Small cell lung cancer : Is there... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Small cell lung cancer

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Is there anyone with stage 4 small cell who would like a chat, it's very lonely place on your own, I'm currently on 2nd line Topotecan is there anyone else on this treatment many thanks for reading and best wishes to everyone

12 Replies

Dear Teddysmates

Welcome to the forum, all be it under your diagnosis of lung cancer and very sorry to hear that. I am sure you will find plenty of support and encouragement from others on the forum.

It can be quite isolating having cancer, even though there may be plenty support around, it is good to connect with others who are going through the same.

I have placed a few links below that may be useful for you:

This is our link to small cell lung cancer booklet: roycastle.org/app/uploads/2...

We offer a one off grant of up to £150 for anyone with lung cancer and you can apply for this through this link: roycastle.org/patient-grant...

We have a range of support services, from one to one support to online support groups through zoom , if you are interested in any of these you can register through this link: roycastle.org/help-and-supp... , alternatively you can email our support co-ordinator at jessica.crowe@roycastle.org

If there is anything else you would like to discuss you can email ask the nurse at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Kind regards

The Roy Castle Support Team

Hello teddysmates I'm sorry too hear that you have that my dad is 84 and as the same SCLC dads also stage 4 take care 💜

So sorry to hear about the SCLC. I was diagnosed with it (stage 4) in March 2020 and opted against chemo as I was told it would prolong my life by only about 3 months. And visits to the hospital would have probably given me Covid anyway. I was told to expect 6-9 months - and I'm still here 2 years later so there's hope yet. Just keep going and don't overwork yourself.

Hello TeddysmateI have had cancers removed from lung (right) and radiotherapy on left lung cancer. Have now got cancer in my spine for which I have had further radiotherapy. This is all over a two and a half year period, I think. Time just slips by so quickly, don't you feel?

I would be more than happy to chat about our experiences, feelings and anything else that we may find useful to share. I look forward to hearing from you, if you would like to chat.

Hi Teddy's ates I'm on here if you ever want to chat. I was diagnosed with small cell lung cancer terminal in Feb 21 I had a collapsed lung and 7cm tumour on the lung which also spread to my esphogus and did not spread anyway else. I had 5 rounds of chemotherapy and two days taking the capuseles and 12 days radiotherapy. Finished my treatment last June on my 60th birthday I had a few side effects which I managed I really think you need to stay positive take one day at a time and do what you can each day. I've just been on a two week holiday abroad and it totally lifted my spirits I hope you have the mind and strength to rget through this hard time best of luck. Xx

Hi sixtygirl thank you for getting back to me, be good to have a chat with you, is there a friend request on here sorry don't know how to do it thanks x Cathy

Hi Teddy mates how are things with you hope everything is going as it should I've had a bad water infection this two weeks but now on the mend thankfully I think you go to the top of my page for friend request I'm not sure hope it is correct hope to hear from you soon xx

Hi SixtygirlI am on my 3rd treatment of Topotecan and I'm struggling with the side effects, strong bouts of the runs, bad head pain just hoping that is a headache and it's not gone to my brain, it is on the move again and growing just hope this treatment will hold it back, scans on Monday, how are you doing sorry to read you had a water infection speak soon x

Hi Teddy mates sorry your not feeling too good I started getting headaches and they done head scan and everything was fine so I don't worry when I have one now hope your scan goes well on Monday ill be thinking of you water infection now gone then on Tuesday came down with covid. It's never ending so in isolated at the moment but we are made of hard stuff. You take care my friend x

Hi Teddy,

My husband, 59 also has Extensive SCLC. He was dx 3/1/21. We are in the US. He has had Carboplatin/Etoposide with Atezolizumab and then Topotecan. Last treatment was radiation to chest and abdomen. Wishing you many healthy days.

Hi mate, i am newcomer on the site, i too was recently diagnosed T4 N1 MO andenocarcinoma in left lung (whatever that means) i completed a 4 week course of Radiotherapy a month , this was the only option available to me as i have kidney problems.Like yourself i thought i was in good health, apart from a slight wheeze and small dry cough (two years Dr's told me it was due to smoking and hayfever) During first lockdown my wife encouraged me to go to doctors after seeing the many adverts on tv about lung cancer. I did and they sent me for a chest X-ray a year ago, which for some strange reason came back giving me an all clear?????

It was only when i met a student doctor at my surgery that he read through all my notes and immediately sent me for a ct scan, which diagnosed the cancer straight away.

so it is pretty sudden and overwhelming for me too.

Here to help if i can my friend.

The LiveLung Foundation in the US has a sclc specific group which will meet by Zoom starting in June. It’s at 6:30 pm our time so 11:30pm your time. If you wish to stay awake that late:—————————————

The Virtual Small Cell group is exclusively for the Small Cell Lung Cancer (SCLC) community. Facilitated by long-time SCLC survivor, Montessa Lee, meetings will meet monthly and will feature expert SCLC speakers, fellowship, and a $15 Grubhub credit. Meeting dates and times will vary each month. The first meeting will be held on Tuesday, June 21st at 6:30 pm ET. This program is supported by a grant from the Lung Ambition Alliance.

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