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RJN

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Everything posted by RJN

  1. Did anyone experience a worsening cough after starting Keytruda? I had a mild cough before, but seems it has got a lot worse in the past week. It’s productive and very loose, but I am struggling with the rasping sensation in my lung to the point where I can only sleep on the side.
  2. Oh my goodness. Dear Susie, you cannot beat yourself up like that. Of course you do not deserve to suffer. I too smoked for 30 years, and although I quit 7 years ago managed to join this group of LC survivors. As you will find, there are many never-smokers here, and I am sure we all know long-time smokers happily puffing their way into their 80s, so life just isn’t fair. Of course there is a link, but blaming yourself will not give you the extra years you really want. Going up cigarettes is a real battle, and I wish you all the best in this first step. Keep reaching out to people on this site and others when you feel down, so you can get some support and strength to get through what sounds like dark times. All the best, Rikke
  3. I have been told this would be an option for me as 2nd or 3rd line treatment, so would love to hear your updates!
  4. Dear Joanne - that sounds so tough for you both. I can’t be of too much concrete help as I am a patient myself and not in any pain (yet). But I know how frustrating it is to look after someone who does not work with you to make it easier. I have been there for decades myself. Please make sure you look after yourself, and try to reach out and get at least some support from outside - friends, family etc. It is entirely natural to be angry, resentful and scared, so find people who can listen and who have your back. Always know that it is the disease and the difficult situation, not him, not you. Never blame yourself - you are doing the best you can. The last thing you need is mutual resentment and wear on a long and solid marriage. all the best wishes, Rikke
  5. 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.
  6. 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!
  7. Thank you, I joined the FB group!
  8. Finally got confirmation that my PDL numbers are high enough that I will be given only immunotherapy for my first treatment. It is obviously a relief not to have to jump into chemo straightaway (although I am aware it may be needed later). The doctors also seem to prefer this option for someone who is still relatively young, healthy and overall not affected by the cancer (yet). I have looked but can’t seem to find anybody on this site who had this as the first treatment, and was hoping to find someone to share their experience. Please let me know if you have some nuggets of insight so I have an opportunity to prepare myself mentally. Thank you, Rikke
  9. Update: As it turns out, I think I got “lost” somewhere in the system, but finally managed to connect and talk to a doctor (lesson here, don’t be too patient!). They are still missing my PDL levels, so until I get these I can’t get a final plan, but depending on PDL I will either be on Pembro (That’s what Keytruda is referred to here) alone or the triplet therapy. Each every three weeks for 4 cycles. The good news is that I am suitable for the new KRAS drug Sotorasib, so that should be available for second line treatment. Always good to know there is a plan after standard treatment. it also seems the triplet and/or keytruda has relatively low level side effects, but of course scoring this site for your experiences. The bad news is that treatment will take 3 weeks or so before I start, but as I am feeling ok right now, I trust that this won’t be a big issue. Clinic starting me on a heap of vitamins and folic acid first. No real questions right now, but any thoughts welcome!
  10. Just to check in. How long did you wait for your treatment plan? I had the first formal diagnosis of stage 4 NSCLC three weeks ago, based on bronchoscopy and PET-CT. I was told it would take another approx 1-2 weeks to get my full results and plan, incl bio markers etc. I met with oncology team 2 weeks ago and got some extra blood work (the liquid biopsy, I believe), and they said they’d be in touch last week. Given that it has now been nearly 3 months from my first GP visit, I am getting somewhat anxious - and even worse, my family are annoying the h*ck out of me with their constant pushing. Any words of wisdom?
  11. Gosh, I am in awe of what I am reading in this forum. Although I am generally of a positive mindset, I am actually starting to be optimistic seeing all the real-life story of people halting this nasty disease in its tracks. Reading about your journeys, ups and downs also helps me mentally prepare for the road ahead. I am so grateful for all of you sharing. And yes, as someone working daily with statistics and (mis)information, I am conscious of the dangers of Dr Google - but he did lead me here, so not all bad😜
  12. 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.
  13. 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
  14. As newly diagnosed, I am hoping that this forum will be of support and help me understand this new reality I find myself in. A bit about me: I was diagnosed with possible lung cancer around a month ago and had the stage 4 NSCLC diagnosis confirmed two weeks ago. I am now waiting for my treatment plan as they are mapping at my biopsy in terms of bio markers etc. It feels a long wait, but from what I understand, I should be happy they are doing all this work. I am fortunate to be assigned to a very good research hospital here in London, and will hopefully be included in a stage 3 research study. I am relatively non-symptomatic, barring some shortness of breath. Unfortunately, the cancer has caused a blood clot in my shoulder which causes some pain and has me on light painkillers and blood thinners. I do not feel optimistic as I know my prognosis isn’t great, but I am in a positive mood - I guess the lack of real symptoms, relatively young age and my general good health makes me feel a bit invincible (I can’t possibly have a fatal disease!). The hardest part so far has been dealing with friends and family, some of which have taken it very hard. Anyways, I am so glad to have this forum to get feedback once I get into the weeds on treatment. Thanks for being here. Rikke
  15. Thank you so much. I feel like I am waiting forever for my results as doctors want a full bio marker mapping. This made sense to me and making me feel more confident that the wait is worth it.
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