Things are Progressing

In my last report I had just received my first PSA result over 1.03 (3.70) and had my water works pack in. On 20 November I had surgery to sort things out. This showed that my cancer had now spread to the outer sphincter and blocked off the urethra. I had a Supra-pubic catheter inserted in my bladder and given a night bag. I found the whole thing most uncomfortable and I was having regular bladder spasms and passing blood and urine through my penis. I therefore had to wear incontinence pads as well as bag connected to my catheter.
I had also been put on Androcur along with my Zoladex implant in case it might work. This increased all my ADT side affects and I had miserable couple of weeks before my scheduled heart procedure on 20 December. My daughter, her partner and big dog drove the 2,300Km from South Australia to look after me.
The procedure, a left atrium appendage occlusion, was supposed to reduce the chance of a stroke due to Atrial Fibrillation. The procedure went off without any problems apart from bladder spasms upsetting my 24 hour heart monitor. Each spasm meant that I had to grab my urine bag and my holter monitor and stagger of to the loo. Here I had to struggle to to arrange my hospital gown and incontinence pad and sit down. I had considerable pain with each spasm and generally passed blood and urine through my penis. Then it was back to bed by which time the automatic monitoring system had alerted the nurses who had to check the monitor leads and reset the monitor. After about the sixth time the Doctor gave me a strong sedative and pain killer and I slept for 10 hours.
I was home for Christmas which is also mt daughter's birthday and we had quiet celebration with old friends punctuated by bladder spasms.
Early in the new year I had the catheter replaced with a different design which immediately stopped the spasms but I still leaked blood from penis and I still required a pad. I also had a full series of blood tests for review on 15 January. My daughter and companions drove back home in 40C heat and I tried to get back to normal life.
I had been experiencing increased pain from my hips and lower back and my daily chores including walking my dog were taking longer to complete.
On Monday 14 January I had completed my pre-breakfast chores - remove and sterilize night bag, shower and cleanse catheter site, dress and make bed when I collapsed on the bed. I literally could not move. After a little while I was able to phone for the ambulance service. I have private medical cover and I was taken to the ER of my Urologist's hospital - bad move.
On admission I was diagnosed with a bladder infection, put on a drip and handed over to a Consultant Physician. My attempts to get them consult my urologist were ignored. In the end it wasn't until Thursday that she received my message when the shit hit the fan. My blood tests showed that PSA was 27 nearly 1,000% increase in 6 weeks and my hemoglobin had dropped to critically low levels. My heart specialist was also called in and a brief conference resolved that my cancer was spreading quickly and causing the drop in hemoglobin and subsequent lack of energy, my metastases were causing increased pain and I was too weak to return home to independent living.
I decided not to have chemo or any other treatment a decision supported by my Urologist and and Cardiologist and to set up a Palliative and Pain management plan. I remained in hospital a few more more days before my daughter drove back to take me home. To date there are no plans in place.
I see my GP next week and hope to bring a Medical Oncologist and a Palliative Care specialist on the team plus the government department who control home care services.
New scans will be arranged and blood tests taken to see how fast things are moving. All I know is that I am too weak to shower myself, drive or go outside except in a wheelchair.

Life Goes On

Since I started  phase 2 of my Androgen Deprivation Treatment things have have moved fairly quickly.  Helen flew up to visit me for a brief visit and she accompanied to see my oncologist for the six week PSA review to see if Casodex was working.

This the my latest report on Fred, my cancer, as posted on a Prostate Cancer forum:

"
Well it is now November 2018 and things have progressed.

In July my baby daughter, 56 this year, accompanied to see my urologist to review my latest PSA test. It was 0.98; my lowest ever was 0.3 and highest 1.03. My urologist saw this as a positive sign and I laughed out loud. My reading of published papers showed that the PSA test is very accurate but the readings can vary due to the patient's condition. My previous reading of 1.00 and the the new reading varied by only 2.0% which was insignificant which, in my opinion, showed that the Casodex had not worked. I was persuaded to give it three months.

