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Father, 76, just diagnosed with Advanced PC. Any wisdom appreciated

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User
Posted 05 Jul 2019 at 18:34

Hello.  Just joined the community, as my Father, aged 76 just diagnosed yesterday with High Risk, High Grade Prostate Cancer.  Gleason 9.  PSA at diagnosis, 305.  Multiple tumours found in lymph nodes in Pelvis, but as yet no bone Mets and no mets in organs.  Doctor has given a likely prognosis of 18-24 months survival, but with  likely additional 2 year survival if he has 6 sessions of chemo upfront.  Is on Prostap hormone treatment already.

Is feeling healthy (no co-morbities) but gone into a big depression after diagnosis yesterday (not helped by the Nurse who broke the news showing no empathy or signs of hope)

i am supporting him in every way, but would so much welcome any wisdom or comments from the community, as we start this journey - E.g. Is chemo worth the benefit over the possible side effects? Anyone with similar diagnosis beating the 4 year life expectancy we have been given?

Father diagnosed post scans and biopsy, after presenting with urinary symptoms.  Trangically, Neither my Father or I knew about PSA testing, and the doctors never offered such a test/screen to him, to catch him early.  This is something I am finding hard to come to terms with (feel that I, his GP, and NHS have let him down)

Getting my 1st PSA test on Friday, as know now I am high risk too

Thanks

Alun

User
Posted 05 Jul 2019 at 18:34

Hello.  Just joined the community, as my Father, aged 76 just diagnosed yesterday with High Risk, High Grade Prostate Cancer.  Gleason 9.  PSA at diagnosis, 305.  Multiple tumours found in lymph nodes in Pelvis, but as yet no bone Mets and no mets in organs.  Doctor has given a likely prognosis of 18-24 months survival, but with  likely additional 2 year survival if he has 6 sessions of chemo upfront.  Is on Prostap hormone treatment already.

Is feeling healthy (no co-morbities) but gone into a big depression after diagnosis yesterday (not helped by the Nurse who broke the news showing no empathy or signs of hope)

i am supporting him in every way, but would so much welcome any wisdom or comments from the community, as we start this journey - E.g. Is chemo worth the benefit over the possible side effects? Anyone with similar diagnosis beating the 4 year life expectancy we have been given?

Father diagnosed post scans and biopsy, after presenting with urinary symptoms.  Trangically, Neither my Father or I knew about PSA testing, and the doctors never offered such a test/screen to him, to catch him early.  This is something I am finding hard to come to terms with (feel that I, his GP, and NHS have let him down)

Getting my 1st PSA test on Friday, as know now I am high risk too

Thanks

Alun

User
Posted 05 Jul 2019 at 21:50

I'm not really qualified to give advice Alun but you do raise an interesting point about screening. As I understand it, the PSA test has limitations in diagnosis - it is far more valuable post treatment to measure success or otherwise. In my case I asked for a PSA test because my father died of Pca at 57 and my older brother was diagnosed back in late 2012. My PSA was raised (just over 7) and even then the advice was there may be nothing wrong (I had no symptoms whatsoever but I did have the family history) and it might be BHP (a benign enlargement of the prostate). To be fair to the NHS they did leap into action with biopsies and scans almost immediately which lead to a diagnosis of Pca.

I think I'm right in thinking that unless there are symptoms or family history, there is no Pca screening system as such in the UK. I tend to think we should have one but there are arguments against.

(Just to add Alun - don't blame yourself for this. How were you to know? Concentrate on moving forward from this point)

Edited by member 05 Jul 2019 at 21:54  | Reason: Not specified

User
Posted 06 Jul 2019 at 00:11
Thank you Pete. All the very best for your and your brothers treatment. I will try and move forwards, rather than looking backwards to support my Father. At least I know about PSA and family risk now, to get myself checked out
User
Posted 06 Jul 2019 at 06:30
Very sorry to hear of your dads cancer. I’m currently looking into articles on Chemo given early with hormone injections. The idea is that it makes the hormone therapy last longer before the cancer gets the better of it. I’ll look again for the last article I read. It clearly stated that whilst Chemo is shown to batter cancer cells and give them a massive shock , there is no hard evidence yet that it actually extends overall life. For example for some men it works great ( or was it just the HT ? ). And for others they have it and their psa just keeps rising anyway. In some cases it can cause other life threatening conditions. But I’m certainly not the most well-read on this forum. I may have to make this decision soon too. Good luck
User
Posted 06 Jul 2019 at 08:57

Sorry to hear of your dad’s diagnosis Alun. The Stampede trial showed a survival advantage with early docetaxel chemotherapy for metastatic prostate cancer.

