Question on next option

[monkey1991]

Just got my PSMA report that showed 12 bone lesions on spine and ribs. Psa is 12.3 and I am without pain. Have gone thru about all options except Zytiga. Any option other than chemo. Thanks for your assistance.

[Magnus1964]

Have you been on casodex or xtandi? There is also genetic testing to see if a PARP inhibitor would be right for you.

Xofigo is also an option.

[monkey1991 in reply to Magnus1964]

Have been on most hormonal therapies including xtandi. Just came off estradiol patch’s which were no longer working. Had some spot radiation as result of suspicious spot on axiom scan. PSMA scan as Psa was rising. Genetic testing showed nothing for Parp inhibitors.

[Neverover in reply to monkey1991]

How long did the patches work. My husband is also like you, no pain. Mets on many parts of the torso. He would like to try the patches but the doctor isn't comfortable doing it. He has ordered Zytica

[monkey1991 in reply to Neverover]

I was a patient of Dr Myers for 14sh years. He had me on patch’s for about 10 years with time off for scans. Myers always said that I was on the patch’s longer than anyone he knew. I think they are worth a try.

[Neverover in reply to monkey1991]

I am so happy that they worked for you for so long. I hope that we can find a doctor to agree to help my husband with the use of the patches

[tango65]

Your profile indicates you failed xtandi and zytiga and you are stopping estrogen patches. If this is correct, you should discuss going into ADT (lupron or similar or continue with the patches) and have treatment with chemo. If you are not interested in chemo you could talk about Provenge and Xofigo.

If financially possible you could consider to go abroad for treatment with Lu 177 PSMA and/or Ac 225 PSMA. There are some clinical trials for these therapies in the USA, perhaps you could qualify:

clinicaltrials.gov/ct2/resu...

Consider to talk about a direct biopsy or a liquid biopsy to study the genome of the cancer to determine if there are mutations which could be treated with specific drugs, such as keytruda, olaparib etc.

[monkey1991 in reply to tango65]

Nothing in genetic testing results. Have not been on zytiga. Dr feels it is more effective after chemo. I am probably looking at chemo or xofigo. Lymph nodes and a organs were all clear.

[Hidden in reply to monkey1991]

Organs clear good!

[ctarleton]

Provenge or LU-177 PSMA might be other non-chemo options, besides Xofigo. Ask your doctor, or research them independently. (You can also search for historical Posts here.)

In the chemo world, you might also consider Jevtana (cabazitaxel) in lieu of Docetaxel. Many men do better than they feared on some chemos. Having the option to stop or delay can sometimes calm some of those fears "going in" to a series of such treatments.

[monkey1991 in reply to ctarleton]

Thanks, obviously this has been a shock. I am 18 years with stage 4, and have never had any pain or issues. Thought I was in good shape after axiom pet scan. Now I have 12 Mets. I spoke to the researchers at UCLA and they are not very high on LU-177. Dr does seem to favor going with Jevtana.

[Hidden in reply to monkey1991]

18 years with stage four is a dam inspiration for us just starting out . But no pain or issues was a dammed miracle in my opinion . You did something right . You will do what’s right for you again . Be well monkey1991🌵

[monkey1991 in reply to Hidden]

Thank you

[chalaan]

You say that you have not taken Zytiga. This worked well for my brother after Casodex and Xtandi failed. I very much liked ctarleton suggestions. Good luck.

[Tall_Allen]

Here is what we know about sequencing:

prostatecancer.news/2019/12...

[Nathalie89]

Chemo is not all that bad. Well for a lot of people anyway. My dad was dreading it. He got on amazing. He used to be out in the pub the night before chemo and had a hair of the dog after chemo. He used to get a bit tired but that was it. They gave him 2 different chemos. He would have taken more but for some reason they wouldn't give it even though they then gave him Xofigo and that was the worst mistake of our lives. Now I know some people get a good response but the majority I have read on here have been bad. Please please do your research and really think about it before you go ahead. I wish you all the luck in the world. 💚

[monkey1991 in reply to Nathalie89]

Thanks

[Rexwaterbury in reply to Nathalie89]

Can you please explain the problems you had with xofigo?

Thanks.

[Nathalie89 in reply to Rexwaterbury]

Hi. Hope you are well. So whenxofigo was mentioned. We were told oh it's fantastic. It repairs the bones. Hardly any side effects. Might get a sore tummy and things like that. Was never told it might drastically damage palettes and bone marrow. Dad got his first injection just before Christmas. And from the first one he went down hill. On the 3rd one they said his iron was low but would still go ahead. After that it just went from bad too worse. He got blood transfusions but they only helped for a few days. They then told us they could do no more. After treating him for 8 years that was it. He was in great form and able to get around good before all that. They gave him 1 radiation in October and that helped so much. His cancer acaully hadnt spread that much in 8 years that's the killing thing. I know that's the risk we have too take sometimes. But I know for certain if we had our time back he wouldnthave done it. Stay safe x

[monkey1991 in reply to Nathalie89]

Thanks for your info

[Vany4]

I would go with lu 177 and ac 225. You Mets are exhibiting psma and these will hit them directly. You do not need your doctors permission to do what you think is best

[monkey1991 in reply to Vany4]

My drs not adverse to LU-177, UCLA folks noted that it is only effective in 30% of cases. I need to study further. Traveling to Europe might be bigger issue.

[MateoBeach in reply to monkey1991]

That is correct about Lu-177 only being modestly effective for a time in the minority of cases. Furthermore, It works less well on bone mets than on lymph node mets. So it would be a wild card and may not be worth it. Xofigo is probably better. And certainly Provenge even though it is difficult to quantify the benefits. Don't leave Provenge "on the table" if you can get it.

There is no denying that chemo sucks. But you have widely disseminated disease so a systemic solution makes good sense. You can get through it. And chemo can also overcome resistance to the advanced AR drugs for many, a "two-fer".

[Hidden]

Do not fear chemo. My first line of defense in 2004 at age 57 was chemotherapy plus Lupron. At the time PSA was 32.4 with mets to T3 and L2 of my spine. Things worked out for me. Good luck.

Gourd Dancer

[monkey1991 in reply to Hidden]

Thanks, leaning towards chemo.

[Rexwaterbury]

Why were the UCLA doctors not enthusiastic about lu177, and why was the xofigo so bad?

Thanks.

[monkey1991 in reply to Rexwaterbury]

Didn’t discuss xofigo. They felt LU-177 isn’t as effective as advertised.

[Rexwaterbury in reply to monkey1991]

I can attest to that. I was a very good candidate. Intensely Psma avid. Three treatments shrank my lymph nodes, but had no effect on my bones.

[j-o-h-n]

no hear, no say, no do.....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 06/20/2020 7:34 PM DST

[monkey1991]

Had genetic testing , nothing unusual.