Back to plan B - No longer chasing Lu177

[Yadifan]

Our next step is Xofigo.

Hubby had been through 10 sessions of docetaxel in 2021 where PSA went down to 1.1 (previously 117 at start of chemo). He got a break from it for 2 months, but it climbed back up to 46.8 and had to go back on docetaxel again. It didn't work as well as last time - his PSA never got below 24. He's had an additional 14 sessions this second time around with his PSA climbing with every session (the last four: 49.01, 59.06, 65.64 & 78.69 yesterday). We changed MO's a couple of months ago. Our previous doc referred us as he didn't know what else he could do for us. Our new doc felt Xofigo would be a better way to go. But we all pivoted when Lu177 was approved by FDA. He felt continuing on with docetaxel until we could get Lu177 made sense. Until it doesn't. The supply issues etc etc with Lu177 have made this feel like it could be months or longer. Our MO's concern is being able to receive Lu177 after Xofigo. There seems to be uncertainty with how long you need to wait between those 2 treatments. He thought it would be a year. If at all. There's still Jevtana that we haven't tried. Our MO would rather save that for use after Xofigo. CT scans and bone scans will be scheduled again next week. Just had them in January. Metastatic throughout the entire skeleton but no organ or soft tissue infiltration.

Was on abiraterone and then Xtandi after that failed. Didn't get much time out of either of those. Still continuing with Xgeva & Lupron every 3 months.

He has tolerated chemo, although it's been cumulative and his "bad" days have been increasing harder on him. My hope is that he'll tolerate Xofigo well. I know we'll have to watch his blood counts through this. We've had genetic testing through Foundation One twice. Most recently a couple of months ago. No actionable mutations were found.

Any feedback on this plan is appreciated. Thank you my people!

[Tall_Allen]

I'm not a big fan of saving things for later. Most medicines don't work as well later, and side effects are worse.

Jevtana was specifically designed for when Taxotere stops working - why wait? In fact, discuss adding carboplatin to it.

Provenge?

His MO is right that Xofigo use will preclude Pluvicto. It shouldn't, but it does. In fact, there is a clinical trial in Melbourne of combining them. If he has principally bone metastases, Xofigo is a good choice, perhaps even combined with Chemo and Provenge:

prostatecancer.news/2021/02...

[Yadifan in reply to Tall_Allen]

Thank you TA!

This has been a difficult crossroad for us. So far our treatments have been the next best thing to do. Months ago I felt that Xofigo would be the next best thing, but now I'm hesitant. In my quest for information, I end up reading so much of what I don't want to know.

I will ask about adding Provenge or carboplatin to Jevtana with our MO next week. And see if we can make the next best decision together. I appreciate your knowledge always!

[Seasid in reply to Yadifan]

I may have far in the future carboplatin. Degarelix and every 4 week depot testosteron injections (they will work one week) into my each buttocks. My understanding is that is BAT plus carboplatin. I don't know much about it but my doctor said that could be an option in the very far future. I believe if the testosteron injections work well they could be continued without the carboplatin. Sorry if my information is not correct or not complete but at this stage I don't need to know more. Maybe you need to have some genetic testing for this trial if it is a trial. Contact st Vincent's Hospital in Sydney for more datails or maybe peter Mac Callum in Melbourne? Maybe you can find about this more on the internet at the clinical trials site. Hope you will consider everything.

[RyderLake2]

Hello, Can you afford to go to Germany or elsewhere for Lutetium treatment? Also, is hubby able to withstand international travel? Lots of information on this site regarding treatment in Europe, India, Australia, South Africa and several other places.

[spencoid2 in reply to RyderLake2]

I was thinking of going to Germany (my Father lives in Paris (yes Father is still alive) and a TGV train ride to Germany would be possible and my Father offered to pay) but it seems the shortage of Lutium 177 is worldwide, not just in the US. Seems strange to me and I would love to be corrected on this.

[Yadifan in reply to spencoid2]

I'm wondering the same. It does seem like a global shortage. I too would love to be corrected on this.

[Yadifan in reply to RyderLake2]

Thank you Ryder. I'm not sure he can handle an international flight. And I'm not sure about global availability of Lu 177. We were so excited when FDA approved it for use. And still are. I know that in the near future it will be SOC for many. It seems out of reach for us right now.

