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10 Rounds and Not Out

Posted on 5th April, 2019

Hi amazing famiy, friends and followers,

 

A fair bit to update you on since my last update.

 

After much deliberation and discussion with family, I decided to complete the scheduled 10 sessions of chemo. It appeared to be 'doing something good' as my PSA blood results continued on a downward trend. I would be telling lies if I said it was easy, it certainly was not. The cumulative effects of the chemo were totally draining and many of the side effects worsened after every cycle.  The fatigue was the worst, it was an effort doing even the most simple and mundane of tasks. My appetite was poor, I had a horrible metal taste in my mouth, my nails started to fall out, my feet were constantly numb and I was looking very baldy ( like most of my mates :>)

But with loads of rest and amazing support from Marydoll and the rest of the family, it certainly loosened the load.

 

 

Unfortunately, and as per the trend graph above, my PSA has ( not unexpectedly ) started to rise again, albeit not too rapidly as yet.  My PSA is now at 80.2 and because it had risen above the upper threshold of 65 for the Procaid ( AZD 5363 ) clinical trial I was on, I was taken off the trial. More about future trials later in the post.

 

During this period, I didn't just sit on my butt all of the time ! We still managed a number of visits over to our static caravan in Arran, got out for a few nights with my mates, met up with my prostate cancer buddy Jim in Glasgow, meals with family and a fantastic corporate day at Ibrox with Marydoll, Jonny and wee Jamie, courtesy of the Rangers Charity Trust. This was an amazing day where they fed and watered us, watched a game from the comfort of a suite and got to meet some of the players ( old and new ) and was topped off by a visit up the marble staircase to the blue trophy room ( unfortunately most of the trophies have just been gathering dust over the last few years :>(

 

                         

 

 

Wee Jamie had ( in his own words ) his best day ever and he got his photos taken with Ryan Kent, Borna Barisic, Andy Halliday, Wes Fotheringham and Nacho Novo.

Wee Jamie looks like a 'mini me' with his smart suit on ♥

 

 

 

Great times, but unfortunately I had a bit of a set back a couple of weeks ago !

I had an acute numbing pain in my left leg and after trying to ignore it for 24 hours,

finally agreed for Marydoll to take me to hospital after it got a lot worse and wouldn't

support my large ( ish )  frame !

So into the combined assessment unit at Crosshouse hospital where very quickly they sent me for an xray and MRI scan of the spine.  Good news was that it wasn't spinal cord compression !

I got moved up to the general oncology ward where I had to bed rest until I could get a further MRI scan on my left femur. 

However, I did manage to escape for a night, where one of the nurses, in conjuction with the duty doctor, organised a pass for me to go along to my Sister Fiona's house where the family had organised a surprise birthday party. This was on the proviso that I used a wheelchair while I was out ( huge thanks Moira for the loan of your Dad's chair ).

 

 

I finally got the 2nd MRI scan on my 8th day in hospital. By this time I was getting a bit stir crazy and discussed setting up an escape commitee with some of my chums in the ward.

It was like something out of 'One Flew Over the Cuckoo's Nest' :>)

I met some lovely folks in the hospital, including a sailor, farmer and a main stream rock star from the 80's.  ( Stevie Cusack from Sniffing the Pink....check out some of their stuff on iTunes, definately worth a listen ). Hope you are getting much stronger now Stevie.

The nurses were amazing, great fun, so supportive and nothing was ever too much bother.

I don't know how these guys can do this every day and still keep so positive with a smile on their face. They literally are 'Angels'.

 

 

The 2nd MRI scan picked up more cancer tumour deposits in my left femur causing nerve pain. This, believe it or not, was good news as a fracture was suspected. ie, tumour growing in the bone and splitting it....ouch !  So no procedures required for now as the pain is totally under control.  Must have been lots of bed rest, pain killers and pampering :>)

 

As I mentioned in a previous post, I have now exhausted all the 'standard' NHS treatments

so trying to get onto more clinical trials is the path forward.

I am currently been considered for 2 trials :

1.  Immunotherapy where previous biopsies I had taken are being analysed to determine if I am a match ( approx 30% chance )

2. PSMA Luticimide where I have around an 80% chance of being a fit then a 66% chance of getting the cocher treatment ( as opposed to placebo )

Hopefully I will find out more in the next few weeks.

 

Well this has been a bit of a rant this time, but need to mention a couple more things before I close out this post.

