Ahem...

If you have been wondering why the posts on this blog have 'thinned out' a little; I'll let you in on a secret ... I really don't like thinking about the fact that my future still remains uncertain. And ...

... after nearly 18 months of living with cancer, I'm tired!

Tired of all the side affects; tired of the 'shadow' hanging over me; and, just plain tired; especially since the worst of the side affects: 'Fatigue', still presents huge problems!

While I continue to try to remain optimistic (even while battling the ever-present depression), as well as trying to limit 'stress'; as this adds to my (new) cholesterol problem; I strive to maintain a healthy diet to minimise both weight gain (side affect of Hormone Therapy) and to reduce my cholesterol level in conjunction with a regular, active exercise regime.


A recent blood test (to investigate my high cholesterol readings) brought both good and bad news. The good: My PSA levels (about 6 weeks premature) showed a positive result!

A further dramatic decrease from 0.3ng/ml to 0.2ng/ml - a 33 1/3% decrease!

The bad news: My cholesterol remains very high in spite of a good healthy diet and vigorous exercise!!!


While the PSA level is very positive, the fact remains, that I need to maintain such results for another 4 years and 4 months before the doctors will be satisfied that the cancer is gone!

I have to bear in mind also, that the type of cancer I have is the most aggressive variety. And so even though my PSA readings would seem to indicate that all is well; there remains a possibility that the cancer is not gone.

Sorta ... "Every silver lining has a dark cloud"!

The Cholesterol ... well it looks like medication for this, until things (hopefully) improve naturally.


On another front, as I indicated in a recent post, it looks like I have Chronic Radiation Proctitis and am scheduled for a colonoscopy and follow up surgery in a few weeks time.

An update on the current side affects I'm tolerating includes:

Fatigue; Hot flushes; Cognitive Impairment (including short term memory loss); Muscle weakness; Depression; Erectile Dysfunction and the 'new boy on the block' ... arthritis!

That Time Again

Well the results are in again!

I received the results of my PSA level a several weeks ago, but have been too busy/pre-occupied to post them! I decided that it was time to post the results.


Firstly to recap; we were hoping for a PSA result that was very close to zero. Such a result would mean that I would continue the Zoladex implant for a further period - two to three years is recommended - without having to re-introduce the Androcur and associated side affects.

PSA level

The normal range of PSA (Prostate Specific Antigen) in an adult male aged 50-60 years, is 0 to 3.5ng/ml. Remember, I started this battle against cancer with a PSA of 84.8ng/ml just 13 months ago!!!

My previous test (August 2008) showed a level of 0.66ng/ml, a negligible amount of PSA and an excellent result! Well the result this time the result was even better!

My PSA was only 0.3ng/ml less than half the previous result!!

This is a huge 'shot in the arm' in regard to my quest for a complete cure!! These tests will be repeated in late February and I expect a similar result.

September Update

Changes:

• The fatigue continues but has eased somewhat. This is to be expected as the distance (in time) from the last implant increases. But of course, this means I'm getting closer to the next implant; and so the cycle continues.

• The hot flushes continue but with less frequency and duration. Shortness of breath continues and has eased somewhat - see point 1 above.

• Night urinations have decreased to 1 or 2 per night!!

• Sleeplessness is now almost a thing of the past! I sleep very well now - between ‘pit stops’

• Tiredness has also decreased – see point 1 above!

• Hair loss - chest, stomach, under the armpits - continues but is not a problem. Less shaving required now

• Cognitive Impairment continues to improve; largely because I am forcing my brain to remember even small details - the old adage applies here - use it or lose it!!

• Confusion only rarely becomes a problem, because of the above strategy.

• Memory loss has eased considerably - again because of the above strategy!

• My 'High protein' energy drink (a breakfast supplement) has been added again along with:

Propolis - a product of honey, which has proven results for empowering the immune system; Sage – improves memory; improved, well-balanced diet; and, a milk substitute with added calcium and vitamin D – to prevent bone thinning.


Unchanged:

• My attitude remains (mostly) positive!

• Bowel movements remain good.

• I have put on weight (all over) but it looks good - so I'm told. However I'm still trying to beat the 'bubble in the middle'!