I also complained about soreness in my right groin. It felt like the hernia I had fixed a few years back. I was sent for a CT scan with tracer of the lower abdomen which started a chain of events which highlights the differences in the medical profession.
After the scan I was called back as the "Doctor" wanted to have an ultrasound of the groin carried out. I, of course, went back to the radiologist and the ultrasound showed an enlarged lymph node which had shown up in CT scan. Incidentally the CT scan also showed that my hip mets extended right across my pelvis. I was advised to have a needle guided biopsy in a couple of days. This conflicted with my next appointment with my urologist so I phoned up to move the appointment. To my amazement I was told that the urologist had not authorized the ultrasound and did not support the new biopsy and I was to attend my next appointment. I was very upset and went to see my GP and friend of over 20 years to sort out what to do. He advised me to visit the urologist as the biopsy could be done later. Later I found out that he phoned both the urologist and radiologist to sort things out. The "Doctor" was a radiologist who failed to notify the urologist of the ultrasound but used the urologist's original authorization to conduct the test. My urologist took offense and started a flurry of communications.

I attended the follow up meeting with my urologist who didn't think that the biopsy was necessary as the lymph node was almost certainty cancerous. This with the dubious PSA result and, as I was still having blood in my urine which was still causing concern and as I was on blood thinners for Atrial Fibrillation , I was asked to consider stopping blood thinners taking aspirin instead.

I went to see my cardiologist who said it unlikely that aspirin would be any use but the use of aggressive blood thinners was not advised with bleeding tumors so an alternative treatment was advised. I am now off blood thinners as I await a Left Atrium Appendage Occlusion scheduled for December 20. I now have to worry about having a stroke as well.

This Monday, November 12, I got the results of my latest PSA. It was 3.7 a nearly quadrupling in three months. It has been decided to stop Casodex and take Androcur instead until after the heart procedure before reviewing follow on treatment n January. I have reached the Castration Resistance Phase of Prostate Cancer.

Overnight my waterworks packed in. I was having bladder spasms every 15 minutes before passing blood. It was extremely painful and at 3.30am Tuesday morning I called an ambulance. The Paramedic gave me a Penthrox inhaler to minimize the pain but I still had spasms and passed blood on the way to the ER. We pulled over to let me stand and use a travel john three times on the journey. The ER nurse measured my urine retention as over 750ml and tried to insert a catheter without success. The ER doctor used more force and succeeded. I ended lying in a puddle of blood and urine as my bladder emptied.

I was fitted with a leg bag and, after the ER doctor phoned my urologist to advise of this development, was picked up by a friend and was home by 10.00. I received a phone call from my urologist and given an appointment for Wednesday November 14. I am now scheduled for surgery on Tuesday November 20 where they will either carry out a TURP to clear the urethra blockage or insert a supra-pubic catheter and block off the bladder above the prostate. My tumor will continue to bleed. It has extended to the the outer sphincter muscle.

Now I am having spasms every hour or so and passing blood around the catheter which appears to be cause by pressure in the bowel.

I have typed this lying on a recliner chair which my most comfortable position during the day apologize for the numerous typos!"

Helen is going to fly up on Tuesday Morning ans will take me hospital at 2.00pm for the surgery. I will probably spend 3 nights in hospital.

Update For 2018 - Life Goes On

Towards  the end of 2017 Helen had driven her ancient Toyota Camry from South Australia with Ann, and Logie her dog to visit me as I recovered from surgery.  The car is nearly 30 years old and was loaded to the gills.  I was amazed that it got home again.  The round trip was 4.800 Km.

She wanted to make regular trips to visit so before Christmas I bought a 2016 Holden Trax mini SUV for her to use and tow my little camper trailer which I could no longer use.  In January she flew up to visit for three weeks and we both drove the Trax with the CT attached back to Adelaide.  The Trax towed the CT beautifully but after two nights camping, with Helen sleeping in the CT and me in my old large tent, we had had enough.  The temperature during the day was 40C plus and over 30C at night. I was two weak to drive and Helen was doing all the driving and setting up camp. We decided to stay in air conditioned cabins for the next two nights until we reached Helen ad Ann's house Charleston in the Adelaide hills.

