RJN
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Posts posted by RJN
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6 hours ago, Karen_L said:
That’s cruel, IMO. Do they at least post results in an online chart so you can review them?
No because the issue is that there aren’t enough radiologists to interpret the scan, so no reports. At some point last winter they were sent to Australia to get somebody to look at them!! It is getting better though, but a week we can only dream of!
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20 hours ago, LilyMir said:
Thanks @Karen_L, modest results compared to what I saw on media but good news nonetheless. Here is to hoping such therapies will one day become a cure.
I have been following the science on the various types of “vaccines”, since I was offered a stage 1 trial rsa one when first diagnosed. I genuinely think there is grounds for optimism in this field. Some of the trials I have followed have incredibly positive results, with up to 40% complete response rates (the papers I have are in Danish video format so can’t share). The big issue so far is that in order to get proper results, patients’ immune systems need to be strongly suppressed, so it comes with a massive dose of chemo. So only very strong patients can benefit at this stage. But the technology is really moving fast, so worth keeping track of. My oncology team also seem to have high hopes for it.
(and as a political scientist, I would think this isn’t the most appropriate forum to cast doubts on an entire field of study or science in general).
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Oh, just an addition. I didn’t get syrup with codeine - just codeine tablets combined with paracetamol. When I tried syrup previously it didn’t seem to be as effective - but perhaps you can get a script for both. What it does is that it dampens your cough reflex, so you can get through the night (I had a horrible feeling of water slushing around my left lung that made me feel like I was drowning).
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Welcome Lisa - so sorry you are having to come here, but also rest assured that there will be plenty of support throughout you journey.
I haven’t had chemo, so I cannot offer any insights. But I have been on immunotherapy for a couple of years now (pembrolizimab), and it has been very effective. My main cancer and lymph nodes are now clear of active cancer, and the metastases I had have been removed surgically, so now just holding my breath to get my oncologists’ view on what is next.
Re side effects: immunotherapy is a tricky beast. Many have absolutely no side effects, some have quite severe ones. Some get them straightaway, some after several years. Oncologists will generally admit to being a bit in the dark about it - mine take plenty of notes when I describe any issues. I am a member of numerous immunotherapy FB groups which have been helpful in getting my head around it. In general, my impression is that the vast majority have no or very limited side effects. Fatigue, sore joints, itching and colitis seem to be common ones.
Finally, I had a quite nasty cough in the early days. Codeine (a very mild opioid) was the only thing that seemed to help me. I only took it for about a month, as the immunotherapy stopped my cough.
All the best, Rikke
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On 8/26/2023 at 1:20 PM, LouT said:
Rikki,
Next to "ice cream" NED is my favorite word. I'm so glad for you and look forward to many more such reports in the future. You've been through a lot and you deserve to be well.
Lou
I don’t a sweet tooth, but at the age of 50 I discovered the joy of ice cream when a couple of Italian women opened a gelato shop on my high street. Of course, I was diagnosed with diabetes a few months later - so sadly it was a short joy. But NED I will certainly enjoy - although still a bit nervous about what my oncologist team has to say next week.
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51 minutes ago, LilyMir said:
Hurray for NED, just in time for some more Summer fun! Hope this will stand for many years to come. Celebration time!
I am afraid we have seen the last of summer here in London today - but what do I care? Sunshine can be bought - NED (or whatever they call it) can’t - whoop! But definitely a nice bottle of vino this evening!
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Whoop whoop! At follow-up with surgeon this morning, I had my PET results. No active cancer!
He did caution that I wasn’t completely out of the woods, as there was an R1 resection on the left side (I.e. they can’t be 100% sure there isn’t some microscopic remains of cancer). But for now, I will take it. Even a few weeks of being cancer free feels like a miracle. I didn’t expect to get a result (let alone a positive one) till my oncologist appointment in September, so a wonderful surprise. First time in all of this that I have actually teared up a bit.