The thinking is that those survival benefits would also extend to locally advanced prostate cancer patients. It appears that benefits are better in high risk, high grade patients.

If your dad can tolerate the upfront chemotherapy that would be the right thing to do.

https://prostatecanceruk.org/about-us/projects-and-policies/access-to-drugs/earlier-docetaxel

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6300376/pdf/ott-11-9061.pdf

Best wishes,

 

Ido4

User
Posted 06 Jul 2019 at 09:07
Thanks Chris. I do believe that the STAMPEDE trial showed conclusively that chemo (for 6 sessions) alongside HT can improve life expectancy by around 2 years. A very good www. On this is Stampedetrial.org

Of course it is an individual's decision as to whether to have chemo (weighing up likely benefits over likely side effects) and the Oncologist will also help determine whether someone is 'medically fit/eligible' for Chemo

This will be a big decision for my Father, as he is generally fit, but is also concerned about the thought of having Chemo

All the best to you and your treatment decisions

Having my own PSA test next week, as I now know I am also high risk due to my Fathers diagnosis

User
Posted 06 Jul 2019 at 10:15

hi alun

all the very best. see my profile.

how old are you may I ask ? any siblings ?

you asked about .  wisdom.

firstly it will be very raw and possibly the worst period over the next few weeks.  it will actually improve.  emotionally whole family impact is underestimated.  NHS individuals may seem cold and detached..  everyone has a variety of experiences.

so.  advice  .  if you haven't already.  great resource on this site.

https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit

also local support group.  possibly Basingstoke  near you ??

 Can be worth a contact.

Age is irrelevant 're. your dad. Its  his overall fitness. health  and attitude. reaction to this news .

The key is to keep questioning,  building knowledge and weighing up  QofL .   Chris posts are well worth reading and many others.    If you and dad already have a loving and open relationship you are already shifting any outcomes in your favour. 

At the moment this is just 1 point on your dad's 'timeline ' ..  he might have had pca for 15+yrs.    The term 'aggressive ' is relative.

Hope this helps.

all the very best 

Gordon 

Edited by member 06 Jul 2019 at 10:29  | Reason: Not specified

User
Posted 06 Jul 2019 at 12:29
Thank you Gordon,

I am 48, and have a twin brother.. Booked in my 1st ever PSA test for next week, and informed my twin too

Only silver lining is that my fathers Advanced pca not yet found in bones or organs. However, mets have been found in lymph nodes in Pelvis. Not sure which is better/worse

All the best

Alun

User
Posted 06 Jul 2019 at 20:22
Alun

I was diagnosed last August and am still on HT, had 6 chemo sessions between October and January then 20 RT sessions in March and April.

The chemo pretty well knackered me for 4 months, steroids made me pile on a couple of stone and in week 2 after the chemo I was generally in bed feeling weak and awful.

I couldn't have done a 7th session. QOL was none existent.

RT in comparison was a breeze.

So 6 months after completing chemo I'm feeling pretty good, walking a few miles a day and enjoying a few holidays.

Others will tell you chemo is a piece of cake, we're all different.

Hope this helps.

John

User
Posted 06 Jul 2019 at 23:15

hi alun.

pure coincidence I posted on 'kevink'   the other week and noticed he is  a twin.

research. .. 

https://www.icr.ac.uk/

both myself and brother registered few years ago.

https://www.icr.ac.uk › ukgpcs

UK Genetic Prostate Cancer Study - The Institute of Cancer Research 

obviously not specific to twins and see criteria .  ie diagnosed family members.

Although they asked for as much family tree and other causes of death in near family.

