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How long will I live ~ My PC Story ~ 2009 - 2017

User
Posted 01 Mar 2017 at 11:00

 How long will I live after finding out I have PC ?

Over 7 years so far http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif , but after many pain free, and problem free years, now consider I am a ticking time bomb as things are escalating, and now on palliative care, Radium-223 the most expensive pain killer in the world, circa £50,000 for 6 injections, although the NHS are believed to get a 55% discount.

My name is Les from South Yorkshire, 61, first diagnosed in December 2009, and classed as aggressive, Gleason score 9, PSA 14, but no sign of spread.

Thank you for looking at my story, I have posted this as it may help folk get a general idea of what happens after diagnosis, although I do appreciate every case and outcome is different due to stage at diagnosis, and maybe more importantly, being placed in the care of a good Oncologist.

My Prostate story 2009 - 2017 and continuing -

 Commenced December 3rd 2009

 

Following a routine health check while living in Spain

Had no obvious symptoms, but Diagnosed with 14 PSA

 

2010 Feb / March , returned to England and saw a DR [name removed by Moderator] (lovely man) in Weston Park Sheffield

 

Scans + Biopsy = PC Confirmed and Diagnosed as the aggressive type

 

Gleason score 4 + 5 - put on 1 months Casodex

3 x 1 month Prostap injections

2010 June - August ~ 37 days radiation

 

PSA Lowered to app 2

 

Transferred to DR [name removed by Moderator] for follow up care.

 

2011 ok

2012 ok

2013 ok

 

2014 March time ~ Back pains started - had scans - found metasised on left upper rib bone, and an enlarged lymph node in pelvis 14mm

 

Oncologist tattooed my back for immediate radiation, then changed mind at last moment, saying he would save radiotherapy for the future, and put me on Prostap for life.

 

Back pain lessened greatly, but never disappeared

 

2014 Further scans showed more metastasis to right rib ~ PSA remained low

 

2015 PSA had risen to 14

 

I had now been with the same oncologist around 4 years

The Oncologist explained the Stampede trial to me, I was not officially on it, but could be treated with the same regimen, which could offer 4 years more survival over the standard anti androgen arm of care alone, Prostap.

 

I thought this was my best option, and was transferred to a Professor at Weston Park Sheffield

 

August 2015 ~

Oncologist briefly explained what Docataxel was, gave me a four sided printout to read and 10 minutes to decide if I wanted it.

Felt badly considered at the time, but signed under pressure and stress, as it seemed my only hope.

 

Put on 1 months Casodex, then steroids Prednisilone and Prostap monthly injection.

Started 6 x Docataxel, 3 weekly, didn't cope too well, many side effects, including many nerve related problems, anxiety, edema, and pneumonia which was treated by my local GP

(Insert update)

If I would have been told of both the immediate, and long lasting side effects of chemo, I would have refused it.

6 months of hell.

Also found out, most informed oncologists now use Enzaluteamide as a first line treatment, not Chemo.

 

During chemo treatment pre appointments, I saw 5 different consultants, and on one occasion a nurse, as no Oncologists were available

I was never given a key worker, that situation remains the same.

 

By December 2015 at the end of Chemo, my PSA lowered to 1.0 , the back pain had gone.

 

Now transferred to a new Oncologist.

 

Starting early 2016, within weeks of Chemo ending, the back aches returned, and my PSA doubled on 3 consecutive tests, all well below 3 months apart. I was offered no additional treatment.

 

This concerned me as I consider PSA doubling a very important factor, the Oncologist said yes it keeps doubling, but the number is too low to worry at this stage. I disagreed.

 

My own view was although PSA went 0.4 - 0.8 - 1.0 - 2.0 - 4.0 it was still a doubling, and that if bone lesions or tumours were developing, these too would be doubling in size, this has proved to be correct, as many areas of rib, and vertebrae are now metasised with lesions, the rib ones being as long as 110mm

November 7th 2016

At my scheduled meeting, and after almost a year of back pains, I said -

 

''The chemo has obviously not worked for me then ?''

The Oncologist said ''Yes it did, it was the previous hormone treatment you had been on that had failed'' That is why we put you on chemo.

 

I replied, I was not on any hormone treatment for 4 years, your predecessor put me on that, and Prostap, at the same time as the Chemo started, last August 2015

I am pretty sure if this guy would have been my regular onco, he would have not used chemo.

 

I felt at a loss that my history was not known in the hospital. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

 

So he said go straight in for a blood test before you leave the hospital, and I will order a CT Scan for you, then see me in late January

He also put me on Bicalutamide in addition to the usual monthly Prostap injection, for total androgen blockade, 7th November

 

End of November ~

My back ache has not lessened after 3 weeks on Biculatamide

It is not at a strong pain killer stage, but is in exactly the same rib areas as previously.

 

I started working things out and thought, why would I have a pre scan blood test, yet 3 weeks later have no CT appointment ?

 

So upon ringing the Oncologists secretary, 1st December 2016, and explaining my situation, she kindly returned my call and told me to stop taking Bicalutamide, and they would be in touch and put me on steroids.

 

I pondered this advice for several hours -

 

So rang back and asked for more info, explaining the Bicalutamide is causing no big problems and should be benefiting me, and why did he ask me to have immediate pre CT scan blood test, then no scan appointment comes through.

 

1st December   Secretary has emailed Onco and I await a reply

 

2nd December 2016

 

Oncologist rang me and said he had sent prescription to my GP for steroids, and to keep taking the Bicalutamide.

2mg one a day Dexamethasone for one week

Then 0.5gm ~ two per day for 7 days

Then 0.5gm one a day for 28 days

 

Booking me in for MRI scan within 2 weeks

Booking me an appointment re Radium 223

CT scan in January 2017

 

Next appointment with Onco mid January 2017

 

Took first steroid tablet 2MG Sat 3rd December 2016

Now lost ability to sleep with all the steroids

 

Went to bed at 2 am, was up at 3 am for 45mins

Awake most of nights

4th Dec 2016 Took 2nd steroid tab

5th took 3rd tab, aching a little at both sides this morning

went to bed at 2.30 am

6th took 4th tab 9.30 went to bed at 4 am

Received copy of oncos report to my GP today, oh dear, the facts refer to another patient ! so not exactly factual, referring to my bad lower back pain and inabilities, which I have none of !!

