Had my second Lu-177 treatment yesterday, PSA had dropped from 2300 to 730, a 65% reduction in 7 weeks....Seems like it's working very well for me...Also, got the news the trial is now closed in Denver, and other treatment centers too. The sponsors are working on trying to get FDA approval and start commercial marketing of this treatment....According to the doctors in Denver, the trial has been very successful..
Lu-177 "Vision" Trial Results.. - Advanced Prostate...
Lu-177 "Vision" Trial Results..
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Fairwind
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It has been successful in Europe and Australia and other places for many years. Congratulations for your results.
... this gang might be your ‘following seas” god bless Brother
So glad to see you're finding a treatment that's working for you. Great to see that.
How are you feeling overall? Any pain? Side effects?
I'm also glad to hear that it's heading toward being approved. It's difficult or impossible for many to travel and pay out of pocket.
whatsinaname• in reply to
Like almost ALL other treatments, LU-177 has failed with me in Bombay, India.
I am running out of options, but instead of saying FUCK YOU, CANCER, I have a new found respect for the killer disease 
Cheers, gregg57 !!!
• in reply towhatsinaname
I'm really sorry to hear that.
We had a MO at the support group I went to and after the group was over, I was talking to him outside with another guy. He said "I used to have an analogy about prostate cancer being like a car. In one treatment we can steal the locks, in another, we can stick keys in the locks and break them off. But it doesn't work any more because preople use these remote access things now."
On my way home I was thinking: No, the anology still works, The cancer came up with the remote because they broke the locks.
Cancer is always working on work-arounds to the treatments we do. It's one of the harder things to accept about this disease.
whatsinaname• in reply to
100% correct, gregg57, very well put indeed.
I have been on pain killers right through the day today, yesterday
and probably will be on them tomorrow as well.
Wonder how long before cancer deals me the knock-out punch 
Sorry for the self indulgence, gregg57. Enjoy life !!!
• in reply towhatsinaname
It's not self-indulgence, you are dealing with the reality that we are all facing. I'm fighting with everything I have, but like you I am not living in a fantasy world. That bubble got popped quite a while ago.
whatsinaname• in reply to
Thanks for understanding, gregg57.
My best wishes to you in this insidious battle against cancer.
One research doc told me that if Psa rises after having 4 x Lu177 shots, and PsMa scans show mets without PsMa avidity, then its time to get DNA analysed for Brca1+2 genes and maybe have PARP inhibitors, or whatever chemo is likely to work. If Lu177 fails when it did look like it would work after PsMa scans indicated it would, also consider Ac225, but you need the best minds who know about such problems. It all must done quickly, lest the cancer go into runaway mode where the speed of human decisions is not fast enough.
I had 4 x Lu177 shots, last November to last May, Psa went from 25 before to 0.4 now, 9 months later, so a good response, but I know and the doctors know Psa will rise again, or it may not, but its likely a mutant survivor of Lu177 will grow to challenge my life. I wait to find out. Treatment may become experimental. The time for good luck or bad.
But it has been a fabulous Sunday for me, bit of good work on an old AM radio in shed, then lunch, chat with some ppl, then 30km cycle ride, then therapeutic massage by an expert man to get my legs to work better following chemo last year and Lu177, and a bit more EBRT to a hip.
There's so much goodwill in this world.
Last year I thought all this might be impossible.
I don't really know how I will handle the voyage to un-living, but I have so far handled most of my survival efforts alone, so I guess I'll handle my end, no fuss, dramas, and one thing is for sure, there are no worries after we begin to un-live. I don't expect life after un-living, but it would be a nice surprize if I find I am in a better place. There's a time where nothing on Earth matters, including ourselves.
I look forward to a good day tomorrow,
Patrick Turner.
Thanks, Patrick-Turner. I have already done BRCA 1 and BRCA 2 tests and they have indicated zilch. Foundation One said that immunotherapy would not work.
The ONLY thing that could possibly work is a combo Lu-177+ Ac225. In Germany.
Lets see.
Well then good luck in Germany. Don't be frightened, just do it, if the PsMa scans indicate theranostics will work. I have been told I'd be able to get more Lu177, or Ac225, depending on future scan results.
Patrick Turner.
Be wary of Ac-225. The xerostomia it causes creates permanent problems. Please check that out.
