Lu-177-PSMA-617 update- (4 weeks afte... - Advanced Prostate...

Advanced Prostate Cancer

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Lu-177-PSMA-617 update- (4 weeks after 1st treatment)

Daddysdaughter profile image
16 Replies

My father has been doing ok. He has his days of feeling better outweighed with days of not feeling good. He no longer is experiencing the dry mouth, just bone and joint pain. He also has had some extreme fatigue. This could be from the combination of Lupron, lu-177-PSMA, and Xgeva. It’s pretty severe this time, he also has declining Hemoglobin requiring transfusions every 1-2 weeks. We have started B12 supplement as well to help With blood production.

His biggest issue now is electrolyte imbalances. I have been trying to figure out why he has had such fluctuations. We have been to the emergency room a few times to correct imbalances because he kept feeling weak and tingling in his extremities. The treatment states that it’s “rare” but maybe my father is one that is having this issue. His serum phos, potassium, magnesium and calcium have all been extremely low. Some dangerously low. TMI but he has had a few days of nausea and some diarrhea, but that was a few weeks ago. I’m beginning to think this is an absorbing issue. We have consulted nephrologist and his kidney function is good. I really think it’s a combo of prolonged Lupron, Xgeva that causes hypokalemia and hypocalcemia and prednisone. The other electrolytes are low because those are. I’m not sure but it worries me when potassium, phosphorus, calcium and magnesium are low. All normal cell functions rely on these electrolytes. When they are altered nerves can get damaged the heart doesn’t function well and there’s a long list of frightening things that can ensue. There is not enough info out there in Lu-177, the general medical field (ER) have no diagnosis except malnutrition when we go in. It’s just very Frightening and frustrating.

16 Replies
Grumpyswife profile image

Hopefully you can get some reassurance from others on here who have had the treatments.

Tall_Allen profile image

So he is supplementing those minerals but serum levels are not rising? Why is he still taking prednisone if he's not taking Zytiga?

Daddysdaughter profile image
Daddysdaughter in reply to Tall_Allen

Yes, he is still on Zytiga

Cladius profile image

What did the researchers say ?

Are they still going to give him the second dose Lu177?

Daddysdaughter profile image
Daddysdaughter in reply to Cladius

Yes, as long as his HBG is 10 he will get the treatment. We will correct the electrolytes before we go October 19th. They’ve been keeping a very close watch on him.

Cladius profile image

Hope to hear good news about him soon.

Fairwind profile image

What is the name of the trial he is in ? What location ?

Daddysdaughter profile image
Daddysdaughter in reply to Fairwind

Vision trial Omaha Nebraska with Dr. Nordquist

God bless!

Patrick-Turner profile image

Hi Daddysdaughter,

I can see your dad's health is not so good although his response with Lu177 indicates it probably has reduced Pca, but then all these side effects with low electrolytes have become a problem. I have read many reports from guys who had Lu177 and talked to one man older than me and not so fit and he had 6 x Lu177 infusions and was feeling well, and he didn't mention he had any of your dad's problems. Unfortunately nobody can predict exactly what side effects might occur. And if it was not known that he had a fragile condition before Lu177, then you might say we all know now that his condition was fragile.

I have heard so many good things about Lu177 that my oncologist has referred me to the doctor who does it here in Australia, and all this happened because the Docetaxel chemo seems to have had very little effect on bone mets and Psa has gone from 12 at start of chemo to 45 over last 11 weeks, so I feel the chemo has failed, and if I do not take a risk to have Lu177, then I will be dead far sooner than expected, with an end stage period bed-ridden with pain. I have nobody to care for me so an end game would mean QOL become zero.

I've been on ADT since 2010, and am taking predisolone daily for the whole chemo cycle without any side effects from either. But I am not taking Zytiga because it just stopped having any effect to hold down Psa, and it seems my bone mets grew bigger and more numerous while I was taking Zytiga and while it was holding Psa low.

The trouble with Pca is that the Psa does not indicate all things that are going on when the Pca gets into bones.

I also had 3 bi-monthly Xgeva injects which was too much, and I had a spot of lower jaw necrosis which gave slight pain for awhile, but that seems to have resolved. I don't believe medications to stop bone density loss do anything to stop bone mets growing. I once read a German study which suggested this.

But docs like to give it, but I only needed one inject for each 6 months.

If your dad's condition worsens, he might have to spend time in a hospital, because that's where usually there is care all day and night beyond your capabilities. I had days in hospital after chemo 1 and 2, one because I had fever symptoms with low white cells, and one because of back pains. But chemo 3 and 4 went OK and no added hospital stays, and rode my bicycle for every day after chemo 4, except last 2 days when it rained. So docs were somewhat amazed to see me doing so well, but the trouble is the chemo seems to have failed so far.

