first dose Lu 177, Within 24 hours f... - Advanced Prostate...

Advanced Prostate Cancer

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first dose Lu 177, Within 24 hours from now. Butterflies are flying.

Costarica1961 profile image
60 Replies

Is there anything within my control that I can do to prep for this treatment. Its funny I am a self proclaimed Veteran of the cancer wars, although this very promising , seemingly last option I am the most nervous about. I have been subjected to a radical prostectomy, and enough radiation too make me glow in the dark, I have participated in two failed clinical trials one of which put me in the E.R, I have weathered 25 plus chemo storms, in addition hormone supressing drugs by the bucket, I have had out of state and out of pocket cost with the hope of buying or borrowing more time. The worst of all this is watching my commrades to whom I personally knew, pass on, I know I am preaching too the choir, and I know I am in good hands, maybe its the statement from my oncologist that, this is the only treatment left on the table. I suppose I should be grateful to be in this Position to have a last tretment option.

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Costarica1961 profile image
Costarica1961
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60 Replies
andrew61 profile image
andrew61

I had 8 Lu177 doses before it failed for me. Probably the easiest treatment to tolerate that I’ve had. Ihope it’s successful for you.

Costarica1961 profile image
Costarica1961 in reply to andrew61

Wow 8

Scout4answers profile image
Scout4answers

Be strong

Costarica1961 profile image
Costarica1961 in reply to Scout4answers

Thanks

GP24 profile image
GP24

If you have some Xtandi left, take that now. It should increase the PSMA expression and help with the Lu177.

Costarica1961 profile image
Costarica1961 in reply to GP24

Ironically I have been taking xtandi again for a few months. It was prescribed for hormone suppressing purposes. Then my number came up for this treatment.

GP24 profile image
GP24 in reply to Costarica1961

See this article: eurekalert.org/news-release...

Spyder54 profile image
Spyder54 in reply to Costarica1961

For those that didn’t open up GP24’s link (which is well worth reading), here is the key: “The intuition of the medical research team proved to be spot on. 'We were able to prove that administering enzalutamide resulted in a significant increase in the PSMA density on the tumour surface, even though the drug was no longer effective in its original therapeutic sense and was no longer being prescribed for that purpose,' explains Samer Ezzidin. Despite the fact that only ten patients were involved the study, Professor Ezzidin believes that the results are compelling. 'After administering enzalutamide, we observed a significant increase in PSMA density on the tumour surface in all patients in the study. This allows us to introduce far more of the radioactive therapeutic agent into the tumour cells and thus irradiate them from the inside with irradiation paths that are down at the micrometre level,' says Ezzidin. As a result, PSMA radioligand therapy will be able to treat prostate tumours more efficiently and more selectively than has been possible in the past (see the following report for more details: eurekalert.org/pub_releases...

hansjd profile image
hansjd in reply to GP24

Do you know if that applies to zytiga as well or just xtandi?

Costarica1961 profile image
Costarica1961 in reply to hansjd

Thats a good question. It keeps coming up xtandi in all I have discovered. Links etc

hansjd profile image
hansjd in reply to Costarica1961

I agree. I’ve only ever see xtandi mentioned. But not sure why one would help and not the other. Maybe someone here knows the answer.

GP24 profile image
GP24 in reply to hansjd

It should be an antiandrogen, based on what I know. I cannot rule out that Zytiga will also work but I'd rather wait for a trial to confirm this.

CurrentSEO profile image
CurrentSEO in reply to hansjd

jnm.snmjournals.org/content...

treedown profile image
treedown in reply to Costarica1961

We have had members here doing LU177 that were also prescribed xtandi. Let us know how the treatment went for you.

dhccpa profile image
dhccpa in reply to hansjd

Great question

CurrentSEO profile image
CurrentSEO in reply to dhccpa

jnm.snmjournals.org/content...

CurrentSEO profile image
CurrentSEO in reply to hansjd

yes jnm.snmjournals.org/content...

hansjd profile image
hansjd in reply to CurrentSEO

Current SEO - thanks for the link to the article and it's an OZ one at that !

dmt1121 profile image
dmt1121

You are pursuing all that is available to you and I hope you are enjoying every moment now because now is what we have. Joy can be hard to find in the face of treatment side effects, pain and depression but this is your life and it is not over!

