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Evening all

User
Posted 19 Jan 2016 at 21:15
Hi there

I have been reading this board for a couple of weeks now but thought I would join officially today after my wife suggested it.

My wife's father was diagnosed with Advanced Prostrate Cancer in mid December after suffering with a bad back since around September time. He originally went to the doctors who sent him away after telling him to take some paracetamol and to do some exercise to lose weight. After a few weeks of pain, I suggested that he visit a chiropractor, which he did and initially the pain eased.

However by late November the back pain became unbearable and he was taken to A&E by my mother in law, and subsequently admitted to hospital. He was seen by a back specialist who X-rayed his back, and then decide that he needed a CT scan and subsequently an MRI.

To cut a long story short, by early December he was diagnosed with having Metastatic Prostrate Cancer, which has subsequently spread to his spine and lymph nodes in his chest. Before leaving hospital in December, he underwent 5 radiotherapy sessions to shrink growths on his spine and chest, and he is on HT treatment (Dagarelix) having had two injections in hospital, one at gp on Christmas Eve and almost due another next week.

He has also been advised to have chemo which he is due to start next week with six sessions, every three weeks.

His back pain is now much better than when he first went into hospital, I suspect due to the shrinking tumours no longer pressing on his spine, but he is still on a lot of tablets every day including morphine.

His PSA was 637 to start with but we are waiting for his latest results which will have hopefully dropped as the original result was prior to his treatment starting. We have never been given a Gleason score, not has he had a biopsy as I suspect he is already past these stages.

I have found this site invaluable so far as it has been difficult to understand what has been going on and my in laws haven't really been asking the right questions of the doctors. My father in law had Bowel cancer 15 years ago which he was cured of and my mother in law initially just assumed this latest cancer was curable. She now understands more but I don't truly think she has accepted the situation, and my father in law hasn't really said much about it at all.

As such, my wife and I have started to attend the hospital appointments where we can so that we have a better understanding of what is going on, although to be honest, neither of us really understand what is going to happen in the future, nor how far advanced his situation really is.

One question that I would like to ask of people on this site is whether the PSA score of 637 is truly high, or is this in the middle somewhere?? I read that normal scores are less than 1, and some people on this site have stated that when diagnosed, they were in double figures. However given my father in laws was in treble figures, I wonder if this gives any idea as to how aggressive the cancer may be? Hopefully we will see a big reduction in the score when we get the results through.

Many thanks

Kev


User
Posted 20 Jan 2016 at 05:54

hi kev
the PSA score will not tell you how aggresive the cancer is mine was 20 but have mets in hip and on both of my sit bones, I would ask if they are able to give a Gleason grade it will not make any difference to the planned treatment but I like to know everything about what is happening to me


asked re my prognosis was told 3 years others on this site have had higher levels and been around awhile, like I said I want to know


I have just finished my last session of chemo(6 in all) of docetaxel, the week of my treatment was
monday; hospital for blood you need to do this at least 24hrs before onco appointment, as they check all blood levels and do a PSA check


tuesday: see oncologist to discuss how I feel and any issues they should be able to tell your PSA score at every visit


thursay: attend hospital for chemo, this can take upto 3hrs or more depends on how busy they are
after each session they give you several boxs containing steroids, one 2x a day to be taken everday for 3 week the other is to be taken 24hrs prior to next session, also was given some antisickness tablets not needed these till this last week


how is your father in law doing on night time loo visits, if these are still an issue ask about some tamsolosin they will help but may take a week before they do I find taking mine 2pm ish helps same as for the steroids, as they can give you insomnia
had days when I have been up at 1am


our hospital allowed only one person to attend with you, mid day appointments take a snack with you as you may get a hospital sandwhich only, nothing for anyone with you, also something to read, tv's may be in the ward
I was given a notebook with all my blood levels in, also in the back you can make notes I log my PSA level and how I felt with each session


it is straight forward nothing to worry about the side affects will be different for each person, my worst week has been this last one


trouble with PCa we will all react differently to what is given us, the nurses told me I dont realise how well/good I have dealt with the treatment


I also asked for all my test result to be sent to my GP whom when I visit will print off a copy for me, dont say I undestand the medical jargon but find it useful to have


hope some of this helps


regards
nidge


regards
nidge


 

Edited by member 20 Jan 2016 at 05:56  | Reason: Not specified

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 20 Jan 2016 at 08:37
Hi Kev

I have metastatic PCa aged 50, my PSA was 342 on diagnosis, some have it in the thousands. After RT and chemo my PSA dropped to 0.38 so the treatments do usually work.

