I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Scared, worried, need help! - Advanced prostate cancer,Prostate cancer treatment,Chemotherapy

Email this conversation Print this conversation
User
Posted 16 Oct 2014 at 13:20

Hi all,

My Dad has been diagnosed 2 months ago, after many years of being concerned about his symptoms and his gen family history (His Dad died from adv stage prostate cancer aged 75, 2 of his Dad's brothers had it, and now he has!). His GP dismissed these symptoms so many times, and waved-away his concerns, attributing his symptoms to various problems from Diabetes to Prostatis (gland enlargement) and others...!

Not once did he explore his symptoms thoroughlly enough and order a simple PSA test. His last PSA was in 2011 and was considered a normal range 7 or so. Since last year he has displayed the common symptoms of Prostate cancer, fatigue, pain, back ache, urninary assoc problems, erecytile dysfunction etc etc.

In April of this year he battled on, but collapsed while on a family outing. He then was taken to an A&E ward where lots of tests were run, heart, ECG and bloods were taken. The blood results were sent to his GP but strangely they could find nothing wrong. Even a chest X-ray was taken. I presume they suspected a pulmonary/heart/lung problem due to his collapsing.

The results were not further investigated by his GP and we have since seen this letter, and it shows several abnormalities within the blood ranges, white cell count high, calcium levels abnormal (consistent we later discovered with Hypercalcemia - bone metases), all very typical of cancer.

Due to his pain and subsequent discomfort, he became withdrawn. As a family we insisted he see another GP. One time it became too much and he saw 2 diff doctors within 2 weeks apart that examined him (DRE) and declared all was 'normal'! Finally a PSA test was given. The reading, marked "non-urgent" at his Surgery a few days later was 170+.

After private consultations and lots of tests in September from MRI's to bones scans to the full works, they have determined he has Metastatic Prostate cancer which has spread outside of the prostate gland to the seminal vesicles, various lymph nodes (primarily in the pelvic region), his skeletal system, extensively his hips and pelvis and CT scans with tracer show activity in regions: ribs, femur & skull.

We are all very scared and worried and he is going through a terrible time obv. He's seen his dad die in a painful way 20 years ago!

He is now on degaralix - hormone treatment, which has initially brought down his PSA from 220 to 7! The Professor and team who he is under at the Royal Marsden know their stuff and they have also recommended early chemo therapy to start in conjunction with the continuing hormone prog.

There are so many questions I would like to ask, like how does chemo work for you - his prognosis on chemo? Why are they not targeting boney metases (with new techniques like Radium 223, Biphosphantes etc). Why can't they surgically remove/freeze/radiate affected lymph nodes and or orginal primary tumor site??

I would just like to speak to people who are going through the same with a loved one and share experiences, as i feel so helpless! Can you help? I'm a 40 year old son of a Father who I love to bits, I would do anything to see him well again, and I know it's incurable but I hope we can give him hope and as long as we can, with comfort, to live as long as possible. I know i too am at risk, as is my brother and indeed sister. god bless to you all.

John

 

 

 

 

 

User
Posted 17 Oct 2014 at 08:54

Hi John,

My heart also goes out to you. Some recent research, also discussed on a few other threads suggest starting chemo with HT asap with an advanced diagnosis extends life expectancy. Like you, I asked about Radium 223 and other treatments for my partner but was told some are not possible if, for instance there is spread to soft tissue. It is good to ask though and explore every option. If these are not possible, you need a clear explanation why ?

Like you. we had a ghastly experience throughout diagnosis which sadly extended to a lot of treatment, but at least I can share things here with benefit of hindsight. Do find a medical team you feel are really on the ball and willing to explore every available option also, are there any clinical trials your Dad may be eligible for. Monitoring is often better on a trial and you have nothing to lose. The specialist nurses on this site are great for support if you need to talk and I have found Macmillan are also brilliant. Remember to look after yourself and that you are not alone. Keep us posted,

Very best wishes, Fiona.

User
Posted 30 Oct 2014 at 14:08
John

sounds like your Dad is responding very well to the HT which is good news, having chemo at this stage is also the route that I would prefer Oncologists used with such advanced cancer. Chemo is tough so being physically strong to start with really does help.

You have asked a question that I raised , why is surgery not offered to remove the sourse of the cancer? It is quite a complex thing to answer but I will try and give it a shot for you and I am sure some of the much more experienced members will add on. Once the cancer has spread outside of the prostate it has already started to mutate. The cancer itself is like a shift changer, it can actually create it's own food source it can also create its own personal vascular system and use this to transport itself. So removing the primary source would not necessarily help and the surgery can also cause all sorts of other problems ike incontinence. There is a line of thinking that suggests adjuvant RT to the prostate may be beneficial and this is something that is being trialled for some patients as an arm of the massive stampede trial.