I've not had any DNA analysis performed.

 

Regards Gordon 

 

 

 

 

 

 

Edited by member 06 Jul 2019 at 23:36  | Reason: Not specified

User
Posted 07 Jul 2019 at 18:54

Hey,

 

My dad has advanced metastic prostate cancer Gleason score 7 with bone mets(in spine, clavicle, ribs) . 

Hes currently on round 4 of chemo and apart from tiredness, around day 2-5 post chemo he is sailing through it . No sickness, no hair lose. He is putting on weight around 9kgs in 3 months , and apart for the fact he ll need a new kilt for my wedding in September this hasn’t been a problem. 

 

This is only his experience but like yourself we thought the worse and imagined it being a horrible time. But apart from tiredness and grumpyness(we blame the hormone treatment) it’s been actually okay! 

Keep us updated on how he gets on. 

 

A

 

 

User
Posted 07 Jul 2019 at 20:16

Hi Alun

I was diagnosed August 2018 mets to lymph node, rib and jaw. PSA 5806. Straight on to HT (Degarelix and now Prostap). Early Chemo October through to January. Was worried about side effects but was lucky. Worst thing was finger and toe nails deteriorated (Peripheral Neuropathy), they’re slowly improving now. Some hair thinning otherwise ok. Still tired mainly from HT. Generally not a terrible experience for me. Lucky I guess.

PSA in March after chemo was 6.6 (rose to 63 in May) I was guided by my Oncologist’s advice and don’t regret it. Chemo will trash your white blood cells and during days 7-10 after chemo need to be very careful not to pick up any infection. The Chemo nurses are also great and will ensure the experience goes ok. 

Good luck       David

 

 

User
Posted 08 Jul 2019 at 08:08
My father in law refused any treatment that would affect his sex life but did go through with the chemo, aged 79. Apart from his hair falling out, he found the biggest problem was that his wife wouldn't let him go to the pub in days 5-7 ... otherwise he breezed through it with no ill effects. What we didn't know until 3 or 4 years later was that the chemo can cause heart damage. He survived 4 years post diagnosis.

However, the estimates for your dad seem a little on the low side. We have men that are still here 10, 15 years or more after similar diagnosis.

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

User
Posted 16 Jul 2019 at 22:23

Hi Alun

just to let you know that my hubby was diagnosed more than eight years ago, Gleason 10 and mets in many bones and Lymph nodes. He’s still with us (though things are difficult now). We were told around two years as a prognosis but what a load of rubbish that was. John had chemo last year and was fine really, just one episode of flu that led to him being hospitalised. John was 61 when diagnosed and swore he’d make 70, and he has.

good luck for your dad,

love Devonmaid xxx

User
Posted 12 Sep 2019 at 18:25

Hi

My Husband was diagnosed in 2015 with Advanced Prostate Cancer with mets in his lymph nodes and aorta. It is not curable. His Psa was 2315. His Gleason was 8. He had more or less immediate hormone treatment with decapeptyl and was due 6 rounds of Chemo.  He was 71 at the time.  He was scanned and it had not spread to his bones.  He was not given any time scale for survival as I suspect they thought that although they would try treatment it would be a long shot.

He responded generally well to the treatment and his psa gradually reduced after 18 months to 1.  I won't say it was a walk in the park but we focused on getting him well. For him the combination of Chemo and hormone treatment worked.  Luckily there have been many clinical trials which have produced many new treatments and combinations of treatments.  

There are side effects but they are different for everyone and my Husband is here 4 years later.

It is important to try to stay positive and take one step at a time.  It is very upsetting being diagnosed with cancer.  It is always in your mind.  It changes over time as you focus on getting them well. 

In his case he had no symptoms at all.  I do believe there should be some sort of screening as they have for Breast and bowel cancer. 

If I can be of any more help please just ask.

