beesgood in reply to RoyCastleHelpline2 months ago

Hi

thanks for the reply. I've found the Roy Castle info very good - nicely picthed between being detailed and not too technical. Thank you. You'll also be glad (I hope) to know that the Lung nurse gave me a copy of your immunotherapy doc to explain likely treatments

If you develop any info on Adenosquamous lung cancer I'd and I guess a few others would be very grateful - it's worrying as a patient that you can't find any reliable UK info on your diagnosis.

RoyCastleHelplinePartner in reply to beesgood2 months ago

Thank you for the kind feedback and I will certainly pass it on. It is important to address all kinds of lung cancer and it is something that we are passionate about and continue to work on.

Hope your treatment goes well and please do not hesitate to contact us if you would like to discuss anything further.

Kind regards

The Roy Castle Support Team

lungcancerhelp@roycastle.org

0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

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beesgood in reply to Sparkles062 months ago

Hi - thanks for replying and sorry we're here - but onwards and upwards... I can share what I know if it helps...And like you I meet with my oncologist next week too. so shoudl get more info next week.

They gave me my PD-L1 results as part of my biopsy (I had via bronchoscopy ) that confirmed the cancer type. Apparently the tumor is predominantly adenocarcinoma with some squamous features and I'm waiting for the molecular markers to come back to see if I have any targetable mutations.

As for knowing PD-L1 levels ... I had done some research on PD-L1 so it was the 2nd question I had for the consultant when they gave me my diagnosis, but you could possibly ask your Lung nurse if she could tell you your PD-L1 results before your meeting if they have them as if you have had a biopsy they may well have that info. As you've probably figured out PD-L1 levels can effect treatment pathways so it may be useful to do some research prior to your meeting next week.

Not sure what type of person you are and whether you like to research lots of info, but for me I sorta need to know lots of info so I can get my head around it and make the most of the (very) short time you get with the medical team to ask questions. I've looked at the NICE guidelines for lung cancer treatments (can find easily via Google) that sort of spell out the different treatment pathways and drugs etc that the oncology team may consider for you depending on your diagnosis, PD-L1 levels and whether there are any targeted mutations... Rather unhelpfully these don't cover Adenosquamous specifically so I'm guessing they will follow the Adenocarcinoma (NSC) type route - but I could be wildly wrong!

I've read on non UK based sites a bit about the diagnosis, but not sure how that translates to the UK view and I've also heard that this diagnosis is becoming more common as testing is enhanced.

I do hope your meeting goes well next week - I'll update on here what the oncologist says next week as there's so little info about this...

Sparkles06 in reply to beesgood2 months ago

Thanks for your very upbeat response! It would be great if you could share any information you have on our seemingly uncommon type of lung cancer although I too have read that it is becoming more common these days.

Yes, I do quite a lot of research myself although my daughter does far more. It does help sometimes to have as much information about the condition as possible, but sometimes I also feel very overwhelmed by it all. That’s probably quite a common reaction though after such a devastating diagnosis.

I had an EBUS procedure on 14 February so I’ve given my LC nurse a call to ask about my PD-L1 levels. I’ll do as much research as I can before next Thursday - forewarned is forearmed!

Unfortunately I also have pleural effusion - are you affected by this? I’ve had it aspirated three times already but I was advised to think about a more permanent, or at least a more long term solution. I was under the impression that whatever treatment I have will reduce the amount of fluid anyway, hence no need for any extra procedures but I was told that this doesn’t always happen and I would need to tackle the PF separately. Obviously the risk of infection increases every time the fluid is drained, so longer term options are a catheter which will enable me to drain it myself or pleurodesis treatment (chest drain and talc) - neither of which I’m keen to have. However, I guess this is something else I will need to ask the oncologist about - the list of questions is getting longer and longer!

I hope your meeting goes well too - perhaps we can compare notes afterwards. Onwards and upwards indeed!

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beesgood in reply to Sparkles062 months ago

hi sorry to hear about your plura effusion. I hope that doesn’t complicate things too much for you. When they did my scan they found some emphysema so have slowly be getting my head around that as well.

But I’m determined to fight this as much as possible so am busy researching foods and supplements atm and trying to develop breathing, relaxation techniques that will hopefully help my treatment…

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beesgood in reply to Sparkles062 months ago

Hi Sparkles06

Hope you are doing well

I'm just back from the Oncologist. They said Adenosquamous is a fairly common diagnosis these days - but so much depends on the biopsy and where they were able to get a sample from. They sort of implied that if you were to sample the whole tumour many tunours would be adenosquamous)

My treatment will basically follow the Adnocarcinoma route since that is the dominant subtype in my case and since i have high PD-L1 levels I think they will start me on the immunotherpay drug pembrolizumab (keytruda) pretty soon. For me its the same treatment regardless of type of NSLC I have. They are still waiting on any molecular markers to come back so that may change things... hope that help

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beesgood in reply to Sparkles062 months ago

Hi Sparkles..... I've read good things about that drug combo so will send you some positive thoughts over the internet... and i'm also on the 2-3 weeks rough start time as well... hurry up and wait.... and have been told i need to go and sign a whole bunch of consent forms about the treatment and possible side effects - cant wait 😂 it sounds like a sensible plan to get the plurodesis sorted first so you're in the best possible shape for treatment so hope that goes well for you...Wishing you lots of good thoughts about your upcoming treatments - we've got this!

Sparkles06 in reply to beesgood2 months ago

Huge thanks for your positive thoughts, they really do help. Sending the same back to you ☺️ Yes, signing all those forms is on the cards for me too, plus a load of blood tests and another CT scan - I have scanxiety already! Not looking forward to the pleurodesis but I’ll get through it, and all the other treatments to come - we both will! All the best ☺️

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