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Lu177 PSMA UPDATE

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Posted 12/4/2021 3:38 PM (GMT 0)
Dear all

Few days ago we started our journey with lu177 PSMA, after a long wait, preceding brain surgery for metastasis in 2020 and two gamma knife surgeries for small dots that appeared, and carboplatin chemo we finally qualified for LU177. My father’s first infusion with LU was 3 days ago he is feeling fine now check up in 3 weeks.

I haven’t wrote for a while not knowing what to share but now I see light in the tunnel.
We (he) have/has been fighting this since 2004, the strength I see in this man and to be able to call him my father is beyond all gratitude.
I wish everyone the best.
Bianca

Post Edited (dime) : 2/17/2022 9:16:37 AM (GMT-7)

Posted 12/4/2021 6:51 PM (GMT 0)
Thats a long journey, here's hoping you have at least as long a time in front of your dad as well.
Your words are a great tribute to him
Posted 12/17/2021 3:27 PM (GMT 0)
Just a quick update
Two weeks after 1st lu 177 infusion psa went from 216 to today’s reading 160

Next infusion 28th of January it’s a 6 week cycle

All the best
Bianca
Posted 12/17/2021 4:54 PM (GMT 0)
Bianca,
Good on you for advocating for your father. Your support is very important.

I just saw my MO last week. He indicated to me that Lu177 PSMA treatment may become a major part of PCa management.

My best wishes for a strong outcome.
Posted 12/18/2021 12:04 AM (GMT 0)

Dear Bianca,

So appreciative of your ongoing, unfailing support for your father.

Your care and compassion is always so evident!

LUTEIUM-177 treatments represent new HOPE for the future. I am so thankful your father is receiving these treatments.

I feel these treatments are the wave of the future --- a new, powerful weapon in the fight!

I was so happy to read about your father's lowered PSA score! That signifies a successful step forward, in his treatments. I am GIVING THANKS reading your update!

Keep us apprised and updated on your father's treatments.

Sending my best to you and your father, from across the miles!

With my best to you both ~~~

CYCLONE - # Iowa State University
Posted 12/18/2021 2:28 AM (GMT 0)
The two of you have traveled a tough road and I am sure that your guidance and support has been most helpful.

From a strictly medical viewpoint, could you give us some details of his current treatment?
Did you (have to) go to Germany? Was your Dad briefed about the side effects? And exactly which PSMA-Lu177 drug did they use? How many cycles?

Hoping for a further drop in PSA in the near future.
Posted 12/18/2021 4:32 AM (GMT 0)
Hearts. Extra hearts even. You're in a hard place with an extraordinary person.
Posted 12/18/2021 10:07 AM (GMT 0)
It’s so heartwarming to read all of your posts.
Just a short history.
Diagnosed 2004 July;
Salvage radiation in the pelvic area 2005 May;
Hormon therapy with injection 3 months from 2005 -2016;
PSA rising since 2008/9 he was on docetaxel for 8 cycles till 2010
Abiraterone from 2012-2014
Lung metastasis showed up first I believe it was 2014 and since the lung metastasis until 2018 he underwent 3 lung resections. In this time he underwent 3 separate sessions of 6 cycles each of cabazitaxel. Last cabazitaxel was 2019 which was the hardest to tolerate with neutropenic fever almost after every cycle and being hospitalized 2 times. After finishing the last in beginning of August 2019 due to the toxicity of the chemo we as well as the doctor believed that the forgetfulness and the brain fog was coming from it. Late 2019 he was so forgetful and losing words with headaches that the doctor decided to refer him for MRI of the brain. January 15th 2020 the mri showed a big mass of 6cmx6cm occupying 3 areas occipital temporal and parietal area, surgery scheduled for 28th 2020, followed by WBRT ... then 2021 two gamma knife and carboplatine chemo used in brain and lung cancer 5 cycles.
All the treatments are done at AKH general hospital in Wien Austria as well as the LU 177
Since LU 177 is still experimental drug we had to wait. And finally December 1st he was called in for the 1st cycle out of 6 given in 6 weeks interval.
This is the translation of the papers at discharge (was discharged the second day of infusion)
1st cycle of [177Lu] Lu-PSMA therapy. Summary On December 1st, 2021 the patient received 8580 MBq [177Lu] Lu-PSMA-1 & T under concomitant antiemetic medication with ondansetron and nephroprotective hydration with 0.9% NaCl solution. Because of the known brain metastases, therapy with dexamethasone 4 mg twice daily was started. The therapy was well tolerated. The post-therapeutic full-body scintigram shows an accumulation of the radiotherapeutic agent in the known PSMA-expressing SBL
Posted 1/11/2022 4:57 PM (GMT 0)