Kind Regards

 

Carol

 

 

 

User
Posted 07 Jan 2020 at 06:46
We have members here that have done 10 years + more with bone mets. RT would have been pointless with so many mets.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 05 Jul 2019 at 21:50

I'm not really qualified to give advice Alun but you do raise an interesting point about screening. As I understand it, the PSA test has limitations in diagnosis - it is far more valuable post treatment to measure success or otherwise. In my case I asked for a PSA test because my father died of Pca at 57 and my older brother was diagnosed back in late 2012. My PSA was raised (just over 7) and even then the advice was there may be nothing wrong (I had no symptoms whatsoever but I did have the family history) and it might be BHP (a benign enlargement of the prostate). To be fair to the NHS they did leap into action with biopsies and scans almost immediately which lead to a diagnosis of Pca.

I think I'm right in thinking that unless there are symptoms or family history, there is no Pca screening system as such in the UK. I tend to think we should have one but there are arguments against.

(Just to add Alun - don't blame yourself for this. How were you to know? Concentrate on moving forward from this point)

Edited by member 05 Jul 2019 at 21:54  | Reason: Not specified

User
Posted 06 Jul 2019 at 00:11
Thank you Pete. All the very best for your and your brothers treatment. I will try and move forwards, rather than looking backwards to support my Father. At least I know about PSA and family risk now, to get myself checked out
User
Posted 06 Jul 2019 at 06:30
Very sorry to hear of your dads cancer. I’m currently looking into articles on Chemo given early with hormone injections. The idea is that it makes the hormone therapy last longer before the cancer gets the better of it. I’ll look again for the last article I read. It clearly stated that whilst Chemo is shown to batter cancer cells and give them a massive shock , there is no hard evidence yet that it actually extends overall life. For example for some men it works great ( or was it just the HT ? ). And for others they have it and their psa just keeps rising anyway. In some cases it can cause other life threatening conditions. But I’m certainly not the most well-read on this forum. I may have to make this decision soon too. Good luck
User
Posted 06 Jul 2019 at 08:57

Sorry to hear of your dad’s diagnosis Alun. The Stampede trial showed a survival advantage with early docetaxel chemotherapy for metastatic prostate cancer.

The thinking is that those survival benefits would also extend to locally advanced prostate cancer patients. It appears that benefits are better in high risk, high grade patients.

If your dad can tolerate the upfront chemotherapy that would be the right thing to do.

https://prostatecanceruk.org/about-us/projects-and-policies/access-to-drugs/earlier-docetaxel

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6300376/pdf/ott-11-9061.pdf

Best wishes,

 

Ido4

User
Posted 06 Jul 2019 at 09:07
Thanks Chris. I do believe that the STAMPEDE trial showed conclusively that chemo (for 6 sessions) alongside HT can improve life expectancy by around 2 years. A very good www. On this is Stampedetrial.org

Of course it is an individual's decision as to whether to have chemo (weighing up likely benefits over likely side effects) and the Oncologist will also help determine whether someone is 'medically fit/eligible' for Chemo

This will be a big decision for my Father, as he is generally fit, but is also concerned about the thought of having Chemo

All the best to you and your treatment decisions

Having my own PSA test next week, as I now know I am also high risk due to my Fathers diagnosis

User
Posted 06 Jul 2019 at 09:13
Thanks Ido4

Your understanding is exactly the same as mine - on the back of the conclusive STAMPEDE trial results

Seeing the Oncologist with my dad in 2 weeks time, whom I'm sure will recommend upfront chemo (as dad diagnosed with high grade high risk Advanced PC, and is otherwise 'fit'). He has PC in lymph nodes in pelvis but not yet PC in organs or Bone mets

My father is scared of chemo, so we are interested to know more about people's experiences of likely side effects. My understanding is that you can always start chemo, but if it becomes too intolerable then you could always ask to stop before further sessions

All the best to you

User
Posted 06 Jul 2019 at 09:55

Hi Alun,

There are many on this forum who have been through chemotherapy and I’m sure they will respond with their experiences and tips on how best to cope with it.

There will be fewer who have had it upfront.

Everyone is different so your Dad’s experience should he go with it will be unique to him in many respects. I understand the dose can be reduced a little or number of infusions changed (up or down) depending on the individual. There is at least one member here who has had a lot of docetaxel infusions.

One member did a video blog of his treatment. I will try and find the link for you.

