GREG'S LEGACY

Specialising in the human experience of Living with prostate cancer – warts and all

Posts Tagged ‘Androgen deprivation therapy

Christmas Greetings for 2015

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Seasons Greetings

Seasons Greetings

Hello again to anyone out there who still visits this site and my very heartfelt best wishes to the world in general. MERRY CHRISTMAS to everyone and my wishes for a HAPPY FESTIVE SEASON to all people regardless of religious persuasions. May the politicians and the people of the world find some sanity and peace in 2016. 

As I grow older I have come to embrace this time of year emotionally. I use this sense of time and place to slow right down and do a stock-take of past life events. I give thanks to the universe and or my creator for the people close to me and those that have sadly left me behind. I give thanks for my home, the area where I live and the peace that I enjoy here. I give thanks for the skill of the surgeons, doctors and nurses that have given me extra time and an improvement in my quality of life. I am constantly amazed at the diversity of skills and capacities of mankind that surrounds us. I give thanks for the love, respect, understanding  and respect of my wife, my companion and carer 

I have not contributed an article here since May this year and the reason has simply been that I had nothing to report, I am doing OK for the moment. I am not a doctor and lack certain mental understanding of things medical, to gather technical stuff together to present here on this site. Besides there is a ton of technical information available on cancer, treatments and drugs that are presented by others more qualified than I.

At the very beginning of my illness I went seeking articles on the human personal side of cancer diagnosis and treatment. I found this site established by Greg and eventually was able to contribute articles myself. Greg wrote about his illness, treatments, mental anguish, treatment discoveries, general ups and downs from week to week. He also unveiled his personal life, family history and his private philosophy on life in general. The information Greg presented is still relevant today for those seeking a personal perspective on the effects of chronic illness. Like Greg, I also tried to write on a personal level describing my personal experiences with dealing with this cancer,  however I did try to include other areas of interest that I thought might appeal to readers.

Together Greg and I have attempted to bring a personal touch to such subjects as:

Cancer diagnosis and grading….. Treatment and decision making…….Cancer screening and primary treatments…….Effects of surgery, Radiation, Androgen Deprivation Therapy, Chemotherapy….Other alternative treatments…. Advances in treatments and research… Cancer progression……. The carers role….End of life preparations…….Palliative and Hospice Care….Cancer statistics…… Depression, suicide and Euthanasia…….Personal experiences with treatments when a primary treatment goes wrong…..A personal view of the meaning of life, the creator or god.

Since my life saving surgery in November 2014 there has not been too much else happening in my cancer world. I remain in remission for the moment, although my last PSA results showed a small increase. This increase in PSA was not significant enough to draw a conclusion, so my doctor and I are awaiting my next PSA result due in a couple of weeks. The result from this will determine if my cancer is still active somewhere or if I remain in remission. If the cancer has begun to progress my only option in that case will be to return to ADT treatment and then continue to monitor the PSA with further treatment decisions to be made along the path.

Farewell until 2016

Farewell until 2016

So until things become clearer for me or change dramatically, or I find an interesting subject to report here for readers, I will bid every-one goodbye for now and hope to return sometime in 2016.

Cheers

Lee aka Popeye.

 

Latest Advances In Treatment Of Prostate Cancer And The Butterfly Effect

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The Blue Tiger

The Blue Tiger

The first blast of winter has reached my little tropical hideaway part of the world. There is a massive high pressure system south of the Great Australian Bight directing Antarctic winds right up the east coast of Australia. Night time temperatures have dropped below 10 degrees celsius with day time temps below 25 deg. It may not sound like a big deal to my southern neighbours but living in temperatures that average minimums of 25 deg to maximums of 35 degrees for nine months of the year it becomes a shock with the first winter blast in this part of the country.

At least the butterfly swarms are still passing by my verandah but I am guessing that this cold dry change will knock them back a bit for this year. Between March and May every year I can sit daily on my verandah and watch the procession of these beautiful creatures as they travel from the south in a northerly direction. I have even seen these swarms over the ocean 100 kilometers from land. Where they come from and where they are going I have no idea. They just happen here every year with the main type being the “blue tiger” but also many other species of all colours and sizes can be mixed with them.

