Hi all, would really appreciate any thoughts , insight or experiences.
My grandad was diagnosed with stage 4 lung cancer June 2023, he is 77 but prior to diagnosis was very fit and well, performance status zero. His treatment plan was to have Cisplatin and Pemetrexed (chemotherapy) and Pembrolizumab (Immunotherapy).
He tolerated a number of cycles but then got a couple of infections at once and was very poorly. Upon discharge from hospital he was told they would reduce the strength of the chemotherapy to see if he could tolerate this better. However, at his appointment they said they had stopped the chemotherapy and said he could only have immunology.
CT scan in September 2023 - disease was stable
CT scan in December 2023 - disease had responded to treatment
Within the last few weeks he has appeared more fatigued but has also been doing more such as going out all day etc, which he could not do on chemo.
CT scan on the 27th March 2024, I requested the report and it states increase in size and number of lung nodules, subtle emphysematous changes and there is evidence of steady but definite disease progression.
We are waiting to see the consultant in 2 weeks time. We are scared they will pull treatment options altogether or be less likely to support due to his age, as we have had none stop comments like "at least he has had a good life and nearly 80".
I would appreciate any advice / support on other treatment options, what has worked for others or any other places we could get a second opinion or look into anything else?
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Sorry to hear about your dad and understandably distressing for you all not knowing what is happening next.
Immunotherapy usually only continues if there is a response to the treatment, if the cancer does not respond to it then they may look at alternative treatment options. This may also depend on how the person is in their current health.
Your dad is entitled to a second opinion, this can be either through the GP or the oncologist and should not affect his care. You may find this link from Cancer Research UK of interest : cancerresearchuk.org/about-....
This link is from the National Institute for Health and Care Excellence, it is a flow chart of the different types of lung cancer and the recommended treatment pathway within England and Wales:nice.org.uk/guidance/ng122/...
All doctors go by this legal guidance framework and it may help for you to see what treatment options may be next for your dad.
You could ask if there are any clinical trials available if your dad would be interested in this, which should be considered carefully the staging and type of trial.
If you would like to discuss anything you can call our ask the nurse free phone number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, alternatively you can email us at lungcancerhelp@roycastle.org
I was diagnosed with stage 4 non small cell lung cancer in May 2022.I was started on Tagrisso the following month. So far last scan showed no more progression of the cancer.
I can understand your worry and concern. Treatments are usually determined on clinical response and patient fitness rather than age and some like immunotherapy have a finite treatment period even if patients respond well. I've seen posters at conferences and known surgeons and oncologists who have treated patients in their 80s and 90s. Write down your questions and if you're at the appointment, ask the question about your concern about his age as his clinical team will be acting on his response as a patient rather than any pre-written rule that cuts off at certain ages as you fear.
Immunotherapy has been a good treatment for many and for some has replaced chemotherapy as it did for many in the pandemic when they wanted to reduce patients' exposure to hospitals so having immunotherapy every 6 weeks and double the dose seemed to work for many. This booklet abut immunotherapy may help explain further as it's not an inferior treatment - indeed many wish they could be eligible clinically for this - lung cancer treatments are highly personal and not decided on healthcare budgets or any of the other myths that people might have heard..... hope you and he get some answers to reassure you soon. It sounds really positive to me that he's going out and doing things he used to enjoy.... so hope this keeps up.... thinking of you and your family as you try and navigate what is a very complex treatment experience... good luck. roycastle.org/app/uploads/2...
You can always ask the clinician if it's ok to record the meeting - too often we forget what was said - especially as patients - our brains tend to go into a fog when the word cancer is mentioned. One question to ask is 'if we have any further questions when we get home, who should be contact and how? " good luck.
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