7th took 5th tab 10.30 , leading to another sleepless night

 

With the rib pain worsening, and no action, and asking for some answers, we now have some results.

 

My Oncologist rang me this morning, a long detailed discussion, and now putting me in for an MRI scan within 2 weeks to deep check me, he says MRI is better than CT scan for checking spine, so why not do it in the first place I wonder ?

 

Making me an appointment with oncos who do Radium 223 treatment, discussion and options, I don't want it too soon though, as it will only work for so long ?, so will decide after the scans

Radium 223 has very little side effects as it targets the c cells in the bones only.

The man who does the Radium is the Onco who was my first Dr. in 2010

 

Mid December 2016

 

The pains worsen and seem to be spreading across the back

Made several attempts to contact the onco, no return response.

 

Early Jan 2017

 

Pains now getting intolerable, again made attempts to contact onco, No response to me.

 

W/E 14th Jan 2017

 

Back pain worsens by the day and is now in center of back, went for regular PSA test at Weston park, asked for pain relief while there, not possible, gave me a phone number to ring, got home, rang, and it was Weston park where I had just been, some 15 miles away !, Duty nurse told me to take Ibuprofen, bad advice ! that is a no no with my current meds. So told me to go to A and E., sorry, this is England, I do not have 12 hours to spare waiting to see a Dr. who is not qualified in PC.

 

While in the hospital, I grumbled to a staff nurse about the lack of response from my ''care team'' of whom I know nothing, never ever given a key worker.

 

Next morning onco rang me, can you come straight in. Wow !

So Wed 11th, went to see him.

 

He confirms that MRI shows PC in spine thoracic area, he says its not dangerous, not near spinal cord.

I would have expected to be informed immediately when the scan results were found, hello - its in the spine !

He looked to see why the other onco he wrote to on 2nd Dec has not responded to his request to see me re radium 223.

 

He offered me to choose between Radium or Radiation, a bit difficult and hard for me, a vehicle mechanic by trade, to decide on the best cancer treatment.

Need results of PSA and CT scan before deciding.

He prescribed Morphine, which after 2 days, appears not to relieve my pain, no more than Paracetamol.

Upon self checking, it seems they prescribed me the dosage level for a 6 to 12 year old ! 2.5 to 5ml , the inner drug info instructions tell me it is double that for an adult.

 

Friday 13th Jan, Yes, Friday 13th ! rec letter to see Radium onco 24th Jan

 

Monday 16th app with regular onco, who should have CT scan and PSA results, then a decision can be made.

 

At the meeting he informs me my PSA is now 8.5 and the CT scan shows several new areas of metastasis to ribs and spine, but no visceral signs (not got to any organs)

 

The hospital give out a leaflet re bone pain and spine metastasis, they say it is important to get treatment in 3 days, they kept quiet about the results, then give me an appointment 3 weeks ahead !

  Of late, with all this worry, our quality of life has gone downhill rapidly, me with the pain and worry of the outcome, and my lovely wife, who is as effected as much, maybe even more than me, emotionally.

 7th Feb 2017

Now been 2 weeks since I saw Radium Onco, still no appointment for Radium, rang last week and was told it would be with me by now.

Rang onco secretary 9.50am

 

8th Feb, call still not returned, rang them and was told request has been sent re radium treatment, and was ASAP, and it is done on Tuesdays.

So as I would expect a weeks notice, can only presume I am at least two weeks away from treatment.

Secretary said she told doctor my pain was now quite bad, and I am anxious and sleepless, she said he did not appear too concerned and it was what would be expected in my case.

 

8th Feb

I must have got the ball rolling, A call to me from nuclear science at Sheffield Hallamshire, very helpful

 Booked me for Radium on 21st Feb 2017

Told me to get bloods tested Friday before, and would book me an appointment with Oncologist for the morning of the same day

 

15th Feb 2017

 

Just got written confirmation of 6 appointments for Radium 223 starting 21st Feb

 

Bone pain now driving me mad, Pregablin, Paracetamol, Ibuprofen, Co Codamol, standard Morphine dose, ALL no good,

 

So just bought a TENS machine from Lloyds chemist, read all the good reviews on Amazon ect. and chose the £11.99 double pad version.

 

The leaflet with it, and a lot of sites, say consult before using if you are a cancer patient, well, after 7 years of consulting, several hospital mistakes in my treatment, and so on, I now consult Doctor Google and work on a common denominator basis !

 

After all, it was Dr Google who said if my PSA kept doubling in short periods of time, that the cancer may well also be doing the same. Sorry Mr Onco, but Dr. Google was right.

 

Dr Google said what have you got to loose ? Some say TENS machines can kill cancer cells, but I doubt that !

Some say it can make them more active, maybe true, So here we go, batteries in and stick it over the worst two ribs.

 

Best take it steady away with the first use -

 30 Minute session on a pretty low setting (3) no noticeable difference

Lets turn it up a bit

30 Minutes on setting 8, no noticeable difference

Lets turn it up a bit more

30 minutes on setting 10, now I can feel it pulsing and Yes, I would say a 50% reduction in pain, at last !

 

Took 2 Co Codamol tablets straight after the self induced electrocution, and now writing this some 4 hours later and virtually pain free. First time in weeks.

 

Now I do not know if I have agitated the cancer cells, not even the experts can answer that, but hey, I am almost painless, and at my stage of this nasty disease, just like Tesco bread, don't have too long before my expiry date anyhow, so what's a few agitated cells among friends.

Sadly, on trying it a 2nd and a 3rd time, the effect seems to have lessened quite a lot.

 

Will update this profile as the Radium 223 treatment starts

 

21st Feb ~ Radium starts today

 

Having level 10 pain now, mainly in the left and right ribs where it all started. Cant even move left arm backwards.

None of the painkillers will touch it, the onco gave me a strong painkiller, Pregablin, that also does not touch the pain.

I am taking the morphine tablets as they seem the best although underpowered.

 

First Radium injection, painless, if not a bit scary when the nuclear medicine staff walk in fully protected, like a practice for chemical warfare, or an Ebola outbreak.