I do remember a post where the member detailed his whole trip to Germany for Lu177. The cost of air fare, where they stayed, ate, how long they stayed, what it all cost along with the cost of treatment. Amazing.

[Hidden]

The last 10 years of prostate cancer treatment progress have shown that the earlier a drug is used, the better it works. The benefits of early use of drugs has been proven in many clinical trials.

Based on those results, saving treatments for later doesn't make sense.

My doctor has the same concern about doing Xofigo and that being a limiting factor for LU-177 treatment later because of the accumulation of radioisotopes in the bone.

If it were me, I would go for Jevtana now. Just my opinion, I'm not a doctor.

Also, many people report easier side effects with Jevtana compared with Docetaxel.

[Yadifan in reply to Hidden]

Thank you Samnabe56.

It sounds like so much chemo...but Xofigo won't be much of a treatment vacation. We have scans first and then a decision. It's a tough one. I appreciate your input. Xofigo being a limiting factor for Lu177 is our biggest concern right now.

[Hidden in reply to Yadifan]

Yeah, it's a little bit of a dilemma. I'm thinking about what I would do in your situation (I'm getting fairly close to it, actually).

I think what I would do is go for the Jevtana and if it works, do it as long as it keeps working. After it becomes ineffective, I would see what the situation is with LU-177 and then make a decision about it then. He'll want to get the PSMA PET scan of course to check how PSMA avid he is. It looks like LU-177 is the better of the two treatments (Xofigo vs LU-177), but you have choose from what's available.

Wishing him the best.

[Yadifan in reply to Hidden]

Thank you Samnabe56. This makes sense to look at choosing from what's available. We were scheduled for a PSMA PET but insurance denied it. Our MO was going to challenge it and feels he can in the future, but if Lu177 isn't available it's kind of mute at this point. I'm wondering if the scan requires a fight with insurance, what kind of hell are we looking at to get Lu177 approved by insurance.

Wishing you all the best also. Wishing you time & hope.

[RyderLake2]

Hello, Try the Department of Nuclear Medicine, Saarland University Medical Centre (Universitats Klinikum de Saarlandes or UKS) in Homburg, Germany. Small city with a big hospital. They are a little cheaper than other German sites and not reluctant to use Actinium if required. The head of the medical staff is Dr. Samer Ezziddin. Try an email to "[e-mail]". All the doctors and most of the nurses speak English. Good luck!

[Yadifan in reply to RyderLake2]

Thank you for this! I will email them. I don't think he's up to travel, but it sure wouldn't hurt to get more information on this.

[j-o-h-n]

That picture is worth a thousand words.....Right out of a love theme movie poster....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 05/20/2022 3:19 PM DST

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

Ha...yes it is! I think this picture was taken right after I asked him "what do you want for dinner" and he said "I don't know...what do you want?"

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

Alors nous nous sommes mis d'accord et avons fait l'amour sur la table de la salle à manger...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 05/20/2022 7:58 PM DST

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

Oh my goodness...this cracked me up! Thanks for the laugh!

[Hidden]

We’ve had a similar journey. Zytiga worked for about 2 1/2 years. When it quit working, the doctor switched him to Xtandi. I wasn’t thrilled because I knew it would fail quickly. It did. And also he couldn’t be on a full dose. He had to go on a half dose because of the side effects. But then he gave him Jevtana and kept him on the Xtandi the half dose. Took me a while to even find the trial that was looking at that. He’s been off the Jevtana for two months now after receiving a six month course that took about eight months because of some low blood counts. He’s doing well and his last PSA was .16. It’s continue to drop since we stopped the Jevtana. He remains on the half dose of Xtandi. So we’re hopeful it will buy him some more good time.

[Yadifan in reply to Hidden]

Wow! This is encouraging! Thank you for the reply. We did plan on asking our current MO about a rechallenge of Zytiga. With whatever treatment we end up with.

I'm hoping you have a good long time with Xtandi!

[middlejoel]

Wondering why you opted to repeat genetic testing.

[Yadifan in reply to middlejoel]

The 2nd was about a year and a half after the first test. MO wanted to see if there was any mutation.

[Yadifan]

Thank you for replying. I was wondering if obtaining Lu-177 was a global problem.

I'm not sure if traveling that distance is a possibility. I did mention it to my husband, who at first thought I was kidding. A two hour car drive to our MO can be difficult. But he did say we can add that to our list - I think mainly to make me happy. I too think it's a better option. Just feeling out of our reach.