Provenge.....no side effects? How is ... - Advanced Prostate...

Advanced Prostate Cancer

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Provenge.....no side effects? How is that possible?

greatjohn profile image
71 Replies

I was just reading a post and all the replies....and it reminded me of a personal anecdote I want to share.

I had learned that my neighbor's brother-in-law had had prostate cancer and had only done radiation so far in his "journey". I asked him about it when we were alone and asked if he'd like to talk about it. He described the impotence, the pain...the constant peeing. He was not a happy camper....describing himself as broken.

Later, his wife had come out and she said... "we're just so happy my husband has been so lucky. He's had no side effects and everything works so great. We are blessed".

hmmm. What people will tell you in "confidence" is often not what they "advertise".

I didn't die from the Provenge treatments...but they were horrible. From the first insertion of the two LARGE needles and being strapped down in a chair for almost 3 hours unable to move. Just that alone felt like some kind of torture I wouldn't wish on my worst enemy. When the needles were removed and bandaged and I bounced out...the nurses said I had done GREAT, really better than almost anyone they ever had...as she tried to help me get up...and I danced away to the bathroom by myself. Two hours later I was in fetal position in my bed at home and slept (like in a coma) for 3 hours. This happened every time the blood was taken. I had two hours before it hit...where we would go out to a restaurant for my favorite food...but I knew I had to be home within the 2 hours.

On the days they did the infusion back into me...I got chills and they had to stop a couple of times and they kept warm blankets on me. I was shaking uncontrollably from these chills that they said were "life threatening". I left the place...came home and had a 3 hour coma-like sleep and felt better before bedtime. Was still a little "not myself" the next day, but okay.

All three "draws" and all three "infusions" were about the same....In my wildest dreams I, knowing what they are doing to my body and my metabolism, can NOT imagine someone having "NO" side effects.

I would describe them as "doable" because I knew it was just 3 of each and it was over. I would not say it was a "picnic". I know everyone is different, but I think more importantly...some people just have to be a "good little soldier" and not complain. I didn't complain, but I refuse to sugar coat the actual "feelings" I felt.

John

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71 Replies
EricE profile image
EricE

Thanks. I may be there one day and I'm glad you described it honestly.

greatjohn profile image
greatjohn in reply toEricE

yes Eric ...it's definitely "doable"...and especially knowing it's only 3 draws and 3 infusions! I was a happy camper when it was over! From what I am hearing ...the SOONER you do it...the better the results...so stay on top of it with your doctor. Results are what really matter!

John

YostConner profile image
YostConner

I’m really sorry you had that response to Provenge, John. Most men don’t, but all of us are different. I understand most men don’t have bad side effects from Xofigo, but I was sick throughout the six treatments. Hang in there. Your experience is useful for all of us.

greatjohn profile image
greatjohn in reply toYostConner

Yost..

I honestly can't imagine sitting strapped to a chair for 3 hours...not able to scratch your nose or face when it itches...or pee....NOT being enough of a bad "side effect" to keep someone from saying it has side effects. Other than that, you're having a foreign substance injected into you. Any healthy body would have to have a big reaction to that alone....and, I just researched and the Provenge page and it says that 71 % of patients have acute side effects. Mine were what I would call "normal" side effects. I could say that I have no side effects on Lupron and Xtandi, but I have never in my 62 years taken a 1 hour nap everyday and felt like I was in a coma.....until starting this. I am weak as water (But if I didn't admit it..no one would know from how I look and act) I'd like to see the people who say they "have no side effects"....over the course of their day after taking the infusion...maybe it was their custom to go home at 2 pm and pass out for 3 hours. Then it would appear to them that they had "no side effect". I've been and still are exceptionally active...so I notice "weakness"...& "lack of strength" perhaps more than "your average bear".

I felt like I handled the Provenge very well (ATC--"all things considered) . I just like to acknowledge that it was NOT a pic-a-nic. (two Yogi Bear references in this reply...LOL)

big hugs to you & hope all's going well with you. I've had 3 days in a row of feeling exceptionally good...almost "normal"...but I NOT resisting the 1 hour nap every afternoon around 2 pm..and I think that is helping!

John

p.s. Yost...have you had Provenge? Just curious.

Shooter1 profile image
Shooter1 in reply togreatjohn

Real ego buster. My PCP ordered Handicaped plate for me. Must admit, it's nice to be close to the door of the market after full grocery trip. If somebody without plate or placard isn't already in the slot...

greatjohn profile image
greatjohn in reply toShooter1

Wow, I asked about one and I got shot down. I always "look" full of energy and brimming with joy...EVEN when I'm exhausted and barely moving. But if someone makes the mistake of asking me how I feel ...LOL...I AM honest. Like a friend at the gym said...."I tell people I have had a stroke...even friends..." They don't care.