Keep us posted, Bianca --- in this new year!

Hoping your father is doing his best, in the midst of treatments.

Caring thoughts sent to you both, from across the miles ~

CYCLONE - # Iowa State University
Posted 1/26/2022 11:09 PM (GMT 0)
Glad the LU-177 is proceeding well. I've done 4 LU-177 treatments at UCLA in a compassionate use program I'm blessed to have gotten into. See my post "LU-177 -My Next Treatment" for more info/specifics. Best of luck!
Posted 1/29/2022 3:09 PM (GMT 0)
Hi to everyone, hope all of you are doing well

Yesterday was my dad’s second infusion with 8080 MBq [177Lu]Lu-PSMA -I&T

He tolerated it well, he is now home and the blood works are okay the PSA before administering the lutetium yesterday was 171. We started with 216 in December (before the first Lu dose) than a week after was 160 now before the second dose 171. The doctor didn’t say anything in regard to it, has anyone of you has to say anything about the fluctuation.?
We will see him again end of next week for a check up.

Just a side note a week ago my father finished 10 days isolation due to having COVID, thank god 🙏 no complications, my biggest worry was his lungs (the 3 resections) and the milk glass on one … anyway again thank goodness that went well and he was well enough for the second dose of Lu.
Hoping for the best

Take care all
Bianca
Posted 2/1/2022 4:20 PM (GMT 0)

Hello, Dime ~~~

You are so committed to your father's well-being!

Thankful he has recovered from corona, so his LUTETIUM-177 treatments can continue!

He is forging ahead --- and your posts are a reminder that when roadblocks appear --- it's important to find resilience ---- and climb right over them!

Our loyal comrade, Steve55777, has been pursuing the LUTETIUM-177 treatments, as well --- and I feel these treatments are expanding the horizon line of the treatment landscape.

New treatments go from "uncommon" --- to "standard of care" --- because of the courage of patients like your father!

I was the first fellow at my clinic to try the "EARLY chemotherapy plan" with TAXOTERE, shortly after diagnosis. I was also the first fellow at my clinic to try ZYTIGA --- and I have been on it for about 75 months.

I was the youngest prostate cancer patient at my local clinic when I was diagnosed. My doctors have told me that the new medical approaches I tried, are now helping other fellows at my clinic.

My case has also been added to the database at Mayo Clinic, in the hope that the additional data will help patients who are now being diagnosed.

We're all in this together --- and medicine IS advancing!

Your father's STEP FORWARD into his treatments with LUTETIUM-177 will have a pathway forward for others!

The sharing of your father's experiences here illimunate new possibilities for other readers!

Keep in touch with us here!

My best to you and your father ~~~
CYCLONE ~ # Iowa State University
Posted 2/14/2022 6:18 PM (GMT 0)
Dime,
Just checking in on your dad's LU-177 treatments. Hope all is well. I completed my fifth treatment10 days ago. PSA has dropped continuously to current 2.14.
Let us know how he's doing. Thanks.
Posted 2/17/2022 2:51 PM (GMT 0)
Thanks Steve and Cyclone for checking in on us smile

Yesterday was my father’s check up two weeks after the second LU 177 infusion.
He tolerates it well with minor ups and downs in energy level. The PSA from the day of second infusion 171 and now two weeks after the infusion has dropped down to 92,9
So excited for this!!!
I wanted to mention that his memory is very much affected due to all of the radiation in the brain, he is forgetful and when he talks he neees time to formulate a sentence, we need to consult with neurologist to give us some therapeutic tools to cope with it and stop further deterioration.

