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Advanced Prostate Cancer
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Lu-177-PSMA First Infusion

My father received his first treatment yesterday September 7th. This is a picture after his 1st infusion. The past 6 weeks waiting has been truly roughest we have experienced. He has had severe abdominal pains, difficulty urinating requiring surgical placement of a suprapubic tube. He has ha bleeding from the SP. Late August he began to look more pale, and anemic. He had a loss of appetite and lost 8 pounds in 3weeks. His first true cancer pain experience began from his bone Mets. He has osteoblasts and lyric lesions throughly his sternum, spine, ribs, pelvis femur. His Hemoglobin has been progressively dropping. The trial requires he maintained HBG of 10, he was 9.7. Upon arrival to Omaha he had a blood test, CT and bone scan.HBG was 9.6 he required a transfusion (1 unit of blood). Friday we arrived to the urology center and met with Dr.Luke and the team. He received Zofran 12mg premedication. He then was taken to a separate room where he would receive the Lutitium injection. They prepped him giving him ice packs for salivary gland damage protection. He then received the 1 minute injection of lutetium followed by 250 ml of saline. He said he didn’t feel anything different. We left 2 hours later. They used a gigameter (vintage looking thing) and my father was beeping of the charts. We went back to our hotel and he has been in the room since. He has some body aches today- bone pain expected to worsen the first 1-4 days. He has had no other symptoms. We are all just praying that this will be successful. His CT scan on Thursday showed significant lung metastasis. 🙏🏼

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I wish your dad the best. I hope the treatment is successful

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And he is STILL smiling!!!!!! That's a good sign. Hoping the best for your dad.

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Thank You 🙏🏼 he was so radioactive we were making fun of him!! Lol

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Good thoughts coming your way.

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Thank you! I’m really praying that this works because he has lyphagenic carcinamatosis ( not sure if I spelled it correctly). The Dr was concerned about the new pulmonary metastasis. When I looked it up- it was a frightening description. Of course I’m worried and praying that Lutitium -177 will knock it out.🙏🏼

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I have been thinking of you and your Dad.

Thank you so much for keeping us informed. It's nice seeing your handsome Dad looking so well. My husband has lung mets, too, so I am interested in how they are affected. I think that Raul who went to Germany had lung mets as well and they were gone. He doesn't seem to post anymore.

Mary

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Hugs and Prayers for both of you. Your dad looks like a cutie and it sounds like he is quite a tough guy!

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Good to hear that he is doing well.. hope all treatment will be very successful.

I know from Germany hospital that they keep the patient in nuclear medicine ward post Lu infusion for 3 days and no visitors are allowed . Looks like it's not the same here .

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Hi yes, every country, state has specific regulations. Australia is similar to the USA. You are discharged the day of treatment with a set of instructions to limit radiation exposure.

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Also- forgot to mention-PSA went up from 150 to 300 in 5 week -all nodes increased in size.. but this treatment is promising 🙏🏼

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Was this before the first infusion...my psa went up 100 points after my first infusion. I haven't had a psa done since...this coming Thursday

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Let's be positive that your PSA will drop and you will respond in a very good way . Will wait for the good news :)

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His haD a PSA 300 preinfusion. We don’t know yet since it’s only been a few days. They won’t check for a few weeks i believe.

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Great photo! Thanks for sharing and keeping us updated! We are praying for a wonderful response to the treatment!

Best,

James

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Have been watching for your posting. I can only imagine that it has been a long wait. Thanks for sharing and praying for great success from this treatment!

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My prayers are with him.

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Sorry to hear about the problems, he still looks great though and that's already a good sign.

I've read of many success stories with Lutathera, with PSA drops of 70% or so and even some full remissions for 1-2 years.

Hopefully it'll be included in the standard of care soon.

Best wishes and keep him in good spirits, it's very important.

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He looks great! Handsome Gent! I hope and pray this works fabulously for him.

:)

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Thanks for the good details of how the treatment was administered.

Hope it works really well for your Dad!

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I wish you the best😉

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I hope all goes well for your dad. Summarizing all the 20 other replies gives me a picture of your dad's Psa rising from 150 to 300 and with a lot of pain before the first Lu177 infusion just 2 days ago. So now I guess you have to wait and see and deal with the side effects of Lu177, but in Australia, so far, there is a reduction of Psa in 80% of patients and it seems to work best with soft tissure mets, so lymph nodes, lung, liver, kidneys. Bone mets usually take longer to get a reduction of bone met size, but bones have solid cement like external material with partially hollow interiors for bone marrow and blood vessels, so getting the bone mets to show a reduction in a scan is difficult. But if the bone mets generate PsMa then the Lu177 should make its way via blood vessels in bones, and do some work to kill Pca. But I cannot say just what sort of mess than all leaves behind, as I am not a qualified medico. But if the later or ongoing PsMa scans show smaller bone mets, then it bodes well for your dad's future. Here in "Oz" during a trial which began in 2016, one guy who was very sick with only a few months left was able to get out of bed and Psa reduced hugely.