Hitting the cancer hard and fast seems to be a good way forward, however these treatments are all very debilitating so using too much in one go would almost certainly be counter productive. There is also a need to retain some treatment options for later on bearing in mind that men with advanced metastatic disease will become castrate resistant at some point i.e using HT to deprive the cancer of its primary food source (testosterone) will cease to work when it mutates and starts to generate its own food source.

I think your Oncology team will do their very best to ensure that your Dad is getting the right balance of treatments.

Docetaxel chemo is pretty heavy hitting and given alongside HT will be quite a lot for your Dad to take on, a lot of Men do not complete the full 10 cycles indeed some oncologists think that after 7 or 8 here is not much more to be gained and prefer to keep this as another option to repeat later in the course of treatment.

One thing I would ask about is having a biphosphonate added such as Zometa, it helps to strengthen the bones and is sometimes beneficial in relieving pain from Mets. It is usually given as a transfusion which is adminstered at the same time as chemo.

Finally as your Dad already has extensive bone progression make yourslef familiar with all the symptoms and signs of Spinal Cord compression, a leaflet for this is uaully given to patients with advanced PCa so if you do not have one ask for this at your Dad's next appointment.

I really hope that you are able to keep your Dad with you for as long as you can, there are a number of people out there who defy this horrid disease even when it has advanced significantly.

Very best wishes

xx

Mo

User
Posted 30 Oct 2014 at 17:51

Mo is spot on. The short answer is that it would leave your dad with a whole load of side effects and a need to recover from major surgery when he is already weakened, without any real benefit.

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

User
Posted 16 Oct 2014 at 21:02

, Hi Jon,

Firstly welcome to this site, you will meet many people here who will be able to give help advice and just be there to listen. My heart goes out to you your Dad and the rest of your family.

Sadly your story of miss diagnosis is not uncommon, ours is similar in that Trevor was going to our GP and seeing several different DRs for over 18mths  with back pain lethargy rib pain in fact all of the symptoms that your Dad has had. He was eventually diagnosed 18mths ago with a psa of 13000. We also are not in the cure camp with a similar spread to your Dad. We have also recently found out that 2 of his half brothers have died of pca.

If you want to read any individuals bio then just click on there name or Avatar. The toolkit is very helpful it explains about Diagnosis, treatments , different drugs there is loads of useful information in there. You can download it or ring the PCUK helpline and they will post it to you.

I hope many people will come along and explain about different treatments etc for you. There are quite a few of us on here in the Mets club .

The prognosis for your Dad isn't good but I am sure that you realise that and there are so many new treatments being developed all the time. Have hope there are many men on here who have lived for years after being diagnosed.  There are even a few miracle stories on here.

If it helps you then keep posting, let us know how you and your Dad are doing.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 17 Oct 2014 at 07:24
Jon

so sad to read the story of your dad's battles. I hope you can find valuable help here.

My Husband died of advance and very aggressive metastatic Pca earlier this year he was Gleason 10 wth a PSA of 545 at diagnosis . In hindsight I think he should have had chemo immediately, he was hormone resistant from the start so I would push for that if you can

xxx

User
Posted 17 Oct 2014 at 10:38

Sorry to read about your Father John.

Are you and your brothers having regular PSA or DRE tests yet?

Dave

User
Posted 29 Oct 2014 at 10:34

Hi Johnny R,

I have recently been diagnosed with PCa and awaiting final scan results.Presumably various treatments will 

be offered by the local NHS team.As I have private health cover perhaps you could tell me how to make best use of this ?

I hope you are making some progress with your father John.

 

Nigel S

 

User
Posted 29 Oct 2014 at 14:45

Hi all,

 

A big thanks to you all for showing support and taking time to feedback. It's so reassuring that other people out there know what's going on! It seems you have all had very similiar experiences as our family have had on the NHS! It really is a disgrace in this day and age....