I exercise (walk) most days to stave off bone thinning and muscle atrophy and have sufficient 'down days' to allow my body time to recover. I also get plenty of 'resistence training' (strengthening various muscle groups) by wrestling with my grandchildren!

I have had to ‘work’ at balancing these two; it was only when I considered just how much my body was damaged during the Radiation Therapy that I was able to fully understand the importance of maintaining this balance!

August Update

Changes:

• The fatigue continues and has worsened somewhat. This seems to occur every time I have a new Zoladex Implant (every three months). The first few weeks or so the side effects seem to be heightened.

• The hot flushes continue but with less frequency and duration. Shortness of breath continues and had worsened somewhat - see point 1 above.

• Night urinations have increased to 2 or 3 per night!! Might have to discontinue my last ‘cup of tea.’

• Sleeplessness is now almost a thing of the past! I sleep very well now (between ‘pit stops’)

• Tiredness has also increased – see point 1 above!

• Sensitivity of the skin IS a thing of the past.

• Hair loss - chest, stomach, under the armpits - continues but is not a problem. Less shaving required now!

• Breast (nipple) soreness and sensitivity are gone.

• Cognitive Impairment continues to improve; largely because I am forcing my brain to remember even small details - the old adage applies here - use it or lose it!!

• Confusion only rarely becomes a problem, because of the above strategy.

• Memory loss has eased considerably - again because of the above strategy!

• Berocca; my 'High protein' energy drink (a breakfast supplement) and Glucodin have all been suspended in favour of:

Propolis - a product of honey, which has proven results for empowering the immune system; Sage – improves memory; improved, well-balanced diet; and, a milk substitute with added calcium and vitamin D – to prevent bone thinning.


Unchanged:

• My attitude is increasingly positive!

• Bowel movements remain good.

• I have maintained a weight loss of 2.5kgs - still 6kgs to go!


While it is important to exercise sufficiently each day to stave off bone thinning and muscle atrophy; it is also important to allow your body sufficient rest each in regard to the Radiation Therapy!

I have had to ‘work’ at balancing these two; it was only when I considered just how much my body was damaged during the Radiation Therapy that I was able to fully understand the importance of maintaining this balance!

Results of Blood Test

Well the results are in!

I received the results of my PSA and Testosterone levels a couple of weeks ago, but have been too busy/pre-occupied to post them! Just this morning, I had a gentle nudge from my niece Kathy and decided that it was time to post the results.


Firstly to recap; we were hoping for a PSA result that was very close to zero. Such a result would mean that I could discontinue the anti-androgen (and therefore reduce the number of side affects) but still continue the Zoladex implant for a further period - two to three years is recommended.

The Testosterone level too, it was hoped, would be very close to zero. This would confirm that the Zoladex was suppressing the testosterone nicely and therefore starving any cancer that may still be present.


Testosterone

A 'normal' reading for adult males in regard to Testoterone is: 2.8 to 8.0ng/ml. For an adult FEMALE, the range is: 0.06 to 0.82ng/ml.

My result ... 0.51ng/ml!!

That means, I fit neatly into the 'normal' range for an adult female! Which explains a few things!! (Long term readers would be aware of the 'feminising affects of my meds).

But all is not lost, my result also puts me squarely in the range of a pre-pubescent male (7 to 12 years)!!

I've managed to turn back the clock!

Now before you scoff, such a proposition is not as fanciful as you might think - consider.

1) I no longer have any hair under my armpits!
2) My skin complexion is that of a pre-teen!
3) The hair ALL over my body (except on my head) is falling out!
4) The hair on my head is thickening and growing back!
5) My testicles are 'shrinking'!

I think you get the picture...


PSA level

The normal range of PSA (Prostate Specific Antigen) in an adult male aged 50-60 years, is 0 to 3.5ng/ml. Remember, I started this battle against cancer with a PSA of 84.8ng/ml just 11 months ago!!!

Well my test showed a level of 0.66ng/ml, a negligible amount of PSA and an excellent result!

Coupled together, these results are a 'shot in the arm' in regard to my quest for a complete cure!! These tests will be repeated in early November and I expect a similar result.

Changing Medication

Regular readers will be aware that my wife and I recently moved to Chile, South America. One consequence has been, that we have had to source out my medications, and their availability, here in in Chile.

