RJN

Thank you for the explanation - made me laugh! Sounds truly awful, but I definitely am not one to talk as my go-to comfort food is a big Mac!

That is rough, Bridget. So sorry to hear about your wife. Although breast cancer prognosis is of course excellent, a mastectomy is no joke. Good that you have each other. I have no idea what hamburger helper is (although I can imagine and it sounds a bit yuck) - but whatever gets you through is great in my book! yay for kitty - the little blighters are the best cancer care as far as I am concerned. X

Here in the UK, the NICE guidelines (which defines the standard of care) states CT as the main monitoring method. PETs and brain MRIs are only indicated if there are signs of change or progression. This is partially due to the cost and partially to limit radiation to the brain/body. PETs in particular are to be avoided on a regular basis due to the use of nuclear medicine.

I think a sick kitty would always be the final straw. Mine is my little soldier who is the only one I want around when I am feeling unwell. Hope she is ok - cats do tend to go through rounds of spewing, so hopefully no big thing. X

Dear Jacob. Although I may not know the US system, I feel confident to state that this is far beyond the pale of what is acceptable in just about any system in the world (and I lived in a lot of so-called developing countries). Hope Tom’s advice will move things to a better place. I am utterly shocked. Wishing your mum and you all the best, R

@LovingWife Out of the mutations you list, I know that some FGR and some KRAS mutations have targeted therapies that may be possible, so definitely worth asking about. It sounds like they are going all out on the chemo/immuno combo though, so hopefully he won’t need it for now, but good go know these things for your back pocket. Personally, I have got my main cancer and lymph nodes under control for now, but already have 3 separate action plans/lines on the table in case of recurrence. Helps a lot mentally, I find. all the best for it, Rikke

Oh my - that is rough, Bridget. Sending positive vibes to you, your wife and your friends over the Atlantic. Do try to enjoy your trip to NYC! X

Probably no cause for alarm, as phlegm isn’t all that typical for LC. No need go panic, but nevertheless, many of us wish we would have had a scan sooner after niggly coughs (both dry or wet), so it really is best to get it thoroughly checked out. Let us know how it goes.

Absolutely - get a CT as soon as possible. Most likely nothing, but even if it is, sooner is definitely better. X

Sorry to hear about your mum. This is going to be one of the toughest times - getting to grips with a new reality. But as you will see on this forum, there are plenty of us who have come back from the brink, even with a stage 4 diagnosis, so plenty of hope! Re nutrition etc, my main advice to families is make sure your mum is onboard. Personally, I felt a lot of pressure from friends and family who had lots of well-meaning suggestions. I leave a reasonably healthy life, and cancer treatment can be difficult enough, so not necessarily the time to go on any kind of diet. Mental health is just as important, and if a daily cake is her jam, let it be. Re supplements, it is really best left to discuss with your medical team. Many of the new treatments (especially immunotherapy) have lots of interactions with supplements, so make sure ANYTHING is cleared with the medical oncologists. all the best wishes for your mum and your family, Rikke

Just a few pennies from a relatively long term Keytruda patient: Please do not make any assumptions about what is harmless. For example, you mention CBD oil. While it may not exactly be harmful, my oncologists are very clear that CBD and curcumin can suppress Keytruda effects. I know there is some conflicting evidence, but the point is that Keytruda is a powerful immunotherapy and many, many supplements are contra indicated. So please make sure that the advice is coming from a health professional with a deep knowledge of this particular treatment… I actually have a Chinese medicine doctor living across the street from me - who did my acupuncture when things were rough. She refused to supply any other treatments or supplements since immunotherapy is so unproven in terms of interactions.

Welcome to the group, Rebecca. I have been on Keytruda for NSCLC for the last 20 months, and also connected to hundreds of immunotherapy patients. I would not hesitate a moment to start treatment. You will probably have seen a lot of the scary stories, as those are the ones people often seek help for. But the vast majorities of us have only minor niggles, and a very good chunk have stable disease or even NED. This isn’t merely anecdotal - the pooled studies show that around 20% get adverse effects that require discontinuation, 20% get no side effects at all, and the remaining arm get some side effects (typically fatigue, rashes or colitis). Personally, I have had some minor joint pains and fatigue. But the long term survival rate is 20-25% - far more than other systemic treatments. My results were almost immediate - my lesions were reduced by 70% within a month, and following radiotherapy, all but a small adrenal lesion is dead. I am about to have surgery for the last bit, after which I will be effectively NED - amazing with a stage 4 diagnosis. More importantly, I have been able to live an almost normal life for the last year. Ultimately only you can make a decision, but if all the scary treatments, Keytruda has some of the best safety records, so don’t take all the scary anecdotes to heart. Cancer treatment is tough, but for most this really is one of the “easier” ones. Best, Rikke

