My Dad with PC Bone Metastasis Gleason 7

Cancer
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Firstly, please pardon my English (not my first). I have been following and reading this thread for awhile, found it very informative, often entertaining in this difficult time (Thanks to you both Carl n Dudley). My Dad is 72, had prostatectomy in Jan 2015, now he is bed rest in hospital for the last two weeks, unable to walk, receiving RT (3x so far, recommended 10x) with Prednisone, and Physiotheraphy twice a day; starting training with Medi Spinomed spine support for sitting up as we speak, however it's a big relieve for him at least for now. He is an independent bloke in nature, played tennis for 25yr, travelled the world in 60 countries, bet he can't wait to run

To my understanding, he should have had RT straight after operation in Jan, no wait and see action. Stubborn old man, there you go.

I haven't come across any serious PCBM in this thread, I would like to hear more about the life span in this stage, management, follow up treatment; as I was told by his oncologist 2 years but in wheelchair. Any advice would be very much appreciated. Many thanks.

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I have sent you a private message with a link that may be of use. I hope you will keep in touch here. i agree that most of the exchanges here have been to do with diagnosis, primary treatment and its side effects.

With my best wishes to you both

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Good day to you GeorgeGG. 

Thank you for your message, it's appreciated and I have replied to you.

In this side of world, there is not enough awareness about PC and understanding, or even a support group. My dad was diagnosed 3-4 years ago (he didn't take it too seriously then) consulted with oncologist in SGH (Singapore General Hospital), he was recommended for RT 30x at that time, due to his worry about side effect he decided against it; therefore gone for Calumin + injection every 3 month for nearly 3 years, 1st year PSA was nil, 2nd and 3rd year PSA was around 0.29. 

In January 2015, panic kicked in when his PSA gone up to 5.6, and without much hesitation he decided for prostatectomy in Malaysia (all this time I wasn't told by my family, since I live far away, it's unbelievable, otherwise I could have done something for him, again he is stubborn). After operation he was advised to take Calumin again for another 3 month (wait n see), during April he developed probably the most unimaginable worst symptoms from his normal active self, like passing bloods, leak urine, inability to walk, severe back pain, low blood cells, slurred speech, then he was admitted to hospital till now. If the earliest diagnosed was taken seriously and he listened to oncologist in SGH (he realised it), and maybe thing will be different now (or maybe I am wrong).

On a bright side, he feels so much better now than a week ago, more awake, chatty, talking to his friends over the phone, joking around which I thought lovely to see just like my normal dad. In term of pain, it's getting better each day, less painful (his major problem is spine, lumbar vertebrae), he is able to move side way without complaining too much (impossible a week ago). He first time wore Spinomed this morning during PT session, able to sit up without any pain, I could see how trilled he was, must meant a world to him. I think from now on he may need to wear it all the time except sleeping and we will consult with specialist as we go.

He already had 4x RT until today, weekend rest. Side effect has been mild; lost appetite, dry skin so far. I make sure he eats well, small meal but frequent, fruits, avocado with olive oil in between meal, multivitamin, plenty of water. Music helps. 

Regards Miki 

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Additional information: Dad is taking Omez (gastric problem), Prednisone, use Duragesic patch, Extimon anti biotic injection, Concor 1.25 mg (recommend for irregular heart beat but I'm not so sure about this as it's not severe, also he has been like this for many years, it doesn't really concern him either. So we will discuss whether he should stop taking this later on. 

His Hp was low yesterday Hp8, so had 2x 500cc in 2 days before RT can continue again. 

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Correction: 2x 500cc blood transfusion. 

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Hello My Dear Miki,

How unfortunate it is to make the acquaintance of your brave and perky self under these circumstances.  Your Father is blessed to have you caring for him.

Also,  thankyou on behalf of Carl and myself for your undeserved kind words.  ( I think he's probably more grown up than I am,  but don't tell him that ! ).

You ask about the implications of your Father's current condition which must be causing you great anxiety.  And your Father puts on a brave face to lessen your distress.  

Well Miki,  there is no way to sugar coat this :  from hereon in you need to steel yourself to be a witness to your Father's imminent final trial,  of resilience and courage.  

It is a fate that many of us who contribute hereon will ultimately have to face.  We hope later rather than sooner.  It is the ' elephant in the room '. What Carl refers to as our Ghosts.  And it is perhaps in not knowing with what fortitude and resilience we ourselves will meet our fate,  that  we remain silent on the subject.

It is good that the Hospital Med Team are giving him Radiotherapy for pain relief.  But you would perhaps instinctively know,  that there is only so much that they can administer and that his other vital systems such as blood,  kidneys, liver. and etc., can take.

