Cetuximab, Oxaliplatin, now potentially Lonsurf - what does it all mean long term?

FormerMember over 3 years ago

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Perforated Bowel March 2020, T4a N2b M1

First chemo Cetuximab - 12 cycles.

Responded well and it appeared to have gone to sleep

6 month break

CT Scan back with a vengeance: lymph node tumours, no major organs affected

FOLFOX: Oxaliplatin and 5FU

CT Scan last week showed it isn't working, so may be going on to Lonsurf - Only Lymph Nodes showing disease, three os them with tumours on average 1 cm (10 mm) - grown about 10% in last 6 months, so appear to be slow growing, at the moment.

Any one got experience of Lonsurf and prognosis/time scale?

Being referred to Christie's in Manchester, to see if any trials available in place of Lonsurf.

IF Christie's can help, do I go with them (weekly trips top Manchester from Lichfield) or go Lonsurf as only need travel to Burton weekly - lot shorter journey?

Any feedback welcome, positive/negative/neutral - I know it's up to me in the long run, just wondering about Lonsurf effectiveness and time window that it may create?

Thanks for reading and responding!!

Ian

court over 3 years ago

I had a look at some clinical trials recently and I would certainly keep an open mind . If you Google cancer research trials for bowel cancer there was an interesting one looking at the use of Immunotherapy with a lonsurf type agent if I remember correctly for a sub group of patients that previously did not meet the cell type criteria . I have been following a few cases in America that are having some good results . I can’t quite remember if it covered Christie’s but definitely worth hearing more about .
With lonsurf I have read that it’s aim is stability for the sub group that it works for had been looking into it .

There was a lady that used to post on here and the last contact it was still stable and tolerable over a year later . Understandably only one isolated case but you only ever need to be the one .

Certainly slow growing so that is a positive . Are you keeping well despite them ?

Take care ,

Court

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