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RJN last won the day on January 26

RJN had the most liked content!


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  • City
  • Province or district (if non-US)
    London, UK
  • Country
  • Status
    Lung cancer patient/survivor
  • Interests
    Stage 4 NSCLC

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  1. 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.
  2. 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.
  3. 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.
  4. RJN


    @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
  5. RJN

    So quiet

    Sending you positive thoughts @Karen_L! Enjoy the holiday spirit
  6. RJN

    So quiet

    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)!
  7. Crossing fingers. I am waiting for my results as well…
  8. 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
  9. @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.
  10. 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
  11. @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.
  12. 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).
  13. 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.
  14. RJN


    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.
  15. RJN


    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).
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