And so sadly you and your Family,  must start the process of preparing yourselves for the inevitable which,  from the sounds of it,  might be no more than two to three months away.   Perhaps,  even less.

The initial sessions of Rad do relieve the pain and accordingly spirits lift.  It is within this brief golden window that you will have the opportunity to let your Father know how well loved he is and he will receive this lovein a fully cognitive state and be comforted.

Well,  that's enough from me,  probably more than enough.  Fortunately  however there are souls on this site more sensitive and genteel than myself and I hope,  they will rally round to support you.

My thoughts and prayers are with your Father and you.

With Kindest Regards

Dudley

 

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Miki,  I had promised myself that I would stop blundering about on these Posts,  but it seems that wih my pessimistic attitude about your Father's condition and prognosis,  I may have done it again.  

Please accept,  my sincere apologies. 

By way of mitigation , your Father's present condition measures almost exactly,  that of a Friend's Sister who very recently succumbed to metastasis from a  melanoma.  

The episode of slurred speech does seem to suggest some form of cerebral  involvement too. I remember that is what happened to the Lady I speak of..  Happily though,  your Dads Oncologist is forecasting 2 yrs!  And he'd know a lot more about it than I do.

Dudley

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Thank you Miki,

we have ignorance over here in UK as well. Ignorance caught me. i am keen on education for women as well as men. My brother in law's wife saned him by pressing him to check his PSA. He was diagnose July 2014 the same month as me.just co-incidence.

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Dudley, thanks for your message. Hope you are well. 

....and not so thanks too, it cost me a bucket of tears, and now depressed, lucky it's not in the winter I hope your sense of humour keeps you fit and healthy. You don't need to apologies silly you, eventually we have to face the inevitable don't we. I keep reminding myself how much my dad had done and achieved, but go before 80 and my parents last travelling this summer, I feel like very much pinching myself. Also by living overseas far away from them I always feel guilty.

Thanks for mentioning the 'golden window', I agree with you indeed. I'm in the hospital 24/7 with him, spending time, talking, hugging him, and don't forget to laugh too. Being in a hospital day in day out, I'm able to observe and monitor every details, and push my luck talking to his oncologist, RT doctor, and other medical teams. The doctors don't feel the importance and necessity to fully explain to you over here, therefore I have to be proactive asking question over question. Instead of telling you look up for side effect symptoms they told you no side effect. Duh..... 

Sorry to hear about your friend's sister, how rotten that is. 

My dad is fortunate to have a tight neat of family support, having a live-in nurse in hospital helps in so many ways. If not careful we are gonna be worn out too. Having a rest this weekend out of hospital door, feeling bizarre and will crack on with my cooking session.

Dont stop blundering, Dudley. 

Bon Weekend. 

 

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Dear George, hope you are well and the sun is up in the UK. 

PC is dreadful indeed like any other C disease. We have pretty much up to date informations back in the UK, don't we, but get into NHS for immediate treatment is off putting for some people (it's just my opinion). So how are you getting on and where about are you with your treatment so far? I'm looking into a follow up treatment for my dad after his initial RT (will have review at the end of 10x), maybe in SGH to see what they can do. Any advise will be very much appreciated, George. Thank you again for taking time to response.

At the same time, we are also planning ahead how to manage my dad in his own home, in term of secure and safe dwelling. Any advise will be appreciated. 

Have a lovely weekend to you and your wife. X 

 

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Dear Miki,

Your courage is exceeded by your Grace and I am humbled.  

Please dry your eyes;  thereby sparing me the fullest extent of angst,  which has over-layered a recognition of my crassness.

Also you must not continue to feel guilty,   for a minute longer.  As the Father of three men,  I am certain that your Father would not want you to feel any remorse for the path in life that you have trodden,  even though it has led you away from the heart,  but not the Hearts,  of your Family.   We parents want only the best and health and happiness,  for our children.

Being back in the everyday world will do you good this weekend and ease the feeling of strangeness caused by this vital situation and the inherent introspection,  that follows in its wake.  

I remember the beautiful Botanic Gardens in Singapore which, when in my mid-forties,  I tried to run around in a spiritely fashion after stepping off a long flight and I recall thinking ... 'Do I breathe this air, or wear it !?'

Then, there was this lovely tall,  willowy elegant Chinese lady who was the concierge of the Business Room of the Marco Polo with its computers, phones and faxes.  I was smitten.  So I drew up an 'invitation ' for her to join me for a drink later in the day.  I had hand-printed it on a card which had three boxes,  of which she could tick one.  The choices were  1) Yes,  I will come and have drink with you.  2) Yes, I would love to come and have a drink with you.  3) I am dying to come and have a drink with you.  To my surprise, she ticked number one,  rather than call Security.  