Watching them the other day reminded me of an old metaphor called “The Butterfly Effect.” This was a theory exploring the concept of a small thing happening on one side of the planet (such as the flapping of a butterfly wing) can cause an immense reaction in one form or another on the other side of the world. It was part of a theory called the “Chaos Theory” and was generally attributed to calamities, however I believe in “Yin and Yan,” so the theory in my opinion should apply equally between good and bad.

One thing cancer has taught me, is to look at life more deeply and appreciate things in a more meaningful way, hence my fixation of my butterflies, their life cycle and the theory. Such a beautiful creature that evolves by unfolding itself from a lowly caterpillar after pupation. I like to believe the whole story offers hope that small actions can create massive changes for the good in this world. Mankind is still at the beginnings of meaningful good changes as witnessed by lifestyle differences. opportunities and other madness going on in the world; We are seriously out of balance. However the more developed countries involve themselves in the opportunity to continue to make advances in areas such as medical practices the more likely these advances will eventually filter throughout all the world. This then takes me to the subject I wish to offer readers in this article, regarding the advances made recently and where we are headed in the treatment of prostate cancer.

So how has treatment for prostate cancer advanced over the past number of years? Before I begin I should quote the following statistic for my readers. The prostate cancer 5-year survival rate has improved from 59% in 1986 to above 92% today, and likewise for most types of cancer the 5-year survival rate has increased. This increased survival rate is due to improved medical practices, the introduction of new drugs and/or the treatment methods and successful research outcomes.

In the case of prostate cancer, over 3300 men will die of this disease this year, even though it is still thought of as a slow-growing old mans disease. The truth is, that early low-grade prostate cancer is indeed slow to promulgate but there are high-grade aggressive varieties that are lethal, and indeed more younger men are now being diagnosed with this disease in their thirties and forties.

While PSA monitoring and DRE procedure have been the main indicators for biopsy; Research is searching for other prostate cancer markers to use, and several exciting pathological trials are underway. Medical imaging has also expanded, with much advances in imaging from MRI, CT and PET scans, along with ultrasound technologies. Much of this future researching and improvements should bring huge benefits in assisting doctors to discern at diagnosis, between the non lethal and lethal types of prostate cancers. This then, should have a great impact in decisions regarding primary treatment for the patient. Improved imaging should enhance the ability to locate and direct biopsies and also to better detect metastasis to bone and other tissues.

In the past few years there has been the introduction of new drugs such as Abiraterone Acetate (Zytiga) and Enzulutamide (Xtandi) which are advances in hormonal drugs offering greater survival rates, with less side effects. Sipuleucel T (Provenge) is an Immunotherapy drug and treatment, which stimulates the individual patients own immune system to attack cancer cells. Radium 233 (Xofigo) which is a radioactive type drug, used in the treatment of bone metastasis with prostate cancer.

Much research continues to search for and identify the different individual characteristics of prostate tumours. This may lead to drugs being available for specific types of tumours, and could lead to individual tailored drugs being used on a patient circumventing the need for current primary treatments of surgery and radiation. This could  have profound effects in preventing major life changing side effects.

AMEN

AMEN

There is much excitement and discoveries still to come in the medical world over the next decade, and I hope I am still alive to see much of it. Meanwhile I will keep admiring my butterflies for the hope they offer for a better world to come. Is it Possible?????? Perhaps.

 

Lee aka Popeye

 

 

Those Old Post Treatment Blues

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Also 23 types of PC

Also 23 types of PC

Well the songs are banging around in my brain like a bunch of old blues numbers creating an earworm. “Won’t you cry me a river,…….. cry me a river,……I cried a river over you” or “You must remember this, a kiss is still a kiss, a sigh is just a sigh,….The fundamental things apply,……….As time….. goes….. by.” Ah Play it again Sam.”

I had read about the mental anguish that can accompany a patient when nearly all primary treatment for prostate cancer is completed and life goes on. Seemingly, the only thing treatment wise, happening for the patient is a three monthly PSA test and more than likely a periodic injection for continuing ADT. However the lack of any major future medical goals provokes these blues attacks and for very understandable reasons.

It has taken me 12 months down the track to arrive at this point in my little journey. Now here I am all treated out, apart from continuing ADT and wondering where the hell I go from here. I have not seen my GP or Urologist for several months, I am in need of my next eligard injection which I fortunately have a script for (The last injection was given at the radiology clinic) and I am now back home released from the radiologists care. Where do I go from here ??

