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Grant Martin and Sandra live in London, UK. He was 66 when he was diagnosed in January 2007. His initial PSA was 25.7 ng/ml, his Gleason Score was 4+3=7 and he was staged T3 N0 M1. His choice of treatment was Intermittent Hormone Therapy. Here is his story:

May 2002: PSA reading of 6.0 ng/ml. Doctor (lady) said not to worry; it needed to get up into the hundreds first if it was to be cancer. No suggestion of annual check-up, and naively I didn't check again until ....

Nov 2006: PSA 25.7 ng/ml

Jan 2007: Biopsy result Gleason 4+3, present in 10 out 11 cores. 2 cores appeared to show tumour had pushed outside the prostate

Feb 2007: Bone scan showed six metastases, 3 in lower spine, 2 in left hip bone and a rib. Started on Cyproterone Acetate

Mar 2007 (end of): MRI scan shows T3 N0 M1. PSA down to 5.3 ng/ml

May 2007 (end of): started on 3-month course of Zoladex + Cyproterone Acetate

I was diagnosed in Jan 2007 just as we were off for 4-week trip to Hong Kong and New Zealand.

I managed to get a bone scan a few days before we left. The urology registrar at Charing Cross Hospital in London rang me on my mobile (only switched on as an alarm clock!) at midnight in Hong Kong because the bone scan showed a few metastases. He urged me to start on antiandrogens as soon as we got to New Zealand. Long story about that, but the only one their health service had available was Cyproterone Acetate (well, there are only 4.2M people to fund their Health Service).

Back in UK Charing Cross wanted me to go on permanent Zoladex, despite probability of the cancer becoming hormone refractory within 2-3 years. Looked around the Internet to learn that intermittent hormone treatment (IHT) appears to have equal survival rates -- President Mitterrand apparently survived 14 years on this. Took a second opinion, to discover that recent European research shows that a 3-month MAB (maximum androgen blockade) course followed by a holiday has no worse survival rate than the 9-month course that was the current IHT practice.

How long will the PSA remain within bounds once the current treatment course stops?

UPDATED

September 2007

 

 

Closer reading of the research study, however, revealed that for metastatic cancers, the period on IHT would have to be up to nine months afer all, not the three I was hoping for. The slow fall in my PSA (apparently the bone mets are the main culprits) underlines this. Now I'm hoping that I can start a holiday from the treatment at Christmas 2007, and that I won't have to go back on HT until late in 2008.

I'll keep you posted.

 

UPDATED

January 2008

 

 

Consultant has confirmed PSA is low enough (at 1.91) to stop treatment for now. PSA is to be monitored monthly. Once it rises to the 10-15 range, then it's back on HT to bring it down again.

Keep your fingers crossed, guys, for a long holiday!

 

UPDATED

March 2009

 

 

After stopping treatment Jan 2008, my PSA started to rise quite rapidly --

Jan 1.41,

Feb 4.01,

Mar 8.94,

Apr 10.7.

I dreaded the thought of going back to Zoladex, particularly as libido had returned during this off-treatment period. So my oncologist suggested using a different regime -- three months on, three months off -- based on an antiandrogen (Flutamide) rather than the LHRH agonist Zoladex.

I started this mid April 2008, which brought the PSA back down to 3.44 by mid July, the end of the three-month on-period. PSA now rose even faster:

Aug 14.8,

Sept 21.2.

So I put myself back on Flutamide mid Sept, fully expecting that this brush with IHT was now over and it would be back to Zoladex. But my oncologist suggested we persevere, this time adding Avodart (Dutasteride) to Flutamide. PSA came down in the next three-month on-period:

Oct 4.77,

Nov 4.87,

Dec 4.71.

But within one month of stopping, my PSA was 19.8. So I accepted it was back to long-term LHRH agonists, this time Triptorelin, which my oncologist reckons has a slight edge over Zoladex (I’m taking cyproterone acetate in parallel).

