Thankful to Mr LU-177.: Just had the... - Advanced Prostate...

Advanced Prostate Cancer

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Thankful to Mr LU-177.

ARIES29 profile image
30 Replies

Just had the results of my first treatment of LU-177 & i never thought i would be so happy for a change in this journey of PSA readings,ADT treatment, ect.

PSA was 20 & rising now is 5.3 after 6 to 8 weeks of the treatment & i go back in January for second treatment that should knock it for 6. But as we all know we are just gaining time on this trip.

Keep on Fighting the good fight & never give in!!

30 Replies
Hazard profile image
Hazard

That's great news Aries. I hope that you are able to relax a bit and enjoy yourself until the next shot in Jan, and that it brings equally good results.

Keep fighting!

ARIES29 profile image
ARIES29 in reply to Hazard

Thanks hazard, i thought out of the square & the usual chemo/hormone treatment that makes us feal like crap & i hope some others look for the trials of this treatment because it obviously works.

joancarles profile image
joancarles

Great news!!!!!!!

ARIES29 profile image
ARIES29 in reply to joancarles

Thank you.

henukit profile image
henukit

Fantastic! Really glad it worked for you!

ARIES29 profile image
ARIES29 in reply to henukit

Thank you.

AlanMeyer profile image
AlanMeyer

That sounds like a very good response.

Can you tell us anything about what the treatment was like and the side effects?

I presume they tested you first with a PET scan for PSMA, the molecules that appear on the surface of cancer cells and attract the Lu-177 carrier molecule. Did they tell you anything about the results of the PET scan? Was it positive, very positive, terrific, or what?

Thanks.

Alan

ARIES29 profile image
ARIES29 in reply to AlanMeyer

The Gsma 68pet scan showed lymph nodes& somewhere in left side of the neck were positive with PSA of 20. So now down to 3.5 & another treatment in January.

The side effects were minimal, fatigue in second & third week after & the treatment itself was in the form of a drip into the arm & In Australia it is a day treatment. It was expensive but trials are available.

Borntopaint profile image
Borntopaint

That is great! I am not familiar with LU 177 but I will be looking it up for sure.

ARIES29 profile image
ARIES29 in reply to Borntopaint

It worked for me so I had to share the news.

MelaniePaul profile image
MelaniePaul

Wow, that's great news. Enjoy the happiness! :-) And good luck for the next treatment cycle.

ARIES29 profile image
ARIES29 in reply to MelaniePaul

Thank you

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

to ARIES29: Great Great News!!! That's the way to RAM it home.....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 11/08/2018 5:55 PM EST

ARIES29 profile image
ARIES29 in reply to j-o-h-n

Thanks, the good humour is so important

CrocodileShoes profile image
CrocodileShoes

Hi Aries,

How great to hear about your treatment. I'm in the UK but a regular visitor to Melbourne. I'm probably going to have the PSMA scan in February when I'm there, and hope to talk to people about whether I'd be a candidate. I read that they were looking to bring Lu-PSMA further down the chain of treatments. I have no clear evidence that mine has spread (hence the scan) but my rapidly rising PSA since recurrence would suggest it has. I'm currently responding very well to Casodex as monotherapy, though the side effects are not great. Could I ask you:

1. DId you become hormone refractory and hence the Lu treatment? Or was it that you sought an alternative to ADT?

2. You refer to a 2 year period before it progresses. Is that standard for most patients? As it's such a new treatment, might there be some for whom it lasts longer than 2 years?

3. Should your PSA increase after two years, will you be able to have a 'top-up' infusion of Lu and do they think it could give you a further 2 years of being disease 'free'?

I'll be travelling around Australia, and would love to buy you a beer and talk about your experience with this exciting new treatment!

ARIES29 profile image
ARIES29 in reply to CrocodileShoes

Hello crocadile shoes, what a name!

Yes the side effects of casodex are what made me research the Lu-177 treatment & wate for the shot of Luprin in the rear end to really brighten your day.

Interesting to note that in Germany these days they do not bother with Chemo or hormone treatment but go strate to Lu-177 treatment.

About the 2 year time limit,- that is what Dr Lenzo suggested to me when i started the treatment so if you contact Theranostics the reception will answer most questions.

My main concern after overcoming the cost of it was kidney damage as the kidneys handle all waste bearing liquid leaving the body.

My treatment was done in Sydney & next one is in January next year as they recomend 2 treatments to start with & more if needed.

Glad to share a beer with you when you are down this way! All the best with your journey.

gyancey profile image
gyancey

Good to hear! Heading to Bad Berkka Germany for my first round of LU-177 March 15th.

whatsinaname profile image
whatsinaname in reply to gyancey

Could you tell us very briefly what happened in Bad Berka in March, 2019 ??