I have issues with my Urologist that I am not happy about and I was constantly thinking up excuses not to phone and make the appointment that I knew deep down I really should make. I feel like giving him a miss completely, but he is all my country town really has to offer a prostate cancer patient like me, as unfortunately the only other Urologist in town may have some issues with me. My last GP had fled from the area some 9 months ago but I do have a good option to see the doctor who owns the family practice. So into the GP I go and after a little chat he advises me to do the thing I really knew I had to do.

So there I was, three weeks later in the urologist waiting room clutching my 4week overdue eligard package. I had spent the previous couple of weeks worrying about the results of my PSA test and wondering if the numbers may have risen slightly. The question is always in the back of a prostate cancer patients mind, has the PSA gone up?? Has the cancer become castrate resistant and is on its merry way ??? There are no guarantees for any of the treatments in this game because given enough time all prostate cancer will progress despite ADT.

To a prostate cancer patient, life can seem to revolve around waiting outside a doctors door for the bad news you do not want to hear. You already know the cancer will get you in the end if you don’t die from something else first. However, onward you go, wishing for the good news every time the door opens and then back to managing your disease until the next time. Prior to this visit of mine to the Urologist I did consider shutting up shop completely, meaning no more ADT, no more Urologist, no more pathology and just get on with my life for as long as I could. To my mind this would be like walking away from the door and throwing off the chains of the side effects of the ADT drugs.

The flow chart

The flow chart

However, here I am and into his office I go…. Before I even sit down, he is reading the riot act to me about “I have a rule with all my cancer patients that they see me regularly and at least every three months in the worse case.” So I bent down, picked up my bag, turned and took a step toward the door. “What are you doing???” He asked. “…….I am leaving” I replied and then my wife and carer sprung into action to diffuse the situation . Nette let fly with news of our past 4 month stint and that we had kept his office up to date with progress, he on the other hand had sent us nothing. She then asked me to sit back down.

The rest of the session did not improve when I informed him that my wife and I were considering leaving private health insurance for financial reasons. This news was not received well from his side of the fence as he failed to conceive that a pensioner could not easily find $5000 per year for private health cover. His last word on the private health dilemma was to offer me the advice that I might consider having a subcapsular orchidectomy ( surgical castration ) to help out with future costs. I received my eligard injection and the good news that my PSA was still 0.04, he asked me to have a bone density test and PSA test and to make an appointment with his secretary for June.

I shook my head as I closed the door trying to work out how surgical castration may help or save me money in the long run. I am sitting here writing this post a week later and I am still pondering his suggestion and wondering what I will do with myself. Oh and by the way, I haven’t made the next appointment yet.

What goes around

What goes around

Lee aka Popeye

Progesterone Balances Testosterone

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***** This is a reblog of a post Greg published on 23.06.2012. In view of my latest article I thought I would publish this again to add further information for those interested in this subject.******

Lee aka Popeye

FACT: USP natural progesterone builds bone density (osteoporosis)

If you are or have been on Hormone Therapy (ADT). you WILL get osteoporosis – a chalking of the bones.  Eventually, you WILL have what they term “A Skeletal Event” usually a fracture of a hip bone.  I did.  If it does nothing else, Progesterone WILL prevent that happening. – Greg

My “quality of life” was stolen by the hormone therapy (Zoladex + Androcur).   I was one of those who reacted badly to ADT.

But, I got it back no thanks to my to my medical team.  Inside 2 days, Natural Progesterone Cream turned everything around giving me back my vitality and quality of life.

Dr. John Lee, M.D. (deceased),  the author of several books including What Your Doctor May Not Tell You About Menopause, has found that progesterone for men is one of the most effective treatments for prostate cancer. He had a series of patients who had metastatic prostate cancer who went into complete remission with natural progesterone. Progesterone appears to turn on the anti-cancer gene p53.

Progesterone is a hormone manufactured in the body from the steroid hormone pregnenolone. Progesterone is a precursor to most of the other steroid hormones, including cortisol, androstenedione, the estrogens and testosterone.

As a precursor, it looks for weaknesses in the hormone balance and converts into whatever is needed to bring the balance back.  Traditional ‘ PC hormone therapy’ or ADT tries to do the same by reducing the testosterone.  It does not consider the ‘hormone balance’ option.

