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Hello, I strongly concur with the suggestion to ask for a CT. There is a good chance it is nothing, and I don’t want to scare you, but I had very similar symptoms that were dismissed for ages, or mistaken for all sorts of other things. I know it can be difficult to get the NHS kicked into action, but it is worth the fight, if only for your own peace of mind. Good luck with it, RIKKE

Hello Salem, I don’t think there is any hard evidence that specific mutations change the rate of recurrence, although there is some suggestion (still unproven) that certain mutations hinder or help the efficacy of Keytruda and other immunotherapies. Mutations are mostly important to determine type of treatment available, as there are targeted treatment available for a few mutations. Re PDL - yes that is positive. However, PDL1 is measured as a percentage, and there is some evidence that a high level is associated with better outcomes for immunotherapy, so you may want to ask about the PDL1 percentage. Here in the UK, if the level is below 50% they will combine immunotherapy with chemo, but those over 50% get immunotherapy alone. Hope this helps, Rikke

Hi Cheryl, Tough decisions ahead. I basically concur with Tom and Lily above. I’d also encourage you to look more into immunotherapy as an option. IF your doctors think you are a candidate, it may be the best road ahead. Many have fairly minor side effects, and in some cases it keeps recurrence away for years and decades. My disease is non-squamous, so I won’t venture into further advice, but I can personally vouch for immunotherapy as a fairly gently but highly effective option.

Gosh, that is rough, and I am sorry you are having to go through this. Further up in the thread you mention that immunotherapy sounds harsh. I just want to assure you that it needn’t be. I have had 10 rounds of Keytruda so far, and the side effects are quite manageable (in my case the main ones are inflammation in some of my joints, but it has been sorted with steroid shots) - and my lesions are melting away. I hear the same from other patients when I go to my three-weekly infusions, and from many people in the various immunotherapy FB forums. Yes, some have a tougher time, but there are also many with very few side effects, and quite a few with previous extensive spread who are now stable or NED. So if you are a candidate, it really is worth a shot. Whatever you decide I wish you all the best, Rikke

I was 49, when I had a similar diagnosis last August. Of course it is hugely anxiety-inducing, and it can all seem quite hopeless. But lung cancer is no longer an automotic death sentence - and there are many treatment routes. I haven’t had chemo myself, as I am on immunotherapy- but talking to fellow patients on chemo, it is rarely as harsh as what we all imagine (I suppose from movies, and people who had treatment decades ago). I had a very lengthy round of radiotherapy and while it was tiring, there was no pain and very little discomfort involved. So do try to help your mum understand that there is a lot of options and the horror scenarios are not too common anymore.

Hurray Justin! That is such good news. Enjoy the fabulous weather knowing that things are moving in the right direction and all you gotta do is sit back and have a well-deserved pint ❤️

Hi Kelvin, As your mum’s doctor says, it is unlikely, but it happens. I had a brain MRI as well (and I am stage 4) and nothing was found. IF there is something there, they can likely blast that too (our friend Justin has just been through this). But the best we can all do is take a deep breath and take one step at a time. Living with this diagnosis since August last year, I have learnt that worrying about what might come is no way to live. Encourage your mum to live her life and fight when she has to. Hoping for the best for you, Rikke

Dear Sajid, I am sorry to hear about your wife. I can’t add much to the above, but wanted to welcome you to this forum as someone with a similar diagnosis based in the UK. It can be a lot of help to navigate this difficult time. I am an otherwise healthy 49-year old, and stage 4 NSCLC adenocarcinoma and was diagnosed last year, so can understand your shock. The next few weeks will likely be difficult, as you wait for a treatment plan, but hang in there. There are great treatments available and a good chance that your wife’s symptoms could improve. My cough wasn’t too bad, but it disappeared a few weeks into treatment. Let us know how it goes, Rikke

Thanks for responding Justin. No, I don’t have any symptoms, but it is obviously playing on my mind that this can happen. I will ask my oncologists about it as well. I am fine otherwise - back on immunotherapy and still having no real side effects, so that is good. Hope you have been able to get back to normal and enjoy this beautiful weather we are having. Going on a little Easter trip to Hastings myself 😊😊

Hi Justin, Random question, but I can’t recall if you ever had an MRI before, i.e prior to the discovery of your mets? Obviously your story is a bit worrying. I had a clear one in September, but wondered if I should ask for another one. Thanks, Rikke

I am very sorry to hear about your sister’s situation. I can understand if she has been through harsh treatment before that she would be wary of going through it again. One important thing to note is that in the past 5-10 years, there are a lot of new treatment types which are for most people much less harsh than the traditional ones. I am on immunotherapy, and other than some joint niggles I have had no real side effects. Some people get other side effects, but generally it is an easier ride and is only a short infusion every three weeks. The same goes for targeted treatments which are mainly in daily tablet form. Just my penny’s worth - hope for the best, Rikke

I cannot seem to find a way to delete a post, only to edit, report or share. See attached screenshot. Not a big deal, but can be useful/necessary on occasion. (Didn’t want to highjack the other thread where I originally asked the question).