 

22nd Feb

No side effects or pain relief yet, but the Morphine is causing constipation, and I have noticed peripheral edima starting, swelling of the lower legs, a side effect of the Radium.

 

Same for the next 5 days, then, if like magic, the pain in my left side and spine has suddenly dropped to level 1, arm movement regained, the right side pain continues at level 10, can only sleep for a max of 2 hours at a time, have to stand up and move around for an hour then try to sleep again, seems to be far worse when laying down.

 

7 days after the injection, the pain is so bad, I rang the hospital and was told the pain is usually at its worse 7 days after treatment, due to tumour flare,

The support nurse said I can take Pregablin and the Morphine tablets together, I said but Drugs.com interaction site says not to use these together, she said its ok, your a cancer patient, not sure if that makes me feel special, or daft enough to mix these tabs.

Decided not to take her advice, bet I am on the phone again in a few days !

If the pain continues, will have to insist on a blast of radiation.

Will update as it continues after the 2nd jab, 21st March

 21st Feb 2017~ Radium starts today

Blood levels all ok, PSA up to 9 from 8.5

Having level 10 pain now, mainly in the left and right ribs where it all started. Cant even move left arm backwards.
None of the painkillers will touch it, the oncologist gave me a strong painkiller, Pregablin, that also does not touch the pain.
I am taking the morphine tablets as they seem the best although underpowered.
The liquid morphine suits me the best, but causes constipation

First Radium injection, painless and easily done.

22nd Feb

No side effects or pain relief yet, and I have noticed peripheral edima starting, swelling of the lower legs, a stated side effect of the Radium.

Same for the next 5 days, then, if like magic, the pain in my left side and spine has suddenly dropped to level 1, arm movement regained, the right side pain continues at level 10, can only sleep for a max of 2 to 3 hours at a time, have to stand up and move around for an hour then try to sleep again, pain is far worse when laying down.

28th Feb
7 days after the injection, the pain in my right ribs is so bad, feels like I am being tazered.
Rang the hospital and was told the pain is usually at its worse 7 days after treatment, due to tumour flare,
The duty nurse said I can take Pregablin and the Morphine tablets together, I said but Drugs.com interaction site says not to use these together, she said its ok, your a cancer patient. ?
The liquid morphine suits me the best, but causes constipation

1st March
Took 3 Pregablin and Oramorph at midnight to try to help me sleep, woke at 3.00am in agony, walked around a while and it eased a little

2nd March
3 hours sleep, woke up in absolute agony yet again, the pain is so bad now.

After ringing for help again, the duty nurse said someone would ring me.

Soon after, a registrar rang me, a very knowledgeable lady, who had put my scans on screen before ringing me.

She asked me where the pain was, I said in the right mid rib area, she said, yes, I think I can see the cause.

You have a lesion on your ribs next to the pleura, which is a lining between the ribs and lungs. Apparently this has lots of nerves in or on it, and would explain the pain when breathing in, as the lungs expand squashing the Pleura against the tumour on the rib.

Fri 3rd and Sat 4th March

Vomiting, cant keep food or drink down
Cant take medicine as it ejects in minutes

Sunday 5th March

Back to eating as normal

Throughout the next week, the pain continues, and I mix the Pregablin and Morphine, spacing them out through the day is the best effect, but by no means an elimination.

Sunday 12th March 2017

Now had 2 weeks of hell

The pain in the right ribs is unbearable, and can only be controlled, not eradicated, by doubling my morphine dose.

In addition, since Friday 3rd, I have started passing blood clots in my urine, every other pee, and some red cloudiness at the end of urinating.

Hadn't been too worried about this as it happened when I was on the chemo, Dr [name removed by Moderator] said this is quite normal, and something that has been intermittent.

When ringing the hospital, all I get told is to take more Morphine and Pregablin.

No one seems to understand the pain of the patient, it appears to be impossible to speak to the oncologist, who I think may have offered a blast of radiation ? to kill the cancer in the right rib


Monday 13th March 2017

Another night of hell and broken sleep on the sofa, not been to bed now for around 4 weeks.
Pain as usual in right rib area

The blood and clots in urine have lessened
Rang hospital yet again to seek help.
Oncologists secretaries phone goes to answer machine, and recommends ringing Nurse Practitioner.

Nurse Practitioner questions my details and history, and what is my problem.

I tell her I am on Radium 223 , having severe pain in ribs, and urine / blood problems, She asks me ''What is Radium 223'' Is it a new trial thing ?
Nurse told me to travel 15 miles to the hospital assessment unit or ring my GP.

I rang my local GP , explained the urine problem over the phone, and within 15 minutes was in the chemists for my prescription of anti-biotics, Nitrofurantoin , to treat what is hopefully just an infection.

Tuesday 14th March 2017

SEEMS STRANGE , only been on anti biotics for the waterworks infection for a day, the urine is now clear, and the cancer pain has lessened !
Stopped taking Nitrofurantoin, as it seems to have quickly done its job.

Some medicines, such as the antibiotics nitrofurantoin and rifampicin, can also turn your urine red or brown

9.00 am - Had to visit dentist for treatment of abscess on lower gum wisdom area, given Co Amoxiclav 250 / 125 , took one at 10 am , and one at 6 pm.

Had a growing lump on lower jaw for a couple of days, just same as I got on chemo 18 months ago.

Pain in right rib is strangely not the usual hell this morning, yet a new stab pain has appeared under left armpit rib area.


Wed 15th March

The rib pain is back, another broken nights sleep with the pain, then awoke at 5 am and could hardly bend my head backwards, from the base of my skull to my collarbone was very swollen and puffed up. The rear of my head was extremely itchy.
Got up and looked in the mirror, I was bright red, like sunburn, with puffy eyelids affecting my vision.
My torso was also red front and rear, feels like tight skin after too much sun.

Went to GP, who said it seems to be a reaction to the Co-Amoxiclav.
She prescribed Clarithromycin 500mg, and Loratadine10mg to reduce the swelling.


16th March

Prostap injection day
Eyes still very puffed up, but face / torso not as red, base of skull still itchy.

Mid morning, Passed a small, flat, rice grain sized, dark coloured thing in urine but no signs of blood.