The trial took about 6 months with men getting 4 infusions.

But the trouble with all the trials is that nobody gets to know just how these men fared a year or 2 years later.

German studies gave a rather low median time for where Pca is deemed to be progressing

after treatment but then most men getting Lu177 have become end stage patients with high Psa and no other options. But as time goes by, more men will try to get Lu177 BEFORE their Psa goes high, ie, the total mass of tumours has become both painful and an imminent threat to their life.

Possibly, men with Psa < 50 who don't yet have many symptoms from Pca would benefit most, but the trials will confirm if this is true.

My Psa was 27 after the last chemo no 4. I began Docetaxel 13 weeks ago, Psa was 12, and many small bone mets, but otherwise PsMa Gallium scans showed nothing in organs, which means there could be thousands of mets, but still to small for scan to see.

But Lu177 will be attracted to whatever is there, big or small, although we must wonder about extremely small mets and wonder if there is a size limitation for Lu177 to work. If there were 100 cells of Pca ( a very tiny met which could have millions of Pca cells ),

Maybe no Lu177 arrives at the scene of this small tumour so it later grows and grows.

That indicates a reason for the ultimate progression of Pca. But then when these mets get big enough, just get more Lu177. I know a guy who was diagnosed 20 years ago, and he

has had 7 infusions and he was in the trial here that began in August 2016.

He's fairly well, I spoke to him last week.

But some men in the trial here did not respond at all. I don't know why. So such treatments become a gamble after awhile, but the odds are in most men's favour and what all of us want is a cure, but that is usually expecting more than can be attained, but a few more years of good life may be possible.

If the chemo I am having now does not appear to be working, there's a trial of Cabazitaxel OR Lu177, which would be free, and as far as I know yet, if one does not work then they give you the other. It would be quite obvious which one you are getting when they start.

I hope to get a benefit before my Psa reaches 50.

Its 11 days since the last chemo infusion and I cycled 32km today OK, and things will get better for next 10days when next chemo is due, and Psa will then guide th docs to either continue or transfer me to a trial. But between 2 days and 9 days after each chemo, QOL is not so good, but I seem to be coping better than most.

People joke about being radioactive after Lu177, or other forms of radiation,

I had lots of RT to PG. So I glow bright green in the dark from my PG so if I lose my glasses at night, I do a down with pants and usually I can find them. I don't have a partner, so this offensive sight of an old man of 71 with green light from groin area does not offend anyone.

I wish your dad all the luck in the world.

Patrick Turner.

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Patrick thank you for your informative response. Yes, my father is end stage with no other options. I pray that Lu177 just gives us more time and takes away the aches and pains. He remains on Zytiga while on the trial. We don’t know if it doing much at all but we were explained that continuing on it may provide better results. My father is 79, he was a very active till the beginning of this year. He has stopped walking as exercise and progressively declining. His scans have many bone Mets all ribs, lots in spine, pelvis scapula, skull, many many spots. Uncountable lymph nodes. We just pray that he has an 80% decline.

There are not many on this site that have had Lu177 treatment. Is there a site in Australia 🇦🇺 that people talk on similar to this. I would love to hear about others experiences. Please share if you know of any.

As for my father, We know this is not a cure but we hope just buying is time so he can spend with grandchildren.❤️thank you. Send over big hugs to Oz, praying that your treatments are successful.

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Was your dad chosen for a trial ? What are the criteria for being chosen if that is the case? Wish him the best..

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Hi Daddys daughter, In Australia, Lu177 has had ongoing trials since August 2016 with 30 patients at Peter Mac at Melbourne, and now a longer trial with many more patients is underway in a number of hopspitals around the country. I was told I'd be able to get into one of these in Sydney, which means travelling 300km from where I live in Canberra to attend the trial, which is OK, and the trial has no costs. There is also a clinic called Theranostics based in Perth where a Dr Lenzo from USA has been licensed to operate to sell Lu177 and other things and he also has a clinic in Sydney. Dr Lenzo has been here for maybe 3 years now. 4 infusions of Lu177 cost aud $40,000, about usd $30,000. There are probably other add on costs and none of this is covered by Medicare.

The trial here is for either Cabazitaxel OR Lu177. Its totally free, but I don't know if someone from USA could attend it. The guys running trial say I might be accepted, but my onco has to refer me, and will ne put on Cabazitaxal or Lu177. From what little I know, if there is a poor response with either treatment, they switch you over to the other, and in my case, if Docetaxel which I am having at Canberra hospital, all free, does not appear to be working, Cabazitaxel would be the used anyway as next chemo drug. So the trial here suits me, I would get what the local hospital is offering, and if it does not work, I'd get Lu177, for free.