Both men and women produce all of the sex hormones (testosterone, estrogen, HGH, progesterone, cortisol, etc,).  We just use them in different quantities and for different purposes.  As we get older and no longer need as much of any one of them, we slow down on the production and the balance is lost leading to many forms of ill health.  Men also become estrogen dominant and suffer the same problems that women have during menopause. Progesterone fixes that and is also actively involved in the building of bones.

Our doctors are generally unaware of progesterone to treat prostate cancer.  My doctors ignored my requests until they could offer no further options.  I had to get a prescription from a doctor and then have the 4% cream made by a blending pharmacist.  They certainly make it difficult to access, don’t they!  I use 1 cc or 1 gram (measured by supplied spoon) both morning and night.  that is the equivalent of around 80mg a day.

My GP was so amazed with the result, he has prescribed it to other PC patients.  He believes it is effective for any hormone related tumours.

If your quality of life is being effected by your ‘Gold Standard’ treatment, give it a go.  You will find out if it helps within a few days.

USP natural progesterone refers to the progesterone substance that is exactly the same hormone that is made by the human body. USP natural progesterone is not the same as the ‘progestins‘ that are synthetic versions of progesterone sold by the pharmaceutical companies.

Natural USP progesterone can provide many health benefits for both men and women (read our important article on natural progesterone for more information) , but only if it’s USP progesterone, the only type that’s bio-identical to the naturally occurring progesterone in your body.

I get my Natural Progesterone Cream 100g 4% from MJ Health & Beauty online.

Related Articles:

Greg’s Legacy Posts about Progesterone:

TESTOSTERONE Vs ESTROGEN WILL THE REAL CULPRIT PLEASE STAND UP

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We are nearly all the same

We are nearly all the same

My mentor Greg, some time last year had inadvertently stirred up an interest in me that began my latest quest, resulting in this particular post. Mind you, the search for information on this issue still goes on for me and the more I discover  the more “Holy Smoke what if”  moments I find.

Greg had written much and lectured me a great deal on the benefits of progesterone and in particular, his use of a daily application of progesterone cream. In Greg’s words “it was sensational and made such a great difference to his sense of wellbeing, Progesterone balances the hormones in the human body thus restoring metabolic function.”

Progesterone cream is only available on prescription here in Australia and is normally prescribed for menopausal women. I remember Greg telling me he was lucky that his GP would prescribe it for him being a male. So this is where my interest began that has resulted in the following article for consideration by anyone interested. I have included some links for further information at the end of this post and I can highly recommend the link for Dr John Lee and his booklet on hormone balance for men.

Men with advanced prostate cancer will understand the nuts and bolts of ADT (Androgen Deprivation Treatment) and the fact that ADT shuts down the production of testosterone in the testes to castration levels. This treatment is one of the three primary treatments offered men diagnosed with prostate cancer, the others being surgery, radiation or a combination of these.

At the current time medical opinion believes that the prostate cancer feeds off testosterone hence the use of ADT therapy to cut out the production of testosterone. Thus you can conclude that medical opinion believes that testosterone drives prostate cancer. Almost all men being treated with ADT will at some time find their prostate cancer becomes castrate resistant and will then continue to progress despite ADT.

Hormone balance for men

Hormone balance for men

Hormone balance in men and women is critical for optimum health and both men and women share three main hormones in differing quantities. Testosterone, (men)Progesterone, (the balancer) and Estrogen (female).  It has long been known that an excess or imbalance of estrogen can cause breast cancer in women, however consider the following argument in the case of prostate cancer.

Prostate cancer occurs mostly in older men with low levels of testosterone and low levels of progesterone. However estrogen levels in the form of estradiol rise and dominate in older men. The estrogen increases in the fat of overweight older men by the conversion of testosterone into the estrogens. Life style also contributes to the manufacture of estrogens in men by the overuse of alcohol, smoking, diet, pollution, the use of plastics for cooking and drinking and shift work (sleep disturbance patterns).

So are we on the right track in our fight against prostate cancer??????? There is a surprising  amount of studies and information available on the role of estrogen in prostate cancer and further research happening but you really have to go looking for it.

