Things have gone from bad to worse; need some hope and guidance.

[fmoser]

Hi,

Oh man what a terrible 10 days it has been. I wrote a couple weeks ago how my dad didn't seem to be responding to his Docetaxel re-challenge.

"Before his first round of chemo Dec 20- PSA: 182 ALP:518 LDH:357

After his first round of chemo Jan 9- PSA: 281 ALP: 916 LDH:759

After his second round of chemo Jan 30- PSA: 504 ALP:769 LDH: 561

10 days after his 3rd dose he fainted and was hospitalised and diagnoses with A-fib. He was put on a beta-blocker and he has to give himself a blood thinner (injection) each day for 30 days."

After third round of chemo Feb 21- PSA: 670 ALP: 898 LDH: 848"

He had scans done the day before his 4th round of docetaxel and was told to go ahead as his Hb was at 80 and we were meant to discuss next steps 5 days later.

The night after his 4th dose, my dad had gross hematuria. We brought him to ER and his Hb was 50 and his blood pressure was really low. They gave him 3 units of blood but due to the anti-coagulants he had been on for the a-fib and a tumor invading his bladder the bleeding didn't stop. He was transferred to Calgary and they did an emergency TURP to resect the invading bladder tumour and stop the bleeding. He was given a total of 10 units of blood over the last week. He also a second surgery (bilateral nephrostomy tubes) as his kidneys were injured during this process. He is finally stable and his kindey function is normalised now which was key for continuing with any treatment. He was having decreased kidney function since Dec so the kidneys are now working very well. As well as most of the tumor invading his bladder was removed.

During this time in hospital, he had a follow-up with his oncologist. The scans show his cancer has metastasised to his liver (10-15 tumors) and diffusely through his skeleton as well. She said he has a bad cancer and she's worried about how aggressive it is. She didn't say she has no hope but she said she needed to tell my dad his cancer is bad and she's worried. She mentioned sometimes Docetaxel takes a while to kick start but he is resistant to it and she's worried about his bone marrow reserve. She wants the tissue removed from his recent surgery to be analysed to see if he has a neuroendocrine mutation. The plan going forward is to see if he can start cabazitaxel in 3 weeks, if the neuroendocrine variation isn't present. Since we live in Canada we are not able to get lutetitum 177 treatment. She recommended we travel to Burnaby to get a PSMA-PET scan (they are booking into April and seem to be the only place in Canada to get one) and then travel to Germany or the US for lutetium treatment. I feel like we have kind of been left to fend for ourselves now that there isn't much left in Canada.

I asked her about adding carboplatin to his chemo- she said no.

I asked her about provenge or immunotherapy- she said that's not for this stage

I asked her about PARP-inhibitors- she said his genetic testing is negative.

We are all heartbroken as it feels like we are in a very bad situation. I'm trying to hold onto any hope. If anyone has any suggestions or has been in this situation I would love to hear from you!

I also wanted to ask if the biopsy does come back being +'ve for the neuroendocrine variation, what then? Does Lutetium DOTATATE help?

Has anyone used booking health to go to Germany? We like the look of it because it includes insurance for if complications arrive.

Please keep us in our thoughts and prayers. My dad is my world and I want to do anything I can to help him get through this. He has told me every day he wants to fight!

Picture: My dad and I in Africa on Nov 15, 2022. Hard to believe things have got so bad since then. I pray we can have days this like this again. We went there to celebrate his 70th birthday. One asshole doctor told me once, "your dad will likely not make it to 70" when he was diagnosed at age 65, we were all so happy he made it. I hope we can have more time!

[Tall_Allen]

I'm sorry to hear about his recent setbacks. Sometimes at this stage, the cancer no longer expresses PSMA, so Pluvicto can do more harm than good. It is doubtful that he has neuroendocrine PCa with PSAs that high. I'm hoping the Jevtana will give him some relief. Maybe email this about adding carboplatin to Jevtana, although his kidney function, liver toxicity, or bloodwork status may preclude it:

ncbi.nlm.nih.gov/pmc/articl...

[fmoser in reply to Tall_Allen]

Thank you Allen. What’s the ideal time for PSMA expression. What’s the rational with expression stopping?

[Tall_Allen in reply to fmoser]

This is all I know:

prostatecancer.news/2019/12...

[fmoser in reply to Tall_Allen]

You are right, the biopsy came back negative for neuroendocrine differentiation.

[Hidden]

Hello fmoser! He’s going through some certain hell right now . Those liver metzs are what bothers me . That is very serious . I’m sure that you already knew this . I’m glad that you’re by his side! The picture is so wonderful . Cheer him up anyway possible .Don’t dwell on any bad words from the doc .. take it a day at a time . I’m sorry for the rough circumstances 💔🙏

[fmoser in reply to Hidden]

ya, google tells me liver Mets means the worst prognosis. Then to hear he has so many is so devastating. Do you know if any treatment has been successful for liver Mets?

[Hidden in reply to fmoser]

Darned Google . Unfortunately ,It’s not lieing . It serious as it gets . Once in these organs it’s bad . Keep the faith! Lots of love for dad ! 💔🙏

[tango65]

Lu 177 PSMA treatment in Germany cost around 12K to 20K if dealing directly with the hospital. It is much cheaper than in the USA which is above 200K.

