YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

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Phil Clarke and Pam live in United Kingdom. He was 54 when he was diagnosed on 10th May 2005. His initial PSA was 6.5 ng/ml, his Gleason Score was 3+3. IT is not clear what his clinical staging was but it appears he may have been staged T1c, although his pathological staging was pT3aN0. His choice of treatment was Surgery. Here is his story.

In the motor trade and lived all my life in same village in North Wiltshire England. Married to Pam for 35 years, daughter Suzi 22 graduated from Exeter University and now teaching in Greece, son Tom 17 left school and started an apprenticeship in carpentry and joinery.

Diagnosis finally confirmed cancer 10th May 2005.(Pams' birthday) Biopsy 2/4 cores left and 2/6 cores right malignant. Gleason 3+3: PSA 6.5.

Had Radical Prostatectomy on 13th June 2005. Histology showed positive extraprostatic surgical margins and extracapsular perineural invasion, capsular breach Gleason up to 3+4=7. The total volume of the tumour was 6.4ml; Seminal vesicles clear; Lymph nodes clear; Stage pT3aN0

First post operation test 26th July - PSA 0.4; Second test 25th August PSA 0.3; Third test 27th September back to PSA 0.4. Seeing oncologist to arrange EBRT (External Beam Radiation Therapy). Had bone scan and another MRI. Thank god all clear.
EBRT started 1st November - 33 treatments (X 2 Gray = 66 Gray) in Bristol.

Finished RT Dec 15th 2005 after quite a rough ride, very painful bowel problems and urinary continence back to square one i.e. 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 May 22, 2006 gone up to 0.60 absolutely gutted seeing the oncologist on 25th May PSA. 15th Sept, 2006 it's gone up again 0.9 saw oncologist 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 2006 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 oncologist to decide on what to do next.

Jan 15th 07 bad news Again PSA has gone up again to 2.5 waiting for oncologist 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 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. 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 (intermittent) 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 intermittent. 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 PSA down TO 0.5
August 15th PSA down to 0.4
September 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 first Zoladex (monthly) implant.
Oct. 16th second monthly Zoladex implant.
Oct.30th first blood test since start of Zoladex gone down to 0.7 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 blood tests to be 6 weekly for now which suits me.

Latest News: 30th October PSA down to .7 and Testosterone 1.0

 

UPDATED

January 2011

 

 

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 2009 Oh Dear! PSA gone up to 0.5 and testosterone still 1.4. Spoke to Oncologist and after my suggestion has started me on Cyproterone Acetate tablets [aka Androcur ] 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 Cyproterone 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 tomorrow

21st April 2009. Well really bad news PSA up to 1.6 That's tripled in only six weeks even though my Testosterone is at castrate level of 0.7. Things ain't looking good again, Oncologist has ordered another blood test four weeks after the last i.e., 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 oncologist 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 beginning even though my original scans were clear.

29th July 2009 good news again! PSA down to 1.5 and T at an all time low of 0.3 Either the Casodex or the green tea/no dairy is working or all three, either way well pleased next test six weeks.

17th Sept 2009 PSA down to 1.3 T up to .6

28th Jan 2010 PSA up to 1.8 T down to .3

11th March 2010 PSA up to 2.5 T still .3

4th May 2010 PSA up to 4.0 T .5 13th May full reassessment by Oncologist CT and MRI scans.

21st May 2010 scan results show little change from 12 months previous. Stopping Casodex to see if that brings the PSA back down.

1st July 2010 (9 weeks since last PSA) PSA up to 4.9 T down to 0.3 Onco says test again in six weeks to see if the "slowing down" continues.

12th August 2010 PSA up to 7.5 T same at .3

25th August 2010 started triple ADT: Zoladex Casodex 50 plus Avodart, see if that does the trick!

7th October 2010 looks like it might be working, slight drop PSA 7.2 T remains at .3

18th November 2010 PSA 10.2 and T still at .3 shit that's not what I expected.

30th November 2010 stopped Casodex again to see if that helps.

31st December 2010, 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 worried. 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 intervene before with something, don't know what as I still am dead against Chemo.

Latest News: Latest PSA up again to 25.5 and T UP at 0.7

 

UPDATED

February 2011

 

 

1st February 2011 PSA gone up again albeit a bit slower, to 30.4 and T has gone back to 0.3, this could account for the slowing down

My Oncologist says to not change anything yet and go another four weeks and test again, hoping that the increases will be small again and bide our time until I can hopefully get on the Prevail trial. If the next test shows a another big jump then I am to re-add Casodex but at the higher strength of 150mg and see if that does the trick for a while, if not by then I should be able to start the trial (around late March).

My oncologist is reluctant to give me other drugs such as DES, DEXA or Ketoconazole as taking these would exclude me from the trial and we see the trial as my best hope at this stage.

Here's hoping!!

Phil's e-mail address is: ZX9RPHIL@AOL.COM