YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

EXPERIENCES : DISCUSSION FORUM : FOR THE WOMENFOLK : ABOUT US : UPDATE YOUR STORY : MAIL US : DONATIONS

YANANOW HOME PAGE : DON'T PANIC : GOOD NEWS! : DIAGNOSIS : SURVIVING : TREATMENT CHOICES : RESOURCES

 

SILVER

Alan Charlton and Beryl live in England. Alan was 52 when he was diagnosed on 22 January 2003. His initial PSA was 1,500 ng/ml and his Gleason Score was 5+4=9. He was staged T4 and his only treatment option was Hormone. Here is his story:

Hi,

My story started back in November 2002. My wife Beryl advised me to stop drinking ( I was drinking a bottle of red wine every evening) as I was always tired and felt listless exhausted , so I took her advice.

Two months later I collapsed with unbearable pains in my back, was taken to hospital and found that I had advanced prostate cancer that had metasized to my bones (the whole skeleton) - this was after 2 bone scans.

The consultant put me on Zoladex, and sent me home , with six months to two years to live.

I was not happy with the urologist, so set about seeing a oncologist, who turn out to be a woman. She promptly gave me only 6 to 9 months to live. By this time I had gone back to the wine, and started to feel a bit better, so I went to see another urologist.

He was very good although his prognosis was about a year. He offered me Zometa and also Casodex as my PSA had started to rise after several months of lowering PSAs. He felt that i was not one to give in so sent me to a neighbouring county to see yet another oncologist, who said the medical world could do no more , only that my inner self-belief could keep me going.

Well I do believe my inner self-belief is working with the aid of a bottle of red wine a day. The last eight months has seen my psa stablise to 0.10 ng/ml, today's date is 1 March 2005 - over two years since my diagnosis, and I never felt better.

Never say die!

 

UPDATED

September 2006

 

This year has been a good year, however PSA has started to rise, from 0.1 ng/ml to 2.1 ng/ml but urologist doesn't think its time to change any treatments as yet, so I have been adding various supplements, Isoflavones, Spirulina, Chlorella.

I don't see the urologist again until mid October.

 

UPDATED

May 2008

 

 

2007: PSA started this year at 4.0 and finished this year on 17.7. No change of treatment still feeling good , no pain ,swim half a mile every day, living life to the full.

2008: sees my PSA rise to 45.7 . By May have now added Avodart to the list of hormone therapy, Zoladex, Casodex and Zometa.

 

UPDATED

September 2009

 

 

24th July 2008: started on ethynylestradiol 1mg ( 1 tablet a day ) + 75mg aspirin and stopped Casodex 150mg still no pain and feeling fine

28th August 2008: PSA down to 82.8

14th September 2008: stopped all painkillers

22nd September 2008: PSA down to 74.2

21st October 2008: PSA up to 100.4

10th November 2008: PSA up to 159.4

25th November 2008: PSA up to 192.6 stopped oestrogen back on Casodex 150mg

8th December 2008: PSA up to 207.5

16th January 2009 PSA up to 243 no pain no problems

9th February 2009: PSA up again to 365

24th February 2009: saw urologist started me back on Avodart booked me for MRI scan, changed my Zometa timing will now have Zometa every 21 days instead of 28 days, told me my original PSA at diagnosis was 2,100 not 1,500 as I was led to believe. I'm still feeling good , thanks to the red wine.

March 9, 2009 PSA up to 526. No pain , feeling perplexed to the increase , all my other blood test are very good, will carry on regardless.

April 3, 2009: PSA now at a staggering 1,252 - still swimming half a mile a day still feeling fine ,bone scan shows increased activity to left femur and spine and right ribs and hot spots to my skull ; still feeling positive , stopped Casodex and Avodart. Consultant yet to be informed , feeling fine , started low dose steroid dexamethasone.

25th June 2009: PSA down to 1,370 still feeling good; no pains, must be the steroids.

17th July 2009: PSA 1,361

28th July 2009: PSA 2,365 yet still remain with that ,good to be alive feeling 1

7th August 2009: PSA 1,627 still feeling well

25th August 2009: PSA 1,958 consultant thinks starting back on Casodex and Avodart, may have a good response after being off them for five months

September 7th 2009: PSA 1,002 cancer specialist now thinks that since having Zometa every three weeks instead of four, has had a profound effect on my PSA results. I'm still feeling on top of the world , keep smiling and drinking the red wine.