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Ooops - sorry - just realise you have been on here a while….
Hi Johnny, welcome to the forum. Sorry to hear about your diagnosis. Of course no-one wants to be here, but plenty of good advice as you move along the treatment.
Seems like you are already trying to get your head around your options. I know a couple of folks on here will no doubt offer you some general guidance, so just a few things your post mentioned.
1. It is frankly a very very outdated way of looking at LC as smoking or genetic, and I am quite gobsmacked that an oncologist will use such language. I can only hope the doctor in question tried to make things simpler, but IMHO this is an unhelpful and largely irrelevant distinction. While it is true that certain lung cancer types and certain mutations favour smokers, this isn’t an either or. Regardless of the cause, it is the mutations and PDL that determine whether targeted therapy (tablets) or immunotherapy are likely to work. My cancer is likely linked to smoking, but I have been on immunotherapy and my next line will likely be a KRAS inhibitor (a tablet). Reversely, I have never-smoking LC buddies where chemo was the only option.
Another thing you should ask about is radiotherapy. There is increasing evidence that a combination of systemic treatment and radiotherapy may be a winning combo.
2. Re opiods, I am with you and would rather stay clear. When I had some pain early in my treatment, I found that codeine and paracetemol combined did the trick. While codeine is in priniciple an opioid, it is much weaker, and not linked to significant risk of addiction. Still a bit of issues with constipation, but not as bad as the stronger stuff…
Finally, do not look at statistics. They are completely out of date and tells you very little about the current treatment environment. Many of us are alive and living a fairly normal life years and even decades after diagnosis.
Keep us posted,
Rikke
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Dear Elki,
That is a rough diagnosis - no getting around that. But having been through the mill for two years and a lot of different support groups, we see so many people ending up in a better-than-expected place. Some really do respond to Keytruda with low PDL1, and I am in touch with someone with a similar diagnosis (your age), who went NED after a round of chemo and radiotherapy.
The two things I would recommend right now is 1. Ask about radiotherapy. There is a lot of evidence that for stage people with limited metastases (oligometastatic disease), the combination of systemic and radiation can be effective. 2. Ask about and look into trials. There is so much going on right now. It would probably require travel as most are in the large cancer centres, but could be important.
I would also recommend joining the Immunotherapy Support Group UK on Facebook, as there are many supportive people with positive stories on there.
All the best, Rikke
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Dear worriedman,
As a former heavy smoker, I can understand with your concern. However, not all smokers get lung cancer, and not all lung cancer patients are former smokers. Blood tests will not tell you much, and hoarseness/chest pains can be down to many other things.
Having said this, you need to start by getting an x-ray. This is step 1 to understand whether there is anything to worry about. Even if your doctor isn’t inclined to do this, make sure you get one (a private one isn’t all that expensive, if you have to).
If there is nothing there, you can think of it as a wake-up call. And IF there is anything suspicious, you can proceed and hopefully get treatment soon.
I don’t want to be the nagger, but try to find a way to quit. I quit at 41, initially by vaping, and it is the best thing I have ever done. I doubt I’d have been able to survive all my treatments if I was still a smoker. So it is ALWAYS a good time to quit.
Please get an x-ray and come back to tell us how you are doing,
Rikke
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Thanks Tom, yes, I already had both 7 weeks general radiotherapy to my lung and 4 rounds of SABR to my adrenal. So if need be I’ll do it again to the abdomen. But obviously not what I had hoped for after having this surgery. During my own RT, I noted that the abdomen people seemed to have it hardest, since it is so rough on the digestive system. But I have faith in my medical team and will do what they recommend.
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Hi Ellen,
Welcome from a fellow Brit with a similar diagnosis. Sorry you are having to come here, but hoping you will find it as helpful as I have. I was diagnosed at 49 two years ago. There are some very knowledgeable people on here who can help you navigate the coming months.
Keep us posted on what happens next, Rikke
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Hello admins!