Download the tool kit from this site and get your in laws to write down all the questions they (you) want to ask and then make sue that they write down the answers. One thing I have learnt in my 15 months of PCa is that we are all different so there is always hope no matter what the scores are, staying as fit as possible and eating a healthy diet are considered to be generally good to fight the disease and keep it as bay for as long as possible.

Post any questions you have here, there are lots of people who have experienced most things or seen other halves go through it.

Kev

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 20 Jan 2016 at 09:12

Hello Kev and welcome.


Your first couple of paragraphs echo what happened to my husband. He was only diagnosed because he hurt his back,but fortunately for us it was caught early.


I can't offer advice on your dad in laws treatment but Kev and Bladerunner have said how it is for them so I hope that helps.


Try not to do general googling as sometimes the information is not relevant and can be scary.


If you need an answer speedily and there isn't anyone available on the site then ring the specialist nurses on here and they may able to help.


All the best. You father in law is lucky to have a caring daughter and son in law.


 

Edited by member 20 Jan 2016 at 09:13  | Reason: Not specified

We can't control the winds - but we can adjust our sails
Show Most Thanked Posts
User
Posted 20 Jan 2016 at 05:54

hi kev
the PSA score will not tell you how aggresive the cancer is mine was 20 but have mets in hip and on both of my sit bones, I would ask if they are able to give a Gleason grade it will not make any difference to the planned treatment but I like to know everything about what is happening to me


asked re my prognosis was told 3 years others on this site have had higher levels and been around awhile, like I said I want to know


I have just finished my last session of chemo(6 in all) of docetaxel, the week of my treatment was
monday; hospital for blood you need to do this at least 24hrs before onco appointment, as they check all blood levels and do a PSA check


tuesday: see oncologist to discuss how I feel and any issues they should be able to tell your PSA score at every visit


thursay: attend hospital for chemo, this can take upto 3hrs or more depends on how busy they are
after each session they give you several boxs containing steroids, one 2x a day to be taken everday for 3 week the other is to be taken 24hrs prior to next session, also was given some antisickness tablets not needed these till this last week


how is your father in law doing on night time loo visits, if these are still an issue ask about some tamsolosin they will help but may take a week before they do I find taking mine 2pm ish helps same as for the steroids, as they can give you insomnia
had days when I have been up at 1am


our hospital allowed only one person to attend with you, mid day appointments take a snack with you as you may get a hospital sandwhich only, nothing for anyone with you, also something to read, tv's may be in the ward
I was given a notebook with all my blood levels in, also in the back you can make notes I log my PSA level and how I felt with each session


it is straight forward nothing to worry about the side affects will be different for each person, my worst week has been this last one


trouble with PCa we will all react differently to what is given us, the nurses told me I dont realise how well/good I have dealt with the treatment


I also asked for all my test result to be sent to my GP whom when I visit will print off a copy for me, dont say I undestand the medical jargon but find it useful to have


hope some of this helps


regards
nidge


regards
nidge


 

Edited by member 20 Jan 2016 at 05:56  | Reason: Not specified

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 20 Jan 2016 at 08:37
Hi Kev

I have metastatic PCa aged 50, my PSA was 342 on diagnosis, some have it in the thousands. After RT and chemo my PSA dropped to 0.38 so the treatments do usually work.

Download the tool kit from this site and get your in laws to write down all the questions they (you) want to ask and then make sue that they write down the answers. One thing I have learnt in my 15 months of PCa is that we are all different so there is always hope no matter what the scores are, staying as fit as possible and eating a healthy diet are considered to be generally good to fight the disease and keep it as bay for as long as possible.

Post any questions you have here, there are lots of people who have experienced most things or seen other halves go through it.

Kev

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 20 Jan 2016 at 09:12

Hello Kev and welcome.


Your first couple of paragraphs echo what happened to my husband. He was only diagnosed because he hurt his back,but fortunately for us it was caught early.


I can't offer advice on your dad in laws treatment but Kev and Bladerunner have said how it is for them so I hope that helps.


Try not to do general googling as sometimes the information is not relevant and can be scary.


If you need an answer speedily and there isn't anyone available on the site then ring the specialist nurses on here and they may able to help.


All the best. You father in law is lucky to have a caring daughter and son in law.


 

Edited by member 20 Jan 2016 at 09:13  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 20 Jan 2016 at 21:55
Hi Kev,
Welcome to our world so I am not going to sugar coat this but yes 637 is high but I think to be honest you knew that already. So here you are thrown into the confusing world of proastate cancer. Firstly well done you for helping your FIL ( that's short for father in law) you will get used to all of the abbreviations, it is like a whole new language. A bit like texting without teenagers.😉
The fact that chemo has been offered is very good although in your FIL situatuation no it is not curable but some of the story's on here will give you hope and an insight into how every case is unique .
I don't want to brag (all of the oldies are know thinking OH here she goes again) but Trevor's starting PSA was 12940 yes you did read that correctly, I sometimes boast and say 13000 but that is just me showing off. Point being that was way back in May 2013 and here we are nearly 3 years on. We have pretty similar bone mets , spine, ribs , pelvis, shoulder and lymph nodes we also didn't have a biopsy.