 

 

Ido4

User
Posted 06 Jul 2019 at 10:15

hi alun

all the very best. see my profile.

how old are you may I ask ? any siblings ?

you asked about .  wisdom.

firstly it will be very raw and possibly the worst period over the next few weeks.  it will actually improve.  emotionally whole family impact is underestimated.  NHS individuals may seem cold and detached..  everyone has a variety of experiences.

so.  advice  .  if you haven't already.  great resource on this site.

https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit

also local support group.  possibly Basingstoke  near you ??

 Can be worth a contact.

Age is irrelevant 're. your dad. Its  his overall fitness. health  and attitude. reaction to this news .

The key is to keep questioning,  building knowledge and weighing up  QofL .   Chris posts are well worth reading and many others.    If you and dad already have a loving and open relationship you are already shifting any outcomes in your favour. 

At the moment this is just 1 point on your dad's 'timeline ' ..  he might have had pca for 15+yrs.    The term 'aggressive ' is relative.

Hope this helps.

all the very best 

Gordon 

Edited by member 06 Jul 2019 at 10:29  | Reason: Not specified

User
Posted 06 Jul 2019 at 12:29
Thank you Gordon,

I am 48, and have a twin brother.. Booked in my 1st ever PSA test for next week, and informed my twin too

Only silver lining is that my fathers Advanced pca not yet found in bones or organs. However, mets have been found in lymph nodes in Pelvis. Not sure which is better/worse

All the best

Alun

User
Posted 06 Jul 2019 at 20:22
Alun

I was diagnosed last August and am still on HT, had 6 chemo sessions between October and January then 20 RT sessions in March and April.

The chemo pretty well knackered me for 4 months, steroids made me pile on a couple of stone and in week 2 after the chemo I was generally in bed feeling weak and awful.

I couldn't have done a 7th session. QOL was none existent.

RT in comparison was a breeze.

So 6 months after completing chemo I'm feeling pretty good, walking a few miles a day and enjoying a few holidays.

Others will tell you chemo is a piece of cake, we're all different.

Hope this helps.

John

User
Posted 06 Jul 2019 at 23:15

hi alun.

pure coincidence I posted on 'kevink'   the other week and noticed he is  a twin.

research. .. 

https://www.icr.ac.uk/

both myself and brother registered few years ago.

https://www.icr.ac.uk › ukgpcs

UK Genetic Prostate Cancer Study - The Institute of Cancer Research 

obviously not specific to twins and see criteria .  ie diagnosed family members.

Although they asked for as much family tree and other causes of death in near family.

I've not had any DNA analysis performed.

 

Regards Gordon 

 

 

 

 

 

 

Edited by member 06 Jul 2019 at 23:36  | Reason: Not specified

User
Posted 07 Jul 2019 at 18:54

Hey,

 

My dad has advanced metastic prostate cancer Gleason score 7 with bone mets(in spine, clavicle, ribs) . 

Hes currently on round 4 of chemo and apart from tiredness, around day 2-5 post chemo he is sailing through it . No sickness, no hair lose. He is putting on weight around 9kgs in 3 months , and apart for the fact he ll need a new kilt for my wedding in September this hasn’t been a problem. 

 

This is only his experience but like yourself we thought the worse and imagined it being a horrible time. But apart from tiredness and grumpyness(we blame the hormone treatment) it’s been actually okay! 

Keep us updated on how he gets on. 

 

A

 

 

User
Posted 07 Jul 2019 at 19:58

Thank you A!  

This is encouraging to know.  I keep explaining to my Father (who is scared even of the word, chemo) that all mens experiences will be different with chemo, and also the conclusive findings from STAMPEDE that speak of the benefits of upfront chemo

Very pleased to hear your Father is tolerating it well

Alun

User
Posted 07 Jul 2019 at 20:16

Hi Alun

I was diagnosed August 2018 mets to lymph node, rib and jaw. PSA 5806. Straight on to HT (Degarelix and now Prostap). Early Chemo October through to January. Was worried about side effects but was lucky. Worst thing was finger and toe nails deteriorated (Peripheral Neuropathy), they’re slowly improving now. Some hair thinning otherwise ok. Still tired mainly from HT. Generally not a terrible experience for me. Lucky I guess.