Thank you very much.

gyancey profile image
gyancey in reply to whatsinaname

Hi Whatsinaname,

I was there for a week. Monday I had a PSMA scan, Tuesday I had the the LU-177 treatment. Wednesday and Thursday I was in isolation. I was released Friday afternoon afternoon. Because there was some evidence that it had spread to my liver I had an Ultrasound and an MRI. Both came back negative. I was very impressed with Dr. Baum.

I'm not sure if this is the information you were looking for. Please let me know what additional information you might need. If you are considering getting treatment in Bad Berka I have some tips to make the trip easier.

Good Luck!!

Gyancey

whatsinaname profile image
whatsinaname in reply to gyancey

Thank you very much, gyancey for that information.

Yes, indeed, could you please give me the tips that could make the trip easier ?? Also, how are you feeling now ?? Your PSA ?? Your mets ?? How many treatments did you have in all ??

Much obliged to you, gyancey for your help. Thank you very much.

gyancey profile image
gyancey in reply to whatsinaname

I Have had two treatments, one in March and the second early June. Side effects were not bad,mainly fatigue. After the second treatment the bone and lymph node mets are gone. Since going on Lupron/Zytiga/Prednisone last summer my PSA has remained 0.1. Feeling good except for the side effects of the ADT treatment.

As far as the experience at Bad Berka I would suggest bringing your own pillow. The bedding they have there is cheap because they have to burn it all after treatment. Also I would bring some of your own food. Their food is typical hospital fare.

(maybe i'm too picky) If you have someone traveling with you Weimar is a nice town that is 20 minutes from Bad Berka. My wife stayed there and enjoyed it. lot's of cute shops and a few good restaurants.

Hope this helps.

Gyancey

whatsinaname profile image
whatsinaname in reply to gyancey

Thank you very much, gyancey. That was extremely helpful. Much obliged.

All the very best to you.

Patrick-Turner profile image
Patrick-Turner

I've just had 4 x Lu177 shots since No1 at 4 Nov 2018. Psa was 25, then 5 before No 4, and Psa is slowly going low maybe because I have Pca in bones mainly, and Lu177 works slow in bone mets.

I get next Psa on Friday, and have also been on enzalutamide since just after Lu17 no 3 shot, so docs said I'd be supercharging effect of Lu177 and I hope they are right.

But I may find the opposite happens. One can't ever predict outcomes.

I tried chemo last year with Docetaxel and Psa went from 12 to a max of 50 before I called it quits to change to lu177. But I didn't think Docet would work, and nor did my doc, but by trying it and having it fail meant I was free to buy Lu177 from Theranostics Australia, even though it does not have phase 3 trial approvals.

For me, at 72, its not over yet.

Patrick Turner.

ARIES29 profile image
ARIES29 in reply to Patrick-Turner

Keep up the fight Patrick,i just turned 70 & with psa of 1.78 & rising i know im in for hell eventually or they come up with a different way of fighting this monster.

But Lutetium reduced my psa from 20 to .68 so am thankfull for that.

Patrick-Turner profile image
Patrick-Turner in reply to ARIES29

That's good news ARIES29, and I guess you may wonder how long that good response with Lu177 will last. I talk to my doc for Lu177 and my local oncologist on Thursday next, one after the other, and between them they may concur what's best for me, regardless of Psa, which may have started to rise, or just continued downwards below the last count at 3.7, from 25 before started Lu177. The fight ain't over, and I'll explore whatever the docs have up their sleeve including dna test for Brca2 gene and maybe what is used for ovarian cancer. It was Oa that took a sister, other had Brca, but narrowly survived after double mastectomy. Melanoma took dad, and maybe Oa took his mother, so I bet I am positive, and some of my Pca is maybe only treatable by these other things. It won't be cheap.

My mum lived to 98, no cancer, and plain old age got her. But there probably is a bad gene somewhere from dad's side of family.

Then there is Ra223. Anyway I just had another PsMa scan this am and docs will have something to discuss, these dudes do like trying to keep me alive with what little they know. If Lu177 had not been around then I would have had Docetaxel which failed, maybe Cabazataxel, then Carboplatin and side effects would have ruined QOL and I'd have asked to have palliative care, and just quit. There is a time to do that. But I ain't there yet, and if Psa goes low, I'll get a crook hip fixed and maybe get back on bike...….

One never knows if some immune therapy will be approved, or something else, if I live long enough.

All the best, I need to eat after starving for the scan,

Patrick Turner.

