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 :>).

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Comments (17)

Hey Grahame !
Just a few words to let you know I am still following your blog and thinking about you !
Take good care ! You'll need plenty of energy for the coming holiday with this gang of grandkids :)
Berengere
Great pleasure meeting and chatting with you Graham , even more so as we have same Cancer almost in all same places so we can check up on each others progress . Take car your Friend Jim

Grahame : And great meeting you Jim. Yep definately and I am sure we can keep the staff on their toes in the Beatson :>) We can battle this together.
Take care, keep well and see you in a couple of weeks.
Al the very best, Grahame.
Spreadsheets and graphics eh? A language close to my heart ;o) Love the way your humour continually shines bright through all of this. Keep on thinking those positive thoughts, and, as we say at all the Excel parties I attend weekly, 'long may your graphs continue to plummet'.

Yes we do........honest :o)

Grahame......Hehe cheers John, thought you would like the spreadsheets and graphs.
Take care and hopefully catch up before too long.
Hi Graham,
You are an inspiration to us all, your sense of humour shines through always. We wish we could be there for you like you and Mary were for us. Keep fighting, we’re proud to know you and your gorgeous family. Always thinking of you.
Much love xx

Grahame : Thanks so much Mandy. Haven't seen you guys for a while, hopefully catch up before too long. Take care xxx
Hi Graham.
Its Gary, Jonathans friend from toddlers. I had cancer myself although i was lucky in a way as it was testicular cancer and they offered treatment etc but i opted to have it removed a.s.a.p to avoid any spread. I had 3 bouts of chemo after the removal just to avoid any lingering cells from travelling elsewhere.....I am now 16 months into remission. Although after my scare with Cancer i was taken back in 4 months later with a life threatening heart condition diagnosed as "Torsades de pointes" at which one stage my heart rate was over 300bts per min. It is with me for life and can kill at any given bout. I lost my mother (Sandra) 4 years ago on Oct 15th to cancer also so i have both lost and went through it myself. Then they say it comes in threes as about 3 months ago i was back in with 2 clots in my right lung. Just had a Ct scan last Thursday so fingers crossed all is good. Currently though my dad (Davie) is in hospital in the critical care unit with Chronic Bronchitis/emphysema and C.o.p.d and in both a state of confusion and complete breathlessness. Not a good past 18 months for sure. Just have to keep my head high as on November it is my daughters 16th and my son,s 18th and they are the light of my life and gave me all the fight and reason to stay positive in my darkest moments. I, both commend and salute you for your blog which you have bravely shared with the world. I wish you all the best and you are in my thoughts. Still remember you bringing your camcorder to me and Jonathan,s football matches with Boys Brigade back when the two of us were just kids ourselves. Please take my sincere best wishes and that comes from rest of my family Graham. Take care,stay strong and keep fighting the fight my friend xxx
Gary Grant.

Grahame : Hi Gary, So sorry to hear that yourself and family have had such a rough time of late. It can't be easy with your Dad being so poorly in hospital along with all the horrible things that you have to live with every day yourself. God, you have been through the mill, cancer, heart disease and clots. You are obviously a very strong guy and will get through all of this and out the other side. Stay positive for your Dad, kids and the rest of the family and this won't beat you.
I remember these days well, watching Jonny, yourself and some other of your mates playing footy over the park. Doesn't really seem that long ago ! Happy days.
Keep strong Gary and love and best wishes to you and your family. Grahame x

Uncle Graham I’ve just read your blog and I’m truly inspired and touched by your words. I think you are the bravest man I know ( well you and my old man but I have to say that 😜) Keep fighting hard mate. We are all rooting for you. Much love

Eddie x

Grahame : Cheers for the kind words Eddie. We all know your Dad is totally amazing, and inspiration to us all. All the very best, Uncle G x
Your positive attitude certainly seems to have you heading in the right direction stay strong Grahame,from one of your
old baldy mates!

Grahame : Cheers baldy :>) Take care Kenny, hope you and yours are all well x
Jockey

Keep fighting it, thinking of you and Mary and the family.

Mike

Grahame : Cheers old pal, hope you guys are well.
Thanks for the update Jox- really pleased to hear that everything is going in the right direction, albeit not as quickly as we all would like. Stay strong (I know you will) and hope to see you sometime soon πŸ‘πŸΌ

Grahame : Cheers Johnsie and thanks for the kind words. Hopefully get down for the Winter reunion and have a good catch up x
That's fantastic news Jockey - you truly are an amazing man!

Grahame : Huge thanks Georgia. Love to the family xxx
Oh Dear! I am so sorry for all this happening...nobody should go through this!
It is so nice yo read your positive thinking and you make it sounds like it is no big deal...i wish with all my heart all the best things in the world may happen to you and your amazing wife, daughters and family!
thank you for your blog and the work put in to it!
all my love to all, always xxx

Grahame : Huge thanks for all your kind words of support Maggie. Take care xxx
Keep fighting Grahame, if anyone can do the 10 treatments it’s you! I’ll pray that you keep strong and come out the other side fighting as you’ve always done. Love to you and all the family, especially Mary.. Take care, Pam xxx

Grahame : Hopefully Pam, I will give it my best shot. Thanks for the kind words. Keep well and love to the family xxx
You can do this Grahame, you have set the challenge of getting to do all 10 of your treatments, you have so much to live for and have fought a very long battle, you can beat the beast that lives within, well done so far, 1 more and you will be half way there!
You are truly an inspiration to many others , sending you lots of hugs and good wishes.
All or love the Maltby’s. Xxx

Grahame : Huge thanks Elaine. Yep, nearly half way there, tough but hopefully I can manage it. Hope you are keeping well, you have been more than amazing with what you have been through. Love to all the family xxx
Truly an inspiration. Rock on Grahame. You can do this.

Grahame : Many thanks Zelna, take care x
You are inspirational and you have an amazing family that are fighting right along with you
Keep strong and you'll win the battle Love to you all x

Grahame : Huge thanks for the kind words Rina. My family have been amazing and very patient :>) Hope you are well. Take care and love to you and family xxx
Keep it going big chap. πŸ’ͺ🏼πŸ’ͺ🏼πŸ’ͺ🏼πŸ’ͺ🏼

Grahame : Cheers big pal
Gigi...you keep on rockin, wonderful to read your progress, sending you love and hugs and big squishy cuddles.

Grahame : Come over and get some real cuddles xxx