Well, two things became apparent quickly, firstly the only med that wasn't readily available was Androcur (Cyproterone); and secondly, the price was going to be astronomical - given that: the price here, reflected the lack of ready availability; and, I no longer qualify for the PBS (Pharmaceutical Benefits Scheme) while I'm out of Australia; so importing the meds was out of the question.

This led to a series of emails and phone calls back to Australia to: Medicare (re my PBS status), our Oncologist (re: my options), and our Pharmacist. The upshot being that I was to switch to Casodex 50mg (Bicalutamide) which was readily available in Chile rather than sourcing Androcur (Cyproterone) from neighbouring Argentina!

This outcome however, led to futher discussions re my current progress - 3 months after completing the IMRT. It was decided that I should have my PSA levels tested, and if the result indicated: 'no detectable PSA', then I would immediately stop the anti-androgen altogether!

And so today, I'm off to have both my PSA and Testosterone levels checked; I'm quietly confident that the results will be favourable! More to come next week...

For those of you who are not familiar with Casodex I have sourced out the following slide presentations; available for download from ... here.


Slide Presentation 1: Are all Anti-androgens the same?

Slide Presentation 2: The Efficacy of Casodex (Bicalutamide) 50mg in Combination Therapy


Decision Making

Management algorithms are often used to help to clarify the different options for each stage of diagnosis, disease staging and management of prostate cancer. An example of such an algorithm is shown below.

May Update

I thought it was time, once again, that I offered the following update. I can now report the following changes.


Negative:

• The fatigue continues ... but is somewhat worse because of the Radiation Therapy combined with the complete androgen blockade (Hormone Treatment) and the fact that I am now back at work.
• The hot flushes continue.
• Shortness of breath continues and is slightly worse (as in point 1 above).


• Night urinations have increased to 5 or 6 per night!!


• Sleeplessness has increased as a result of the above!


• Tiredness has also increased because of the above!
• Sensitive skin - under the armpits - due to Hormone Treatment.


• Hair loss - chest, stomach, under the armpits - due to Hormone Treatment!!


• Breast (nipple) sore and very sensitive.
• Cognitive Impairment has improved, largely because I am forcing my brain to remember even small details - the old addage applies here - use it or lose it!!
• Confusion has lessened partly because of the above strategy.
• Memory loss has eased - again because of the above strategy!

Positive:

• No side effecs from the Radiation Treatment - apart form fatigue!
• My attitude remains positive!
• Bowel movements remain good - no bleeding, constipation or gastric.
• I am tolerating the Radiation Treatment exceptionally well!
• I have maintained a weight loss of 2.5 kgs!


• I have just begun treatment to stop the growth of breasts! Already, I have 'breast buds' growing under my nipples. This treatment (given concurrently with the that affecting my prostate) consists of 3 x doses of radiation (NOT IMRT) to both breast areas.

Now apart from the above, I can also report success with the use of a number of products that have helped to increase my strength and well-being.

• I have successly tried Berocca - available without a prescription.

I have noticed some general improvement in strength levels as a result. Berocca aids in releasing the maximum amount of energy available from the food you eat. Therefore it is very important to follow a well balanced and nutritious diet.

• I have also been taking a commercially available 'high protein' energy drink as a breakfast supplement.

This I have noticed considerably boosts my energy level for a good start to the day!

• I also chomp on 3 or more Glucodin tablets daily.

The addition of these products has not only given me more energy at times but has also resulted in an improved diet.

I should also add, that I have been careful NOT to overdo ... just because I was feeling a little more 'normal'. I use these products, more for an improved sense of well-being; rather than an aid to 'doing more'.

While it is important to exercise sufficiently each day to stave off bone thinning and muscle atrophy; it is also important to allow your body sufficient rest each in regard to the Radiation Therapy!

Whoops ... Where did everything GO!!

Just when I thought I was 'out of the woods' ... more medication and more side effects!

I started taking 'Anandron' (an anti-androgen) a few weeks ago in order to maximise the 'androgen deprivation' therapy I'm on - you can read more about this on: "My Journal".

Basically, this aids in depriving the prostate cancer of ANY testosterone; most of which (90-95%) is produced by the testicles but some (5-10%) is produced by the adrenal glands. While this treatment maximises the possibility of 'tumour shrinkage', it also introduces further (unwanted) side effects.