Best to all

Post Edited (dime) : 2/17/2022 11:10:14 AM (GMT-7)

Posted 2/17/2022 11:54 PM (GMT 0)
Dime,
Great news! Congrats! The drop from 171 to 92.9 is amazing. Here's hoping that that drop continues.
One thing to keep in mind as you compare lab results: your PSA score comparisons need to take into account the timeframe between labs. This might seem obvious, but because my 6-week LU-177 cycle interrupted my usual monthly labs, I would look at one result and think, "this time it only went down 35%, not 50% like last time." But this time it was 3 weeks, not 4 or 5 weeks like the one before. Keep that in mind.
I've had 5 of 6 infusions and if I simply look at month PSA scores since I began, they average a 50% drop each month--which is miraculous in my opinion. Here's hoping that your father has similar results!
Steve
Posted 2/18/2022 3:54 AM (GMT 0)

Hello, Dime ~~~

I will echo our loyal compadre Steve55777's theme of expressing THANKFULNESS for the powerful impact the initial LUTETIUM-177 are already having in your father's case!

You might hear me CHEERING from afar!

I have followed Steve55777's posts and treatment updates. These newer LUTETIUM-177 treatments are delivering remarkable and stunning results.

I feel these treatments represent a new approach that has the potential to help countless fellows.

I'm thankful to hear that your father's treatments are showing signs of success.

We are all learning from your posts and updates --- and the posts Steve55777 is sharing with us, too!

I know how much a bit of GOOD NEWS can really encourage and uplift us, when going through treatments.

Please extend my best wishes to your father, Dime, and please continue to stay in touch with all of us here!

Thankful to hear your good news ~~~
CYCLONE - # Iowa State University
Posted 4/10/2022 9:46 AM (GMT 0)
Hello,

My dad’s treatment is still ongoing he has finished with the third cycle of lu 177 and should be starting the forth on April 20th. His PSA has dropped to 44,3 and will have a PET scan next week as a mid treatment check up. I don’t know if it’s going to be a PSMA pet scan or just a Pet CT.
What concerns me is that after the third cycle his cognitive functions have drastically diminished and his overall energy levels as well, he has mild anemia and walking has become difficult. Does anyone have any suggestions or word of advice for us, it is evident by the psa decline that the therapy is working but is taking a toll on his quality of life.

Bianca
Posted 4/10/2022 12:31 PM (GMT 0)
Bianca,
I think Mumbo observed for another member that this treatment provided a "reverse doubling time" in PSA. This seems to be the case for your dad, with his PSA roughly halving between treatments. I hope your Dad's doctors can figure out how to make this valuable treatment more tolerable for your Dad.
Posted 4/11/2022 6:40 PM (GMT 0)

mattam said...
Bianca,
I think Mumbo observed for another member that this treatment provided a "reverse doubling time" in PSA. This seems to be the case for your dad, with his PSA roughly halving between treatments. I hope your Dad's doctors can figure out how to make this valuable treatment more tolerable for your Dad.


Thanks mattam, I can see we observe this doubling reduction, wasn’t sure what you meant with “Mumbo”. I know Steve has also seen this with the PSA halving between treatments.
Posted 4/11/2022 7:16 PM (GMT 0)
Bianca,
Mumbo is a member of the forum.
Posted 4/12/2022 12:44 PM (GMT 0)

Hello, Dime ~~~

That's good news that the treatments are having a positive impact, in your father's case.

Make sure your father is staying properly hydrated.

With the anemia issues, have your father's doctor border a simple iron level test.

