Big G's, Big C Blog

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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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Treading water !!

Posted on 22nd November, 2017

Not a huge amount to report at the moment so just a short update.

 

My PSA blood count is continuing to rise so it looks like the Abiraterone treatment is not working for me.  I have had recent nuclear bone and CT scans and will discuss the results at my next Oncologist consultant appointment on December 15th.

 

If the CT scan shows no metastasis to my organs, the probability is that my consultant will take me off the Abiraterone and put me onto Radium 223 treatment to hopefully slow the tumour spread in the bones. This will entail 6 monthly visits to the Beatson for Radium 223 injection.s

 

Although I am still not in a lot of pain, I am getting stiffer by the day and getting more exhausted and tired !!

 

On a brighter note, off to London this weekend with Marydoll to see wee Cara and meet up with all my Bank of America mates for a reunion and a good few wee swallies :>)

 

Then next Friday ( 1st Dec ) is Katie's wedding which we are all really looking forward to.

 

Keep well and happy and I will put a more comprehensive update on my blog after my next Oncology appointment.

 

 

 

 

Still hanging in there......

Posted on 12th September, 2017

A wee while since I posted an update, apologies for that.

A bit cloudy in the South of France so got lots of time today :>).

 

Keeping pretty well on the whole but the 'not so good' days a bit more frequent now. Get tired and exhausted without doing too much and muscles and bones very stiff and a bit sore now. Also very easily frustrated and can get a bit grumpy at times ( according to MD ! ).

Testosterone forced down to zero is sole destroying, in a number of ways !!

 

I definately notice the difference from last year when we drove down to the South of France around the same time. The French drivers aren't getting any better either !!

 

Been on the Abiraterone and steroids now for a few months but unfortunately my PSA blood results are still rising !  However, in some cases it can take a wee while before it starts producing results, so not time to give up on it just yet.

I found the 2 week consultant appointments a pain, inconvenient and a constant reminder of the disease, so I got them to agree to not seeing me for a couple of months. Hopefully by then I will have a better idea if its time to move onto something else, probably Radium 223 and/or Chemo.   Also can get some decent holidays in :>)

 

   Marydoll has now officially retired after 38 years in the NHS to

   spend more time with me and look after me! ( poor lady having

   to put up with me 24 x 7 now ! ), so we should be able to get

   away more often.

 

   We are currently in Le Barceras, close to the Spanish border  

   and plan to stay here for around 3 weeks.  In the first week,we

   had Vicky and Scott and the 4 rug rats plus Katie and Jamie

   with us.  Cara also joined us for a week before heading back to

   London to start her new job with Thomson Reuters in Canary

   Wharf.

  

Had a fantastic time with all the family, just a pity Jonny, Marie  and the boys couldn't join us to complete the set !

 

Just Mary, Floydy and myself now, peace and tranquility :>)

 

   

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Lots in my bucket list still to do and looking forward to my gorgeous daughter Katie's wedding to big Jamie on Dec 1st at Loch Lomond.

Thanks to you all for all the lovely messages of support and keep happy and well.

Big G xxx

A bit of good news today....

Posted on 4th August, 2017

Hi all, hope you are well.   A bit of good news to report today.  Got the results from my recent CT scan and the cancer has not spread to any of my vital organs :>). Also, my blood results are normal regarding liver function etc, which means that there are no nasty reactions to the Abiraterone and I seem to be tolerating it very well. Will get PSA results in a couple of weeks, so hopefully the Abiraterone is doing its job and keeping the numbers down.

So its celebrations all round as Mary is formally retiring today and we are looking forward to spending more quality time together ( hopefully in many hot and tropical places :>)

 

  Had a great weekend recently down in London, where I went to  

  the Pink Floyd exhibition in the V@A museum which was amazing, 

  followed by a brilliant Bank of America reunion night in Croydon.

  So great to catch up with many old friends and colleagues, fantastic 

  night.

 

To continue the Pink Floyd theme, I ticked of another thing on my bucket list and got a couple of Pink Floyd tattoos.  Still an old rocker at heart !!

 

 

 

 

 

 

 

 

 

Keep happy and well and will post again in a couple of weeks.