I'm alright Jack

I’m alright Jack

It appears to me that there is not much difference between men and women, just a different percentage of the same hormones. I think the Chinese hit the nail on the head with the concept of Yin and Yang. Same with the hormones, testosterone and estrogen, Yin and Yang and is progesterone the juggler???? And could it really be that estrogen might be the culprit in prostate cancer not testosterone????? perhaps we have been looking in all the wrong places!!

 

Lee aka Popeye

Further Reading

http://www.organicsilica.biz/research/8006.pdf ( *******Dr John Lee Booklet on Hormone Balance In Men Recommended reading )

http://www.ncbi.nlm.nih.gov/pubmed/19649507

http://www.ncbi.nlm.nih.gov/pubmed/19011298

http://www.ncbi.nlm.nih.gov/pubmed/17983895

http://www.ncbi.nlm.nih.gov/pubmed/18547385

http://health.howstuffworks.com/sexual-health/male-reproductive-system/testosterone-and-estrogen-balance-in-men.htm

http://esciencenews.com/articles/2008/05/27/estrogen.helps.drive.distinct.aggressive.form.prostate.cancer

http://www.oncoveterinaria.com.ar/contenidos/archivos/file/Julio/Role%20of%20estrogens%20in%20development%20of%20prostate%20cancer%5B1%5D..pdf

http://www.johnleemd.com/store/more_mens_hormones.html

Prostate Cancer Screening My Two Bobs Worth (20 cents worth for those born after 1966)

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The Quandry

The Quandry

The past two posts published on this site, discussed issues surrounding prostate cancer screening and treatment. Debate is still raging throughout the world with study results quoted and decisions made creating mayhem among patients, medical practitioners and supporting associations. It seemed timely for me to add my thoughts on these issues and offer my opinions for discussion to anyone interested.

In my mind I think the actual term of prostate cancer screening is misleading for Australians as it implies that the male population is under some national program to regulate screening for this cancer. Eg mammograms, breast screening etc. There is no national program, you will not receive a written invitation from the government.

Screening for prostate cancer as I see it applies to the use of the PSA blood test and DRE examination. Both of these procedures are available to all men at the invitation of the GP or the request of the patient to the GP and would be better termed  prostate function testing.

For better or worse the PSA and DRE procedures are the only common simplest testing available to men at this time. The PSA test comes in for heavy criticism on many fronts but is still the initial test that rings the alarm bell. So until research is able to find an improved substitute for these tests we should continue to use and improve the tools we have.

There are many forms of prostate cancer and each mans cancer is different. Some low and medium risk prostate cancers (Gleason grade 6 or 7) may never cause any health issues while some will turn aggressive and will be terminal. When low and medium risk prostate cancer has been diagnosed we have no way of determining if the cancer will remain indolent or will become aggressive. Improved research needs to be done in this area to find a way to better define the cancer that has been diagnosed.

Initial primary treatment for prostate cancer includes surgery, radiation, ADT drugs and/or a combination of these. Primary treatment can save your life or help manage the illness for those with aggressive prostate cancer. The price of this treatment can include either temporary or permanent side effects with urinary and bowel issues, including incontinence, erectile dysfunction, fatigue and a whole range of effects from the ADT treatment.

The considerable side effects of primary treatment for prostate cancer and the difficulty in determining between the prostate cancer that will kill you and the one that won’t is at the heart of the conundrum. Many men with low to medium risk cancer will elect to be treated who may not have needed primary treatment in the first instance.

There is another option for men diagnosed with low or medium risk cancer and that is with active surveillance over a period of time. In this case the patient and doctor will continue to monitor the PSA levels, conduct a DRE with follow up biopsies if needed on a regular basis. Further action could then be taken if and when indicated by a change in monitored results.

There are conflicting study results available that state there is no mortality benefit in screening (testing) and other study results that state there is a mortality benefit of 20%  with regular screening (testing). Regardless of the arguments from all sides, the fact remains that one Australian man will die every three hours from this disease! So with proper education and information every man should have the right to make his own decision regarding to get tested or not.

