So, today is the first day of the rest of my life. How it has changed in 24 hours and what prognosis of longevity my world has after diagnosis of prostate cancer. Before I start my story I'm a very fit, not seemingly ill, 62 year old with a fabulous wife and a beautiful daughter.
Right here we go (I'll apologise in advance if some of my terminology is incorrect. I'll try and be as accurate as I can and learn as I go along, forgive me, I'm a newbie) spotted blood in urine and went to Docs. Before this I had very few symptoms a slight dribble occasionally, slight Ed and that's it. A couple of months ago I experienced what I could only describe as something like cystitis - an urge to pee and going frequently.
I didn't think a great deal of it, maybe it was prostatitis, until one day I spotted a pink tinge to my wee. Not good I thought, better talk to a professional boy, my feet hardly touched the floor. This scan, that scan MRI, nuclear bone, CT once (pelvis), CT twice (thorax), prostate biopsy (that was a barrel of laughs with a sting in the tail) OK they were thorough for which I thank them here.
Diagnosis on 11/11/2015 was locally advanced prostate cancer, Gleason 9, original PSA 98ng/ml fortunately, from what was scanned, so far, showed no metastases apart from a hot spot on the breastbone which was CT'd today. Knowing my luck it will be a secondary in the bones but we'll see.
My consultant advised that this was an aggressive cancer and they would not operate as it was starting to move outside the prostate. So, hormone therapy would be started immediately and followed up by radiotherapy in a few months. Straight to the point - eh. I was pleased that they didn't suggest any invasive surgery, even though I was in a more advanced stage and treatment would be more difficult. Hormones will do nicely thank you.
Wow, how your world comes tumbling down at diagnosis.
Right, first and foremost I'm setting out to fight this as I did with a rare condition I was diagnosed with in my early 20's. I was diagnosed with a hybrid version of scleraderma / dermatomyositis (autoimmune condition) this I had for nearly 5 years and at diagnosis was given 6 months to live PAH! 2+ years if I'm lucky with my PC no comparison. It took a lot of balls and a massive dose of Prednisolone to do the trick the first time. Now it's those oversized balls causing all the trouble!
Tcch you can never win.
Well I really don't think I'm going to match surviving for another 41 years again (this would put me at 103 and owning a letter from the Queen!), but if I managed to survive first time round, then there's nothing to say I can't squeeze a few years out of this little nuisance. So, rightly or wrongly I'm setting a target of 10+ years and see how we go. That should get me to 72 ish, maybe a tall order, and I may never reach it, but definitely worth setting as a goal.
One thing I have learned throughout my life is the power of the mind. It is an incredible tool used correctly and this is what I shall apply again, along with great medicinal back-up (our wonderful NHS) and a change of diet. Oh yes and no matter what is thrown at me I will do my utmost to laugh and laugh again, totally belittling this internal demon that has yet to show its true colours.
The hospital gave me Bicalutamide (Casodex) 50mg to start on straight away and then I am to go for an injection of Prostap (3 month) next week. Even after 24 hours and the first tablet, I'm checking out handbags and lipstick colours. OK, for those who have battled this for years (you have my utmost respect) and I know you have been frustrated more than once with situations I've yet to experience, I know you'll say this humour is going to be difficult the further I get into this little project, but I'll keep it coming as long as I can it's definitely therapeutic.
Oh, most importantly, during scans, tests and overall diagnosis, this website gave me everything I needed to move forward in my life. I owe it to those who instigated it, run it and to everyone that has contributed here. I will now apply my story for those like me who are lost, or just very interested in different stories, results, miracles etc. This disease can be lonely but not with great websites like this.
The main thing that has struck me so far is how little is talked about and has been made aware of this problem in men. My father was diagnosed with PC at 78 nobody told me my chances of getting it were twofold because of family history! Maybe I would of woken up a little earlier to the potential problem if I'd been advised or was it the info is out there and I was to reticent to look and take heed I'll never know. One thing's for sure, I will pass on everything I get to know and help those who might need any kind of assistance - but be aware at this point I'm a mere amateur!
24 December 2015
Well right up against Christmas and a lot has happened since my first post here. I was requested to go to see the urologist to see what results the follow up scans showed on my chest hotspot. It was a bleak day and as I thought, cancer had hit one spot only on my skeleton the left clavicle! Not only that, the MRI had picked up 'granules' in the lungs and, for want of a better diagnosis, they were deemed to be offshoots of the prostate tumour.