**on a serious note...do you have trouble walking? or are you short of breath? being closer can really help. So far, at the grocery store or any parking lot...I'll pick a spot at the entrance just to have a longer walk for the exercise.

**I get short of breath sometimes..but, weirdly, only if I am bending over...like doing gardening and also if I am talking on the phone on our walk around the neighborhood twice daily with the dog. It's about 3/4 mile. I always feel like I could keep going...but if I am talking on the phone...I do get winded.

best of luck!

John

ctarleton profile image
ctarleton in reply togreatjohn

The bending over exertion is really tough for me, too. I don't last long doing it.

Charles

monte1111 profile image
monte1111 in reply toctarleton

Bizarre. Bending over can leave me short of breath. Very bizarre to hear others are having this same issue. Maybe run this by doc on Tuesday. See if I get to add a new drug to my 2 shelf collection.

greatjohn profile image
greatjohn in reply tomonte1111

My doctor dismissed it... please let me know what your Dr says.

J

Shooter1 profile image
Shooter1 in reply togreatjohn

Feet don't work right after all my treatments. Takes two or three tries to get first foot into car and then lift assist second one. Even with exercise and PT, I still have very little strength in gluts and thighs. New normal can suck a little at times.

greatjohn profile image
greatjohn in reply toShooter1

Sending miraculous healing vibes your way!

& Big hugs,

John

monte1111 profile image
monte1111 in reply toShooter1

I need to quit reading this post. Keep finding people with issues that I have and did not realize were issues. No problem with 1st leg, but the two hand assist for second leg for a long, long time. Mine could be habit from back fracture/spinal compression. Will try to avoid the two hand assist. See what happens. Sorry about your new normal. This sucks a lot, all the time. Enjoy.

YostConner profile image
YostConner in reply togreatjohn

I did have Provenge, but I had a port in my chest, so I avoided the bit about being strapped down. That makes a big difference. I’m having radiation therapy to my skull this week. When they snap that mask over your head and leave the room, it’s quite an uncomfortable feeling (especially if you’re nauseous), but that’s less than five minutes!

greatjohn profile image
greatjohn in reply toYostConner

Thank god it's quick...hoping for good results for you!

pilot52 profile image
pilot52 in reply toYostConner

You can do it Yost....my friend ...This is my second cancer....my first was a HPV tumor on my tongue that my ENT missed for months....Went to MD Anderson...they made a polymer bite guard so I would not swallow my tongue....the ole mask was put on and buckled in and they said if I started to gag raise a leg it would take them 45 seconds to enter the room move the machine and get me out.....30 minuets of delight........We now have the joy of this challenge....I wish you good fortune in your own battle and lets hope science gets it right this year!!! Blue Skies Sky King

YostConner profile image
YostConner in reply topilot52

Thanks pilot. Best to you.

Break60 profile image
Break60 in reply togreatjohn

Did provenge work for you? Why did you choose it?

YostConner profile image
YostConner in reply toBreak60

It’s not possible to show Provenge worked in an individual, but I think it helped a lot. After that I went on Zytiga for 32 months. Again no proof, but I think there was some synergy there.

Break60 profile image
Break60 in reply toYostConner

Seriously? You see no diminution in mets

ctarleton profile image
ctarleton in reply toBreak60

In the clinical trials leading up to the US FDA approval of Provenge the primary endpoint of improved time to disease progression was not statistically met. (Note the difference between this and "diminution of mets). PSA values often don't fall dramatically, either. However, there was an approximately 4 month Overall Survival advantage, and on the basis of that, Provenge was approved.

fda.gov/biologicsbloodvacci...

fda.gov/downloads/biologics...

In recent years there have been Clinical Trials starting, trying to test a combination of Provenge with other agents, such as Ipilimumab (Yervoy).

"Individual results may vary". (See also the history of Todd Seals.)

Charles

Break60 profile image
Break60 in reply toctarleton

There’s gonna come a time when fda won’t approve expenditure for such minor results ; we are not as a country going to be able to afford it.

greatjohn profile image
greatjohn

damn...as much as I LOVE real Ivory keys (and I love elephants)...my piano has synthetic keys...the original have been replaced (the old grand I have is from 1886.) I saw this keyboard in a thrift store...and told them..that it's NOT legal for them to sell it..and they were shocked, but the authorities would rather see the ivory stripped off and burned than see it has an homage to the life (long ago) of a beautiful large animal. I think Ivory has to be from before 1910 in order to be "legal". But, alas, I'll go nibble on some Feta Cheese here at home as I keep my frig stocked with it! LOVE it!