The Trax and CT outside our cabin at Hay NSW

 

 

Their old house (150 years plus) is not set up for old men so I stayed at the hotel in the next little town, Woodside.  The hotel is over 100 years old and is not air conditioned.   I only stayed two nights before flying back to Queenslandto  my air conditioned home.  We did have a great lunch in the hotel's dining room with some of Helen and Anne' friends.

My huge room at Woodside Hotel

Back home Meals on Wheels needed a driver to help another volunteer to deliver meals so I am back to driving Kath two or three times a month..  I also got back into a routine of shopping, walking Louis and light housework,  I have cleaner to do the heavy stuff.

In April Helen and Anne plus Logie towed the CT back to Tewantin to visit for month.  They had had difficulty setting up the CT as they are both height challenged so they decided to give it back.  We put a roof rack and luggage basket on the Trax for the trip home.

The all had a great visit but Logie didn't take to swimming in the local creek.

Louis showed him the way

Helen gave him encouragement while Ann watched on.

 

As far as he go

Helen an Ann visited all the Op shops in Noosa while Logie waited at home.

When are the coming home?

We dined at the floating restaurant on the Noosa river

But soon it was time to go back to SA and away from the river.

Let''s go

No! not more bags

Full to the gills!

I will paste in my latest medical update to my Prostate cancer forum:

"I have just had my fourth Zoladex implant and this is a summary my progress since I posted my profile.
After three months my PSA had dropped to 0.5 from its previous 1.0. I was having occasional blood in my urine but was told this should settle down.
At six months my PSA was 0.4. I had begun to experience pain in my left hip and my right ankle was very sensitive to warm (in the shower) water. I was still having blood in my urine. I was told that things were "still holding on".
At seven months (May 2018) I had a stumble and jarred my left hip which caused me extreme pain. I was taken to the ER given morphine and x-rayed . There was no break but a bone scan was advised.
The bone scan showed that the metastases had grown. My GP referred me to a Radiation Oncologist. I was given five treatments of IMTR (Intensity-modulated radiotherapy)and I am now free of pain in my hip and can shower without wincing. It is a pity that they can't fix fatigue as easily.
Last week my PSA was reviewed. It was back at 1.0 and I was told that Zoledex had failed. I would now have Casodex added to Zoladex and my PSA checked in two months. I asked about Zytega ot Xtandi but was told that these required special approval on the Australian Pharmaceutical Benefits Scheme as they were Chemotherapy. I didn't think they were. I will wait to see how things progress and see my my Medical Oncologist who had advised me previously.
I now will have two month wait to see how I get on. At least Louis still gets his walks down by the creek .
Brian

This these are PBS requirement to receive Zytiga for $39.00 instead of $3,900.00
Castration resistant metastatic carcinoma of the prostate
Clinical criteria:
The treatment must be used in combination with a corticosteroid,
AND
The treatment must not be used in combination with chemotherapy,
AND
Patient must have failed treatment with docetaxel due to resistance or intolerance; OR
Patient must be unsuitable for docetaxel treatment on the basis of predicted intolerance to docetaxel,
AND
Patient must have a WHO performance status of 2 or less,
AND
Patient must not receive PBS-subsidised abiraterone if progressive disease develops while on abiraterone,
AND
Patient must not have received prior treatment with enzalutamide; OR
Patient must have developed intolerance to enzalutamide of a severity necessitating permanent treatment withdrawal."

This is all for now.

Brian

Where has 2017 gone - a belated update

My last blog update was back in February following my hot camping trip.  Apart from my usual tiredness caused by my AF I was feeling very well, cycling 3 or 4 days a week and delivering Meals on Wheels at least once a week.