Capt Sparrow is befuddled

Capt Sparrow is befuddled

Memorial Sloan-Kettering Cancer Clinic operate a set of guidelines for prostate cancer screening that seems sensible to me and I re- produce it here as follows:

Our doctors recommend the following screening guidelines for men expected to live at least 10 years:

  1. Men aged 45 – 49 should have a baseline PSA test. If the PSA level is 3 ng / mL or higher, men should talk with their doctor about having a biopsy of the prostate. If the PSA level is between 1 and 3 ng / mL, men should see their doctor for another PSA test every 2 – 4 years. If the PSA level is less than 1 ng / mL, men should see their doctor for another PSA test at age 51 – 55.
  2. Men aged 50 – 59 should have their PSA level checked. If the PSA level is 3 ng / mL or higher, men should talk with their doctor about having a biopsy of the prostate. If the PSA level is between 1 and 3 ng / mL, men should see their doctor for another PSA test every 2 – 4 years. If the PSA level is less than 1 ng / mL, men should see their doctor for another PSA test at age 60.
  3. Men aged 60 – 70 should have their PSA checked. If the PSA level is 3 ng / mL or higher, men should talk with their doctor about having a biopsy of the prostate. If the PSA level is between 1 and 3 ng / mL, men should see their doctor for another PSA test every 2 – 4 years. If the PSA level is less than 1 ng / mL, no further screening is recommended.
  4. Men aged 71 – 75 should talk with their doctor about whether to have a PSA test. The decision whether to have a PSA test should be based on past PSA levels and health of the man.
  5. Prostate cancer screening is not recommended for men aged 76 or older.

A high PSA level does not generally mean that a man should have a prostate biopsy. A doctor will often repeat the PSA test after a few months to determine if it is still high and investigate whether there is a reason other than cancer that could explain why the PSA level is elevated.

This is one solution

This is one solution

In summary it will still be an enigma for a man diagnosed with low-risk Gleason 6 or medium risk Gleason 7 to choose his path. Does he run the gauntlet of risking possible side effects and choose a primary treatment. Or does he accept to play mind games for a while and choose to sit on the fence with active surveillance. That is the Question????? However it should be each mans right to supply his own answer and provide his own actions.

Here endeth my post

Regards

Lee aka Popeye

Further reading and reference

http://www.dailymail.co.uk/health/article-2163640/Dont-rush-prostate-operation–worst-thing-do.html#ixzz1yfps3qP4

http://www.bedfordresearch.org/images/blog/SH-Prostate-Cancer-PSA-Test-2012.pdf

http://www.uspreventiveservicestaskforce.org/prostatecancerscreening.htm

http://ses.library.usyd.edu.au/handle/2123/6835

http://www.mskcc.org/cancer-care/screening-guidelines/screening-guidelines-prostate

Lee’s side effects of hormone therapy ADT

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Drug side effect

Drug side effects

I began hormone therapy soon after my diagnosis of PCA. My urologist began what is called combined androgen blockade. This consists of a four monthly injected implant LHRH analog agent in my case Eligard. This mainly targets the pituary gland that signals the testes to produce testosterone and the implant prevents this occurring (chemical castration).

I also take a daily anti androgen tablet (Anandron) which targets the adrenal glands that also produce testosterone.

Most readers will be aware of the reasons for the hormone treatment in the management of cancer. In my case I have been advised I will most likely be on this medication for the next three years, post my radiation treatment. (You little beauty)

A search through the web will give you a heap of information regarding the different hormone treatments available and the drugs including the known side effects you can expect to experience. The web will also give you a heap of information in forums from men affected by this treatment. As each person is different in their responses to treatments and there are so many different forms of hormone treatment there is vastly different points of view in the side effects experienced by these men.

I am attempting here to give one example of the effects of a standard hormone treatment on one person, namely me. For the past four months I have been battling a huge change in my quality of life and would like to sum up here my experience. As you will see it is not a happy place to be in for the moment.

Drug side effects

Drug Side Effects

The side effects that I experience can be divided into catagories.

Sexual: Although some of my problems can be attributed to my cancer and TURP procedure, the loss of libido is most notable. I cannot remember the last time I have been sexually aroused and I hardly even think about it although I do apologise to my wife on a regular basis and give her big meaningful hugs.

Physical: Extreme fatigue for most of the time. I am reasonably OK while siting doing nothing, but the moment I become active I experience weakness in the legs with a loss of co-ordination. I have no strength and find it difficult to walk any distance faster than a shuffle. My wife has more strength to lift any articles that have any weight. After walking for 50 meters or any exertion to complete a task I am puffing and panting like an asthmatic.

