GREG'S LEGACY

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

Posts Tagged ‘Radiation 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.

 

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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

 

 

Radiation Treatment For Beginners Part II

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IMRTcSo!  I finally completed my course of External Beam Radiation treatment on the 21st December 2012. In my previous post “Radiation Therapy for Beginners part 1” published on the 9th November 2012 I outlined as much technical stuff as I could about the treatment. I also gave an early report on the beginning of the treatment. The following information will round out my experience with this treatment and give some insight into my side effects and how I dealt with them along the way.

The side effects I experienced and how I dealt with them are as follows:

I developed urinary issues with increasing pain and frequency. I eventually began medication with Flowmaxtra pills and Ural satchels. These managed to get me through the course OK and a month after completion I am off both medications. It is interesting to also note that I have not suffered any urinary incontinence since completing the treatment.

My bowel habits became odd fairly early in the treatment and have remained at odds since completion. I developed what I describe as a lazy bowel syndrome, neither diarrhea nor constipation. It is described by me as a many visits to the loo in the hours prior to lunch with not much in the way of deposit apart from small skinny stools. There were no diarrhea like pains just normal urges to go. I was unable to find anything to ease this situation but as it was more a nuisance issue I just put up with it.

I  developed consistent painful and stressful reflux and indigestion which threatened to be a real problem until I experienced a series of recurring dreams over three nights. I know this will sound weird but I swear it is the truth. For three nights in a row I had the same dream popping up more than once each evening and waking me each time. After the third night I gave in and did as the dream advised and that was to eat a raw garlic sandwich on white bread with butter????(Perhaps it was a prod from Greg. Who knows?) The reflux almost immediately eased back but I was to also change my diet from this point on. To give relief to those closest to me I dropped the garlic sandwiches after three days and started using probiotics to replace tummy flora and cut out red meat and increased my fruit uptake. (This sounds more like a prod from Greg.) The reflux has now almost disappeared with the occasional reaction due to poor food choices.

Garlic Sandwich Anyone

Garlic Sandwich Anyone

I experienced increasing bouts of nausea as the treatment went on. As I was treated on the Sunshine Coast there just happens to be a little town nearby called Yandina. Now situated in Yandina is a ginger factory that is a major tourist centre in this area.( Hooray) I happened to discover (through my wifes insistence) the friendly relationship between ginger and upset stomaches in the form of brewed ginger beer and what is called naked ginger pieces. I am so grateful for discovering the anti nausea properties of ginger and can recommend ginger to anyone having tummy problems. Ginger certainly helped me out with this one.

Fatigue was a huge side effect even apart from the fatigue caused by my ADT. As the treatment progressed fatigue grew in effect almost daily during the later stages. My only real options here were to walk for an hour in the early mornings when I had energy then nap as dictated by the fatigue during the day.

I have just received my latest PSA result since completing my treatment 0.04 ng/ml which is excellent, everything still on the level. My last PSA was taken in July 2012 and was 0.08 ng/ml. The Radiation Oncologist has advised he would like me to remain on ADT for at least the next 12 months and then reviewed. So I assume that apart from four monthly PSA tests and doctors reviews I will just get on with my life until either the wheels fall off somewhere or I end up celebrating my 90th birthday in 25 years time. I think I am actually in remission for the time being and I think Greg would be cheering.

Ginger is the King

Ginger is the King

Lee aka Popeye

Further Reading            Radiation Therapy For Beginners Part 1.

https://kingvalley.wordpress.com/2012/11/09/radiation-therapy-for-beginners-part-1/

Radiation Therapy for Beginners part 1

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IMRT MachineIn this post I would like to offer views on my experience with radiation treatment. I am currently at Nambour QLD, undergoing IMRT (Intensity Modulated Radiation Therapy) and what I have written here is part 1, as I have only completed week three of an 8 week course of therapy. Hopefully some time in the future I can complete part 2 when the treatment is finalised which should give a complete personal account to anyone who may be interested. To begin, I will offer the following technical stuff and will try to make it clear and simple, I will then attempt to describe my experience so far with the treatment.

Technical Stuff:

How does radiation therapy work?

Cancer cells grow and divide more rapidly than many of the normal cells around them. High doses of radiation can kill cells or keep them from growing and dividing, and it has proven to be particularly effective in killing cancer cells and shrinking tumors. Although some normal cells are affected by radiation, most normal cells recover more fully from the effects of radiation than do cancer cells.

