Just to give an update on my husband (Dondee) on his Lutetium-177 radionuclide therapy. So, he just finished 2nd infusion yesterday and so far he is feeling well with no side effects. Anyway, 1st infusion post scan was compared with the post scan from the 2nd infusion and most metastases on the bones (ribs, pelvis) as well as pelvic lymph nodes reduced in size and avidity. However, there are 2 mets on the spine that didnt decrease in size and it looks like they got a little more intense based on planar scan so we have to do the SPECT scan within 7days just to be sure. But, because he doesnt have pains anymore since 3wks ago, its still a good progress. We are thankful that we can now walk with him much much longer than before, have picnics in the park and he can now ride his bike too! Something that he cannot do since diagnosis in 2018 due to consistent pains especially in the groin area. He still has 2-4 more infusions to go (8 wks apart) depending on the results so we will see 🙏
But for now, he is enjoying his pain-free moments by spending lots of time with the family and riding his bike. Life is too short so we have to make the most of each day!
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dvcarola2
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Keep it up. Biking is important to me as well and I would miss it quite a bit if I wasn't able to do it anymore. Glad Dondee is able to get back on it. That said time with family trumps all, he is blessed, may his treatment achieve all of your wishes.
Thank you. I saw the spark in his eyes the first time he got on the bike after 2 years of not being able to and there’s just no word to describe it! I just hope and pray that he will be pain-free for a long time 🙏
Thank you for telling me GP24. We will discuss with onco about this. Have a great wknd!
After being in so much pain he deserved a break . I’m glad that he’s finally got one . Thanks for the family photo ? It makes my day to see the smiling faces of love that he has . Keep the faith🙏🏼
Yes he truly deserves a break! It was hard to see him before Lu177 when he was walking slowly with legs far apart and bent. Even sitting down for a long time is painful so he works on the computer and attends mtg while lying down on his belly. I just hope it will last for a loooong time! 🙏
I too am on Lu177 (along with Ketruda as part of a trial) have yet to get scans. Great to hear Dondee has some positive results. How do you manage with the family in the days after the infusion? I get mine in Australia and it is outpatient but they tell you to limit time with others directly following the infusion. Does Dondee have it inpatient or outpatient? and have you noticed any effects yourself? Do you get a protocol for the family? thanks and all the best ND
Hi ND, for the first infusion we spent 3D/2N in the hospital and succeeding infusions is just an overnight. The nurses monitor the fluid input/output so my husband is advised to drink lots of water/liquids before and after infusion. Our doctor advised us that just to make sure he should keep a 2meter distance from us for about 2wks. So he sleeps in a separate bed. I noticed in the hospital, I got a bit dizzy when I sat close to his bed so I moved the sofabed further away from him. He also flushes the toilet 2x after peeing when he is at home for about a week. Something that we used to do when he was doing chemo so we just followed that.
All the best on your Lu177 and Keytruda protocol! Hope you get positive results soon 😊
In 2018, I had Psa 25 before commencing 4 shots of Lu177 at 8 weeks apart. Previous chemo had failed to lower Psa, and increased Psa instead.
But Psa hardly moved after 2 shots of Lu177, but sure went a lot lower after 4 shots, but then I'd been put on Xtandi after 3rd Lu177 to increase PsMa expression to make Lu177 more attracted to met sites.
In August 2019, all the many soft tissue mets in lymph nodes were no longer seen in follow-up PsMa scan.
But many bone mets were killed, and bone healing was seen. Psa continued to nadir of 0.32 in November 2019, and then Psa began to rise again and I booked in for more Lu177 in June 2020 when Psa was 17, and I had 5th shot 24 July when Psa was 30.
Psa is now 11, seems to be going lower, and PsMa scan showed I have only bone mets.
Next 6th Lu177 shot is scheduled for Sept 24. Then we wait, do a scan, and see what happens. I don't really know if I'll get remission.
Its possible that many microscopic mets may be forming while any live big mets are still alive. ( biggest found were size of a pea). If so, I could have an increasing number of mets, but all very small, but they'll all grow large given enough time, but there is a limit to how many Lu177 shots the docs will allow me to have. I was told one man in Germany had 10 shots, another man in a trial here had 7 shots. But what happens when no more Lu177 can b given?I recently gave a blood sample to a geneticist at my local Canberra Public Hospital and this will have its DNA analyzed for many things and then best PARP inhibitor chosen which acts sort of like chemo, but sometimes far better. I hope this happens, because so far my Pca has not mutated into different forms of cancer difficult to treat, according to PET FDG scan I also had last early July.
I was diagnosed 2009 with Gleason 9, inoperable, Psa at 6, so a lot of Pca for a low Psa.
