I've written before about my wife's diagnosis which was T3 N3 M1b Adenocarcinoma of the left upper lobe of lung. Since then she's had a guided needle biopsy which has provided the information all previous tests and scans had failed to uncover. As a result the diagnosis reads as before but with the following additions:
EGFRm-/ALKt-/Ros1-/PDL1 90%
All these technical abbreviations are lost on me as are other things in her latest diagnosis letter like 'mediastinal nodes' and 'pulmonary nodules'
I would appreciate if if someone could give a lay explanation of the above.
Regarding treatment she is being put on a course of Pembrolizumab Immunotherapy every six weeks, starting this Friday. This is exactly three months and one day since urgent referral so is well overdue but she is relieved that at last there will be some treatment.
The consultant's letter says the intent of the treatment is "Palliative, high chance of durable response." Now I don't expect anything absolutely specific but is there any kind of ballpark figure for what "high chance"means in percentage terms and "durable response" in time.
I'd add that this appears - on the face of it - to be the first piece of positive news in the past three months.
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scotleag
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It can be confusing the terminology and the medical staff do not always have time to explain them in detail.
EGFRm-/ALKt-/Ros1-/PDL1 90%
EGFR , ALK and Ros1 are all genetic markers which they look for in a biopsy, which some respond to treatments known as Targeted therapies.
As they all have a minus (-) mark beside them, this means they are absent or negative, hence your wife would not be eligible for these therapies.
PD-L1 is a protein that may be present from biopsy, this protein camouflages the cancer cell into tricking the immune system that it is not abnormal, hence it the immune system does not attack it. The higher percentage the PD-L1 is, the increased chance of a good response to the immunotherapy, it is encouraging that your wife has a percentage of >90
The immunotherapy exposes this protein on the cancer cell, therefore the immune system attacks and destroys the cancer cells.
The Mediastinal nodes are lymph nodes that are situated between the two lungs and pulmonary nodules are abnormal growths that grow in the lungs, many are benign and can be very small. Anyone with a pulmonary nodule is monitored 3-6 monthly for a few years, many are too small to biopsy, when they get to 6mm-10mm then more careful observation or biopsy may be attempted at the 10mm.
The 'High chance' that is mentioned on the letter may be to do with the high percentage of her PD-L1, some have it under 50% and others over 50%. A durable response time, can be 2-3 times better than the average response rate.
You could also discuss these with the lung cancer nurse specialist. Hope this all helps and 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
Hi scotleag Good to hear you and your wife are moving forwards. I think you are right to consider the news positive.
To add to the Roy Castle response, the PDL-1 protein result can be anywhere between 0% and a hundred%, and it is the percentage of cells in the sample with this protein on them. The immunotherapy uses this protein so to have 90% will hopefully lead to a good response.
You are right that no-one can give you any specific answers to the prognosis question, nt least because these drugs are very new still. I've spent a long time trawling through the trial data to find out what I can. As your wife has 90% PDL1, the likelihood that she will respond is much higher. And what does 'durable' mean? There are certainly survivors who are now 5 years out from diagnosis after treatment with immuntheray. One of the studies showed that of people with high PDL1 levels who had pembro for 2 years, almost 80% of them survived to 5 years (at which point the data collection stopped.
My husband is nw 18 months int immuntheray and its working really well fr him with very few side effects.
It can all feel so overwhelming but we don't need to be scientists/medics, do always ask the medics/nurses if they don't explain - they are supposed to support patients not baffle them with jargon. Their clinical letters to one another, whether radiography to oncologist or hospital medic to GP are full of their own 'shorthand' or specialist terms which is why having somebody explain them is important. Googling can bring its own form of terror.... so much on the internet is outdated, inaccurate and from other countries.
Roy Castle lung cancer foundation website has information online on every aspect of lung cancer - from early investigations and different types of tests, types of treatments, booklets to download on specific modes of treatment like surgery, chemotherapy, radiotherapy, immunotherapy, targeted agents - other booklets for other types, info on eating well, travelling, working etc... all in 'lay terms'.
Their information is regularly updated and reviewed by a patient panel (which I'm on) for 'readability' and has helpful diagrams, pictures, photos as well. Patient reps often make suggestions. hints and tips from a practical perspective into these booklets about things that help when undergoing different treatments or aspects that matter beyond the clinical!
I was diagnosed in January 2011, had open surgery and half my lung removed but the majority of UK patients are diagnosed too late for surgery although now the majority of have keyhole surgery.
'Palliative' relates to the intent of treatment - and 'treatable not curable' is the norm for many patients so don't assume that palliative means imminent end of life. Too often the way words are used clinically do not fit the dictionary or google definitions which is why we then become more anxious.
I became involved in lung cancer research end 2013 and every treatment, term, etc has changed since then - I've met patients who despite a 'treatable not curable' or 'stage iv' diagnosis were able to have new treatments on clinical trials now considered 'old hat' as better ones have come along.
New ones are developed all the time which is another reason medics find it hard to say and new combinations, timings etc often improve current outcomes so once such evidence is found, then treatment schedules might be changed by the policy makers.
Treatments are hard to predict who will respond favourably as this depends on many factors and if using the patient's own immune system
nodules are inside the lung like moles on the outside of the skin - millions of people have them but very few develop into anything serious....I think all the other points in your post have been covered.
I've worked with patients who survived decades - even those who didn't have surgery, others a few years, and these combination treatments have really changed the outcome and quality of life for so many. Many are travelling, active, working but treatments can be harsh so keeping as fit as possible in terms of sleep, diet, activity etc are important.
People react differently with some having side effects and others not.... I've always tried to go with 'what is,' rather than worrying about the 'what if'.
For now, I read your description with hope - take it..... and support one another -
I shockingly lost my older sister in an accident on Friday - no warning, no time to say all those unsaid things - use this time you have despite its challenges to be there for one another...
your wife should have a cancer clinical nurse specialist (lung nurse) who may be able to spend time with you if the consultant can't to explain this - write down your questions, record the answers and also use the helpline, online group sessions or information to help fill in gaps too.. thinking of you...
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