RJN
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Posts posted by RJN
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Another “complete remission scan” - 9 months post surgery and 5 months after finishing immunotherapy. Summer can’t come soon enough😀
- Tom Galli, tgif i guess and TJM
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Wonderful news. I know how you feel. For a while I was thinking that whatever happens, at least I don’t have to be frugal, as I am unlikely to live to a ripe old age. Odds of that are still low (esp given my treatment induced comorbidities), but not beyond the pale, so now I can’t just blow my pension fund as I had planned 😜😜. But in all seriousness, each NED I see posted makes me jump for joy!
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@TJM Thank you. It isn’t just you. I spoke to my two lung oncologists, and they are saying that lung cancer has changed a lot in the last 5 years, and I can tell that their attitude has changed tremendously even since my diagnosis 2.5 years ago. With immuno and targeted treatments, a better understanding of options for oligometastatic cancer etc they now have so many more strings to their bow. We are still at the Wild West end of things, but results speak for themselves, even if not yet reflected in official statistics!
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There are trials on stage 3, but I think stage 1 people have more immediate and probably better options. As someone who has gone through 2 years of immunotherapy and deeply involved with a forum for immuno-patients, I can testify to the wide range of side effects and uncertainty of outcomes. So while it is an absolute miracle drug for some (including myself) and give many of us hope for a future that wasn’t remotely feasible before, I wouldn’t recommend it to someone with other options. That was the long way of saying that I don’t believe it would be ethical for stage 1 until we know much, much more about why it works for some, but cause harm to others.
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I would tend to side with @edivebuddy here, based on my own experience. I had SBRT to my adrenal gland, which initially appeared to work, but resulted in an aggressive recurrence a year later. Granted, my surgery for the same adrenal gland was much tougher than SBRT and I am only 7 months out, but I would have taken the surgery first had I been given the offer. As a counterweight - the lesions in my lungs and lymph nodes eradicated with a combo of conventional radiation and immunotherapy.
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Hi Laurie,
Google is a beast and you did well for staying away. Survival statistics are no longer relevant to most lung cancer patients as new treatments like immunotherapy, targeted therapies, and combinations of treatments are rewriting the script for many, many patients. I saw my main lung oncologist last week, and we talked about how different his job is now. Two and a half years ago when I was diagnosed, a stage 4 diagnosis was still considered a death sentence, and now they have no way of predicting the outcome. One major development is that oligometastatic LC patients (I.e. with fewer than 5 non-brain metastases) are now considered an entirely different category and highly treatable, with a real chance of remission.
- LouT, Tom Galli, laurie2020 and 1 other
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@Angelina sounds like you have been through the wringer. I can’t help on SCLC or neuropathy, but on the sugar question it is a qualified “no”. I do think that keeping healthy and avoiding too much sugar (and carbs which are converted to sugar) helps you get through cancer treatment easier. However, except in very specific cancer types (not SCLC), sugar does not feed tumours. I really like this article which sets out the evidence to date: https://www.nytimes.com/2023/07/10/well/eat/sugar-cancer.html
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Ahhh, for some reason I was a nervous wreck before my scan results yesterday. Kept thinking it felt like being in a participant in Squid Game, where each new hurdle is potentially lethal. I don’t normally suffer from scanciety, but it is my first result of immunotherapy and 7 months since my adrenalectomy, so felt like relatively big risk. But my smiling oncologist reassured me before we even reached the room that I was good, and right now classified as having a complete metabolic response. I asked if it was fair to assume that this meant the surgeon had got everything (he wasn’t sure at the time and there were positive margins), and he agreed that if there was still something left it would have grown by now. So another 3 months of normal life!
- tgif i guess, Scruboak, JuneK and 7 others
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I would absolutely go for the biopsy. It’s really not a biggie and it will get you answers sooner. We are all different, but most of us will rather have answers. Here in the UK we are constantly having to wait for tests and results, so I would count myself lucky to have the opportunity for some quick answers. Fingers crossed for you!
