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[kensawyerwayland]

Introducing myself

Metastatic prostate cancer

Base of skull

Gleason 9

[Longterm101]

Have you started any medications yet?

Any lymph node involvement?

Lots of smart people here that will help you navigate and help you get thru your journey

We are all in it together

Welcome and stay positive !!!

[kensawyerwayland in reply to Longterm101]

Diagnosed Winter of 2011. Gleason 8, found in surgery to be 9. Prostatectomy that June. Some cancer removed outside prostate, no lump nodes involved. 2013 -

A summer of radiation therapy (36 sessions). January of 2018 - psa up a little again, tests reveal metastasis to base of skull (where it can’t even be biopsied). Hormone therapy begun. Psa declines to nearly zero by May. December - psa up a little, 10 sessions of radiation therapy to skull.

[Longterm101 in reply to kensawyerwayland]

Any pain? Symptoms ?

Stay positive

[kensawyerwayland in reply to Longterm101]

I have never had any pain or other symptom. But for psa tests I would never have known I had cancer until it progressed.

[Tall_Allen in reply to kensawyerwayland]

It sounds like the therapies you've used have done a good job in keeping it under control.

[Zetabow in reply to kensawyerwayland]

Same for me, diagnosed in Nov, first indication was pain in thighs, PSA test came back 1386. Got PSA down to 4 on last Chemo 3 weeks ago, I have blood test today so I hope even lower now.

[nobaday in reply to kensawyerwayland]

You say base of skull so above neck and cervical spine? What hormone drugs are you on? How old are you?

What is your PSA now 3 months after radiation and 14 months after starting hormone treatment?

[kensawyerwayland in reply to nobaday]

I’m on Nupron.

I’m 74.

I find out my new psa Friday

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

Your age? location? where being treated? Doctor(s) names(s)? All info voluntary. Your info helps us help you and helps us. Respond in future post and not to me. Thank you.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 03/18/2019 1:30 PM DST

[Stage4PCA]

Stage 4...6 mets -- two to skull...April will be 1 year since Nevada urologist (Whom I don't use anymore -- I suspect he wanted to get home to supper too much!) said, "You know, your PSA went up more that I'd like...They've developed a new blood test I'd like you to take -- its called a 4K...if you score 6 or less (I didn't) I'll never bother you for PSA again..." finishing up chemo --which I've tolerated fairly well...6 in all...the side effects have been problematic, though (fingernails discolored, edema (swelling of the legs) and light sensitivity ...

[monte1111 in reply to Stage4PCA]

I had one met to skull. Wasn't mentioned in last bone scan. So, chemo took care of it? Had the fingernail issue, lost both big toe nails after the chemo but they have pretty much grown back, had swelling of left leg. Developed foot neuropathy after chemo was over. Very annoying when trying to sleep. Good luck.

[Stage4PCA in reply to monte1111]

I'll know in about a month if chemo helped or not...my last chemo is scheduled for next week ...I think scan is scheduled for middle of April. My wife is invested heavily in the results of the next scan.

I have gone through 20 years of getting prostate checked so I could avoid prostate cancer. Well, it was discovered early, I think...so I bought some time to prepare My wife still talks about waking up from a bad dream...

I think PSA was low (4.25), but velocity was a little high(it went from 3.7 to 4.25 in 6 months. So I have intermediate risk cancer (I think Gleason

score was 7). .

[monte1111 in reply to Stage4PCA]

Sounds like things are going well for you. 2 years ago this March had psa 59.9, extensive bone mets (incl. right side skull), lymph nodes, Gleason 9. Lupron, xgeva, 6 cycles chemo, 19 months xtandi, psa now 0.2 Hope your bone scan goes well. Believe I shall have mine in April also. I probably have way more to worry about than you do, but you learn to just go with the flow. Or you would be one serious nervous wreck. Enjoy.

[kensawyerwayland]

I’m 74.

I live in the western suburbs of Boston.

I’m being treated at the Concord MA branch of Mass General.

[JimVanHorn]

I also used Lupron for 6 1/2 years and I have had 72 radiations. I had metastases in my hip bones, but it has gone into remission at this time. I am 73 years old and I wish you well.

[kensawyerwayland]

Oncologist had arranged for new meditation should the Nupron lose effectiveness (just in case). So I was anxious before our meeting today. But my psa, which had been low but was creeping up (13 months after metastasis and hormone therapy, 3 months after the last time it crept up, with resulting radiation therapy), has dropped dramatically (0.08).

[kensawyerwayland]

Since the successful radiation on the prostate cancer in my skull, my psa started up again, and a scan (which confirmed that my skull is cancer-free) showed the cancer was now in my tailbone. I had radiation therapy there a half year ago. My psa is down, though not nearly all the way like my two previous times, and it’s slowly creeping up again. Wait, watch, and Lupron for now.

[kensawyerwayland]

After psa spike to 25 am now on enzalutamide. PET scan showed widespread metastasis in pelvic area (hips, spine). After one month psa to 3.6.