[Bone mets and pain] Very long trip - What’s next ?

Hi all,

Despite the fact I almost never posted I read this forum since some years – the first thing I want to say is that you are all fantastic in supporting others and in gathering and sharing info. I’m Italian and I live in Italy – forgive me for my broken English.

I write here for my father - he is 78 with a 14 years PC history. Not an easy journey but at least manageable with good quality of life. Incontinence was a problem, the HT and the PSA checks, then the fear of the chemo. Zytiga was like fresh air after the months under chemo.
I’ve never been happy about all these things but I’ve never felt lost – at least not like in the last two weeks.

It seems my father is approaching the next level - bone mets and especially PAIN are the newcomers. It started with some pain in a leg treated as not PC related disease for a couple of weeks but then the TC and the discover of the bone mets … we waited a week (very long week) hoping for a RT session that was just a visit (matter of setting expectations don’t want to blame doctors. Onco who send us there was pushing for immediate treatment the one in charge of treatment postponed to next week and further evaluation). This RT + pain therapy is what will be the very next days/weeks therapy.

Treatment availability in Italy maybe different from the US … consider at least 2/3 years shift from when you have things there compared from when they are available here.

I don’t want to give up – we hope RT to be a quick fix for the pain (will work ? how long ?) and looking forward for other opportunities. Onco told my parents Zytiga is not working anymore and that he has just another shot ( I guess Xtandi - I was not at the visit). Drugs approved in Italy and still not used from my father are Xtandi and Xofigo (note that approved and immediately available may be different concepts).
I booked a visit with a another oncologist that work in one of the biggest center for cancer treatment that already saw my father two years ago – it’s for next wed. It’s a visit out of the public insurance so I got it quicker (few days – not a concern) but basically I can take the papers and not my father …it’s 120km roundtrip with some traffic so not good for him in these days.
Currently my father is followed in relatively small center few miles away from where we live – it’s good and there are pros compared to big centers but not all options are available.

Comment / suggestion / question / whatever is welcomed.

Luca

--
My father - Age 78

DX in 2000 at 64 years old. PSA 2.3.
Radical Prostatectomy 07/2000
Gleason 3+3, pT3 N0
Recurrence and then salvage radiation in 2003
Hormone Therapy : several (decapeptyl / casodex / firmagon)
09/2011 become castrate resistant PSA 18
03/2012 PEC/TC show limps mets ~20mm (not sure if it’s the right definition)
05/2012 PSA 18 Not willing to start chemo – Still on HT even if less effective
08/2012 PSA 18 - 08/2012 PSA 26 – 11/2012 PSA 45
12/2012 Start Taxotere (weekly – beginning with 12 shots .. then some pauses)
01/2013 PSA 52 – 3/2013 PSA 11
04/2013 reduced lymps size.
06/2013 Stop Taxotere - PSA 6.73
12/2013 Start Cabazitazel – PSA 39
02/2014 PSA 87
04/2014 PSA 132 - Stop Cabazitazel – Start Zytiga
07/2014 PSA 154

10/2014 TC confirmed Bone Mets (several in the spine and pelvis - it was just a partial TC ..ther e could be others) - PSA 266

Pain not easy manageable - waiting to RT for the bone mets (still missing a date – supposed to be today but we got just a visit and we will be cal back next week)
For the pain and bone mets added : dexamethasone + painkillers (stong)

Post Edited (Luca99) : 10/17/2014 6:14:52 PM (GMT-6)

Welcome to Healing Well Luca. My wife has family in Luca, Italy so not sure if you are in that area. I would suggest googling Dr. Snuffy Meyers and see if you can pull up his videos and there are a couple recent videos on dealing with bone mets. I did have Mets and pain but the hormone therapy must have helped as my last bone scan came back clear. However my psa went from .03 to .5 so I continue to take casodex and most likely will have to have another shot of eligard in December. Hope some of the others will chime in soon and you can always search for other posts on mets and pain by typing those words into the search right underneath Join Healing Well on top of this page. Keep us posted.
Michael

I didn't notice a difference with 10 days of radiation to the spine....or one full round of Xofigo.....the only thing that relieves my pain are Oxycontin every 12 hours and I use quick release Oxycodone with it as well.

I noticed most all my bone pain happens at night...or when I lay down. I normally take 2-3 quick releases at night 1 hour before bed and still usually wake up 4 hrs later because of pain or uncomfort. Its not the most acute pain.....just never goes away and is very irritable. Keeps you tossing and turning all night trying to find a comfortable position....They are still experimenting with the Oxycontin as you have to start with a small dose and go from there so it takes time. They offered my the patch but I declined.....maybe if it gets worse I may go that route. Not sure what kind of pain meds your father is on...if any.

They are kinda cautious handing out narcotics here as it is a narcotic....but so far Ive had no issues.....they just cant give you a long term prescription and have to give a new one monthly as its so controlled here.

I find that getting up and going for a slow walk will also ease my back/bone pain a lot.....not that I like walking around at 2 A.M. but I do live in a very safe and small community so I do it all the time. Good luck with the pain treatments....I don't feel the 2 radiation treatments I had did much good but everyones different.

