LilyMir
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Posts posted by LilyMir
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Sorry to hear about the series of misfortune, sounds familiar. I too was diagnosed when a CT for my head came back clear but with an incidental finding of cancer in an upper lobe. As stunned as I was, it actually was visible on another scan years ago but the radiologists completely missed it giving it the chance to grow into one lymph node. Had lobectomy and adjuvant chemo and now on Tagrisso.
I am hearing Tagrisso is being offered as adjuvant for EGFR exon-19 patients even for early stage, so ask you oncologist and consider second opinion if you do not feel 100% confident of the plan following surgery. Lung cancer very often comes back so adjuvants seem quite important (depending on situation of course).
I hear you too about your wife being injured, what timing! My husband had 2 kind of serious health scares since my diagnosis. Life is very strange sometime, both of us youngish. Welcome to the forum and good luck!
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I reckon, just like here in Canada, the images just sit there unread until someone gets to them. The queue is weeks long sometimes.
@catlady91, just in case the delay is from oncology rather than radiology, make sure a copy of your report is always copied to your GP. My oncologist never calls with results even if my appointment with them is weeks away from when results are posted. We are not allowed to read reports until a doctor gives me access. The reason I stay sane is that my GP is so cool he would call me over Christmas to tell me as soon as he receives a copy. Brutal system otherwise.
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Fingers crossed, keep us posted @catlady91. Positive vibes!
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Indeed Tom, there is a big uptick where I live and many people are reporting being sick again. I am getting more careful again though I never unmasked in general but started to do things with some risk like unmasking to swim at a public pool, eating on the side indoors at a (very well ventilated) friends house and downgrading N95 mask from head loops to ear loops. Tightening all that now for the Fall. My husband just had another health scare and we certainly are of the philosophy that masking may at times be socially isolating and occasionally inconvenient but surviving and being as healthy as possible so our little boy is not orphaned is all what matters. Stay safe.
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Thanks for sharing your experience @RJN. I did not know about the chemo component, as the limited info I had read suggested it was just multiple vaccine injections with little side effects for this one but maybe I missed something sinceI was not reading extensively.
I am not sure if the 'doubt casting' was a comment addressed to me since, as a scientist and university Professor, that is something that is the antithesis to my life long knowledge and career. Press releases of a for-profit company on commercial TV station is something one looks deeper into (difference in scale of impact was palpable when I compared 'TV blurb' with their actual published data). Even my oncologist discusses such angles with me when we talk about any new medication or trial. Me wondering about politics of this is not doubt, it is prudence as similar vaccines have been approved and used in multiple other countries for years but I never heard about them on TV, at my cancer centre, or any literature given to me here. Just my 2 cents.
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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.
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Indeed vaccines are one type of immunotherapy. While a drug like Keytruda is part of immune checkpoint inhibitors, vaccines introduce antigens. A nice summary may be here for those needing some info: https://www.cancer.net/navigating-cancer-care/how-cancer-treated/immunotherapy-and-vaccines/what-immunotherapy#:~:text=The different types of immunotherapy,Oncolytic virus therapy
I don’t know if this is hype because the developer was a European company vs a country to which the West is hostile. Lung cancer vaccines existed in Cuba for a long time, e.g. CimaVax-EGF, so it is hard to discern politics from scientific breakthroughs. I need to learn more.
Will update if I get to know more details. Much of the info I saw on this new press release so far is layman level.
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Cuba for long pioneered cancer vaccines but this one comes from France and targets patients with failed first and second line treatments (advanced or relapsed): https://www.euronews.com/next/2023/09/13/new-cancer-vaccine-could-improve-patient-survival-for-some-lung-cancers-study
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Did they tell you how the nodule looks like? It is not good that it grew but it is not a confirmation of cancer, only a biopsy would confirm that, or at least a PET scan can give some idea of cellular type. From your description it seems like slower growth but 40% growth is still significant so they have to confirm what it is soon. My tumour doubled (on CT) in 4 years (radiologist missed it the first time but error was exposed after second scan) but it was an aggressive type of cancer somehow and tumour was in fact much bigger than imaged suggested once my lobe was removed and sent to pathology. The key for curative treatment is early intervention so don't let them dismiss it until it has grown much.