Dear Loving Wife, Sorry to hear about your husband, but I am glad you are able to get some hope from the many positive posts on here. There are so many more options from stage 4 people now, and I have come to think of my own diagnosis as a chronic illness that may flare up and may require ongoing care, but not necessarily as a terminal illness. I was diagnosed 20 months ago at 49, with involvement of chest lymph nodes and metastasis to the adrenal gland. I am on ongoing Keytruda (immunotherapy) and had a round of radiotherapy 14 months ago (which I recommend you ask about as the combo with systemic therapy is quite effective). None of the treatments have been particularly rough, and I am living a quite normal life. My main tumour and all lymph nodes are no longer active. I do have a small growth on my adrenal which may be removed in surgery, but being able to operate at all is a positive as that wasn’t even seen as an option a year back. My main advice at this stage is to allow yourself and your family some time off if possible. Treating stage 4 is a bit of a marathon, and a rather stressful time to get through and will take up a lot of your mental capacity for some time. Hopefully, the treatment will be effective and you will slowly start to come out from under the cloud. All the best, Rikke

So much great input here, so just popping in to support some really critical points - and clarify my own… - The sugar/diet thing is complex, and probably not worth prioritising - personally I don’t have a sweet tooth, but if anybody had decided to take my bread and butter (literally - it’s my favourite snack!) during the early days of diagnosis, their prognosis for survival in my omenwould have been poor! - Make sure you really check in with your mum on what is important for her right now. My dad drove me bonkers with his concern, whereas my brothers and friends hung out with me and had a glass of wine and that was the best thing to keep me grounded. Everyone have different needs at this crazy stage. - Like you, I am concerned about opioids, and I would try a few things first, but @JHP is absolutely right that a good night’s sleep is crucial for both physical and mental health at this stage. I would most certainly have moved to an opioid if the other options hadn’t worked. We don’t have much of a palliative care system here in the UK, so I can’t comment personally, but sounds like a great idea.

Dear Jacob, I am sorry to hear about your mum, and reading your post brings me right back to where I was just under 2 years ago. Getting your head around the field is a vastly confusing, especially as you await confirmation of a diagnosis. As others say, this is the first critical step but can take ages. For me, it was an almost two month wait from my initial CT result to starting treatment. Depending on this there are so many different pathways that can be taken. In another LC group I am in, we are 12 stage 4 LC patients, and not two of us are on the same treatment. Once you know more, your capacity for understanding complex information will be a great help so you can read up on options. First thing though is to follow @LilyMirs advice. Dr Google is pretty useless as stats are all pre-immuno and targeted therapies (let alone various advances in personalised treatment that you mention). The real-life stats are on a very different curve but are anecdotal so far. The majority of people I met online around my initial diagnosis are going strong, and are either NED and have stable disease - and living their lives more or less as normally. I have come to think of my own diagnosis as a chronic illness, rather than a terminal one. It does take mental energy, and all the treatments etc is a major time-suck, and there is always the risk of complications/progression, but I can still run my international business, go travelling and live a fairly normal life. I did take 3 months off initially though, so I could focus 100% on my health. re the back/rib pain. Here in the UK, we are less free with strong painkillers than in the US, so my perspective is a bit different. I had bad shoulder pain and was given a combi of paracetamol and codeine, with the occasional ibuprofen gel. It did the trick, and I would recommend trying this first, w the oxy and opioids as a second line. I have also had very good results from acupuncture (but only from a very experienced therapist). I had quite a few family members get highly dependent on opioids, so I would personally only take these as a last resort. Finally - it is tricky being far from your family. I am in the same boat as my family lives in Denmark (a two hour flight/five-hour journey). Initially, they came over often, but I eventually found it a bit much, as I just wanted my life to get back to normal after the initial shock and confusion. Your mum’s journey is likely to be a marathon, not a sprint, so it is great that you can be flexible and be there for her when she needs it. Keep us posted, Rikke

Absolutely. I had a heavy round of radiotherapy a year ago, and now seem to catch every respiratory infection going. It is an almost guaranteed side effect of hanging out with small children that I get some sort of cough. I never used to be susceptible to infections, so was also initially really worried. In addition to probably being vulnerable due to treatment, my oncologist says that there are many, many more chest infections going around post covid, so the medical team is overwhelmed with worried patients. So you are definitely not alone, but likely shouldn’t be too worried either. Cheers, Rikke

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!

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!

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

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

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

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.

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Welcome, Mike. Sorry that you have to be here, but it is a really good forum. I too have NSCLC with spread to lymph nodes amd adrenal gland. I’ve been treated with Keytruda and a long course of radiation since August last year, and am doing pretty well. Hope your treatment is working well.

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