 

My daughter Cara is running the London Marathon in aid of MacMillan Cancer Care.

She has never even run for a bus before, so this should be interesting :>)

Cara is nearing her donation target, so if you can afford a few bob to help her get over the line, it would be most appreciated.

 

https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?pageId=1011110

 

And I can't close without mentioning again the amazing love and support I have received

during this rather arduous journey. Especially for my 'wee rock' Marydoll who should have been a juggler in the circus !

Along with looking after 'yours truly' and working, she has also found the time and energy to complete her training for the Scottish Children's Panel.  This is for volunteers in Scotland who support vulnerable children and young people and their families in their local communities. Well done Marydoll and to my son-in-law Jamie who has also just completed his training.

 

Only 3 weeks now until our family adventure to EuroDisney. I can't wait to see their beautiful wee faces light up with excitement :>)

 

Well thats all for now folks.  Keep well and happy xxx

 

 

Hi amazing friends and family,

 

My daughter Cara is running the London marathon on April 28th 2019 in aid of Prostate Cancer research.

 

Please sponsor her to hopefully help eradicate this nasty disease for the generations to come. Even just a couple of quid if you can, every penny counts.

 

https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?pageId=1011110

 

nb. Cara and I can go halfers on a wheelchair after the run, sure she will need it anyway :>)

 

Cheers, Grahame

Disappointing news, but not unexpected !

Posted on 21st January, 2019

Hi family and friends,

 

I have now completed 8 of my 10 scheduled chemotherapy sessions and to be totally honest, it is now proving to be a something of a challenge !  I am constantly exhausted and have little or no energy. Recovery times are taking longer now after each treatment and the side effects are increasing.

I had an appointment with my oncology professor last week and the bottom line is that he has advised me to stop the chemo treatment and concentrate on quality time with my family and friends. All convential treatments have now been exhausted and it is now about trying to enjoy the time I have left without the horrible side effects.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Although the chemo has resulted in a substantial reduction with my PSA count and even a slight improvement with the cancer in my bones, it is just keeping me in 'limbo' ! 

There is only one site where the cancer has spread and this is on my bottom left rib cage where unknowing to me, I had fractured a rib after a fall and the cancer has attached to the site !

 

Unfotunately when the chemo stops, the regression is usually quite aggressive !

My Prof is now talking months rather than years and has given me an estimated 50% chance of still being here in 9 months and a very small chance of lasting a year.

Not great odds, but I am in the habit of 'bucking the trend'.

The fight continues and I am certainly not throwing in the towel just yet :>)

 

Now it will be one day at a time and concentrating on planning for when my energy levels hopefully improve.

 

"I can't control what time I have left but I can choose what to do with it"

 

I have booked a trip for all my family ( x15 ) to go to Disneyland Paris for a few days at the end of April and only yesterday purchased a lovely static caravan overlooking the Holy Isle on the Isle of Arran.  Really looking forward to spending more happy and relaxing times in Arran with my family and friends ( Marydoll and my favourite place in the world :>). 

 

My daughter Cara is running the London Marathon on the 28th April to raise awareness and donations for Prostate Cancer research. I will share more details when I have them and hopefully cancount on your support, no matter how small.

 

During my long battle with this nasty disease, you have left so many lovely and uplifting messages, so please don't feel obliged to comment again. A simple 'like' on Facebook is more than enough.

 

Again as always, I am sure I wouldn't have lasted this long had it not been for all the incredible love and support from all my family and friends, especially my wee Marydoll who is my rock.

 

Take care and keep well and if you are a male of a 'certain age', get down to your local GP NOW and get yourself checked out.

 

Chemo and Clinical Trial Update

Posted on 21st October, 2018

Hi all,

 

I have now completed cycle 4 ( of 10 ) of my chemotherapy and clinical trial ( Procaid AZD5363 ) medication, so thought it was time to share a quick update.

There is no doubt about it, Chemotherary treatment is tough !  It takes the wind right out your sails and feels like a terrible hangover ( x 10 ) ! 

My worst period is from day 3 to day 6 or 7 after treatment, where I have been totally wiped out, exhausted, feeling really 'yucky' and have a horrible metallic taste in my mouth and nearly all food / drink tastes the same !

The good news is that from day 8 onwards, things start to improve quite quickly and near normality returns. I have been plotting trends for each 21 day cycle so far and included it in the graph below. ( the totals are built from daily scores for pain, sleep, stiffness and general feeling where 20 would be the max score ).