For many years I have followed a groups of cycling journals posted on a web site known as Crazy Guy On A Bike (CGOAB).  These are journals of real hard core touring cyclists  some of  them around the world rides. A few months ago the CGOAB owner started a sister site, Bicycle Life, which caters for "normal cyclists" going about their normal life.  To make things interesting they have "Challenges" and I decided to take part in the annual Bicycle Life Challenge.  For seven weeks one must make seven rides,  purchase some item, record the ride in a journal.  They must provide documentary evidence of the purchase.  My Journal of this challenge is at Bike Life Challenge  It has many pictures of my home town.

During the challenge I attended the annual Bike Friday Muster in  the NSW Southern Highlands south of Sydney. On April 3 I drove down for three days and slept in my little camper trailer on the way.  My AF doesn't affect my driving and I covered between 400 to 550 km a day.

My first stop at Tenterfield

Second stop at Musselwellbrook

My home at Moss Vale for a few days

My bike was ready to go

The little bikes began to arrive

More and more of them

and more

over 120 of them

because my AF makes me slow I took short rides and got held up for 20 minutes by this train

The end

I did manage to get to lunch with the others in Bowral

for a beautiful carrot cake.  It was a 40KM ride

We had our farewell lunch in this pub

and home via Tamworth

and Warwick

It was a great break but towards the end I was having problems with my Prostate with blood in my urine. I saw GP who said my PSA was very low and probably my motoring and cycling plus the fact I was on blood thinners had caused a mild Prostate/Bladder inflammation.

On May 19 I joined my Camper Trailer group for a weekend camp at Landsborough about 80KM from Tewantin.

I just set my annex and camped next to Gary and Les who I have become friends with over the last three years

they are preparing for a long outback trip and perfected their bread making

Most of the time was spent talking and sitting around the campfire with a glass of wine 

I returned to my normal MOW and cycling life.  In June I had another PSA test and visited my Urologist for a check up.  She was very pleased with a PSA of under 1.0 but as surprised that I was still  having blood in my urine.  She set up a Cystoscopy in a couple of a weeks time.

In the mean time I went on a weekend camp with my cycling club to Kenilworth, 40KM from Tewantin.

I just set up the tent and used my refrigerator pod as the kitchen

on Saturday we went for a ride along the Mary River valley

This unusual for us as we don't see Autumn leaves very often in Queensland

Frankie came along for the ride

but prefers sleeping

back pass the Autumn Leaves

to visit some cows

Terry made a friend

to our "pop up" coffee stop

We only camped Friday and Saturday nights but it was a great getaway with dinner at the local pub both nights.

By now I had developed a bladder infection and my Cystoscopy  was delayed two weeks to July 12.
This procedure uses a flexible tube with a camera  to view the urethra, Prostate and bladder for abnormalities.  I could watch it on the screen.  My urologist commented on the normal urethra  but as the camera got to the Prostate she explained, "What's this?".  The camera showed a bloody mass blocking the Prostate entrance. She aborted the procedure and booked me in surgery in two weeks.  It would have been next day but my blood thinners require 10 days to leave the system.

 I was told that Fred, remember him?, had lied about the  PSA tests and he had spread out of the Prostate to the outer Sphincter muscles.  Surgery would either remove the Prostate and the cancerous urethra or just carry out biopsies on the new cancer.

On August 4 I had the surgery.  My Urologist saw me next morning and the next news wasn't good.  She couldn't remove the cancer without destroying the Sphincter and causing permanent incontinence.  I would remain in hospital until the biopsy results came back an in the mean time I would have CT scans, bone scans and an MRI.  To add to my problems I had a suspected heart attack which put me in Intensive Care for three days.  On August 8 I was cleared of heart problems but told that the cancer had metastasized and spread to my bones.  This is incurable and the only viable treatment  is ADT or hormone treatment which was started immediately. I went home next day.

First ten days were OK as I was on tablets.  After this I had a Zoladex hormone implant in my tummy.  In two days my life changed. I lost muscle tone became weak and even more tired.  I had ridden my bike  on several occasions since my hospitalization but for the next six weeks couldn't even look at it.  I had to cancel my big camping trip  a couple of weeks ago and I haven't the strength to deliver MOW.  Louis I getting used to short walks and even then I have to rest in the park halfway.