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

OPA!

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 04/12/2019 2:42 PM DST

ctarleton profile image
ctarleton

Hi John, I had Provenge almost 3 years ago.

During the leukapheresis sessions a few days before each Provenge treatment I had reactions to the citrate anticoagulant used in the machine, which chelated calcium from my blood as it circulated back into my body. Facial tingling, phantom skin sensations (the couch felt like it was vibrating, but it was not), and an all over "buzzing" feeling during the last half of the sessions. I had a massive hot flash during the second session and almost passed out from a vasovagal nerve reaction (probably due to the prolonged venous irritations). It helped me to have somebody with me who would drive home.

I was weak and tired.

When I got the Provenge infusions, I had very few sensations/symptoms during the infusions, themselves. The stuff comes out of cold storage so the blankets helped. After we went home, I didn't have many symptoms until the next day. For the next 2-3 days I felt Really Weak and Really Tired, much like having the flu, but without having the "wet" coughing and sneezing symptoms. About the time I was to go home after the 2nd infusion I went into Afib with RVR and spent hours in the ER being treated with drugs for that (related? who knows?). The next day I developed a blood clot in my left elbow vein which resulted in yet another trip to the ER, and which eventually cleared within 4 days. After all that, I decided to skip cycle #3 and said "close enough". My body had definitely been strongly "Juiced-up", immune-wise, by the treatments. The Doc concurred.

Charles

greatjohn profile image
greatjohn in reply toctarleton

it's all about the RESULTS! Sounds like you and your doctor are happy with yours. I'm hoping it does give my immune system a boost. It's been almost a year ago for me. Yours sounds like a very drastic effect from the treatment. Glad you got the two under under your belt. All the best,

John

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

You deserve... well ok.... a silver medal...🎖️

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 04/12/2019 2:46 PM DST

Tjc1 profile image
Tjc1

Seems i get the worst of side effcts from all of it.

greatjohn profile image
greatjohn in reply toTjc1

Wishing that you start to get the best results from all of the treatments!

Big hugs,

John

SeosamhM profile image
SeosamhM

Thanks for this. And, coincidentally, Great J, I am undergoing my first Provenge leukophoresis tomorrow, and I have no illusions - quite frankly, I am preparing just as I did for being strapped down in my own plastic cage for radiation or the slow drip-drip of chemo that I knew would floor me in 8 hours.

Two things I've learned for certain:

1. Never believe the brochure.

2. No heroes, just survivors....

greatjohn profile image
greatjohn in reply toSeosamhM

I'll be there in spirit with you...hoping for the best results and the least side effects. Sounds like you were a boy scout also...."be prepare".

John

SeosamhM profile image
SeosamhM in reply togreatjohn

Thanks, brother. As a child of the 80s, I often think of the words of the immortal "Magnum, P.I.": "Work the lock. Don't look at the dogs. Work the lock....."

greatjohn profile image
greatjohn in reply toSeosamhM

I loved that show! ! ! (and his mustache)

all the best.

gJohn

SeosamhM profile image
SeosamhM in reply togreatjohn

Yep, as a guy who can’t grow facial hair even with testosterone, Selleck’s ‘stache is a marvel! Keep on with yers, GJ!

As for my first leukapheresis....

<div class="tenor-gif-embed" data-postid="3464845" data-share-method="host" data-width="100%" data-aspect-ratio="1.0060362173038229"><a href="tenor.com/view/frankenstein... Be Worse....Young Frankenstein GIF</a> from <a href="tenor.com/search/frankenste... GIFs</a></div><script type="text/javascript" async src="tenor.com/embed.js"></script>

I just became functional this afternoon and spent time moving rocks in the garden with my wife on a cool Colorado spring day...turned out okay! Cheers! - Joe M

greatjohn profile image
greatjohn in reply toSeosamhM

it's 81 degrees and humid already in Sunny South Florida...but we still did a little gardening just a few minutes ago before the "real" heat starts...LOL. It always makes me feel good to be outside raking, clipping and planting and mulching....whilst listening to the birds.

wish I had some of you "cool".

Have a great Sunday !

