Still confused on next step

[Bobcat64]

Dx 12/15/2018, PSA 60, GS 3+4, ADT eligard, firmagon, casodex, 6 month PSA=0.1, 8 month=.9, off casodex, 10 month =4.6, 12 month =12.3. PET scan impression = SCLEROTIC OSSEOUS MOST METABOLICALLY ACTIVE IN THE POSTERIOR ASPECTOF THE RIGHT ILLIAC BONE. NO EXTRA-OSSEOUS FDG-AVID MALIGNANCY IS IDENTIFIED. MO wants to put me on Xtandi. I have had some suggestions including radiation and using MO Kwon’s oligmetestatic protocol and proton therapy.

Still on Xgeva which was started with ADT. Any comments or suggestion would be very much appreciated. Thanks

[tango65]

If your cancer is oligometastatic, only one metastasis, you could discuss doing radiation of the met plus radiation of the primary and probably whole pelvis radiation. The Stampede trial showed a survival advantage when the primary tumor was treated with radiation in cancers with 3 or less metastases.

redjournal.org/article/S036...

[Tall_Allen]

You asked this before. What is confusing?

[Bobcat64 in reply to Tall_Allen]

Sorry if duplication. A member suggested more detail might help. Did not want to use your valuable time.

[Tall_Allen in reply to Bobcat64]

I was just wondering what is confusing. Next steps seem straightforward to me.

[Bobcat64 in reply to Tall_Allen]

Sorry maybe confused is a bad choice of words. Scared may be better. If you were me would you go for radiation then hormonal or hormonal only then radiation or a combination of both.

[bobdc6 in reply to Bobcat64]

No worries Bobcat, ADT scrambled my brain too. I went through 18 months of it, and understand. After one year off of ADT, I think my brain is still somewhat messed up.

Bob, G9

[Tall_Allen in reply to Bobcat64]

Hormone therapy begins two months before radiation starts and continues afterwards. If you can get Xtandi, you may be able to start radiation sooner - you can begin radiation when PSA becomes undetectable, or at least lower.

If you can, try to get SBRT to the prostate and the met - it's a lot less bother than a long course of IMRT or proton.

[Bobcat64 in reply to Tall_Allen]

Thanks I begin Xtandi on Wednesday. Appreciate your help

[ARIES29]

Everything about the advice given is confusing so do not blame yourself for not understanding it. Radiation could be the next step but seek advice from experts first.

I went to Lutetium 177 & it cured all so far but I did not have mets to bones.

[Caring7]

I can't tell from your post if there are signs of worsening but it doesn't seem like it. If not, keep with Xtandi? uberoncologist dr. Eric Small at UCSF says "ride the pony as long as you can" (Pony Express metaphor). My husband was on Xtandi over 2 years without progression and our expression was "Xtandi is Dandy." He then switched to Xgeva when the Xtandi stopped working as well. He got about 6 months out of that.

Not sure why you stopped Casodex if the disease is still pretty active.

For radiation considerations, talk to a Radiation oncologist. There are cost/benefit analyses to doing radiation early in the disease, depending on where the tumor is and if it's causing you pain. As I recall, a bit vaguely, massive radiation to the pelvis in the early stages was not recommended because of the bone marrow production - but they have a lot of really focal radiation options now, and the RadOnc is the best person to review all of these options with you. The RadOnc also will do (should do) a really thorough review of your scans on bone. Throughout the process we've found consults, and some treatments, from Radiation Oncology really helpful.

This site is great but everyone's case is different. You can try to find a consulting oncologist at a research center, not to change your care but as a resource. We live in Hawaii and see someone in San Francisco about every six months or a year. All Dr. Small does is prostate cancer, and so he is totally immersed (and there are oncologists like that all across the country/world). That's what we do and our regular oncologist is totally fine with it and appreciates the most up-to-date in put.

Go in with a list of questions to your oncologist and get them answered. We've kept a single book for this all along, and it's been really helpful when we want to go back and trace the disease over 6 years. (yay - 6th new birthday as my husband calls it - in March).

Best wishes for figuring out your next steps.

[j-o-h-n in reply to Caring7]

Great advice.............

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 02/10/2020 6:55 PM EST