I've never known when my time is up.
But today, it perfect spring weather I cycled 87km across town at average speed of 23.0kph and I felt like I was 37, but I am really 73. I cycled total of 233km this last week, and I am sure its keeping me feeling well, looking good, and I have BMI 22.5, Height 1.85M, weight 76Kg, waist 89cm, rsting HR 48, and no co-morbidities such as heart disease or diabetes.
My favourite food is a big plate of salad. I never eat junk, don't smoke or drink, and I've been like this since about 2004, when I did go all the way to allow my inner athlete to flourish and dominate how I ate and exercised.
I have not had so many side effects which so many other men get from whatever treatments Doctors give.
So while I feel very well, I am suspicious of my real condition because there may be still be hundreds or thousands of tiny mets present, with none big enough to cause any pain of change to QOL, But PsMa scan in august 2019 and then again in July 2020 did not show a huge number of new mets. Some bone mets I had at August 2019 hadn't had quite enough atomic bombing with Lu177, and just need more, a few others have been seen, but not hundreds or thousands, and my original mets from PG probably began years before diagnosis as Pca in PG grew to be Puff The Magic Prostate Grenade, and then began to slowly explode. Trouble is, mets grow to give other mets, so nobody can ever be sure what their Pca status really is, so some agent which works systemically is needed and which works against any mets that are too small to form an image in PsMa scan. Its the best scan it seems, according to what expert researchers say at PeterMac Hospital in Melbourne.
So, I have to book a train ticket from Canberra to Sydney asap, so I make sure I get a ticket.
I had thought of cycling up to Sydney; I did it a few times in a day on a bike with lights fitted, back in 1990s, its a 300km journey, and at average speed 30kph it takes 10 hours.
I been there done that, no need to torture this old man, he cycles to keep good fitness, come what may.
Thank you for sharing your journey Patrick. You are such an inspiration! Keeping fit and having a healthy lifestyle is really the way to go especially when fighting this pca monster! Its nice to hear that Lu177 did well on many of your soft tissue lymph nodes and bone mets. I do hope you’ll get the most from your upcoming 6th infusion.
Btw, my husband’s PSA slightly increased from 2.25 before 1st infusion to 2.85 at 4wks after 1st infusion. We will check PSA again before 3rd infusion and see what happens. We will also be doing pet PSMA scan after the 3rd infusion because I think its too early now.
All the best on your journey Patrick and keep on riding that bike 😊
I followed research being done at PeterMac in Melbourne in 2016 where 30 men were in first trial in Oz. Many got big reduction of countless soft tissue mets with 2 infusions, but bone mets took longer, and I knew all this before I had Zytiga and chemo. My local doc slowly learnt as we went along. Now Lu177 is supposed to be a systemic treatment. This means all mets of any size which do express PsMa will attract Ga68 to make a diagnostic image and then attract Lu177 for therapy, even if the size of met is small, and what I wonder about is if there is a limit on how small ?
Does Lu177 get to kill all tiny mets too small to make an image ? If not, then having Lu177 may be like mowing the grass which can continue to be alive and kept low, but not all fully poisoned to kill the all grass. It may explain why men need repeat doses of Lu177 and yet still end up having Pca grow back up to be a threat. And what about mets that have come from previous mets from PG? I may find out as time goes by.
I kind of hope genetics doc finds me suitable for PARP therapy and something else can be used in addition to Lu177.
I just have to accept what seems to be best treatment based on science, not that based on trial and error, like chemo.
How about discussing/ requesting a combined Ac225 with Lu77 PSMA treatment to get more “bang” before meeting a radiation limit. May deliver more results but also more side effects, especially permanent dry mouth. Tough decision to consider.
Hi Mateo, Ive already asked our doctor about Ac225 but unfortunately she said they still dont have access to that as of the moment. Either thats true or nobody in the hospital is trained to administer it yet. Our doctor was trained in Germany for the Lutetium177 protocol a few years back and she gets the meds from Germany as well.
Well Well.....It's wondeful to see all of you enjoying a picnic. Dondee looks as great as when I met him (you both) in person. I'm glad he's out of pain and can ride his bike. The kids look so cute and I had to ask Ana which one was you since you look like one of the kids. Keep enjoying life and of course Ice Cream. Manatiling maayos at inaasahan na makita ka agad.
Hi John! I am the youngest at heart among the kids so it can be quite hard 😅 Btw, we are waiting for you and Anna to come visit so we can have picnic with you guys! We will bring your chocolate chip cookie ice cream!
Hope all is well with you, Anna and Tripp. Magiingat din kayo palagi at sana ay magkita tayong muli!
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