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Dad's Advanced PC diagnosis

User
Posted 02 May 2018 at 11:18

Hello, 

 

10 years ago my Dad had a stroke from a car related incident - he spent a few months in hospital and a rehabilitation centre but he regained the full use of his left side. He is now age 57 and a few months ago he started getting a sore knee and thinking it was time for a knee replacement he went and got an MRI. The MRI showed he has lighter bones with marks on them and the doctor immediately sent him to hospital for CT. 

CT scan showed that prostate cancer has metastasized to his bones and is in his ribs, sternum, spine, femur, hips, pelvis and shoulder (basically everywhere). His PSA was 941 and they started him on hormone treatment. His biopsy results have come back and it is advanced prostate cancer, grade 5, Gleason Score 9 (5+4). He has responded to hormone treatment (PSA now 221) and he has been told to start Chemo right away with an appointment with oncologist next week. 

We know it is incurable but it would be really good to hear from some of you who are this far along to see how you are coping and what treatments have / haven't worked and how you are managing your pain or just general advice. 

User
Posted 07 May 2018 at 21:55
I was diagnosed May last year. Widespread through bones, no cure. Aged 60 when diagnosed. PSA 129 Gleason 9 but still here. Treatment working as it should PSA <0.01and ran London marathon 2 weeks ago. Staying positive and hope you can
User
Posted 07 May 2018 at 22:13
Hi ladies

Just to let you know that my hubby was diagnosed with advanced Pca in Dec 2010, Gleason 10, spread to bones and lymph, he’s still here and finally having chemo. Nearly eight years for a Gleason 10 is great so fingers crossed for you too.

Love

Devonmaid xx

User
Posted 02 May 2018 at 15:59

Look up member Si_ness - he  has extensive bone mets, was offered early chemo and has done very well. 

Also look for Trevor_boothe. He was diagnosed with extensive bone mets and a PSA of 13000. He is no longer with us but survived for 5 years, almost a walking miracle considering his starting point. 

The point is that even with the worst diagnosis imaginable, some men are still here and feeling well for many, many years. Sadly, for some it is true that no treatment works but these tend to have one of the rarer types.

 

*Amended - I somehow muddled my friends Si and Kev up!!!! Put it down to extreme train travel :-/ 

Edited by member 02 May 2018 at 18:35  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 May 2018 at 03:45

Hi K4lly,

 

I'm sorry to hear about your father. I am finding this forum really helpful for tips on treatment but also just to know we are not alone on our journey. We thought dad's stroke would be his hardest challenge and never imagined anything like this would happen! Oncologist appointment is on Thursday so I will let you know how it goes. 

 

Sending positive thoughts your way :)

User
Posted 10 May 2018 at 10:57

Hi all, 

Thank you all for your inspiring stories, definitely helps increase my positivity! 

We saw the oncologist today. Dad's cancer has followed the typical pattern, spread from prostate to the nodes then to the bones. It is all over his bones with "too many lesions to count". He is responding to the hormone injection (Zoladex) and he now has to decide if he wants to do chemo (docetaxel) or a hormone treatment (zytiga). I will certainly be researching those over the next few days. Because of his stroke, he is not very good with balance and already tends to fall a lot so they are very concerned about the effects of treatment on his balance and the risk of breaking bones. In the meantime he has been put on the wait list for chemo and will be having a bone density scan and ultrasound on his kidneys. 

Today was hard for him as it was the first time he's realised how serious it is but I keep telling him all your stories and how well you are all doing. I'm very glad I found this community, really inspiring and so helpful. 

User
Posted 02 May 2018 at 11:18

Hello, 

 

10 years ago my Dad had a stroke from a car related incident - he spent a few months in hospital and a rehabilitation centre but he regained the full use of his left side. He is now age 57 and a few months ago he started getting a sore knee and thinking it was time for a knee replacement he went and got an MRI. The MRI showed he has lighter bones with marks on them and the doctor immediately sent him to hospital for CT. 

CT scan showed that prostate cancer has metastasized to his bones and is in his ribs, sternum, spine, femur, hips, pelvis and shoulder (basically everywhere). His PSA was 941 and they started him on hormone treatment. His biopsy results have come back and it is advanced prostate cancer, grade 5, Gleason Score 9 (5+4). He has responded to hormone treatment (PSA now 221) and he has been told to start Chemo right away with an appointment with oncologist next week. 

We know it is incurable but it would be really good to hear from some of you who are this far along to see how you are coping and what treatments have / haven't worked and how you are managing your pain or just general advice. 

User
Posted 02 May 2018 at 16:01

PS the hormone treatment should reduce the pain quite quickly.

Edited by member 02 May 2018 at 18:35  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 May 2018 at 20:16

They may decide to give him Zometa to help with bone strength, but that also has its side effects.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 May 2018 at 20:18
Thanks for your pm Kate and the info provided. V much appreciated.

It wouldn’t let me reply to your pm as it said I haven’t participated in enough conversations yet!

Show Most Thanked Posts
User
Posted 02 May 2018 at 15:59

Look up member Si_ness - he  has extensive bone mets, was offered early chemo and has done very well. 

Also look for Trevor_boothe. He was diagnosed with extensive bone mets and a PSA of 13000. He is no longer with us but survived for 5 years, almost a walking miracle considering his starting point. 

The point is that even with the worst diagnosis imaginable, some men are still here and feeling well for many, many years. Sadly, for some it is true that no treatment works but these tend to have one of the rarer types.