ARIES29 profile image
ARIES29 in reply to Patrick-Turner

You sound like you & your Doctors have it all under control there Patrick so let me know how you get on.

My urologist came up with the option to be castrated & apart from cemo thats all they have so i will not make old bones as they say.

Keep up the fight & never give in as the world is full of people that just could not care less.

Patrick-Turner profile image
Patrick-Turner in reply to ARIES29

Cutting balls out is about equal to having ADT injects, and probably a lot cheaper, but then you still might need to have the procession of added Casodex and then Abiraterone Ztytiga or Enzalutamide then chemo.

But after beginning abiraterone in mid 2017 after having both knee joints replaced in Feb 2017 when Psa had a low point < 1.0, I rejoined a cycling group for 85km Sunday rides and all the blokes my age and with full amount of testosterone could not keep up, and none of the shielas, mainly 40 years younger, so a castrated man can still put in a good athletic performance if he's determined to stay fit with regular cycling total of 200km per week.

Lu177 has now taken my Pca status back to about June 2017, Psa 1.6, and falling, while on enzalutamide that is supposed to work because chemo and and the Lu177 should have re-sensitized my Pca to either abiraterone or enzalutamide. I now have to wait and see what happens.

But when Psa goes up again, as doc said it will, then there are more options, more expense, etc,

But I have a blow hip joint, maybe because of EBRT I had in 2010, and if I cycle now or walk too far there's terrible hip pain after, so I cannot do vigorous exercise and this will cause Time the Dismantler to reduce my health faster.

I'm holding weight down, not eating as many calories, but all good food that many would find to be socially unacceptable. Its OK, I have CFA social life, never had a family, so there are few I upset by just being my self.

Patrick Turner.

ARIES29 profile image
ARIES29 in reply to Patrick-Turner

Ha Ha, good on you Patrick,your a battler thats for sure. Good ozie attitude.

Keep up the fight!

I might say im not near as far down that road as you.I just will not have chemo & the medical people will not tolerate me because of that,they have to make money out of you or they will not talk to you.

I will see a radiotherapist soon to see if they cant burn the last tumour out.

Stay in touch my friend.

whatsinaname profile image
whatsinaname in reply to ARIES29

"They have to make money out of you or they will not talk to you" ----Seems to me, living in Bombay, India, that at least 80% of doctors are that way, maybe more.

Patrick-Turner profile image
Patrick-Turner in reply to ARIES29

Hi ARIES29,

Depending on where you go to talk to a doctor, their attitude to money varies, and doctors who operate as private enterprise companies are not willing to give you one second of their time for free to anyone. They tend to prefer $250 per hour or more.

Such doctors are not charity organisations willing to give their time to cash strapped Pca sufferers.

But doctors employed in Australia's public hospital system are paid a wage by a Government owned entity, so they get paid each day regardless of whether anyone comes to talk to them or not. Usually the pay rate per hour is lower than doctors who are also businessmen, and the average patient is poor, but many doctors don't mind the ease of such an existence without having to worry about $$$$$ every day. The medical skill differences between private or public doctors is possibly nil. But because ppl have to pay private doctors more than public doctors, more try to get medical treatment from public so the queues for medical services is a lot larger with longer waiting times and delays compared to ppl who can afford the private doctors and who pay more for the same services.

I heard that it will always be impossible for our Oz Medicare system to be adopted in USA for one horrible reason, the doctors will never allow their services to be any cheaper so the biggest expense of a USA Medicare would be doctor's earnings, and these are upheld by active lobbying and supporting of Democrat or Republican pollytishans who are always having to seek funds to support being re-elected.

I had chemo when that was the standard next step after Zytiga failed. There as nothing else, except Lu177, but I had to fail chemo before being able to buy Lu177. Lu177 has no Phase 3 approval, and so a vast number of men cannot demand it before the normal procession of treatments have failed.

But my oncologist ( in public system who costs me 0.0$ ) said chemo was unlikely to work on bone mets, and maybe not on soft tissue mets either, and this relates to the fact of the early description of my Pca cells being aggressive. I have slow growing Pca, but none the less aggressive, so maybe others get a huge benefit from chemo, I probably never could, and I surely did not after 4 shots when Psa had quadrupled. So my dear oncologist didn't hesitate to refer me to Lu177, as he said he would if chemo didn't work.

