THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2015 SO THERE IS NO UPDATE.

I had a radical prostatectomy in 1997 at age 57 following diagnosis of aggressive cancer (Gleason 8). As the cancer was outside the capsule I have had ongoing ADT (Androgen Deprivation Therapy) since.

During the past 5 years, my PSA has ranged from 0 to 7.0 and has been controlled by a single 3 month Zoladex implant which has had the effect of reducing my PSA to almost 0 at 6 months followed by creeping up to about 7.0 at the 12 month mark when a further implant has been administered. I have a new Urologist who says that this procedure is unusual, but if it works, why change it?

My only real problem now is that I am experiencing severe discomfort from recurring burning sensations all over my body including arms, legs, back, crotch etc. I have recently had both knees replaced, (6 weeks ago) and although I have recovered well from the surgery, my knees feel as though they are on fire.

My doctor feels that I might have some kind of nerve (neuropathy) problem which could result from long term ADT. He is treating my with Lyrica to control the discomfort, but I would really like to get to the bottom of the problem.

Has anyone out there experienced anything similar?

Anthony

BRIEF MEDICAL HISTORY:

In 1997 (aged 57) I was diagnosed with aggressive Prostate Cancer following routine PSA test. I had a Radical prostatectomy in June 1997. The cancer was outside the capsule and my PSA continued to rise so I was placed on an ADT regime for many years. Latterly for the past 5 years, one X 3 month Zoladex implant per annum lowers my PSA to near zero after 6 months and it then gets back to around 7 in another 6 months when the implant is repeated. Main side effects noticed have been weight gain, loss of muscle strength and reduction of energy. I received my last Zoladex implant 7 months ago.

A very recent test showed that my PSA level has gone down to 1.7 as it usually does at this stage of the cycle. This was a relief in view of the new nerve condition which has developed which is mentioned below. Looking back, I had 11 years of a relatively healthy life after my operation, except for the continual tests and side effects of ADT which I compensated for, with various vitamin supplements and by keeping involved and active in business and with my social life. (My wife has written a prostate cancer "enlightening" paper on the many different things we have tried and still follow, in order to keep on top of my medical predicament.)

July 2008 I had a total right knee replacement following an Arthroscopy in May 2008. I had continuing recovery problems including knee pain and numbness in foot.

December 2008 Arthroscopy to left knee and lateral release to Patella.

September 2009 I had a revision of right knee with Patella resurfacing and at the same time, a total replacement of the left knee including Patella resurfacing. In both operations I had epidural anaesthesia and after the last operation I had a problem firstly when the epidural had to be pulled out and adjusted, as it was only working on the one leg. I then received too much anaesthetic and when my blood pressure dropped right down, and I had no feeling in my upper chest, I had to be given an antidote.

I recovered quickly from these operations but the same pains in my right knee continued, and started in the left knee and the numbness in feet.

CURRENT PROBLEMS.

For the past 18 months I have experienced a slowly developing syndrome whereby I have recurring burning skin sensations similar to bad sunburn accompanied by ' hot flushes' to the face and head. My sinus area becomes blocked causing sniffing, my eyes burn and also crutch and buttock area. Most affected areas are my knees which have an acute burning sensation and increasing pain accompanied by a feeling that steel bands are being tightened around my knees. When the burning is worst, my lower legs down to my toes feel numb. Walking becomes very difficult. When my knees start to give pain, a burning attack usually follows which can last for hours.

I am fairly positive and tests have confirmed, that these feelings are not associated with the operative side of my knee replacements but are rather a nerve reaction that causes the discomfort. As partly mentioned above I also experience the burning in my arms and hands, back, lips, eyes, lower torso, buttocks and genitals. Although the burning has been intermittent until recently, it is now virtually permanent and more severe.

A year ago I visited Perth Neurologist Dr. L who carried out Nerve conductivity tests and has confirmed that I do not have Peripheral Neuropathy. She does however suggest ABNORMAL CENTRAL PAIN SENSITIZATION as a possible cause of my problem. She prescribed a course of Cymbalta, but after the first week, the symptoms were worse and were accompanied by other symptoms such as nausea, little appetite, frequent urination, headache and insomnia. Dr L advised me to cease taking Cymbalta. This was replaced with a trial course of Lyrica for 3 months, but that seemed to have little effect and I stopped taking it. The symptoms became worse when I stopped taking the Lyrica and I am considering taking it again.

Synonymous with the attacks of burning sensations I almost invariably experience discomfort in my sinuses, particularly to the left of my face. I experience heavy concentration of mucus on the back of my throat, particularly after sleep and my throat feels constricted.

My overall quality of life is deteriorating rapidly, and I now feel continuously unwell with constant severe discomfort, very little sleep and decreasing appetite. Two years ago I was a fit, active 68 year old and perhaps coincidentally all this began with the decision to have my knees replaced. If I had my time over again I would have happily suffered the knee pain until I could walk no longer rather than put up with what I am going through now. There are schools of thought that suggest that after years of ADT perhaps bone strength and density are such that it may not have been wise to undergo knee replacement. However surgeons are in business to operate to cure pain and perhaps there is not enough evidence for long term ADT treatment to be taken into account.