PSA in March after chemo was 6.6 (rose to 63 in May) I was guided by my Oncologist’s advice and don’t regret it. Chemo will trash your white blood cells and during days 7-10 after chemo need to be very careful not to pick up any infection. The Chemo nurses are also great and will ensure the experience goes ok. 

Good luck       David

 

 

User
Posted 08 Jul 2019 at 08:08
My father in law refused any treatment that would affect his sex life but did go through with the chemo, aged 79. Apart from his hair falling out, he found the biggest problem was that his wife wouldn't let him go to the pub in days 5-7 ... otherwise he breezed through it with no ill effects. What we didn't know until 3 or 4 years later was that the chemo can cause heart damage. He survived 4 years post diagnosis.

However, the estimates for your dad seem a little on the low side. We have men that are still here 10, 15 years or more after similar diagnosis.

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

User
Posted 08 Jul 2019 at 23:14

Thank you David, 

Definitely want my dad to have chemo, and thanks for sharing your experience with it

All the very best to you, and fantastic to hear your PSA going down so radically after treatment

Alun

 

 

User
Posted 08 Jul 2019 at 23:19

Thank you Lyn for sharing your experience.  I too am confident that he can well beat the pessimistic life expectancy initially mentioned by the Urology team.  High Gleason 9 and high PSA 305 and in Pelvic Lymph nodes, but not yet in bones or organs

All the best to the men in your life.  You clearly care about them all, and it means so much to have support

Alun

User
Posted 16 Jul 2019 at 18:21

Hi Alun, If you want to check me out,  my thread is "Diet and Spirituality" where you can see how I (and others) have dealt with what can be a devastating diagnosis. I am not a religious nutter or a time waster - my day job before retirement was lecturing in Philosophy.

Enough about me. Please would you let me know your father's name by private message on PCa UK, and I and my wife will pray for him "at a distance". This can take different forms, but more of that when you get back to me. We have been around some remarkable instances of healing at a distance. Some of them instantaneous...

Thanks for reading this far. We are already with you in the vital caring you are giving to your father...not least by your recent post.

Blessings - Barcud (David and Jill)

User
Posted 16 Jul 2019 at 21:16
A171, no issue with you looking at Barcud's ideas about miracle cures but do not send your details or any private message to this person - I have reported the post to the moderators.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Jul 2019 at 22:23

Hi Alun

just to let you know that my hubby was diagnosed more than eight years ago, Gleason 10 and mets in many bones and Lymph nodes. He’s still with us (though things are difficult now). We were told around two years as a prognosis but what a load of rubbish that was. John had chemo last year and was fine really, just one episode of flu that led to him being hospitalised. John was 61 when diagnosed and swore he’d make 70, and he has.

good luck for your dad,

love Devonmaid xxx

User
Posted 18 Jul 2019 at 16:50

Hi Alun,

I was diagnosed in Aug 2016 with advanced PCa and a PSA of 529 at the age of 75.  I had damage to the lymph nodes which has led to Lymphoedema.  I had early chemo which was not too bad- the worst part was constipation at the start!  You do need to check your temperature several times a day to guard against sepsis.  I felt weak but managed short level walks on most days.  Since the chemo, I have carried on cycling and sailing and have just done an 800-mile charity bike ride.  I would certainly recommend early chemo.  I am also on Arm K of the Stampede trial (taking Metformin twice a day).

I wish your Dad all the best,

Gromit.

User
Posted 28 Jul 2019 at 15:30

Hi all, I am 76 and was diagnosed with Advanced Prostate Cancer in August 2018. I thought I would share my experiences over the last year to help (maybe) others in coming to terms with this unwelcome event in our lives.

My details are: DRE, Biopsy, CT & Bone Scans and various blood tests, PSA 564.4, Gleason 5+4 in 10/11 cores and bone mets (skull to pelvis). My general health was good being active, non-smoker for life, not obese, without heart, asthma or diabetic issues, not on any drugs; do like a drink though !!. Following a meeting with various professionals and weighing up the  Stampede research, I decided to go ahead with chemotherapy.

