Grahame Jelley

Thanks for sharing. Inspiring and aspirational story. Stage 3b and halfway through 26 projected Durvulamab course. Last scan 3 months ago and another planned but not yet scheduled . 50% shrinkage of Primary lung and nodes not remarkable upon it seems blessed that side effects been minimal though recent weeks mildly intrusive muscle and small joint pains . 12 months since unexpected diagnosis and excited to have beaten the 8 month survival odds to be able to walk my daughter down isle on 22ndAugust. It seemed such a far away goal at diagnosis and yet here we are with a positive future based on all your reported successes kia kaha from New Zealand .Remain strong , positive and eyes on the future possibilities Grahame

New article just out on Pacific trial https://www.jto.org/article/S1556-0864(19)33529-4/fulltext

Great news Barb. Sitting in chair for # 10 today. Lesion shrunk +\- 50% ,mediastinal nodes reported smaller , mild radiation scarring . Physically doing reasonably well. Looking forward to daughters wedding next month. Bonus as at diagnosis October 2019 that was not a “given”.

Hi all sounds like quite a journey you are on Ron. All the best and trust all procedures will go well. Inhad my last Durvulamab deferred due to increasing cough and some exertions breathlessness and an anxiety about COVID virus even though my cough had been well established for some time and my wife and Inessentially in isolation for 19 days as part of New Zealand lockdown. They sent me for swab anyway and a chest X-ray . Bloods all good , swab negative but Xray shows possible radiation pneumonitis in zone of radiation. Upper mediastinum and left upper lobe. Have urgent Chest CT scan Friday and hopefully they will agree to continue therapy. Have been trying to control cough with durotuss ( Pholcodine) . I have a prescription for gabapentin as next step whilst awaiting CT scan and oncologist avoiding prednisone at present will keep you updated Grahame

#4 done and dusted . Solo 3 hour trip to treatment centre and back as no support person allowed into unit. Persistent cough and mild shortness of breathe. Doc listened to chest and clear of noise. Bloods all stable and within normal parameters. Still couple months away from next CT scan. New Zealand in strict lockdown. Only essential workers allowed out homes or if have ssentialntravel like mine yesterday. Slow increase in numbers of positive cases but last 3 days been almost static . Some people not playing by isolation rules and getting a hard word from either their community or the system Thanks for everyone’s positive approach and goodwill Grahame

I await to hear about my treatment on Friday. New Zealand going into effective lockdown apart from essential services . Persistent cough at present but concerned about potential conflict of prednisone use and COVID 19 illness . Await conversation with oncologist this week grahame

Thanks DFK your optimism is contagious. Let’s just replace Covid19 with your contagion Grahame

Good to hear Tomm Interestingbfor me is now after #3 I can report that I immediately on way home feel like my allergic conjunctivitis becomes more noticeable and I get flitting and fleeting areas of itch in differing areas of body. Seems consistent and only for the immediate post infusion couple hours. Fatigue usually most noticeable Wednesday following Friday infusion. Mild dry cough and mild aches in muscle and joints when 1st mobilise in morning. Described to my wife “ like Tin man in Wizard of Aus” but am in NZ Grahame

Keep up the humour Tomm. Keeps me smiling Grahame

Thanks DFK you are so eloquent. Had you considered a career as an author? grahame

Hi DFK thanks for always posting such positive thoughts and giving such hope grahame

Hi Grahame here #2 done and dusted on Friday. Bloods all at normal parameters . Scan prior to commencement of #1 infusion showed 2 mm reduction in Lung primary and 5 mm reduction in R4 contra lateral node as result of radiation and chemo. No new disease. Next scan 3 months. So far”touch wood” minor side effect of mild dry cough , midday fatigue and minor aches and pains . Hope that side effect profile remains minimal. great support on this forum. Thanks

Hi DFK what wonderful news . An inspiration to us all to continue the fighting our journey. Positive approach you took has paid dividends it seems . Look forward to reporting similar success in the future have a great holiday Grahame

Hi I had minimal burn on chest and quite a reasonable darkened patch on back after radiation. This has healed quite nicely . Have had a single dose of Durvulamab and 1 week in have noticed surprisingly the milder chest burn area developing a itchy rash more so than the back. Early days for me though. Number 2 on 28 Feb. I do find energy levels are down but persisting with walking dogs, pottering on yacht trying to get it back in water and some general maintenance around our 2 acre property. Grahame

Thanks DFK have valued the advice and support of this forum. Look forward to progress under oncology care and benefits of Durvulamab Grahame