What is IMRT (Intensity Modulated Radiation Therapy)?

IMRT involves varying (or modulating) the intensity of the radiation (in this case, X-rays), being used as therapy for cancer. It is a new form of radiation therapy that uses computer-generated images to plan and then deliver more tightly focused radiation beams to cancerous tumors than is possible with conventional radiotherapy. With this capability, clinicians can deliver a precise radiation dose that conforms to the shape of the tumor, while significantly reducing the amount of radiation to surrounding healthy tissues. Consequently, the technique can increase the rate of tumor control while significantly reducing adverse side effects.

IMRT is a more precise form of radiation. It allows physicians to escalate the radiation dose to cancer cells, and in some cases, even more precisely to specific metabolically active regions within a tumor, while keeping the dose to surrounding tissues as low as possible. An analogy might be painting with a paintbrush as compared to using an airbrush and masking tape to protect outlying areas. The airbrush allows you to deposit variable amounts of paint in a highly controlled fashion. IMRT does something similar with radiation.

What kind of radiation is used in IMRT?

Currently, photons (X-rays) are used to deliver IMRT. The radiation is generated by a machine called a medical linear accelerator. This machine stands approximately nine feet tall, is nearly 15 feet long and can be rotated around the patient with great precision. Operationally, microwave energy, similar to that used in satellite television transmission, is used to accelerate electrons to nearly the speed of light. As they reach maximum speed they collide with a tungsten target, which in turn releases photons, or X-rays.

Very small beams with varying intensities can be aimed at a tumor from various angles to attack the target in a complete three-dimensional manner. In fact, IMRT can be delivered with beams the size of 2.5 x 5-millimeter pixels-the size of a pencil tip-each with varying intensity. The idea is to deliver the lowest dose possible to the surrounding tissue, reducing the chance of causing a radiation side effect, while still delivering the maximum dose to the tumor.

Does radiation therapy expose people to radioactive substances?

Many people, when they hear the word “radiation,” think immediately of radioactive substances. However, no radioactive substances are involved in the creation of X-rays or electrons by a medical linear accelerator. When a linear accelerator is switched “on,” radiation is produced and aimed directly at cancer cells. Then, like a flashlight, when the machine is switched off, there is no more radiation-none is “stored” or “transported.”

Personal experienced stuff:

Pre-Planing and Preparation?

Prior to the commencement of my 8 week treatment I underwent a procedure to place three gold seeds within the prostate gland. These seeds are solid gold, about the size of a grain of rice and are now a permanent fixture in my pelvis. Small tattoos were also inscribed, one on each hip and one on the front of the pubic bone. The gold seeds and  tattoos are used in setting up the machine at each session to align the body and tumour so as to administer the dosage correctly. The gold seeds show up very nicely on X-Ray results which are taken prior to each session and the tattoos are used with laser light precision to align the body.

The procedure to insert the gold seeds is similar to a method of prostate biopsy used, where an ultra-sound probe is inserted in the rectum and the seeds are injected via needles through the bowel wall into the prostate. This technique performed without anaesthetic is not one of my most fondest memories of treatment I have received so far along my pathway.

What are the treatment sessions like?

Prior to every treatment you have to ensure you drink at least 600ml of water at least 30 minutes prior to treatment and your bowels should be clear.

Stripped to your undies shirt and gown and entering the room, your eyes are drawn to is this huge machine dominating the scenery. You lay down on a flat bench with your knees over a padded block and your feet inserted into a cushioned block. Assistants then position your body on the bench using the tattoos and laser lights to align you correctly. The neck and head of the machine hovers over you like some alien being. As a matter of fact one of my grandsons summed it up nicely after I explained it to him when he said ” Pop it sounds what being abducted by aliens would be like. ”

The machine takes some X-ray pictures to ensure it is aligned with the gold seeds then proceeds to rotate around your body stopping every so often to radiate the area for seven segments in total. I felt nothing from the radiation and the treatment session takes about 30 minutes in my case.

Abducted by Aliens

What are the side effects like?

After only 3 weeks of treatment it is early days for any serious side effects to be happening, however I can report the following stuff that is beginning to show. I will follow this issue up more fully in my next post toward the end of my treatment.

I am back to urinating several times throughout the evening and with much more urgency throughout the day. I find I am planning my daily trips around the Sunshine Coast with public toilet access in mind. I am starting to feel the pain while urinating (only mild at the moment) that was so familiar and debilitating when I first became ill and after the TURP procedure in May .