Error (how do I delete my post?)

Hi Tammy, Hang in there. Similar diagnosis, and been on immunotherapy and radiotherapy since October. I have two lymph node lesions and both have shrunk to about a third of what they were, and I am increasingly optimistic that this stuff might actually go away. There are so my new treatments coming out for NSCLC - every few months there is a breakthrough. So hang in there - the road may be long, but nothing with this disease is certain. Rikke

Hi Justin, I am so glad you are feeling better mentally - although I don’t blame you for taking a bit of a dive after the shock of your latest news. Stereotactic ablative radiotherapy (also known as cyber/gamma knife) can take anything from 3 to 12 months to show results. I have been told that the 12 month point is likely the most reliable. It just takes cancer cells that long to die. But at 3 months you should get some sense of whether it has worked. My impression from my quite extensive reading is that brain treatment has a very high success rate, and your largest lesion is the size of a pea, so your chances are very, very good of zapping them to oblivion. Good luck with Thursday - it’ll be over soon. Rikke

Justin, Just as an aside, but it seems to be quite important in this case. Most antidepressants take 5-7 weeks to kick in. Both my parents have suffered from clinical depression and getting out from under it is a struggle - and that is without a cancer diagnosis. I know it sounds naff, but keep your head above water. We are here with you all the way and will be with you in spirit tomorrow. X

Hi Nur, I don’t really have much advice to add to Tom and Lou, but just wanted to send my sympathies. I can’t say I know how I would feel in your shoes, but I believe I would prefer for my mum to be comfortable and have a good sleep. Knowing how my mum is, she does show signs of dementia when sleep-deprived, so it might help a bit. Can you ask your doctors for stronger painkillers and/or sleeping pills. What she is getting seems very lightweight for someone in her condition. I myself get diphenhydramine and a light painkiller (same strength as analgin) for my joints. Seems at a minimum codeine or even a stronger opioid may be called for in this case. Of course, entirely up to you, but if your mum is in pain and not sleeping, this could make all the difference to her quality of life and mental well-being. All the best wishes, Rikke

Please - that is what forums like these are for. Don’t feel bad for sharing and reaching out. But yeah, I think having a clear plan forward should help you cope better mentally as well. Big e-hug, Rikke

Hi Justin, I am seeing my clinical oncologist (I.e. the one responsible for radiotherapy) next Wednesday. He is fairly blunt, but also a really top specialist. I will ask him about this and also about how to potentially see a different doctor. I have at no point been given a time-line from any of the four oncologists I have been across. All have been clear that for people like us - young(ish) people in general good health, statistics are really not useful. On the anecdotal front, I was just thinking of my beloved aunt who was diagnosed with an enormous inoperable brain tumour at 70 almost 10 years ago and was given 3 months. She is still alive and kicking with no treatment, so life is strange! R

Dear Justin, I am really sorry - that sounds like a lot to take in. I hope you get treatment really quickly. I also hope you can allow yourself to believe in the best-case outcome. There are so many factors and all the latest technologies have very little data behind them, so who knows? I am keeping my fingers crossed for a positive outcome.

Sending you lots of positive vibes, Justin. I know the thought of family is often the worst, so I feel for you, and totally understand your feat.. But brain radiation is quite effective from what I gather. Dozens of people in my immunotherapy group have been through it and are here to tell the tale several years out. Rikke

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!

Oh Justin, that sounds frightening. I hope you get some answers quickly and that it is nothing too bad. All the best, Rikke

Thanks Tomm, good to know. I have just finished 32 rounds of radiation to an area close to my easophagus. I have a slight lump in my throat and my doc gave me a numbing liquid, but it numbs my tongue so I prefer not to use it. Will try manuka if it gets worse. Cheers, Rikke

Good to hear. In case it isn’t clear from my name, I am female, so thankfully no chest hair to worry about 😜