The Roy Castle Lung Cancer Foundation

Are you receiving or have you received immunotherapy for non small cell lung cancer (NSCLC) in the last 12 months?

I've had a request from Patient Power for help from UK lung cancer patients who may be eligible to take part in a survey about their experience with their immunotherapy treatments. If you or anyone you know is eligible, please contact Laura directly at laura@patientpower.info if you or they fit the criteria described below:-

"If you’ve received immunotherapy (such as Opdivo, Keytruda or Tecentriq) for your non-small cell lung cancer within the last 12 months (or currently are on treatment) as part of routine care or by taking part in a clinical trial and would like to help other patients by sharing your story, please contact Laura by email at laura@patientpower.info.

We are seeking participants for an interview study consisting of two telephone calls: an informational telephone call to determine interest and eligibility (approximately 20 minutes) and an interview telephone call (approximately 1 hour). Open to residents of the UK; qualified candidates who participate in the interview telephone call will be compensated for their time.

Please note: Tarceva, Giotrif and Iressa are considered targeted therapies; NSCLC patients who have had targeted therapy but have not yet had immunotherapy will not meet inclusion criteria for this study."

4 Replies
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Hi my husband had immunotherapy in last 12 months, he had stage 3a nsclc lung cancer.

The treatment did not work, sadly he is not with us...

But if I can help with this survey I will to help.

1 like
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Thanks, Fifi24. So sorry to hear that he did not respond to treatment and for your loss. Such a cruel condition. I'm sure Laura would appreciate hearing from you so please email her directly and she can respond directly to you. Thanks for being willing to help out - hope you have some support especially at this difficult time of year. take care.

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I'm so sorry for your loss, I have 3a ncslc and just had surgery to remove the mass and 4 small cancerous lymph nodes, do you think I'm looking at death as well, I thought 3 a was fixable thru surgery, I'm so sorry for your loss and I hope I hear from you

Reply

Have you talked through with your clinician or your nurse exactly what stage/status you are at now after treatment? Many patients are living years after surgery and even being maintained in stage iv with targeted therapies and new agents. We're all different and prognosis depends on so many things - like age, fitness, any other conditions, state of any spread of the cancer, response to treatment, and also dependent on different biomarkers/mutations that can also impact on treatment options which is why it's so important to discuss your particular case with your medical team. good luck! My diagnosis only served to make me consider every day as special - none of us know how long we might be on earth for (look at those poor people who went to Manchester arena, or any of the other tragic incidents, I'm sure they didn't know anything about it beforehand) so better for us to appreciate our lives however long or short they may be. best wishes and hope you can manage to enjoy this festive time of year.

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