Yes, I know about dry mouth side effect. The problem is that if you cannot accept such side effects then you cannot accept the Ac225, and you then avoid the only thing that might extend your OS.
I get dry mouth sometimes at night, not always, and sometimes while cycling. I expect this to get worse in summer. But I'm alive.
But I know a man who has had a dry mouth for 12+ years since he had treatment for a neck cancer that involved IMRT and chemo and a small op. He got remission from that, then later survived his Pca after an RP, but then needed full course of EBRT to PG about 8 years later. He's 80, Psa is about 0.02, so its still there, somewhere, but he's not too worried.
He had a knee joint replaced last week, was back home in 5 days, and now wants the other knee done.
Patrick Turner.
It depends on how bad the "dry mouth " problem really is. After Lu-177, I too have xerostomia. It is bad and I have lost 50% of my appetite. I have also lost 12 kgs weight (26.4 lbs). But, I am managing.
However, almost every doctor I spoke to told me that Ac-225 is 10 times WORSE wrt xerostomia.
My friend of 80 who has had permanent dry mouth for over 12 years has always battled with being overweight but he's on a no-carb diet and is keeping it low. At times he found he could not smell or taste the food, but has his weight closer to where it should be despite not doing much exercise. So maybe everyone's experience is going to be different. Docs in Germany are trying to combine Lu177 and Ac225 to make the radiation more effective but avoid the very problem you point out so clearly.
My friend uses some special chewing gum which gets him through the day, but not having natural saliva poses big risk to teeth and gum health, because saliva contains a pile of anti bacteria agents not found in a glass of water.
I began cycling seriously in 1986, raced in a club for 6 years as a veteran, but I was never a natural athlete so I rarely ever won a race. But I did get as fit as I liked myself to be. Then knee trouble came, I hung up the wheels for 12 years, changed from building work to electronics and gained 20Kg in 12 years.
Then I had arthroscopy for knees in 2005, and could cycle again in 2006 and lost 20Kg in 6 months, and could not get weight any lower than around 83Kg, but I still had higher fat % than most of the faster cyclists I met.
Then came Pca in 2009, and treatment in 2010, and I battled with weight all along, but the 140,000 km on my bike since 2006 right through all treatments kept weight down. I just had a winter doing 3 months of nothing, due to a sore hip, and gained 1Kg, and while on Xtandi that usually causes weight gain, But after returning to the bike 4 weeks ago, its gone, and I'm on a permanent low cal diet with low carbs, and lots of green raw vegies, and its all not very tasty compared to past habits, but weight is still a little too high.
On Zytiga, before chemo last year my weight went 3 Kg lower than now, I felt real good about that. But at 84Kg now, BMI = < 25, and waist < 95cm, and all that's OK and weight could go lower, providing I lost fat not muscle. We can end up with BMI > 25 at 80, and think that might seem OK, but what has changed is that weight has high fat%, low muscle%, so we are weak, so allowing weight loss in old age is probably OK providing we stay fit, and this is the real hard part. Few can exercise vigourously at 80.
The whole picture about your weight has to be considered, and maybe there are reasons you have for weight loss that others do not have because of age and unpredictable reactions to a the procession of Pca treatments.
If you continue losing a lot of weight while having active Pca, then something is causing it, and knowing what it is may be impossible to find out. My dad's weight went real low as his melanoma progressed and as he became hospitalised but one sister with ovarian ca seemed to expand with fluid towards her end days.
If my Pca comes up again, there will be another PsMa scan and if there is enough PsMa avidity I probably will accept more Lu177. I know a man who had 7 shots of Lu177. He said he ate frozen pineapple to avoid the dry mouth.
He's alive, but maybe not too healthy, but he knows nobody can have endless repeats of nuclear therapy. Something is going to give way.
I have limited time on Earth. I cannot say I will always be positive and cheerful. There will be long term side effects from Lu177, because where it does kill the Pca cells, it also kills healthy tissue that takes time to be replaced or repaired if it ever is.
But if there had been no Lu177 available, I'd be in palliative care now, with huge reduction of QOL.
There is not any answer I have for all your problems that come to mind, other than sharing our stories, from which you might then know more about what to ask your docs about.
