Turning the number around for now....... - Advanced Prostate...

Advanced Prostate Cancer

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Turning the number around for now....and conversation on Lu-177...Sky King and Tiffy (daughter) leaving Duke Cancer

pilot52 profile image
16 Replies

My numbers doubled over six months from 2.5 to 4.98...just got back from Duke..my Axumin scan is clear and numbers have dipped to 4.23. Modest yes but I am holding my own...My OC found it interesting that I get up at 6 am and go til 9 or 10 with plenty of energy and feel great....Good diet, Peloton 3 to 4 days a week with high intensity, run with dog , paddle board and pickle ball, lift weights....still flying angel flights...I added the Peloton 5 months ago....She is involved in the Lu 177 trials which is in the 3rd phase of testing....she is impressed with the numbers and feels less than two years here in the USA and it will be here to stay.....Again she was happy my numbers made a turn around even though slight without changing therapies...Gleason 9, 2015 ...Blue Skies to all , Sky King and Penny (woof) forgot to mention cold beer!!!!

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pilot52 profile image
pilot52
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16 Replies
jdm3 profile image
jdm3

Looking good and glad to know you are feeling well. And, of course, glad you got your FAA medical straightened out and are back in the air. The Lu-177 is encouraging. Still a lot we don't know, but another treatment that has good outcomes for some.

All good here. Lots of flying in January and February, but slowed down in March with the annual and now laying low with the whole coronavirus thing. Flew yesterday for an hour. My own self-isolation therapy. 7,000 feet down the coast of Maine. Beautiful.

Stay well.🙏

pilot52 profile image
pilot52 in reply tojdm3

Great to be in the air and I feel really secure at small airports.....so fly and enjoy..Blue Skies

pilot52 profile image
pilot52 in reply tojdm3

My OC is in the trial....she stated that if you are not PMSA sensitive the Lu 177 is not effective....but at least it is coming and will help a lot of us....I now have to make the decision to go for my class 2 or stay in basic med...If my numbers change this year and they add another med not approved I am screwed again if on a class 2. I can always fly the Baron on Basic Med and even a M500....so I may just wait for a couple of blood draws and see how I am trending.......Glad you are flying and when you get down this way plan a stop in KOPN I live on a lake and you and your wife are welcome....Cheap fuel and I will always leave a light on....bring your court shoes I have a pickle ball court.....Blue Skies

jdm3 profile image
jdm3 in reply topilot52

Basic med works for me. I don't even want to wake the "special issuance" people at the FAA. I know there are others on this forum who are commercial pilots and got 1st class medicals back, but don't know the particular circumstances. I think at least one used the Mayo Clinic Aerospace Medicine group - AMEs, special issuance, etc...

We flew down your way twice this year already, but always with an agenda. Both times meetings and visits in Florida. We did stop at Jekyll Island for day. That was nice. Next time, I'm going to plan on a visit to KOPN and play some pickle ball (never played, but I used to play a lot of tennis and still move okay). Take care.

tallguy2 profile image
tallguy2

My father-in-law, Roger Keeney (Torrance, CA) was one of the nation's oldest pilots at age 96 when he lost his medical because he couldn't get in or out of his Piper Super Cub without assistance. He lived to age 100 1/2. May it be so with all of us!

in reply totallguy2

👏🏼

flyguy profile image
flyguy in reply totallguy2

Was Roger ever an instructor at ERAU/ Daytona Beach?

tallguy2 profile image
tallguy2 in reply toflyguy

No, he was a FBO at Torrance, CA. Never taught at ERAU. You will find an article about him in the AOPA Magazine if you search for his name or Acme Aircraft.

pilot52 profile image
pilot52 in reply totallguy2

I grew up around the Cub and we got one in 1967....It was a PA -18 ....loved it....Dad sold it because my older brother and I could not quit hijacking it at night....we thought no one ever noticed we were flying the wings off of it...we did not think Dad even knew what an hour meter was...he bought a V35 and that was the end of our air piracy !!! We just buried an aviator here in Macon two years ago.....flew b24's in the Army Air Corps and flew his King Air which was a piece of junk right up until he dropped at 94....drove a BMW convertible around and loved aviation .....Gen . Robert Lee Scott is from Macon also....met him a few times but did not really know him.....I would have loved to have met your father in law...I could talk aviation all day but I bore most people......Blue Skies

tallguy2 profile image
tallguy2 in reply topilot52

I regret never getting my pilots license. I spent a lot of time flying with my father-in-law in the Super Cub (I could see the instruments over his shoulder, which I'm not sure he ever figured out :). Also took trips to Mexico and various fly-in restaurants in his Cessna 180.

j-o-h-n profile image
j-o-h-n in reply totallguy2

KEENEY, Charles Roger - google search...... (1911-2011), legendary fascinating rogue pilot who often flew to various California Channel Islands.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 03/20/2020 7:47 PM DST

tallguy2 profile image
tallguy2 in reply toj-o-h-n

that's my father-in-law.

j-o-h-n profile image
j-o-h-n in reply totallguy2

I know... he looked like a cool guy...you were lucky to know him.....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 03/20/2020 10:22 PM DST

Positive message , thank you . ✈️

Patrick-Turner profile image
Patrick-Turner

Hi Pilot 52,

I had Psa 25 when I began Lu177 in Nov 2018. I had countless soft tissue and bone mets.

I had tried chemo which didn't work in 5 months before.

