Update on my fathers 1st Lu-177-PSMA-... - Advanced Prostate...

Advanced Prostate Cancer

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Update on my fathers 1st Lu-177-PSMA-617 treatment

Daddysdaughter profile image

It’s been 2 weeks since my father received his 1st treatment. Today he is feeling much better he has his energy back and he no longer has the aches and pains of bone metastasis. In the last 10 days he has experienced dry mouth and a few episodes of nausea and fatigue that is beyond what is experienced with ADT. He appears to be more anemic and may require another transfusion prior to treatment in October. He does have a very superficial inguinal lymph node that he can feel, over the last few months it has gotten bigger but just started to decrease in size over the past week. So far we’re hoping for positive results. He is going in today to get his labs drawn to check his kidneys and blood count. Hopefully he will also have his PSA drawn. It was 300 as of September 6th. Fingers crossed that he gets some sort of decline in PSA showing that the treatment is working.

35 Replies

Good news. Always so good to see some sort of progress.

Best of luck. It could take several weeks to get a PSA decline, in my case about 6 weeks.

He had a very small decrease in PSA which could also be because they were taken at different labs. But still

There was no increase which to me is progress!

Mine increased 100 points after first treatment and after the last treatment went back 100. I'm going for scans in a couple of weeks. I don't think it worked for me.

How many weeks has it been since you completed treatment? Was it a tapering dose?

It's been about a month since my second and last treatment. They said the two doses were the same. I had more side effects (mostly fatigue) after the second dose.

Good news is positive news. Stay positive.

Great news so far. Relief from bone pain is a major accomplishment. Researchers in Germany had some success in preventing dry mouth by irrigating and dilating the salivary glands and injecting steroids; you may want to show this to his doctor:

link.springer.com/article/1...

Thank you I will for sure.

GP24 profile image
GP24 in reply to Daddysdaughter

Stefano Fanti recommends the "wash out" of salivary glands with lemon. See this video at minute 9.15:

urotoday.com/video-lectures...

I know a patient who did this successfully without talking to his doctor. It is not dangerous to generate a lot of saliva.

Daddysdaughter profile image
Daddysdaughter in reply to GP24

I will definitely take a look at this. I think my father could have had the ice wrap a bit Longer pre/ post injection

I had the ice wrap for about 10 hours during and after the infusion. They changed it every hour. They gave me lemon mints that i have to suck all the time for several days (at least 3 nights). I did not have any problem with the salivary glands.

Flydoggy profile image
Flydoggy in reply to tango65

Where did you have your treatment Tango65?

tango65 profile image
tango65 in reply to Flydoggy

At The Technical University of Munich.

I am so glad that he is feeling better. I have been thinking about the two of you and praying for you both.

Thank you ❤️❤️big hugs to you and your hubby.

I’m so happy for you both! Seems like it is working! Prayers for continued success.

Hurray - such a good report. Have been wondering! I know he had quite a struggle before you got him in for the 1st treatment. Thanks for the update!!!

Great news. Wishing the best

Thank you

PSA decreased from 300 to 286 in 2 weeks and alk phos also decreased from 235 to 185! He did need a unit of blood today but he has been slowly oozing through his suprapubic tube (expected because he is on plavix). Again all good news except his BUN/Creatinine has increased. I’m assuming because of The treatment

Happy to hear of your dad’s positive results! He is fortunate to have a loving daughter in you! Prayers for your dad’s complete healing!

Thank you 😊

Really happy to hear the good news.

Hi Daddysdaughter,

I guess you are happy your dad feels less pain and there's hope for him living longer from what I have read the Lu177 gives lower Psa in more than 50% of patients. Lu177 and other radio active treatments seek to lower the amount of Pca which usually involves the result of lowering Psa. It is a different situation to having ADT where the Psa is usually lowered a lot initially, but the Pca tumours remain alive and well, but mainly asleep. So ADT does not reduce the Pca a man has, it just gives false hope because sooner or later the Pca that was asleep mutates to make its own testosterone and then things like Zytiga and Cosadex are used to block the testoosterone action, and unfortunately, the Pca mutates to find a way around the blocking action.

