Stage 4 metastatic prostrate cancer

[karlsiller]

I was 56 and started experiencing back pain to the point I had to go to the emergency room. 3 hours later after multiple tests the doctor tells me I might have prostate cancer that metastized to my bones. A biopsy a week later confirmed the diagnosis. That was a year ago. Treatment was decided to begin immediately with ADT, chemo and radiation therapy.. I lit up like a Christmas tree with my body scan.. I’m PSA undetectable a year later and maintaining my ADT.

[joancarles]

Congratulations for the result you are having!

[karlsiller in reply to joancarles]

Thank you.

[whatsinaname]

As regards the ADT drugs, which are you taking ? Casodex, Lupron or Eligard ?

I presume the chemo was docetaxel ? How many cycles ?

Thank you for any reply you may care to give.

[karlsiller in reply to whatsinaname]

Eligard every 6 months time release injection in my belly, Docetaxel 75 mg/m2 IV Prednisone 5 mg daily oral bid Dexamethasone 8 mg bid x 3 days starting the day before chemotherapy Repeat every 3 weeks (21 days). Total intended 6 cycles.

[whatsinaname in reply to karlsiller]

Thanks, karlsiller, much obliged.

I too am on exactly the same at the moment. My latest PSA is 5.65. Lets see whether my PSA can fall to far lower levels.

Thanks again, karlsiller, all the very best.

[karlsiller in reply to whatsinaname]

Good luck. My treatment started in Oct. 2017. PSA was 22. It gradually went down and by Feb. of 2018 it was less than 0.01 and has been there ever since. last tests were 4 Dec. fingers crossed. Feel free to ask me anything. Wish you the very best!

[whatsinaname in reply to karlsiller]

Thank you very much, karlsiller, for your help. I am truly obliged.

I get virtually zero pain like you, but my PSA levels just do not go down

much. The next month is crucial for me.

Thanks again, karlsiller, its great having cyber pals like you.

Congratulations on your superb readings and I genuinely wish your

levels continue to stay at rock bottom. Cheers !!

[Ian2017]

Much the same process for me. I am now 18 months post diagnosis (starting with a painful back). Radiation, then ADT, then docetaxel. Currently on a quarterly Zoladex/ Zometa infusion. Unfortunately, the back pain has come back. I am due a scan (Technetium-PSMA) to see what's going on - maybe it's partly osteoporosis related and partly tumour related. Onco will then decide the way forward.

[karlsiller in reply to Ian2017]

Yeah, I’m also experiencing some back pain. I was laid up for 2 months because I received a pelvic fracture. I had no idea how I got it. Doc said it’s because my bones were so weak hence the Zometa.

[Ian2017 in reply to karlsiller]

Have you ever done a PSMA scan?

[karlsiller in reply to Ian2017]

Hey Ian- I have not. I did a Prostate biopsy and a complete body bone imaging done.

[monte1111 in reply to karlsiller]

Yep. Got up off the couch and "strained" my back. Was on the couch for 3 weeks. 2 months later confirmed APC and by the way you have a T-12 fracture that has almost healed by itself. Here is a $1000 back brace. In later bone scans referred to as a spinal compression. Extensive bone mets. Last referred to as "subtle" mets whatever that means. No new mets, abdominal lymph nodes back to normal size. 8 cycles 75mg taxatore, 16 months Xtandi. High psa 59.9, high alk phosphate about 206, now 0.2 and 66. I assume you are taking lupron and xgeva. And also zytiga or xtandi?

[karlsiller in reply to monte1111]

No, it’s Eligard and Zometa. 20mg of methadone a day for pain

[monte1111 in reply to karlsiller]

Sorry, you did mention Eligard (a form of lupron I believe), and the Zometa is used in place of the xgeva for bones. Tall_Allen cites studies about celebrex being a possible good idea if you are taking Zometa or Xgeva. You may want to do a search on that and then run it by your doc. Just fabulous you are psa undetectable with multiple bone mets and only on the Eligard. Be sure to watch your other markers. Best of luck to you.

[karlsiller in reply to monte1111]

Thank you monte. What markers are you referring too?

[monte1111 in reply to karlsiller]

High alkaline phosphate reading may mean bone cancer activity. I have my blood drawn every month because i am on xtandi. If you are psa undetectable don't guess they would do a bone scan unless they had some other reason to do so. Others here are way more knowledgeable than me. I certainly didn't mean to make you nervous. Now is the time to relax and enjoy - but also slowly learn what you may need to know for later. Enjoy your weekend!

[karlsiller in reply to monte1111]

I have been monitoring my alkaline phosphate. It started in the 1500’s...yeah. It went down as far as 350 and went back up to 400 last checkup. Doc says it went up because of some recent physical exercise. Enjoy your weekend also.

[Mkeman in reply to Ian2017]

With Zometa you might ask for a bone density scan to see how thin your bones are in various areas...including the spine.

[BSCS]

Best of luck to you! Glad you got a handle on it. Prayers.

[timotur]

Karl, congrats on your good results. Just wonder what type of radiation you’re receiving? Best....

[karlsiller in reply to timotur]

Hi Timotur- Shortly after my diagnosis I received 5 straight days of targeted blasts in my pelvis and hip areas, because that’s where most of the pain I was feeling and a significant amount of the cancer.

[Hidden]

Happy for your great results! Hoping they keep on working for a long time!

[larry_dammit]

Great for you, I was diagnosed 28 months ago with back and rib pain, Mets in ribs, spine and lymph nodes. Chemo and adt treatment. Go in Monday for scans , hav3 my fingers crossed 🙏🙏🙏

[karlsiller in reply to larry_dammit]

Hi Larry- Great to meet despite the circumstances. You’ ll do great!

[larry_dammit]

Thank you. Waiting for the scan always ties me up in a knot. Prayers to all 🙏🙏🙏🙏

[Peterd110 in reply to larry_dammit]

Praying for good results!!!🙏🏼

[ctarleton]

Welcome. Glad to hear your initial treatments are working so well.

Charles

[j-o-h-n]

karlsiller ------>🤜🤛 <------- j-o-h-n (fist bump) good job!

Questions: Where are you located and where are you being treated (Doctor(s) names too - no secrets in this forum?).

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 12/15/2018 10:47 PM EST

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

Hey John- I live in South Portland Maine. I’m being treated up at Togus Veterans Hospital in Augusta. My oncologist is Dr. Jeong Lee, from South Korea. Hell of a nice guy. Pretty smart, too.

[j-o-h-n]

Thank you for the information. Sometimes this information will trigger a response from another member on this forum which may be beneficial to you.

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 12/16/2018 12:14 PM EST

[Peterd110]

Thank you for the info. That’s an encouraging post to those of us who are in the same boat !

[Hidden]

Keep on truckin karlsiller... I’m also still flying low on adt almost 4years...

[larry_dammit]

Great news, your tests and pains sound like mine with the back pain , keep up the fight 🙏🙏🙏🙏🙏