Enzalutamide causing pain??

Hi Indigo 1,

I can't really answer your question but I just wanted to say hi and bump your thread back up to the top where it will be seen by more people. I would think the reasoning for taking Dad of the Enzalutamide is if it does not seem to be working and the pain is increasing then there wouldn't be much point in continuing. I know this probably isn't what you want to hear. Have you been in touch with the Hospice nurses they are very good at getting pain control sorted. It maybe worth having a chat with your Dads Consultant at the hospital. I am hoping that Mo (Edamo) will see your post she is pretty good with advice.

Take care

BFN

Julie X

Hello Indigo, another member just saying hello and welcome.

I'm sure that somebody will be along with advice on enzalutamide and hat is happening with your dad.

Sorry I don't have any experience of the drug so cannot help but e do have many members with knowledge of it

I am glad your post was bumped as I had missed it, they often take a day to get through the moderator who has to check every new conversation to try and prevent any inapropriate ones.

Your Dad does sound to be quite poorly and the level of pain he is suffering is not good, neither is the high dose of morphine if it is making him hallucinate.

Regrettably there sometimes comes a time when a Man becomes totally resistant to hormone treatments like the 3 monthly injections, tablets like casodex (biculatmide) etc.

Your dad's team may have opted for enzalutamide as it is a much newer type of treatment, he may have been taken off it just temporarily as he is so ill, but more likely (and this is the toughest part) because it is not working for him either.

His pain and poor mobility are probably due to the cancer being quite active and putting out much higher levels of PSA, he may also be having some problems with calcium levels. If he has had a blood transfusion this will be because he has readings of some cell types that are abnormal, like Haemaglobin, red cells or white cells, the transfusion should boost those and improve general well being for a while. They can do these fairy regularly if they help. Has he had any calcium treatments or bone strengthening infusions like Denusomab or Zometa?

You have not said what your Dad's PSA level is now and what it has been previously, this information might be useful to anyone responding to you. Also has your Dad had any chemotherapy at all or has this been mentioned as an option? A combination of age and general strength and well being would impact on the possibility of this.

As for the pain management, some people really do not tolerate morphine or other opiates taken as tablets or even as infusions/injections although they can manage the skin patch varietals like fentanyl which have far fewer side effects. There are so many different pain medications for ll different types of pain (nerve pain, bone pain, muscle pain etc) also they can be given in combinations and in so many different ways that Macmillan and other specialist oncology nurses, hospices and even some medical practices and hospitals have specialists who deal in this.

If you are able to speak to your Dad's GP or the doctors in the hospital ask if your Dad can be referred to the Macmillan pain management team, or your local hospice. The constant pain will not be helping your Dad to deal with things and will have a very significant impact on his quality of life (often referred to as QOL)

You mentioned he had Radiotherapy (RT) was this in his hip to try and reduce any boney mestatases (mets) there? If your Dad has had a recent MRI or CT scan have they shown any spinal mets as these can also cause significant pain and mobility issues as well as general weakness in places like the legs, arms and neck.

I know this all sounds like so much informtion and so many questions but the more we know the more we can try and guide you to the right place and people to get the professional help you need for your Dad.

One thing I would add is that people often balk at the word hospice as they think that is where people go to die. That is not at all true these days, I work in a hospice as a volunteer and we have people who come and go for many different reasons the most common of which are pain management and poor appetite.

If you need someone to chat with off the forum you can always send me a private message through here.

Thankyou for caring so much about your Dad to join us here, having your support will mean so much to him.

Best wishes

xx

Mo

I know just how upsetting this is for you, the weakness and sudden deterioration can be very distressing when it is happening to someone you love dearly. You have not mentioned if you are on your own with your dad, if you are it makes it even harder.

The drugs he has been taking for 2 years can weaken muscle and cause problems with mobility, using a wheelchair or walking sticks/frame is a really sensible thing to do as the last thing you want is for your dad to havea a fall. PCa makes men very vulnerable indeed to fractures and a condition called spinal cord compression or SCC. This is why I asked about the scans and if your dad has mets anywhere other than his hip.

The morphine and other pain killers or any type of infection can also cause all sorts of co-ordination and mbility issues so do not despair just yet. The hospital should be checking all these things while he is there. 73 is not old at all and if your dad has been doing well for 2 years up to now on just HT then this could be just a transition from relatively passive cancer to something a little more active.

Docetaxel is one of the common chemotherapy treatments so if Dad's oncologist considered this then that is a positve thing, the fact he chose enzaltamide instead was probably to give a new type of less debiitating treatment a chance first.

The treatments he has had so far are palliative in other words to make things more tolerable and to prolong life as long as possible, as from what you have told us it sounds like your dad has what is called advanced PCa which cannot be cured or put into a state of long term remission but it can sometimes be managed.

Again do not despair just yet, we have had and still do have men on this forum around the same age as your dad who have lived with this level of PCa for quite a few years. Much depends on the cancer and how it behaves.

If you manage to get the consultant oncologist or one of the hopital doctors or Macmillan nurses to have a chat with your Dad with you there,you may get them to tell you a bit more about his current issues and what treatments they are going to try including the possibility of chemo.

What you need now more than anything is some answers to questions and a good honest discussion with the medical team so that you can know and understand just what you are going to be supporting your dad through.

I will be thinking of you

best wishes

xx

Mo

He is sleeping a lot now which I guess is kind of a good thing as whilst he's asleep he's not in pain.

I hate to ask but really need to know. Can he die from this or would it need to spread to organs first??

I really feel like we are losing him but no one has said we are

Thanks x

Indigo,

My heart also goes out to you and I wish that I could offer a line of hope, Dad does sound as if he is very poorly this disease is so different for everyone and some get years and others are not so lucky. One thing I will say is you sound like a lovely and caring daughter.  Our path is not so very different and we are just a little bit behind you on the rocky road. I am so glad that Mo (Edamo ) has picked up on your thread . She has given some very good advice on pain relief and hospice care. Please speak to Dad's Oncology team this includes any Drs that are involved with Dad's care they will be able to guide and give you the facts on your Dad's illness.

When you get all of the new scans and bloods I am sure the team looking after Dad will be able to help you understand what is happening.

BFN

Julie X

Indigo, when the people we love to much that it hurts are very poorly and have to leave us the pain can be unbearable at first.

Both you and your mum will have a painful and difficult time in the days ahead.

If dad is already weak and not really awake any more is home the best place for him and for you and mum come to that. If he is in hospital or in a hospice there are people there to try and alleviate that pain.

Mo has given such good advice and from personal experience so I cannot add anything else worthwhile, except to say that over the past 3 years I have had to relatives with terminal cancer and they ended up in hospices and the care and love that is extended to patients on their final journey cannot be bettered.

Keep strong for your mum. You say your dad is your world. Well, do him proud by supporting your mum and taking his place in helping her through the dark days ahead.

I'm thinking of you all, it's a tough road but you'll walk it well.

I'm sorry I have just realised that j didn't reply back to you yesterday. Thank you so much for being honest although I think I knew that answer anyway. I have always heard you can't die from prostate cancer and I think that is what is making this so hard to handle as its such a shock to see dad so poorly.

We do have a meeting today with dads Dr and the palative care team so hopefully ( I think it's a good thing ) that we might get some answers today.

For the first time last night, my mum broke down and admitted that she thinks we are losing him. She said she wants to arrange for him to go home and get the help and care that we need for dad to be comfortable at home.

I never knew it was humanly possible to hurt so much

Everybody's support on here is just amazing and I am so very grateful I came across it x

hi

just want to say am thinking of you

nidge