Lu 177 PSMA may work if the mets have a SUV value around the SUV of the liver, there is not bone marrow infiltration by the cancer and also mets which do not express PSMA. To find out about this he needs to have a PSMA PET/CT and a 18F FDG PET/CT.

If there is bone marrow infiltration Lu 177 PSMA may cause bone marrow depression with all the possible complications.

In discordant cancer presentation, the results may be poor since only the PSMA positive mets are treated and meanwhile the negative PSMA mets keep growing.

[Djangler in reply to tango65]

Is LU177 available in Germany, given the production/supplyh chain issues? Here in the US, they tell me the supply issues won't be worked out in time to treat me. Maybe a trip to Germany is in my future?

If not Germany, is there anywhere in the world where LU177 (or AC255) is readily available?

[tango65 in reply to Djangler]

Yes in Turkey, where the Mayo Clinic send patients.

This is the contact person

anadolumedicalcenter.com/en...

[Djangler in reply to tango65]

Were they affected by the earthquakes?

[tango65 in reply to Djangler]

They don't say anything in the web pages. These are 2 large modern hospitals.

[Djangler in reply to tango65]

Thanks, that's a valuable resource to keep in my back pocket.

[tango65 in reply to Djangler]

Wish you the best of luck!

[LastMohikan in reply to Djangler]

the Hospital is in the border of Istanbul which is not effected from Earthquakes. the erathquake happenned in the south parth of Turkey near to Mediterian sea. My RO and MO are in that hospital and they are part of John Hopkins Medicine.

thanks. Umit

[Hidden in reply to Djangler]

Azerbajdan and New Dehli, India. 1/3 of the cost in Europe.

[Djangler in reply to Hidden]

Thanks to everyone for the info. This place is awesome! My next step is sequential BAT/enzalutamide but it's great to know there are radioligand options down the road.

[nobaday in reply to tango65]

Tango 65. What’ does the 18F FDG PET/CT show. Cancer cells that are not PSMA positive?

[tango65 in reply to nobaday]

Yes.

[Gl448]

Your news breaks my heart, but that beautiful picture of the two of you warms it. You look very much like you father.

I have no medical advice to offer, the smartest people in this forum have surest done that.

All I can offer is my best wishes that something can be done to address this dreadful turn. Listen to TA, he’s fantastic.

[Mw921000000]

Gosh I am so sorry he is going through this nightmare. I wish I had some advice to give but I’m not as knowledgable as others on here. You are both in my thoughts 🙏🏻❤️. I am sure you are not out of options. Try not to let your thoughts spiral

[Collarpurple]

🥲❤️🙏❤️

[nobaday]

I am on a Lu177 trial PR21 in Vancouver BC and have had 4 out of 6 Lu177 infusions. It compares Lu177 to docetaxel. The Lu177 is working.

Otherwise I would have gone to India New Delhi where cost is around US$6500 per Lu177 infusion. Email her at [e-mail] to book a date. Pretty easy. Plus the zLu177 comes from Germany. You want to know if PSMA avid before travelling abroad so going to Burnaby a great idea. What is the name of the Burnaby clinic?

I heard booking health is good but expensive. Side effects of Lu177 are typically low. I have some dry mouth and a bit more fatigue.

[Willydad in reply to nobaday]

Burnaby clinic is called Initio Medical Group

[fmoser in reply to nobaday]

THat's wonderful you were able to get into a trial here in Canada. Do you know if they are accepting patients into it still?

[nobaday in reply to fmoser]

look up OR21 trial for detesils. Says still recruiting. Contact Kim Chi’s office at BC Cancer 604 877 6000 ext 2746

[nobaday in reply to fmoser]

PR21

[hansjd]

Another option for Lu 177 is Australia if the PSMA scan is good and the FDG scan is negative. The cost is about the same as in India apparently. Google Theranostics Genesis Care for contact details. They are in Perth and other major cities in OZ.

[Bronzee]

Have faith, and not everything the docs say are exact.. while the liver mets does not look good , you can always hang on to hope and pray for a miracle. Remember, you were told your dad will not live up to 70 but he is still with us.. stay strong, keep him in good spirits. Prayers for your Dad.

[Mecrispy77]

🙏🙏❤️

[Willy9173]

Plovicto Lu177 is offered in Montreal but at patient cost not yet covered by provinces but approved by Health Canada

[fmoser in reply to Willy9173]

Do you know where and how long the wait is to access?

[Willy9173 in reply to fmoser]

Sorry I don't but suggest you call Quebec cancer Institute or your oncologist should be aware I think we are looking at about 27,000 cad a session perhaps Alberta would cover some or if you have separate insurance. I am looking into this as we are in Ottawa and it will be last resortQuebec also has most facilities in Canada for Psma tests. Good luck

[MiaAmia]

Pluvicto/LU-177 is approved for use in Canada. We were told by our MO in Ontario that SOC is post chemo and it is available, although not sure if the current shortage is causing an issue.