Oh well, 'in for a penny, in for a pound' as they say. The urologist didn't pull any punches and said that I was very ill and all in the room, nurses and all, looked very glum. It did knock me over at the time and the prognosis of continuing mortality wasn't great either, maybe a year, if lucky two!! but more encouragingly, I was told, some individuals could last several years. The wife wasn't with me but I knew I would have to tell her, exactly how I was going to do that was a mountain to climb.
I was advised that I would be now passed over to an Oncologist and that I would be put forward for the Stampede trial (at this point I was wondering why the hell I would be herding cattle, but hey, I've done crazier things). I really hadn't a clue what they were talking about.
We settled down to a bleak forthcoming Christmas hoping that we could bond reasonably well with the oncologist who we eventually saw.
Rightly or wrongly I had immediate respect for my designated oncologist along with his Stampede Trial research nurse who was also present. Amazingly approachable, had a sense of humour but a highly responsible outgoing attitude. We talked and talked asking question after question all of which were answered professionally and considerately. We missed nothing and his prognosis was so much more positive. Oncologist:- "We'll just keep hitting it with one thing or another, we can never cure you but we can for quite a while keep it controlled" boy that was worth a glass of wine that evening and we did.
His take was that they were having considerable success with fit, youngish patients with early chemo and I was a prime candidate for it but, NHS England hadn't signed off the blanket use of this protocol. My oncologist was going to talk to a few people to see what the potential was for this as I was an unfortunate case at the wrong time, as it seems everyone thought this would very definitely be good treatment for my personal condition. He didn't hold out any hope that he would be able to sway minds to let me have early chemo.
I still have the potential for the Stampede trial though and so I'm thinking that's the way to go. It has three arms and all of them seem good.
There's Prostap / Zoladex hormone only, hormone and radio therapy and hormone along with Arbiterone (Zytiga) and enzalutamide (Xtandi) two other hormones.
05 January 2016
I was asked by the oncologist if, as soon as I was made aware that we couldn't perform early chemo, if I would call the research nurses and advise them of my intentions to possibly join the stampede trial. This I duly did and was welcomed with a warm reception and a slightly excited nurse. She advised me that although I couldn't be given early chemo because of general NHS protocol there was a possibility early in the new year (2016) it would become one of the arms of the stampede trial. Therefore it would be worthwhile to wait in the hope that if this happened the computer might draw me out of a hat for trialing it. I sort of got excited too - not sure why!
I had an appointment with the oncologist the Wednesday before Christmas but unfortunately he cancelled because he had ill health. Part of the job I suppose when you're seeing so many sick people!
Anyway, Tuesday after Christmas I had a phone call from the research nurse asking if I could come in the following day to see the oncologist. I didn't hesitate and walked into his office the following day to see he was far from recovery and looked quite poorly. I think he'd specially come in to see some of his patients. He went through the Stampede trial and the possibilities and we both agreed to hold off until the new year to see if the trial took up the early chemo arm. We made an appointment for the 10th February which was the crunch point to join the Stampede trial because of the time I had been on the hormone treatment.
Side effects: Nothing greatly noticeable, few hot flushes come and go, peeing a bit too often every 1 to 2 hours daytime, getting up once in the night around 4:00am, a few twinges but that's it.
I'm exercising every day if I can, trying to achieve 10,000 active steps a day and I have changed my diet immeasurably. I will try and list my diet changes another time the main change is no dairy!
While at the hospital they took blood as the oncologist said he wanted to see what my PSA was doing now that I'd been on the hormone treatment for a few weeks now.
My PSA was 98 at diagnosis and the latest reading was 7.5 6 weeks after starting Prostap (Leuprorelin acetate).
This was a great relief and a good encouragement to try as hard as I could to carry on my exercising and dietary regime. I know my PSA will go up and down, but this is a very encouraging second result let's see where it goes next.
As a family we have had a great Christmas and look forward to many more together. I love my wife and daughter so much, I refuse to leave them alone on this mortal coil.
