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

The cancer has got a lot worse his prostate, pelvis and his bones but has not spread in to any organs. He went for a MRI scan today on his spine, This wasn't great news. The cancer of the prostate and pelvis is pressing in his spinal chord which is causing so much pain. This is actually quite serious as any wrong move could paralyse him. So with immediate effect he had to lie flat on his back and not move at all and on Monday he will start an intense course of radiotherapy on his spine to try and get the cancer away from his spine.

It really isn't good news for him but I don't think we are going to loose him in days which it felt like last night. If Mo could please give me her thoughts on this, it would be much appreciated as I felt relieved earlier but I'm still very scared and don't know what to think as like I said yesterday, I was told you can't die from prostate cancer it has to spread to organs first but I don't know what to think. The cancer is obviously very active at the moment as it has got worse even with all the treatment he has had x

hi, I wish you had private messaged me as I would have got an e amil to let me know you needed something, I have been away for 24 hours so I really am sorry I missed you last night.

Ok so you know I am quite forthright and would never intentionally mislead you so here is my take on what is happening with your Dad. I can try and put this into non medical jargon hoping it makes it easier for you to uderstand and relate to.

The first thing is that no spread to any vital organs is good, very good

the second thing is that the scans have shown that your Dad is probably having a spinal cord compression or SCC, I mentioned this condition to you on an earlier reply. This is quite common for men with prostate cancer where the cancer has spread into the spine. There are 3 main areas this can effect and each has different symptoms and outcomes. It sounds as though your Dad has his in the lower to mid lumbar region ie down low in his back. This would cause weak legs and difficulty walking, it is also incredibly painful as the tumour/s press against the nerves inside the spinal cord. The other two most likely areas for this are in the mid to upper back and the lower neck. It does not sound as though that is the case for your Dad so we can skip those for now. It is a very serious condition, indeed if left untreated in can cause paralysis and all that goes with that and in really severe cases even death.

Thankfully the hospital team must have partly guessed this and ordered all the tests to prove their thinking. That will be why they have stopped the enzalutamide for now as your Dad needs to undergo some fairy intensive treatment that is both physically and mentally taxing so he needs all his strength for that.

The normal course of action will be to immobilse your Dad as much as possible by telling him he has to stay flat on his back with no raising of the bed at all, this can be for 10 days or more and it is really hard for a patient. If you can imagine only being able to view the world from one aspect you get a bit of a fixation on any lights or marks on the ceiling. Also trying to eat or drink flat on your back is really hard, we have to be trained just how to feed a patient in that prone position. You and your Mum might like to get one of the nurses to show you how so that you can help at meal times. Also Dad will recognise your voices but will not be able to see your face so when you visit make sure you go close up and give him a kiss so he can look at you.

The next thing will be that he will have a lot of things done for him in terms of washing etc. he will be able and allowed to help with things like washing his face and hands, brushing his teeth etc. and maybe shaving, if he has been used to doing that all for himself and in his own bathroom then this change can be a bit frustrating.

Your Mum will be allowed to help if that is what she and your Dad want. Just to bear in mind this is a completely unnatural position to be in for so long, it is really hard so anything to relieve the boredom is good. Radio better than TV and having people around to stop him from trying to sit up a bit also helps. As treatment progresses he will slowly be allowed to sit up just a little tiny bit at a time though.

His treatment will start immediately with what is called an RT planning session the Radiology team will have your Dad slid onto the scanner bed so that they can pinpoint the exact areas that need treating, this is all done with very advanced computer imaging and the scans that were done earlier this week. They will mark up points on his body where the RT beams need to be focused these marks are called tatoos but they are really made with a special marker pen and dye unlike ink tatoos they do fade away with time. Indeed when washing or being washed the area of these marks will be avoided so as not to erase them at all. There may be 2 or more of these and they look a bit like a target cross.

Next stage is for probably 5 doses of Radiotherapy one done every day for 5 days.

This is a painless procedure albeit the movement and transfer will be very uncomfortable for your Dad so he may be given extra pain medication to achieve this.

He will also probably be fitted for a specialist back brace for after the RT, these look really uncomfortable but I am assured that they really feel great and are very supportive during recovery from this kind of problem. This will be worn whenever Dad is going to be moved until such time that the medical team are happy that he no longer needs it. This could be weeks it could be months and in some rare cases needed indefinitely.

Once again the good news is that it sounds as though your Dad had this picked up in good time so there may not have been any spinal compromise. If all the RT goes well and Dad responds positively to it then with lots of Physiotherapy and a great deal of patience he should be back on his feet again in a few weeks maybe even less.

Once you know how things are progressing I will be here to answer any questions you might have.

Dad may also have his medication changed a little with a new pain medication that specifically targets nerve pain being added maybe a drug called Lyrica.