John

tallguy2 profile image
tallguy2

All those side effects. What about beating back that PCa? I've heard so much about Provenge, mostly that it's not worth the $100K. Your results matter. What would you say, greatjohn?

charlesmeyers1964 profile image
charlesmeyers1964 in reply totallguy2

it cost nothing. all provenge is suppose to do is keep your body healthy until there no options left

charlie

greatjohn profile image
greatjohn in reply totallguy2

I wouldn't say that. I have it in my head that it's the "seed" for a potential miracle. Any time one talks about making our own immune system "charged up" to fight a disease ...or cancer....I get excited. I'm only one year out from it (10 months really) but I try to have faith that it's working to make my own immune system fight the good fight. Provenge really does fit the definitely of "faith" from the Bible...LOL.

"Now faith is the substance of things hoped for, the evidence of things not seen" Hebrews 11: 1.

**there are supposedly no test markers (PSA, etc.) to check so its truly "hoped for" and "not seen".

gjohn

abmicro profile image
abmicro

I got Provenge and Red Cross did the white cell extraction on the machine. They would not let me watch the "Ted" comedy movie because people would laugh and the needles would fall out. I stayed still. leukapheresis extraction of white cells seemed endless - almost 3 hours to get enough white cells. The Dendrion lab destroyed one of the bags of white cells and I had to go back 2 weeks later to do it again. When they infused the treated white cells back into my arm about a week days later, I had no side effects. Perhaps it was because I did the treatment with a low PSA and there was not much Cancer to kill.

monte1111 profile image
monte1111 in reply toabmicro

What the hell! Ted was on my list. What is approved? Six feet under? I'm still bitching about Kaiser's Oncology waiting room funeral music. Made written complaint. They even called me back the same day. Went to Ophthalmology the other day. Nice upbeat music, almost jazz. Was almost snapping my fingers. Jeeze.

thats why they put u to sleep to put a port in and there is no more needles they feed everything from the port. the size of the needles have no effect from the port

charlie

Grumpyswife profile image
Grumpyswife

The worst part of Provenge for my husband was having the unnecessary port and living with that for two months. It was not needed in his case but the clinic was misinformed and behind the times.

It was also extremely stressful to have the treatment interrupted by a hurricane and traveling to Minnesota to finish the series. At least they were up to date as they had been in the initial trial and we received excellent service there.

greatjohn profile image
greatjohn in reply toGrumpyswife

Hmmm....as you might have read from some, the port seems to have been a blessing compared to having both arms strapped down with giant needles in them...and not able to move even a 1/4" without alarms going off. I prayed to make it without port installation and did, but wonder now. The last draw took several attempts to find a viable vein. That was NOT fun. I remember your hurricane interruption....those things are never convenient...lol.

John

mcp1941 profile image
mcp1941

I am in my 23rd year fighting PCa and still don't have any detectable mets so when I asked my MO about Provenge he said it is not approved for NMPC. I have to wait for mets to get Provenge. Really sounds stupid to me me. I would think that getting Provenge when tumor burden is low would be the best way to go. Going for my next Axumin PET/CT scan next month still hoping no mets.

Mike P.

Grumpyswife profile image
Grumpyswife

My husband enjoys his hot showers every day and that became difficult with the port. There was stress in having to get to the hospital so early in the morning to have it inserted and then being at their mercy to get rid of the thing.

There was also a serious risk of infection and keeping moisture from the area while we were in a flooding area prone to hurricanes watching the Houston floods. Then there is the scarring and potential complications from insertion and removal so close to one's heart.

He sat next to others without the port who received their treatments without a problem which made his port seem even more archaic. I understand it may be necessary if one has week veins but that was never an issue for my guy.

in reply toGrumpyswife

Really? I’m from the Houston area, had a port for almost eight months, and enjoyed my daily hot showers. His port is suppose to be self sealing. My friends who had long lines for chemo could not take a hot shower..... and had to wrap Saran Wrap to kept their arms dry....... so many different experiences........ minding amazing.

Gourd Dancer

Grumpyswife profile image
Grumpyswife in reply to

My husbands port was not self sealing and he was warned no moisture. We did go the route of using sealing Saran Wrap stuff as he had to have his shower. Chemo ports are different.

Mathes72 profile image
Mathes72 in reply toGrumpyswife

Used saran wrap in the shower also,my wife an I had not showered togather in memory

Mathes72 profile image
Mathes72

I went through provenge one year an eight months,not bad had the tubes in my chest,was glad they recomended it,but it was not fun,has anyone had any results? it goes not lower psa.I was told.

greatjohn profile image
greatjohn in reply toMathes72

from my response above...