Anyway on a more positive light my Dad is now under a caring top team under a Prof Eeles at the Royal Marsden Hosp after we looked for a second opinion (not on diagnosis but treatments offered). He is on hormone treatment, and as prev stated this worked well bringing his PSA down from 280 to 1.3! He has now started chemo (docetaxel) and is suffering harsh side effects, as warned by his team. But we are willing to take these to take the fight to the disease. He is very strong but the chemical drugs are very potent. Our theory is, if it's going to kill the cancer now, and used in conjunction with the hormone (slowing and regressing the disease) it should, logically give him a better outlook in the longer term. In fact medical advise now, esp from the top of the senior medic staff (those at the top of their game) is: the use of multi-treatments side-by-side, a 'hit it hard' and fast, as soon as, no more wait & see care theory, gives better opp for positive results- which makes sense to us all. We will continue to look at new advancements in these areas and with gods help, his wil,l and sheer bodily strength and support - he will live out many more happy years.

One thing that puzzles me though is why they don't operate and surgically remove any affected lymph nodes and the actual prostate itself after the two treatments have shrunk the tumours? Would this not 'better' his outcome - remove the primary source of the cancer??

My personal hope is to now look for trials I can join to help the cause, catching it early and recognising any gene-interaction within the family links, i think BRAC1-2 genes and indeed others. I also have been PSA checked, against the advice of my local GP who say's I'm too young, but in the end agreed to go-ahead to glean a base-reading given my 'family history'. My PSA was 0.5, and reasoned as low-risk. I'll keep this record in mind and any raise i'll get further investigations, like DRE and or scans. I know now to take my health into my own hands and get a PSA test every year, a full blood test and an MRI every 2-3 years (privately). That's the plan.

Thanks so much for your continued support on here and sorry for the delayed reply, my Dad has been receiving his first chemo this week and wanted to be with him - holding his hand and trying to be positive. What struck me in the Chelsea wing of the RM Hosp, was all these ill people from a range of ages, with a smile on their faces. I don't know their individ circs or cases, but never the less, in my eyes they are all hero's and their families living angels!! The footballers and other idols that young people worship and we hear about on the news/media don't even come close. Please keep in touch, you all brought a smile to my face :) LOVE LIFE, LIVE LIFE!

 

 

User
Posted 29 Oct 2014 at 15:08

Hi Nigel,

Good that you have found us but suggest you start your own thread (conversation in this forum speak), so members may get a better idea of your situation and offer helpful comments. Most of us ascertain details of our diagnosis - PSA on diagnosis, Gleason score, staging and results of scans etc., as these become available and enter them under our profile. It can help if you research PCa and a good place to start is the 'Toolkit' on the main part of this Charity's web site. It is helpful to learn about various treatments and side effects as quite often it is left to the patient to decide which of several types of treatments he wishes to have.

Barry
User
Posted 29 Oct 2014 at 20:37

Johnnyr

Glad to hear your dad's treatment is underway.

Also very good to hear you are being proactive about your own health

As far as the GP's go who missed earlier dx.....well I am lost for words

Bri

User
Posted 29 Oct 2014 at 21:10

Hi Johnnyr ,

I know you feel like it's the end of the world. Most people on this site have been there, but there is still hope and a good quality of life after being diagnosed. I felt like you do 9 years ago when I was diagnosed, but look at my profile to see the various treatments I have had so to slow this down. Chemo is a bummer but hey ho it's worth it in the end.

Keep positive and continue to give your dad support.

Trevor

User
Posted 30 Oct 2014 at 10:12

Hi Barry,

Thanks for your guidance,I feel such an amateur at this game.

However I have at least entered my PSA and Gleason score and will add to this in due course.

I'm so impressed with Johnnyr,and his extraordinary battle on behalf of his Dad,John.

What a remarkable man he is...

 

Best Wishes

Nigel

User
Posted 06 Nov 2014 at 19:59

 

"Any ideas what the norm timescale is for hormone resistance to occur?"

 

This often takes years to occur.

Chemo hits cells which are hormone responsive & non-hormone responsive hence the early usage may have good benefits.

"I'm wondering if anyone knows the answers to these questions: sometimes there's more questions than answers.

1. What will the chemo drug Docatexel do to the tumor - it inhibits it's replication process, so it won't grow but then I presume it will recover. What happens (bio-scientifically) after dad finishes his course? "

True the cells can adapt but how quickly varies a lot. Sometimes a second-line chemo is used but quite often HT treatments suffice for some time after chemo.

also

Depends on chemo response. Which might be slow or fast.

"2. If he can't continue the course of chemo can they stop it and re-start at a later date? This hasn't been discussed at consultations! If he does stop earlier will this have a counter-productive outcome eg worsen his outlook?"

Yes , this can happen although second round of same protocol sometimes less effective. Better to change protocol in some cases.