The Lu177, ( or actinium225 ) marches into position close to Pca cells and says the the Pca cells, "No look 'ere you varmints, I am here to stop all this nonsense with giving bach-chat to doctors and behaving badly, so avva dose of Beta or Gamma and then lets see if youse might like to surrender...."

At present, I have now had 4 chemo shots with Docetaxel beginning 10 weeks ago and Psa was 12.0 before chemo, but now is 40++ and the doubling time is a month, and this is somewhat alarming, because in 3 months Psa could be 320, and I would not expect to feel well or have no pain.

I am going to ask to be referred to a Doctor Lenzo here in Oz who can do Lu177, Radium 223, and I have no faith that changing from Docetaxel to Cabazitaxel will be effective.

But let us all hope that your dad is around for a good many years more.

The dry mouth thing with Theranostic treats with Lu177 etc is proving a headache to avoid. But I have a friend who is now 79, and before he was diagnosed with Pca he had a small cancer in his neck, and he had surgery, IMRT, and chemo, and that was 10+ years ago, and he's fine now. But the IMRT gave him a dry mouth but he copes OK with special chewing gum, and maybe some other stuff in a bottle to help. Another friend here had had 6 x Lu177 shots, and his mouth is dry, and he chews frozen pineapple slices. Last time I spoke to him for 30 minutes he seemed to be coping real well, and not bad for an old man. So although dry mouth is no fun, its not all bad compared to the alternative where whatever is used still allows Pca to win too easily.

At my hospital where I get chemo, the chief nurse said to me "Patrick, If you don't have a sense of humour, get outa here."

I'm looking at the twinkle in her eyes, and Im thinking, Holy Moses, I'd marry this

woman right now if I could. But she's choosy. Can't win 'em all :-)

Now the nurses in chemo wards have the constant stress of knowing many patients will die despite the wonderful care they try to give.

If I had a dry mouth, I think I'd try hard to tell jokes with a dry sense of humour.

Anyway, I can't get through a day without having a laugh with someone or other and there's no use being too serious.

Do ya wish me to put a bottle of Champagne in fridge for when you dad gets a lot better?

Patrick Turner.

Patrick, you are so funny! Keep your flirtatious self with the nurses, it always changes the mood when sitting in the chair for hours with chemo. My father would do the same while my mom sat back and would whisper “he only jokes and smiles with the nurses😜- not ever me..” Thank you for the humor. Yes my dad is doing well and we are so far happy with what we are seeing. He has only had 1 treatment so far. Are you in the US? The Vision trial is trying to enroll 750 men. It’s a great option I believe, especially because randomized 2:1 chances are greater you will get in. Just a thought! Well keep up the fight, we are getting closer and closer to winning this battle. 🤞 fingers crossed!

And yes you might as well chill a few bottles!!🍾

Thank you

Monique

I am in the US

On last 3 chemos, I cycled 19km over to hospital to get it. Then 19km home.

And its the nature of chemo, a man feels terrible for a week after chemo then he recovers and feels good for the next on I'm at day 6 now, and am improving justa bit because the poisonous Docetaxel level has reduced.

I'm not sure what happens to it, but assume it ends up in the sewerage treatment works where all the millions of bugs in the water with Pca all have miraculous cures. Mind you though, our city, with its high average income and large number of politicians and ppl employed in jobs of inconsequential significance, ( doing SFA and still being paid ) the cocaine levels are high, and experts have confirmed this with water tests. So the bugs would be happy no matter that the Docetaxel levels are.

Anyway, I get strange looks from ppl when I attend hospitals dressed in lycra.... "what are you doin here man, ain't nottin we can see wrong", and I have to explain I have serious bone cancer. One doc said In was the healthiest cancer patient in the hospital, and I said "looks are deceiving, Yeah, now about that Psa....." Hospitals are definitely a "social leveleler" where all sorts of ppl from all sorts of backgrounds find themselves looking at each other and only a dummy is not thinking they are one of many, and that other ppl have troubles too.

At last chemo, I had to get up for a pee, so off to the loo with the trolley stand and bag, but I managed a kind of badly done waltz on the way back with the trolley, and probably just as well I didn't trip over a tube. Nurses kinda had a grim smile, "cheer up darlin, we are only here for a life sentence"

As time goes past, I'll try to get on the Atomic Train, the one where passengers all flow dull green with a conductor Ms Lutetia, and driver Mr Radium. "Never mind the side effects, your'e all going to get a few extra laps around the world."