I constantly wear a light jacket as I frequently become cold and have difficulty maintaining body temperature. This effect is real weird as I think of it as my hot flushes but in reverse as I get cold easily?? My muscle tone is disapearing and replaced by obvious flab and I have developed a nice set of 12 year old boobs. My hair and beard though have become nice and soft. My testicles and penis have shrunk significantly. I find it difficult to drive any distance as I become overwhelmed with the desire to fall asleep and in the case of any extended travel when I am not able to drive, I sleep in the passenger seat from one destination to the next, makes the trip go faster.

A real interesting side effect is a visual one. I have extreme trouble changing from a bright environment to a darker one. If I go from a bright sunlit view to indoors I am almost blind for a while, not being able to adjust to the light difference. This has led me in a couple of memorable times of seeing the blue sky as pink and a green sometimes blue patch of light in the centre of my vision until I can adjust and this may take several minutes. This side effect is a known one for the anandron medication, but it is still weird and worrying. I also have problems sleeping normally at night, often I am dead tired at 6pm only to be wide awake at 1am???? I also suffer stiffness and pain in and around the pelvic area, thighs and lower back.

Mental: I have diminished motivation. Things that used to inspire me I no longer care about. I used to look forward to activities like fishing, sailing, projects around the house etc but not anymore. I have trouble verbalising ideas or offering opinions. I have trouble focusing and decision making. I have difficulty prioritising tasks and my spelling and memory has gone out the window. I experience depressive moments and emotional instability from time to time.

Systemic: While not experiencing any problems at present time I have read where I am vunerable to ostioporosis and cardiac problems.

That just about wraps it up for me apart from the following: I recognise that I will be dealing with these side effects for some time and I am actively trying to sort out a better way for me to deal with them. I suspect most of these side effects are a result of the anandron medication, and I am doing some investigations to try and prove this. I am also forcing myself ( I repeat forcing myself ) to carry out a solid exercise program to try and turn these effects around. Hopefully I will be able to report on these results in a post further down the track.

Lee aka Popeye

Four Monthly Prostate Cancer Review Negatives and Positives

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Christmases past

Negativity takes over

I have just attended my urologists practice last friday afternoon on a scheduled review appointment and I was in a foul negative mood. My mood must have affected both my doctor and my wife as it was as if a dark cloud had descended on the meeting and I suddenly became a target for both of them.

It has been almost four months since my diagnosis and I am due for my next hormone implant injection come the 17th July. So with nothing better to offer as a post I decided to allow these two themes to guide me through and weigh up the negatives and the positives as they have happened to me over these past four months and throw them out there and see what comments I might stir up.

To be fair to my wife and urologist and to explain to everyone up front, I felt so bad after fridays meeting with my doctor that I emailed him an extended apology that evening and spent the next couple of days trying to make it up to my wife. To my urologists credit the apology was accepted without any problems and my dark mood on the day was mellowed by the doctors explanations to my problems and the ghost of Andy Ripley looking over my shoulder and whispering in my ear “Read my poem again you idiot.”

As a lead up into my dark mood on the friday I had spent the last eight weeks since my TURP procedure with  typical symptoms that had not fully resolved since the procedure. In fact I was collecting more symptoms along the way. The bleeding and purging of prostate material had continued and I was still experiencing pain on urination particularly throughout the daylight hours. I had developed stiffness and pain within the pelvic region and thighs. I had developed off and on chills and fever and an inability to stabilise my body temperature from time to time. My main ADT side affects of tiredness and heavy breathing were still with me. So I was getting a little worried. I had dark thoughts that these symptoms were possibly a result of the cancer extending itself subtly throughout.

As I began to unveil my diagnosis of my fears my doctor told me to drop anchor for a minute and presented me with the medical facts of my rotten position and the deepening symptoms I was experiencing. He explained with diagrams what he had done to the prostate during the TURP procedure and the fact that most of the tumour had been removed leaving behind an empty prostate sac that has two saggy edges near the bladder. My problem with pain and shut off while urinating throughout the day was because the bladder was not filling to acceptable levels and when trying to urinate the two edges of the prostate sac would flap together causing a shut down with associated pain. During the hours of darkness the bladder would fill sufficiently for the pressure to be such that this would not occur hence no pain throughout the evening. In time the remains of the prostate sac will shrivel and will not cause any problems. My other worsening symptoms are being caused by bacterial prostatitis which is being treated by ongoing antibiotics. He showed me in my pathology results with my urine samples that my leukocytes had risen from less than 10 to over 1000. This indicates a massive lot of crud still to be expelled from my urinary system.

