My husband completed his 6th and final chemo session nearly 4 weeks ago. He coped really well and is starting to feel much better now. Hair starting to grow back, fatigue much better, taste improving daily. He was supposed to be starting a trial afterwards - either STAMPEDE or TITAN. We were assured by the oncologist all through our appointments that there would be no problem with eligibility and spaces would be allocated. When we saw him in November after the 4th session, the oncologist and the clinical trials nurse who was present gave us a load of written information about the TITAN trial as we had not heard much about this, and then said that we should enjoy xmas and at the appointment scheduled for the beginning of January we would let the oncologist know which trial we had decided.
After Colin's 5th chemo he got sepsis which landed him in hospital for 3 days. He responded well to the antibiotics and injections into his stomach and his neutrophil level went back up really quickly. The oncologist decided the 6th chemo session could go ahead - but with antibiotics taken as a precautionary measure for a week from day 5. The planned 6th session was late as the chemo nurses had no information about the antibiotics as it hadn't been forwarded to them. We ended up having to go upstairs to see the onco to authorise the session straight after Colin had had his IV anti emetics and flush through. By the time this was sorted out the Docetaxel had exceeded it's use by time so it couldn't be administered and he had to come back the next day when the new chemo had been made.
Now I would never class myself as a complainer. I work for the NHS and I understand the pressures staff are under first hand, and the inconsistencies from the oncologist from one appointment to the next, well I just let those go over my head. I thought as long as Colin was getting the best treatment It didn't really matter if the onco said the complete opposite from one appointment to the next - and this he did several times. However, at the unplanned ad hoc appointment to confirm the chemo go ahead with antibiotics, he said to avoid another journey to see him for trials decision which was the next day, he would be happy to cancel this and re-arrange this for 2 weeks time. We agreed to this, although we were a bit worried that he said then that the eligibility for the TITAN trial was quite difficult ( he said there was no problem at the previous appointment) We had more or less decided that STAMPEDE was the trial we wanted Colin to go on however so we didn't panic. We just thought the usual - the onco was giving a big thumbs up for TITAN when we saw him at the last appointment, and told us there were no eligibility problems, and then completely backtracked on this on the next appointment - pretty standard for him.
Roll on last Friday - the appointment to confirm which trial Colin was to go on. I couldn't go with him as I was working but our son went instead. I thought it would be just a formality anyway and we had decided definitely on STAMPEDE. The onco was not at the appointment but his registrar or someone was there in his place and the clinical trials nurse who had been there as his right hand man on every appointment. She told Colin she was just going to fill in an eligibility check list for STAMPEDE. Everything was ticked off as ok, and then she said to him ( or words to that effect) ' Oh look. You aren't eligible because you have started hormone therapy more than six months ago' - it was the middle of June. Colin was so shocked. The trial was really important to him because of the extra scrutiny he would get. My son was speechless initially, and then eventually managed to let them know how upset he was
We have had a few days to calm down and take stock of this. My 3 sons are all very upset and want to take it further - If the oncologist can't even get the timescales for trial eligibility right when we have been seeing him since August- what else has he got wrong? My reaction after the initial disappointment was to just let it go and to concentrate on moving forwards. It is just a trial and we are still getting the 'gold standard treatment' However, the psychological effect on Colin is not good. He had hoped for the trial because of the extra scrutiny (it was hormone meds and metformin) On top of this he has also been told that they will not scan him routinely or do any other tests - like a PET scan. Just PSA tests from now on and if he has any concerning symptoms then further tests would be done.
Am so sorry about the long post. I was just going to ask about follow up monitoring following chemo. Just got a bit carried away sorry! Are PSA checks enough for follow up following chemo along with being pain/symptom aware?
Ruth