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Hi Sally,
Good for you standing your ground. For my own case, I feel like I am getting special treatment for being young(ish) - I was diagnosed at 49. But on the reverse, it seems to me that older patients do get less attention. I am battling with this for my mum - not cancer-related, but she pretty much get sent home from doctors with “don’t forget to stay hydrated” for every ailment, no matter how severe. It is really positive that you have a radiation oncologist that you rate, as he can help you get a grounding with a new team.
Go for it, Rikke
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Had my second PET scan results post surgery this week. Nothing growing or metastasised, only “persistent diffuse low-grade tracer activity max 2.2, likely post treatment changes”, and most importantly “no focal tracer avid lesion at resection bed”. My oncologists are delighted as this is as close to NED as I will get, given all the treatment I have been through (I.e. there will always be a bit of inflammation etc here and there, even if not malignant).
On top of that, my immuno-induced (?) T2 diabetes seem to be in remission after I made some diet and exercise changes, and my steroid regimen is giving me no issues
So just over two years of immunotherapy, radiotherapy and surgery, I will now have several months with no blood tests, hospital appointments etc - all in good health and shape. I am acutely aware that this can be temporary, but rushing off for work in Indonesia, then Christmas in Denmark, and a week of sun and sand in Antigua over New Year’s.
Who’d have thought, eh? X
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Radiotherapy is a good bet indeed - my lung tumours and lymph nodes are all dead now, so crossing my fingers for you.
I am doing pretty great - no issues with my steroids and other ailments and slowly getting back into normal shape and life.
keep us in the loop please!
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@GBJ - yes, adjuvant radiotherapy in combination with systemic treatments (immuno, chemo or targeted) is fast becoming the gold standard for stage four cancers with limited metastases (oligometastatic). Personally I had conventional to my lung and lymph nodes, and SABR to my adrenal metastasis. Lots of trials are ongoing, with stellar results. I have quite a lot of cancer mates who had this combo and all are faring well a few years in. So worth asking.
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Hi GBJ,
Having recently experienced a combo of NED of original tumours but growing metastases I am a poster child for the weird ways of immunotherapy. Even the top oncology team here don’t have a solid scientific explanation for this type of thing. Pseudoprogression isn’t super common, but it does happen, so fingers crossed that is all.
Even with the uncertainty raised by your friend, I’d still go ahead with the molecular testing if you are in a position to. In my various immuno groups, there are a fair few people who have moved on to targeted therapies and have done well on them, so if it is covered by insurance it is worth looking into as a next step.
Take care, Rikke -
@Lmodge - Karen is right that targeted treatments and immuno-based vaccines are muddling the picture, but for standard immunotherapies such as Pembrolizimab you are correct. In most countries outside the US, 2 years is the limit for NSCLC for immunotherapy. I believe in the US it’s a bit more mixed due to permitted off-label use. The argument is partially financial and partly that the balance between severe side effects and effectiveness after two years is less than clear. Personally, I am finishing my immunotherapy after two years in November, and my oncologists believe that it is likely that it will keep the cancer at bay at least for a while, but I will be put on KRAS-inhibitors or chemo if there is a recurrence.
It will be easiest for you to find your target group in one of the dedicated immuno groups on FB such as Immunotherapy Support Group. Plenty of people there fitting the profile.
I seem to be struggling accepting good news!
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I came across a column a few days ago from a self-proscribed hypochondriac. Turns out it was someone with a history of hodgkin’s. I was thinking that it really is a side-effects of cancer recovery. Even if all goes to plan, you will always be extra wary of any physical symptoms. I get a bit worried if I have the tiniest cough. Just spoke to someone who is convinced her dodgy hip is bone metastasis, rather than the logical conclusion that carrying around her toddler grandkids might be to blame. But better safe than sorry - so good to get it checked. And when that is done, celebrate your clear scan again!