Hi
My reason for asking the original question was because of the anaemia and presumed bone marrow infiltration. We both felt that the last appointment with the consultant was slightly uninformative - he had been given an additional appointment because of the recurrent anaemia. She said that the bone scan showed spread and that 'all his bones were affected'. She then offered the referral to the haematologist to see what the reason was for the anaemia. She also said that he would no longer be eligible for the Radium treatment which she had previously mentioned because of the anaemia. I think we both felt that something had been left unsaid.
When we received a copy of the letter from her to the haematologist she had said that his bone scan was a 'superscan' and that she assumed bone marrow infiltration. Neither of which did she tell us at our appointment.
The haematologist said there were 3 possible causes for the anaemia. 1. Premature death of blood cells was unlikely as his bilirubin level was normal. 2. Deficiency of iron, folic acid etc - he would phone us that afternoon if this showed on the blood results - he didn't phone. 3. Bone marrow infiltration - nothing he could do apart from blood transfusions and whatever treatment the oncologists could offer.
David started on the Abiraterone in September when it became clear that his psa was rising during the last couple of doses of Docetaxel. After a month it dropped from 34 to 19 but a month later it was 20. He has become gradually less well on the Abiraterone and I think we both assume that it is not working or if it is, it is not improving his quality of life.
Whether due to the cancer or the anaemia, he has less and less energy and his appetite is generally very poor. Yesterday the blood from Saturday seemed to kick in and he was able to have a short wander round Sainsbury's with me - the first time he has left the house since the pre Christmas gin shopping trip, apart from hospital appointments.
While he was having blood before Christmas I had a long chat with the hospice nurse. He said that there was a time when the 'numbers' are no longer relevant. His opinion was that the 'superscan' and the persistent anaemia 'did not bode well'. We discussed the possibility of him contacting the consultant to ask her to give us a better idea of where we stand. I was a bit hesitant about this as I didn't want to press her into telling David something he didn't need to hear yet just because I want to know.
Our appointment is next week so then we will know the latest psa. She has not yet mentioned enzalutamide which I will ask about. Also she had previously mentioned 2nd line chemo but I think this is very unlikely to be an option with the anaemia.
My original question still stands as I don't know how long someone can go on being totally dependent on blood transfusions, especially as these do not raise his Hb as much as expected and post transfusion his Hb drops again so quickly.
If we follow the 'normal for now' pattern, he will be a little livelier for a few days and then gradually more lethargic until the next transfusion.
Rosy