" I have it in my head that it's the "seed" for a potential miracle. Any time one talks about making our own immune system "charged up" to fight a disease ...or cancer....I get excited. I'm only one year out from it (10 months really) but I try to have faith that it's working to make my own immune system fight the good fight. Provenge really does fit the definitely of "faith" from the Bible...LOL.

"Now faith is the substance of things hoped for, the evidence of things not seen" Hebrews 11: 1.

**there are supposedly no test markers (PSA, etc.) to check so its truly "hoped for" and "not seen"."

John

Mathes72 profile image
Mathes72 in reply togreatjohn

I keep on hopeinbg

Grumpyswife profile image
Grumpyswife in reply togreatjohn

The “proof” is still above ground.

Magnus1964 profile image
Magnus1964

Wow! I never went through anything like that. I hated being tethered to that centrifuge for 2 hours but I was not strapped down. I hated those tubes stuck in my chest. But I survived.

Lombardi24 profile image
Lombardi24

I hope after all that you get some positive results. 🤞🤞🤞

Lombardi24 profile image
Lombardi24

John. Are you in England?

greatjohn profile image
greatjohn in reply toLombardi24

no not in England, but close......LOL....Ft. Lauderdale!

Today I would love a rainy, overcast day in London. It's so hot here already.

Why do you ask?

John

Lombardi24 profile image
Lombardi24 in reply togreatjohn

Not sure why I thought that. Traveling to London was hoping to meet you

greatjohn profile image
greatjohn in reply toLombardi24

well...if you get to Ft. Lauderdale (it's closer) be sure to let me know...would love to do lunch or coffee and chat.

John

p.s. have fun in London. I try to get there every chance I get. I love it. We were all over England, Scotland and Ireland last year on our summer holiday. This year we're staying closer and doing Minnesota (Minneapolis for the state fair) for a week...and then a 9 day tour of the sights out west...Mt. Rushmore, Crazy Horse, Yellowstone...etc...and then taking a scenic overnight train from where the tour ends in Salt Lake City to Sacramento. (will be seeing a friend and staying with him there for a few days...and then home to the grind of doctors, tests & schedules.....

John

Lombardi24 profile image
Lombardi24 in reply togreatjohn

Sounds like a great vaca!

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

OPA!

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 04/12/2019 2:41 PM DST

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

From the White House:

j-o-h-n: Play it once, greatjohn. For old times' sake.

greatjohn: I don't know what you mean, Mr. j-o-h-n..

j-o-h-n: Play it, greatjohn. Play "As Time Goes By."

greatjohn: Oh, I can't remember it, Mr. J-o-h-n. I'm a little rusty on it.

j-o-h-n: I'll hum it for you. Da-dy-da-dy-da-dum, da-dy-da-dee-da-dum...

j-o-h-n: Sing it, greatjohn.

youtube.com/watch?v=d22CiKM...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 04/12/2019 5:55 PM DST

Patrick-Turner profile image
Patrick-Turner

Hi great john,

I see yet again that treatment effects are often understated. Doctors can describe what they will do, then you are In hell while they do it, and I guess your bank account is in agony as well. I heard Provenge costs big dough.

Its not available here in Oz, and may never be. and efficacy is never certain because so many don't get a good result for the $$$$. But one man emailed me during last 3 years to say he'd had Provenge 10 years ago and was doing real well and it seems that is only possible if the treated immune cells which are pumped back into body regenerate and new immune cells have the new abilities passed on in the following generations. But these men appear to be a small minority.

Good luck with all of that.

Patrick Turner.

greatjohn profile image
greatjohn in reply toPatrick-Turner

yes...I was told(by the girls at the blood removal center) about a similar "tale" about a man who did GREAT after his treatment with Provenge. It's a better chance than winning the lottery, so I am hoping I'll "win" on this lottery....as I haven't yet won the $$lottery. LOL.

Have a great weekend down under.

John

Patrick-Turner profile image
Patrick-Turner in reply togreatjohn

I'm spending up fairly bigtime on Lu177 ( enough to buy a small new car ) and it might only give me a year before things get bad again with Pca.