The day after my first chemo Docetaxel (Taxotereฎ) and I'm feeling very well. The day before I saw my oncologist and we discussed that latest CT scans and findings. We ran through the list and all was as he put it - a bit better. Things had shrunk and become less dense and generally his smile told me all.
PSA was now 4.2 from 7.5 from 98. All-in-all a great result is a short space of time. I signed up all the paper work ready for my first of six chemo sessions starting the next day. I must say that the course of steroids Dexamethasone given before, during and after chemo really made me 'zing'! I'd like to stay on these please no aches or pains anywhere. Even old war wounds were feeling better.
Then next day into the cancer services ward to start to be infused with toxicity! Sue the brilliant nurse took her time searching for exactly the right cannula entrance and after a hot tub of water with my hand in it you know, reminiscent of washing up and your veins standing on end, she found the perfect place. A slight sting as the needle went in but hardly noticeable. An hour later finished a quick flush with saline and I was free to go. Even a cup of tea and a custard cream thrown in!!!
Nothing bad to report at all in fact I just keep feeling better.
I haven't lost the high spirit and I mentally bully my tumour and offshoots to make sure it knows it's not wanted. It cracks me up as well as everyone around me.
The next best result I got was that as I carry onto the next arm of the Stampede Trial it will be the two other hormone arm Arbiraterone and Enzalutamide which I so much wanted from the research I have done. Even the research nurse was pleased that I had been randomised into this treatment believing it was exactly right for me.
One thing is for sure that everyone is different and reacts in all sorts of ways to drugs been given. It may be too early to tell after one treatment, but if you're out there about to go through a similar regime, don't panic! I was shocked how easy chemo was for me. I can't wait to see how we've battered my cancer with it after 6 sessions.
08 03 2016
First three weeks of chemo put behind me and seemingly a forward pattern set. All went well from the outset until I reached, as they prepared me for, the second weekend. Low immunity prevailed. On the Friday afternoon I came home from work feeling a little more tired than usual and hit the sack around 20:00. I didn't wake up for another 15 hours! the rest of the day Saturday my temperature fluctuated constantly between 36.8C and 37.8C. I didn't feel ill just highly fatigued. We called the team and they said carefully monitor and if the temperature seems that it's staying high contact them immediately. Something was trying to get me that was obvious. It's always a difficult decision either staying at home in relative 'bug' seclusion, or, going to a hospital where germs are a focus and more prevalent. I got through Sunday by which time my lower spine was aching badly. Managed to go to work Monday but when I got there a greater percentage of the staff were coughing and spluttering. Needless to say I got everything together and worked from home.
By Tuesday I was 'up and at em' once more very much back to my old self.
So, next time I will be wary, shut myself away around the middle weekend and make sure I don't put myself in a vulnerable position.
Typically when I went to see the oncologist and nurses I was put in my place nicely (and quite rightly) to make sure I understood how important the first signs of sepsis are and how rapidly terminal it can turn! I listened intently and thanked them for their patience with me and concerns.
Side effects really have been considerably small. At around 14 days into the first three weeks I had been trying gently to tug pieces of hair on my head to see if they'd pull out. On the seventh day I got about 10 strands easily and I though aaah here we go. Arrangements were made for my hairdresser neighbour to clip / shave my head so that everything looked tidy. Strangely I think it was just a thinning episode and my bonce has started growing hair again! I will keep you updated on this one.
Next chemo number 2! Already they seem to be zipping along the next one (no.3) will be half way. It does so help to know what to expect this time around almost a veteran after one session. Damn the cannula didn't go into the right place now I have a very black / brown, rather large bruise on the back of my hand. I must admit I wouldn't want the responsibility of installing one. Drip, drip for the next hour and a few laughs with other patients who were all sitting in the circle with a variety of cancer problems and treatments. Oh yes, tea and custard cream biscuits how civilised.
Almost a week now and the pattern is very similar to the first session. Massively horrible taste to no taste in my mouth. I cannot eat anything sharp or crispy as it really makes my mouth sore. Mints - especially tic tacs seem to relieve the problem - but I am eating them by the truck load.
I'm now coming up to the dreaded middle weekend and preparing to wear face filters, sit in lead lined containers and avoid all my beautiful friends who just want to be there for me! It's hard but has to be done.