"3. His immune system will also be severely weakened due to the cytotoxic drugs, does his natural immune response (killer T-cells etc) also fight with the Cancer or is not effective at this late stage? "

Unfortunately the bad cells harness immune system cells. But keeping up the immune system helps the body cope better with other problems such as infections.

"4 . Are there any dietary tips to boost his ability to regain strength and carry on the good fight whilst on chemo?? "

Avoid inflammatory foods & eat anti-inflammatory foods. You can research anti-inflammatory foods on the Net.

User
Posted 09 Feb 2015 at 20:43
Hi, sorry you need to be here. I am met but mercifully just prostate and lymphs. I was diagnosed oct 2014 and am at Marsden. I am on zoladex and Biclutamide and have had session 2 of 6 x 3 weekly chemo 6 days ago. At the end of that I will have a month off and then have 6 x 1 weekly big zaps of RT on my prostate. Doc says that should have cancer as small as it will get and then like your dad I will be waiting for ht to stop working. I don't think there is any good answer to when, some it never works for, others get 5 years. At that time ( being positive) they would use 2 nd stage drugs and perhaps re chemo however there is a real belief that there will be something else to help coming on stream by then subject to cost of course. My cons said it would be irresponsible to remove prostate when mets as so many downsides and minimal up if at all.

Someone posted on your thread about nhs v private, private opens up all approved drugs whereas nhs relies on tried and tested and cost benefit/ availability of funds in the cancer drug fund, really hit and miss and appallingly beuracratic with no concern for positive time outcomes.

Similarly, I saw same consultant as you last week re gene test, was told that it will cost me £900 apprx as nhs won't pay as only a 2% chance of finding a benefit , apparently they will pay when it's 10%+ chance.

I am very lucky to date, I am only 49 and run lots, I ran 7 miles tonight in an hour dead and felt fine, I know others are not so lucky.

As for good, both the cons you saw and my other cons both said strong evidence that all men and women should take vitamin D every day, 1000 units, especially in the winter as it boosts immune system, both said all other supplements have no strong supporting evidence, both cons are heavily into research and I trust them. They also agreed that 6 cups of green tea ( decaf if poss), pommegranate juice, tomatoes ( cooked or sauce), walnuts, broccoli/ cabbage/ celery, limited red meat, don't cook in vegetable oil, not too much dairy all showed some evidence of improved health generally and some PC benefits possibly.

The above is only what I have gleaned and now act upon over the last 3 months, I don't see a down side to having more veg, less red meat and fat, my running is only 10% slower to date on it and that is probably cancer/ ht/ chemo.

Hope that helps, message me if you have any specifics if u like, your dad is lucky to have a son like you, you are the hero as your dad like me has no choice but you do, he must be immensely proud and reassured to know you are there for him.

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 24 Feb 2015 at 20:36
Hi John

I can't speak for your dad but personally my wife who is very supportive only wants to look at the up sides. Whilst that is her way of coping and I would not want her to dwell on the worst cases I would also want her to be a bit more average on expectancy.

I had my 3rd round of chemo today and my consultant said when asked that the average time for zoladex to stop working was 18 months, a bit shorter than I previously understood however there are options afterwards. I had absolutely no noticeable side effects last round apart from tiredness when going up stairs/ slopes and hills.

I am still running, did 16 miles last Thursday , slow, hard but totally envigorating.

I wish your dad and you well

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

Show Most Thanked Posts
User
Posted 16 Oct 2014 at 21:02

, Hi Jon,

Firstly welcome to this site, you will meet many people here who will be able to give help advice and just be there to listen. My heart goes out to you your Dad and the rest of your family.

Sadly your story of miss diagnosis is not uncommon, ours is similar in that Trevor was going to our GP and seeing several different DRs for over 18mths  with back pain lethargy rib pain in fact all of the symptoms that your Dad has had. He was eventually diagnosed 18mths ago with a psa of 13000. We also are not in the cure camp with a similar spread to your Dad. We have also recently found out that 2 of his half brothers have died of pca.

If you want to read any individuals bio then just click on there name or Avatar. The toolkit is very helpful it explains about Diagnosis, treatments , different drugs there is loads of useful information in there. You can download it or ring the PCUK helpline and they will post it to you.

I hope many people will come along and explain about different treatments etc for you. There are quite a few of us on here in the Mets club .

The prognosis for your Dad isn't good but I am sure that you realise that and there are so many new treatments being developed all the time. Have hope there are many men on here who have lived for years after being diagnosed.  There are even a few miracle stories on here.

