Re: Members' thoughts requested re Monday appointment

[Guest guest]

There are a list of questions to ask at http://www.malecare.com/new_page_44.htm which is the nonprofit New York based Prostate Cancer "charity" It is written by both doctors and patients. Cheers, Darryl

[Guest guest]

Sheena

I'm sorry that Ian is suffering the Zoledex side effects.

I would be willing to chat this through with you living in the UK . If you want to follow this up e-mail me at bryan.metcalf@....

In the meantime ask them about things to limit the side efects if he has to carry on or return to Zoledex - Venaflaxine can help hot flushes.

Terry's website will give you ideas on watching the cancer. Your GP could organise a monthly PSA. I would look to get a yearly set of scans (minimum).

I don't know what time your appointmwent is but if you get a chance to chat it through with the Prostate Cancer Charity helpline nurses - they start at 10am - it would be good

Best wishes

[Guest guest]

Sheena

Have you considered casodex monotherapy? The side-effects include breast

swelling and tenderness but these could be lessened by prior RT (or concurrent

dostinex as I recall reading). added casodex © to zoladex (Z) when his

PSA rose in order to reduce his testosterone (T) and took curcumin as an

alternative to RT so we've no direct experience of C alone. But with C as

monotherapy after Z I suppose you'd want to monitor the recovery of luteinising

hormone (LH) and T (which could take a while) as well as watch the PSA. I expect

you know there are different strengths of C (50mg and 150mg) to help control the

PSA ie block the uptake of the T that Ian would hope to regain in order to lose

some of the side effects of suppressing it (T). I believe guidelines have

changed so you may need to negotiate the use of C if there isn't yet any obvious

progression of his cancer (two consecutive rises in PSA). Monthly tests might be

advisable for a while to monitor that more closely. I hope you'll receive more

advice before Monday.

Best wishes to you both

On Fri, 10 Dec 2004 23:13:08 -0000 " Sheena Carmichael "

wrote:

Hi to all

My husband, Ian, was diagnosed with prostate cancer in Feb 2003 (aged

66). At that stage, his Gleason was 8 (4+4), his PSA was 45 and

rising rapidly, his stage was T3a (tumour out of the capsule), but he

had no visible bone mets or lymph node involvement. He was started

on Zoladex (3-monthly injections) immediately (with Casodex for the

first 3 weeks). Ian's PSA fell rapidly to 0.72 in May 2003, but then

began to rise again and was up to 1.10 by Dec 2003. In January this

year, he had 7 weeks of IMRT radiotherapy to the whole pelvis (70Gy

to the prostate and 60Gy to the pelvis) as part of a clinical trial

at the Royal Marsden (London) - he had very few side effects from

this. Since then, his PSA has fallen - as measured by the hospital

to 0.07 in July and through the local GP to 0.10 in October (this may

or may not be a rise). He is still on 3-monthly injections of

Zoladex. He has also been on Fosomax since August 2003 when his bone

density was shown to be too low. And he has been on Atorvastin for

high cholestoral for some years - not a surprise, his cholestoral has

gone up, though still just within acceptable limits.

We are due to go for our next appointment at the Royal Marsden on

Monday. Providing Ian's PSA is still down at very low levels, he

would like to come off Zoladex, changing to a monthly injection in

January maybe for 2 or 3 months before stopping. He is utterly fed

up with the side effects (hot flushes, lack of energy, flab etc.).

He does a fair amount of exercise (mainly gardening) and has lost

about a stone and a half (21 pounds) in the last year (deliberately),

so now only slightly overweight.

I would like advice on questions to ask at the meeting on Monday,

perhaps suggestions or people's views on alternatives to Zoladex

which do not have such difficult side effects, and (most importantly)

what sort of monitoring should he be looking for if he comes off

Zoladex (how frequent, which measurements).

Any help would be gratefully received.

With many thanks

Sheena Carmichael

(East Sussex, England)

[Guest guest]

Hi Sheena,

There are a number of approaches that you might consider.

1. Some would say that 12 months ADT following RT is insufficient, and ADT should be continued for longer - perhaps 18 months. There are others who would advocate 24 months. Stopping ADT sooner rather than later in order to regain some QoL is, I must admit, the sort of risk I was happy to take. It's a question of balance, but as none of us has a crystal ball, the whole exercise becomes a shot in the dark. Moving to the 28 day zoladex for a few months prior to stopping will give a faster recovery (although not necessarily a startling one) of testosterone (T) when you do stop. The QoL benefits will all come from regaining T. Do you know what Ian's T was prior to ADT? If it was "normal" then there is every chance it will recover to around the same level. If it was very low, then it is only likely to recover to that level, perhaps even down from where it was before.