 

*Amended - I somehow muddled my friends Si and Kev up!!!! Put it down to extreme train travel :-/ 

Edited by member 02 May 2018 at 18:35  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 May 2018 at 16:01

PS the hormone treatment should reduce the pain quite quickly.

Edited by member 02 May 2018 at 18:35  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 May 2018 at 22:22

Hi Lyn, 

Thanks so much for letting me know about Trevor and Si_ness. Huge relief to hear they had so much time!

User
Posted 04 May 2018 at 06:50
Hi

Found out yesterday that dad (just had his 64th birthday) has advanced PCa Stage 5, Gleason score 9, PSA at last blood test (April 2018) 103, has bone mets pretty much everywhere (apart from legs) including possibly liver. Plan of action is hormone therapy and chemo.

Will follow ur post Kate as really need advice n views on treatments as had no awareness of PCa-all I knew is that it’s something that happens to men! Feel so distraught as not for one minute did I think dad would have cancer. Just feel overwhelmed and like my heads gonna explode. :(

User
Posted 06 May 2018 at 03:45

Hi K4lly,

 

I'm sorry to hear about your father. I am finding this forum really helpful for tips on treatment but also just to know we are not alone on our journey. We thought dad's stroke would be his hardest challenge and never imagined anything like this would happen! Oncologist appointment is on Thursday so I will let you know how it goes. 

 

Sending positive thoughts your way :)

User
Posted 07 May 2018 at 21:55
I was diagnosed May last year. Widespread through bones, no cure. Aged 60 when diagnosed. PSA 129 Gleason 9 but still here. Treatment working as it should PSA <0.01and ran London marathon 2 weeks ago. Staying positive and hope you can
User
Posted 07 May 2018 at 22:13
Hi ladies

Just to let you know that my hubby was diagnosed with advanced Pca in Dec 2010, Gleason 10, spread to bones and lymph, he’s still here and finally having chemo. Nearly eight years for a Gleason 10 is great so fingers crossed for you too.

Love

Devonmaid xx

User
Posted 10 May 2018 at 10:57

Hi all, 

Thank you all for your inspiring stories, definitely helps increase my positivity! 

We saw the oncologist today. Dad's cancer has followed the typical pattern, spread from prostate to the nodes then to the bones. It is all over his bones with "too many lesions to count". He is responding to the hormone injection (Zoladex) and he now has to decide if he wants to do chemo (docetaxel) or a hormone treatment (zytiga). I will certainly be researching those over the next few days. Because of his stroke, he is not very good with balance and already tends to fall a lot so they are very concerned about the effects of treatment on his balance and the risk of breaking bones. In the meantime he has been put on the wait list for chemo and will be having a bone density scan and ultrasound on his kidneys. 

Today was hard for him as it was the first time he's realised how serious it is but I keep telling him all your stories and how well you are all doing. I'm very glad I found this community, really inspiring and so helpful. 

User
Posted 10 May 2018 at 20:16

They may decide to give him Zometa to help with bone strength, but that also has its side effects.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 May 2018 at 20:18
Thanks for your pm Kate and the info provided. V much appreciated.

It wouldn’t let me reply to your pm as it said I haven’t participated in enough conversations yet!

User
Posted 13 Jul 2018 at 18:27

I've come on here a few months later than this original post.  You can look-up my story under user name CuriousCharles.  

My original diagnosis at age 65 in November 2013 had a PSA of 5,006.   I've survived a little over 4.5 years, so far.  (I live in California, USA, but try to respond to very high PSA folks from wherever they may live in the world.) 

Hope you all have been doing better, lately.

Charles

 

Edited by member 13 Jul 2018 at 18:29  | Reason: typo

User
Posted 22 Jul 2018 at 19:59

 sorry to hear about your dad. My dad is awaiting a bone scan. Did your dad feel any bone pain before being diagnosed or was it a complete shock?

User
Posted 12 Jan 2019 at 08:58

Hi Chesca,

Sorry for the huge delay in replying, some days it's nice to 'forget' that dad isn't sick. He did feel bone pain, mostly in his knee, but he thought it was just a needed knee replacement due to his walking being different since his stroke (he walks with a limp). It's been nine months since diagnosis and he still doesn't seem to believe he has cancer.

User
Posted 13 Jan 2019 at 15:11

Got my 6th and final chemotherapy infusion (docataxel) tomorrow. In preparation had my second lot of dexamethasone steroids earlier and have been bouncing round the house, done a bit of painting and going out for a meal with friends later. Probably be up as usual at 4.30am as dexamethasone steroids and sleep don't mix but can always come on here and converse with John (Bollinge) who is usually around at that hour!
Downside on the chemo for me are days 3-8 after the treatment with severe fatigue and feeling generally s**t but by day 10 I've felt okay again. Not been or felt sick but have piled weight on during chemo, up from 12 stone to 13.5.
Next job is to wean myself off another steroid prednisolone, I've been taking 2 a day since 2 October so I plan to take 2 a day for 14 days, 1 a day for 7 days then 1 every other day for 7 days, fortunately I've enough to do this without having to ask for permission and extra tablets.

As ever waiting with bated breath for tomorrows PSA score, if it's gone down again I'll be elated, if its around the same or gone up I'll be gutted.

John

Edited by member 13 Jan 2019 at 15:17  | Reason: new

User
Posted 13 Jan 2019 at 15:22
John I can't think why you posted this on this thread. It doesn't relate at all. Have you started one of your own?

AC

User
Posted 14 Jan 2019 at 16:39
Thought Kate was asking about treatment including Chemo for her dad, I was merely giving my take, if it's irrelevant blame it on the steroids.
 
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