My doctor has watched this carefully for me --- it's called a "ferratin" test.

Due to treatments, my iron level has been low, at times.

I take a low-dose iron supplement and focus on iron-rich foods.

Be sure to make a list of your father's side effects, and take these along to the next appointment, and discuss these in detail with your father's medical team. Take notes --- and my doctor also types everything into a summary, which is then listed within my online medical account, through the hospital.

If your father needs a paper copy, you can ask for a paper copy that he can refer to, back at home. Sometimes, that is helpful --- seeing it "in print."

Let us know how the next appointment goes --- and how your father is faring.

Your devotion to your father and his well-being always SHINES THROUGH in all of your posts!

Thinking of you and your father, from across the miles ~~~
CYCLONE ~ # Iowa State University
Posted 4/13/2022 6:48 PM (GMT 0)
Hi Cyclone,

Thanks for always taking the positive out of the situation.
My dad is extremely tired and weak, and yes the doctors are checking his iron levels. Some weeks ago even though the iron was very low his energy wasn’t as bad as it is now when taking the supplements. I don’t know what measurements you use here we have a normal range from 7.5-31.2 and 6 weeks ago his iron was 2.1 now it’s up to 5.4 still not enough to reach the lower margin, but his overall energy and weakness have declined drastically the past two weeks.
Today he had the PSMA Pet CT at AKH and we see first the doctor mid of next week before the 4th cycle.

Bianca
Posted 4/13/2022 8:37 PM (GMT 0)

Hello, Dime ----

Stay vigilant, and keep asking questions, and seeking answers.

How is your father's appetite?

Sometimes, a nutritionist at the clinic called be asked to "step in" to recommend beneficial foods for oncology patients.

I'm thankful the next appointment is soon --- hopefully, you can accompany your father --- and bring that list of questions with you --- and take notes.

Sometimes, we have to be our own advocates --- and ask pertinent questions.

I see my main doctor every month. He knows I always have a question or two, without fail.

Be open and honest about your father's low energy & exhaustion & weakness. Ask, "What can be done to help him?"

Another thing my doctor and I do, each time now, as we are wrapping up each appointment --- we take a moment to discuss what we plan to talk about NEXT TIME.

I recommend this strategy to everyone, really. It keeps us on the "same page" --- and greatly enhances the quality of our visits together, at my appointments.

Let us know how things go, at your father's next appointment --- as your father's treatments continue.

I hope his energy level will improve, day by day ~~~
CYCLONE ~ # Iowa State University
Posted 4/13/2022 8:59 PM (GMT 0)
Thanks Cyclon for the advice, I always accompany my father at the appointments, I will make a list of all our concerns...
we have tried food supplements (even eggs from Japanese quail on daily bases they are supposed to be very healthy) changed the diet, bought an indoor cycling bike, nothing seems to help... in the past with all the chemotherapies I was able to get him back in shape between cycles but now I don’t see what else I can do.
Sorry for my desperation in this post, I am always positive around him and I do share all of yours encouragement words with him.

Bianca
Posted 6/6/2022 11:22 AM (GMT 0)
Dear all,
I have been occupied with my dad's situation for quite sometime now (extreme tiredness, weakness, low iron and low RBC and Hg, we had to use wheelchair most of the time), and we finally with the doctor's consultation understood that even thou the therapy is going in the right direction PSA 25.75 after the 4th round, its taking a great toll on his general well being. It was decided that after the blood transfusion on June 1st that they will administer the last Lu-177 PSMA infusion - 5th with 6430MBq [177Lu] Lu-PSMA, and the therapy will be discontinued. It was explained to us that in a month from now he will have his PSMA PET CT to evaluate the state as the therapy wont go to the final 6th infusion. Further they explained that in the future if/when there are signs of disease progression we can be again referred to the same therapy considering his overall health.
Now we are looking for him to recover and regain his strength without having the burden of worrying how the next infusion will be tolerated ....

all the best to everyone
Bianca
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