I have spent many hours on the Internet researching everything from anaesthetics to food or vitamin allergies as a cause but with no result. A few people have concurred with my feeling that possibly the epidurals might be the root cause of my problem. There seems to be little knowledge about nervous system diseases and the problem I have leaves my own doctor and various Professors and specialists baffled, and only able to experiment with various drugs, hoping that something will make a difference.

In recent times I have tried various alternative treatments, mostly with no improvement. I have tried electronic acupuncture with a Chinese doctor and hypnotism to no avail.

The pattern of my problem has changed regularly and often becomes worse with a new treatment. I have then been afraid to continue and have moved on. This has even happened with trials of different types of medications including Dothep recommended by yet another Neurologist Dr K . Following a further visit to him he conducted further nerve conductivity tests and has put me on a course of 20 mg Lovan (Fluoxetine Hydrochloride) 4 weeks later this has made no difference. After this he told me that he cannot help which was very disappointing.

It has been suggested by the regular medical community that I am suffering from some form of 'Abnormal central pain sensitization'. As far as I can understand, this is a malfunction of the central nervous system that attacks vulnerable sites in the body where there might have been recent trauma. It can also affect other parts of the body with pain and burning. I have noticed that my arthritic elbows and wrists become far more painful when I have an attack. Painkillers have little or no effect.

Recent CT & MRI to my lumbar spine show significant deterioration at L2/3 and L4/5 levels. I experience pain in my lower back and sitting or standing seems to exacerbate the pain in my knees Next month a new specialist anaesthetist will inject my lumbar spine with a combination of drugs to attempt to block the pain and hopefully assist the neurological problem.

I have a feeling that possibly my whole problem might have been caused by epidurals administered during the various procedures I have experienced, as the very first signs started after my second knee arthroscopy in December 2008.

I am now getting desperate to the point of fear of the future and am looking for some help beyond what I have experienced until now.

In a response to a reminder message, Anthony's wife Roz wrote:

My husband's history has not changed much. He apologises for not updating you.

He is still on hormone therapy and PSA; is up about 9 at present so time for another injection soon.

He is still battling with pain in lower back and knees (since knee replacements starting nearly 4 years ago).

He is still on Lyrica which helps to keep his burning neuropathy syndrome almost in check. Otherwise I think he would have it continually. He has had to up the dosage.

He is never out of pain and discomfort but refuses to take all the mind destroying drugs usually prescribed for pain and uses meditation and only Panadol to cope.

Finding it very difficult to exercise, as it disturbs the nervous system and the legs, back and all over burning, allergy type symptoms start up and last for hours at a time.

Still no solutions given from his GP, and urologist and he has given up looking for pain specialists after two unsuccessful spinal procedures which made the condition worse.

In spite of all this, he does what he can to lead a normal life and to keep cheerful. We try to joke and laugh whenever possible - and do special things.

Who knows where all this will take us. However, fortunately our personal relationship is still remarkably good!

My PCFA WA board duties and marketing activities keep me really busy. I still also work as a business broker, helping migrants to find good businesses.

Thank you for the wonderful work that you do on the YANA website.

My symtoms are worse than when I last reported and I seem to have an ongoing auto immune condition which attacks the muscles and joints and continues to keep me in pain and discomfort. I have had no diagnosis of this condition and remain on Lyrica which does help to control the burning sensations.

Meditation does help to temporarily relieve the symptoms, if practiced regularly.

My wife has spoken to several urologists about patients like me with advanced prostate cancer on Androgen Deprivation treatment for over 15 years. None so far have patients who have developed this particular condition.

Various pain and other Specialists tend to administer strong pain killers which do not help much and various drugs which so far have not helped at all. I am attempting to go for as long as possible without drugs but have to take Lyrica, which is the only drug that has a noticeable effect.

I am due for another PSA; test soon. The last one was encouraging.

Here we are again a couple of months later. I have just had another 3 month Zoladex implant after my PSA went to 16, but I seem to manage on one of these a year, so am probably lucky. After 6 months my PSA goes down to virtually Zero, and my libido goes with it. Oh well, at 73 I can't complain! Another 6 months and the PSA has climbed up again and I need another Zoladex. My Urologist, Rob Davies (brilliant!) says that my treatment is not the norm, but as I have been on this regime for eight years and probably gives me best quality of life, he says 'why change it?'

Rob just did some blood tests, and my blood calcium was high, so he initiated some more tests and established that I had Hyperparathyroidism. Last week I had 2 Parathyroid nodes removed from my throat. Unfortunately a very small Papillary Cancer was found and removed, but I am not too worried. The Surgeon says to wait another 3 months and then have an ultrasound to see if there is anything nasty still there. Quite easy to fix apparently, so after everything else I have gone through in the past 16 years, there is no point in worrying.

Just an idea for those who struggle some days, and feel a bit down without being really depressed. My Doc game me some 5 mg Dexamphetamine pills, and taking one when things are a bit tough gives me a real lift. 100 pills has lasted me more than a year, so I am not addicted, but my 'Happy pills' can really make a difference when I need them.

More later; watch this space!

Anthony's e-mail address is: rozb AT bigpond.net.au (replace "AT" with "@")

NOTE: Anthony has not updated his story for more than 15 months, so you may not receive any response from him.