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Clinical Trials, My New Journey

User
Posted 19 Jul 2018 at 21:33

I had my eighth (and last) cycle of Cabazataxel last week. Cut short from the planned 10 cycles as it has stopped working. Saw oncologist yesterday and who has ordered up new CT and bone scans. PSA is 64 with a 6 week doubling rate. 


Met with the clinical trials consultant today and was informed that unfortunately, my tissue sample which had been sent off to Germany has come back negative for a specific gene deficiency they were looking for so unable to get on this particular trial. Apparently 1 in 4 people have this defect so if successful could potentially help about 10,000 men every year. 


I was told however, that the trial will be opening up at a later stage to a wider range of men with different DNA anomalies. 


If interested, here are some links for the trial. 


https://ukctg.nihr.ac.uk/trials/trial-details/trial-details?trialNumber=NCT03188965


https://clinicaltrials.gov/ct2/show/NCT03188965


 


So, I have been offered the chance to participate in a different trial. Once again a stage 1/2 trial., my tissue samples need to be sent off for analysis. This time to America - My tissue samples are better travelled than me at the moment! This will take about three weeks. This would work out great as they need a minimum 28 day "wash out" period after my last chemo before starting on the trial. 


Another benefit is that this time, instead of just looking for a specific genetic faulty, my entire DNA is going to be mapped out and participation in this trial is conditional on a lot more different sorts of defects so there is a greater possibility I may have some of these. It also means that with my DNA sequenced, if I am unsuccessful again, any new up and coming drug will get accurately matched up with me with greater certainty. 


I was told people are paying about £5000 to have this DNA test done privately, so it is a bit of a win win for me.


Here are some links for this trial


https://www.ukctg.nihr.ac.uk/trials/trial-details/trial-details?trialId=35692


https://clinicaltrials.gov/ct2/show/NCT02797964


https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-of-sra737-for-advanced-cancer#undefined


This trial is not randomised (so I know 100% I get it) and the dosage is now known and some - not all-of the side effects are being seen, which is nausea and diarrhoea.


So now, I have another three week wait when in the mean time I will be getting my scans. Plus, every day passing is another day further from the chemo and the opportunity to get a bit stronger.


Best regards 


 


 

User
Posted 19 Jul 2018 at 21:33

I had my eighth (and last) cycle of Cabazataxel last week. Cut short from the planned 10 cycles as it has stopped working. Saw oncologist yesterday and who has ordered up new CT and bone scans. PSA is 64 with a 6 week doubling rate. 


Met with the clinical trials consultant today and was informed that unfortunately, my tissue sample which had been sent off to Germany has come back negative for a specific gene deficiency they were looking for so unable to get on this particular trial. Apparently 1 in 4 people have this defect so if successful could potentially help about 10,000 men every year. 


I was told however, that the trial will be opening up at a later stage to a wider range of men with different DNA anomalies. 


If interested, here are some links for the trial. 


https://ukctg.nihr.ac.uk/trials/trial-details/trial-details?trialNumber=NCT03188965


https://clinicaltrials.gov/ct2/show/NCT03188965


 


So, I have been offered the chance to participate in a different trial. Once again a stage 1/2 trial., my tissue samples need to be sent off for analysis. This time to America - My tissue samples are better travelled than me at the moment! This will take about three weeks. This would work out great as they need a minimum 28 day "wash out" period after my last chemo before starting on the trial. 


Another benefit is that this time, instead of just looking for a specific genetic faulty, my entire DNA is going to be mapped out and participation in this trial is conditional on a lot more different sorts of defects so there is a greater possibility I may have some of these. It also means that with my DNA sequenced, if I am unsuccessful again, any new up and coming drug will get accurately matched up with me with greater certainty. 


I was told people are paying about £5000 to have this DNA test done privately, so it is a bit of a win win for me.


Here are some links for this trial


https://www.ukctg.nihr.ac.uk/trials/trial-details/trial-details?trialId=35692


https://clinicaltrials.gov/ct2/show/NCT02797964


https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-of-sra737-for-advanced-cancer#undefined


This trial is not randomised (so I know 100% I get it) and the dosage is now known and some - not all-of the side effects are being seen, which is nausea and diarrhoea.


So now, I have another three week wait when in the mean time I will be getting my scans. Plus, every day passing is another day further from the chemo and the opportunity to get a bit stronger.


Best regards 


 


 

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User
Posted 20 Jul 2018 at 17:02
That sounds like an exciting proposition Orm123.

I hope you can benefit from the trial
We can't control the winds - but we can adjust our sails
 
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