If it helps you then keep posting, let us know how you and your Dad are doing.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 17 Oct 2014 at 07:24
Jon

so sad to read the story of your dad's battles. I hope you can find valuable help here.

My Husband died of advance and very aggressive metastatic Pca earlier this year he was Gleason 10 wth a PSA of 545 at diagnosis . In hindsight I think he should have had chemo immediately, he was hormone resistant from the start so I would push for that if you can

xxx

User
Posted 17 Oct 2014 at 08:54

Hi John,

My heart also goes out to you. Some recent research, also discussed on a few other threads suggest starting chemo with HT asap with an advanced diagnosis extends life expectancy. Like you, I asked about Radium 223 and other treatments for my partner but was told some are not possible if, for instance there is spread to soft tissue. It is good to ask though and explore every option. If these are not possible, you need a clear explanation why ?

Like you. we had a ghastly experience throughout diagnosis which sadly extended to a lot of treatment, but at least I can share things here with benefit of hindsight. Do find a medical team you feel are really on the ball and willing to explore every available option also, are there any clinical trials your Dad may be eligible for. Monitoring is often better on a trial and you have nothing to lose. The specialist nurses on this site are great for support if you need to talk and I have found Macmillan are also brilliant. Remember to look after yourself and that you are not alone. Keep us posted,

Very best wishes, Fiona.

User
Posted 17 Oct 2014 at 10:38

Sorry to read about your Father John.

Are you and your brothers having regular PSA or DRE tests yet?

Dave

User
Posted 29 Oct 2014 at 10:34

Hi Johnny R,

I have recently been diagnosed with PCa and awaiting final scan results.Presumably various treatments will 

be offered by the local NHS team.As I have private health cover perhaps you could tell me how to make best use of this ?

I hope you are making some progress with your father John.

 

Nigel S

 

User
Posted 29 Oct 2014 at 14:45

Hi all,

 

A big thanks to you all for showing support and taking time to feedback. It's so reassuring that other people out there know what's going on! It seems you have all had very similiar experiences as our family have had on the NHS! It really is a disgrace in this day and age....

Anyway on a more positive light my Dad is now under a caring top team under a Prof Eeles at the Royal Marsden Hosp after we looked for a second opinion (not on diagnosis but treatments offered). He is on hormone treatment, and as prev stated this worked well bringing his PSA down from 280 to 1.3! He has now started chemo (docetaxel) and is suffering harsh side effects, as warned by his team. But we are willing to take these to take the fight to the disease. He is very strong but the chemical drugs are very potent. Our theory is, if it's going to kill the cancer now, and used in conjunction with the hormone (slowing and regressing the disease) it should, logically give him a better outlook in the longer term. In fact medical advise now, esp from the top of the senior medic staff (those at the top of their game) is: the use of multi-treatments side-by-side, a 'hit it hard' and fast, as soon as, no more wait & see care theory, gives better opp for positive results- which makes sense to us all. We will continue to look at new advancements in these areas and with gods help, his wil,l and sheer bodily strength and support - he will live out many more happy years.

One thing that puzzles me though is why they don't operate and surgically remove any affected lymph nodes and the actual prostate itself after the two treatments have shrunk the tumours? Would this not 'better' his outcome - remove the primary source of the cancer??

My personal hope is to now look for trials I can join to help the cause, catching it early and recognising any gene-interaction within the family links, i think BRAC1-2 genes and indeed others. I also have been PSA checked, against the advice of my local GP who say's I'm too young, but in the end agreed to go-ahead to glean a base-reading given my 'family history'. My PSA was 0.5, and reasoned as low-risk. I'll keep this record in mind and any raise i'll get further investigations, like DRE and or scans. I know now to take my health into my own hands and get a PSA test every year, a full blood test and an MRI every 2-3 years (privately). That's the plan.

Thanks so much for your continued support on here and sorry for the delayed reply, my Dad has been receiving his first chemo this week and wanted to be with him - holding his hand and trying to be positive. What struck me in the Chelsea wing of the RM Hosp, was all these ill people from a range of ages, with a smile on their faces. I don't know their individ circs or cases, but never the less, in my eyes they are all hero's and their families living angels!! The footballers and other idols that young people worship and we hear about on the news/media don't even come close. Please keep in touch, you all brought a smile to my face :) LOVE LIFE, LIVE LIFE!