Old Al

 

UPDATED

May 2011

 

 

 

October 13, 2009: PSA 751
October 20, 2009 : PSA 850.1: October 21 doubled Avodart from 0.5 to 1.0
November 11, 2009: PSA 531.9
December 1, 2009: PSA 391.8
December 29, 2009: PSA 467.8
January 19, 2010: PSA 510.7: Testosterone 0.8
February 9, 2010: PSA 550
March 3, 2010: PSA 536.6: Consultant pointed out that my PSA of 536 is only 10 more than this time last year, and thinks my body has found a way of stability , lets hope so.
March 23, 2010: PSA down again, now 411.5 ain't life wonderful
April 20, 2010: PSA down once more to 389.6: Having Zometa every four weeks instead of three weeks from now on
May 18, 2010: PSA up to 570: Zometa to go back to three weeks: to increase Dexamethasone to 2 from 1 ml
June 7, 2010: PSA 776: Dexamethasone now two and half ml
June 29, 2010: PSA 962: no pain , feeling fine
July 21, 2010: PSA 1,354: stopped Casodex 150mg: started 20mg statins
August 20, 2010: PSA 2,124 seems crazy, but I still feel really well
September 13, 2010: PSA 1,352
September 21, 2010: PSA 1,257
October 19, 2010: PSA 773: stopped statins due to muscle aches
November 16, 2010: PSA up bigtime now 1,400: still feel great, still swimming half a mile a day, and feeling fine. Will start back on Casodex 150mg as from today
December 14, 2010: PSA 3,198: yet went for a swim and still feel well
December 17, 2010: kidney/ bladder scans all ok, urine test good
January 4, 2011: PSA up to 3,708, yet no pain , feel well
January 10, 2011: PSA up to a staggering 5, 183 : have started to feel pain - correction: aches in my pelvis : have increased pain killers, 3 ibuprofen instead of 2, 5 paracetamol instead of 2, this is for pain management: stopped swimming for the time being: feeling well
January 25, 2011: PSA 4,900: pain under control, feeling fine
February15, 2011: PSA 8,582
March 8, 2011: PSA 8,187: now on Fentanyl patches 75 mcg: started swimming again, yet its heavy going
March 16, 2011: oncologist stopped Zoladex: Casodex 150mg Avodart: haemoglobin down to 9.3 advised to stop swimming: no mention of stopping the red wine: upped Dexamethasone from 2.5 ml to 7.5 ml: loss of weight over one stone [14 lbs/6.5 kg)
March20,2011: weight seems to have stabilised: now pain under control, everything seems to be better
March 29, 2011: PSA 8,180
April 5, 2011: pain returned with a vengeance: Fentanyl patches up to 100 mcg, yet pain will not subside
April 15, 2011: patches up to 150 + Oromorph every hour still the pain worsened
April 20,2011: sent to hospice things not looking very good,
April 21, 2011: had blood transfusion because haemoglobin down to 5.8, yet somehow had feelings of getting through this. Had a dream about a man who had his leg blasted off ,and still had immense pain in a leg that was no longer there; this gave me strength. Had words with doctors, they stopped all medication , but added methadone to help with the withdrawal of heroin. Only two hours later ALL PAIN disappeared, no more methadone.
April 27, 2011: left hospice, now take 8 paracetamol 2 Diclofenac 75mg, 3 Dexamethasone 2 mg each. Appetite on the way back feeling so much better
March 5, 2011: PSA down to 1,862: stopped Diclofenac reduced Dexamethasone to one tablet a day of 2mg: haemoglobin up to 9.9: now diagnosed with anaemia
May 16, 2011: Dexamethasone down to 1mg a day
May 17, 2011: PSA down to 402.7

 

 

UPDATED

November 2011

 

June 14, 2011 PSA down to 218.3 lowest PSA since December 2008: haemoglobin up to 10.3

June 27, 2011 PSA 227 haemoglobin 10.6 down to 4 paracetamol a day have more energy and feeling really well

July 5, 2011 PSA 245.9 haemoglobin 10.8 stopped paracetamol ( 4 a day ) started diclofenic ( 2 a day )

August 2, 2011 PSA 448.5 haemoglobin 11.4

August 18, 2011 ambulance called from Pilgrim Hospital, massive HEART ATTACK

August 19, 2011 transferred to GLENFIELD LEICESTER Next 24/48 hour critical Family gathered around my beside, heard Dr. saying bypass , no option. Held my Wife's hand, still holding it next morning have seemed to come through the worse now on 18 tablets a day Sent home

August 27, 2011 Feeling very weak, no more alcohol, Probably it was the DES 1MG to blame, so have stopped it immediately

August 28, 2011 still reeling from the after effects not sure where to go from here

September 12, 2011 started back on Casodex 50mg

September 13, 2011 started back on Zoladex still feeling weak

September 14, 2011 PSA 580 haemoglobin 11.6 now need to use a wheelchair, yet feel things can only get better

October 5, 2011 PSA 757.6 haemoglobin 10.8 feeling stronger by the day cancer specialist expects a downward turn for my PSA, cause only been back on it a little over 2 weeks, another test in three weeks

October 6, 2011 found myself in immense pain no pain killers working wife called ambulance taken to hospital high dose diamorphine followed by steroids

October 25, 2011 PSA 2092 haemoglobin 11.2 alk phos 105 feel so well still cannot comprehend my PSA no change of treatment till November 15, 2011 Had heart attack August , now November been told need a heart transplant, not a option due to my cancer, apart from some tiredness still feel fine

November 15, 2011 PSA down to 636 haemoglobin up to 11.5 feeling really well .

Al's e-mail address is: tallyho5455@yshoo.co.uk