He will be very tired, possibly a bit grumpy, possibly off his food (though you should encourage him to eat or use the high protein drinks the hospital will provide) so just be patient with him.

As for hospice, hospital or at home when the time comes, we can talk about that when and if it becomes necessary right now you focus on looking after your Mum who has bottled all this fear and anxiety up probably to help protect you, and of course your Dad.

You sound such a lovely lass so thankyou for caring so much to be posting here.

I hope this is not too much onformation for you all in one go

I will be thinking of you

best wishes

xx

Mo

Edited by member 18 Jul 2015 at 22:01  | Reason: Not specified

There you are Indigo I told you Mo would know. Why not message Mo directly so she can give you a personal answer.
Go to Mo's avatar picture, it will bring up her profile.
Within that profile is a "message " box which should go direct.

Good luck and best wishes.

Excellent advice from Mo as usual.

Keep focussed on the benefits for now. Tell yourself this has to happen to your dad to make him feel better.

if the CAT scan came back clear that is good, I still think the confusion and delirium could be due to meds, infection or an abnormal reading on something like Haemaglobin,Potassium, Calcium or magnesium. Have they done blood tests for all his normal blood functionality. You could try asking them if he has a problem in his bloodwork.

I think tomorrow should be the last RT they may want to see how he settles down 24 hrs or so after that.

I think you deserve a better explanation on just what is causing this so keep asking.

It is really hard seeing your lovely Dad suffer like this and it does make you wish it was either all over or all sorted out but sadly it doesn't happen just like that. I know this is a tough ask but you need to just focus on being there for him and give this another few days to go one way or another.

I will be thinking of you and wishing you as much strength as possible

xx

Mo

This is a horrible roller coaster ride isn't it Indigo.

I am so sorry that your dad has even more problems.

I'll be thinking of you tomorrow

Best Wishes

I love you so much, we of course know just how painful this road is so any help or advice or just plain comfort, virtual hugs you name it we have got it.

Indigo I know you have already met my soul sister Julie , we are the best of friends all through this horrid disease and thank our lucky stars through this forum, which is kind of weird but just goes to show how much friendship, kindness and plain luviness brings us all together when we most need it.

we are here for you

xx

Mo

I'm just sorry that a lot of replys I have had is through people's experience. It's a very cruel disease.

You feel alone because the sorrow is YOUR sorrow and nobody else can exactly understand that. Even your mum's pain and sadness is different to yours. The bond is different.

You love your dad to bits and hate to see him like he is, but for your mum he is the extension to herself and she is probably hoping that the Enzalutamide will extend his life so he can stay with her a bit longer.

This is no hard and fast answer to this kind of pain. I said many times when my mum was dying with cancer that you wouldn't treat a dog in the same way because you would be advised to do the kindest thing.
But as humans we cannot get past that "while there's life there's hope" aspect.

Try not to feel sad that your mum wants the Enzalutamide to continue, she is frightened of the future without him.

As for feeling alone, well, you aren't entirely are you because you have us. We may only be a virtual "family" but you know we're here if you need us. xx

Elaine and I are / have been thinking of you all Indigo . I cant really add anything to what the others have said , and am lost for words . Wishing for you

Indigo,

Having watched my father suffer with advanced  PCa for many months 30 years ago I do have empathy with your situation..

You are in my thoughts

Luther

Hi Indigo,

I can totally sympathise with you some people need to know when the worst may happen so that they can mentally prepare for it (I am the same) you are in such a nightmare place at the moment willing the worst to happen so your Dad does not suffer . I do agree with Mandy that if the Drs thought it wasn't worth giving your Dad Enza then they wouldn't do it. I suppose in reality know one can say exactly how long your Dad has left.

I remember vividly when my Mum died, she had cancer and then had a stroke at the time the Drs predicted 24/48 hrs as it turned out she survived another 10 days and yes the same as you I asked if they could give her something to hasten her death (it turns out that it is illegal in this country) http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-sealed.gif. The overwhelming feeling that I had immediately after her death was relief. 

None of us can walk your shoes but what we can do is support you through this awful time through our virtual community. Just call out and we will hear you.

BFN

Julie X 

Have you managed to get any counsel from any of the medical team yourself yet?

Your Dad may manage better at home in his own surroundings, if the pain is too much he or your Mum will act I am sure. Is he mobile enough to be safe at home without special facilities or assistance?

Try to get the contact information for the Macmillan unit and if necessary his GP may be able to get him referred there in the future.

If he is still being prescribed Enzalutamide then this may also aid an improvement. The Consultant would not keep prescribing it if he felt it was pointless.

Just give your Mum and Dad as much support as you can whilst respecting their decision.

You are a caring, loving daughter but there is only so much you can do.

All the best wishes

Xx

Mo