I lost a lot of my hair after the first cycle, but this has slowed down and I still have more hair than most of my old baldy mates :>).  Pain control and sleep have been good.

So far, I feel quite lucky that I have generally tolerated the treatment very well, compared to many other men I have talked to.  There is also the Procaid trial, a 50% chance that I am on an active drug rather than placebo. This may be helping a bit ? 

My Consultant Oncologist informed me that a lot less than 50% of men manage to complete the 10 chemo sessions due to the severe side effects, so this has given me the challenge to complete all 10 and get the averages up a bit :>)

  I have also included a picture of the last nuclear bone scans I had taken.

The 2 images on the left ( slightly different angles ) were before I started the Radium 223 treatment and the 2 images on the right after the Radium was finished and just before the chemo started.

You can see how aggressively the disease has progressed, the worst of it in the lower spine and pelvis and even in the face !

 

 

 

 

 

 

 

 

 

 

 

 Now for the good news. My PSA blood count has dropped significantly since I started the chemo ( and trial ? ) , so it is doing 'what it says on the tin'.

I have included a PSA trend graph below which includes the treatment I was having when my PSA bloods were taken. Most of the drugs did nothing or very little, but you can see a huge jump during my Radium 223 treatment followed by the very promising downward trend on the chemo. If I can get this count down to double digits, it would be amazing.

 

 In the last few weeks, we have managed a trip down to London to catch up with family and some good old BofA friends. We also managed a week in Tenerife to enjoy the Autumn sunshine and just do nothing for a week with our good friends Tommy and Julie :>)

All my 'wee people' continue to keep me busy and put a big smile on my face, wouldn't swap it for the world !  And Marydoll  ( should be Saint Marydoll ) for being the best and most caring wee wifey in the world  ( Love you millions ).

 

As always, a huge thanks for all your good wishes and support which is so valued and appreciated and remember guys, any changes in toilet frequency and/or sexual changes, please please get it checked out. It is free and painless !   ( Wives, partners...do your bit )

 

Let the battle continue, bring it on :>).

Chemo and clinical trial started

Posted on 18th August, 2018

Finally got accepted for the 'Procaid' clinical trial after borderline ECG heart rythm tests that had to be redone a few times to meet the criteria !

 

As I commented on my previous post, the trial involves 10 cycles of Docetaxel chemotherapy ( 3 weeks apart ) at the Beatson in Glasgow, where 50% of participants are randomly selected for AZD5363 which is a new targeted therapy designed to interfere with a cancer's ability to grow by blocking growth signals in the cancer cells ( ProCAID trial phase 2 ).

 

I don't know if I am on the drug or on the placebo ( neither will the Professor ), so fingers crossed.  Also on steroids now to control risk of infection etc.

 

Docs decided against further targeted spinal radiotherapy and bone strengthening infusions for the moment as hopefully the chemo will do the trick for now.

 

Feeling pretty 'shitty' before the trial started, tired and exausted ( as seems to be the norm now ! ) and increasing lower spinal pain and discomfort. My PSA has shot up to 462 ( I remember being concerned when it reached double figures ! )  Having said that, very few other problems and a recently increased dosage of 24 x 7 morphine keeping the pain under control the majority of the time. 

Anyway, now 3 sleeps into the Chemo and 'trial' and so far so  good.  Feeling much the same, albeit a bit spaced out ! No sickness or diarrhoea, but the latter would be welcomed for a 'guid cleen oot' for the morphine induced constipation :>)

However, all much better than I anticipated.  Early days yes, but long may it continue.

 

The organisation, communication and staff at the Beatson clinic in Glasgow has been exceptional and I certainly feel that I am in the best hands possible.

 

Still enjoying the simple things in life, family time and managing to keep positive. Unfortunately alcohol is not agreeing with me so I prefer to do without, so don't need to toss for who is the driver anymore!!!

Walking the dog is now more of a challenge but Maydoll keeps him well exercised!

Most days I feel too tired for exercise.

 

Looking forward to Tenerife in October and days here and there in the camper van.

Was hoping to be in France this weekend for Magali's wedding ( our amazing au pair from our London Days ), but treatment schedules have prevented us from travelling just now.

Wee Keira starts school ( 4 grandkids down, 2 to go ) and Cara starts her new job in Whitehall on Monday.   Loads to look forward to.

 

As always, a huge thanks for all your good wishes and support and hopefully many more blog updates to come.