3 years ago Trevor was barely able to stand , today he is trying to lift flooring ready to fit a stud wall( I have to say he is not a builder ) and it probably won't go as planed but he feels well enough to try. So I hope this gives you some intsight onhow varied and different this disease can be.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 20 Jan 2016 at 23:05

Thank you all for your replies. The FIL has his third HT injection tomorrow, hospital on Monday for blood tests and onco appointment, and 1st chemo session on Wednesday. He must be in good spirit still as he was more worried about losing his hair than the effects of the chemo!!! Despite being 69 he does have a full head of dark hair unlike myself at just 43 - bald and grey!!!

Thanks all

Kev

User
Posted 21 Jan 2016 at 08:58

Has anyone advised FIL to suck on cubes of frozen pineapple during the infusions? It helps to reduce the awful side effects in the mouth - ulcers and the problem of all food tasting of metal :-(

He could also ask at the chemo suite about a cold cap to protect his hair - some hospitals loan them, some don't. My FIL swore by his although many people find them far too uncomfortable

Edited by member 21 Jan 2016 at 09:00  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Jan 2016 at 11:45
Kev
Hi and welcome, it is good that you and your wife are helping your Dad and Mum to understand a little better what is happening right now. Having dealt with one cancer successfully it is a cruel blow to then be diagnosed with another,this time, incureable one. No wonder they are taken aback. Your support will be invaluable. There are many men on this site who have been living with advanced metastatic PCa for much longer than the statistical average. I think the record I have seen so far is 14 years!

Treatments and the way they are used can change quite quickly as more and more trials are showing very good results, also new drugs are becoming approved and even more trials are up and running for others as they are being developed.

Just a couple of things, as you say a biopsy may have been discounted as the disease had already progressed past a point where a sometimes uncomfortable procedure was considered necessary.

I am not an expert at all but I am fairly sure a Gleason score can only be properly arrived at from the samples taken in a biopsy or from a completely removed prostate. I suppose an Oncologist or Urologist could best guess without one but it really is of no relevance now.

You asked if PSA in 3 figures is common at diagnosis and the answer I would give there is yes it is fairly coomon when the disease is only diagnosed at an advanced stage. It is a measure of an androgen that is given out when PCa is active, generally speaking the higher the figure the more active the cancer is at that time. So when there are multiple tumours as in your FIL's case if they are active then the figure can be high. The good news as others have said is that this can drop quite dramatically when treatment starts and then if that treatment continues to work it can drop even further as the cancer is slowed down or even stopped in its tracks for a while.

The realtively early chemo your FIL is getting is the new gold standard treatment alongside the HT he has already started on.

Im sure others will come along and give your more great chemo tips as Lyn already has regarding pineapple cubes and the ice cap.

Last thing I would say is don't despair if the first pre chemo PSA test seems disappointing, just occasionally the cancer gets a bit narked when an alien like HT comes along to threaten it, and in some cases it can go up a bit before it starts to come down. That pre chemo blood test is more about getting a baseline for other important blood factors and not so much about the PSA.

I wish you all the very best

xx
Mo
User
Posted 21 Jan 2016 at 13:36

Hi Kev


Wishing you and your FIL and family all the very best. 


Lots of good advice above. I have a very similar diagnosis to your FIL  with wide spread bone mets and lymph node.


I have just started chemo..docetaxel, I would think your FIL will be on the same. Good news I would say is that chemo is not as bad as you might think, in my case anyway. I am on the same 3 week regime and definitely had a couple of tired days in the week after treatment, but quite bearable and I am enjoying a whiskey right now :)


I think in some ways it can be harder for the support group than the patient, stay strong,  and its a cliche , but appreciate each day for what it brings. Metastatic PCa does not have a cure, but in some ways that makes things easier and I find I can concentrate on enjoying the moment.


Again best wishes and I look forward to more updates


 


Martin

"And Rocky said, doc it's only a scratch. And I'll be better, I'll be better doc as soon as I am able"
User
Posted 27 Jan 2016 at 16:35
FIL had his first chemo session today and seems to be ok so far although I appreciate its a bit early! He had a cold cap as he is worried about losing his hair and he said this was worse than the chemo itself - not sure he will have it next time but he is very attached to his full head of hair!!

He did have Docetaxel I believe and had a huge bag of tablets to take home with him, on top of what he is already taking. Other good news is his latest PSA is down to 8 following his initial score of 600+ so hopefully the next result will see a further drop.