Or I could choose to buy the Lu177, I have the dough, and because Psa is still < 50 I have some time to try chemo, and IMHO, although chemo does not kill all Pca cells, it does kill a lot in soft tissues and I had a friend of 58 who has had Pca progression 4 times faster than mine, with almost nothing having a big effect, although chemo did seem to get rid of many mets in soft issues. He has Psa 40 at start of chemo, it went fast to 2.0, then after 6 chemo shots Psa began rising. But it was not all in vain. He's now being given Enzalutamide and qualifies for a trial leading to Lu177, and maybe he he gets years more life.

I have had ADT ( Androgen Deprevation Therapy, aka chemical castration, aka testosterone production suppressions ) since 2010. It failed in 2016, and I had some extra SBRT to PG ( seemed to have worked ) and began Cosadex 50mg per day, which worked for only 6 months. Then I began Zytiga which worked for 8 months.

The Zytiga has a list of 10 side effects, 3 of which relate to heart operation. I had uneven heart rate. But all during this time getting treatment since 2010, I have cycled about 85,000km, in some years I cycled 12,000km. I have such a good diet and do enough exercise that its difficult to make friends of ppl my age because most all sit about doing nothing.

However, I cannot cycle with a local group here because of the chemo. They are mostly 10 years or more younger, do 85km rideds, and chemo has slowed me.

But most of my cycling has been alone from ppl, but very much accompanied by the presence of the world. I am lucky to be so mentally secure.

The last infusion was 11 days ago, and for first 6 days I don't cycle but there's a pile of other stuff to do, so despite the "overcast cloudy feelingof the soul" I still get a lot done, just not too much, and last 5 days did small rides, 10km, and was OK, but yesterday I did 32km, and so suddenly, I am able to ride again and so I do, and so during the chemo I bounce back, and I'll cycle to the next chemo session like last time.

But meanwhile I know a whole pile of tiny Pca cells are growing and the chemo is not getting all of them, and I can only get what I can with Lu177, and it may turn out that letting them get a little bigger makes them better targets. But nobody really can know their situation, and there may be thousands of mets which have seeded themselves all over me and all are at different stage of development and in theory, a man would have to keep having Lu177 to clean out what it can, but a man's body would not tolerate it well because with enough Lu177 doses the accumulated side effects build up.

I can see why Lu177 gives time, eases pains, but maybe cannot give a cure, although with some patients they do get similar effect of true remission with Psa extremely low, but then Psa rises again. This might be the best outcome anyone could have from Lu177.

The problem with all radiation is that it cannot be continuous, like chemo.

The ONLY therapy which looks like it will work against cancer continuously is immune therapy. This is because white blood cells can be changed to make them recognize the cancer cells as being The Enemy. Provenge treatment removes white cells, changes them somehow, puts them back into body. But success rates are low, median extension of life is 4 months, but there are men who have had remission for 9 years, ie, since the time Provenge treatment was first available. They are the lucky few.

Marsden Hospital in UK is also working on immune therapy, and 15% get a benefit with some getting real remissions. This is because the white cells which have been altered divide and grow to make new cells which carry the alteration to defeat the Pca. So unlike all other therapies, immune therapies offer huge promise of success. But there is risk of altered immune cells attacking healthy cells. Marsden say they developed Zytiga, so they are not a dumb research place, they do get results and i hope they get well beyond the experimantal levels soon.

I might be around in time for the IT to mature to be possible, but fighting cancer is a big industry, and its why it attracts Big $$$$$. But as fast as anyone tries to fight cancer, the cancer tends to mutate, and after each lot of cancer cells divide to form new cancer cells there is some DNA change so that after many generations of cell changes the cancer had become a different form of cancer. Cancer thus becomes varigated, and much harder to treat, and maybe it is impossible to ever find a way of killing all of it before it kills a patient. So then ppl are faced with dealing with mortality, and in the absence of medical magicians, I plan to just deal with becoming fertilizer for a tree when I have to.

I am lucky to not have lived in say 1718, when the chance of me being alive at 71 was about zero, and if I was, I'd have the terrible suffering due to numerous ailments that the doctors of 1718 had zero knowledge of. Most doctors worked just like witchdoctors in a primitive tribe someplace.

Besides, in 1718, I'd have had to walk everywhere, and both my knees would have worn out sooner than they did. So we all should be grateful for the modern world, because it gives us our parents for so much longer than in all preceding generations of humanity's history where most were lucky to get to 35, enough time to make children, then see them right by 18, and farewell them soon.