Later we met and she was even more lovely in a beautiful tailored traditional dress with a side split. ( Have Mercy !).  We went out of a back door because She said our fraternisation would not have impressed Hotel Management.  So, we had drinks in a nearby hotel and then strolled along Orchard Street.  I have to say,  she was The Girl From Ipanema,  Chinese style.  And so comparatively young,  so lovely.  I began to feel like a Western ape.  Not quite as bad as Hollywood would cast it ... but even so ...  Anyway we enjoyed each other's company ( I think/hope ) for a couple of hours;  but she was ever-fearful of being seen with me by other Hotel Staff,  so much so that eventually,   I began to feel rather guilty at having asked her out and when we actually bumped into some of her girl-friends whom she made swear to secrecy I thought  ' I'd better do the decent thing and say goodnight '.   Anyway,  so we parted but before she went I said  ' but why did you agree to come? '

And here's the real kicker ... ' Because you didn't have a 'no' box ! ' she said 

Ooh,  ouch,  imagine how I felt !

So there you go Miki,  and if any of that rings a bell ,,, ?

May God watch over you and keep both yourself and your Father in His sight.

Dudley

 

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I posted a rather lengthy response to this post, and it appeared to be posted in the thread, but now when I return it is nowhere to be found. Can anyone explain what may have happened? I am new here and I think that fact, in and of itself, may be the reason? Do you need to have a graduated point level to be able to post comments? I know some forums are like that. I am more of a driveby commenter in some forums, and I don't always read over the rules very closely. Mainly becasie I do believe I behave in a manner that would very unlikely be looked down upon by anyone. Can anyone answer this question for me?

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Sure can Buddy.  Your Post is there.  And what a Post !  Admiration and Respect to you.  Anyway,  what you might have done is just clicked back one stage too far.  If you go forwards from the point where you think you posted but it does not show,  you will see you are on the next page.  And no,  don't ever think there is someone who would bin a Post such as yours. 

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It got posted under ' Advice for Prostate Cancer for my Dad ' by another contributor.  This should should show up in your email inbox from now on but I think you have to click on  ' follow this thread ' for anything where you want  automatic follow-up.  Welcome to my world where everything is as clear as mud !

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Dear Elementalist,

I too can't see you post in this thread. 

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Hello Dudley,

Thank you so much for your supportive and encouraging kind words, and hence uplifting a

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Hello Dudley, 

*Sorry for accidentally touch the reply button, iPad is a pain.

Thank you so much for your supportive and encouraging kind words, hence uplifting. Its really appreciated. I can't denied you your expertise in making me cry and laugh, you done it. As usual, I do enjoy your effortless blundering, Dudley. Botanical Garden was one of my favourites sanctuary back then, always love spending time in Singapore.

Oh I feel for you. You indeed made me laugh so hard with your encounter, fortunately I was not in a hospital otherwise I get kick out. How strange, I had a similar experience in Marcopolo hotel but in Hongkong as a guest, but luckyly I ticked a 'No' box. Didn't you manage to use your magic wand back then?  

Just a bit update about Dad today; his condition is stable and started to learn standing up with frame, but not for long. Had dizzy spell. It was thrilled to see. X 

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Dear Elementalist,

Have found your post and replied.

Good luck to you and keep it going for many years to come.

Best Wishes,

Miki 

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Dear Dealwithit, 

I was diagnosed PCa adenocarcinoma T2N0M0 Gleason 4+4=8 late July 2014 with hormone therapy starting three days later because of the intervening weekend. No time lost then. 37 doses of radiotherapy, 74Gy in all to prostate and surrounding tissue. The Urologist had expected some spread to the seminal vesicles. None found by scan but covered by RT anyway. Severe bladder side effect on going and very slowly improving. Moderate side effect to rectum now cleared up - an occasional mild difficulty. Dry skin ongoing. HT  to continue up to  3 years in all. PSA at 6 weeks after end of RT 0.07. Oncologist said that was a good result for the time. Next review by nurse in two weeks. Awaiting new PSA test result.

I hope that helps.

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Hello Miki

Hang in there.  Hopefully your Father will soon regain a little more strength and balance and be able to move around a bit; which will undoubtedly raise both his blood pressure and his morale and also give heart to your  Family.

Thankyou for your goodwill, which is reciprocated.

Please don't forget to look after yourself.

With best wishes

Dudley