Follow up to "My trajectory after a 'vacation' and a new metastasis," and a new question

[Istomin]

I though that the recommendation of the "tumor board" at Smilow Cancer Center in New Haven, CT, would be "doublet therapy" to treat the new metastasis that was found with a PET PSMA scan, (the second one that was found after my Lupron "vacation"; the first was treated with radiation--details of my case are in my Profile and my previous post). But it seems that my medical oncologist has a minority opinion that it might be worth radiating the new, second metastasis--not because this is likely to eliminate my cancer altogether but to put off the side effects that will come with doublet therapy. The second metastasis is in a lymph node in my chest and close to where the resolved first metastasis was in a lung. My radiation oncologist said that despite the proximity, he could still target it, although the downside is some damage to tissues that are close to each other, which increases the possibility of radiation side effects.

All these discussions have taken longer that I expected (or liked) because of the holidays and the oncologists' increasingly busy schedules.

So, the question now is what to do? "Whack the [new] mole" that has popped up, or do the systemic hormone therapy to get it and all the micrometastases that are as yet invisible to scans? My previous three years on Lupron weren't as hard to endure as they could have been, judging by what I read on this forum and elsewhere. But I have felt well for the past year plus and don't relish having heavier side effects from the "doublet therapy." If I did the radiation as a kind of "stop gap" measure, would I be giving my cancer a chance to spread in a way that would make it more difficult to control with "doublet therapy" down the road?

Sorry for the long-winded post but it's tricky balancing the options when there are different shades of grey. I would be grateful for any comments.

[Tall_Allen]

You've got a systemic disease and need systemic therapy. You can play whack-a-mole too if it is safe to do so.

[Istomin in reply to Tall_Allen]

Thank you, Tall_Allen.

[103532]

Hello Istomin, My husband is also a Smilow Patient for newly metastatic pca (avid retroperitoneal lymph nodes on PSMA scan…..considered low burden ogliometastatic). We started doublet therapy (Lupron/Zytiga/Pred) and we sought and received confirmation from MSK that this was the best combination to fight this disease at this stage. So I would encourage you to consider doublet plus radiation for a long durable remission. My husband will be managing his side effects with Effexor (an SSNRI), Estadial patches if needed, and lots of healthy exercise. Within three weeks of starting this ADT combo, he is back to undetectable. As far as radiation, if it is deemed safe, I would encourage you to proceed with this as well. We are doing the same. Although you and my husband are both systemic, radiation will remove the present cancer burden and the ADT will work on the micro-mets. My philosphy is there is less to lose and more to be gained with this approach, and could potentially lead to a period down the road where if is less risky for an ADT break. Good luck with everything!

Stephanie

[Istomin in reply to 103532]

Thank you, Stephanie. I hope your husband’s great result continues.

[pakb]

You can read my husband's stats in my profile. He did have one previous met 'shine brighter' on a scan a couple of years after diagnosis that his MO decided to spot radiate. We were told it would help with pain that might come from the met. That, along with the important systemic treatment, has kept my husband's progression at bay for the last years.

[Istomin]

Thank you, pakb. I hope things continue to go well with your husband.

[NecessarilySo]

Just thought you might want to try heat, which I have used to eliminate many metastasis. Check my bio. Beats waiting.

[Istomin]

Thank you, NecessarilySo. Hope things continue to go well for you.

[Stevecavill]

very similar to me.

I had rising psa about 4 years ago, (still less than 1.0) new lesions on PSMA pet, whacked them with SBRT. Dropped psa in half. Stayed there for two years.

Rising psa again 12 months ago, new lesions (lymph nodes) on PSMA, whacked them with SBRT, briefly dropped psa, but quickly reverted to pre SBRT (around 1.0). BUT on my most recent psa, it actually dropped slightly, so psa seems to be holding steady. So I’m glad I did the second round of whack a mole, even though it seems initially to have not been beneficial

My thoughts in your case would be do the SBRT, as long as the likely radiation side effects are not significant. Because, really, what is there to lose? If the SBRT doesn’t help, then you start ADT. Which you were going to do anyway, so really no worse off.

But if the SBRT DOES work, then you get more time off ADT.

I’ve been playing whack a mole since first diagnosed with de novo metastatic 11 years ago, with periods of ADT in between and a course of docetaxel 7 years ago. Been off ADT last 6 years after the chemo

[Istomin]

Thanks, Stevecavill. Hope things continue to go well for you,

[Nfler]

Since this disease is systemic that’s why I believe im having such great results w ivermectin n cbd oil especially off ADT, so maybe an option as well. Cbd is readily available but ivm takes a little while to get unless you go to a feed store but would def consider it if you want to hold off on ADT. Good luck 🍀…😊

[Istomin]

Thanks for writing, Nfler, but I'm considering only variations of medically approved, standard of care options. Good luck to you too.