Stopping steroids - anaemia

Hi Karina, welcome to this site and I am sure someone will give you some extra advice but apart from not having any details of your father's cancer I assume that he is in palliative care?

I have asthma as well as PCa and whenever I have to take steroids I always have a hearty appetite and my general well being is improved. I would have thought that the Macmillan nurse could possibly be a little more sympathetic to your fathers condition and see that anything at all that made a difference in his day to day state of mind and health would be worth while.

Is there not any one else that you could talk to? ie doctor, specialist nurse or someone else on his medical team?

I hope you resolve this soon as Tesco's say " every little helps"

Best wishes Chris/Woody

Life seems different upside down, take another viewpoint

If the steroids are helping to keep you Dad mobile sufficient that he can get out of bed and dress each day then stopping them is completely counter productive. Once mobility is lost it is incredibly difficult to get it back even after a short time.

2mg daily is a relatively low dose anyway so any side effects will take quite some time to manifest. If and when they stop helping then they should be gradually reduced. If your Dad has a limited amount of time that may never be necessary.

If your Dad has Anaemia caused by his bone mets then transfusions will not help overcome fatigue or breathlessness for very long. Each time the period of improvement shortens measurably so maybe the first couple at best. My Husband had one at this stage and then no further ones in his remaining time. They are also a really taxing event for an elderly or frail person. Blood has to be taken every time and cross matched or at least group typed. A cannula has to be fitted and then depending on how many units being given, the patient is hooked up to the drip for anything from 90 mins to 4 or more hours. It can be a very tiring thing all on its own.

If the Anaemia is from chemo or other temporary treatments then that would be a different situation, transfusions can keep the anaemia at bay until the body recovers its own ability to create the necessary blood cells. My Husband had 5 transfusions through chemo all of which helped him from one chemo session to the next.

Quality of life has to be considered here, the medical team should discuss this with your Dad allowing him to make his own decisions and retain as much control as he can, whilst he is able to over the time he has left. My Husband kept that control right up to the end and it was really important to him.

There are several short documents available to download from the internet that might help you, if you google "guidelines for use of steroids in cancer patients"

I hope you are able to have a productive discussion with the medical team and that your Dad has his say also.

My best wishes to you

xx

Mo

Just to let everyone know - including Woody, Fiona and Mo...It's a 'swings and roundabouts' trade off between feeling a little better in some ways on the steroids, and other problems that we now realise may be caused by them, such as bad muscle wasting and weakness in his thigh muscles, loss of strength generally and difficulty breathing deeply. We will persevere with the weaning off and review if the above problems resolve a little. I think being able to move around unaided, albeit slowly will be more important to Dad than feeling better or hungry, overall. If anyone is interested I can do a further update next week after he has finished the reduction. He will still have the fatigue from anaemia but at least we will not be adding to it hopefully!
In the meantime I appreciate everyone taking time to show interest. Hope all goes well for you too.