RJN
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Posts posted by RJN
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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.
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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
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Dear Izzy and family,
My condolences to you all. I am very sad to hear this - Justin was dealt a difficult hand, and yet had the heart to support others the best he could. We joined the battle and this forum at the same time, so he has been part of my journey through this strange path from the beginning. He will indeed be missed, Rikke xxx
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@Izzy @Justin1970 I understand if this isn’t the time to post online, but I just wanted to send all my warmest wishes to you and the family. Not a day goes by when I don’t think of you and hope for the best - and I am sure the same goes for many of us here.
love, Rikke
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Thanks Karen, yes - getting to a point where surgery is even recommended is actually great news. When I was first diagnosed, the medical team didn’t think there was any point since the cancer had spread to my lymph nodes. So yay to that!
I am still awaiting an appointment with the surgeon, so don’t know anything yet. From what I can gather, I shouldn’t need medication, at least in the medium/long term, although some cortisol might be required while the other adrenal gland learns to do the job.
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Thanks, Pam, Tom and Lou. Yes, I recognise that any metabolic activity is bad, but I’ll take any slight positives, and not having active cancer in my lung and lymph nodes (all of which were quite sizeable) feels like I have come a long, long way from where I was 18 months ago. Now I just cross my fingers that the surgeons will agree that they need to whip this adrenal thing out. Because I already had radiotherapy to the adrenal they won’t do it again. I never had surgery ever in my life, and never even spent a night in a hospital, so it is a bit frightening, but even if it temporary, it would be marvellous to get to no detectable cancer.
Pam - fingers crossed for your scan!
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Hello all,
After about a year of stable disease, it appeared that my adrenal metastasis had grown from 11mm to 16mm. So I had my PET scan results today. The bad news is that there is metabolic activity, so I am being referred to surgery for an adrenalectomy. The good news is that there is no other signs of disease. My main tumour and lymph nodes show no activity, so whatever is left is dead tumour tissue. This is obviously a relief. From what I can gather, the prognosis for removal of an isolated adrenal met is very positive in terms of long term survival.
Two questions: has anyone here had an adrenalectomy? And they said that adrenal SUV was 5.5, compared to 11.6 when I was first diagnosed. I assume this means that the met has low activity and not very aggressive - is that correct?
Thanks as always for any advice! Rikke
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Hi Justin,
I hope you are doing ok. I think this is definitely the right time to seek a a second opinion. It certainly cannot hurt. I looked up how to go about this under the NHS, and seems you need to get either your GP or current consultant to refer you. Perhaps @catlady91 can advise? Re medical trials, I spoke to the research team ant UCLH and they don’t currently have any relevant trials, as all of them will exclude recent brain metastises, so I wouldn’t waste precious time on this. However, even in the short span since we were diagnosed, there have been so many new treatments approved, so another oncologist might have more ideas on how to proceed.
We are all with you!
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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
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Hi Justin,
Can’t blame you for feeling anxious and out of sorts. Sounds to me like your medical team has left you in a weird limbo.
I think LilyMir has a point, and you/your family could try to ask about trials and/or contact for example the research team at UCLH to see if there is anything going? There are so many trials in progress, including a fair few for heavily treated LC patients. I have an appointment on Monday and could ask for you if you’d like?
Apart from that, hope you are getting through this rough time ok. Rikke
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Oh Justin,
I am really terribly sorry to hear this. You’ve had such a hard time of it, and I would have hoped you caught a break. But as Lily says, nothing is certain with this disease, and it is great to hear that you have the will to go out and enjoy your family.
We are here for you and wishing you all the best, Rikke
- Justin1970, Tom Galli and LouT
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So, my latest scan had a slightly suspicious finding that my adrenal gland seemed to have grown from 1.1cm to 1.6cm. So not nothing, but also close to margin of error according to the oncologist. But he was clearly concerned and would take it up at next conference to review with radiologist and clinical team. I had SABR to the adrenal a year ago, but at the time the metastasis was so small that the team actually struggled to plan the treatment. So there is a possibility they just didn’t get it. My oncologists plan is (if the conference agrees), is to send me to a PET and then consider either surgery or reblasting with SABR.
I am not panicking but of course deflated. I could tell that both my oncologists (medical and clinical) were surprised and disappointed, as I have been a success story so far, and we had all hoped that I would be among the few who could just coast along.Mainly just an update, but if you have any thoughts or advice I would be grateful.
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Hi Jill,
Immunotherapy does throw up a bunch of weird side effects. For me, it has been a case of exacerbating all my old sports injuries. Arthritis type issues and joint inflammatory responses are quite common. I would recommend that you join a couple of immuno specific groups, as it is helpful to get feedback from others going through this wonderful but sometimes confusing and annoying treatment. I personally am in Keytruda and I and Immunotherapy Support Grouo on Facebook. They have been very helpful.
all the best, Rikke
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Lily - I know many women who have become menopausal after chemo, even at very young ages, so it wouldn’t be surprising.
For men, the picture is less clear and there is very little robust scientific evidence. However, it is well-establishment that older men can suffer from hormonal imbalances, and given the battering you have had, Justin, I think it is worth getting checked out.
I really only started to feel normal/not sick again when my sleep became better, so as you say, explore all options.- LilyMir, LouT and Justin1970
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Sorry, I was just thinking an endocrinologist might be the right referral….
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Hi Justin/Lily,
Just on the zopiclone - I had some and they did nothing whatsoever for me except making me sluggish and giving me a bad taste in my mouth. My sleep patterns were similar to what you describe, being asleep for half an hour at a time throughout the night, and feeling like I was suffering from constant jet lag.
In my case, my sleep got better and the zopiclone started again working after I started taking HRT (hormone replacement therapy). Now I know this is of no use whatsoever to you, Justin, but I can’t help thinking that with all the treatment you have gone through your hormones might be out of whack, and perhaps it is worth asking to speak to a haemotologist?
Just a thought - I just feel that with us there is so much going on with our bodies that it’s worth sharing stuff that has worked, even if far fetched….
I hope you get a grand new look, Justin.
Rikke x
- Justin1970 and LilyMir
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Hi Justin,
It is a rough journey you are going through Justin. Sending you all the best of thoughts, and hoping the treatment itself won’t be too tough and will bring you back on track. Cheers, Rikke
- LouT and Justin1970
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Did you have radiotherapy? Ground glass is typical of radiotherapy induced damage and is often benign. So try not to worry until you talk to medical team.
Honest question: here in the UK, our scan reports are never released until after we have seen our medical team. Although it can be an annoying wait, I am getting more and more convinced that it is the right way to go, to save a lot of agony over unclear results. What do you Americans think?
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Oh, that is wonderful! So happy to hear this. You deserve some good news and a break!
- Justin1970, Izzy and LouT
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Woke up this morning and wondered how you are, Justin. Crossing fingers and toes for your scan results today!
- Izzy, LouT and Justin1970
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Pet Scan Results and Treatment Plan
in NSCLC GROUP
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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