In the motor trade and lived all my life in same village in north wiltshire.
Married to Pam for 38 years, daughter Suzi 25 graduated from Exeter Uni and now working in Darlington college, son Tom 20 left school and started an apprenticeship in carpentry and joinery and is doing very well.
Diagnosis finally confirmed cancer 10th May 2005.(Pams' birthday)
Biopsy 2/4 cores left and 2/6 cores right malignant.
Had RP 13th June 2005.
Histoligy showed positive extraprostatic surgical margins and extracapsular perineural invasion, capsular breach
gleeson up to 3+4=7.
total volume= 6.4ml
Seminal vesicles clear,
lymph nodes clear.
First post opp test 26th July 0.4
Second test 25th August 0.3
Third test 27th September back to 0.4
Seing oncologist to arrange RT
Had bone scan and another MRI
Thank god all clear.
RT started 1st november 2005 33 treatments (X 2 Gray =66 Gray)in Bristol.
Finished RT Dec 15th 05 after quite a rough ride, very painfull bowel problems and urinary continence back to square one ie,very little. Had three PSA tests during RT treatment each one showing an increase 0.5 0.6 0.7
Significance of this during RT unknown readings taken for research purposes.
PSA result 22/5/06 gone up to .6 absolutely gutted seeing the onco on 25th May
PSA 15th Sept06 it's gone up again 0.9 saw Onco 18th Sept. he wasn't too worried (I am!)he said that my doubling time was 5.9 months which is quite good...apparently. wants further PSA in three months and is hoping that it will level off around 1.5. says intervention will be needed when/if it reaches 2.0 Also admitted the RT was a total failure.He
recommended various supplements
Dec 11th 06 PSA gone up to 1.7 that's nearly double in only three months, not looking good. Have to have another PSA in January and see the onco to decide on what to do next.
Jan 15th 07 bad news Again PSA has gone up again to 2.5
waiting for onco appointment.
Saw onco today 18th Jan 07 and he has advised I start on Casodex 150mg, but I requested another month and then PSA test to finally convince myself that it is necessary. Here's hoping!
Well after a drop in february 07 to 2.4 its gone back up again on 6th March to 3.3.
Oncologist has given me another month to see if it is going to stabilise there before starting on the hormones.
Well it didn't stabilise there and has gone up to 4.0 on 5th April 2007. My onco has prescribed Casodex 150 and I will start taking them daily on 7th May 07. I am dreading even more side effects.
14th June PSA gone down to 0.7 so Casodex is working. 29th June had first of three RT blasts to very sore titties (5 grays a time)
Side effects so far are very sore and enlarged breasts, maybe a bit more tired and do seem to get a bit hot but not exactly a flush.....yet!
Next PSA 17th July if it's gone down to 0.2 or less I will stop the Casodex until it goes back up to 4.0 (intermitent)
After much research and a chat with my onco I have decided to stay on the Casodex a little longer and see if it will go down to 0.1 before I consider intermitent.
I think this will give me the best chance of killing off the cancer cells as the longer they are deprived of testosterone the better!
July 17th 2007 PSA down TO 0.5
August 15th PSA down to 0.4
Setember 13th PSA still 0.4
October 12th PSA down to 0.3
Nov 12th PSA down again 0.2
December 6th still 0.2
January 8th 2008 still 0.2
Feb 8th still 0.2
March 7th still 0.2
April 4th still 0.2
May 1st still 0.2
May 30th gone up to 0.3
June 29th gone up to 0.5
July 24th gone up to 0.8
September 9th up to 2.4
This latest big rise (tripled in six weeks) is very worrying. Spoke to Onco and will be starting Zoladex next week
Sept 18th still 2.4 (since found out that this test wasn't in fact done as the laboratory decided I didn't need it as it was 'only' 2 weeks since the previous one!Arrogant Ba***rds! so I don't know what the level was at the start of Zoladex.
Sept 18th 2008 first Zoladex (monthly) implant.
Oct. 16th second monthly Zoladex implant.
Oct.30th first BT since start of Zoladex gone down to .7 and Testosterone is 1.0 Spoke with Oncologist and he is pleased with this. After initial side effect of more fatigue this now isn't so bad but at 7 weeks the hot flushes have started, but not too bad. Onc has prescribed Cyproterone acetate 100mg once a day to counteract the flashes but I think I'll wait a while before starting on them as I'm not keen on "one drug chasing another" if you know what I mean.
November 3rd third Zoladex implant Bts to be 6 weekly for now which suits me.
11th December 2008 PSA 0.4 T up a little to 1.3.
Much more hot flushes now day and night.
22nd January 2009 PSA down again one point at 0.3 and T up a little again at 1.4
5th March oh Dear, PSA gone up to .5 and testosterone still 1.4.
