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RJN

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Posts posted by RJN

    Mri scan

    in MEMBER UPDATES

    Posted

    Just to add to Lily’s comment: the stated aim of my medical team is to keep me alive and well till there is a cure. Even very jaded oncologists are now expressing some hope that this could happen, as they see more stage people doing better for longer on the new treatments. I am with you on not expecting to get to 90, as the treatments in themselves are tough on the body (I feel like I have aged 10 years in the last 2), but it is worth hanging in there as new stuff is coming out constantly, including many trials for low-PDL non-mutation LC. X

    Keytruda vision side effects

    in INTRODUCE YOURSELF!

    Posted

    Hello and welcome,

    I am in a bunch of Facebook Keytruda groups, and vision issues, sometime just temporary, are very common. But of course you should always raise it with your medical team. Also ensure that your thyroid is being checked regularly as Keytruda is known to the thyroid and may cause eye problems.

    Wonderful to hear you are otherwise having good results!

    Biopsy results….

    in GENERAL

    Posted

    Obviously the medical team should be able go tell you more - and there will be others on here with better knowledge of squamous cell. But from what I can see the “moderately differentiated” could decent news as it is used to describe “Stage II where Cancer is in the organ where it first started. It may be a bit larger than stage I and/or may have spread to nearby lymph nodes.” I think the big thing here is to get a biomarker analysis so you can find out if immunotherapy or targeted therapy _i.e. newer treatment types which may be more effective than traditional chemo.

    Hang in there! 

    Lung Mass

    in INTRODUCE YOURSELF!

    Posted

    Hello Italia,

    Sorry you are going through this. It is horrifying looking at the scans without a medical professional to guide you and give their opinion. Naturally, no one on here is qualified to tell you what the scan shows, but there are many possibilities. I expect they will order a PET scan and a lung biopsy as a next step to confirm the nature of the mass. As I am in the UK (and we assigned teams rather than individual doctors), I don’t know what the system is like in the US, but would you be able to request another doctor to look at it and possibly get the ball moving on further tests if necessary?

    Please keep us posted - wishing you all the best, Rikke

    My updates (22 Years old, NSCLC)

    in MEMBER UPDATES

    Posted

    A Happy Christmas to you too! (And everyone else on here).

    Re your headaches. I have been on Keytruda for 15 months now, and haven’t experienced headaches. But in the various immunotherapy FB groups I am in, people have 100s of different side effects so it wouldn’t surprise me. One thing I would recommend is that you stay super hydrated as it seems to decrease many of the side effects from Keytruda. And of course tell your medical team.

    Hoping to learn more about LC - Darius

    in INTRODUCE YOURSELF!

    Posted

    Welcome Darius,

    I only just saw your message (ironically I was in SG/KL for work). I have been on Keytruda for 14 months, but my PDL is high. However, my oncology team (and indeed many UK oncologists), are very hopeful about the combination of systemic therapy (immuno, chemo or targeted) with aggressive use of radiotherapy for people with oligometastatic stage 4 cancers - I.e. people with 5 or less metastases. See description of the newest trial which I was in here: https://clinicaltrials.gov/ct2/show/NCT02417662

    I know that a couple of UK folks on this site have had this combo, and are doing quite well.

    All the best to you, Rikke

    Mrs.

    in LC SURVIVORS

    Posted

    Dear Patsy,

    I am so sorry you have had such a hard time, but glad to hear that you are cancer clear. I am also stage 4 NSCLC and have been on Keytruda for 14 months now, with another 10 months to go. I have not had severe side effects, but my medical team have been clear that since Keytruda is so new and due to the way it interacts with the immune system, there is so much they don’t know about medium and long-term effects. I find that the most helpful place to get some answers around side effects are the Facebook groups dedicated to immunotherapy, such as ‘Keytruda and I’ as well as ‘Immunotherapy Support Group’. There are thousands of Keytruda/immuno users, so the likelihood of finding others with similar symptoms is quite high.

    Personally, I do think Keytruda is a wonderdrug. I am not sure I would have been alive and well without it, and for however long it lasts, I will be grateful. But we are in new territory, so of course it won’t be everyone’s experience.

    All the best, Rikke

    Mri scan

    in MEMBER UPDATES

    Posted

    My goodness Justin, this is insane. It certainly does sound like you have landed in the wrong place, and you need much, much better care. My experience of the NHS here in London couldn’t be more different. I can see on the NHS website that you have the right to be referred. I’d imagine that either your lung cancer nurse or MacMillan nurse can help you. I can certainly vouch for UCLH, and others speak highly of Chelsea Royal and Guy’s. If you want something closer to home, I am happy to ask around in the various FB groups I am in.

    It sounds like such a nightmare, but it is worth the fight.

    Covid and no covid

    in GENERAL

    Posted

    Glad you are ok, Bridget. I had COVID over Christmas last year. Tested negative al through feeling I’ll, and just when I felt ok and was about to travel home for Christmas my test came up positive. I have heraf multiple similar stories. Seems the newer variants show up on LFTs only very late. On top of that news here in the UK is that there is a major cold epedemic, possibly as a reaction to people not being out much for a few years, so normal viruses are more vicious. So al in all, prob best to go with symptoms rather than tests…. Hope both you and your wife get through this ok.

    Newly diagnosed - stage 4 NSCLC

    in INTRODUCE YOURSELF!

    Posted

    Hi June,

    I had a similar experience as you. The vast majority of those of us diagnosed stage 4 are floored as it often comes out of the blue. You can get lots of helpful pointers on this site, but the No 1 thing to know is that stage 4 is NOT a death sentence. I am coming up to my year one since diagnosis, and I can say that although a big chunk of the year has gone with treatments, test, worries etc, I have just spent the last 3 weeks at various family parties, festivals, concerts etc. I am now convinced I have time and I am not wasting it worrying. So you will likely have some months of grief and worry ahead, but life is absolutely and in no way over! 
     

    Having said all this, this is tough, and this site is such a help. So stay with us and ask any question as you go through the maze.

    Best, Rikke

    Female age 31 Chest X-ray results, need some advice

    in GENERAL

    Posted

    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
     

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