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Hi elki, I am so sorry to hear about your situation, this sucks and it certainly is not fair being sick this young but for the sake of your young family try to hold onto hope that the treatments may actually work despite the scary statistics. The time right after diagnosis is so terrible and it often feels surreal, as if you are watching yourself from above or stuck in a bad dream. The initial shock usually improves once treatment starts. Remember that even those with targetable mutations may not respond well and on the flip side some who were given months to live are still here talking about it years later. Hold onto hope since it is the only way to live with this miserable disease.
Chemo is tough but usually the body manages somehow, tell your doctors about side effects and ask for pain and symptom management specialist to be added to your team (they are much nicer humans than oncologists). Even if chemo fails, there may be many trials you can join so so some research and ask your doctor. Seek a second opinion too if the current team is not proactive.
Have they considered radiation? If not, ask why not. Some here are almost 20 years post diagnosis despite the most dire prognosis so please do not give up too soon. Welcome to this wonderful forum, I am sure some stage 4 survivo s will share their experience with you soon.
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Breaks my heart that younger people are increasingly getting this wretched disease! Hand in there, hopefully they caught it before too much damage occurred. It took around 6 weeks for me to get complete biopsy report and the waiting was so very hard. Your loved ones must be so worried but try to calm them with the knowledge that lung cancer treatments have come a long way, especially over the last 5 years. You won't find this info reflected when you web search, which I am sure your family is doing. All online stats and prognosis info is no longer valid. Stay positive and good luck!
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If your symptoms persist, insist on imaging: Xray as minimum, or consider CT. Blood tests do not detect much and imaging is usually the gold standard. You may be suffering from anxiety and this does not help with vague symptoms but do not ignore persistent symptoms and insist on an investigation if they continue. Try to calm down and stop reading Dr. Google, it is not helpful without a diagnosis first and even then most info online is ridiculously outdated. Good luck!
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The others gave you some good info, I just wanted to say hang in there, you will handle it whatever it is. I was incidentally diagnosed last year and feel your panic, my kiddo was not even 6 at the time. Take deep breaths guys and do not anticipate disaster. Wait for results and deal with them when they come. Even if it is lung cancer, there is so much in way of treatment these days. It may be that this incidental finding is a blessing if the nodules are indeed cancer as chances they can zap it early and deal with it before it becomes a much worse tumour. 1.5mm is tiny. 1.5 cm is a concern but still not that horrible. Breathe and try to calm down until you know more. Lung cancer is not what you read about when you google search it anymore, info online is very outdated so stop reading irrelevant info. Make sure they followup up soon add biopsy if doable. Take care!
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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.
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I am so sorry you have to join us but welcome to this great forum! I have a different type of lung cancer but also was given Cisplatin. I hated it with vengeance as it gave me the most horrible (and serious) side effects and the oncologist promptly changed it to Carboplatin for the rest of the chemo cycles, and also reduced dose. IT was day and night difference for me. I have no idea if these are options for your type of cancer but ask your oncology team and make sure they know exactly how your body is responding; chemo should be hard to kill cancer but we don't want it to kill us too 😅. If you don't complain about side effects they assume all is good and do not work with you on side effects so make sure to tell them everything.
Blood work should be regular and any serious out of range values are usually addressed whether it is by delaying the next chemo session a bit to give your body time to recover or by giving treatments for whatever is out of range.
I hope your oncologist is lung specialist not a generalist, if not, maybe find one.
Also, adding a pain and symptom management doctor is key (in US they may be called palliative care).
Hang in there. Chemo is horrible but it passes. You got this!
- Tom Galli, LouT and tgif i guess
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I agree with Tom, it could be many things. Was the CT with contrast? They ought to have seen large tumors with a CT. I second neck area coverage, I insisted my CT cover the neck (was for brain) and this is how they caught my lung cancer (incidental). PET is gold standard for diagnosis. Extensive blood work is needed to check infections or co-infections even if it was cancer. If your dad deteriorates, seek immediate help and push for earlier scan. 2 weeks is not horrible, but not nice to wait for sure. Best wishes!
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Fingers crossed for mum's scan tomorrow 🤞🤞
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🎉🥳🎈🎊🍾 What wonderful news, time for a little mom and daughter party! Congrats!