 

 

User
Posted 29 Oct 2014 at 15:08

Hi Nigel,

Good that you have found us but suggest you start your own thread (conversation in this forum speak), so members may get a better idea of your situation and offer helpful comments. Most of us ascertain details of our diagnosis - PSA on diagnosis, Gleason score, staging and results of scans etc., as these become available and enter them under our profile. It can help if you research PCa and a good place to start is the 'Toolkit' on the main part of this Charity's web site. It is helpful to learn about various treatments and side effects as quite often it is left to the patient to decide which of several types of treatments he wishes to have.

Barry
User
Posted 29 Oct 2014 at 20:37

Johnnyr

Glad to hear your dad's treatment is underway.

Also very good to hear you are being proactive about your own health

As far as the GP's go who missed earlier dx.....well I am lost for words

Bri

User
Posted 29 Oct 2014 at 21:10

Hi Johnnyr ,

I know you feel like it's the end of the world. Most people on this site have been there, but there is still hope and a good quality of life after being diagnosed. I felt like you do 9 years ago when I was diagnosed, but look at my profile to see the various treatments I have had so to slow this down. Chemo is a bummer but hey ho it's worth it in the end.

Keep positive and continue to give your dad support.

Trevor

User
Posted 30 Oct 2014 at 10:12

Hi Barry,

Thanks for your guidance,I feel such an amateur at this game.

However I have at least entered my PSA and Gleason score and will add to this in due course.

I'm so impressed with Johnnyr,and his extraordinary battle on behalf of his Dad,John.

What a remarkable man he is...

 

Best Wishes

Nigel

User
Posted 30 Oct 2014 at 14:08
John

sounds like your Dad is responding very well to the HT which is good news, having chemo at this stage is also the route that I would prefer Oncologists used with such advanced cancer. Chemo is tough so being physically strong to start with really does help.

You have asked a question that I raised , why is surgery not offered to remove the sourse of the cancer? It is quite a complex thing to answer but I will try and give it a shot for you and I am sure some of the much more experienced members will add on. Once the cancer has spread outside of the prostate it has already started to mutate. The cancer itself is like a shift changer, it can actually create it's own food source it can also create its own personal vascular system and use this to transport itself. So removing the primary source would not necessarily help and the surgery can also cause all sorts of other problems ike incontinence. There is a line of thinking that suggests adjuvant RT to the prostate may be beneficial and this is something that is being trialled for some patients as an arm of the massive stampede trial.

Hitting the cancer hard and fast seems to be a good way forward, however these treatments are all very debilitating so using too much in one go would almost certainly be counter productive. There is also a need to retain some treatment options for later on bearing in mind that men with advanced metastatic disease will become castrate resistant at some point i.e using HT to deprive the cancer of its primary food source (testosterone) will cease to work when it mutates and starts to generate its own food source.

I think your Oncology team will do their very best to ensure that your Dad is getting the right balance of treatments.

Docetaxel chemo is pretty heavy hitting and given alongside HT will be quite a lot for your Dad to take on, a lot of Men do not complete the full 10 cycles indeed some oncologists think that after 7 or 8 here is not much more to be gained and prefer to keep this as another option to repeat later in the course of treatment.

One thing I would ask about is having a biphosphonate added such as Zometa, it helps to strengthen the bones and is sometimes beneficial in relieving pain from Mets. It is usually given as a transfusion which is adminstered at the same time as chemo.

Finally as your Dad already has extensive bone progression make yourslef familiar with all the symptoms and signs of Spinal Cord compression, a leaflet for this is uaully given to patients with advanced PCa so if you do not have one ask for this at your Dad's next appointment.

I really hope that you are able to keep your Dad with you for as long as you can, there are a number of people out there who defy this horrid disease even when it has advanced significantly.

Very best wishes

xx

Mo

User
Posted 30 Oct 2014 at 17:51

Mo is spot on. The short answer is that it would leave your dad with a whole load of side effects and a need to recover from major surgery when he is already weakened, without any real benefit.

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

User
Posted 05 Nov 2014 at 20:22
Hi

Any ideas what the norm timescale is for hormone resistance to occur? What happens then?

I'm wondering if anyone knows the answers to these questions: sometimes there's more questions than answers.

1. What will the chemo drug Docatexel do to the tumor - it inhibits it's replication process, so it won't grow but then I presume it will recover. What happens (bio-scientifically) after dad finishes his course?

2. If he can't continue the course of chemo can they stop it and re-start at a later date? This hasn't been discussed at consultations! If he does stop earlier will this have a counter-productive outcome eg worsen his outlook?