Three weeks break now till next session.
User
Posted 27 Jan 2016 at 16:50

good to hear hope it continues, if he gets hair loss have been told it grows back ok

regards
nidge

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 27 Jan 2016 at 22:47

Hair does grow back and usually very well. My daughter in law ended up with a beautiful head of dark curly hair. I had only ever seen it dyed so I was surprised at how pretty it was.


No satisfying us ladies of course. She's back to dyeing and straightening it!


I have heard that the cold cap need perseverance as it is so horrendously uncomfortable.


Of course, for a man, it is quicker to show a full head of hair since in general a man's hair is shorter anyway.


I hope FIL continues to get the drop in PSA and that he copes with the chemo

Edited by member 27 Jan 2016 at 22:47  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 02 Feb 2016 at 22:20
Hi everyone, My father is in a similar position he has advanced prostrate cancer with spread to spine and pelvis. Had psa if 60 and gleason of 8. He is only 54 so everyone was a bit shocked that it had spread so far. He has just started HT (firmagon) and we are waiting on an appt to see oncologist re chemo. He is still in a lot of pain in his back/chest (possibly due to tumor on spine) and cant sleep. Hoping the HT kicks in and starts to help soon. Any other advice or ways i could help him?

This site has been of great use and comfort during the last few weeks. Thank you all so much.
User
Posted 02 Feb 2016 at 23:19

Hello Butterfly and welcome.

They'll be quite a bit of information coming your way regarding both HT and Chemo as a number of men are or have been on it.

If he does end up with chemo then I understand that sucking sticks of cold pineapple helps to reduce/prevent mouth ulcers etcc which can be caused by the chemo.

Does your father take anyone with him for the appointments as it's a lot for one person to take in. A notebook and pen to write down answers also helps.
Good luck and best wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 03 Feb 2016 at 00:16
Hi Buterfly,
I would suggest that you start your own thread (conversation) you will get more answers and direct comments that way. People are more than willing to help and advise but may not see your post on someone else's thread. Welcome anyway. You can give it your own title it does take around 24 hrs for a new thread to be added so don't worry if you don't get replies immediately .
We also have spread there are lots of us on here , sometimes it takes awhile for the HT to help reduce the pain .
I hope this has helped.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 03 Feb 2016 at 10:27

Hi


If it's any help my OH had 10 doses of Docetaxel and although the hair on his head got a bit thinner and stopped growing it didn't fall out. I don't think anyone would have known he was on chemo. However he did lose most of his body hair and was delighted not to have to trim his nose and ears for a while!


Hope all goes well with the chemo.


Rosy

User
Posted 17 Dec 2018 at 23:00

Evening all


 


Well its been three years since I started this post and I havent updated much during that time but have been a regular reader of other posts.


 


Thankfully its been fairly straight forward for my FIL over this time. He had his chemo treatment as I mentioned back at the start of this thread, and has since been through all of the various drugs and treatments that the onco’s have to treat this cruel disease. 


 


He’s been in and out of hospital a few times, and had a stent fitted to help his bladder when a tumour pushed on his urethra.


 


Unfortunately today he has been taken off his latest chemo sessions after 7 treatments ( cabazitaxel) as it has not been working, and he has not been very well on it, with sever nausea, loss of appetite and weight loss. His PSA is 30, down from 70 at the start of the latest chemo treatment but no longer falling. He also had an overnighter in A&E due to low white blood cells and concern that he had sepsis, which he didnt.


 


So, he has today been told that he can be referred to the Royal Marsden to see if they have any new treatments that he can try, and he has until January to decide. I get the feeling though that he has now reached the end of the conventional treatments that the Oncologists can offer, and my MIL told us that the oncologist was going to arrange for a McMillan nurse to visit and see what they can do for him, presumably in terms of getting about, making the house suitable etc - his movement is now bad and he struggles to walk short distances. 


 


I was wondering whether anybody on this site had been referred to the Royal Marsden for further treatment? unfortuntately I was unable to attend the meeting today so not sure exactly what was said, but I do wonder what the likelihood is of there being further trials available that he could go onto. From the research that I have undertaken about the relevant courses of treatment, I have not found much information about treatment after the Cabazitaxel course of chemo (which he has now been taken off of).


 


Anyway, Christmas to look forward to and we can worry more about what next in the New Year. A Merry Christmas to you all. 


 


 

User
Posted 18 Dec 2018 at 16:55
Further docetaxel is certainly an option after cabazitaxel, if the patient is strong enough to take it. I was and did. The Marsden is probably the best place to pick up on trial possibilities, though. You should be in good hands there!

AC
 
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