Decision needed

Hi folks, hoping for help with a difficult decision. I am caregiver for someone who, on diagnosis five years ago, was found to have bone lesions throughout the torso from pelvis to skull. Also lymph node involvement, but no organ involvement.

Treatment over the last five years has pretty much knocked it out of the lymph nodes, although he has had some spread of lesions in the skeletal system.

His PSA at diagnosis was over 1500. It got down to .01. It is still below 1 but the Zytiga that kept it at bay for 2 1/2 years failed. He tried a trial and Lynparza, but they both failed. He’s now on Xtandi, which is working, but we know it’s a parallel drug to Zytiga and will likely fail fairly quickly.

The dilemma is our next step. I was leaning toward Jevtana. His oncologist wants to try AMG 160. This is the BiTE trial at Emory Winship. He would either get just the AMG 160 or AMG 160 with Keytruda (pembrolizumab.)

I’ve heard of pretty severe side effects from AMG 160. Also, it involves hospitalization three times in the first month. But I’m also very enthusiastic about immuno therapy‘s as a treatment for cancer. But Pat is very weak from his three months on Lynparza, which left him hospitalized. He’s still recovering almost 3 months later.

Any Suggestions on which path we should take? I know people will say talk to your oncologist, but unfortunately ours is not that type of doctor. Yes we should change doctors. But until now it’s been the standard of care so it hasn’t been difficult. I’d like to change doctors at this point but Pat is reluctant to change horses midstream. I understand the fear.

So I’m trying to find people that have had Jevtana or been in this AMG 160 trial to get a feel for which way we should go.

Thanks for any help anyone can provide.

[Tall_Allen]

Lynparza can have some horrendous side effects. Often, when PARP inhibitors work well, cabazitaxel+carboplatin will work well too. But the converse is also true.

BiTE is not a walk in the park either. The autoimmune reaction can be life-threatening.

It's a tough decision. Good luck.

[Hidden in reply to Tall_Allen]

Lynparza, at full strength, worked. But it also made him an invalid. He’s tired of feeling bad all the time. He had a good run on Zytiga. I just wish there was something that would get him at least a few good days a week again.

[Tall_Allen in reply to Hidden]

In that case, cabazitaxel+carboplatin may work well for him. Since he's had docetaxel, he knows pretty much what to expect.

[Birdfeed]

My husband did amg 160 which gave him terrible side effects. He did 3 infusion and it did not work. His cancer spread and is in his liver now.

[Hidden in reply to Birdfeed]

I’m so sorry. It just seems like there are so many level three side effects with that. And he really is not wanting to feel that bad anymore. We may have to have a discussion on discontinuing treatment. But of course that’s his decision.

[Hidden in reply to Birdfeed]

🙏

[RyderLake2]

Hello, How do you know Xtandi will fail "fairly quickly"? We are all different. I have been on Xtandi for nearly five years. Still working for me. My PSA is currently down to 0.031 from slightly less than 1700 eight years and two months ago. At diagnosis in 2013, I had extensive bone metastasis from my neck to my knees. Fortunately, no soft tissue involvement. In my humble opinion, some people are far too quick to dump SOC drugs in favour of the newer more flashy drugs . I think it is far better to add drugs to the mix than drop the existing ADT and second tier drugs like Xtandi (enzalutamide) and Zytiga (abiraterone). Combinations do work. Most doctors will tell you that two drugs are better than one and three drugs are better than two. Choose wisely so you get a synergistic effect.

[Hidden in reply to RyderLake2]

Normally, people take one or the other. He was on Zytiga for 2 1/2 years and it worked well for two. It is commonly known that when you switch to the other it usually works for only 2 to 8 months because the two treatments are so similar. I’m happy to get the extra time but I’m searching now for our next treatment. We are thru the standard of care. I’m happy you got such a long run from Xtandi initially. But many others aren’t so fortunate.

[Hidden in reply to Hidden]

My husband only got 14 months off of Zytiga, then we went to Chemo and that failed. Tried Xtandi and his PSA doubled in a month. Yesterday he had his first Xofigo. We will see. Good luck to your husband.

[RyderLake2]

Hello, I would consider Lutetium 177. A number of radiation oncologists recommend that you stay on Xtandi as it improves the uptake of the Lutetium. It doesn't work for everybody but some folks get amazing results. Fewer side effects than some of the drugs you have mentioned.

[Hidden in reply to RyderLake2]

I wish we could. It is my first choice. Unfortunately I’m waiting on the FDA to approve it in the U.S. It’s supposed to happen by the end of the year or I would look into going out of the country for it. Right now I’m hoping the Xtandi continues to work as a bridge until it’s approved. But if it doesn’t I’ll need the next drug researched and chosen. But thank you for the recommendation. I agree with it.