My doctor then went on to advise that my latest PSA test was 0.01 so my prostate cancer at the moment wherever it happens to be within or without the remains of my prostate gland was not going anywhere for the moment. He reminded me that we have one shot at stopping this thing and it is with ADT combined with HDR Brachytherapy and External Beam Radiology. But I have to become symptom free before I start further treatment. At this stage it could be late August/September before we continue.

My other negative views which I have expressed in the past and did again at this meeting upset my doctor and my wife to the point where they were challenging my logic. I will explain these here as I said at the begining I would look at both the negatives and the positives according to my understanding.

Balancing the prospects

Proper Balance Needed

In the case for the negatives. I have almost reached the age of 65 years and have led a great life. No one lives for ever, we all have to head off this planet sometime. I don’t fear death but I do fear a long prolonged down hill slide to death. I do not wish to prolong this type of degredation for my family. So for me 65 is a pretty good innings, a lot of my friends and family were not so fortunate. So in good faith I am ready to declare my innings but not so my urologist and my good wife and I might add  bloody Andy Ripley.

For the positives and to be fair here it could be said (and was actually stated by the urologist) that from my initial diagnosis and cancer grading of gleason 9 that this prostate cancer had most likely started within me some 10 years or more before it became symptomatic. That would mean that with proper screening I could have been diagnosed with prostate cancer at the age of 54. Now if that had of happened through early screening I may not have been writing this post as this thing may have been nipped in the bud way back then when it was less agressive and easily cured. There was no way I would have been happy to leave this planet then. I was still a young and vibrant man of 54 with the world at my feet at the time.

The next positive I confronted was the ghost I uncovered in my last post and was really the reason I apologised to my urologist. I couldnt get the spirit of the poem written by Andy Ripley out of my head and it is worth repeating here.

Dare We Hope? We Dare

Can We Hope? We Can

Should We Hope? We Must.

We must, because to do otherwise is to waste the most

precious of gifts, given so freely by God to all of us.

So when we do die,it will be with hope and it will be

easy and our hearts will not be broken.

Andy Ripley 2007

So here I am feeling pretty ordinary. My life since late January this year has gone down the drain. My expectations of any real future are on hold. I now need a pad in my jocks to contain small accidents. It looks like any hope for a continuation of a satisfying sex life has long since gone out the window. How my wife really feels about this is really unknown to me although she has stated that it is not a real issue for her ( I am not sure how to really take that). My best mate and spouse for forty years now has to share, care and continue to love this poor old sod for better or for worse. A real positive for us is the fact that at the moment and for the past four months our relationship has expanded considerably. Being straight up with each other and being satisfied with a hug and holding hands is sustaining us through this time. I pray this will continue. My mental and physical abilities seem to have flown out the window in the case of ever being able to return to any previous work positions and responsibilities that I once took pride in. These abilities are now gone from my reach.

So here I am stuck with a bloody great spiritual poem, an inspirational story about a man who wrote it. A urologist who will not let go and refuses to concede defeat. This man is almost spiritually revered in my home town of Mackay and whose reputation is beyond repute. I am also stuck with a family including my wife who I know loves me and wants our life to continue together. My son does not want to lose me nor does my daughter. The grandkids mostly the young ones are not really sure what is going on. My special grandson Jesse who is seventeen is a different matter. His medical condition and history is a complete unknown story on its own to the world and a modern miracle that he has survived. He and I have a special bond and I am priviliged to have been his friend and mentor throughout a huge part of our lives together.

So, as from this day I have committed to a positive attitude for the next few months. I will turn up with a smile and a shes right mate attitude for the next few months. I will commit to the HDR Brachytherapy and External beam radiology when it is deemed that I am fit enough to endure the treatment. However I reserve the right to make new decisions after these events depending on how it all turns out.

Positives and negatives

Positives and Negatives

Regards

Lee aka Popeye

I must submit some popeye photos of me taken some years ago. Please remind me sometime?

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https://kingvalley.wordpress.com/2012/06/21/an-update-on-my-recovery-from-the-turp-procedure/

https://kingvalley.wordpress.com/2012/06/21/an-update-on-my-recovery-from-the-turp-procedure/