Short update....................

Posted on 17th July, 2018

Hi amazing friends, family and blog followers,

 

Just a very short update before next treatments commence.

 

I met with my Oncologist Professor last week, some not so good news but some promise regarding clinical trials.

A couple of days before my appointment, I had a nuclear bone scan. Although it was too early for the report to be written, the professor was able to access the pictures ( in black and white, no colour :>). Not great news, the bone metastasis has deteriorated significantly, especially in the lower spine and pelvis and has spread to other areas. I have a CT scan tonight and hopefully there has been no spread to my organs.

 

Plan of attack is a short burst of radiotherapy treatment to my spine to try and alleviate the discomfort,  followed by me starting on a new trial.

The trial involves 10 cycles of Docetaxel chemotherapy ( 3 weeks apart ) at the Beatson in Glasgow.

50% of participants are randomly selected for AZD5363 which is a new targeted therapy  designed to interfere with a cancer's ability to grow by blocking growth signals in the cancer cells ( ProCAID trial phase 2 ).  I won't know if I am on the drug or on the placebo ( neither will the professor ), so fingers crossed.

After the chemo has completed, I will also be considered for an immunotherapy trial. However, I only have a less than 30% chance that my geno/dna will be a fit so I might not even be considered - but watch this space ( feeling lucky ! ).

 

So not all doom and gloom and really cheered up as wee Cara is up for a couple of weeks working from home.  Great to see her and all her lovely friends that come by to visit.

And what about the weather in Scotland. Never had such a good tan and look like the healthiest guy in sunny Salcoats :>) 

 

 

Radium 223 treatment finished

Posted on 26th June, 2018

Hi amazing friends and family,

 

I thought is was time for a quick update now that my Radium 223 treatment has finished and I had an appointment with my Consultant Oncologist earlier this week. The service from the Beatson Glasgow was excellent, caring and extremely professional.

 

My spinal pain has subsided a bit following the treatment but most days it is still very uncomfortable. My biggest challenge at the moment is tiredness and exhaustion, caused by the medication, the pain relief and the cancer itself.   On the brighter side, I am still able to do most things as long as they are not too strenuous and I can get a wee lie down afterwards :>)

My appetite is now very poor ( even for hot curries ! ) and I have lost around 2 stones since the start of the treatment, maybe not a bad thing !!

My PSA blood count has also risen quite sharply to 227 and has 'doubled' in the past three months.  Good news is that my bone profile blood counts have improved and they are now within the 'normal' ranges.

 

So what next ? ......................................

 

A nuclear bone scan and a CT scan have been ordered.  This will enable a comparison from the scans taken before the Radium 223 started and will determine if the bone metastasis has improved or deteriorated.

As far as treatments are concerned, it is only chemotherapy that is available to me now as I have had every other available treatment that is on offer for the stage of the disease that I am at now !

However, there is a possibility that I could be invited to take part in a clinical trial and have an appointment at the Beatson in a couple of weeks to discuss options and determine if I would meet the trial criteria. Watch this space.

 

There was a recent documentary on BBC called the Cancer Hospital. This was an excellent and very informative documentary where episode 2 ( of 3 ) concentrated on different stages of Prostate Cancer .

Very close to home for me as all the experts / presenters are the team that directly look after me, and what a team they are.

Unfortunately I didn't get a chance to launch my acting career, but hey ho, the men that took part were all very open and brave.

Definately worth a watch on BBC iPlayer or via the Youtube link I have added below.

 

https://www.youtube.com/watch?v=dH1AW-GHjHo

 

Its not all been doom and gloom, Marydoll and myself have managed short breaks in Tenerife and Spain and hoping to go back up to the North of Scotland in the van in the next few weeks.

We have a Roger Waters concert to look forward to on Saturday night at the Hydro in Glasgow, can't wait.

As always family and friends help keep the spirits up and all my 'wee people' constantly keep a smile on my face :>)

 

As always, huge thanks for all your support and especially to Marydoll who watches over me 24 x 7.

 

Just to say a huge thanks .....

Posted on 31st March, 2018

Just to say a huge thanks for all your support and lovely comments.

 

My Blog has now had in excess of 10,000 unique visitors. So this proves it has caught the attention of lots of people who have been touched in some way by this horrible disease and by others who are just looking for some more information or maybe some early signs.