Testosterone levels were restored during the year since there was no LHRH agonist to suppress it, and I put the increased PSA low points down to that. Although IHT had not given me the respite hoped for, it has been a good year, where my libido returned even though ED was not fully conquered.

I'd still recommend people try IHT; that it did not work too well for me is not to say that others won't get much longer periods off treatment, and such periods are to be treasured. After two years I still have no symptoms other than reduced urinary flow (which seems to respond inversely to my PSA level!).

For the record, I’m of the non-dairy, non-red-meat persuasion (which dropped 20lbs off straight away), and take 5,000IU of vitamin D3 daily. I am physically much fitter than I was two years ago (I work out in a gym and swim 3 times a week) and am hoping that this will counteract the lethargy that afflicted me when first I went on to Zoladex in 2007.

 

UPDATED

July 2010

 

 

Back on ADT (Triptorelin plus Cyproterone Acetate) from February 2009, PSA knocked around the 7-8 mark up until October 2009. Then I started to get muscle aches and pains in the upper left leg and thigh, plus my PSA started to rise -- a good reason to have PSA tested monthly. My wife got me to contact the hospital at the end of December, and after a new bone scan it was obvious that the problem was that the mets in my hip had started to flare. The muscle issues reflected that. A week's course of RT just on those mets (end January 2010) took away all the aches and pains, though it took a few months to restore strength to the muscles. PSA peaked at 13 in Feb 2010, but has fallen each month since then.

As well as a monthly PSA test, I also have liver functions tested. Interestingly, one test (ALP -- serum alkaline phosphatase level) can indicate bone mets, and this started to rise quite sharply from Sept 2009, which might have been an earlier clue to the problem had I been aware. [I have not seen a reference to SAP as Serum Alkaline Phosphatase is commonly known, but the PAP (Prostatic Acid Phosphatase) test seems to be similar. For more information go to the Site Search Engine and enter PAP .] However, the new bone scan shows no growth in the other four mets over three years, and there is some doubt as to whether these are all mets or not. Ever the optimist, I'm now hoping they are not!

 

UPDATED

December 2011

 

I'll wait until the New Year. I’m probably due some more RT, and I’d like to have survived the next treatment hurdle before updating.

Have a great Christmas

 

UPDATED

January 2012

 

PSA started to rise steadily after July 2010, and I was advised to stop Cyproterone Acetate in April 2011. After a couple of months, the withdrawal effect cut PSA by two-thirds! However, aches and pains in the legs started to return.

A bone scan in July 2011 showed a significant spread of bone mets. From just seven previously visible in the scan 18 months before, there were now dozens; in most of the spine, long leg bones, ribs and skull; most disappointing. I was put on Zometa in July 2011, which will continue monthly for a year, and then quarterly as a top-up, to try to strengthen the bones and help reduce bone pain. Although Zometa did seem to lessen pain (the left hip was the main source) it did not eliminate it, and I still had to take analgesics, though reduced from what I had been taking.

Unfortunately, leg pains suddenly took a turn for the worse at Christmas 2011, and I had to be admitted to hospital. An MRI showed that, although the spinal cord was not under pressure down its length, there was a problem at the point where nerves exit the lower lumbar to the legs. Whilst this might be due in part to metastases in those bones, the medics thought there was also general boney deteriation nothing to do with the cancer. But it was those trapped nerves that were creating the pains in the legs and making it hard other than to hobble around. In addition, the left femur head metastasis was the source of genuine bone pain, which meant that there were two problems, not one.

RT was given both to that and the bottom of the spine. The femur pain seems to have gone, but it is taking time to see whether the treatment will resolve the trapped nerve issue, or whether something else is required to give me back full use of my legs. Since I subscribe to the view that exercise is an important tool in keeping PCa at bay, legs are rather important to that! The trapped nerves led to a loss of muscle mass in the legs, and I've lost 10% of my already slim weight in the last six months.

I've been put on a low dose of steroid (dexamethasone) to add to the monthly Triptorelin and Zometa infusions.

Grant's e-mail address is: grantm@dfsoft.co.uk