Decision time on Tuesday morning after progression shown in scans

[Dalipup]

hi all, My husband has spent the last two months on Zytiga rechallenge after 5 rounds of docetaxel. He has had increased hip and back achiness, not severe pain. last month I thought with PSA jump from 45 to 57 that onc would change therapies, but he felt we could continue at that time with the zytiga/dexamethasone as Husband had only been on it for three weeks at that last appointment. his alkaline phosphates went up to 150's so I mentioned my concerns about not changing therapies, but Husband felt good, has energy, low pain so we stuck with it another month. with genetic testing and scans done prior to his next appointment which is next Tuesday,.

Genetic testing showed no markers at all, so good for our kids but not good for finding a different therapy.

Scans revealed a progression in his bone mets which had shrunk over the course of the last year and a half and in June had been holding steady. there is an increase in the size of the tumors in his bones in his spine and sternum and pelvis with two new spots in the ribs. obviously time for next therapy.

Last month I was leaning toward Radium 223 as that seems to be more directed to the bones. Doc had talked about a next step being Provenge or Cabazataxel. His reasoning in not jumping at Radium 223 was that many clinical trials often don't like you to have used it and it may preclude him from a trial, although the onc didn't have any specific trial in mind when I asked.

He has only two small lymph nodes that have not increased at all in the past six months and nothing in lungs of liver., so we are looking mostly at bone issue.

my concern is provenge will not attack the bone mets as well as Radium 223. and that chemo attacks the whole darn body and not just what is in the bone.

thoughts would be most welcome at this stage as we are trying to have good questions and ideas for his appointment on Tuesday Nov 5.

[Tall_Allen]

Xofigo with Provenge might be a good combination.

[Dalipup in reply to Tall_Allen]

Thanks so much! I was wondering if we could do them together.

[Tall_Allen in reply to Dalipup]

I have no clinical data to back this up. But it seems reasonable that Xofigo dumps a lot of cancer antigens into circulation where they can be identified by the Provenge-amped up immune system.

[Dalipup in reply to Tall_Allen]

We will definitely bring this up with MO on Tuesday. Thank you

[Dalipup in reply to Tall_Allen]

Have you heard of a new trial that includes olaparib and another drug in combination? We had messaged the oncologist today and he said we will talk tomorrow but mentioned this. Wondering how husband would get into that as no gene mutations showed up

Thanks

[Tall_Allen in reply to Dalipup]

Why would you want a clinical trial of olaparib if no gene mutations have been identidied? It has minimal effectiveness for those without the BRCA mutation. Toxicity is high.

[Dalipup in reply to Tall_Allen]

That is what I thought as well but didn't no if there was something I was missing. Thanks. Wanted to be well informed for visit tomorrow

[Tall_Allen in reply to Dalipup]

pcnrv.blogspot.com/2019/10/...

[Dalipup]

Wow thanks. That would be amazing to bring in if you guys can find ir

[ctarleton in reply to Dalipup]

This might be it. Small trial. Full results expected in 2020. More consultation advice might be obtained from the Principal Investigator:Emmanuel Antonarakis, MDJohns Hopkins University.

"Study of Sipuleucel-T W/ or W/O Radium-223 in Men With Asymptomatic or Minimally Symptomatic Bone-MCRPC"

clinicaltrials.gov/ct2/show...

Charles

[Dalipup in reply to ctarleton]

This is perfect. Wonder if we can manage to do the same thing without the study. Thank you so much!

[Dalipup]

Thanks. This is so helpful. We feel so blessed that God led us to this site!

[tango65]

You are right there was a clinical trials which has finished. They are planning to release some results before the end of the year and the final results are supposed to be reported in 2020.

They administered both medications sequentially. Weeks 0,4,8,12,16 and 20 xofigo and weeks 6,8, and 10 provenge.

clinicaltrials.gov/ct2/show...

[tango65]

You could discuss the possibility of doing Lu 177 PSMA. This treatment will treat the bone and the soft tissues metastases and it is usually well tolerated by most patients. There are some clinical trials:

clinicaltrials.gov/ct2/resu...

Before considering doing Lu 177 PSMA he has to have a PSMA PET/CT (Ga 68 or 18 F DCFPyl). There are clinical trials:

clinicaltrials.gov/ct2/resu...

clinicaltrials.gov/ct2/resu...

The scan will show if the cancer is PSMA positive. The treatment can be also obtained abroad in Germany or Australia and it could be combined with Ac 225 if the scan shows bone marrow infiltration by the cancer.