Friday 17th March

Eyes still puffed up, and itchy skull / neck at lower rear, skin is not as red now

Pain still level 10 in right rib, no change at all since the injection, and returning in left rib, chest, and under armpit at level 2/3, but increases when coughing

Visit Weston Park for blood tests prior to next Tuesdays injection
Also took in urine sample as per form given to me by assistant nurse in Dr [name removed by Moderator] surgery last month

 

Saturday 18th March

Usual pain in right rib, and to a lesser extent in left rib and under armpit area, only had a few hours sleep

Sunday 19th March

Up at 3.00 am as usual, pace up and down to relieve pain.
Small trace of blood in urine again, only once all day, then late evening also passed a very tiny dot sized piece of red tissue ?

Pain was quite bad tonight, took 15mm Morphine 9.30 pm
10ml at 2.00 am


Monday 20th March

Last night, I took more Morphine than I have took before, and this seems to coincide with quite red urine this morning ?
This morning is the most red I ever recall seeing my urine.

Passed red urine 3 times this morning
Will restart Nitrofurantoin today as of 10.30 am
May be infection, may be Morphine ?

Urine seems to have cleared up by evening

Tuesday 21st March

01.30 awoke with back pains as usual
Passed urine, all clear

02.30am
Passed a 6mm round blood clot at the end of urinating
No pain is ever present in waterworks
4.00 am. Urine clear
7.00am. Urine clear
8.30am. Urine clear

My worries
The blood and clots in urine

The pain in right rib 10, thoracic spine 5, below left armpit rib 5 to 8, chest bone when coughing 8

Good points over the past 30 days -

The peripheral edima and sickness, caused by the medication, has cleared, the pain in left ribs has lessened a lot, but a new area has developed

CONCLUSION

Very similar to being on chemotherapy, lots of pain and problems, not much gain

 

Tuesday 21st March

11.20 appointment
Got in at 1.20

Oncologist not present for appointment Grrrrrrr-
Registrar stand in thinks Radium goes deeper than those who manufacture it say.
I complained about them just wanting to hide pain with drugs and not treating it
Registrar offered no radiation until I brought up the subject, then immediately got form out for me to have scan and palliative radiation to spine and right rib.

Radium injection 2.00 pm

Wed 22nd March
No problems, Feeling pretty good today, just the usual pain from hell, which can be reduced a lot with the morphine and Pregablin, but hiding it, and constipation the morphine causes is no way to treat a patient, when a blast on th ebig microwave would help.

Thurs 23rd March
A few pains in new places, under left and right armpit rib areas and front right of chest bone. Feeling pretty good today, then the sickness arrived, awful day, ejecting green bile, which must be my body dumping the poison they love to pour into me

Friday 24th March To be updated
Usual stuff I am afraid, pains, constipation, swollen legs, but the sickness has gone,

Waiting for appointment for radiation to relieve pain

Saturday 25th March

Back on food, back on beer, cut the lanw today and did quite a bit of diy stuff
Now baking a Steak and Potato pie and a joint of pork, what a marvellous life !!

Will update when something happens

 

Edited by moderator 25 Mar 2017 at 21:21  | Reason: Not specified

User
Posted 01 Mar 2017 at 11:00

 How long will I live after finding out I have PC ?

Over 7 years so far http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif , but after many pain free, and problem free years, now consider I am a ticking time bomb as things are escalating, and now on palliative care, Radium-223 the most expensive pain killer in the world, circa £50,000 for 6 injections, although the NHS are believed to get a 55% discount.

My name is Les from South Yorkshire, 61, first diagnosed in December 2009, and classed as aggressive, Gleason score 9, PSA 14, but no sign of spread.

Thank you for looking at my story, I have posted this as it may help folk get a general idea of what happens after diagnosis, although I do appreciate every case and outcome is different due to stage at diagnosis, and maybe more importantly, being placed in the care of a good Oncologist.

My Prostate story 2009 - 2017 and continuing -

 Commenced December 3rd 2009

 

Following a routine health check while living in Spain

Had no obvious symptoms, but Diagnosed with 14 PSA

 

2010 Feb / March , returned to England and saw a DR [name removed by Moderator] (lovely man) in Weston Park Sheffield

 

Scans + Biopsy = PC Confirmed and Diagnosed as the aggressive type

 

Gleason score 4 + 5 - put on 1 months Casodex

3 x 1 month Prostap injections

2010 June - August ~ 37 days radiation

 

PSA Lowered to app 2

 

Transferred to DR [name removed by Moderator] for follow up care.

 

2011 ok

2012 ok

2013 ok

 

2014 March time ~ Back pains started - had scans - found metasised on left upper rib bone, and an enlarged lymph node in pelvis 14mm

 

Oncologist tattooed my back for immediate radiation, then changed mind at last moment, saying he would save radiotherapy for the future, and put me on Prostap for life.

 

Back pain lessened greatly, but never disappeared

 

2014 Further scans showed more metastasis to right rib ~ PSA remained low

 

2015 PSA had risen to 14

 

I had now been with the same oncologist around 4 years

The Oncologist explained the Stampede trial to me, I was not officially on it, but could be treated with the same regimen, which could offer 4 years more survival over the standard anti androgen arm of care alone, Prostap.

 

I thought this was my best option, and was transferred to a Professor at Weston Park Sheffield

 

August 2015 ~

Oncologist briefly explained what Docataxel was, gave me a four sided printout to read and 10 minutes to decide if I wanted it.

Felt badly considered at the time, but signed under pressure and stress, as it seemed my only hope.

 

Put on 1 months Casodex, then steroids Prednisilone and Prostap monthly injection.

Started 6 x Docataxel, 3 weekly, didn't cope too well, many side effects, including many nerve related problems, anxiety, edema, and pneumonia which was treated by my local GP

(Insert update)

If I would have been told of both the immediate, and long lasting side effects of chemo, I would have refused it.

6 months of hell.

Also found out, most informed oncologists now use Enzaluteamide as a first line treatment, not Chemo.

 

During chemo treatment pre appointments, I saw 5 different consultants, and on one occasion a nurse, as no Oncologists were available

I was never given a key worker, that situation remains the same.

 

By December 2015 at the end of Chemo, my PSA lowered to 1.0 , the back pain had gone.

 

Now transferred to a new Oncologist.