[fmoser in reply to MiaAmia]

Yes, it's approved but not accessible yet. They kept telling us it's coming, but now it's too late and we were told we have to leave the country to access it as it's not here yet. I recently found out the dye for the PSMA-PET scan is not health canada approved so in order to get the scan in Burnaby they need to apply for approval for each case. Sad that we are so behind here!

[MiaAmia in reply to fmoser]

This is contrary to what we have been advised at London Health Sciences Centre; however, we are not currently in a situation to be actively pursuing it. This will certainly be a question for our MO at our next appt. Note that people I know of in Europe have had their infusions delayed because of the shortage of the drug, so travel may well be moot unless you can access it. I wish you and your dad well. Thank you for the information.

[fmoser in reply to MiaAmia]

No problem, ya I think I was surprised when actively pursuing the treatment. I guess I learned there is a lot more involved than just having drug approval, It's also about having the personal trained, and the scans in place to evaluate the effectiveness of the treatment. I find it strange how Luteitium is health canada approved but we can't really access it, and the dye for the PSMA-PET scan is not approved. I feel like those two things have to go hand in hand, I wonder how long it will be for Canada to have these treatments and scans available in each province. It's awful to have a location bias dictate what treatment you can access.

[MiaAmia in reply to fmoser]

Everything we've been told is that the PSMA scans are available in London and I know the training is here, so I'm very curious. The location bias is actually because healthcare is a provincial matter. If our premiers and their governments don't pursue/allow it, it doesn't happen, even if it's approved.

[anonymoose2]

All I have to say what a beautiful picture of you 2 and some wonderful memories you will cherish when the good lord takes him to his forever home. 🙏 for you both during this difficult time.

[Blueslover]

God Bless you and your dad. Hope you find something to make him feel betterHugh

[Kayakbob]

Pluvicto treatment is also available in Mexico City - might be an easier trip than Europe or India... Hospital MedicaSur has the program running. They seemed quite good, had all workups done virtually, and 1 hour interview with the doctors running the program. I was ready to start treatment with them when my insurance approved treatment in the US, which was much more convenient (only 1 hour away from home).

[Kayakbob]

Here's a link:medicasurmexico.com/en/nucl...

[Margoto]

So very sorry that you and your Dad are going through this. I know personally how serious the situation is. I know you both want to fight. He is probably more worried about doing what you need at this point. Please don't continue to put your dad through more sickening chemo. That is where we are at now and it took a while to be at peace with accepting the situation. Don't be angry at the first doctor, he was being honest with you...maybe not very tactfully though. No doctor can predict the exact survival time as everyone responds to treatment differently. He was trying to prepare you.

[j-o-h-n]

Please DO NOT give up..... You can beat those tiny little bastards.....

Remember God Is on your side....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 03/07/2023 10:52 PM EDT

[fmoser in reply to j-o-h-n]

Thank you John, I needed that ❤️🙏

[Todd1963]

Sometimes your the windshield and sometimes you are the bug. I often wonder if the time comes when nothing seems to be working what my course of action will be. All treatments for advanced disease are palliative in nature. There comes a time when one must weigh quality of life over quantity. It doesn’t sound like dads quality of life is worth living. I hope I don’t have to decide this for a longtime but maybe when the time comes I would rather be with my family and be made comfortable rather than killing myself to kill an invader that won’t die. God bless you and your family. My heart goes out to you. I watched cancer eat my dad. Nothing worked! In hindsight I wish we had simply made him comfortable and enjoyed the time we had left with him.

[Hidden]

He will be happy to get out of the hospital . With your strength and professional training you are the perfect care giver for him . He can lean on your strength . God bless you both!🙏❤️

[Hidden]

Stay strong yourself young loving daughter . With your love he’s never alone in this . Thank you❤️🙏

[tuta1960]

I am sorry to hear about this, I am sooo sorry. It s a nightmare. I can only wish you not to lose hope. Dear God, I m so sorry! Hope and pray for the best!

[Nely314]

so sorry to hear what you father is going through. As a long shot have you ever heard of Fenbendazole, there are reports it may help when all else fails.

[Acommentator]

Oh dear this sounds like what just happened to my 90 year old mom (2x) minus the fact she doesnt have prostrate cancer. She got 2 nephrostomy tubes because the bladder mass obstructed her ureters and urine backed up into her kidneys causing AKI; first time also had hematuria so needed blood transfusions. Second time had backup, as tubes got clogged and were replaced. Also had TURBT but still lost some blood, bp went down so needed transfusions. Tube got dislodged in the hospital which they replaced after making her wait 4 days until the Eliquis was out her system. She was on Eliqius because she has afib and congestive heart failure. Anyway CT scan showed cancer mets in lymph, through bladder, in pelvis, some in liver and lungs. Not sure what's can be done next as she's 90 and has insurance problems. Still waiting for results from biopsy. Nephrostomy tubes need changing every 2 months. Hopefully she can try Keytruda. She's not yet been discharged and unfortunately bladder mass is bleeding again and being retained so cauthetization and Turbt only partially worked, meaning needing straight catether every few days.