Four RT sessions done and six still to go. As of now no improvements in the pain. Doctor also suggested to step back from dexamethasone ( cant be used too long) to the previus lighter drug.

Added a scheduling for pain management - starting tomorrow ( had to push a little cause 1st appontment was given end november )

After visit with big hospital onco he suggested xtandi as next drug also in consideration of radium 223 shortage ( this was the first choiche).
Bad news from the small hospital onco that is following my father - he stated nor xtandi or radium 223 are available and he is suggesting extramustide (Xtandi IS available in my country but since the procedure is still to be finalized you have to follow some burocracy to get it - ok for the first doc, not ok for the second one ).

This is a roadblocker - moving my father where he can get xtandi is really a problem - getting that drug here almost impossible.

Looking for solutions.

Anyone has experience with extramustide? In my understanding it is somehow an old drug not used that often these days. Also side effects of another chemo at this stage are matter of concern.

Post Edited (Luca99) : 10/30/2014 6:55:51 PM (GMT-6)

Hi Luca,

I am not the patient, my husband is. He has a lot of pain but we are not sure how much is from bone mets. When he was on dexamethasone it was the best he felt ever. He now has strong narcotic pain medicine but tries to take as little as possible.

I do hope your father gets control of his pain and has some comfort. Have they thought of doing nerve blocks?

We had a visit with the other onco - I miss the english for the head of oncologic dept of an hospital. Useless. I was looking for support in getting enzatulamide and radium223 but we got nothing. Enzatulamide is still not availble under the state insurance coverage and also not a god choiche cause zytiga failed ... Radium 223 she was not aware of.

Re my Father :
RT ended almost 10 days ago. Pain improved. Still not able to stand up on his legs... the max he can do are a couple of tour around the table alwasy with some support.

The new therapy (an the ONLY available one) is extramustine.started yesterday.

Let's see ... not happy still thinking it's not the best therapy available :(

Thanks for the update Luca. Will keep you and your Father in thoughts. Hoping he can beat the odds and have several more quality years! If not, as you said, hope the pain is minimal, and that he is surrounded by friends and family and love. Best of luck, and please keep us updated!

Thanks for the kind words.

We are going to exploit any good moment we have taking him at home with his family. That's the best place in the very short term.

Hospice is on the list of things to explore - it's more about understanding time needed to get there or other options (they can follow you at home). I need to wait next week when the onco will be back from holiday.

L.

My father passed away Sunday evening in the hospital. At 9 pm my mother called him by phone and he was fine … weak even to say more than few words but lucid and ok. At 11:00 PM I got call from the hospital he was getting worse … we rushed there in less than 30 minutes. We have been told he died 10 minutes before… true or false … he was still warm. He did not have pain, at least when he passed away. Sleeping, breathing problem, not answering if called or touched and in few minutes was gone.

It’s an incredible sadness. My daddy is not more here.

The rest of the post explains how someone could die … not sure if anyone wants read these info… stop here in case…


having him back home on Friday 25 August the bleeding bladder continued and we were forced to take him back in the hospital on Monday September 1st. He was taken in charge to the urology section and had a little surgery (endoscopy to stop the blending from the bladder) with doctors positive at least in short term stabilization…. bleeding reduced but again back after a day.
The explanation was that platelets number was low (and platelets are produced from the spinal cords so if you have bone mets you may have also this...). Again transfusion specific to platelets were done again, again with the hope to stabilize the situation. My father was weaker and weaker, sleeping most of the time but always 100% lucid. Saturday night he threw out a little blood from nose and mouth … doctors more worried but still confidents in platelets infusion. Sunday night he started sleeping, started to have problem in breathing, doctor already had increased oxygen.
The doctor there told us she was alerted that breathing was problematic, not having any reaction from the increase in oxygen, having my father not responding at all and breathing always less she gave him a morphine injection and called us. The time to call us my father was died.
The doctor was very kind and sweet she spent half an hour with us, telling about the last moment and answering any question we may have (I ask this cause we had bad experience with other doctor few day before). I asked which specific situation lead to the death …if have been the lungs with mets. She told me not said … there we sign of hepatic issue, kidneys not completely ok, platelets down to 20k, mets in lungs … a so complicated condition that also the heart may have just stopped beating. This to say that there were no possible actions to save/extend his live available in these last days/weeks.

Post Edited (Luca99) : 9/8/2015 3:27:55 PM (GMT-6)

Very sad news.

Condolences on your loss.

Peace,
Andrew

Sincere condolences to you and yours...

From David, in Tennessee

Post Edited (island time) : 9/8/2015 4:39:41 PM (GMT-6)

Luca, I never saw this thread till now, and just read through from the beginning. And so very sad to read your last post.
Your father was lucky to have you. May he rest in peace, and may you have comfort knowing he is no longer suffering as he was.

By the way I have spent a lot time in your country, specifically in Prato, (thus my screen name) and it is beautiful.

But where your father is now, is even more so
Peace to you and your family

I'm very sorry to hear of your father's passing Luca.

Condolences to you and your family.

RIP