RJN
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Posts posted by RJN
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A few more days to go. Had a lovely trip to Denmark - bit of seaside, cocktails in the harbour and a banging Depeche Mode concert. Also had a good chat with a beautiful and vivacious old friend who I discovered has lived on steroids for 20+ years and I had no idea - so that was encouraging. I am as ready as I will ever be, although nervous about cancellation like last time. Will try to fill up my days with golf and gardening. Send me good vibes please x
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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!
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Thank you lovely people. I expect to have a recovery period of 2-6 weeks. I.e. 2 weeks of being very slow, and 6 weeks till I can do normal stuff such as run and play golf. I can deal with the physical stuff - just worried about the mental side. I am a steady-eddie, but a lot of depression in my family, so its a real worry. Not sure how I would cope with mental health issues on top of everything else.
But guess I’ll know in a few weeks’ time…
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My bilateral adrenalectomy is now scheduled for 6 July. Still laparoscopic, but it’ll be a bigger surgery than the original, and I will have to live with steroids for life. But both the surgical and the oncology teams were in agreement that this was the way forward, and would give me the best chance of a full remission.
Heading back to Denmark for a week to see family - who knows when I will be able to travel again. And bought an aircon, so I can recover in some comfort (London is getting hotter each year). So getting ready!
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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
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I had 2 courses of consecutive radiotherapy. First 6 weeks of conventional to my chest, and then 2 shots of SABR (also called precision radiation) to my adrenal. My understanding is that you do not radiate the same place twice, but there shouldn’t be much of an issue having another area blasted. In fact I think it is quite common to use it to “clean up” recurrences if other areas are responding well.
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Thanks Pam, had a chat to my clinical (radio) oncologist yesterday and I did raise the possibility of further radiotherapy. He said that 1. They couldn’t repeat SABR to the same gland. And 2. Radiating the other one would do as much damage as removing it, with a less certain outcome. So basically radiotherapy is out. Meeting with the medical oncologist Monday, so will discuss the chemo route with them then. But judging from the clinical oncologist reaction yesterday, I think they will be likely to recommend surgery as it has the best prognosis. But of course crossing my fingers that the blip isn’t showing any activity (unlikely but one lives in hope)…
Very annoyed at the whole thing, but cutting back my jungle-like backyard yesterday turned out to be good therapy and removed most of my anxiety….
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@LilyMir Taking out both adrenals is a much more extensive operation as it takes about twice as long, plus I will need to have my cortisol stabilised afterwards. And they want another PET as well. I also want to talk to the oncology team about potential other routes. I never had chemo, so wondering if that would be an alternative. It might be rough, but so is living with adrenal insufficiency for the rest of my life. Darn it….
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Soooooo. It was too good to be true! My surgery has been postpone, as a blip was seen on my other adrenal gland in my latest scan. So I am now facing potential bilateral adrenalectomy and a lifetime of steroids. It’s a tough one to face when I was looking forward to a quick in-and-out and then possibly free if cancer (at least for a while). I am pretty gutted, but just gotta put one foot in front of the other…
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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.
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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
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@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 -
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Hello!
Curious about this - Are you sure you will need a port? At least here in the UK is is very rare for immuno. Even people with difficult veins tend to get a picc lines, but most of us get a normal cannula. Apparantly immunotherapy because infusions are short, spaced over many weeks, and is much less toxic than e.g. chemo, the requirements for veins are much less. (I recently had a nurse who had not done immuno before make a mess because she didn’t realise she could just use the big but shallow veins on my wrists and hands).
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Absolutely - get a CT as soon as possible. Most likely nothing, but even if it is, sooner is definitely better. X
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Thank you for sharing, Izzy. I cannot imagine how difficult it must have been, but hopefully the beautiful send-off was the first step to coping with it.
Please don’t feel obliged to come back here, but of course you are always welcome ❤️.
All the best to you and your family. -
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
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@Tom Galli unfortunately the aftermath of COVID, Brexit and NHS strikes has resulted in rather long wait lists, even for urgent procedures, so as I am fortunate enough to have private insurance via work, I am able to do it quicker with a smallish Co-pay (with the same surgeon who would have done via the NHS to ensure the best communication). I have of course consulted with my oncologist team and got the green light.
I will attempt the count….
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Just an update: after far too many hoops, I am finally scheduled for surgery in early June - laparoscopic adrenalectomy (non-invasive removal of left adrenal gland). I opted for a private operation, which turned out to be relatively affordable here in the UK.
Given my otherwise clear scans, this will make me effectively without any active cancer, so it is actually quite exciting. Amazing to have got to this point. Obviously, there are no guarantees that I won’t have a recurrence, but if I can even have a few months without evil growths inside my torso it will feel like a victory.
I never had surgery, full anaesthetic or spent a night in a hospital so a bit scary, but actually quite excited to have the option.
Wish me luck. X -
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.
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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
My first ever surgery!!
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Hello all!
On the other side - it was a pretty big ordeal. I was under for a full five hours. Right adrenal came out a breeze, but the left which had been RT’ed was apparently quite a struggle due to various tissue damage, so took almost 3 hours due to adhesion and risk of surrounding tissue damage. Surgeon says he is 90% confident it’s all gone, but we won’t know for sure until a scan in month or so. So the hoped-for NED hasn’t materialised yet. The night was dreadful as I had to have blood sugar checked hourly. But around 6 this morning I started feeling normal and although tired, I am myself again.
Hopefully I can go home tomorrow - depends on whether blood sugar and cortisol are stabilised. But obviously relieved to have come this far.
Thanks all for your support, Rikke
(P.s. at an American private hospital in a posh part of London. Interesting how much fancier it is than even the most state-of the art places under the NHS. Wonder if you all attend such hotel-like facilities?)