I'd had back pain for several months but put it down to an old sporting injury. When I was diagnosed in January 2011 I was shocked. The consultant urologist told me to expect 18 - 24 months of life. The cancer was aggressive (gleason 4+5) and there were bone mets 'throughout the axial skeleton, perineural invasion and it was present in the lymph nodes'.
By March 2011 I was started on total androgen blockade. That's zoladex and casodex. The PSA started falling and continued down to 7.0 by the following August. During that time I put on massive amounts of weight. Went from 11st 12lbs [166lbs/75.5 kg] to 13st 10lbs [192lbs/87.25kg]. I'm 6' tall and had always been reasonably slim and active. Waist size went from 31-inches to 36-inches. That took some getting used to as did the abscence of any sex life!! My passion is horse riding and I keep a middleweight hunter - who, next to my wife, is the love of my life - I used to ride him 5 or 6 times each week - now I can hardly look after him and that hurts.
GP put me on maximum dose of diclofenac helped with the pain. By September the PSA; was rising - doubling time of 4 weeks. The urologist decided to withdraw the Casodex. Apparently in rare instances this can cause the cancer to restart responding to the Zoladex.
The pain was also getting worse so I had radiation therapy on my spine (T6 was in danger of collapse) and my right hip. The pain got a lot worse within a few days and I needed crutches to get about. After a month or so the pain started to ease.
I decided to try for trial and after two trips to the Royal Marsden (and having had a PSA of 45 four weeks earlier) they told me my PSA was down to 9.5. It seemed that stopping the Casodex had worked. So no trial for me.
I went for my usual appointment with the oncologist ( by this stage the urologist had passed me on), in February, and he wanted to put me on Chemo. I told him that my PSA was down - he hadn't had the report from the Royal Marden - but he said that because of the state of my bones he wanted to go ahead with the chemo. I convinced him to do another PSA test. He did and it came back at 7.00. I then argued to defer the chemo and he, reluctantly, agreed.
The PSA has continued to fall and it is now (September 2012 at 0.09). During the treatments I started to get breathless - I have always had slight asthma but it has never interfered wth my everyday life. My GP checked me out and found I had high blood pressure and high cholesterol and I was getting attacks of sharp pain in the side of the neck. Never had these problems before. GP just gave me a stronger inhaler. In April of this year I had a heart attack. Block right coronary artery. They put a stent in but the heart has been damaged.
The diclofenac I was on was contraindicated for heart disease ( in a discussion with my GP at a later date he told me that there had been a warning from the department of health and he had withdrawn it from nearly all of his patients - he kept me on it because it appeared to be dealing with my pain) and of course the hormones can also cause heart disease. Just surprised the doctors didn't take the warning signs more seriously and maybe I wouldn't have a damaged heart. Anyway there's a warning there for all of us. Doctors tend to see you as a cancer patient with limited shelf life and rarely look beyond the prostate cancer.
As the PSA is down the doctors say the pain should be lessening but that's not happening. I am on strong pain meds and am restricted in what I can do. Of course there are occasions when I overdo it and suffer for that. My wife then has a go at me as she hates to see me in pain. The oncologist has referred me to a spinal surgeon and I am waiting for the appointment. Presumably they will do some scans.
The good news is that I have passed the 18 month prognosis and fully intend to pass the 24 months. Nobody knows when they are going to die so I am planning for the future!!
Hi just realised that I forgot to include side effects - well here goes:
Hot flashes - uncomfortable but liveable
Enlarged breasts - embarrassing
Weight gain - distressing and still fighting
Tiredness and fatigue - used to do so much but now I tire easily
Lack of concentration - largely down to the pain killers - 60mg codeine up to 4 times per day
Bone and muscle pain - once it strikes, usually because of exercise, it gets worse very quickly
Depression - think this is mainly due to the frustration caused by all of the above but don't let it get to me often
Supportive and loving wife - realised just how strong my 'other half' is - couldn't manage without her love, dedication, support and sense of humour!!
Hi, I had an appointment with the spinal surgeons who told me that I have a problem with my right pelvis. One of the areas I had palliative radiotherapy last December. The radiotherapy was supposed to have 'knocked back' the cancer which is replaced by new bone growth. Not as good as the original bone but good enough to sustain me.