Added to the 'hot flushes', 'dizziness' and 'fatigue'; we (don't forget my long-suffering wife) now have to contend with ...

'Nausea', 'increased fatigue' and 'photo-sensitivity' (of the eyes)!

The increased fatigue is by far the worst (physical) side effect as this really knocks me around! The good news however, is that after 4 weeks on the Anandron (nearly there) the dosage drops back to just one; instead of two, tabs. The not-so-good news is that this coincides with the commencement of the radiation therapy; which has the effect of ... you guessed it ... increasing fatigue!

The nausea, is something that I'm gradually geting used to, but the 'photo-sensitivity' (PS) has only just ... 'reared its ugly head'!

I guess I can't grumble too much, as the PS only really affects me when driving of a night-time; which is now 'off limits'! The only other draw back, is when driving in bright light and then suddenly entering a tunnel or a low light area such as an undercover parking area.

Imagine my surprise just the other day, when I drove into an undercover (read low light) car park ... when I suddenly had to grind to a halt; as everything went ... BLACK!

A bit scary and more than a bit embarrassing!!

Well ... suffice to say that life has been a bit rough lately. Now, added to all of this ... my greatest challenge to date:

"I'm becoming a real sook"!!

If I'm not crying, I'm on the verge of crying! It is downright embarassing, not to mention unwelcome!

"What I wouldn't give for a good dose of testosterone right now ... wonder if there's a 'black market' for the stuff"!

Not only that, but I find myself, more often than I care to admit, avoiding people-contact; mostly because of the increased (emotional) 'stress' (now) involved.

This of course, makes it difficult to keep up with my busy and engaging social calendar! Oh the sacrifices, one is forced to make!

Life in the love nest is also under considerable strain (no testosterone ... limited libido ... the thought is there ... but) thank God for an understanding and (very) loving (and patient) wife!!

Well ... I asked for it!

After a lengthy discussion with my Radiation Oncologist, I finally arrived at the 'unmitigated truth'. Call me crazy, but I prefer to know the 'whole' truth; rather than be kept in the dark - regardless of my care-givers good intentions! At least when you are aware of your true condition, you can begin the process of preparing for the various steps needed to address each challenge as it presents.

To be honest I was more than a little 'peeved' by my previous medicos (plural) attempts to 'gild the lilly' [aka withholding necessary information / lying] ... as though I couldn't handle the truth. At best, this falls under the category of 'misplaced good intentions'! Worse however, it is patronising and condescending; worse still it disempowers the patient and robs them of their ability to make the best choice and denies the whole process of 'informed consent'!

The truth is ...

1. There remains some concern as to whether the LHRH implant (Zoladex) is as effective as could expected; as my PSA reading should have been closer to '0' by now. It is worth noting in this context, that LHRH implants only block the testosterone produced in the testes; and this accounts for approximately: 90-95%. I recently had a further blood test to determine my current PSA level and also my Testosterone levels. This will be an aid to determining whether the current LHRH is effective.


2. Because the PSA level has not declined at a faster rate, it has been decided to introduce an anti-agonist (Anandron ie Nilutamide) as well. Anti-agonists act to block the testosterone produced by the adrenal glands thus affecting a 100% blockade of testosterone in the body. This will continue for some time, concurrent with the LHRH Implant, and is known as Combined Androgen Blockade (CAB).


3. I have been scheduled for an outpatient procedure to be performed at one of Sydney's premier Hospitals, in which the Radiologist will insert three (24 carat) 'gold seeds' into the prostate. This procedure is performed under a general anaesthetic in a 'day procedure' in similar fashion to the TRUS. An ultrasound-guided instrument is positioned via the rectum to implant the gold seeds into carefully selected regions in the Prostate.


4. Following this, there will be a recovery period of 24 hours and then a 'planning week' in which the Radiotherapy treatment is discussed and mapped out carefully. This involves several scans, computer mapping and precise targetting. It is vital that this process is precise as the likely outcome otherwise would mean damage to healthy tissue and organs causing long term [unwanted] side effects.


5. I will most likely continue on the Hormone Treatment for at least 2 to 3 years. This then gives rise to the possibility of 'bone thinning' [oesteoporosis) and so I have commenced a daily regime of Calcium and Vitamin D supplements.