 

Starting early 2016, within weeks of Chemo ending, the back aches returned, and my PSA doubled on 3 consecutive tests, all well below 3 months apart. I was offered no additional treatment.

 

This concerned me as I consider PSA doubling a very important factor, the Oncologist said yes it keeps doubling, but the number is too low to worry at this stage. I disagreed.

 

My own view was although PSA went 0.4 - 0.8 - 1.0 - 2.0 - 4.0 it was still a doubling, and that if bone lesions or tumours were developing, these too would be doubling in size, this has proved to be correct, as many areas of rib, and vertebrae are now metasised with lesions, the rib ones being as long as 110mm

November 7th 2016

At my scheduled meeting, and after almost a year of back pains, I said -

 

''The chemo has obviously not worked for me then ?''

The Oncologist said ''Yes it did, it was the previous hormone treatment you had been on that had failed'' That is why we put you on chemo.

 

I replied, I was not on any hormone treatment for 4 years, your predecessor put me on that, and Prostap, at the same time as the Chemo started, last August 2015

I am pretty sure if this guy would have been my regular onco, he would have not used chemo.

 

I felt at a loss that my history was not known in the hospital. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

 

So he said go straight in for a blood test before you leave the hospital, and I will order a CT Scan for you, then see me in late January

He also put me on Bicalutamide in addition to the usual monthly Prostap injection, for total androgen blockade, 7th November

 

End of November ~

My back ache has not lessened after 3 weeks on Biculatamide

It is not at a strong pain killer stage, but is in exactly the same rib areas as previously.

 

I started working things out and thought, why would I have a pre scan blood test, yet 3 weeks later have no CT appointment ?

 

So upon ringing the Oncologists secretary, 1st December 2016, and explaining my situation, she kindly returned my call and told me to stop taking Bicalutamide, and they would be in touch and put me on steroids.

 

I pondered this advice for several hours -

 

So rang back and asked for more info, explaining the Bicalutamide is causing no big problems and should be benefiting me, and why did he ask me to have immediate pre CT scan blood test, then no scan appointment comes through.

 

1st December   Secretary has emailed Onco and I await a reply

 

2nd December 2016

 

Oncologist rang me and said he had sent prescription to my GP for steroids, and to keep taking the Bicalutamide.

2mg one a day Dexamethasone for one week

Then 0.5gm ~ two per day for 7 days

Then 0.5gm one a day for 28 days

 

Booking me in for MRI scan within 2 weeks

Booking me an appointment re Radium 223

CT scan in January 2017

 

Next appointment with Onco mid January 2017

 

Took first steroid tablet 2MG Sat 3rd December 2016

Now lost ability to sleep with all the steroids

 

Went to bed at 2 am, was up at 3 am for 45mins

Awake most of nights

4th Dec 2016 Took 2nd steroid tab

5th took 3rd tab, aching a little at both sides this morning

went to bed at 2.30 am

6th took 4th tab 9.30 went to bed at 4 am

Received copy of oncos report to my GP today, oh dear, the facts refer to another patient ! so not exactly factual, referring to my bad lower back pain and inabilities, which I have none of !!

7th took 5th tab 10.30 , leading to another sleepless night

 

With the rib pain worsening, and no action, and asking for some answers, we now have some results.

 

My Oncologist rang me this morning, a long detailed discussion, and now putting me in for an MRI scan within 2 weeks to deep check me, he says MRI is better than CT scan for checking spine, so why not do it in the first place I wonder ?

 

Making me an appointment with oncos who do Radium 223 treatment, discussion and options, I don't want it too soon though, as it will only work for so long ?, so will decide after the scans

Radium 223 has very little side effects as it targets the c cells in the bones only.

The man who does the Radium is the Onco who was my first Dr. in 2010

 

Mid December 2016

 

The pains worsen and seem to be spreading across the back

Made several attempts to contact the onco, no return response.

 

Early Jan 2017

 

Pains now getting intolerable, again made attempts to contact onco, No response to me.

 

W/E 14th Jan 2017

 

Back pain worsens by the day and is now in center of back, went for regular PSA test at Weston park, asked for pain relief while there, not possible, gave me a phone number to ring, got home, rang, and it was Weston park where I had just been, some 15 miles away !, Duty nurse told me to take Ibuprofen, bad advice ! that is a no no with my current meds. So told me to go to A and E., sorry, this is England, I do not have 12 hours to spare waiting to see a Dr. who is not qualified in PC.

 

While in the hospital, I grumbled to a staff nurse about the lack of response from my ''care team'' of whom I know nothing, never ever given a key worker.

 

Next morning onco rang me, can you come straight in. Wow !

So Wed 11th, went to see him.

 

He confirms that MRI shows PC in spine thoracic area, he says its not dangerous, not near spinal cord.

I would have expected to be informed immediately when the scan results were found, hello - its in the spine !

He looked to see why the other onco he wrote to on 2nd Dec has not responded to his request to see me re radium 223.

 

He offered me to choose between Radium or Radiation, a bit difficult and hard for me, a vehicle mechanic by trade, to decide on the best cancer treatment.

Need results of PSA and CT scan before deciding.

He prescribed Morphine, which after 2 days, appears not to relieve my pain, no more than Paracetamol.

Upon self checking, it seems they prescribed me the dosage level for a 6 to 12 year old ! 2.5 to 5ml , the inner drug info instructions tell me it is double that for an adult.

 

Friday 13th Jan, Yes, Friday 13th ! rec letter to see Radium onco 24th Jan

 

Monday 16th app with regular onco, who should have CT scan and PSA results, then a decision can be made.

 

At the meeting he informs me my PSA is now 8.5 and the CT scan shows several new areas of metastasis to ribs and spine, but no visceral signs (not got to any organs)

 

The hospital give out a leaflet re bone pain and spine metastasis, they say it is important to get treatment in 3 days, they kept quiet about the results, then give me an appointment 3 weeks ahead !

  Of late, with all this worry, our quality of life has gone downhill rapidly, me with the pain and worry of the outcome, and my lovely wife, who is as effected as much, maybe even more than me, emotionally.

 7th Feb 2017

Now been 2 weeks since I saw Radium Onco, still no appointment for Radium, rang last week and was told it would be with me by now.