It looks like all has not gone to plan as the right side of the pelvis is 'honeycombed and cracking'. They have explained that any sudden shock could cause the hip bone to break through the pelvis which would not be good news. Horse riding is out at the moment.
Explains the pain. I have had a CT, MRI and bone scan. After reviewing they now want a bone density scan. The surgeon wants to put a cage around the pelvis to support the hip but this will involve replacing the 'good' hip as well. The point of the scans is to assess if there is good bone to attach the cage. They are also considering some work on the lower spine but regard the pelvis problem as the primary area of concern.
I have bad pain in the lower back and the left hip and presumably the scans will show what is happening there. Just goes to show that low PSA does not assure lack of disease progression. Think my pain emanates from the fact that PSA was so high at diagnosis and the side effects of the hormone treatment.
Hope to have discussion with my GP next week and meeting with the surgeon in the next couple of weeks. Will update further meanwhile keep taking the pills and staying positive.
Hi it's January 2013 and two years since my diagnosis. Doctors said I would last 18 months to 2 years max!! Saw the spine surgeons and one said she did not want to operate on the spine as she couldn't guarantee any reduction in pain and could destabilize the spine. She did say to come back when I get tingling in the hands or feet or incontinence as that means I would have a collapsed vertabrae. Great - no suggestions of ways to avoid it.
The hip surgeon says he could operate but again it might not improve the situation and recovery time would be 18 months to two years. Good news is he thinks other surgeon is a bit hysterical. Says it is unlikely that the hip will collapse and that gentle horse riding is O.K.
Problem is that pain in upper spine is very bad at the moment. My G.P. has prescribed low dose (10mg) amitriptyline. This drug is an anti-depressant when given at 150mg but at a low dose is excellent for dealing with nerve pain which is what I have in the upper back. The nerves are being constricted by stenosis and the pain is in the back, shoulder, wrist and hand. Together with the lower back pain and hip it gets a bit much at times!! Had a spell of about two weeks of constant pain, including waking at night - got a bit down at times but Kathryn just supported and got me through it - that's why I went to my GP for the extra pain killers.
The amitryptyline seems to be working - early days yet only 10 days in - and the pain is more manageable. Getting up to see to my horse. With all the bad weather he's been stabled 24/7 for the last 10 days. I'm managing to feed him and muck out his stable and might even try a little hack when the weather clears.
Still get very tired but just try to carry on and do as much as possible. The scans show that the mets have worsened in some places and improved in others with a couple of new ones. The bone density scan is good. They couldn't do an MRI of the upper chest because of the stent that was fitted when I had my heart attack last April.
The PSA is rising ever so slightly. August 16th - 0.09: October 3rd - 0.10: November 14th - 0.11. Seeing the oncologist 21st February and will have PSA test one week before. I see that America and Europe have approved aribaretarone for use prior to chemo and wonder when/if it will be likewise approved in England.
Well - had a good Christmas and looking forward to the next one!! Every day is precious and every pain free day is to be treasured.
Had latest PSA; result on 14th February - Valentines day - down to 0.07! Lowest ever. Saw the spine surgeon again and they are doing an MRI of upper spine. Saw oncologist and he said the spine problems are due to the advanced state of the pc at diagnosis. Suggested I saw him in 4 months time. I suggested PSA; test in three months and if no problems then I see him in 6 months. He said o.k. not worth seeing him unless PSA; was up to the 4-5 range. Suprised at that statement - will ask for an appointment if it is >1.0.
For now continuing with the pain meds. Not very hopeful that the spine surgeons will be able to do much. They, and my GP, say surgical intervention in cases like mine is rarely successful.
On the plus side managing to sleep o.k. and enjoy the odd glass of red wine. The snows have passed and we have had two weeks of almost no rain. Horse is getting out into the paddock during the daytime and Summer is just around the corner!!!!
Praise the Lord for his Bounty!!
Hi Guys - had latest PSA on 7th May and it was up slightly to 0.09 (from 0.07) but nothing to worry about. More importantly have started to feel much better - more energy and less pain.
Spinal surgeon did MRI of upper spine and reports that mets are reduced and no need for any concerns. This ties in with how I feel about my general state of health.
I have smoked cigarettes since my early teens and despite the cancer and a heart attack decided to continue on the basis I might as well enjoy it in what time I have left. I feel so good now that I have stopped smoking ( went cold turkey two weeks ago) and joined a gym!!.