I already glow bright green from my prostate due to EBRT, and to not alarm ppl in restaurants at night, I must keep my pants on.

BUT, if I had a dear lady partner, she would, like me, need glasses to read, and like me, forget where she had put them at times.

So I would be getting "Come over here darling, pull ya pants down to help me find me glasses......." But alas, no partner, but I still have to hunt around for my glasses.

Spring weather here today, 20C forecast, HOORAY. I can't say what sort of summer I will have. But its better than freezing cold.

I'm in Australia, in its capitol city Canberra which other ppl in "Oz" think is a total waste of money, some even say our city is a terrible waste of what was a good paddock for sheep to graze, and in fact, the land here was just that before the city was founded. But the states of Oz agreed to unite in about 1900, and they sensibly said they'd need a National Parliament and they naturally found it easy to locate the new argumentative mob of Federal Polly Tichans a very long way from our two major cities of Melbourne and Sydney.

I quite like the fact ppl from Oz think my "town" is the Most Boring Joint because it stops too many coming here. It is so much better living here than in the larger cities.

If I score a referral to Dr Lenzo and his Atomics, I'll have to travel to Sydney, 300km, to get it, but that's not a worry.

Some men display inconsistent behaviour with various women. The stack of 45,369 books on the library shelves point all this out very clearly.

So a man might be serious with his wife, but funny with the nurses.

In what might be thought of as sad, a man's wife kinda becomes his mother, she gets a title "The Missus", and if the man had a stern no-nonsense mother he carries on the tradition of being serious with his wife lest she give him a hitting with a wooden spoon. Old habits die hard. But the nurse, well, she's a kind of being that tempts, a Temptress in fact, one of the few rare ladies that isn't a relative, and in an imagined world could be the naughty alteranative to where he is, with "the wife". There is a beast in every man which would like to seek alteranative female company to what he has.

Of course, over a short trouble filled 20 years between 20 and 40, I found all women also had a Beast Within which urged and permitted them to not be faithful or demeaningly loyal; it was part of liberation.

My mother once said that it was not my the fact that my father strayed sometimes that upset her, it was his terrible choice of women.

He kept returning to his Old Faithful, and even at 60, I could hear them going at it at night, in our large timber house where everything anyone did could be heard. On his deathbed, he told my mum he loved her, first time in 35 years.

So socially incorrect today! Ya hafta tell ppl you love them each 5 minutes lest they have a terrible break down of poor self esteem.....

But in fact, my dad loved by his deeds, not by his words, far more relevant IMHO. But we all had to bury the hatchet and forgive as we went along in family life. I am kinda lucky I didn't have a succession of parents that occurs because adults can't stay with the same partners so familes are all mixed up, so "who is dad?" a kid might ask, or he / she says or at least thinks "this dad ain't as good as the last one". My guess is that today's social arrangements in our liberal society might more natural, like say 100,00 years ago, some 90,000

years before our species invented civilization, and with it, the Stiff Upper Lip. Back in old times, you might not know who your real son or daughter was, but you'd be nice to them so they'd run about to help you live better.

Despite the fact Homo Sapiens might otherwise be named Homo Mefirstious, enough of us quite like other ppl who happen to be un-related or related, so we are co-operative, and if we were not, we'd be all stuck back in and even earlier time before evolving a brain size capable of considering ideas of peace, love, and humour.

Getting closer to a cycle ride ride to lunch at a cafe......

Keep well Daddysdaughter, don't worry about daddy smiling at a nurse.

Patrick Turner.

Good news. Hoping for the best 🙏🙏🙏

Happy to hear the improvement!

Sounds like progress to me!! Decrease in pain is a step in the right direction. That's wonderful news :-) All the best.--Stacy

Good luck. sounds great.

to Daddysdaughter: Gr8 news 4 Dad! His dry mouth, let him wet his whistle.

Good Luck and Good Health.

j-o-h-n Tuesday 09/25/2018 5:14 PM EDT

Good news! I am headed up to Omaha next week to do my initial screening.

Fingers crossed for hot of us!

How exciting!!! The team is amazing! Dr.Luke & Laura are the best. Fingers crossed 🤞 you will be PSMA positive and qualify!

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