[Jasmann in reply to Hidden]

Why are you waiting? I went to Germany and got it done. Bingo. All Mets were gone. No side effects. I'm back to a normal lifestyle. Good luck with the FDA. From what I'm hearing, even if the FDA approves, it probably won't be covered by most insurances for some time after that and will probably be more expensive than places that have been doing it for many years now and have the experience. Good luck with your decision

[Hidden in reply to Jasmann]

Honestly, the Lynparza took him down so hard he wasn’t well enough to travel. He probably is now so I will look into it harder. Could you tell me where you went?

[Hidden in reply to Jasmann]

We are waiting because we can not afford to go to Germany. That simple.

[Turt713171 in reply to Jasmann]

What hospital in Germany

[Jasmann in reply to Turt713171]

Prof. Dr. Richard Baum

Contact:

Natalie Groppler

-Patienten Managerin-

CURANOSTICUM Wiesbaden-Frankfurt

in der DKD HELIOS Klinik

Aukammallee 33

65191 Wiesbaden

T +49 611 / 577 14169

F +49 611 / 57 75 87

[e-mail]

curanosticum.de/

[Hidden in reply to Jasmann]

Thank you so much! Blessings for your future.

[Puppypaws78 in reply to Hidden]

This is where my husband is. He is currently on xtandi and is castrate resistant with distant mets. His PSA has been rising on xtandi, but its not rising fast at the moment. The plan was to continue with xtandi\lupron for a month, as our onc. seems to think we will have a psma scanner and be able to do LU-177 in Aug. Of course I am sceptical of it being this soon, but we will see soon. He goes back on the 10th.

[barbur]

In addition, I would thing about the following option:

1. Estrogen Patches. It is old but may be very potent treatment though the oncologists do not enthusiastic about it.

It has preety good anti PC activity and also it improve QOL.

A lot on it in the net, just search for Estrogen Patches and Prostate Cancer.

The point is the dosage. It should be preety high. One more question is breast enlargment.

I used to consume it about 10 years ego.

2. The second option I would think of is LUT177. But here one need to start with reasonable results of blood tests and also good response to PSMA detection.

Good luck

[Djorko]

How old is he?

[Hidden in reply to Djorko]

68

[Hidden]

I’m on Jevtana now…I’m on my 9th dose and have responded well and the side effects are manageable. For me, it’s been a positive experience, but I know it’s not for everyone.

[Hidden in reply to Hidden]

Thank you for letting me know. I know everyone responds differently and all we can do is try the different drugs. But I’d rather be home if things go south then in another country. Lynparza was so difficult I can’t imagine if that happened in another country. I couldn’t even get him home.

[chips1942 in reply to Hidden]

Hi, I’m surprised that your doctor or someone on the forum has not suggested you consider Xofigo Ra 223 which specifically targets prostate cancer metastasis in the bones. It is FDA approved and has few side effects for most men. This radioactive treatment is one shot a month for 6 months and it often reduces pain in the metastatic bones. Look it up online & ask his oncologist whether it is appropriate in his case. I was my uncles caregiver for about 10 years (85-96) he responded well to Xofigo & also had a reduction in his PSA.

[Hidden in reply to chips1942]

Thank you for this suggestion. I did ask about Xofigo, but his oncologist dismissed. I’ll research it more before we see him again in 2 weeks.

[Nous]

hi LonnieLue ... sorry to hear about what you guys are going-thru ... pehaps ... consider checking-out ... drgeo.com ... and ... envita.com ... best wishes ... Nous

[Hidden]

Sorry to hear about what you both are going through. I am also in my 5th year of battling a Gleason 9 with spine mets. I started out the gate with Docetaxel and Lupron four years ago which worked well at the time. Radiation and Zytiga also backed it down and held for a while. After scan showed progression, I started on Jevtana back in April. Was much easier for me to tolerate than the Docetaxel many years ago. After four rounds of Jevtana and no reduction in spine mets, I added Carboplatin and have had 2 rounds so far of the combination. The combination is tougher, but hoping for some reduction in disease. Added some Dexamethasone tablets on day 2-4 to help alleviate the big chemo crash on those days. I think LU-177 is likely in my future as well. I’ve heard while waiting for FDA approval, you could possibly get it as compassionate use.

[Hidden in reply to Hidden]

Thank you for sharing your experiences. This is exactly what I was hoping to get. This forum has been such a Godsend! I hope you soon get good news on the treatments.

[Cynthgob in reply to Hidden]

I haven’t heard about compassionate use? Explain please

[Hidden in reply to Cynthgob]

Novartis has created a trial for a Managed Access Program to get access to LU177 prior to FDA approval. Certain criteria must be met.

clinicaltrials.gov/show/NCT...

[Hidden in reply to Hidden]

Thank you so much for this information! I’m going to try to see if I can get this started immediately. Hoping he is eligible. I so appreciate you sending this and I love this group. You are a great bunch of guys to help others the way you do when you’re all struggling yourselves. I stay in awe of your kindness, faith, strength and hope.

[Fairway]

Hi, I have no expertise this area. Just wanted to wish you well. Fairway

[Hidden in reply to Fairway]

Thank you ☺️