Spoke to Onco and after my sugestion has started me on Cyperotone Acetate tablets 100mg one a day alongside the monthly Zoladex implants. I wanted to try these instead of the usual casodex 50mg because a good side effect of the Cyperotone is that they help with the hot flashes, in fact better than that I can report they have gone completely! Here's hoping the Psa is also down. I find out tommorow 21st April 2009.
Well really bad news PSA up to 1.6 That's trippled in only six weeks even though my Testosterone is at castrate level of .7. Things aint looking good again, Onco has ordered another blood test four weeks after the last ie, 14th May then see him Thursday 21st to decide what to do next. I don't know what else he can do apart from Chemo?
14th May 2009 PSA up to 2.5
Testosterone up to 1.2 After meeting with onco have added Casodex 50mg to mix, next blood test 4 weeks (also started drinking only green tea and cut out dairy products.Onco
also ordered new scans MRi, CT, and Bone.
19th June 2009 better news! PSA down to 2.1 and T down to .7 next test six weeks.
25th June 2009 scan results back, bones clear but CT and MRI are now showing Lymph Nodes involvement (two are enlarged) this is probably why the PSA is so reluctant to go down. Onco thinks there may have been involvement right from the begining even though my original scans were clear.
29th July good news again! Psa down to 1.5 and T at an alltime low of .3
Either the Casodex or the green tea no dairy is working or all three, either way well pleased next test six weeks.
17th Sept PSA down to 1.3 T up to .6
28th Jan 2010 PSA up to 1.8 T down to .3
11th March PSA up to 2.5 T still .3
4th May PSA up to 4.0 T .5
13th May full reassesment by Oncologist CT and MRI scans.
21st May scan results show little change from 12 months previous.Stopping
Casodex to see if that brings the PSA back down.
1st July (9 weeks since last PSA) PSA up to 4.9 T down to .3 Onco says test again in six weeks to see if the "slowing down" continues.
12th August PSA up to 7.5 T same at .3
25th August started triple AT Zoladex Casodex 50 plus Avodart, see if that does the trick!
7th October looks like it night be working, slight drop PSA 7.2 T remains at .3
18th November PSA 10.2 and T still at .3 **** that's not what I expected.
30th November stopped Casodex again to see if that helps.
31st December, crap it didn't PSA shot up to 25.5 and T up to .7 and that's in only six weeks!! Now I am really woried. Onco says test again in 4 weeks and further large rise will mean all scans to be repeated. Still hoping to get on Prevail trial but if PSA keeps on rocketing will have to intervine before with something, don't know what as I still am dead against Chemo.
1st Feb 2011 PSA up again to 30.4 and T back at .3
24th Feb Psa up to 47.8 T still .3
2nd March stated casodex again at 150mg
31st March PSA up again 57 T .4
28th March PSA up again 69 T .6
5th May stopped all meds except Zoladex in preparation for Prevail trial.
20th June CT scan of pelvis abdomen and chest (awaiting results)
22nd June full body bone scan (awaiting results)
Next appointment with onco is 5th July when I will get results of scans and hopefully go forward after other tests with the Prevail MDV3100 trial, god only knows what my PSA is now as no test since end of March.
Have been getting quite a bit of back pain recently, I have had a bad back for years but this feels different.
5th July, appointment with onco at Bristol Oncology, (first on NHS because of trial) and he wasn’t there, saw his registrar who informed me I have extensive bone mets but didn’t have my CT report. Gave me information re the Prevail trial had a chat with the trial nurse and given an appointment for next Tuesday.
12th July. Back to Bristol O/C had numerous tests ecg etc with trial nurse saw Onco and signed all paperwork for Prevail trial. Have to return next Tuesday for further tests and hopefully start the trial.
19th July more tests three ECGs bloods etc was told my PSA last Tuesday was 140! Had another examination from my onco and accepted onto the trial! Given my pot of meds (or placebos) and take the first dose at the hospital.
I also now have the full report of my CT and Bone scans, not good, bone scan now shows extensive mets in spine, sternum, pelvis, ribs and shoulders. CT scan shows extensive mets to lymph nodes in chest cavity and pelvic region, and all this in less than a year when my last scans showed no bone mets and only two nodes in the pelvic area.
For a couple of months now I have been experiencing quite bad back pain which I thought was not my “usual” pain and obviously this now proves to be due to the bone mets, can hardly believe how quickly the cancer is now taking hold.
Trial nurse phoned me Monday 25th to see how I am fairing and informed me my PSA last Tuesday the day I started the trial had gone Down to 125! That was before starting the MDV3100 (or placebo)
28th July have been on the trial for 10 days now, back and leg pain quite bad, restless legs at night preventing sleep and generally feel quite crap especially for three hours or so after taking the meds? Maybe it is the drug?
Next appointment and tests 16th August.
Latest News: Started the the Prevail trial 19th July 2011