Rang onco secretary 9.50am

 

8th Feb, call still not returned, rang them and was told request has been sent re radium treatment, and was ASAP, and it is done on Tuesdays.

So as I would expect a weeks notice, can only presume I am at least two weeks away from treatment.

Secretary said she told doctor my pain was now quite bad, and I am anxious and sleepless, she said he did not appear too concerned and it was what would be expected in my case.

 

8th Feb

I must have got the ball rolling, A call to me from nuclear science at Sheffield Hallamshire, very helpful

 Booked me for Radium on 21st Feb 2017

Told me to get bloods tested Friday before, and would book me an appointment with Oncologist for the morning of the same day

 

15th Feb 2017

 

Just got written confirmation of 6 appointments for Radium 223 starting 21st Feb

 

Bone pain now driving me mad, Pregablin, Paracetamol, Ibuprofen, Co Codamol, standard Morphine dose, ALL no good,

 

So just bought a TENS machine from Lloyds chemist, read all the good reviews on Amazon ect. and chose the £11.99 double pad version.

 

The leaflet with it, and a lot of sites, say consult before using if you are a cancer patient, well, after 7 years of consulting, several hospital mistakes in my treatment, and so on, I now consult Doctor Google and work on a common denominator basis !

 

After all, it was Dr Google who said if my PSA kept doubling in short periods of time, that the cancer may well also be doing the same. Sorry Mr Onco, but Dr. Google was right.

 

Dr Google said what have you got to loose ? Some say TENS machines can kill cancer cells, but I doubt that !

Some say it can make them more active, maybe true, So here we go, batteries in and stick it over the worst two ribs.

 

Best take it steady away with the first use -

 30 Minute session on a pretty low setting (3) no noticeable difference

Lets turn it up a bit

30 Minutes on setting 8, no noticeable difference

Lets turn it up a bit more

30 minutes on setting 10, now I can feel it pulsing and Yes, I would say a 50% reduction in pain, at last !

 

Took 2 Co Codamol tablets straight after the self induced electrocution, and now writing this some 4 hours later and virtually pain free. First time in weeks.

 

Now I do not know if I have agitated the cancer cells, not even the experts can answer that, but hey, I am almost painless, and at my stage of this nasty disease, just like Tesco bread, don't have too long before my expiry date anyhow, so what's a few agitated cells among friends.

Sadly, on trying it a 2nd and a 3rd time, the effect seems to have lessened quite a lot.

 

Will update this profile as the Radium 223 treatment starts

 

21st Feb ~ Radium starts today

 

Having level 10 pain now, mainly in the left and right ribs where it all started. Cant even move left arm backwards.

None of the painkillers will touch it, the onco gave me a strong painkiller, Pregablin, that also does not touch the pain.

I am taking the morphine tablets as they seem the best although underpowered.

 

First Radium injection, painless, if not a bit scary when the nuclear medicine staff walk in fully protected, like a practice for chemical warfare, or an Ebola outbreak.

 

22nd Feb

No side effects or pain relief yet, but the Morphine is causing constipation, and I have noticed peripheral edima starting, swelling of the lower legs, a side effect of the Radium.

 

Same for the next 5 days, then, if like magic, the pain in my left side and spine has suddenly dropped to level 1, arm movement regained, the right side pain continues at level 10, can only sleep for a max of 2 hours at a time, have to stand up and move around for an hour then try to sleep again, seems to be far worse when laying down.

 

7 days after the injection, the pain is so bad, I rang the hospital and was told the pain is usually at its worse 7 days after treatment, due to tumour flare,

The support nurse said I can take Pregablin and the Morphine tablets together, I said but Drugs.com interaction site says not to use these together, she said its ok, your a cancer patient, not sure if that makes me feel special, or daft enough to mix these tabs.

Decided not to take her advice, bet I am on the phone again in a few days !

If the pain continues, will have to insist on a blast of radiation.

Will update as it continues after the 2nd jab, 21st March

 21st Feb 2017~ Radium starts today

Blood levels all ok, PSA up to 9 from 8.5

Having level 10 pain now, mainly in the left and right ribs where it all started. Cant even move left arm backwards.
None of the painkillers will touch it, the oncologist gave me a strong painkiller, Pregablin, that also does not touch the pain.
I am taking the morphine tablets as they seem the best although underpowered.
The liquid morphine suits me the best, but causes constipation

First Radium injection, painless and easily done.

22nd Feb

No side effects or pain relief yet, and I have noticed peripheral edima starting, swelling of the lower legs, a stated side effect of the Radium.

Same for the next 5 days, then, if like magic, the pain in my left side and spine has suddenly dropped to level 1, arm movement regained, the right side pain continues at level 10, can only sleep for a max of 2 to 3 hours at a time, have to stand up and move around for an hour then try to sleep again, pain is far worse when laying down.

28th Feb
7 days after the injection, the pain in my right ribs is so bad, feels like I am being tazered.
Rang the hospital and was told the pain is usually at its worse 7 days after treatment, due to tumour flare,
The duty nurse said I can take Pregablin and the Morphine tablets together, I said but Drugs.com interaction site says not to use these together, she said its ok, your a cancer patient. ?
The liquid morphine suits me the best, but causes constipation

1st March
Took 3 Pregablin and Oramorph at midnight to try to help me sleep, woke at 3.00am in agony, walked around a while and it eased a little

2nd March
3 hours sleep, woke up in absolute agony yet again, the pain is so bad now.

After ringing for help again, the duty nurse said someone would ring me.

Soon after, a registrar rang me, a very knowledgeable lady, who had put my scans on screen before ringing me.

She asked me where the pain was, I said in the right mid rib area, she said, yes, I think I can see the cause.

You have a lesion on your ribs next to the pleura, which is a lining between the ribs and lungs. Apparently this has lots of nerves in or on it, and would explain the pain when breathing in, as the lungs expand squashing the Pleura against the tumour on the rib.

Fri 3rd and Sat 4th March

Vomiting, cant keep food or drink down
Cant take medicine as it ejects in minutes

Sunday 5th March

Back to eating as normal

Throughout the next week, the pain continues, and I mix the Pregablin and Morphine, spacing them out through the day is the best effect, but by no means an elimination.

