Well thought it was time to update on my strange year of Lung Cancer. What a year it has been I was diagnosed 1year today and thank god I was diagnosed and treated with immunotherapy or I wouldn't be hear today.
I started on Pembrolizumab 3 weekly with little side effects. I have put on a few stone in weight and very tired in the afternoon. Most of the time I stayed positive but like any off us there was black days as well. But I knew I wanted to beat this and remained positive. Into the 6th cycle I developed fluid around my heart and in my lungs. Sorted by a short stay in hospital and a drain. Then came the fantastic CT scan results scan 8 no visible cancer in the lymph nodes and none in the sternum. The lung tumour has shrunk a little and is inactive due to immunotherapy managing it. Was so happy. Now been moved to Pembro every 6 weeks. Sadly after this first double dose they are ?? toxic immunotherapy colitis. So treatment on hold and on strong steroids Prednisolone to sort me out waiting for camera test.I remain optimistic and with my families support I continue to go forward and remain positive.
I wish you all with any kind of cancer good health and be positive on your journey. Love to you all xxx
Written by
Ollie13
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Wishing you best of good fortune as they stabilize & can return to treatment. Your optimistic outlook is exemplary & uplifts those of us who more readily become crestfallen from giving in to negative thinking.
Hi Ollie sorry to here that,I think you'll make it. I know it's been a year and that seems a long time. I had 3a today it's been 7 year survivor. I'm so hoping everything goes ok. I'll be thinking of you. Hope and keep fighting and don't give up
Great news on your positive results so far!! So sorry to hear about the reaction following 6 weekly infusion. Have to say not heard of people moving to 6 weekly before. I assume this would be double dosage and maybe that is just too much in one go? Whilst my clinic appointments are now 6 weekly my treatment remains 3 weekly and I’m also at one year stage.
Positive thoughts, stay strong. I hope the steroids resolve this for you very soon and you can continue your treatment. Your positive outlook will get you through!! x
well done and thanks for sharing your story. it can seem surreal and awful at times. I was stage 2b/3a and 8+ year survivor. best wishes for a continued recovery.
I'm getting my second 3 weekly treatment on Friday.
I did read about the 400ml 6 week treatments, but think I'd prefer to stay with 200ml x3 weekly ...and particularly after you mention colitis. I had psoriasis flare up again after my first dose, but can cope with it.
I've been in remission with colitis for almost 3 years now, and have no wish to have it return (not least because of my painful reaction to steroids!) so I prefer the 3 weekly treatments.
Seeing the progress you've made, I feel more optimistic.
Hi MacColl good luck with your treatment. I also had a flare up with my psoriasis but the oncologist nurse got me to see a dermatologist quickly and I got lots of new ointments etc. Regarding the treatment 6 weekly it would appear to be working on others but I will wait to see what happens after I get this problem sorted. This immunotherapy is still in the trials and strange things are cropping up.
Good luck stay strong and positive my thoughts are with you on this journey. Let us know how things go as I personally like to read and it helps me feel I am not alone. xx
I got psoriasis after a really bad experience at a hospital years ago. It finally calmed to almost nothing for many years, but flared up 40 years later when I got colitis 4 years ago.
I couldn't easily get biologics, despite a private appointment, but my GP was happy for me to buy a UVB panel (9x6ft TL01 Philips tubes), and she prescribed Enstilar spray-on treatment plus any other moisturising creams needed. It isn't anywhere near as strong as hospital light therapy, but starts at 30 seconds per side increasing over alternate days up to 4 minutes, and for no more than 12-14 weeks.
Mine cleared but crept back again, but to manageable amounts until this past few weeks.
I'll ask tomorrow if the nurse will check with the consultant about me being able to use my UVB panel carefully to help clear it.
I seem to get spells of all over itchiness mostly in the evenings, along with the occasional hot flush ....I stopped HRT earlier this year too, so perhaps need to start using it again - another question to ask.
Also, something is causing me to get trapped wind overnight, and discomfort wakes me up in the early hours ....goes rapidly once up and about though.
Not really happy if I put weight on - just got rid of the lbs put on with steroids for colitis 4 years ago - but a small price to pay if the pembrolizumab works! Good thing I like loose sweaters!
As you say, lots of unexpected niggles and things yet to understand, but it's a step forward!
I also read about the tumour agnostic drugs being considered for approval in the UK.
Thanks very interesting reading and yes they gave me Enststilar spray a great advance from Coal Tar preps. Going for a sigmoidoscopy next week thankfully things seem to move quickly in my hospital when there is a problem which is good they are looking after me well. Take care would be nice to keep in touch. xx
As one who twice spent a month in the mid 70's in hospital swathed in Tubegauze and tar ointment or dithranol paste, I do find the current psoriasis treatment a huge leap forward.
With u. colitis, I had a sigmoidoscopy when put into the wrong ward initially (surgical) - I'd known the symptoms pointed exactly to colitis, but the consultant insisted it was diverticulitis.
I should never have had that sig. as I had severe ulcerative colitis along with sepsis ...but all started to improve once in the correct ward with a very good consultant. The IV antibiotic duo and steroid treatment made a huge difference.
Bracing myself for the onslaught of side effects again after tomorrow ...they'd subsided to considerably less this past week. Still, at least they aren't serious or intolerable!
Hope all goes well and that you're much improved very soon.
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Good thing I like loose sweaters!
Prognosis Stage
Stage 4 NSCLC with metatasis to brain 
An update on my father’s immunotherapy for his lung cancer.
Nsclc stage 4 with brain mets