I believe we must all seek as happy and healthy a life as we can, under whatever circumstances we are facing. Sometimes, it is simply not possible. Sometime, we just need to take comfort from family and friends and acknowledge their love for us. Love, in itself, is healing. If you can find the quiet and the pain-free time to meditate, I find this very helpful in pain management and my mental outlook. It is a reset and you can do it as often as needed. It may be prayer for you that has this healing and calming effect. These are things we can forget to do for ourselves sometimes.

For me, it is not how many people here have passed but whether they were able to live their lives to the fullest possible. We all know where we are headed, but it is up to us to decide what we do with our life along the way.

I pray for you to be healed in this new trial, that the side effects are minimal and that you may find joy and love on your journey. May your fears and pain disappear like fog on a sunny day.

Please let us know how you are doing. We care about you and what you are going through.

Spyder54 profile image
Spyder54 in reply to dmt1121

Saved. Words profound.

Costarica1961 profile image
Costarica1961

Beautiful words too take to heart.

Javelin18 profile image
Javelin18

I had three treatments, and other than inflammation from the dying cancer cells I had no side effects. It was much easier than any other treatment.

The treatment is easy, so don't worry. I hope your part of the 1/3 with the great response.

Costarica1961 profile image
Costarica1961 in reply to Javelin18

Thankyou. I am not as concerned about the treatment just the fact I was told there is nothing else on the table if this doest work. I am remaining optimistic. But have always had a Plan B to fall back on. Oh well I will get through this.

Javelin18 profile image
Javelin18

I understand. It didn't work for me, so I'm now in the world of trials. It does feel fundamentally different, than SOC or early access. No statistical data to lean on. I'm number 13 in the City of Hope CAR-T trial, waiting to see if my biopsy is PSCA avid.

Costarica1961 profile image
Costarica1961 in reply to Javelin18

My previous onc just went down there several months back. Dr Amerita Desai.

RyderLake2 profile image
RyderLake2

Hello, I agree with GP 24. Stay on the Xtandi (enzalutamide) even though it might not be working. For whatever reason, Xtandi increases the effectiveness of Lutetium.

Costarica1961 profile image
Costarica1961 in reply to RyderLake2

Ok still taking

Grumpyswife profile image
Grumpyswife

Wishing you the best of luck.

After reading all the treatments you have been through I am ashamed at being so worried for my husband’s first Taxotere chemotherapy.

Costarica1961 profile image
Costarica1961

No shame we all have our own journey. Good luck, moving forwrd

j-o-h-n profile image
j-o-h-n

Costa, May your treatment be rica in cure......... As far as glowing in the dark from radiation, don't sweat it until you're fully magnetic..... watch those paper clips....Good sailing mi amigo.............

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 02/22/2022 6:41 PM EST

Costarica1961 profile image
Costarica1961

Thankyou j-o-h-n. What would this forum be like without you.

TeleGuy profile image
TeleGuy

Strangely, you don't feel a thing as the radiation goes into you. You may feel a little nausea, may feel some pain if you have bone mets—both are indications that the treatment is working and hopefully will give you some optimism. I did 5 treatments and went 2 years before recurrence. All the best to you.

TeleGuy profile image
TeleGuy in reply to TeleGuy

Whoops, I didn't answer your question: prep by being well hydrated.

Costarica1961 profile image
Costarica1961 in reply to TeleGuy

Thankyou so much. I have no concern about the infusion process. Although its good to know. Mainly the whats next if this doesnt work. I know some people might say, just focus on the treatment at hand. I have always have had a plan B up to this point. How long does the infusion take.

Cooolone profile image
Cooolone

Good Luck with your treatment!!!

Costarica1961 profile image
Costarica1961 in reply to Cooolone

Thankyou back at cha

Janhpr profile image
Janhpr

Hi Cisrarica1961 my husband is waiting for his appointment for his 1st Lu 177 treatment, we are having to pay for it ourselves, but life is not a rehearsal and what price do you put on life. He could have R223 on the NHS but think this is our Plan B. We are hoping Lu 177; will give him more time, and less side effects. the Oncologist did say it might not work but would know after 2 treatments. What is your plan B, We both wish you the best outcome from your treatment., we know the butterfly feeling.

dublin1717 profile image
dublin1717 in reply to Janhpr

Where are you having it done????Best wishes all goes well and it works to give him more time.

Costarica1961 profile image
Costarica1961 in reply to dublin1717

OHSU. Thankyou

Janhpr profile image
Janhpr in reply to dublin1717

Hi Dublin 1717 having it done at Genesis Windsor

rosatt1 profile image
rosatt1

I hope the treatment has success.