Its raining now, probably will not be enough to please farmers who are saying the present drought is The Worst they have ever had, so climate change does seem to be here. Food prices will rise.
There could be a war about oil in ME involving Iran. Hoo Noze wotz around the corner. I'll be OK for awhile, but then what? I cannot know all things.
Try to have a good day, or 3, or more.
Patrick Turner.
Having had to deal with the pretty bad side effects of "dry mouth" with Lu-177, I can say with certainty that I would never ever want to do Ac-225.
Even if that meant my having to die.
Of course, everyone is different. They react to treatments differently and have different tolerance levels.
Thanks, Patrick.
Ok, well looks like Ac225 is not for you.
I don't exactly know what is best thing for myself or anyone else where Lu177 has failed, or rather that some of the Pca has a way of growing back despite the Lu177, or despite the ongoing Xtandi. The doctors don't know either and they usually have a standard approach with more blood tests for DNA, and just maybe something works but its never certain.
For me, there will be another PsMa if Psa rises enough to make it likely to get a good image, and when that will be is anyone's guess.
Its interesting that in another post, you say you got a 4 page report for what will not work for you. I never to get any summary of what will work for me, let alone a detailed list of what will not. What doctor knows all that won't work, or is the report generated by some AI algorithm?
I usually got told "this is what must happen now" and with an occasional "this is what you could try, but its not available here, but I'll refer you on", and its treatment a long way away. But that's OK, its a lot better than being told, "there's nothing more anyone can do..."
My city is only 400,000ppl, so does not have the latest or less commonly used treatments only found in bigger cities like Melbourne and Sydney. But these are easy to travel to. When PsMa Ga68 scans first began in 2015, and in Melbourne, my oncologist here had no software to view the scans I had. Lu177 was a mystery, my doc has learnt fast because he's sent a number away to get treated and he soon got the software, so he is now quite aware of what might be achieved by nuclear medicine.
Many of his patients cannot afford the nuclear option, because its not covered by Medicare, and most ppl in public hospitals are poor and also uninsured. So after trying the 4 steps up with 4 types of chemo, there's nothing else. If you end up on the strongest chemo, and when that fails, then you would be a in a big mess with side effects, so then its time to quit if you become immobilised. If the Pca does not get you, the chemo might get you.
If I get sick enough with no hope for any more reprieve, I'll settle for the palliative option.
But right now, today is cloudy, cold, we got a small amount of rain that isn't enough to break the drought.
I'll get out on my bike later if roads are dry.
I've got some work in my shed to do now before lunch,
Patrick Turner.
Whatsinaname
I had zilch results also from BRC1/2 test. Did they tell you all the treatments which wouldn’t work for you as a result?
Thanks
Bob
Yes, the report itself was a 4 page concise summary of what wouldn't work.
Whatsinaname
I guess I’ll have to read it again!
Yes, please do so thoroughly.
Any other questions, please feel free to ask.
Cheers, Bob.
• in reply towhatsinaname
I hope you can climb out of your deep hole one day. What happened when you tried Vit C IV drips? Were they in a booster combination with anything like Enzalutamide (both are very much cheaper in India than elsewhere, so you have some luck there!). Are you taking anti-inflammatories as your primary pain control (Diclofenac, Celecoxib)? Are you on only raw veggies and fruit, and zero sugar? We are all pulling for you! Good luck!
whatsinaname• in reply to
1) I have not done Vit C IV drips, unless they were given to me while doing chemo or Lu-177.
2) I am taking Ultracet & Myospaz for my pain. So far, they work.
3) I am a hard core meat eater. I also eat eggs and other dairy food. I eat fish and sea food. I do eat lots of fruits and some vegetables. Sugar is bad and I have as little as possible. I will NEVER convert to eating grass or leaves to live longer. To each their own.
Thank you for the concern, DavidHealth.
My very best of wishes to you whatsinaname. I had grass and leaves last night, and have a horrible stomach ache this morning. Cheers, my friend. Monte
Sorry to hear you are in so much pain. Promise me never ever to think you are self indulgent when complaining about this fu,,,disease, you have gone thru so much i am sure , so complain, cry , indulge, kick, be obnoxious...but never feel that you cannot...my brother is going thru this rollercoaster called cancer...i dont like the ride but will be with him every dam turn it takes.
