RJN

There are trials on stage 3, but I think stage 1 people have more immediate and probably better options. As someone who has gone through 2 years of immunotherapy and deeply involved with a forum for immuno-patients, I can testify to the wide range of side effects and uncertainty of outcomes. So while it is an absolute miracle drug for some (including myself) and give many of us hope for a future that wasn’t remotely feasible before, I wouldn’t recommend it to someone with other options. That was the long way of saying that I don’t believe it would be ethical for stage 1 until we know much, much more about why it works for some, but cause harm to others.

I would tend to side with @edivebuddy here, based on my own experience. I had SBRT to my adrenal gland, which initially appeared to work, but resulted in an aggressive recurrence a year later. Granted, my surgery for the same adrenal gland was much tougher than SBRT and I am only 7 months out, but I would have taken the surgery first had I been given the offer. As a counterweight - the lesions in my lungs and lymph nodes eradicated with a combo of conventional radiation and immunotherapy.

Hi Laurie, Google is a beast and you did well for staying away. Survival statistics are no longer relevant to most lung cancer patients as new treatments like immunotherapy, targeted therapies, and combinations of treatments are rewriting the script for many, many patients. I saw my main lung oncologist last week, and we talked about how different his job is now. Two and a half years ago when I was diagnosed, a stage 4 diagnosis was still considered a death sentence, and now they have no way of predicting the outcome. One major development is that oligometastatic LC patients (I.e. with fewer than 5 non-brain metastases) are now considered an entirely different category and highly treatable, with a real chance of remission.

@Angelina sounds like you have been through the wringer. I can’t help on SCLC or neuropathy, but on the sugar question it is a qualified “no”. I do think that keeping healthy and avoiding too much sugar (and carbs which are converted to sugar) helps you get through cancer treatment easier. However, except in very specific cancer types (not SCLC), sugar does not feed tumours. I really like this article which sets out the evidence to date: https://www.nytimes.com/2023/07/10/well/eat/sugar-cancer.html

Sending you positive thoughts @Karen_L! Enjoy the holiday spirit

Happy holidays to everyone. Hope the quiet is because people are either putting aside their worries for a bit, or celebrating a good spell (like me)!

Crossing fingers. I am waiting for my results as well…

Welcome Sue! Sounds like you are living a great life, but plenty of people on here to share the ups and downs of lung cancer. Cheers, Rikke

@GBJ - yes, adjuvant radiotherapy in combination with systemic treatments (immuno, chemo or targeted) is fast becoming the gold standard for stage four cancers with limited metastases (oligometastatic). Personally I had conventional to my lung and lymph nodes, and SABR to my adrenal metastasis. Lots of trials are ongoing, with stellar results. I have quite a lot of cancer mates who had this combo and all are faring well a few years in. So worth asking.

Hi GBJ, Having recently experienced a combo of NED of original tumours but growing metastases I am a poster child for the weird ways of immunotherapy. Even the top oncology team here don’t have a solid scientific explanation for this type of thing. Pseudoprogression isn’t super common, but it does happen, so fingers crossed that is all. Even with the uncertainty raised by your friend, I’d still go ahead with the molecular testing if you are in a position to. In my various immuno groups, there are a fair few people who have moved on to targeted therapies and have done well on them, so if it is covered by insurance it is worth looking into as a next step. Take care, Rikke

@Lmodge - Karen is right that targeted treatments and immuno-based vaccines are muddling the picture, but for standard immunotherapies such as Pembrolizimab you are correct. In most countries outside the US, 2 years is the limit for NSCLC for immunotherapy. I believe in the US it’s a bit more mixed due to permitted off-label use. The argument is partially financial and partly that the balance between severe side effects and effectiveness after two years is less than clear. Personally, I am finishing my immunotherapy after two years in November, and my oncologists believe that it is likely that it will keep the cancer at bay at least for a while, but I will be put on KRAS-inhibitors or chemo if there is a recurrence. It will be easiest for you to find your target group in one of the dedicated immuno groups on FB such as Immunotherapy Support Group. Plenty of people there fitting the profile.

I have been following the science on the various types of “vaccines”, since I was offered a stage 1 trial rsa one when first diagnosed. I genuinely think there is grounds for optimism in this field. Some of the trials I have followed have incredibly positive results, with up to 40% complete response rates (the papers I have are in Danish video format so can’t share). The big issue so far is that in order to get proper results, patients’ immune systems need to be strongly suppressed, so it comes with a massive dose of chemo. So only very strong patients can benefit at this stage. But the technology is really moving fast, so worth keeping track of. My oncology team also seem to have high hopes for it. (and as a political scientist, I would think this isn’t the most appropriate forum to cast doubts on an entire field of study or science in general).

Blimey! Definitely seek a second opinion and jump up and down if you have to. I am at UCLH MacMillan Centre in London, which is only an hour away by train to Euston from Coventry. They have a great trials programme. Others have recommended the Royal Marsden. Good luck.

Fingers crossed. Let us know how you get on. When you get to the immunotherapy, let me know if you need some pointers to various groups. They can be helpful to navigate the weird world of immuno.

Oh, just an addition. I didn’t get syrup with codeine - just codeine tablets combined with paracetamol. When I tried syrup previously it didn’t seem to be as effective - but perhaps you can get a script for both. What it does is that it dampens your cough reflex, so you can get through the night (I had a horrible feeling of water slushing around my left lung that made me feel like I was drowning).

