The Roy Castle Lung Cancer Foundation
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Pembrolizumab Immunotherapy

I've just had my second treatment with Pembrolizumab and the side effects of severe headaches that I suffered after the first treatment were happily absent.

This is a new turn in the route; a year ago I was diagnosed with NSCLC then a week after with Bowel cancer. The consensus was that they were both primaries which put the Multi-Disciplinary Teams in a dilemma on what to do first but the final decision was a right hemi-colectomy at the end of January and a right upper lobectomy at the end of March.

The colon pathology gave a completely result but the lung result moved from the original T1bN0M0 to a T2aN1M0 result in April. The move to N1 suggested accepting four cycles of adjuvent Cisplatin/Vinorelbin chemo which was tolerable despite being accompanied by attacks of neuropathic pain and Pulmonary Embolism in the middle of it, both of which were tamed.

I was so optimistic by the end of the chemo that I took it as given that it had worked and didn't chase my final scan for some weeks. Imagine my surprise at my first onco appointment it transpired that secondaries had grown on the adrenal gland and a further PET scan showed up an active mediastinal node. This means that I am now categorised as Stage 4, a state I had hoped to avoid, for now at least.

This was a bit of a blow but it turned out that with NSCLC, chemo failure and a positive gene test for PD-L1 (with negative for ALK and CGFR), I became eligible for the newly approved Pembrolizumab and now have new hope!

If the continuing treatment is as tolerable as this second treatment then my hope is enhanced. Because this treatment is so new in this country I am very interested in hearing about anybody's experiences and I will post my from time to time.

Good luck to everyone on this path

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I can only comment on the good results I have seen shown at conferences for these type of responses to pembro and also discussed on lung cancer committees/boards to which I belong. There are some patients surviving and responding nicely to these treatments and other targeted therapies and if your body/system develops resistance, have met other patients for whom such treatments did just that, in the meantime, newer treatments and greater knowledge had been developed enabling them to progress to even newer agents. There are many patients on this journey almost being managed like a chronic condition with drugs/treatments changed as they might be for other long term conditions. wishing you good luck on your new treatment regime - must have been a shock but thank goodness, you have been identified as one who might benefit from this option. best wishes.

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Many thanks - all information is useful and gratefully received. In fact the hospital clinical staff are very interested in pembrolizumab as it's so new!

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Hi, glad to finally find someone that is going through the same treatment as me. I've had 3 lots so far, I was told that the side effects were less than chemo but in my case I'm finding it harder - for the last 7 weeks I have been continually tired, falling asleep as the drop of a hat, and being sick - mostly this is just mucus but nevertheless the feelings are the same, not nice.

I am finding that across the top of my shoulders hurts all the time so am still on pain killers, they have now taken me off morphine and given me an alternative as morphine was just spacing me out - but all the pain killers do not take the pain away so we are still on trial and error to find the right dose for me. I have been so lifeless that my poor partner is doing everything, I even find it wears me out just having a shower.

It would be nice to know if this treatment is doing anything but they are saying that won't scan till I've had at least 4-6 treatments.

Hope all goes well for you, I'll keep an eye on your progress.

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