I still stand by what I said I an earlier section, I am finding this so much easier than expected. I must me a tough ol boot. On the 'safe' weekends I have partied, enjoyed friends company, eaten out in restaurants and managed to live what I can only deem a relatively normal life all things considered. What is to come may be different - but only if I let it!
Oh yes and it's all working so far started with PSA at diagnosis = 98, 7.5, 4.2, now down to 2.2 in just over 3 months!
Today I also have the next 3 months Prostap.
And, during all this it has been announced that researchers have had a major breakthrough with Immunotherapy treatments announcing that within 2 years they see major trials of this. Great news for everyone I hope.
Whoo hoo, It's now April and everything going fine. The third chemo took its toll more so than the first two and I was knocked over for around four days. It might have been the fact that I over indulged on the Chilean red wine the evening after chemo my fault I suppose, quite rightly so no sympathy there then. My mouth got quite bad but I found Difflam good at soothing my sore bleeding gums. All round though not a bad three weeks very tolerable.
Yesterday I had number 4 chemo almost home and dry. This time I didn't over indulge on the red wine and feel a load better today, let's see where this takes me. Great news is that the fall in PSA is significant and it seems to be roughly halving each time - 98, 7.5, 4.2, 2.2, 1.2, now down to 0.8! So, everything still working as it should.
Oncologist and chemo nurses and doctors have been fab. Even when the cannula regularly defies them getting into the vein!
I do feel so humble next to some of the chemo patients who are having to take a truck load of medication up to over 6,7,8 hour periods week after week it seems you have my greatest respect and I wish you my best.
No.5 and No.6 chemo now behind me. The journey hasn't been too bad I wouldn't like to do more chemo but if I have too I would. From No. 5 on tiredness and fatigue has been difficult to contend with, as I have at weekends, just slept and slept. Sleep doesn't really resurrect the energy levels, it just about keeps you going to the next chance to sleep. This has happened for the first two weeks of each chemo session. I only hope energy levels come back now I have finished the chemo regime.
Next within a couple of weeks are two scans CT and bone along with another blood review then onto Abiraterone and Enzalutamide. I can honestly say, although I'm picking out tiredness and fatigue here, generally side effects have been more than easy to cope with and I have managed to do all the things I would like to do and gone to work regularly apart from hospital appointments. The worst side effect has been the absolutely gross mouth taste that comes for approximately the first 10 12 days after the chemo infusion.
I had great fun with the chemo nurse on No.6 session. They normally warm your hands in a bowl of warm water to get the veins raised and to make it easier to get the cannula in! So, I thought I would bring along a friend that was to be released in the bowl of water and sit back to watch the reaction. I purchased a small plastic fish Nemo of course 'Nemo for Chemo'. As I was holding my hands in the water I was asked to turn them over of course I revealed Nemo which seemingly swam off my hand, as It did I was greeted with massive guffaws of laughter from the nurse, who then called over her colleagues who also enjoyed the moment. One day I will grow up I suppose, but hey, I tend to enjoy myself before then!
Oh yes and the great news is that on No.5 chemo was down to PSA 0.6, and No.6 chemo is down to PSA 0.4 much to the delight of me and my oncology team.
Staying positive - let's see where we go next!
Just out of the onco's office and I have to say I'm a very happy man / woman whichever way the hormones are going at this moment. PSA now 0.3, liver / kidney function tip top, white cells and neutrophils all good. I thought I was going to start on the Abiraterone and Enzalutamide today / tomorrow, but I've been told to wait for the CT scan which we weren't able to do before this appointment. We did though get the nuclear bone scan back and the metastases on the clavicle had softened right out on the x-ray. On the original scan it was easy to see as it shone like a beacon. Not now, no matter how the onco tried to make it appear it didn't want too. So, much joy all round.
Climbing out of the psychological muddy mire of chemo treatment I can honestly say feeling somewhat normal again is a treatand-a-half. Although the exclamation from the onco when previewing the bone scans was" well who's this well-nourished individual" - means I need to go on a diet and get some exercise. I blame my rather fattening torso on the steroids.
So, a bit of a holiday to get back up to 100% normality / fitness for about 3 weeks and then off we go again. I have been advised that Arbiraterone will make me tired but we'll see. I have managed to get through chemo I refuse to be floored by a couple of tablets!