Costarica1961 profile image
Costarica1961 in reply to rosatt1

Thankyou

dublin1717 profile image
dublin1717

Hi Costa Just caught up on all your history.

I check in here every day to catch up on all the guys. My husband had RP 20 months ago and his Psa has now started to rise. Learning as much as I can from you men to help us with this war.

Glad to see you have obtained the Lu 177 on home soil and didn’t have to travel.

Don’t see it as the last resort. If it doesn’t work you are the best man for the job of getting on a trial. I can hear your zest for life so clear. Hopefully this will work though and give you a positive outcome. I’m following you now all the way from Ireland and will keep you in my thoughts and prayers. Keep us all posted on how things are going Costarica.

Vic ☘️

Costarica1961 profile image
Costarica1961 in reply to dublin1717

I will thankyou, an hour away from infusion

Ramp7 profile image
Ramp7

The mental anguish can be the most difficult part of this dance. Is the cup half full or half empty? I leave shortly for a 3 hour drive for my second LuPSMA treatment today. Positive vibes shall be sent your way.

Costarica1961 profile image
Costarica1961 in reply to Ramp7

I am here doing labs after a 3 hour drive. Good luck to you

Cosmo3 profile image
Cosmo3

Lu177 is not your last option. AC225 is available also. I had to doses of LU177 and it failed for me and I have high PSMA expression. They switched me to the stronger AC225 and it appears to be working so far. I had 2 doses and PSA went fro 1580 to 186. Just had another F18 PET/CT scan and waiting on the results.

Costarica1961 profile image
Costarica1961 in reply to Cosmo3

Best of luck, I hope it works better than great

CurrentSEO profile image
CurrentSEO

Costarica1961,

Good luck with your treatment by Lu-177!

My first Lu-177 also tomorrow in Austria.

Abiraterone works the same way as Enza for castrate resistant by increasing PSMA expression.

Here is the reference jnm.snmjournals.org/content...

However for castrate sensitive it decreases (!) PSMA expression, that is why I stopped Orgovyx after 2.5 months on advise of RO - one month before Lu-177 treatment.

Costarica1961 profile image
Costarica1961 in reply to CurrentSEO

Thankyou good luck

bubbles48 profile image
bubbles48

I am there too! I understand, but although I have plenty of PSMA according to the scans, it appears that I will not get the treatment because of the slowness of the FDA or the like. I may be even put on hospice. My only alternative seems to be chemotherapy. Chemotherapy has been rough. I had ten sessions of docetaxel.

Costarica1961 profile image
Costarica1961 in reply to bubbles48

There are some clinical trials starting up. I dont know all the links like these other guys. The best to you.

Rickmartin1948 profile image
Rickmartin1948

Good luck Costarica, you have never given up in your long journey and you will not give up now. Lutetium can work on you and your mind should solely focus in using all its power to make this process successfull, and not thinking what if. I know from my experience that it is very difficult not to wonder over what if, but put all your might behind Lutetium and all the energy of this glorious group is with you. Good luck and keep your faith up. And it is true as somebody told you, there is Actinium too!!

Costarica1961 profile image
Costarica1961 in reply to Rickmartin1948

Thankyou youre encouraging getting LU as I text.

Rickmartin1948 profile image
Rickmartin1948

Go Costa GO!!

Brysonal profile image
Brysonal

Thinking of you.. It is nerve racking but I’m back working full time this week, Went to football, out with friends Friday and Saturday night and even had Sunday afternoon delight (with help from a little blue pill) 18 days out of 3rd LU-177 (4 weeks inbetween for me) . Given I commuted countries too I can’t complain and fingers crossed for your response too.

Costarica1961 profile image
Costarica1961 in reply to Brysonal

Wow, life is good.

This APC is brutal to us all in every way. Hang in there Costa ! If you’re talking about guys dieing here I agree. Over four years here it’s like a dam war zone . . PTSD of sorts . My support and prayers to you ! 🙏

Costarica1961 profile image
Costarica1961 in reply to

I hear you, they dont call us warriors for nothing

in reply to Costarica1961

Let’s get you back to pura vida! Just Not battling self is a win . You’ve got us all here pulling and praying for you ! You’ve had many hits . But we’ve got to ride this horse til we can’t ride it no more! Get thru it! Go Rams! 🙏

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