Everything is hard going at the moment - trying to build up strength and avoid weight gain - a little swimming is helping.
I am aiming at at least another three years and with the Lord's help this will happen - let's see how it goes!!!
Hi Guys, not much happening over last 5 months. Had PSA; result of 0.10 - 29th July (from 0.09 7th May). Saw new Oncologist, at local hospital, very convenient, and agreed PSA; in three months and see her (the oncologist) in 6 months time if PSA; was o.k.
Had PSA; 18th October up to 0.15 (from 0.10) These results are all very low but, after seeing a nadir of 0.07, small rises to 0.15 worry me. Put it this way the last result was a 50% rise.
Still off the cigarettes and working at the gym but starting to show symptoms of depression. Discussed this with my G.P. who feels it is probably a side effect of the hormone treatment. Declined his offer of 'tablets' (trying to cut down the number of chemicals going in to my body) and said I would try other things. Prayer is my 'treatment' of choice.
We now have a puppy - Dexter - a companion for our 8 year old 'Ella' - we are now a two dog familly. A puppy really takes your mind off other problems.
Enjoy Christmas and let's all look forward to 2014!!!
Had PSA; on 24th January 2014 - came out at 0.26. Again low but another increase. Looking back to February 2013 nadir 0.07, then 0.09, 0.10 and 0.15 were the three monthly figures leading up to January of this year.
Saw Oncologist suggesting Chemo when it hits 1.00. We'll see I think. Planning a break with my daughter and her family in August so will put off any Chemo until after that unless things are very bleak.
Dexter, our new puppy, is now six months old and has just lost his 'bits' but he's still looking gorgeous and making good progress. The constant rain we've had here in Somerset has made it hard caring for the horse 'Shankly' who is now in a new stable.
Kathy, wife, starting new job in a couple of weeks, so everything is go and looking good. Not too worried by the rising PSA. I've already had three years since diagnosis and original prognosis was 18 - 24 months so I have nothing to complain about.
Thanks to my heavenly Father for all the good days past and yet to come and thanks to my wife Kathy for her love and understanding.
I didn't realize it had been so long since I had updated. PSA continued to double every three months and a few weeks ago the oncologist (new one as friendly Dr Plataniotis has moved on) suggested Chemo. I suggested that Chemo wasn't appropriate and asked for Abiraterone - she said getting Abiraterone could only be done through the Cancer Fund (not approved by NICE in the chemo naive setting - which means you have to be near death before you get it) she also pointed out that if I got abiraterone then I could not get enzalutamide later.
My attitude was thatI was more concerned about now than later. To cut to the chase - after some scans and a couple of changes of heart by the oncologist - I started Abiaterone with Predisolone, three days ago.
I will have blood tests every two weeks to check liver function etc. I suspect it will be a month or so before I know if I am responding to the drugs. Some respond well and some do not respond at all. I pray to my heavenly Father that I will be one of those who respond (I almost said that I pray that I will be one of the lucky ones but I know already that I am lucky. I have had a brilliant life, done some awesome things, met some astonishing people and have learned to appreciate the beauty of this world and the people in it!!)
I read lots of stories where people adjust their diet. Also stories where things like coffee and tomatoes can help. And stories which say that coffee is awful for Cancer. I think it is important for an individual to follow what they belive to be best for them. It is an optimistic outlook which seems to improve the prognosis. Foer me , I am a Christian but also a bit of an Helenist. And I say 'all things in moderation'. I drink my red wine, drink my coffee - excellent espresso from my new machine and latte and cappuchino for my wife who likes milk - eat a nice steak from time to time and also eat lots of fruit, veg and fish. In short - I eat and drink whatever I fancy but always in moderation. I trust my body to tell me what to eat. So far I have outlived the original prognosis. And I will or will not survive for a few more years - but I am not going to starve or go without those things I love. Even the condemned man gets a hearty meal before his execution!!
Will update when I know how the new drugs are working.
May your God be with you.
started on Abiraterone (Zytiga), in pre-chemo setting, September 2014, when PSA; was 1.1. Over the past year have had small falls and rises and it is currently 0.96. All other bloods are good.
I still get very tired and suffer nausea and bone pain some days but symtoms are manageable. Can't believe that I am coming up to my 5 year survival - December 2015 - as my initial prognosis was very poor.
I am getting more hopeful and looking forward to a holiday in Jamaica next October to celebrate our 20th wedding anniversary. Please God I'll still be here and able to go.