 

Remember guys, if anything changes down below, not matter how small the changes ( ie, more frequent toilet visits, waiting longer to pee, changes in penis size and clear or no semen ), please make an appointment with your doc for a simple PSA blood test ( and maybe a finger up the rear end to follow !! ).  Wives / partners, take the lead !!

With very early diagnosis over 90% will beat this disease.  By the time I was diagnosed, the cancer had already spread outside the prostate, making it much more difficult to beat !

 

For all of you who have left comments on my blog, I will post a reply under your comment.

 

Again, I am totally humbled by your support. Thanks from the bottom of my heart ( or even the heart of my bottom in this case :>)

 

 

Still Kicking :>)

Posted on 12th March, 2018

Hi amazing friends and family,

 

I had a Consultant visit last week and I am now half way through my Radium 223 treatment ( 3 injections so far ) , so thought it was time to add a short update.

 

In general, I am now a lot stiffer all over and have significant  lower back pain.

Also, feeling very tired and exhausted most of the time, but still managing most things and keeping my spirits high.

 

I was hoping the Radium would ease the spinal pain, however I have been advised that it can take around three months to have any effect. The way it feels is like carrying a 'rucksack' on my back all day, sometimes full and sometimes less heavy !

 The plan now is a further MRI scan to see what is going on with my old spine and then further bone scans etc when  Radium 223 treatment finishes on June 6th.

 

We are now no longer concentrating on my PSA blood count number (which is 115) and focusing attention on my bone profile readings (ALP) which gives a more accurate reading whether the radium is having any effect. I am expecting my PSA to continue to rise on this new treatment which is strange having spent the past few years trying to get my PSA down!!!! 

The good news is that my bone profile and other blood results ( excepting PSA ) are all good just now and within the 'normal' ranges.

Have also now had to accept the idea of taking regular pain relief,  having been very stubborn over the past year or so and not wishing to take anything stronger than Paracetamol and Co Codamol !  I am now on  Morphine (fairly low dose) and I am already feeling the benefits. (As always Marydoll was right in insisting that I needed stronger pain relief !!)

 

We have managed a couple of holidays visiting Prague before Christmas and also a Cannarian Island Cruise in the New Year. The cruise was a complete washout as it rained for 7 full days so no sun to help my old bones !!

 

Never mind, shall just need to plan another wee trip soon to find some sun.

 

Got a couple of nights over in Arran in Vicky and Scott's new house with my mates next week and Katie and Jamie move to their new house in Bridge of Weir on Thu 29th March,  so plenty to keep us going and of course all my favourite 'wee people' who always keep a smile on my face.

 

 

 

 

 

 

 

 

 

 

 

Poor wee Marydoll, missing her work and having to put up with me 24 x 7.  She deserves a medal. Love her always xxx

 

Next phase of treatment.....

Posted on 21st December, 2017

Hi All, a fair bit to report since my last blog update !

 

I visited my oncologist last week, where she gave me an update regarding recent scans and blood tests.  In the areas the bone metastasis had previously been identified,  there has been significant growth. However, the better news is that is has not spread to any new areas in my bones. There was also a new 1 cm growth identified in my lymph nodes in my groin area but my consultant didn't seem too worried about this which is good enough for me :>).

 

My PSA blood count continues to rise so my consultant has taken me off the Abiraterone treatment. I was given the choice of Chemotherapy or Radium 223 injections and after much discussion and debate opted for the latter treatment.

 

Radium 223 is a type of internal radiotherapy. It is a small amount of radioactive material that is taken up by active bone cells in a similar manner to calcium. Cancer cells are more active than bone cells and so are more likely to pick up the Radium 223 and hopefully slow down the cancer spread with the added benefit of providing pain relief.

So its off to the Beatson clinic in Glasgow starting in mid January for 4 weekly injections for the next 6 months.

 

In general, I have been feeling increasingly tired and exhausted and although not yet in acute pain, very uncomfortable and stiff most of the time.

 

  On a much cheerier note, our beautiful daughter Katie had

  her dream wedding to 'big' Jamie on December 1st.

  My three daughters were absolutely stunning and the page

  boys and flower girls were just amazing. It was a truly

  fabulous day shared by family and freinds.

 

 Hopefully 2018  will bring more advances in stage 4 prostate

 cancer treatment.

 Not giving up  the fight yet and looking forward to some nice

 holidays in the year ahead.

 

 Wishing you all a very Merry Christmas and a Happy,

 Healthy and Prosperous 2018.