So, there not very men getting Lu177 in Oz, and the doctor in charge of main provider of Lu177 here, Theranostics said he'd done 700 patients in 3 years since he began this business. That averages about 4.7 patients a week, and when I went to Lu177 administering hospitals in Sydney, there were a maximum of 4 patients, but on first 2 sessions there were 2. I know TA's home site is in Perth, and maybe they get 4 a week, and as popularity of Lu177 increases and more acceptance of it, there is a bigger demand. Lu177 therapy is nuclide therapy, and injection of one of many radioactive things that kills cancer cells, and the theranostic principle behind its use involves a ligand chemical which makes nuclide therapy targeted to cancer cells, and maybe far safer than other forms of radiation such as EBRT which uses high energy X-rays and which is only target in its direction, like a beam of light from a torch, so that all things in that path of the beam cop a dose of DNA damaging radiation. I suspect the problem I am having with my right hip is due to effects of EBRT that was used on me as primary treatment with beams directed to PG in 4 directions, up and down vertically, east and west horizontally, with the later beams going through my hip joints which did my joint cartilages no good at all, so said one doc.

I've seen chemo seem to work very well for some men with Pca, but often not for long, and after 3 infusions, Psa may have fallen from 40 to 2.0, it then stays level, and after 10 chemos its back up to 40 with a large number of long lasting side effects. Then what?

One guy then began getting Pca lesions in his liver that didn't generate PsMa avidity, so Lu177 would be useless, so docs tried DNA analysis and PARP inhibitors and Psa shot up from 40 to 432 so fast that it outpaced any further thing they tried. and so he died. He had about The Worst form of Pca that all the things I tried didn't help him last longer than 3 years after diagnosis.

So there is no predictable outcome once a man gets to chemo time.

One man here was so frightened by Pca after diagnosis and so aware that an RP would probably fail like it so often does that he begged a private surgeon to do a far more radical operation where PG is removed, penile urethra cut short at possible away from PG, bladder is removed, and both ureters from kidneys are brought together to a stoma hole in lower left abdomen for insertion of a plastic connector that allows a urine collection bag to be fitted.

Ten years later he is alive and well because it seems there was no Pca spread to other places in his body, and he was lucky that was not the case, because 12 years ago there was nothing to detect small mets, and even now a man can have hundreds of microscopic mets for years before they grow big enough to be seen by any available scan or search by a microscope.

This man with a pee bag joins the other 45,000 ppl in Oz with pee bags, or maybe solids bags, or both, and they never have to get up 5 times a night to pee, and can pee a liter at a time, so maybe 3 times day, while I pee 10 times a day. Of course this man has complete ED, but had he wanted, he could have had an penile prosthetic inserted that allows

erections or none, and because he has full amount of testosterone he'd respond to erotic stimulation and be able to have pleasure.

His wife is a very understanding woman. None of the side effects of ADT have occurred.

The problem with RP is that the surgery site is not very far away from where the Pca has occurred in PG, hence some Pca cells remain after surgery. of some healthy PG cells remain, and in time, they develop Pca, and this may explain how some men see Psa fall from say 7 before RP to less than 0.01 afterwards, but then 2 years alter, Psa is 0.02, then 3 months later its 0.03, and so on, and that may lead to a 10 year battle costing the man or Medicare maybe $150,000.

How many men vote to have bladder out with PG and 100% ED? almost none, its very expensive, but it works well with men having low gleason scores.

One sister died of Oa, other got a Brca lump in one breast. She went straight to double mastectomy. She escaped the progression of Brca and is OK now 10 years later but had a major side effect of ruining her desire for any man, which had been high before her op.

But she and I have learnt that being asexual and without a partner is not life threatening. We are both not needy, and fairly robust, and we know that having a partner can bring a larger list of problems than being alone. Anyway, its been easy for me to stay partner free when I asked myself how much better off would I be, or a prospective partner be or both of us be if we lived together? If I could not see a yes to such simple questions, then just be friends, which of course is often impossible because so many possible partners want vibrant intimacy, and their minds have not moved on from being 30. My mind has.

For years I loved cycling around this town, and a 2 hour ride was maybe more rewarding than being 2 hours with any lady. Not one lady I ever met could spend 2 hours on a bike ride with me, not even 25 minutes.

One who did last 25mins had rich parents who thought I was a bum, too poor for their precious daughter, so that relationship ended fast. So if not one thing its another...….

So, I do know life alone is quite good, and is as good as being in a happy relationship, which I have seen as being hugely rare amoung the older couples I have seen around.

Lunch was nice today. To reduce hip pains I am taking 1 x Panadol Extra with small amount of codeine in morning and night, and one Voltaren 50 with diclofenac. I'll probably have to up the dose as time goes by.

it will be at least 3 months until any surgery could be done on hip, if it is at all possible due to previous radiation.

Take care everyone,

Patrick Turner.

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