What is your story? Is Lu 177 yr last shot?? Or is there still some other ammunition left to try and steal some time..i wish you lass pain for now...love C
Thank you very much, Cosette100.
I am looking for options, if they exist.
Lets see how it goes.
Not self-indulgent at all, whatsinaname. My husband is living the same way presently and it is a miserable way to live without a doubt. It is crushing for our family to watch this proud, dignified leader of a man moan in pain and apologize for his pain. Truly heartbreaking. My heart goes out to you and your spouse. Do whatever you need to do to take care of yourself.
Thank you, Mohopes. I can see you really understand and emphatize.
All the very best to you, your family and of course to your husband.
Very sorry to hear about your husband. This comes from the bottom of my heart.
Just think of this..... every time a doc gives a patient a DRE he's giving the middle finger to cancer...
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 09/15/2019 3:27 PM DST
Good one, j-o-h-n
Fairwind• in reply to
Side effects don't seem as bad as the first treatment.. Just an overall crappy feeling , lots of fatigue, loss of appetite.. No pain.. For the first 3 days after treatment, you must isolate yourself from friends and family, especially youngsters, pee sitting down and flush the bowl 3 times .. Drink lots of water..There's some serious radiation involved here..
Do you have to stay in the hospital for that "isolation" period? And you said, family ... does that mean my wife can't be around me during that time? That is if I do get in the Vision trial. Thanks
No hospital stay. They give you instructions to avoid human contact as much as possible for 3 days after treatment. My wife had to sleep in the guest room for 3 days..You have to pee sitting down to avoid splashing. Drink lots of water to clear the excess isotope out of your system.. Lu-177 has a half-life of 6.6 days..So it's active in your body for about a month..
I have been watching for your results, Fairwind! After the frustration and time it took to get into the trial, it's great to hear the huge drop you've experienced. Keep on dropping!!!!
Hi Fairwind,
I recall if am not wrong you went through Docetaxel (had bad side effects) then also went through Jevtana (no much side effects) .. and then continued on ADT until you began the Lu 177 trial....
I am very happy for your progress and I hope the Lu 177 continues to give you lot more years and keeps the disease burden low.
Best wishes.
Hi Fairwind... First congratulations on your results with
the Lu-177 treatment. Always heard response, although it does not work for everyone. My husband went through all tests, scans etc. to get the trial, He showed PSMA and was a good canadate. He qualified for the trial but was denied.. We were told from the beginning that 66% of men are denied the treatment, we are still so disappointed. My husband is still in the trial,Its"Best of Care" He's on Xtandi?
My question to you is, we are worried my husband had been off treatment for a couple months of any kind while getting ready for the Lu-177...His PSA rose from 89 to 500. You mentioned your PSA was at 2300, before the Lu-177, what treatment were you on? I hoping that the Lu-177 will be FDA approved soon. My husband Sam's
Oncologist was disappointed for us also. We had gone to Gettysburg for the scan, but were going to be able if excepted, to get the treatment here in philly at Jefferson.its also closed here.
Wishing you sincere continued good health.
Lynn.Pa.
Well I finished RU-223 a few months ago and my PSA has been going down steadily for several months. It’s a 51 and going down. I have had every treatment you can think of including brain surgery to remove a tumor the size of an egg. I fell better than I have i three years.
This I know, what works for one may not work for another. I am going to try my best to enjoy this time. I’m going to travel for awhile then return in a couple of months for MRIs, CTs and full body scan I pray it’s clear. Any way it works I’m blessed and Good has been good to me while fighting this horrible disease for 13 years.
I hope all goes well for you Fairwind you will be in my prayers.
Yep dars a Fair wind ablowing landlubber.... Heave ho.... Jolly oh... Captn you hit pay dirt...Good treasure me boy.... I salute ye wid me hook.....
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 09/15/2019 3:35 PM DST
Hi how was your PSA after the 1st treatment, my friend did his 1st treatment a week ago and his PSA went up and his WBC is down, what was your experience on the 1st week. thanks
What great news for those of us in the USA! Let's hope the FDA gets going so more men can be treated successfully.
Great news - glad to hear the Lu177 is doing it's job for you. Where did you get the treatment?
That is fantastic news, Fairwind! It will be very interesting to see just how much Lutetium treatments will cost when they are approved in the good old greedy USA...
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