So far, it seems to be working after 3 infusions, and with few side effects, and being injected last time was real easy, a lady doctor was like a caring version of Albert Einstein at age 45, and she just had been involved in a lot of research here for Pca and had published many papers of cell behaviors and had an honours medical degree. So when I said I cycled, she said she

had a son who cycled 500km a week, so she understands cyclists, and I was not road vermin. She wanted me back on bike asap. I said I had a painful hip joint and her remedy was adopted by public hospital onco specialist I am seeing, 20 Grey EBRT to help kill 2 pea sized mets, one above hip joint in pelvis and one below joint in femur, in the bone marrow, and afaik, that is about the worst possible place to have a Pca met. Plus I have started enzalutamide. Too early to say yet if addition of enzal will boost next and 4th Lu177, but this Lady Louise said the enzal will make my mets express more PsMa and this will attract more LU177 to mets so they'll get shot to bits better by more beta particles. Now its 6 weeks after I spoke to her, and after the RT, and cortisone inject to hip joint plus MRI and total body scan etc, and hip is less painful, and dared to cycle 15km today, not too badly, after a 2 month rest off bike. Nobody has suggested the total body scan showed more mets, so Hoo Ray.

Anyway, this research doc was taking time in a new cancer treatment ward

of a new hospital between her times doing research. She made sure she got the canula in then tested it, then pushed in the Lu177 all within 10 minutes, then left me with a 1L jug of water, and said that when I had drank 2L, I'd probably be ready to go home. They served me a light lunch, and I read the newspapers for 2 hours, and a nurse measured my radioactivity levels at 1M distance using a Geiger counter and a long wooden measuring stick. Within 2.5 hours, level went to 11 units, so they let me go home, and I got a cab to railway, got a train home, and as we say, "No Wukkin Furries !".

Immune Therapy can be spectacularly good when it works, and alarmingly

awful when it does not, ie, the altered white cells might attack some healthy cells. The research at Marsden Hospital in UK have had a success rate of less than 15%, including a few who had months to live, but who went into apparent remission like response, so they began a new life. Others had no response, and others had terrible side effects, but most were end stage Pca sufferers where nothing else could have kept them alive for more than 4 months. The guys who did best had Pca with many mutations. So there were crazy results, and the research successes may be too few for any of this fabulous work to be approved by UK Govt or anyone else, but much research is being done, to try to get our immune systems to SEE THE CANCER which invents methods to be able to hide. I heard that company originally involved with Provenge quit giving it and sold it to someone else who I read knew how to make it more effective, and whether that's true, or just marketing BS is unknown.

Trubbel with life is we get cancer. It is a real darn big Trubbel to un-get cancer. But getting our own immune cells able to see cancer is the Holy Grail. If only we could **easily** do this. The beauty of IT is that when our immune system cells are able to see our cancer as enemy, they work away on it for years. But when I get Lu177, this clever nuclide therapy is only effective while its in my body, which is only for a few weeks. During that time, its radioactivity reduce by 1/2 in days, and most of the body has no use at all for lutetium chloride, and it is pissed out and kidneys cop a bashing in first week or two while its radioactive. In fact 1/2 the dose given is down the toilet in first 24 hours. But enough is retained by ligand to Pca spots long enough to kill a lot of Pca cells, but not all. So when Lu177 has ceased its action, remaining Pca cells are wondering "Has that bitch Aunty Lutetia vamoosed yet?" and they continue growing. Well, there's only so many doses of Lu177 that can be tolerated, and when PsMa expression goes low, it seems Lu177 is ineffective, so you'd have to wait for Pca to grow a bit to show up in PsMa Ga scans before getting a top-up shot of Lu177. So far so good, I seem to have good kidneys, I didn't drink enough booze to wreck them and liver is also OK, so I had a great advantage at 71 going into chemo and then Lu177 treatments because I was not much damaged by bad habits, and had kept myself on straight and narrow puritan-frugal regime of athlete eating and drinking and exercise habits.

It was a frabjous day here, 23C max, no wind, sunny, and The God Of Whether was inviting everyone to feel good about being alive, and maybe on daze like today, even depressed old men might become un-depressed, I certainly hope those among us who are depressed try to find a way out of their gloom. Somebody wrote here that 1 in 6 Pca victims had depression, and I thought, gee, only 1 in 6? I thought the rate was maybe higher for general population because when you are 70+, you know your use-by date is rushing towards you, and the world does not value old men much and all the things which put us in a good mood at 30 cannot now be done, and ecstasy of being can only be possible with Fentanyl, to cover the cracks in our bones.

Yes, the Party Of Life will end soon, but so darn what. Ya won't suffer when ya gone. And whoever was happy at 30? My diary suggests there was pain with work, relationships, never enough dough, taxman hit hard, and so many unexpected difficulties. I escaped from 30 to now with no depression, and no signs of PTSD from life, happy to be useful to my customers, I was worth paying, so I was valued. Many might refuse to admit they have PTSD from life. We all know how soldiers returning from wars get PTSD, and they claim for millions from Govt, and have endless nightmares. But what happens after a man has managed to get to say 80 and so many ppl or illnesses have taken a shot at him?