Anyway, PsMa scans I had all showed I'd do OK with Lu177, and after second shot in March 2019 the Psa came down a little bit, and a scan was inconclusive about progress. But I was cycling a lot of km at that time, and I did 960km during one 3 weekly period at that time.

I had no pains, although there was a little bone pain just after getting Lu177 which indicated it was working. No need for painkillers though.

I continued with Lu177, getting another 2 shots and doc also put me on Xtandi right after No 3 shot, because docs here thought that Xtandi makes PsMa expression higher so more Lu177 goes to mets so they are more effectively killed. There is a trial of this idea going on now in St Vincent's at Sydney.

Anyway, I got through 4 shots of Lu177, and no side effects except slight dry mouth sometimes, not always, and I've had no side effects from Xtandi.

Psa was 1.6 before follow-up scans last August, and no soft tissue mets could be seen, and bone mets were said to be healing, none getting any bigger. Biggest were pea sized in a femur and pelvis.

Since then, Psa went to 0.32 at Nov 2019, 12 months after starting Lu177, but 2 months ago Psa had risen to 1.3. Now the docs don't know why that's happening. CT scans over a month ago showed 2 active bone mets, small, one on L5, the lowest vertebra and another in a shoulder blade. Meanwhile I have got myself back into good condition and am cycling 200km+ a week, BMI 22, resting HR 48, waist < 95cm, and bike speed is good.

I see my onco in about a week, and have another Psa test. If Psa is about 5 which I expect,

I'll probably have another PsMa scan and maybe FDG scan, and I'll maybe have more Lu177, or whatever docs think will work, and that's all I can do now, just try to get best treatment here.

I live in Canberra in Australia and I got the Lu177 in Sydney and it cost aud $9,600 for each shot at Theranostics Australia at a Sydney clinic.

At the moment, the financial turmoil means our $ has gone to 55c US, so cost of Lu177 would now be usd $5,280. Trouble is that the air travel is costly, and maybe impossible now due to border closures. But when I got my Lu177 at Sydney there were 2 men from USA who had flown over for it.

I was diagnosed at age 62 in 2009, had a Gleason 9 with low Psa that was found to be inoperable when they tried an RP. I then had 2 years ADT with EBRT, but that didn't work, so continued on with ADT, and I am still on that. Xtandi may not now be working, since I began it last April. Before chemo I had Zytiga that worked for only 8 months. I have survived 10 years though, and currently have better fitness than most other 72yo who have had no trouble with PG and who have "full bottle" of testosterone. I have proved that a man does not need testosterone. Its nice to have it, because it would increase my av bike speed from 22kph to 25kph, but I find its been years no since any other cyclist over 65 has overtaken me on my rides around my town. When a young fellow of 50 goes past me, I can only ask "what took you so long ?" :-)

Covid19 is isolating ppl, but I've led a fairly isolated life without a wife since 1978, when she who lusted for travelling the world got fed up with settling down and vamoosed.

Its years since I have had a cold or flu, and if I got Covid19, I'd probably survive that OK because I have very good heart-lung health and no diabetes or other "co-morbibity" condition.

My doc giving Lu177 said a man in Germany had had 10 shots of Lu177, and in trial in Melbourne in 2016 at Peter Mac Hospital, one man got 7 shots, is still alive and OK.

Much research continues to on why some don't do so well with Lu177, and why Pca grows back later. But Melbourne research doc thinks a man who does do well with 4 shots of Lu177 like I did may well benefit from more shots later if Psa rises and PsMa scans show enough PsMa avidity.

When Lu177 works on bone mets, its a slow process; it goes to a bone met and begins killing Pca cells but that takes time and its its always difficult for the Lu177 to get close to all Pca cells in bone, and after a week or two, the Lu177 has lost its strength because it has a short half life. This has to be so, because a long half life can damage kidneys etc as the body expels the Lu177 as its not anchored to the bone met forever. So 4 shots did give me a good result, but I had to expect that some bone mets were not fully killed and that some bone mets or parts of them could re-grow again but this requires nw blood vessels so Lu177 could now get to where they could not go before.

Sometimes Pca mutates and old met sites become re-populated by Pca cells that don't have PsMa expression so more Lu177 would be useless. Docs have not yet found I have any such mutant cells, but they may well find some now, because my Pca is now well over 10 years old, and tumors nearly always mutate as they age. My Pca probably began in 2004, but Psa was low, and nothing is done until Psa goes over 5. Had I had PG examined in 2004, it would have been by biopsy only, MRI were not that good then. Biopsy still may have missed seeing Pca. But had I had an RP in 2004, it would have prevented a huge expense and worry about survival, I'd have full testosterone, so better health. An early as possible RP can avoid cutting all nerves wrapping around PG so a man does not have total ED or is incontinent. He does not need ADT. The ADT and RT that I did get has totally exterminated sex ability and any form of pleasure, but that was OK because I've been single for so long now, and females

have menopause, so there's no need for a working Rodger. I am fully continent, even though predictions were that before 10 years went by after RT, I'd be incontinent. So all things considered, I have had a very good QOL. I have cycled about 248,000km total now, so I have been to moon and am now cycling back, and if you see me while flying past, stop to give me a lift because I doubt I'll ever cycle back all the way to Earth.

Its a beautiful day here, there will be not too many at the local cafe for lunch, and I'll do a little ride of 25km, and all is well,

Patrick Turner.

j-o-h-n profile image
j-o-h-n

I guess my prior message got deleted.......... Keep flying.....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 03/20/2020 7:48 PM DST

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