6. The Radiotherapy will consist of a precisely targetted (thanks to the gold seeds), high dosage of radiation being applied to the prostate. A lower dosage of radiation will also be applied to certain bones and organs within the pelvic region. During the process the patient is restrained using various devices to ensure that NO movement occurs that can adversely effect the outcome.


7. My original PSA [84.8] coupled with a very high Gleason Score [9] along with the results of the CT Scan, indicate that it is very likely that the cancer has metastisised to other organs or bones. This makes a 'cure' much less likely. It is hoped that if such metastises exist they are only microscopic and can be eliminated by selectively targetting the most likely 'culprits' with radiation as part of the overall IMRT procedure during the next 8 weeks. The best option moving forward seems to be ... to address the primary cancer and to review my recovery by way of ongoing PSA tests.


8. While the prognosis of 5 years is still 'on the table' it is impossible to predict - see below.

As the Radiologist pointed out: "we only get one shot at this and so we will plan to maximise our chances of a successful outcome".


Clinical prognostic factors

The most important clinical prognostic indicators of disease outcome in prostate cancer are pre-therapy PSA level and Gleason score.

Patients with localised prostate cancer who have pre-therapy PSA levels of less than 4ng/ml and pre-therapy Gleason scores of less than 4 have an excellent post-treatment prognosis, with a disease–free survival of greater than 90% following either radical prostatectomy or radiation therapy.

In contrast, patients with pre-therapy PSA levels of greater than 20ng/ml [mine was 84.8] and Gleason scores of more than 8 [mine is 9] have a poor prognosis (less than 50% disease-free survival).

Survival rates for patients diagnosed with a prostate cancer that has breached the prostatic capsule is poor and patients with metastatic disease have the lowest predicted survival rates of all. One estimate shows that, on average, 46% of patients with metastatic disease die about 22 months after diagnosis, and approximately 70% of all patients diagnosed with metastatic disease die within 5 years.

Well ... I asked for it!!

Finally some Answers

Today, I took myself off to the Radiologist's surgery; armed with a page full of questions - the same questions that the Urologist (Dr J) avoided (for the most part). The questions looked something like this:

• What if anything, can be done about the fatigue?
  


• Should I be concerned about the 'shortness of breath'?
  


• What about the dizziness?
  


• Should we consider addressing the cholesterol level at this time?
  


• What about the ... 'blood in the ejaculate'?
  


• What can I do about the 'hot flushes'?
  


• Um ... ah ... what about ... um ... 'breast tenderness'?
  


• Is the weight gain something to concern myself about at this time?
  


• And the blood in the ejaculate?

Well here are the answers - hot off the press!

• What if anything, can be done about the fatigue? Hopefully I will learn to tolerate this unwanted side effect otherwise medication can be used.
  


• Should I be concerned about the 'shortness of breath'? Worst case, this could point to 'heart related issues' but having 'pretty much' ruled that out, and since this side effect seems to be waning ... we'll press on.
  


• What about the dizziness? This can be caused by any number of things and will be monitored.
  


• Should we consider addressing the cholesterol level at this time? Yes.
  


• What about the ... 'blood in the ejaculate'? This is possibly the result of the 16 core samples taken during the TRUS, 3 and a half months ago, or is related the the tumour itself. Either way it doesn't affect the treatment under consideration.
  


• What can I do about the 'hot flushes'? Again, I should be able to tolerate these, particularly with winter around the corner! However, there are medications that can help with this also.
  


• Um ... ah ... what about ... um ... 'breast tenderness'? If this becomes too bothersome, we can 'zap it' with some radiation and 'VOILA' problem solved (fried?).
  


• Is the weight gain something to concern myself about at this time? It could be ... but we'll see how things go. Diet, exercise and perhaps some weight training offer the best outcomes. [Currently all the above apart from 'weight training' are in play!]
  


• And the blood in the ejaculate? This is to be expected, but again will not affect the proposed treatment.

Urologist Visit

Today, I took myself off to the Urologist's surgery; armed with a page full of questions. The questions looked something like this:

1. What if anything, can be done about the fatigue?
2. Should I be concerned about the 'shortness of breath'?
3. What about the dizziness?
4. Should we consider addressing the cholesterol level at this time?
5. What about the ... 'blood in the ejaculate'?
6. What can I do about the 'hot flushes'?
7. Um ... ah ... what about ... um ... 'breast tenderness'?
8. Is the weight gain something to concern myself about at this time?
9. And the blood in the ejaculate?
   