All things are good at the mo. A little muscle weakness, I intend to bring up to strength by dancing competitions on the WII with my 8 year old daughter (Oh joy)!
Hairless and with brown finger nails ready to drop off, I move on in life not knowing what's next around the corner. I can say that my first diagnosis where my / our world seemingly came to an end, there's definitely hope that's for sure. I have a little chant that I use to stay positive "I will get fit, getting rid of this cancerous s_ _ t" ..... I'll let you fill in the blank letters! It's how I cope. OK it's sort of a craziness talking to myself and trying to chant away a miserable disease, but it works for me.
Positive, positive, positive and laugh all the way to the pub!
Whooo a rollercoaster ride of health and fitness just seen the onco and came away deliriously happy! Bloods were fine, liver function normal, PSA is <0.01 (apparently undetectable). So, I am determined that this ruddy PSA will not rise again (of course I'm sure it will) but I'll try my damndest to keep it low for as long as I can.
The bone metastases on my clavicle is now a mere smudge as the onco put it. He has also written to me separately to advise that the apparent grit in my chest has now all but disappeared ie the lung cancer is undetectable.
Side effects are few severe hot flushes, accompanied with heavy sweating. I am still putting on weight but I will try to amend that not sure if I can but again will try hard to. That's it, I was worried about taking these pills (abiraterone / Enzalutamide) together and I have to say after a few weeks I really do not know I'm taking them.
Positive thinking and a peculiar diet is helping I'm sure. I will try and laugh even more it's great medicine. So, until next time I write here I'm off on holiday and can't wait to have a laugh and great fun.
Lots more has happened which I will keep my log here updated with.
Well a couple of weeks down the line my bloods were checked to see that they were responding well to the drugs I was taking and shock horror they weren't! The old liver said steady on 'ol chap, I can only process so much. The finger pointed heavily at Arbiraterone and I decided it was time to come clean about the party binge just before giving sample bloods. I was told to keep off the Arb and stop drinking for a week to see how well my liver recovered. I did rule out the red wine eventually 'phew' and we tried Arb again. Same thing happened only this time I hadn't had a drinking binge beforehand. Three times we tried to restart with no luck so Arbiraterone is now not on the menu.
I have settled on Prostap, and enzalutamide and we'll see where we go from there. It does seem that the chemo was successful at squashing my cancer and I am still seeing 0.01 PSA undetectable. Great news. I've a few niggly aches and hot flushes but that seems all for the moment. Christmas looms and when I was first diagnosed I never expected to see another. That is not going to be the case bring on the Christmases.
I'm still working full time, getting a little tired, but still keeping up with my 8 year old. I have asked Santa for a load more years before being dispatched. It's the first thing I shall look for in the big red sock.
I have said to the wife that when I was first diagnosed and the realisation and depression set in, every day I awoke I just thought about when my life will end. I now wake up thinking blimey I'm still alive what can I do today, tomorrow and the next day. For those of you newly diagnosed, have courage and faith there is so much to help you. Have faith, keep thinking positively!
Three months have passed without seeing or talking to anyone medical. Today is the big day when I was required to go and see the onco team. All very pleased with my progression thank goodness. PSA still 'undetectable' which was great news. I thought it might have been different as PSA is an inflammatory marker and a week and half ago I fell up a pavement, fell flat on my chest and bruised my ribs lots of inflammation. Believe me this is not one of my normal tricks and fortunately, like a hero, I saved the bottle of red wine that was in my hand at the time!!!! I felt that the fall and bruising might increase the PSA but it hasn't seemed too.
My present physical state is slightly weak muscle structure, a few joint aches and pains could be just normal wear and tear, although I think without the support of a good muscle structure bones and joints are going to take a bigger hammering.
All in all I'm now 1 year 3 months into my PC journey and feeling great. Even started going three times+ to a local gym and doing sensible exercise regimes.
So, not knowing where I go next (apart from 3 months to the next onco visit) what I can say is, if you'd asked me where I would be in 15 months time, at time and type of diagnosis, I wouldn't be telling the same story. I am very lucky and I hope my fortunes stay as positive as they are now.
Well here's a giggle. Having said that I had fallen over the kerb on a pavement and seemingly bruised myself a little, I was in the last oncologist appointment and he asked if I had anything to report other than good health. I told him about the trip over the pavement which had not been troublesome at all. I did then point out that my neck wouldn't articulate from left to right very far without pain. He put it down to probable 'life' wear and tear but to be on the safe side he would send me for a nuclear bone scan.