Got to have something to look forward to. Hope my story is helpful to all those who have a poor initial prognosis - remember that I was 880 PSA;, Gleason 9 (4+5) and extensive mets throughout the axial skeleton in December 2014. I have a met in the lung which doubled in size but has reduced slightly since I have been on Abiraterone.
Seeing the oncologist every three months - she would like to make it every month - but we have an understanding that if there are any serious symtoms I will contact her.
Will keep you all posted.
Saw the oncologist on Monday and PSA is at 0.98. Still below 1.00 and hardly moved in the last three months (it was at 0.96) the Abiraterone seems to be working its magic - though not without side side effects. The worst are nausea, bone pain and fatigue. To call it fatigue is an understatement. Sometimes I just lie there and even talking is an effort. On the bright side I have days when I feel really good so it's all worth it. By the way does anybody have a problem with sensitive teeth? it's not a side effect I've heard off but I've developed it and don't know if it is related to the Pca or advancing age. Would appreciate feedback.
Kathryn went off to Madrid for a few days, a couple of months ago - to celebrate a friend's birthday - whilst she was away I had a good day and decided to investigate a leaking gutter at the horse's stable. To cut short, lost grip in hand and leg, fell of ladder and split my knee. Very interesting to see the knee joint. Kept in hospital overnight as they had to operate to clean out the joint. Not much pain, benefit of the constant pain killers I take. A couple of weeks later fell over when left leg didn't work and sprained right wrist - then a week or so later fell down the stairs. Now that may seem all negative but the positive side is that despite these falls none of the mets in my spine, pelvis rib etc cracked. Again the abiraterone is doing it's job. I know why I kept falling - not enough red wine - so putting that right!
I'm finally celebrating five years of survival - which is quite good since I have aggressive Pca and was stage IV at diagnosis. Apparently only 30% of us in that stage at diagnosis last 5 years.
Next October Kathy and I will celebrate our 20th anniversary. We went to Couples Tower Isle in Jamaica, for our honeymoon and went back there for our 10th anniversary so, with the good news this week, we will be booking for two weeks next October to go back for our 20th. Do you think we are tempting fate?
Travel insurance is a problem - I just get something which doesn't cover existing conditions - heart and Pca - on the basis that my Pca is hardly likely to become life threatening in just two weeks. Positive mental attitude, though hard to maitain at times, is all important.
Looking forward to Christmas. My daughter, her husband and the two grandchildren are coming to stay for New year - they will spend Christmas with her husband's parents - so that's all good.
Here's wishing everybody a pain free happy Christmas as we cebrate our Saviour's birth.
Love and prayers to you all.
Continuing on Abiraterone since last update. PSA went from 0.98 in Dec '15 to 1.56 in March 2016. A rise of 60%. I was worried by the sudden increase however the latest PSA in May 2016 was 1.78 a more respectable increase of 14%. A long way from the days of 0.07. Feel that the falls I had may have caused some of the increase.
Pain levels continue at a fairly high level. Over the last month a lot of pain in upper back - sharp burning sensation, and nerve pain in left hip and down leg. The nerve pain has been very debilitating and I have spent a lot of time inactive. Seeing GP later this week for some meds for the nerve pain.
Hope to get the pain under control as still looking forward to 20th. wedding anniversary in Jamaica at end of September.
Sorry if this post seems a bit down but that's not how I feel. My revised diagnosis was stage 4 with extensive bone mets. Stats say only 30% make 5 years. I did that in January. Stats also say if you are in the 30% you have a 50% chance of making 5 years. That's where I'm heading. Just need to get the pain under control.
I would expect chemo or Xtandi next year if PSA continues to rise but will meet that challenge if and when it comes. Anyway wife (Kathy) says she will kill me if I die.
I always say I've had a good life. A friend of mine had a 16 year old daughter. A beautiful young lady with a gorgeous personality. Full of life with lots of friends. She was diagnosed with Non-Hodgkins disease. It has a 98% cure rate. Unfortunately she was one of the 2% and died earlier this year aged 17. A wonderful life cruelly cut short.
I never ask 'why me?' when I think of my Pca but I do ask why Jess (that is her name). Please guys offer up a prayer for her and her family.
Meanwhile Peace, Love and and Prayers to you all.
Melvyn's e-mail address is: firstname.lastname@example.org