Is there a way to close topics/shut off comments from threads (i.e. Not deleting, just preventing further comments. I have noticed a couple of instances where people passed away and someone comments months later - possibly not noticing the dates. Prob not a big deal, but was just thinking that for a relative grieving that might not feel great.
Cheers, Rikke -
Hi Mike,
That is incredible. We are cancer siblings! I was also diagnosed in August 2021, have had immunotherapy and radiotherapy on a trial for my NSCLC stage 4 and was all clear. But discovered metastases to both adrenals.
The recommendation from my team was unequivocally to have them both removed in surgery. They felt that would be my best chance of NED.
So I am now 10 days out from surgery, and getting used to my new regimen of steroids. If you end up in a similar path, I can share my experience in more detail.I’ll be extremely curious to hear what they recommend to you.
Best, Rikke -
Hi Johnny,
Sorry to hear you are going through this. For what it is worth, it will probably be the mentally toughest part of the ordeal. Once you have a diagnosis and have shared with those who need to know, you can move on to the “action” part. As you will see in this forum, lung cancer need not be a downhill spiral. Many do really well on modern treatments.
Only you will know who to share with. I have a very big circle of friends and family, so I split mine into a few different groups: 1. Close friends who I told immediately as I needed their support 2. My dad who I told when docs were fairly certain, but before final results (he is a doctor so knew he would want to be part of the process) 3. After diagnosis and once I knew my treatment plan I talked to remainder of my close family and friends, as I wanted to be able to tell them with a clear plan, so they didn’t have to wait and worry 4. Everyone else (personal contacts) - made a Facebook post. It made it easier for everyone to know, and not be the subject of rumours and misinformation. And 5. Work network, only some people know, as and when it feels necessary. I think most of my network know now, but as it has been almost 2 years and I have seen most people in person, there is no longer much shock and drama…
Personally, I think it was a balance between my need for support, but also not having to carry other people’s worry and grief. But it did help me having a bit of a strategy (this is what I do for work, so guess it is ingrained).
All the best, Rikke
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Just an update: I am back home. Was hoping to just curl up on sofa with the cat, but he is peeved and rewarded me for my absence with a giant poop in the bath tub (he is an outdoor cat so very unusual), ate his lunch and then went out.
Other than feline woes, I am ok. Not much pain, and a few paracetamols is keeping slight discomfort at bay. Feeling a bit shaky and traumatised though. After surgery my blood sugar went really mad, and I was on close monitoring, and now I am home and have to cope with a new regimen of steroids and blood sugar testing. Also my surgeon said he might discuss adjuvant radiotherapy as cleanup, so a bit apprehensive. I feel like I have had a pretty easy ride since the early diagnosis worries were over, so this is the biggest bump since those days. Glad to have this forum to vent on.
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1 hour ago, LilyMir said:
Sorry Rikke it was not straight forward, must be frustrating! Did the surgeon get negative margins? Don't they check them in real time in such cases?
I hear you about private hospitals. I had a little emergency surgery once in a small country and it was a bliss room. The care I got in Canada was top notch technically but quite bad when it came to hospital room. I hear our care is slipping badly now with starved public healthcare system and flight of healthcare workers.
Thanks Lily, no he didn’t mention negative margins. My understanding was that my left adrenal gland tissue was messed up due to RT, so he had to scrape it out rather than making a clean cut - complicated by the various vital organs nearby. As it was keyhole surgery the view isn’t as clear as open either. I have full faith in the surgeon and his abilities so guessing it was the best that can be done.
and yes, we have similar concerns about the NHS (not helped by the lack of health workers due to Brexit)
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Fingers crossed for mum's scan tomorrow 🤞🤞
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Australia even - 11 timezones away from the UK. Mostly it is ok, but occasionally it causes real issues. I think my surgery would have been a lot less complicated had it not been delayed almost two months due to these scan waits. There are lots of reason to love the NHS, but this isn’t one of them. So do praise yourselves lucky!