I was started on Hormone treatment (Bicalutamide) followed quickly by Zoladex injections, with the first of 6 chemotherapy (Docetaxel) sessions started on 3rd October. I kept a fairly detailed log of my progress which it has to be said is pretty boring and really minor. Was I lucky or what ??!!

The hormone treatment gave me hot flushes, slightly enlarged breasts and thinning hair. I must point out at this time I had decided that if I was going to have hair loss issues then I would control them, so I had a number 2 crew cut, so the thinning hair never seemed so bad but I never lost it all. To this day it is growing strongly although I have decided to keep it short; one thing "IT'S GROWING BACK CURLY"

One thing that I didn't mention earlier was that I had had a reflux problem some years back and this erupted again but was kept under control with Lansoprazole and I'm now coming back off this.

Over the period of the treatment the night time pees has come down from 4 to 0/1 and diarrhoea and sickness have never been more than an irritation, apart from my first session on returning home, I suffered some pretty severe diarrhoea and sickness and over the following few days was "loose" but it didn't last and didn't happen again. Only on one day over the whole treatment period did I feel so tired that I went to sleep on my return. I have slept well eaten everything as normal although it is fair to say that during the treatment the taste buds were shot to bits; OK now.

Over the treatment period the fitness and stamina dropped off dramatically, but they are virtually back to where they were pre C. Finger and toe nails didn't actually come off but they were bit sensitive and looked pretty horrible. I also had puffy legs and sensitive ankles but no real pain, just minor discomfort; this is still present as are the aches in the lower back, shoulders, arms and hands which had dropped off during the treatment.

 So during the treatment period the side effects really didn't amount to much and didn't seriously affect my life which brings us to the first proper review with blood tests and CT & Bone scans in February 2019. Well this was a real eureka moment the PSA was down to 1 and everything else looked hunky dory and I felt pretty good.

At the next review (blood test only) 27th June the results were not so good the PSA had gone back up to 18 and there was minor movement on the bone results but everything else was OK. Well I have to say this was real bummer after the previous review, but the consultant didn't seem too perturbed and put me on an additional hormone tablet (Bicalutamide again) to assess progress later - next review 15th August - fingers crossed.

Sorry for this rather long item, but it tells my story and it might help or comfort others. One piece of advice I was given early in this process "record the interviews" because believe me you will not remember everything you are hearing. All through this experience the NHS has performed impeccably which is more than can be said for the parking arrangements which turned out to be more stressful than the treatment.

Clive

User
Posted 31 Jul 2019 at 20:25
Just diagnosed aged 83. My psa was 134. I had MRI and bone scan which sowed local spread to seminal vesicles but none to bone or organs. I have only been offered Zoladex injections as I also have ulcerative colitis. My second injection is tomorrow.

My wife had docetaxol for breast cancer some years ago. She has been well ever since.

User
Posted 12 Sep 2019 at 18:25

Hi

My Husband was diagnosed in 2015 with Advanced Prostate Cancer with mets in his lymph nodes and aorta. It is not curable. His Psa was 2315. His Gleason was 8. He had more or less immediate hormone treatment with decapeptyl and was due 6 rounds of Chemo.  He was 71 at the time.  He was scanned and it had not spread to his bones.  He was not given any time scale for survival as I suspect they thought that although they would try treatment it would be a long shot.

He responded generally well to the treatment and his psa gradually reduced after 18 months to 1.  I won't say it was a walk in the park but we focused on getting him well. For him the combination of Chemo and hormone treatment worked.  Luckily there have been many clinical trials which have produced many new treatments and combinations of treatments.  

There are side effects but they are different for everyone and my Husband is here 4 years later.

It is important to try to stay positive and take one step at a time.  It is very upsetting being diagnosed with cancer.  It is always in your mind.  It changes over time as you focus on getting them well. 

In his case he had no symptoms at all.  I do believe there should be some sort of screening as they have for Breast and bowel cancer. 

If I can be of any more help please just ask.

Kind Regards

 

Carol

 

 

 

User
Posted 17 Oct 2019 at 15:18

Well hello again. Sorry for the long delay since my last contribution, but as you will see I've had a lot on my plate.