So, the day of the scan arrived and I duly attended. While under the scanner that was traversing my body from head to foot, the operator asked if she could perform a static scan on my chest. Of course I said yes. During the scanning she was talking to me and asked if I have had any trauma to my chest? I told her about the fall and bruising the ribs. She then told me I had three, very clearly broken ribs! Believe me I was supposed to feel them, and apart from the initial fall and 24 hours after, hadn't felt a thing. This was around three weeks later. They do seem to have knitted together now so I do still have a 'repairability' factor left.
We have just returned from Universal and Disney in Florida. What a ball. Best holiday of our lives. Went with some friends and their grown up kids I just can't tell you how much fun it was. I managed to keep up with the most athletic individuals from the party and clearing over 20,000 steps a day, albeit my tendons in the left foot crucified me by 2:00pm in the afternoon by which time others were flagging too.
I do feel good after such a release and forgetting all about PC for 2.5 weeks. Even shook hands with Mickey and swam with a Dolphin called Yoko.
Now, even better, I have just been to the oncologist today who reports that my PSA is still totally undetectable and all things are good. It seems that each time I see the oncologist that I get another three months to live. Of course it's not that way at all just seems it.
Keep fighting my friends, be as strong as you can. I continue to laugh in the face of PC and it seems to work for me. I fully understand that some of you aren't so fortunate and I would like dearly to pass my strength to you.
Talk soon 3 months approximately.
Blimey so sorry I have been slacking. So many things to do and see. I have a bucket list as long as your arm some fabulous friends a loving wife and daughter and now a raggedy little dog (puppy) called Milo. Great fun all round although Milo is refusing to let us sleep just now. The latest Onco review was a 'gas' he started by saying (as I entered his office) "no need to sit down, we only see ill people here" as he clutched my latest blood results.
Great news PSA is still none existent I have though struggled with certain tendons and muscles which have become weak and painful. Onco said "why not take a holiday from the drugs". That gave me the jitters so I said maybe next time as I have just, along with my GP, started to reduce Amlodipine for blood pressure and my pain was very gradually subsiding. (I can now say after being off Amlodipine for several weeks my pain has almost gone) obviously what I was suffering was nothing to do with the PC drugs.
We spent a week in North Wales with friends swimming, cycling, tennis, snooker........I did well to almost keep up. The 10 mile bike ride did take its toll somewhat but after a few hours I recovered enough to party once more.
So, still here, feeling the best I've been since diagnosis, eating drinking weird and wonderful things! I'm loving life and no crappy PC problem is going to take that away if I have anything to do with it.
Must lose some weight though, getting too portly to say the least. I wish all you chums out there the best stay well and fight your way through this as much as you can. Another update in 3 months.
01 11 2017
Where has the last three months gone? Not sure, but I'm still here thinking about it. Once more I worry about my PSA levels before going into the Onc's office, once more I go away with the same sweet news '0' PSA UNDETECTABLE!
Met a very nice lady Dr who's joined the usual Oncology team and we're all well pleased that I'm still upright, walking about and generally, all things considered, fit and healthy. Definitely I have a few niggling aches and pains but nothing I can't bear or that is interrupting my lifestyle.
Side effects. Slightly more noticeable man boobs, a little more tired sometimes usually after exercise or a bout of consuming alcohol, aches from resting to standing they go away after I have moved a few steps.
Two years ago I was diagnosed with PCA, so I'm damn lucky I have got this far in such a fit state my third Christmas coming up since the initial terminal diagnosis and I didn't expect to last beyond one!!!! What a great Christmas present to be here enjoying every minute of it with my family.
Apparently, according to my research nurse - I'm a star patient! I can only believe that my positivity is helping enormously. I know it won't always be this way, but while it is I will damn well make a stand against the blighter within.
I am starting to think that my weird diet is also helping so for my next status review I will list those things that I consume I think may be helping, who knows.
For now I remain very thankful and a happy chappie. All be strong.
Oh yes, if possible please have a Merry Christmas!
Colin's e-mail address is: carnaroman AT gmail.com (replace "AT" with "@")