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October 25, 2013 at 5:53 am #21641lak1Participant
I had reinduction of Ipi in March for my stage Iv ocular melanoma.
Stable from Feb to August when I got progression sub cm lesions in lungs and sub cut.
Started chasing anti PD1 around EU eventually got really close to going to Norway to do MERKs one but then they discussed admitting and English patient and closed the trial with 48 hours notice saying it was impossible for me to arrive before the trial closed- wrong but they assumed. We do not why it was closed at such short notice but it seems a bit of conincidence.
So also started thinking of TIL therapy either in Trial at Bethesda where you know what you have to pay living and travel costs or in UK where the costs are very unclear but somewhere between £30 000 to £70,000. NHS is unable to price anything accurately. This is obviously very worrying when a patient can not plan their expenditure. Of course in the UK I would still have travel and living costs. Prof Hawkins who does it in the UK is lovely and is of the same background as me , I admit to being scared of being treated in another culture.
Anyway I should not have worried my scans the largest lesion in my lungs were 7mm so it was expected that by now they would be at least a cm and be able to be harvested. No they were not a cm on the prelim report from the oncologist on day of scanning. So whether there is growth or stability is still to be decided but what is clear it is not a rapid change. One sub cut lesion has gone. So once again in me they are talking about a late ipi response. Prof Hawkins suggested on progression I should once again do Ipi! I think Prof Ottensmeier who has put me through Ipi twice would break down and cry he is so scared I will die of Ipi. I keep telling him I would rather die trying than watching!
So really although all the unknown is very hard , and the lack of a plan is difficult to say the least however I feel very well and I am determined to make the most of this treatment free time. As obviously all lesions sub cm I am not eligible for any trial.
If anyone has any suggestions please make them.October 25, 2013 at 11:51 am #62830Catherine PooleKeymaster
Thanks for the update. Have you looked at the ADC trials that Jonathan has discussed? It is helping another patient who has ocular. We listed the sites, Australia and U.S. only I’m afraid. But I will double check to see if other sites are opening. Sorry to hear all you’ve gone through but sounds like you have a compassionate doctor!! Here is the site listing:
http://clinicaltrials.gov/show/NCT01522664October 26, 2013 at 11:10 am #62831lak1Participant Yes Catherine and Dr Infante is another very compassionate Dr, now I am again seeming to get a response so that excludes me from everything- had the official report yesterday the largest lesion has gone from 7mm to 4mm and that remains the largest lesion.
It is very good to be getting this news but it s just hard doing nothing. No one will accept me for anything with shrinking lesions. I am very happy to have shrinking lesions, like all patients however I would rather be NED
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