Help with upcoming decisions

[Dalipup]

hello all,

My husband will be heading to the oncologist next Tuesday after trying to rechallenge with Zytiga and dexamethasone after 5 rounds of docetaxel. he has been off chemo since June 26. since that time he has had several biopsies to get a sample to enter into the Vision trial, all of which were unfortunately nonproductive (please read previous post) his last PSA draw was Aug 28 and at that time his psa was 45 and had been slowly climbing since going off the chemo. he started Zytiga rechallenge on Sept 15, since we had a struggle getting meds through some pharmacies (long story). he has not had a PSA draw since and I have no idea what to expect when he has one next Monday Oct 7. last draws are: 6/24 psa 25.2, 7/15 psa 29.7, 7/26 psa 27.9, 8/2 psa 37.4, 8/26 psa 45.7....I'm worried he may be in the 100s by now,

that all being said, we are tossing options around in our heads about what his next steps should be. at this point he began to get some hip and low back pain about a week prior to the Zytiga showing up. when he was diagnosed (again refer to previous post) he had mets throughout his spine, pelvis, ribs, shoulders, legs, skull. once on Lupron, etc, his pain went away until an achiness triggered his scans and change from Zytiga to Xtandi then to chemo from Jan through March. each start of medication tends to relieve whatever achiness he is having so we are thinking that achiness is due to the cancer in his bones. since rechallenging with Zytiga he has continued with the achiness off and on, but it has lessened a bit but not gone away. I am concluding< and I know this is premature, that he is doing nothing more than maintaining on the Zytiga and his oncologist may want to move us to other options.

sorry that was so long before a question!

1) if the PSA is increasing and doc wants to move on we are thinking about different options

a) trying provenge?

b) cabazataxel? although we are hoping to avoid the chemo at this time

c) Radium 223....we had avoided this due to the fact that he was hoping to get into the vision trial and there was a requirement that you needed to be off of Radium 223 for six months prior to the trial.

here is one big question. since the trial is off the table at this point. if he were to start on Radium 223 now and then decide to go to Germany if this doesn't work for the LU 177, would being on the radium preclude him from using LU 177 or was that just a parameter for the vision trial? because frankly giving his biggest issues are mets to the bones, radium 223 makes the most sense as a next step, but we also don't want to do something that will take him out of being able to use LU 177 or ACT 225 in the future.

any thoughts you have would be greatly appreciated.

[Tall_Allen]

I think you're right that the exclusion of men who had taken Xofigo was just for the VISION trial, but you can get that confirmed by calling Germany (Uwe Haberkorn, Heidelberg U, Phone: [phone]).

Recent data show that the danger of Xofigo+Zytiga is mitigated by a bone preserving agent, but you may have to fight your insurance company on it.

[Dalipup in reply to Tall_Allen]

Thanks so much for the reply Tall_Allen. this site has been such a tremendous help to us. I'm so glad I found you caring group of people!

[Zensailor]

The best sequence of medications will be described by you Oncologists, based on his new results. You don't die if you PSA is 100, but that is problematic. Mine has been as high as 686, down to 8, back up to 286 or so, down to 40 back up to 260+ and now back down to 39. My point is PSA's can travel up and down and new treatments can bust it good.

I am currently in my 3rd treatment of 6 for LU-177 in a clinical trial in Tucson. You have named it the Vision Trial, I cannot be sure we are talking about the same trial. I also cannot remember the exact protocols for the trail, but those are published.

I cannot be sure, but I believe that the trials are now closed to accepting new applicants and results are being sent to the FDA for final approval of the drug, which they expect to be some time next year. Hopefully! hopefully! and that is promising. That is not to say that you cannot use other options until then. For many this is a waiting period until it is officially available.

For me being in the trail was almost my last chance since I have been through 3 years and almost every treatment possible. I was treated with Docetaxel, at two different times, once for 6 months and then 18 months later for 5 months, and Radium 223. To clean my system, a wash out period, of both Chemo and Radium 223 I went for 2 months only on Lupron and my PSA rose from 40 something to 260 something. Since being on the LU-177 after only 2 treatments (12 weeks) I am back to 39. So it is working. I had my 3rd treatment last Monday. I have not had cabazataxel, as it would have prevented me from being in the trail. So that is still in reserve.

I cannot give you advise except to have faith that there are several treatments available that can keep you on the wave until LU-177 is available to all. I can also provide you with a contact person: Anne Phinizy at University of Arizona, Cancer Center Tucson is the Clinical Trial Coordinator for that treatment center. She can be reached at: 520 694 9035.

our thoughts and prayers are with you and your husband. Tom

[Dalipup in reply to Zensailor]

Thank you so much Zensailor. Reading other's journeys gives us hope always. it was very helpful to know that you did Radium 223 prior to the LU 177. I think that is our next question for doc on Tuesday. since my husband has mets through all his bones, that seems to make the most sense.

thanks for the contact number as well.

we keep all of you in our prayers

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

Remember God is on your side.... My prayers are for him indeed...

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 10/06/2019 10:46 PM DST