Anyway, only a short little cycle ride today, and this really did enhance how I have been feeling generally.

I hope you all have a nice Sunday and week ahead.

Patrick Turner.

greatjohn profile image
greatjohn in reply toPatrick-Turner

Wow, I feel like I know you now. That was beautiful! Lets hope for a long remission and smooth biking for you for many years!

John

Patrick-Turner profile image
Patrick-Turner in reply togreatjohn

While alive, and sane, I'll try to stay alive and accept whatever seems to be a reasonable option offered by doctors. I've now outlived my dad by 12 years. There will be a time when its not worth fighting, and then just asking for fentanyl, or Nembutal. But my sister's battle with Oa was brutally short, diagnosed 1 year after first mild symptoms of mysterious tummy aches. The had a full hysterectomy, and had 4 shots of chemo which merely delayed the inevitable, and went from her home where she was raising her 15yo daughter to a hospice, given 2 weeks to live, and she could not eat, and they gave her a morphine drip and a button to press to get more morphine if pain got worse. A lawyer came to write her will on paper, and I last saw her 12 hours before she died alone at 6am due to morphine overdose. She was quite OK it seemed, walked around gardens with me to chat. Thousands are self administering morphine to beat the pain, they all know they are doomed, so they just keep pressing button in a stupor to bring oblivion.

So don't fear the end with Pca if that's going to cause it. Just a miserable daze at end, then ya glad to un-exist.

Most of my working life was on building sites riddled with risks of being killed or injured. I rode motorcycles, and marriage could have ruined me, but the lady had huge mental bothers so she left. My knees went kaput at 49, so I took up electronics working on tube amps full of lethal voltages and could have died alone from the shocks I got, and then a knee doc fixed up knees a bit to allow cycling so I rode another 140,000km since 2006 and now and I could have fallen off or been run over 1,000 times, but here I am. So I am plain lucky at 72, but always there will be something that outwits our ability to stay alive and we don't have any control over some of these things. No amount of will power, meditation, casting spells, will have any effect on our DNA and what it is programmed to do, ie, to slowly but surely become less controlled and less self healing as we age, so we need our good doctors to extend our healthy time when one DNA problem called cancer becomes a killer, but we will still live on to die. There are many who live long enough to have multiple defects in their being, my mum made it to 98, spent her time in bed, unable to communicate. People get like a 90 year old Ford, and it has to stay roadworthy for us to remain alive, and finally something breaks that cannot be mended, and last time I looked, there were enough 90yo Fords in Museums, so sadly they are dismantled for spares, and some parts melted down to be recycled, so thus re-incarnation is sort of kind of possible, but with all living things there is little re-cycling, and our atoms are set free on their random journey from a hole in the ground to a nearby tree, or to the air, from a chimney and they meet other free atoms, some of which form new life. So we are just borrowing a few atoms of the Universe. They are remarkable critters, atoms, there's roughly 100 varieties, and they have surprising affinity to marry each other to make complex molecules where possible, and afaik, this process is common throughout the Universe on the billions of planets where life evolved, is now present, or is yet to evolve.

