The Roy Castle Lung Cancer Foundation

dizzie-wh

Re Iressa/Gefitinib. I was diagnosed as stage 4 nsclc with pleural effusion in January 2014.Tested egfr positive following a talc pleurodosis. Have been on Iressa since then with remarkable results - one scan not even being able to spot the primary! However, have had a chest infection (klebsiella pneumonia) since October and two weeks ago a scan showed numerous blood clots in both lungs and enlargement in lymph nodes and primary tendrils - now on Fragmin injections. My oncologist feels both of these problems point to Iressa no longer working. Waiting on more tests and another scan. Has anyone else been in this position and what alternatives were offered? Thank you in advance for any information. Regards Diz xx

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My Wife had progression seven months on Iressa. Histopatholgy of Her resected lung primary showed t790m mutations. She's now respondin well to Tagrisso.

It's in the protocol of Iressa/tarceva treatment that when progression occurs to biopsy for new mutations and move on to a second or third generation drugs.

Best regards

Peter

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Thanks very much for your reply Peter - will explore that one ,as I haven't heard of it as yet. Diz x

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Your diagnoses sounds exactly like my mums. Pleural effusion, talc plural , EGFR positive, but with Mets to liver and bone. We are so grateful we have the opportunity to take Iressa (only 1 in 10 are eligible). She has been on this for 6 weeks and from someone who couldn't walk 10 steps without oxygen, she is back to my mum. She also is on daily fragmin since diagnoses as Iressa can cause blood clots (a side effect). We have just had our 1st ct scan with dye and awaiting results. Best wishes for you, there are always new treatments to be tried x

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Dear Dexter, Yes sounds as if we're on the same page - your Mum and myself. I was fortunate to be one of the first at my cancer centre on Iressa and it served me well for almost 3 years. Side-effects were pretty horrible in the beginning BUT Onc reduced my dosage to 1 every other day & life was good. Then in December 2016 found to have new growth & after some unsuccessful tries for a new biopsy & negative blood cultures, I was found to have the next mutation T790M. This meant I was again one of the first on Tagrisso/Osimertinib. Side-effects great - in other words - none!! Have been fortunate so far but have a little growth in my primary. Onc waiting and watching, whilst continuing Tagrisso, and suggesting radiotherapy to zap the offending primary. Like your dear Mum I have secondary to my liver but thankfully never any problem there. I do so hope she continues to tolerate Gefitinb - commonly called Giffy on Macmillan forums. It's a great drug - was given 3-4 months and here 4 years later!!! All the very very best to you and your Mum. Love Diz xxx

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And just another similarity ! I was found to have PEs and put on Fragmin for 6 months. Taken off it and suddenly loads of the little darlings - so on Fragmin 12,500 every day for life. Took a bit of getting used to and, in the end, my tum was full of lumps and bumps which made it difficult to find a spot to inject. Now I tend to inject on my bum and thighs. Got a bit more space there LOL. All the best. Diz xx

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