[Dalipup in reply to tango65]

Our problem with all the clinical trials is we have no tissue sample as he never had a prostate biopsy. He has done liquid biopsy, two bone biopsies of his hips, two bone marrow biopsies and they tried for a lymph node and either missed it something every time but nothing came back with tissue sample! Been a long frustrating road simply trying to get a sample we have talked about paying out of pocket to get a psma scan so we know if pursuing looking into Germany is an option our o oncologist said if the tumors grew maybe we can try for another shot at a sample. This may be something g we discuss Tuesday as well. Thank you for all your help

[tango65 in reply to Dalipup]

I understand since all the trials require pathology confirmation of the cancer. You could consider getting the Ga 68 PSMA abroad. I had the Ga 68 PSMA PET/CT done in Munich and the following day the treated me with Lu 17 PSMA. It is possible to coordinate this type of situations. Just in case this is the webpage of the office for foreign patients at the Technical University of Munich:

mri.tum.de/node/5909

There are many other places in Germany, Austria, Finland, Australia and South Africa.

[Dalipup in reply to tango65]

Thank you so much!

[tango65 in reply to Dalipup]

Best of luck.

[WXYZ123 in reply to Dalipup]

Why don’t they biopsy the prostate?

[Dalipup in reply to WXYZ123]

Actually they did try that in September but after a year and a half on various meds including chemo, there isn't cancer left in the prostate! How can that be?

[tallguy2]

Welcome back Nalakrats. We have missed you. I hope you had an enjoyable sabbatical!

[tallguy2]

Provenge is usually indicated for those patients with low tumor burden and no "co-morbidities." Your husband may be ready for something else.

[Hidden]

Good luck at the Doctors tomorrow . 🙏

[monte1111]

Best wishes. I also have been on the provenge and xofigo thought wave for future treatment. Alas, don't know if it would work better, if doctor or insurance would approve. Sometimes we live lives of desperate uncertainty.

[j-o-h-n]

Too bad you can't tape the meeting on Tuesday. 11/05. BTW would you be kind enough to let us know your husband's age, location, treatment location(s), and Doctor's Name(s)? All info is voluntary but helps us help you and helps us too. Thank you,..

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 11/03/2019 7:41 PM EST

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

My husband turned 64 in March. We live in Michigan and he is being treated at the Rogel Cancer center at the University of Michigan in Ann Arbor. He sees Dr Frank Cackowski.

[j-o-h-n]

Thank you for your quick reply. You may want to paste your response on your home page under your ID for future reference by our members. Hopefully you'll get good news on Tuesday.

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 11/03/2019 8:12 PM EST

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

Thanks j-o-h-n!

[Patrick-Turner]

I had similar poor response with Docetaxel after 5 shots. I went straight to Lu177, which seems to have worked well for me, Psa went from 25 last Nov to 1.6 at May last, was 0.4 in Sept, and I feel very well and cycled 230km last week, at good speed, at age 72. Xtandi was added to my treatment right after Lu177 No3 shot because by then it looked like Lu177 was working, and Xtandi would help it work better, and continue later, which it now seems has happened.

Last Psa was 0.4, down from 25 before Lu177.

Chemo damages your immune system, and Provenge works on white cells which are removed then re-injected to chase and kill cancer cells. But to work well, the white cells must regenerate and carry the cancer killing property to next generation of white cells, and that does not always happen, hence mean life extension for Provenge is 4 months. But I have had a email me to say he got 10 years. Not many do it seems. Zofigo can make bones brittle, because radium replaces calcium in bones, and it sure seems effective for bone cancers but where bone mets are large, bones can become weak where the Ra goes.

My biggest bone mets were about 1cm dia, and so far my bone strength has not been affected. At least you should have PsMa Ga68 PET/CT scan to find out more. You may find Lu177 is less expensive than Ra223 (Zofigo) or Provenge.

You may be able to have them after Lu177 if needed.

Lu177 did not seem to affect my immune system as badly as chemo and I did not have to have shots of Neulasta to boost my white cells like I did with chemo.

Patrick Turner.

[Dalipup in reply to Patrick-Turner]

Thanks for your hopeful message there are times on this PC roller coaster when hope gets difficult. It sounds like you live in Europe where LU 177 is available? I just said today next steps need to be to get the PSMA scan done to see if that is an option. Again thank you for your thoughts

[Patrick-Turner in reply to Dalipup]

I'm in Australia where Lu177 has been available since about 2015 from Theranostics Australia. Many in US go to Germany, but I met men who had flown over from USA to Sydney for each Lu177. So they had the money for Lu177, plus the air fares, and a stay at a hotel, and none of that is cheap.

I hope for best of luck,

Patrick Turner.