Enter Hydrogen, "Do though takest Oxygen to be your lawful wedded wife ?" ...… "Oh yes I do," I then pronounce you Water", and to remain together until death doth part" Occasionally Oxygen can be hard to keep on the porch when she meets Iron, and marries him to make Rust, or iron oxide, and leaves Hydrogen all lonely to wander about to find another partner. If Hydrogen meets Carbon, or Nitrogen, he enters the exciting times of greater complexity where marriages then become threesomes, foursomes, fivesomes, and there's never a stable marriage to be seen, divorce and re-marriage is constant, so welcome to the reality of atomic bonding. We mimic this with our cities full of variety of ppl. Being Sunday, I feel free to mention such matters, and I can contemplate the little that science knows about Nature and I never have to invent or import any idea about a God who has made it all come to be. Life just is, and is a result the affinity of the many varieties of atoms for one another, and if there was a God, then this is how he, or she, or it found a way to assemble the whole big darn thing, and nothing we might think can ever explain it all, because for every answer we get to a question about atoms and stars, there are 10 more questions, and our brains have limited finite ability to understand infinity, or eternity. Our technology is primitive compared to what might likely be found elsewhere in Universe, but the reason for death is that all things that attract together to form a complex entity cannot ever remain the same because over time the atoms change and chaos finally swallows up order, and my only advice is to not worry about God, but be good to all those around while you can, uphold goodness fiercely while alive, which means you must question your own goodness, and this all means that wars with others are inevitable. But the bliss of love is possible and the simpler you live, the clearer it all becomes. Its easy to think we are dismantling our world, making it worse just by being here, after Life took hundreds of millions of years to make things very nice for us to be in our world. All I can say is that my wonderment of bliss at an early age led me to being a doer of real things, a wanter of life's experiences, but I never managed to have kids. I am not gay, but remain 125% hetero, but really, not many dames could really connect beyond having sex with a considerate lover that I was, and figuring all that out was more difficult than atomic theory, so when your kids attend an auction to buy a house, mine won't be there to bid against yours. By not breeding, we do each other a favour. In China, they abolished the 1 child per couple rule and allowed more, but the birth rate continues to fall, so China will get old before ever becoming more powerful than everyone else, and as ppl age, they tend to become more peaceful, able to handle anger better, so there's some hope. The younger ppl see how difficult it is to exist and that tones down their instinct to breed, love, seek bliss, because they have to deal with being poor slaves. I bought a land and humble 2 bedroom cottage for 3 year's wages in 1976. Now, the same package would cost about 9 years' wages, and the young have to ration themselves carefully to manage, leaving little for children, so how come? We cannot control our economic system, but at least we ain't missiling atom bombs at each other. This is an entirely different world to what may have been imagined in 1819, or 019, or 2019BC. So the past wisdoms become invalid. Behold, Life is wonderful, no?

Patrick Turner.

greatjohn profile image
greatjohn in reply toPatrick-Turner

Wow, great & interesting reply...& "yes"....Life is wonderful...or as I say "Life is Beautiful".

JUST THIS MORNING..on our walk through the neighborhood with our Sparky(dog), we first encounter a VERY young little baby turtle...in the street. I took him across and put him next to one of the ponds on the golf course... We next encountered a pair of "FESHLY" born kittens (with eyes closed still) in the edge of the street. I carried them in a paper towel to the carport of a man who has "lots of cats"...hoping he can figure out what to do for them...

it's a full circle of birth, life, & death around us everyday...it's all a part of the beauty.

Patrick-Turner profile image
Patrick-Turner in reply togreatjohn

Turtles here tend to wander and we know they do in Spring because of the squashed ones on the surrounding country roads, but we are seeing less, because of a prolonged drought. The road kill of many things, kangaroos, a few possums, occasional wombat gives the carnivore birds a feast to eat, no shortage of them, plus a few eagles, but not in the fairly leafy green suburb where I live. The only abundant wildlife are the local possums which are seen only at night, and heard running about on my roof.

Those kittens might have been dropped there by someone not wanting them, because it would be unusual for a mother cat to leave its young like that. There's a story there of abandonment maybe.

Yes, life is around us always, and that's the wonder.

Stay well as you can,

Patrick Turner.

monte1111 profile image
monte1111

Much better than hemlock tea. I think. I'm sure someone is going to say that hemlock tea, properly prepared, and taken at the proper time of day, will have a generally favorable influence in the outcome of prostate cancer. Sad, but I must share my cheese with the cat. I am sure that is some kind of animal abuse. But tonight it taco truck night, hope they show up. Cheers.

monte1111 profile image
monte1111

Yeah, sounds like it is a miracle for the very few. We all hope to be in that few. Now, to port or not to port. Think I'll port. As to summer, just got bit by a mosquito. Believe it just fell over dead.

theopolis profile image
theopolis

That's similar to my chemo (taxotere) experience...it was ROUGH, I feel sorry for anybody that has to go through it.

Shepard profile image
Shepard

My Provenge experience was not so bad. The first one was a little difficult because the the tech was rushing the collection. Fortunately I had a bottle of Tums on hand to compensate for the chelated calcium. The two subsequent collections with a different tech when smoothly. Infusions was a snap by comparison - my cells were warmed under the arm pits of a nice nurse. Was it all worth it? I don't know. I was moved to Xtandi and PSA declined from 166 to 25. Next week I will have by second Xofigo injection. The first one did not cause any bad side effects - maybe a little fatique, but then I am 80 years old and work seven to eight hours a day on the ranch. I do think exercise (active body and mind) are important. My only serious complaint is with the Lupron/low T I have lost muscle mass and strength despite the physical activity. Bone mets cause some pain, but not so bad. I can do all that is necessary on my ranch and am happy to be vertical on this journey. May yours go as well.

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