But the Psa rise for last 2 weeks was from 40 to 45, and I expected 40 to 60, so just maybe the Psa rise is slowing and might even go down, and I am having chemo 5 next week, and maybe chemo 6 in 5 weeks which could be just before I get first Lu177 infusion - if the Dr Lenzo agrees it to be the right thing for me.

I'm getting another PsMa gallium68 PET / CT scan next week, so I docs can see if all my bone mets are PsMa avid, because if they are not, Lu177 would be futile, and I might have to have Radium223. We also want to see what effect chemo has had on visceral mets in lymph nodes and in PG itself. Amazingly, my onco doc said Ra223 is available here if I wanted it. I don't yet know who does it here.

But whatever I have done to me will produce side effects and I cannot know just what they might be. But I did a 32km bike ride today OK.

I also had followup meeting with radiation doc here who showed me latest full body nuclear CT scan. I felt low for hours after, seeing all these white patches in my spine, and doc said that bone pain starts when the mets get large enough to weaken the bones so they begin to get micro-fractures. In other words, Pca weakens bones which begin to crumble.

So my docs, more than one, are keeping close eye on blood numbers and what my cancer is doing. I hope Lu177 does me good, but its all a gamble now, and I just cannot know the future.

I'd like to live another 10 years, but it just may not be possible to live more than 2 years, and I just have to accept whatever future happens while I do what I can to fight the cancer. Reality has to be faced.

Keep well, and love your Dad, and try to see that there is some hope he will improve. He might have to delay his next Lu177 infusions.

We are only humans.

All the best, Patrick Turner.

Grumpyswife profile image
Grumpyswife in reply to Patrick-Turner

Don’t forget that chemo resets Zytiga and Xtandi for some men so you may want to try one or the other and see if it works for you.

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

"Some men" for sure. But I had a friend who had 6 chemos, Psa went from 40 right down then back up and enzalutamide didn't do much, but he had Pca which initially could not be controlled by ADT.

So Zyt or Enz are maybe-maybe things....... But of course I am on ADT, with monthly Lucrin shots, but not having Zytiga since last April when it began to be useless, so testosterone production from adrenal glands has probably resumed, and there's enough testo for my Pca to grow, and the chemo has been useless so far, Psa from 12 to 45 over 11 weeks and 4 chemos. But rise for last 2 weeks was only 40 to 45, so maybe not useless, and maybe Psa begins to drop with Docetaxel, but we can't know yet, and I was allowed to go to Lu177 anyway, with first shot in 6 weeks maybe, after chemo 5, which is next week, and maybe after chemo 6 in 4 weeks time. I want Lu177 BEFORE the bone mets disable me with pain and get too big to ever be reduced enough for a good life to continue. Many men dither about and let bone mets become too big and with Psa very high, and just don't see there's anything else other than palliative care until death if they don't get anything else other than chemo. My oncologist said chemo would NOT work forever even if it did reduce Psa and the bone mets a lot. Sooner or later the Pca finds a way to defeat the chemo and kill a man. Other more powerful chemos have worse side effects, and afaik, Lu177 might have less side effects, and kill more Pca cells.

I want some action against my Pca sooner rather than later.

The doc here agrees with what I want, so I'll go with Lu177.

Patrick Turner.

j-o-h-n profile image

j-o-h-n <----<<< Fingers crossed. God Bless.

Good Luck and Good Health.

j-o-h-n Friday 10/05/2018 6:18 PM EDT

ARIES29 profile image

Hello Patrick & Daddysdaughter. I am in week 3 after the first infusion of LU-177 & feal good but am taking anti biotics for teeth problems so that might have an effect? Week 2 was fatigue & first week was.. Wow what happened?

My history is no chemo, the one & only luprin shot & 5 months of casodex left me with pins & needle sensation in feet & hands,brain fog,man boobs & all the other lovely side effects so i was lucky Dr Lenzo took me on board.

My opinion is they should at least advice people on Luprin not to operate machinery as falling asleep at the wheel is detremental to ones health also.

Keep on keeping on my fellow warriors!!

Scmaggi1 profile image

Your dad is lucky to have you. I know as a patient how rough this disease can be and I see the strain it has on my wife as a caregiver. Give yourself a pat on the back. How did his Psa perform after his Lu 177 treatment?

dadsdrdawn profile image

I am here for my father as well (with my mother) as we are all going tomorrow to set up the first infusion of Lu-177. Thank you for sharing your father's experience. I will pray for him and my dad too.

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