RJN

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?

Hi Oceanna, I am still doing first-line treatment (keytruda plus radiation) for NSCLC adenocarcinoma stage 4. I have also been looking everywhere for info on sotorasib, as this would likely be my second line (fingers crossed I won’t need it). So apologies for latching on to your post - do post any good forums you find. Good luck w your treatment, Rikke

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 ?

I am ok, thank you, Justin. Coming up to my 12th session today and no side effects so far. The daily visits are draining though - each take around 1.5 hours due to delays, and with transport it is around 3 hours each day plus other appointments. I really shouldn’t complain as I am only 30 mins from the hospital. But I guess it is the daily reminder of illness that gets to you - sitting next to small sick children and severely ill people is just heartbreaking. And another 5 weeks to go. But hey, gotta be done! Really hoping for more good news for you ❤️

Hello djoowiks, I have come to the conclusion that acupuncture is worth a try for most persistent pain. Having had a raft of pain issues over the past year, trying lots of different treatment and feeling ill due go the many, many painkillers I had to take, I started acupuncture a few months back. It hasn’t worked for all my niggles, but I have been off pain medication for many months now. It is a bit costly, but I feel better than I have for a long time, and there are no side effects, so think it is worth a shot. cheers, Rikke

Justin, I found this explanation very enlightening: https://www.oncolink.org/frequently-asked-questions/cancer-treatments/how-long-after-radiation-can-tumor-keep-shrinking

Hi Justin, my trial team won’t scan me until 3 months after I finish radiation as this is when they say the max effect will be visible, so you may well get more good news. I don’t know about chemo. Immunotherapy keeps working after you finish. EMandM - I am 7 rounds in with radiation - 25 conventional and 3 stereotactic to go. Still holding out for being in good form for the upcoming weekend 🤞🤞. Cheers, Rikke

Wow - that is such fabulous news! Hope you have an opportunity to celebrate with your loved ones this weekend. Every bit of progress means so much!

And crossing my fingers for you, Justin. Let us know how it goes!

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 ❤️❤️❤️🤞🤞🤞

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

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

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

Glad to hear the transfusion helped. Sorry to hear you are not a candidate for immunotherapy. Did you get any info on other bio markers, such as KRAS or EGFR mutations? If you have these, you could be a candidate for targeted therapies. I was told I can have a new targeted therapy called Sotorasib as a third line after immunotherapy and chemo because I have the KRASG12C mutation.

How very odd that a nurse would call you with this news, and they decide on treatment even before getting results from your biopsy. Just sharing for reference: At that stage (after PET), I was just told that in addition to the tumour, the lymph nodes and adrenal gland appeared to be involved, but that they would have to wait on biopsy results to recommend treatment. In the end, it turned out that I have no actionable bio markers for first line treatment (I do have a KRAS mutation with options for later treatment), but that my PDL numbers are very high, so my treatment will be immunotherapy only, keeping chemo as a fall-back option for later. Of course, none of us here are oncologists, and I am sure there is an explanation, but I would ask to see an oncologist ASAP and get a thorough explanation as to why they have decided on this course of action already. Also, make sure you get detailed info on the types of chemo you will get as from my understanding they each come with different side effects etc that you may want to be aware of and prepare for.

Good to know the testing round is over. The wait is a bit tough as they will want to map your bio markers. Just a word of advice - I ended up waiting around 6 weeks for my treatment plan because there was some mix-up and oncology got my results in drips. So I would advise you to follow up in 2 weeks or so, and then continue to nudge every few days. The NHS is great, but their systems are not always talking to each other. I was too “polite”, and it has meant that I now am redoing most of the scans prior to treatment so they have an up-to-date baseline. Really annoying. But please let us know how you get on!

Yes, I completely sympathise on the waiting pain. I wish you all the best for your PET and bronchoscopy (both were fairly uneventful for me). As I am a bit further on and have come to terms with my diagnosis, the anxiety is now around what kind of treatment they will recommend. Where are you being treated? I am at UCLH which is supposedly one of the best places, but would be interesting to compare notes as we go on our treatment plans, as most others on here are US based so reckon there could be some differences to UK-based practices.

Hi Justin, Just posted my own introduction, and also in the UK and of a similar age so thought I would reach out. The waiting is awful - I first went to my GP in June, and although I have done the bronchoscopy and have a diagnosis, I am still waiting for my treatment plan. Like you, I got an interim diagnosis of lung cancer based on the initial CT, so I think that is how they do it here. They did mention a small chance that it was bacterial, but they were careful not to give me too much hope. In a way, I am glad as it gave me time to process before I got the final “judgement”. And yes, you are likely to have phantom pains - I am sure I can feel my small tumour (only 2.6cm)… But I reckon it is unlikely. anyways, here is to us and the NHS! Rikke