My mum lived to 98, died from combined effects of old age. It seemed natural, and I saw her decline from her mental best at 60. But my father died at 60, from melanoma in 1973 when once it spread, there was little time. He was just starting to become more socially tolerable, a likable older man. There was nothing anyone could do. So we all just had to accept it. I had a sister die at 60 from Oa, and she had so little time.

I think I have become used to a number of ppl just not being there like they used to be, but my other sister is OK at 74, lively and happy, and she had double mastectomy about 8 years ago, and appears to have beaten Bca. When I was 20, none of my family thought we'd get cancer, but then nearly all of us did get it.....

Today, I'm cycling out to get lunch, then a blood test to check white cell levels 1/2 way between chemo shots, then I'll cycle a bit further, maybe 30km all up.

Then I have workshop work to do. It has been very pleasant to type to all of those here, because I feel we are all better off if we share our pain, and in fact, there's nothing like a good sit down and a good cry; its Nature's way of getting us to come to embrace reality. But at the cafe where i have lunch, someone will say something funny, and I'll be laughing.....

Or as I cycle past a sports field, I might see a dog chasing a soccer ball with its owner, and all seems well in the world....

I'm a bit like the dog, it doesn't really know why it chases the ball, but hey, seems like fun, and so it understands Wonderment.

Patrick Turner.

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Thanks for openly sharing your wonderfully positive but realistic outlook Patrick. Much appreciated!

Deb

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Best wishes

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Prying for you

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Prayed for your father’s positive response to the Lu-177. He looked great. PC is one of those cancer that most people doesn’t realize we have it. I’ll be looking for good news update from you in a few weeks.

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Thank you! Hope you are well- hugs to you💙

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Best wishes and prayers coming your way!! 🙏🏻. Your Dad is so handsome, God bless!!! He's smiling and that is a good sign. Positive attitude.😊

My husband is 75 and he is now on a targated therapy drug called Cometriq..latest PSA test this past week was over two hundred.?? He only been on full strength therapy for one month, had to reduce the strength of the drug because of the brutal side effects. It did nothing so back on full strength. We are going to another dr. Down at the university of Penn in Phila. This coming Wednesday.

Please keep us all informed on how your Dad is doing????

Take care of you and Dad!!! Hugs!!!

Love, Lynn

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Thanks so much for sharing. This seems like a possible help for so many.

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Thank you so much for this update. There is a lot of interest in this therapy. Will your dad have another injection?

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Yes on October 19th

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Great post - thanks so much for sharing. I hope all goes well for the two of you.

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Thank you

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Thanks for the update. I wish I looked as good as he does. Forget about the Pca I think you better watch him with the nurses.

Good Luck and Good Health.

j-o-h-n Monday 09/10/2018 5:58 PM EDT

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Your dad looks great & i go for my first infusion in a couple of days & hope to be as bright as him after. I read somewhere the psa goes up after the infusion due to the dead cells in the blood.

All the best to you both.

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Please let us know how it went. I would recommend ice packs 1 hour before and up to 3-4 hours later. My father experienced pretty severe dry mouth!

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All the best wishes for your dad. Keep us informed on his progress. We don’t have LU-177 here in Canada but are looking at a US trial or paying the big $$$ in Germany. This is the next step for my husband as docetaxel did nothing and he has started cabazitaxel. Cancer so aggressive right now we couldn’t wait the testing period before treatment could begin on Lu-177. At 66 we are looking at anything that might buy him some time similar to your dad.

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My father is in a trial in Omaha. I can send you the trial link if your interested in contacting them. Same trial Also available in Minnesota at Mayo Clinic. This might be closer to you depending on where you live in Canada. 😁

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No words of wisdom here, just a prayer for you and your Father.

I love his smile.

You are a great Daughter, I thank you for sharing and been along his side on his journey

A big hug to you🙏💜

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The day after the Lutetium & i feal ok,a bit tired & thirsty but we will find the results in 4 or 5 weeks after 2 blood tests & maybe another infusion is needed then. I am a test case here because i did not go through the ADT.

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Thank you for letting us know and please share any and all details as you are able. It is so exciting and interesting!

You have different circumstances because you chose not to use ADT which should be of great interest to others in similar circumstances as you.

My husband and I completely understand your feelings as he put off ADT as long as he could (15 years) and when he finally started quickly became castration resistant.

Good luck to you and keep posting.

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Thank you mjbach, i went in blindly believing every word i was told by uroligist & then 2 different MO. After awhile they moved me on after realizing i was not putting up with the side effects.

So now i am lucky to be able to pay for the treatment here & i have a MO that understands.

Heres hoping & if i can be of help to any body with this terrible disease i will from my own experience.

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My father as well very fatigued, dry mouth and just sleepy. He has had nausea, and decreased appetite. Today was his first day feeling better.

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Please keep us posted. Your father is at the leading edge of medicine to try to stop this disease!

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