2. Drop zoladex and use casodex at 50 or 150 mg per day. Casodex is a competitive antiandrogen - it competes with T for access to androgen receptors (ARs). As a result, some T does bind with the ARs, allowing muscle building to happen again, and mental acuity move back towards the norm. Hot flushes should diminish and go in time, but gynaecomastia - enlarging sore breasts - is likely to be the order of the day. These are caused by excess T being converted to estrogen which stimulates breast growth. RT (around 8 Gy or a little more (pronounced Gray)) to both breasts, providing this is done BEFORE moving to casodex monotherapy, may prevent this happening. Arimidex, an aromatase inhibitor, could be used to stop conversion of T to estrogen by aromatase. Tamoxifen, a selective antiestrogen, might also be used to block estrogen receptors in the breasts instead. A rising PSA on casodex monotherapy needs to be discussed with the docs, as the PCa may have decided to use the casodex as food.

Incidentally, Jackie Filshie, a consultant anaesthetist, has a BCa pain clinic at Sutton on Weds (I think), and she is practiced in the use of no-nonsense acupuncture. I was a PCa hot flush guinea pig a few years ago, and my flushes reduced in severity and frequency by 70% or so. I was a complete sceptic, but it worked. Oh, and it didn't hurt. I had a series of sessions with an increasing time interval between sessions. It doesn't work for everyone.

3. Come off ADT altogether for now, having decided what would trigger a return to ADT (a certain PSA level?.... a shortening PSA Doubling Time? (PSADT)). On a 28 day basis, I checked the following through my GP. PSA, T , and Lutenising Hormone (LH). LH rises in advance of T and is the signal to the testes to make T. Once T has recovered, a monthly PSA is probably all you will need. Checking Ian's Full Blood Count (FBC), and Biochemistry might be done 3 monthly or even 6 monthly depending on his progress and clinic appts. These tests, at these frequencies, could be used what ever option you plump for. The Auu clinic will probably suggest 3 monthly PSAs.

4. Use Diethylstilbestrol (DES), a synthetic estrogen. At 1 mg per day it is likely that T will remain suppressed, but there should be an improvement in muscle tone and mental acuity. You should consider adding a blood thinner to protect against a possible thromboembolic events. DES brings a cytotoxic element to the party as well, so it comes with a small bonus. Initially you would need to check that T remained castrate, and thereafter just check LH to see that it remained suppressed.

5. Estrogen patches. Getting blood serum estrogen up to 1000 pmol/L [1] should castrate T, and provide some muscle and mental acuity benefits without the worry of thromboembolic events. Patches avoid the first pass through the liver, so blood thinning needn't be an issue. I had a very brief discussion with one of the Sutton Auu docs about patches last week, and was more than a little surprised to hear him say that they use a "standard" dose, but don't monitor the blood serum level. That is really daft (assuming I heard him correctly), and if you go that route, clarification of what is monitored might be a good idea. Initially you would need to check that T remained castrate, and there after just check LH to see that it remained suppressed.

[1] J Urol. 2003 May;169(5):1735-7.

Transdermal estradiol therapy for advanced prostate cancer--forward to the past?Ockrim JL, Lalani EN, Laniado ME, SS, Abel PD.Department of Surgical Oncology, Faculty of Medicine, Imperial College, Hammersmith Hospitals NHS Trust, UK.PMID: 12686820

Good luck on Monday, and do let us know what you decide to do.

Best,

.

-----Original Message-----From: Sheena Carmichael Sent: Friday, December 10, 2004 11:13 PMTo: ProstateCancerSupport Subject: Members' thoughts requested re Monday appointment

Hi to allMy husband, Ian, was diagnosed with prostate cancer in Feb 2003 (aged 66). At that stage, his Gleason was 8 (4+4), his PSA was 45 and rising rapidly, his stage was T3a (tumour out of the capsule), but he had no visible bone mets or lymph node involvement. He was started on Zoladex (3-monthly injections) immediately (with Casodex for the first 3 weeks). Ian's PSA fell rapidly to 0.72 in May 2003, but then began to rise again and was up to 1.10 by Dec 2003. In January this year, he had 7 weeks of IMRT radiotherapy to the whole pelvis (70Gy to the prostate and 60Gy to the pelvis) as part of a clinical trial at the Royal Marsden (London) - he had very few side effects from this. Since then, his PSA has fallen - as measured by the hospital to 0.07 in July and through the local GP to 0.10 in October (this may or may not be a rise). He is still on 3-monthly injections of Zoladex. He has also been on Fosomax since August 2003 when his bone density was shown to be too low. And he has been on Atorvastin for high cholestoral for some years - not a surprise, his cholestoral has gone up, though still just within acceptable limits.We are due to go for our next appointment at the Royal Marsden on Monday. Providing Ian's PSA is still down at very low levels, he would like to come off Zoladex, changing to a monthly injection in January maybe for 2 or 3 months before stopping. He is utterly fed up with the side effects (hot flushes, lack of energy, flab etc.). He does a fair amount of exercise (mainly gardening) and has lost about a stone and a half (21 pounds) in the last year (deliberately), so now only slightly overweight. I would like advice on questions to ask at the meeting on Monday, perhaps suggestions or people's views on alternatives to Zoladex which do not have such difficult side effects, and (most importantly) what sort of monitoring should he be looking for if he comes off Zoladex (how frequent, which measurements). Any help would be gratefully received.With many thanksSheena Carmichael(East Sussex, England)