The August meeting with the consultant showed yet more deterioration in the PSA up to 54. I was still feeling very good in myself with no particular bad side effects. The consultant offered a new treatment plan to move us forward as clearly Zoladex on it's own was losing the battle. I was put back on to Bicalutamide for a month until agreement was sought and approved for me to go onto Zytiga (Aberiterone) and Prednisolone. A further meeting was set up for 8th October which was preceded by CT and Bone scans and Blood tests; I was started on the new programme immediately. Depressingly the Blood tests again showed an increase in the PSA to 64.

Today I saw the specialist oncology nurse and together with another Blood test an initial assessment was made to determine the continuing course of action. Whilst it was accepted there was not enough time to properly evaluate the progress there had been a reduction in the PSA to 45.

The recent scans revealed no particular movement since February apart from the bone scan with two small deteriorations, one in the right shoulder and a new incident by the right eye. Again it has to be said that the new treatment has only just started so progress might be slow and any short term results misleading.

Currently  my general health continues to be good with no really bad side effects apart from the hot flushes which do seem to have been worse recently. 

Since January 2019 when my chemo finished my wife and I were determined, my fitness permitting, to carry out the plans we had considered before this event took over our world. We tow a caravan and have done so for 30 years and we did not want to see this stop. We live in Horsham West Sussex and had holidays in Sidmouth Devon, North Yorkshire and we have just come back from a 4 week holiday meeting friends in Holland. On none of these trips did I feel under strain from the aPC / treatment. You cannot imagine the tremendous confidence it gives one when you are able to do something like this. One interesting point at the August meeting with the consultant was when we said we had planned a 4 week caravan holiday in Holland, he was positively enthusiastic; my and I both thought he would be against it. Also during this period I have been able to continue my hobby, fishing, and whilst currently booking holidays is difficult because of the bi-weekly supervision regime, I have stolen a weeks fishing away. 

Whilst luck has a huge part to play in how we cope, just keep doing what you enjoy for as long as you can.

Clive

 

User
Posted 14 Dec 2019 at 17:48

HI,

Am currently on my 5th round of chemo. out of 6 planned sessions and side effects not too bad.I am about your dads age (see my bio on here) If he is otherwise in reasonable health he should considerThey give you various meds. to help cope with the treatment (anti nausea sickness tablets etc ) .As others have said with the prospect of another couple of years of good health proved by the Stampede trials its a bit of a no brainer.If he has a terrible reaction to the chemo. they can reduce the dose or take him off it altogether.

Best wishes to you both.

Norm

User
Posted 06 Jan 2020 at 23:56

Hi all, an update on my father...

The good news is that he tolerated his 6 rounds of chemo very well, with little to no side effects.  His PSA also responded well, down from 200-300 pre chemo, to now 0.4 after chemo

He responded so well to chemo that he was offered radiotherapy, but here's the bad news...

...On the CT scans post chemo (to determine where radiotherapy would be targeted to) they found >5 but <10 'tiny' 'scattered' mets in the bone, all around the pubic bone, pelvis, base of spine, and was then told his radotherapy is cancelled as it would more harm than good and wouldn't change his outcome.  Was told they are likely not new mets, but were previous micro-mets now show up/illuminated post chemo

So now he will remain on Prostap, until it stops working, and then look to Abi or Enza as next treatment option

Dad really scared that bone mets definitely equal short life expectancy, and now planning for the end.  Really upsetting

Thanks for sharing any thoughts.  Is there hope if you have bone mets?  He is 77, advanced mHSPC, Gleason 9, otherwise fit, with no current pain

Edited by member 06 Jan 2020 at 23:57  | Reason: Not specified

User
Posted 07 Jan 2020 at 06:46
We have members here that have done 10 years + more with bone mets. RT would have been pointless with so many mets.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Jan 2020 at 06:53
Thank you. Disappointed that RT not an option now, but I do understand all it would be doing is giving toxicity with no benefits, in my fathers case

Would be really interested in hearing from such members who have bone mets for a long time, and what their journey has been so far

Much appreciated

 
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