3. His immune system will also be severely weakened due to the cytotoxic drugs, does his natural immune response (killer T-cells etc) also fight with the Cancer or is not effective at this late stage?

4 . Are there any dietary tips to boost his ability to regain strength and carry on the good fight whilst on chemo??

Thanks all for listening and I'm continuing to pray every day he will feel less pain, and enjoy life. I also pray medical research can help find more answers in HIS lifetime!!!

God bless you all 😍

User
Posted 06 Nov 2014 at 19:59

 

"Any ideas what the norm timescale is for hormone resistance to occur?"

 

This often takes years to occur.

Chemo hits cells which are hormone responsive & non-hormone responsive hence the early usage may have good benefits.

"I'm wondering if anyone knows the answers to these questions: sometimes there's more questions than answers.

1. What will the chemo drug Docatexel do to the tumor - it inhibits it's replication process, so it won't grow but then I presume it will recover. What happens (bio-scientifically) after dad finishes his course? "

True the cells can adapt but how quickly varies a lot. Sometimes a second-line chemo is used but quite often HT treatments suffice for some time after chemo.

also

Depends on chemo response. Which might be slow or fast.

"2. If he can't continue the course of chemo can they stop it and re-start at a later date? This hasn't been discussed at consultations! If he does stop earlier will this have a counter-productive outcome eg worsen his outlook?"

Yes , this can happen although second round of same protocol sometimes less effective. Better to change protocol in some cases.

"3. His immune system will also be severely weakened due to the cytotoxic drugs, does his natural immune response (killer T-cells etc) also fight with the Cancer or is not effective at this late stage? "

Unfortunately the bad cells harness immune system cells. But keeping up the immune system helps the body cope better with other problems such as infections.

"4 . Are there any dietary tips to boost his ability to regain strength and carry on the good fight whilst on chemo?? "

Avoid inflammatory foods & eat anti-inflammatory foods. You can research anti-inflammatory foods on the Net.

User
Posted 09 Feb 2015 at 19:52

Hi

 

What is adjuvant RT as you've stated in your previous mail.

Thanks.

John

User
Posted 09 Feb 2015 at 20:35

Hi all,

Here's an update on my Dad, I want to let you guys know as you've really helped me, in so many ways! Hearing your own personal stories, from the heart makes it real and it makes us feel so much better, knowing options and what's out there in the arsenal to use against his advanced PCa.

His midway set of results (MRI/CT bone scan/Blood tests and PSA) all showed a containment of the disease and in some areas of mets, a reduction in tumour size from 24mm to 14mm (Lymph nodes in pelvis). His PSA results have steadied at 0.3 for the last 2 chemo sessions, although we are still awaiting the last set, taken over 5 weeks ago (My Dad fears the worse -he's naturally hung up on these results every time!!). He equates these to whether it's working or not, which is true (theoretically) but not always painting a true picture as what's going on...?

PSA from 275 at diagnosis in September 2014; to 7.0 after Hormone therapy then to 3.0 and 0.3 on the last two occasions, not including the latest (29th December 2014).

So, the official diagnosis from the Royal Marsden is the Cancer is being contained (no evidence of growth, and in some areas it's reducing)., at the halfway stage or 3 of 6 chemo sessions. We have the last chemo next Thursday and then the team will again apply the end-of session tests, as above, to ascertain it's overall success. Fingers x'd and all the luck in the world we can muster - will hopefully deliver good news! God only knows this brave and loved kind man needs something to cling onto, he has got such a lot going for him - a new member of the family soon to be born, his 70th birthday, seeing his brothers & sisters again in Switzerland etc etc.

Anyway, thanks for keeping up and reading on so far...

Chemo has been tough on him, with the usual 'explained' symptoms, and indeed cycle 2-3 was the hardest hitting, producing some real tough days. He's generally battled through it, remaining active, eating (good foods), and not (luckily) picked up anything nasty. He has the odd bad pain day, and in different areas but the pain has not been really the issue, the latest symptom has been the oedema and puffiness on his leg/feet and face??

He has had some strange unexplained symptoms so far, some weird, that has panicked him into thinking the hormone therapy is not working any more, like, sexual thoughts, erections, and both testis growing back in size. Only one incidence but nonetheless enough to question, just how long has this treatment got left before it's overrun by the clever PCa? I have done some research but can't find anywhere, any suggestion it is.

Our obvious concern is was this the right course of action to take, and I suppose only time will tell. The results (mid-March) will give an indication as to whether the cancer has been sufficiently mauled by both treatments to give him many more years... We pray. The other thing is what happens next? Can we not see whether the team will try and attack the disease from another angle - with Radium 223 to kill-off the bone mets? I just don't know what next...