   

Well ... during the course of the consultation, the doctor managed to:

1. Answer some of the above.
2. Avoid some of the above ("I wouldn't worry about that").
3. Delegate the responsibility (to answer) the remaining questions to a colleague - "You can talk to the Radiation Oncologist about that.

Don't you just love it when doctors are able put your mind at ease!


Radiotherapy

The upshot of the visit was, that we now move into a new phase of treatment - 'Radiotherapy' (RT) as an adjunct to the Hormone Therapy (HT). The latter will most likely continue for approximately 18 to 24 months. However, there is a possiblity that I could be on HT for the remainder of my life; dependent upon the success of the radiation treatment.

[It has also been decided at this stage, to rule out surgery; because of the likely complications; both during and after the operation].

Radiation Therapy will entail daily radiation treatment, 5 days a week for approximately 6 weeks; (with Saturday and Sunday ... 'off for good behaviour').

Unfortunately this will also involve short stays in hospital for each subsequent treatment; thus further complicating my desire to lead as normal a life as possible e.g. juggling work committments, cancer therapies and home and social life etc.


LHRH Implant

Of course, the main purpose for my visit was to receive another injection of a luteinising hormone-releasing hormone (LHRH)- specifically a 'Goserelin acetate implant' (the generic name) or Zoladex (the product name).

Don't ask me why, but ... I asked to be able to inject myself on this occasion, not sure why now; but it seemed like a good idea at the time! Well according to witnesses (the doctor and my wife) I was a real 'pro' (professional).

The instructions were simple: "Grab a good fistful of excess skin ... (to the left of the 'belly button') ... and in one swift downward motion plunge the syringe into the abdomen right up to the hilt! Then depress the plunger and this will release the implant."

Well I must admit, in some strange way, I actually enjoyed the experience!

Perhaps it was because I was 'in control'; for the first time since the cancer was discovered. Perhaps it was the release of adrenalin, associated with the whole procedure; I'm not sure.

However, afterwards I do recall the doctor stating: "Very well done ... but ... I'm still charging you for the procedure, even though you administered the implant yourself"!

The success of this treatment (in my case Goserelin 10.8mg every 3 months) will continue to be be monitored by regular blood tests which look specifically at the Prostate Specific Antigen (PSA) readings.


Summary

In what follows, I'll attempt to summarise my position at this stage. I must add, that most of what follows has been determined by the research that I have undertaken on my own behalf.

While I have been priveliged to have the services of some very good professionals available to me throughout this ordeal; none of them (including my GP who is only new to me) has assumed the role of case manager and walked me through the necessary (often daunting) steps.

This I believe is often a serious flaw in the current treatment of cancer patients. Even though my Urologist has a clinical nurse assigned to liaise with his cancer patients, she has been unable to answer my questions, on at least 3 occasions and was away at a 'course' (yeah you guessed it - the course entitled 'How to Comfort Cancer patients') on the fourth occasion. Suffice to say: 'I wasn't all that comforted'!


As to life expectency:

We still have 3 to 5 years 'on the table', with the qualifier ... it could be a few years longer!

The PSA level is "coming down very nicely" but at 4.8 (normal being 0 to 3.5) and with a Gleason score or 9 (out of 10) there is still the possibility that the tumour has breached the boundaries of the capsule (Prostate Gland). If so, it is hoped that the Radiation Therapy (in combination with the HT) will effectively deal with such a breach.

NOTE: There is currently NO cure for Prostate Cancer once it has spread beyond the capsule. Current therapies can only 'buy some time'.


As to the side effects:

Hot flushes, Cholesterol, fatigue, shortness of breath and dizziness can all be managed by medication; according to my own research.

Weight gain is amenible to exercise, but some may be inevitable.

Blood in the ejaculate? To quote the Urologist: "We don't need to worry about that; it's quite common for blood to be still present in the semen at the 3 month mark. But that's something you can ask T... ('Dr. T' - Radiation Oncologist) about as well".

And finally, with regard to 'breast tenderness, a short zap with 'radiation' (while undergoing RT) can deal with this once and for all!