My bowel habits have changed considerably with several visits to the loo at the beginning of the day and several more spread throughout the day. It is not like diarrhoea, nor like constipation, but more a lazy bowel motion and is just a nuisance at the moment.

Fatigue is still a major problem for me, but at this time I cannot say for certain, if I am more fatigued than normal as I am still on ADT treatment. Generally I will have a couple of short naps throughout the day and still manage to get to sleep by 9pm or 9.30pm. I am experiencing reflux constantly which is a real nuisance and I will be mentioning it to the doctor today.

To counter my fatigue and other issues I have begun walking approx 6km daily through to the beach and then take a swim in the surf trying to give myself some aqua aerobic exercises for leg strength. I have altered my diet slightly using probiotics and fresh fruit and cut down on my consumtion of red meat.

End of part 1

Lee aka Popeye

Written by Lee

9 November 2012 at 6:00 am

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

When Plans Go Pear Shape

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Just Lee

Just Lee

Its a strange old voyage this with plans of treatments being made then remodelled on the run.

After my diagnosis three doctors and myself agreed that surgery was out of the question and that ADT medication followed by HDR brachytherapy and then external beam radiation would be the go. The HDR brachytherapy would begin on 29th May followed two weeks later by 5 weeks of external beam radiation but I was to attend clinics in Brisbane on the 2nd and 3rd May to finalise it all. No worries says I.

I attended the first clinic with the radiologist oncologist who was brilliant and gave me over an hour of discussion on how this all goes together. However the bottom line was my safety and unfortunately due to the urinary problems I had and the fact that the tumour was large and pressing on the walls of the colon, rectum, seminal vesicles and bladder the treatment could not begin and so the procedure set down for 29th May was cancelled.

This specialist also advised that the external beam radiation on its own could accomplish the same results as the combined HDR brachytherapy and external beam. The treatment would be 8 weeks and be half the cost of the HDR  brachytherapy?

The other specialist, a urologist oncologist, was pushed for time and our meeting was briefer, he agreed with the findings of the radiologist but suggested I consider having a TURP procedure to speed things up. He also reconfirmed his preferance to continue with the HDR brachytherapy when the size of the tumour allows. ( He had already sent me a bill on his costs for this procedure to be paid up front with a gap of $1900)

Fast forward now to today 8th May back in Mackay, I wandered into my urologists practice this morning to find my file on the receptionists desk. “Can you please drink a gallon of water and do a flow test for the doctor” she said. So off I go sloshing around until all at once I feel the need, get all set and then suddenly the bowels decided they needed voiding first, talk about embarrassing but I get it right the second time. Now my problem here is that I still have a gallon of water sloshing around and I am far from home (40 kilometers) I shot into one of the shopping centres and needed to go no less than 7 times in about as many minutes.  Warily I ventured back to the car and managed to make the city limits before I had to stop at the last pub out of town where I managed to have two successful attempts.  Back in the car I made it a further 15 kilometers before I had to pull into a servo and only just made it.  Back on the road I only just scrambled home in time and it was a further 8 more visits to the loo before things began to settle down.

Then I received a call from the doctors surgery, could I please come back to the surgery at 2pm for an appointment with the doctor, so back in I go. “Hullo” he says about 3.30pm” could you please sign these papers you are being admitted to hospital tomorrow (9th) for the TURP procedure and by the way can you get these blood tests and urine tests done today”. So I am off to hospital for three days having the re-bore done.

Without wishing to be critical I find it amusing that these doctors initially all agreed on what should be done, but none of them investigated deeper into the problems I was having nor the tumour size and the effect that it may have on the treatment at the time of diagnosis. The fact it took 2 months to work out that no-one had done a flow test is amazing. Still we are going forward so I will advise how it all went when I get back from hospital.

On a personal note I feel pretty shot, my symptoms due to the ADT continue to be extreme fatigue, low level fever symptoms and a flu like feeling. I am puffing and panting like an old steam train with the least exertion and feel like I have no oxygen. I need to sleep at the drop of a hat when my body demands it but usually only for between 10minutes to an hour and this can occur anywhere, sitting in a doctors room or at a coffee shop it doesn’t matter. I have also developed a cough that just hangs about and drives me mad. The doctor has advised that there are other ADT medications he can use and as I will be on them for the next couple of years, we have time to play (boy I can hardly wait)

Cheers for now

Lee aka Popeye

Written by Lee

8 May 2012 at 10:44 pm