Sunday 12th March 2017

Now had 2 weeks of hell

The pain in the right ribs is unbearable, and can only be controlled, not eradicated, by doubling my morphine dose.

In addition, since Friday 3rd, I have started passing blood clots in my urine, every other pee, and some red cloudiness at the end of urinating.

Hadn't been too worried about this as it happened when I was on the chemo, Dr [name removed by Moderator] said this is quite normal, and something that has been intermittent.

When ringing the hospital, all I get told is to take more Morphine and Pregablin.

No one seems to understand the pain of the patient, it appears to be impossible to speak to the oncologist, who I think may have offered a blast of radiation ? to kill the cancer in the right rib


Monday 13th March 2017

Another night of hell and broken sleep on the sofa, not been to bed now for around 4 weeks.
Pain as usual in right rib area

The blood and clots in urine have lessened
Rang hospital yet again to seek help.
Oncologists secretaries phone goes to answer machine, and recommends ringing Nurse Practitioner.

Nurse Practitioner questions my details and history, and what is my problem.

I tell her I am on Radium 223 , having severe pain in ribs, and urine / blood problems, She asks me ''What is Radium 223'' Is it a new trial thing ?
Nurse told me to travel 15 miles to the hospital assessment unit or ring my GP.

I rang my local GP , explained the urine problem over the phone, and within 15 minutes was in the chemists for my prescription of anti-biotics, Nitrofurantoin , to treat what is hopefully just an infection.

Tuesday 14th March 2017

SEEMS STRANGE , only been on anti biotics for the waterworks infection for a day, the urine is now clear, and the cancer pain has lessened !
Stopped taking Nitrofurantoin, as it seems to have quickly done its job.

Some medicines, such as the antibiotics nitrofurantoin and rifampicin, can also turn your urine red or brown

9.00 am - Had to visit dentist for treatment of abscess on lower gum wisdom area, given Co Amoxiclav 250 / 125 , took one at 10 am , and one at 6 pm.

Had a growing lump on lower jaw for a couple of days, just same as I got on chemo 18 months ago.

Pain in right rib is strangely not the usual hell this morning, yet a new stab pain has appeared under left armpit rib area.


Wed 15th March

The rib pain is back, another broken nights sleep with the pain, then awoke at 5 am and could hardly bend my head backwards, from the base of my skull to my collarbone was very swollen and puffed up. The rear of my head was extremely itchy.
Got up and looked in the mirror, I was bright red, like sunburn, with puffy eyelids affecting my vision.
My torso was also red front and rear, feels like tight skin after too much sun.

Went to GP, who said it seems to be a reaction to the Co-Amoxiclav.
She prescribed Clarithromycin 500mg, and Loratadine10mg to reduce the swelling.


16th March

Prostap injection day
Eyes still very puffed up, but face / torso not as red, base of skull still itchy.

Mid morning, Passed a small, flat, rice grain sized, dark coloured thing in urine but no signs of blood.

Friday 17th March

Eyes still puffed up, and itchy skull / neck at lower rear, skin is not as red now

Pain still level 10 in right rib, no change at all since the injection, and returning in left rib, chest, and under armpit at level 2/3, but increases when coughing

Visit Weston Park for blood tests prior to next Tuesdays injection
Also took in urine sample as per form given to me by assistant nurse in Dr [name removed by Moderator] surgery last month

 

Saturday 18th March

Usual pain in right rib, and to a lesser extent in left rib and under armpit area, only had a few hours sleep

Sunday 19th March

Up at 3.00 am as usual, pace up and down to relieve pain.
Small trace of blood in urine again, only once all day, then late evening also passed a very tiny dot sized piece of red tissue ?

Pain was quite bad tonight, took 15mm Morphine 9.30 pm
10ml at 2.00 am


Monday 20th March

Last night, I took more Morphine than I have took before, and this seems to coincide with quite red urine this morning ?
This morning is the most red I ever recall seeing my urine.

Passed red urine 3 times this morning
Will restart Nitrofurantoin today as of 10.30 am
May be infection, may be Morphine ?

Urine seems to have cleared up by evening

Tuesday 21st March

01.30 awoke with back pains as usual
Passed urine, all clear

02.30am
Passed a 6mm round blood clot at the end of urinating
No pain is ever present in waterworks
4.00 am. Urine clear
7.00am. Urine clear
8.30am. Urine clear

My worries
The blood and clots in urine

The pain in right rib 10, thoracic spine 5, below left armpit rib 5 to 8, chest bone when coughing 8

Good points over the past 30 days -

The peripheral edima and sickness, caused by the medication, has cleared, the pain in left ribs has lessened a lot, but a new area has developed

CONCLUSION

Very similar to being on chemotherapy, lots of pain and problems, not much gain

 

Tuesday 21st March

11.20 appointment
Got in at 1.20

Oncologist not present for appointment Grrrrrrr-
Registrar stand in thinks Radium goes deeper than those who manufacture it say.
I complained about them just wanting to hide pain with drugs and not treating it
Registrar offered no radiation until I brought up the subject, then immediately got form out for me to have scan and palliative radiation to spine and right rib.

Radium injection 2.00 pm

Wed 22nd March
No problems, Feeling pretty good today, just the usual pain from hell, which can be reduced a lot with the morphine and Pregablin, but hiding it, and constipation the morphine causes is no way to treat a patient, when a blast on th ebig microwave would help.

Thurs 23rd March
A few pains in new places, under left and right armpit rib areas and front right of chest bone. Feeling pretty good today, then the sickness arrived, awful day, ejecting green bile, which must be my body dumping the poison they love to pour into me

Friday 24th March To be updated
Usual stuff I am afraid, pains, constipation, swollen legs, but the sickness has gone,

Waiting for appointment for radiation to relieve pain

Saturday 25th March

Back on food, back on beer, cut the lanw today and did quite a bit of diy stuff
Now baking a Steak and Potato pie and a joint of pork, what a marvellous life !!

Will update when something happens

 

Edited by moderator 25 Mar 2017 at 21:21  | Reason: Not specified

User
Posted 01 Mar 2017 at 13:07

Muchas gracias Lola,
Vivimos en valencia durante 7 años, tiempos muy felices.
Abrazos y besos son apropiados, pero no tanto como en tu hermoso país
Salud

Show Most Thanked Posts
User
Posted 01 Mar 2017 at 12:48

Hi, Less777.