Hi Karen, Sorry to hear your news. Are they really saying there is nothing they can do? Are you at a major cancer centre? I have to admit I haven’t heard about adenoid cystic carcinoma, but have you asked about trials? X

Welcome Lisa - so sorry you are having to come here, but also rest assured that there will be plenty of support throughout you journey. I haven’t had chemo, so I cannot offer any insights. But I have been on immunotherapy for a couple of years now (pembrolizimab), and it has been very effective. My main cancer and lymph nodes are now clear of active cancer, and the metastases I had have been removed surgically, so now just holding my breath to get my oncologists’ view on what is next. Re side effects: immunotherapy is a tricky beast. Many have absolutely no side effects, some have quite severe ones. Some get them straightaway, some after several years. Oncologists will generally admit to being a bit in the dark about it - mine take plenty of notes when I describe any issues. I am a member of numerous immunotherapy FB groups which have been helpful in getting my head around it. In general, my impression is that the vast majority have no or very limited side effects. Fatigue, sore joints, itching and colitis seem to be common ones. Finally, I had a quite nasty cough in the early days. Codeine (a very mild opioid) was the only thing that seemed to help me. I only took it for about a month, as the immunotherapy stopped my cough. All the best, Rikke

Dear Elki, That is a rough diagnosis - no getting around that. But having been through the mill for two years and a lot of different support groups, we see so many people ending up in a better-than-expected place. Some really do respond to Keytruda with low PDL1, and I am in touch with someone with a similar diagnosis (your age), who went NED after a round of chemo and radiotherapy. The two things I would recommend right now is 1. Ask about radiotherapy. There is a lot of evidence that for stage people with limited metastases (oligometastatic disease), the combination of systemic and radiation can be effective. 2. Ask about and look into trials. There is so much going on right now. It would probably require travel as most are in the large cancer centres, but could be important. I would also recommend joining the Immunotherapy Support Group UK on Facebook, as there are many supportive people with positive stories on there. All the best, Rikke

Happy Birthday and many good wishes for your wife’s speedy recovery!

Ah yes - Lily is so right. Tell family to ignore Dr Google. I banned my mum from looking and she said that it helped her a lot. Even if she saw terrible things, she knew that this was seriously outdated!

Dear worriedman, As a former heavy smoker, I can understand with your concern. However, not all smokers get lung cancer, and not all lung cancer patients are former smokers. Blood tests will not tell you much, and hoarseness/chest pains can be down to many other things. Having said this, you need to start by getting an x-ray. This is step 1 to understand whether there is anything to worry about. Even if your doctor isn’t inclined to do this, make sure you get one (a private one isn’t all that expensive, if you have to). If there is nothing there, you can think of it as a wake-up call. And IF there is anything suspicious, you can proceed and hopefully get treatment soon. I don’t want to be the nagger, but try to find a way to quit. I quit at 41, initially by vaping, and it is the best thing I have ever done. I doubt I’d have been able to survive all my treatments if I was still a smoker. So it is ALWAYS a good time to quit. Please get an x-ray and come back to tell us how you are doing, Rikke

Hi Ellen, Welcome from a fellow Brit with a similar diagnosis. Sorry you are having to come here, but hoping you will find it as helpful as I have. I was diagnosed at 49 two years ago. There are some very knowledgeable people on here who can help you navigate the coming months. Keep us posted on what happens next, Rikke

Hello admins! Is there a way to close topics/shut off comments from threads (i.e. Not deleting, just preventing further comments. I have noticed a couple of instances where people passed away and someone comments months later - possibly not noticing the dates. Prob not a big deal, but was just thinking that for a relative grieving that might not feel great. Cheers, Rikke

Hi Mike, That is incredible. We are cancer siblings! I was also diagnosed in August 2021, have had immunotherapy and radiotherapy on a trial for my NSCLC stage 4 and was all clear. But discovered metastases to both adrenals. The recommendation from my team was unequivocally to have them both removed in surgery. They felt that would be my best chance of NED. So I am now 10 days out from surgery, and getting used to my new regimen of steroids. If you end up in a similar path, I can share my experience in more detail. I’ll be extremely curious to hear what they recommend to you. Best, Rikke

Hi Johnny, Sorry to hear you are going through this. For what it is worth, it will probably be the mentally toughest part of the ordeal. Once you have a diagnosis and have shared with those who need to know, you can move on to the “action” part. As you will see in this forum, lung cancer need not be a downhill spiral. Many do really well on modern treatments. Only you will know who to share with. I have a very big circle of friends and family, so I split mine into a few different groups: 1. Close friends who I told immediately as I needed their support 2. My dad who I told when docs were fairly certain, but before final results (he is a doctor so knew he would want to be part of the process) 3. After diagnosis and once I knew my treatment plan I talked to remainder of my close family and friends, as I wanted to be able to tell them with a clear plan, so they didn’t have to wait and worry 4. Everyone else (personal contacts) - made a Facebook post. It made it easier for everyone to know, and not be the subject of rumours and misinformation. And 5. Work network, only some people know, as and when it feels necessary. I think most of my network know now, but as it has been almost 2 years and I have seen most people in person, there is no longer much shock and drama… Personally, I think it was a balance between my need for support, but also not having to carry other people’s worry and grief. But it did help me having a bit of a strategy (this is what I do for work, so guess it is ingrained). All the best, Rikke