I could have a treatment if it was needed Many thanks Justin LouT and catlady91 2 Quote Link to comment Share on other sites More sharing options...
catlady91 Posted January 1, 2022 Share Posted January 1, 2022 Hi Justin, I hope you're doing well and had a good Christmas. Having a mutation isn't really good or bad news; it just helps the oncologists to decide what treatment plans are and aren't suitable. Luckily there are lots of new targeted treatments for mutations. It's good that the oncologist doesn't think that you need the treatment at this moment, but it seems like the treatment is an option if the cancer was to return (hopefully it won't but it's good to know that there are options). I wish you a happy and cancer free 2022! LouT 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted January 5, 2022 Author Share Posted January 5, 2022 Hi thank you, I'm waiting for a scan date to see how the treatment did , I'm a bit confused about all the kras mutation and the pdl1 negative stuff I don't really understand any of it to be honest lol, does anyone have any idea how to explain it in simple terms lol. Many thanks Justin LouT 1 Quote Link to comment Share on other sites More sharing options...
EMandM Posted January 5, 2022 Share Posted January 5, 2022 Hi Justin, So I think PD-L1 is a protein that can be found on some cancer cells. The presence of PD-L1 basically tricks your immune system into thinking the cell is harmless, so your immune system ignores it rather than attacking it. If you have a high level of PD-L1, immunotherapy can be used… which I think essentially works by allowing your immune system to see through the PD-L1, and recognize the cells as harmful… so your body will start to fight the cancer cells. I think. If you are PD-L1 negative (like me), it means you have low (or no) levels of the protein on your cells… so immunotherapy may be less helpful. But there are studies that show immunotherapy can still help despite this (like this one: https://www.frontiersin.org/articles/10.3389/fonc.2021.657545/full). So they may still use immunotherapy in your treatment. I’m afraid I don’t really understand the genetic mutations either, so would also be keen to hear more about what they all mean! I hope that makes sense! Gini RJN and LouT 2 Quote Link to comment Share on other sites More sharing options...
RJN Posted January 5, 2022 Share Posted January 5, 2022 In the simplest of terms, certain treatment have been know to attack cancers with specific mutations. Similarly, immunotherapy like Keytruda attacks cancers with high levels of PDL1 which is an inhibitor which normally protects cancer cells from the immune system. Hence, if you don’t have particular mutation markers, or high PDL1, it is less likely that the treatment will work as it has little to identify the point of attack. Immunoscience is unbelievably complex, so I only get a small part of it, but this seems to be the gist of it. So we hang out and wait till scientists find the a drug which matches your particular mutation,… 🤷♀️ Clever people: please correct anything I got wrong! Rikke LouT 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted January 6, 2022 Author Share Posted January 6, 2022 Thank you both for the replies, it definitely explains things better, I hope the scan comes through fairly quickly it really is a nightmare waiting. Many thanks Justin x LouT 1 Quote Link to comment Share on other sites More sharing options...
Judy M2 Posted January 7, 2022 Share Posted January 7, 2022 This podcast about immunotherapy may be helpful too: https://www.cancer.net/blog/2021-11/what-people-with-cancer-should-know-about-immune-checkpoint-inhibitor-side-effects LouT 1 Quote Link to comment Share on other sites More sharing options...
RJN Posted January 13, 2022 Share Posted January 13, 2022 Hi Justin, Hope you are doing well. I just started radiation to my lymph nodes and lung, and been told to expect some issues with the oesophagus as well. May I ask how many sessions you had before your pain started? I am trying to prepare myself. best, Rikke LouT 1 Quote Link to comment Share on other sites More sharing options...
Judy M2 Posted January 13, 2022 Share Posted January 13, 2022 Rikke, I know your question wasn't directed to me me but my esophagitis started about 2 weeks into a 30x radiation schedule. So did the fatigue. LouT 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted January 14, 2022 Author Share Posted January 14, 2022 Hi rikke I had 20x days of radiotherapy to my right upper lobe and lymph nodes, I had a few symptoms like losing hair on my chest, also my chest and back felt really hot all the time i didnt notice much until the end of treatment pain wise but a week after i had finished it did get worse to swallow and peaked about 10 days after that which I found really bad, it was difficult to eat any solid food but it does get better quite quickly once it's peaked, I actually feel quite good now in my self, Im worried about the first scan next Tuesday just hope it was all successful. goodluck with everything I really hope it goes well for you take care Justin x LouT 1 Quote Link to comment Share on other sites More sharing options...
RJN Posted January 14, 2022 Share Posted January 14, 2022 Thank you both! I know it sounds silly, but my best friend’s 50th is coming up in two weeks, with people coming in from all over the world. After the past two years of lockdowns and cancer treatments I really, really want to be in decent form. I know there is nothing I can do in particular, but from what you are saying, I could be fortunate and make it ❤️❤️❤️🤞🤞🤞 Quote Link to comment Share on other sites More sharing options...
RJN Posted January 14, 2022 Share Posted January 14, 2022 And crossing my fingers for you, Justin. Let us know how it goes! Quote Link to comment Share on other sites More sharing options...
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