I'm also new here. so there's not much I can say.

I wish your pain does not continue anymore.

Come on, guy! The matter will go better.

Maybe saying "big hug" is not apropriate, I'm not sure, but since I'm Spanish, I'm "entitled to". So, big hug from Galicia.

Get well!!

User
Posted 01 Mar 2017 at 13:07

Muchas gracias Lola,
Vivimos en valencia durante 7 años, tiempos muy felices.
Abrazos y besos son apropiados, pero no tanto como en tu hermoso país
Salud

User
Posted 01 Mar 2017 at 14:47

F'king hell Les. I don't know what to say except that you seem to have been very badly served in recent times. This is in such direct contrast with my experiences I find it difficult to comprehend.

The only suggestion I can make is to try to get your GP or Oncologist to get you referred to your local hospice pain management team because if anyone can get your pain management right then it will be them.

I wish you the best mate.

David

User
Posted 01 Mar 2017 at 16:13

F'king hell indeed! Please see the post I've just put up re palliative care Les (Plan F. holistic approaches are epic). We had the out-of-hours people round two weekends running and my OH was in absolute agony. All sorted now, along with a chaos of side-effects and counter side-effects thanks to one one-the-ball onco and a superb palliative care team. It really doesn't have to be this way. Please insist on an immediate referral.

Do let us know how you get on. Will be thinking of you.

Eleanor

x

User
Posted 01 Mar 2017 at 20:20

hi les

read re your probs with chemo, I had virtually no problems with it, have also had a week of RT, needless to say I will not have it again, did nothing for me apart from making me feel worse

appears you are having as much fun and trust in the sth yorks onco department as I am, keep telling us its a centre of excellence jurys been out for awhile on that

hope you can get the help you need, have you considered moving to another for treatment

 

regards

nidge

 

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 01 Mar 2017 at 23:31


If I would have been told of both the immediate, and long lasting side effects of chemo, I would have refused it.
6 months of hell.
Also found out, most informed oncologists now use Enzaluteamide as a first line treatment, not Chemo.

Pretty torrid experience, for which I am sorry for you, but I think you have misunderstood the August 2015 decision to put you on chemo. This was right at the time that new and very exciting research was showing that men with advanced PCa do far better if they are put onto early chemo - it seems to make hormone treatment more successful for longer. Also, under NICE guidance, you couldn't have enzo until after you have had chemo so it was a necessary evil I am afraid. I don't think many members on here have found chemo quite as dreadful as you did; some manage to carry on working throughout!

Just as a note, it would be best if you edit your post to remove the names of your doctors. We have very few rules on this site but naming medical professionals is an absolute no-no :-(

Edited by member 01 Mar 2017 at 23:31  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Mar 2017 at 04:53

How are you doing today, Les?

I hope your pain becomes lesser today.

I cross my fingers and toes for it.

Hug and kisses from Spain!

User
Posted 04 Mar 2017 at 15:02

Sounds a pretty torrid experience Les. I am under the same team. These are the ones who told me they would not use HT until the PSA got into the 20's.

I hope you get sorted. Could you ask to be referred elsewhere if you are not happy.

Bri

User
Posted 25 Mar 2017 at 20:58

Hi,

I have certainly not misunderstood anything about my treatment, and am fully aware of all the facts.

Enzo has been available at the clinicians discretion, before chemo, since early 2013, once available, it had to be an option, some poor folk are too ill to be poisoned with Docataxel

When I was put on chemo and prostap, 2015, aka the Stampede trial regime, I was not aware of the updated trial results, although the oncos were.

The OS outlooks were far poorer than first reported in stage one and two interim results , but they still told me it was the best option, lying for a price..

The new onco i got after the chemo said he would not have hesitated to give me enzo, and had patients on it for four years.

From your comments about the chemo, and stating that not many on here seem to suffer from it, possibly because, sadly, they have passed away.

You may find this useful - It will show that around 50% of people die because of the chemo side effects, not the cancer

http://www.telegraph.co.uk/science/2016/08/30/chemotherapy-warning-as-hundreds-die-from-cancer-fighting-drugs/

As it always said on the NICE website - Enzaluteamide can be given at the clinicians discretion 'only when the company provides it with the discount agreed in the patient access scheme.'''

They have now started installing £1 SHOP signs above the hospitals !

If you wish to ''lecture'' me again, please do be kind enough to say ''H''i or ''Hello'' at the start of your advice, and maybe at the end, even offer regards or best wishes, not a lot to ask.

Best wishes

User
Posted 25 Mar 2017 at 23:16
Hi Les

Like previous posters have said: F'king hell.

I've had a lot of treatment but not had half as much as you, I have had Docetaxel and I suffered badly. I finished it 4 months ago and although I'm miles better than I was I'm still having a few after effects. I can't imagine how anybody would be able to work while they were on it. Maybe they were on lower doses than us?

Thanks so much for putting everything down in writing on here because it's so helpful and informative. I sincerely wish you all the best!

Jim

User
Posted 26 Mar 2017 at 02:21

Fortunately for us, none of the members of this forum have died as a result of the chemo although my father-in-law did suffer serious heart damage because of it. However, he knew the risks and made a choice; not necessarily the one we wanted him to but it was his right.

Not a lecture - just offering what was intended as a supportive response to your very long introductory post while typing on a tiny keyboard on a mobile phone. Perfunctory by necessity, that's all.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Mar 2017 at 10:31
Les

Thank you for your story. I'm 46 and had a prostatectomy a few months ago. My PSA results have been good since but my oncologist has warned me that it is extremely likely that this will be a condition we will have to manage in the future. I know I will most likely have several decent years before I get to what one might call the bad years. Because the bad years are probably years away, there can be a tendency to avoid trying to face up to the negative inevitabilities and so in some ways I found your honesty and openness helpful.

The one thing that I've struggled with the most with PCa is that I don't feel ill. I'm not in pain and, apart from the surgery, I never have been. And yet I have something inside that will probably kill me at some stage. You got 7 good years. I'm obviously hoping for more.

Thanks for your post and I hope they sort out your pain management.

Ulsterman

 
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