I would welcome some advice or thoughts, maybe your own experiences...

Our families thinking is: Keep on same track - close monitoring - change/development - alter hormone therapy for alternative - change/development - new treatment etc. This cycle. I have read also that if the PSA reading rises above base rate at post treatment with +2.0 (in My Dads case 2.3) it's an indicator the hormone testosterone-blocking therapy is no longer working against the disease..

Much love. JR :)

User
Posted 09 Feb 2015 at 20:43
Hi, sorry you need to be here. I am met but mercifully just prostate and lymphs. I was diagnosed oct 2014 and am at Marsden. I am on zoladex and Biclutamide and have had session 2 of 6 x 3 weekly chemo 6 days ago. At the end of that I will have a month off and then have 6 x 1 weekly big zaps of RT on my prostate. Doc says that should have cancer as small as it will get and then like your dad I will be waiting for ht to stop working. I don't think there is any good answer to when, some it never works for, others get 5 years. At that time ( being positive) they would use 2 nd stage drugs and perhaps re chemo however there is a real belief that there will be something else to help coming on stream by then subject to cost of course. My cons said it would be irresponsible to remove prostate when mets as so many downsides and minimal up if at all.

Someone posted on your thread about nhs v private, private opens up all approved drugs whereas nhs relies on tried and tested and cost benefit/ availability of funds in the cancer drug fund, really hit and miss and appallingly beuracratic with no concern for positive time outcomes.

Similarly, I saw same consultant as you last week re gene test, was told that it will cost me £900 apprx as nhs won't pay as only a 2% chance of finding a benefit , apparently they will pay when it's 10%+ chance.

I am very lucky to date, I am only 49 and run lots, I ran 7 miles tonight in an hour dead and felt fine, I know others are not so lucky.

As for good, both the cons you saw and my other cons both said strong evidence that all men and women should take vitamin D every day, 1000 units, especially in the winter as it boosts immune system, both said all other supplements have no strong supporting evidence, both cons are heavily into research and I trust them. They also agreed that 6 cups of green tea ( decaf if poss), pommegranate juice, tomatoes ( cooked or sauce), walnuts, broccoli/ cabbage/ celery, limited red meat, don't cook in vegetable oil, not too much dairy all showed some evidence of improved health generally and some PC benefits possibly.

The above is only what I have gleaned and now act upon over the last 3 months, I don't see a down side to having more veg, less red meat and fat, my running is only 10% slower to date on it and that is probably cancer/ ht/ chemo.

Hope that helps, message me if you have any specifics if u like, your dad is lucky to have a son like you, you are the hero as your dad like me has no choice but you do, he must be immensely proud and reassured to know you are there for him.

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 10 Feb 2015 at 06:44
Hi Johnny, sorry I was typing my response above as you were updating so much you covered off, apologies, Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 24 Feb 2015 at 12:38

Thanks so much Kev. Your last message meant a lot to me....

I feel so helpless all the time!!

I guess my Dad would want me to be strong, and only positive and think of the 'now' not too much looking into the future...

Keep me posted regards your journey and stay healthy/strong.

 

PS running helps me too!

John

User
Posted 24 Feb 2015 at 20:36
Hi John

I can't speak for your dad but personally my wife who is very supportive only wants to look at the up sides. Whilst that is her way of coping and I would not want her to dwell on the worst cases I would also want her to be a bit more average on expectancy.

I had my 3rd round of chemo today and my consultant said when asked that the average time for zoladex to stop working was 18 months, a bit shorter than I previously understood however there are options afterwards. I had absolutely no noticeable side effects last round apart from tiredness when going up stairs/ slopes and hills.

I am still running, did 16 miles last Thursday , slow, hard but totally envigorating.

I wish your dad and you well

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 20 Jun 2015 at 23:08
Hi john

I've read through your posts for the first time today. Both my father and my husband have prostate cancer- my husband caught his early last year (through no help of the GP, who had a high blood test for six months and did nothing about it), my father did not. My dad was diagnosed with local spread in 2001, and is still fit and healthy.

Something that has struck me about your post. One thing that both my brother did when my father was diagnosed, and my husband's brothers did when he was diagnosed was to go and get tested. Immediately. I know you have other things on your plate, but with your history I would Insist on a yearly blood test. Pay for it if you have to, but with your family history I'm sure they will see the sense.

Louise

 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK