Happy new year for 2019..... - Advanced Prostate...

Advanced Prostate Cancer

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Happy new year for 2019.....

Patrick-Turner profile image
16 Replies

Happy new year to all who post here to learn, to teach, or just share their Pca experience in common with others. There is a benefit in knowing how others have fared with Pca and for most here the fight goes on for years and without much certainty.

Always consider that what may seem hopeless may not be.

I would always hope that we all might get more of the the life we love by learning from from others.

Best Regards,

Patrick Turner.

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Patrick-Turner profile image
Patrick-Turner
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16 Replies
Hazard profile image
Hazard

Hi Patrick I always enjoy our conversations and mutual support. Keep cycling in 2019!

Patrick-Turner profile image
Patrick-Turner in reply toHazard

Hi Hazard,

Are you really hazardous? I find this is not the case, for sure. And I'll always look on the bright side of life while I am conscious.

I can imagine so many possible outcomes rushing at me, but if there is a nurse about me somewhere, I'll always be nicely distracted by her presence. I'll settle for the waitresses when I'm at a cafe and I ain't in a hospital. Every new year is a leap into the unknown, and I hope there's many more leaps to be made.

I might even marry my bicycle before a final leap ---- Woo Hoo...... :-)

Patrick Turner.

in reply toHazard

I bike in the Boston area, have an awesome Carbon frame that can break, but can be fixed. So aware, my life expectancy of survival when biking is much worse than my PCa.

But biking is so much more fun...

Happy New Year to all Warriors!

Patrick-Turner profile image
Patrick-Turner in reply to

Hi NYMets,

I see. Carbon Frame = Shorter life that riding cancer.

Look, I cycle around Caneberra sitting on Puff The Magic Prostate Grenade which is tryin to explode at any moment. But I am having doctors execute a unilateral pre-emptive atomic bomb strike over next 3 days on Puff, which hopefully might ruin his irritating terrorist habit of slowly exploding, and getting all his distant met agents to continue in regional uprisings.

I have a Cannondale Synapse, 2010 model carbon frame, and when Cannondale got in early with their frames they were called

"Cannonfail", there'd be a bang and front forks broke off, and this caused the Earth to rapidly rush upwards to your face, while breaking collar bones.

Bitten by the failures, they seemed to learn what to not do, and Cannondale team has now been entering Paris to Roubais race for years where there are many cobble stone sections over its 250km distance which has killed many cyclists' dreams of winning by frame failures etc, so their frames don't break now.

I never rode on an aluminium frame. These are renowned for metal fatigue disasters.

I still prefer the ride on my hand crafted steel frame using Reynolds 753R steel. Its only 0.8Kg heavier than a CF frame of same size.

But I have Brookes saddles on both bikes, and water bottles, and a long pump for flat tyres, and I am 83Kg at present, so weight is light enough without being unreliable and prone to breaks. In September - October 2017 I re-joined a Sunday ride group which rarely did less than 85km ( 53 miles) and many were 65 to 75, and at that time while on Zytiga + ADT I was able to ride faster than them all. They all had lighter bikes and some went up hill slightly quicker than me, a slow coach, but they could not stay on my wheel down hill and along flat roads. So I think I proved that you can be castrated for 6 years, and be taking a drug where 3 of 10 listed side effects are about heart troubles, and then ride faster than guys with a full bottle of testosterone. I'd get to the cafe break at 1/2 way before they did, and I'd have more steam in the last 20km.

Zytiga interferes with adrenal gland function which I guess controls HR to some extent. Looking back, risk of a heart attack may have existed, but usually other things predict it, and I didn't have those things, so I got away with fast cycling on Zytiga. But it did cause some dizzy spells this time last year when the temperature went over 30C, so I'd stop, take a drink H20, and it'd go away and I'd continue OK. I also had irregular HR, another side effect, and I found Zytiga side effects began 2 months after I began taking it, and ended 4 months after I stopped taking it so the HR was irregular for 2 months into chemo, but now I can cycle hard as I can up hill in 35C heat, no worries, and resting HR is 46 as I type to you now, and if I do a 90km ride, at midnight its gone down to 50, and during rides it only goes up to 120 up hill , and then comes straight down again after a descent.

Hearts usually show if they are likely to fail by looking at recovery times. Anyway, 3 months ago in middle of chemo I cycled to my heart doc who had me wired to record HR for 24 hours, and next day I cycled back, and there is a large hill on the way, so I was able to make a record of HR while going flat out in a real world situation, and doc later said he could not see I had any heart worries. But in 2015 I had a break off bike due to knees bothers, and I had a bout of fibrillation, which took weeks to stabilise. Not life threatening though.

In early 2017 I had a double TKR that also kept me off the bike for 10 weeks,

but once I got back on I was able to ride as fast as I had 4 years before, so the titaniun knees were like a re-birth. And right now I am back up to these speeds after quitting chemo 11 weeks ago.

I have no idea yet if Lu177 is actually working, but Psa after chemo went down to 25 just before No 1 Lu177, and 2 weeks ago it was 25, so maybe Psa is at least sort of stable, but the Pca needs maybe 4 Lu177 bombs to be able to suppress Pca progress for a long time.

I might get a dry mouth and dry eyes after the next Lu177, so I might have to put a water bottle on my back with a suck tube, and carry tear spray.

I'll work that out later. Best outcome could be that cycling keeps me so fit the Lu177 effects of saliva and tear glands are minimal.

Fact is that by the time most guys get Lu177, they are older, and / or have become completely sedentary and have many other health issues that tugs at their QOL.

I must pack my bag, and get going to catch a train, so I'll catch up later,

Patrick Turner.

dadeb profile image
dadeb in reply toPatrick-Turner

Best of wishes for the New Year. Great updates!

in reply toPatrick-Turner

Hi Patrick,

"I see. Carbon Frame = Shorter life that riding cancer."

Yes, we'll need to publish this in a medical journal somewhere, and add using "clipless pedals" will significantly reduce expectancy...

I'll never forget my "clipless pedals" cadet days, when stopping for a red light, forget I'm clipped and then flop over onto the pavement. The embarrassment was beyond belief, all to see from the intersection...

My bike, Cannondale Black, Inc Carbon 29er, it's cross country type, since hit the trails often. I've had "clipless pedals" episodes on the trail, at least no one in the woods to see..

Awesome, back on the bike and awaiting your Lu177 update.

P.S. why they call it "clipless pedals", when ones foot is clipped into the pedal...

Patrick-Turner profile image
Patrick-Turner in reply to

I used toe straps and Duigi shoes and plates until 2008 when such shoes were no longer made, and plates no longer available, and no more good pedals for straps. So I switched over to shimano clip pedals and when I bought them, the good guy at shop said I might fall off soon after I try them, and sure enough, half way down the driveway I found myself upside down staring at the sky and wheels in air.

But after that I was OK, until one day I rode to hospital to see doc after being put on Zytiga, and Psa has fallen to 2.0, and both he and I were very 'appy, and I was so 'appy I went out of hospital on cloud 9. But on the way out, I reached a T intersection a little too quick, and an old patient and wife cut the corner in their car, and I had to stop real fast,

and as they went past my front wheel with a foot clearance. I'd lost motion, and was still clipped in and so I fell off, and in doing so I stopped the fall by reaching out to approaching Earth with left hand, and I slapped the concrete real hard. I was OK after pushing Earth away a bit;

"don't come at me like that, you naughty Earth" and I gathered my wits, told 3 ppl walking past I was OK, and rode home, laughing about it. But at 7pm the hand began to ache and swell, so I drove to hospital emergency, they gave me an X-ray, and put a cast on, and I could not ride for a week; seems like I gave a wrist bone a micro fracture. So, when you get happy, just tell yourself "Now steady on old boy, don't let the euphoria go to your head".

I got back yesdi after Lu177 inject last Friday, and I feel very good today and will ride bike to cafe for lunch. The only immediate side effects were slight pain where I know there are some bone mets, and HR of 68 for 24 hours.

But today, no aches, and HR is back to my normal 46.

Psa was 25 before Lu177 No 1, then 25 after 5 weeks, then down to 21 after 6 weeks, so maybe its trending down now, so I will eat a happy sandwitch at lunch time.

BTW, the doc who saw me wore a nice bow tie, a positive and cautious fellow, and I mentioned the latest immune therapy and he was well aware of it but mean extra time is only 5 months so far.........

Some have huge good response, and some have no response, its a very unpredictable therapy.

Patrick Turner.

j-o-h-n profile image
j-o-h-n in reply toPatrick-Turner

to Patrick and NYMets;

Before my Pca I used to ride my wife....nice frame too....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 01/03/2019 4:53 PM EST

ctarleton profile image
ctarleton

Happy New Year!

Charles

Folks,

Had a recent discussion with the amazing warrior Patrick, he will be a away for a bit because of Lu177 treatment:

"I'll be absent for next 3 days while I get injected with minature Atomic Bombs in the form of radioactive Lutetium that gives off alpha particles to gatecrash the Pca parties going on all around my body."

All the best...

j-o-h-n profile image
j-o-h-n in reply to

to Patrick and NYMets;

Before my Pca I used to ride my wife....nice frame too....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 01/03/2019 4:53 PM EST

Spaceman210 profile image
Spaceman210

Thanks a lot and best 2019 to you as well!

Jeff

monte1111 profile image
monte1111

Patrick you never cease to amaze me. Also the other cyclists, weight lifters and all. My recumbent bike sits now, forlorn, in front of the fireplace with cats taking turns sitting on it. Got an amazing deal on Amazon.

j-o-h-n profile image
j-o-h-n in reply tomonte1111

Old bikes never die they just ride away...

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 01/03/2019 4:58 PM EST

Bunkerboy profile image
Bunkerboy

Happy New Year Patrick. Wish you all the best in 2019.

JimVanHorn profile image
JimVanHorn

Have a Happy New Year and thanks for all the information you have given me.

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