I have just had full blood tests and a PSA .  The blood tests were OK and my PSA had dropped from 0.94 to 0.30 which indicates the cancer spread is slowing down but I will need more scans to prove this.  Apparently, I should be feeling better in a few months as I adapt to having almost no Testosterone in my system.  In the mean time I will just get on with life.  

I now have Advanced Prostate Cancer with a Gleason Score of 5+4 =9.

First Blog Update for 2017

My last blog for 2016 ended with me returning home from my wet camping holiday.  While away I got very tired which I put down to my AF.

I was able to return to cycling in early November.  My first club ride was a disaster.  After 6Km I had to stop and rest.  I actually laid down in a school bus stop while the rest of the group went on and picked me up on their way back.  I did only 12Km and was exhausted.

During the week I made a couple of cycling shopping trips with difficulty.  My normal shopping trip is between 18 and 23Km and I normally fill a couple of large panniers with light  shopping.  It was too much.

My next two club rides were not fun which made me realize that something had to be done about it so I went to see my GP.  He checked my heart and general health.  I had recovered fully from my Prostate surgery and that wasn't the cause.  The 3/4 months brake from cycling would have reduced my fitness but not have caused the absolute fatigue I was feeling. I was having difficulty delivering MOW.

The only difference from before my surgery was that my Cardiologist had increased my AF medication just before my camping trip.  I was taking 100mg of Flecimide twice a day.  My GP was fairly certain that this was causing the problem and suggested I return to 50mg twice a day. In just a few days I was back to the state I detailed in the previous blog - not perfect but functioning and enjoying life with some limitations caused by the AF.

This is what I look like when going shopping

There was more good news in December when my PSA test results were very low <1.00 and my Urologist  said that Fred was dormant and I could go for another 6 months before my next test.

Louis and I spent Christmas with Joan and Bill but their little Dog, Scampi, was not present as he had died a few weeks earlier.  They had visited the RSPCA and other Dog Rescue Kennels and were told that they are too old to have another dog,  they are both about 80.  They were offered elderly dogs, 12 years and older, but Bill really wanted a dog he could take on long walks.

We had a good Christmas Day and a Boxing Day barbecue. 

Since  the New Year I have been able to  get back to cycling, delivering MOW,  walking Louis and looking after myself with out any problems as long as I stay within the limitations set by AF

In late January I joined a Camper Trailer group get together at Canungra near the Gold Coast.  It was a pleasant few days just lazing around and chatting with the other campers.  It was, however, hot and humid,  35 - 38C and 90%.  We were near a creek with a swimming hole and we would walk down there to cool off.

Where we were camping.

The grass was rather long for me to set up.

so it was mowed short by another camper

the swimming hole

the track from the campsite - the campers had whipper snipped the track for ease  of access

it was very steep and overgrown

my little set up - note the mowed track to the swimming hole

I could not resist posting this cooking photo - the Canungra butcher said this was an average Scotch Filler Steak - that's an eight inch fry pan!

The camp was from 26 to 30 Jan  and I had a couple of days to fill in before I was committed to deliver MOW so I stayed at my favourite camp ground in Esk for two nights.

Esk was really hot - 40C  and I spent a lot of time sitting and chatting with other campers around the swimming pool.   No cooking here, I went to the local pub and ate in preconditioned comfort.

Camping at Esk

I drove back to Tewantin on Thursday,  delivered MOW on Friday, put my bicycle in the boot of my car, and drove with my CT to Noosa North Shore to camp and ride with my cycling club.  It was a fun weekend but still very hot.

I picked Louis up from kennels on Tuesday morning.


Finally an example of house maintenance in Tewantin.

During a Termite inspection this damage was found in the garage.

They had got in from under the back patio slab

There is more by the window

Much more

Right down to the ground.

This where they got in

 

 

 

 

 

My local builder tricked down all the damage and repaired it

The house was completely treated with termite killer at a cost of $3,000 and the repairs cost $2,000.  Note I have always had regular inspections and preventative treatments but some obviously got in!


We have now had more than 30 days with temperatures reaching above 30C!