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RJN

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RJN last won the day on November 1

RJN had the most liked content!

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Profile Information

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

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2,500 profile views
  1. Yay - from pear and grafruit to a couple of plumbs! (Sorry, I have always found it helpful to envision my lesions as fruits)
  2. Hi @Ginny22 - lovely to hear that your mum’s treatment is yielding good results. My oncologists seem to agree that radiotherapy combined with systemic therapy has the potential for more durable results, so I do hope they will offer this. FYI, my mets were 5-7cms when I was treated, so most certainly not small at all. X
  3. I cannot agree more with @Karen_L. After three years of COVID lockdown, then cancer diagnosis, immunotherapy, radiation and surgery, I felt 10 years older and constantly exhausted and fatigued - and my sleep was crazy disturbed. My stamina was on par with my 75 year old dad. But made a decision to get back to myself. I did Couch 2 5k, Weekly gentle pilates, swimming when I could, walking on bad days. It took a good 3-4 months before I slowly started to feel a real difference. It has been a year now, and although my sleep isn’t perfect, I wake up refreshed on most days, and feel relatively “normal” again. X
  4. Very late response from here, but just chipping in, in case it is still helpful. I have the exact same mets. My medical team at a UK research hospital are doing a tonne of research on treatment of oligometastatic cancer, and my protocol has largely followed this (see my signature for a full history). Basically, they believe and are attempting to document that the combination of systemic treatment (in my case immunotherapy) and control mets with RT/SBRT/surgery is the way to go. There are a LOT of evidence that oligometastatic cancer can be treated as curative cases, although some doubt if brain mets are involved. This doesn’t mean we are considered cured, but basically they will knock out any recurrence that comes along in a similar vein to treatment of stage 1/2. It is also becoming increasingly common to use RT alongside immunotherapy and chemo, although it still hasn’t been adopted as a recommendation by NICE (similar to the FDA).
  5. Close Friend - good on you for checking in for your friend. As a fellow stage 4 adonema NSCLC, I understand the concern. I was lucky enough to have high PDL, so didn’t have to worry about chemo, but only had pembro monotherapy. But the majority of people in my various immuno group had the combo. My understanding from them are that it really isn’t nearly as rough as one would expect. And many, many of them are now NED and living years as cancer free. Modern chemo have far fewer and far milder side effects than we have been conditioned to see on TV etc. (The rough ones are still being used e.g. for lymphoma, but rarely for first-line LC). With stage 4, systemic treatment is very important, as it surgical/radio cannot weed out stray cancer cells the same way. I would encourage her to join some of the immunotherapy groups on Facebook and hear people’s experiences before she makes a decision.
  6. Gosh, you have been through the mill. Cannot imagine going through major surgery with so little result. BUT - I am a huge believer in immunotherapy and I keep seeing something akin to miracles for immuno people, so if you are a candidate there is plenty of reason for optimism. My cancer had spread to lymph nodes as well, and disappeared completely with Pembro ( Keytruda), leaving only lesions on my adrenals, which they removed surgically two years into treatment. Fingers crossed you will have a good result as well.
  7. 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.
  8. 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.
  9. 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.
  10. RJN

    Sclc

    @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
  11. RJN

    So quiet

    Sending you positive thoughts @Karen_L! Enjoy the holiday spirit
  12. 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)!
  13. Crossing fingers. I am waiting for my results as well…
  14. 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
  15. @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.
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