Guess I can't lurk forever

[rx100m4]

I've been watching this BBoard for nine months and learned a lot that helps me understand what is happening tate. I am 85 y o, diagnosed in late 2017 with PCA, Gleason score 9 (4+5) with a bone met in hip. Since then I developed more bone mets, had a Turp operation that failed in six weeks, acquired a supra-pubic catheter, graduated to score 5+4. Lupron all 2018-9, added Zytiga + prednisone in December 2019. Need pain meds for pain from rib fractures early 2019, learning to balance need for them with supplements to avert constipation they cause. I am in the Kaiser health system. Complicated my situation by breaking my right wrist Dec. 2019.

[ctarleton]

Howdy rx100m4. Sounds like you've had a pretty tough year, bone-wise. You did not mention whether or not your Kaiser doctor may have had you on either of the bone protective agents Zometa (zoledronic acid) or Xgeva (denosumab). If not, you might ask your doctor about that.

Some prescribed structured physical therapy might help reduce your risks for future falls, and help "keep you going", too.

In which Kaiser coverage region do you reside? Some of them have doctors who are more specialized in prostate cancer treatment than others.

How's it going on the Zytiga and Prednisone so far? Are you getting a good PSA response? Etc.

Some of us here also attend some face-to-face support groups for prostate cancer patients. I do. I've met several men in their 80s who have been on Lupron or other drugs at one time or another.

Again, welcome aboard!

Charles

[rx100m4 in reply to ctarleton]

Thank you. I am in Northern CA, North Bay area. No bone protecting meds have been mentioned. No readout yet on 1st month on Xytiga+Prednisone. I appreciate your reading suggestions. Mind you, I broke my wrist in fall, can't blame PCA for that.

[Kaliber in reply to rx100m4]

I’m in Northern California Kaiser as well brother. Fresno Kaiser, Dr Ahad my oncologist. My cancer team at this point is a oncologist, a GP, my palliative- hospice nurse and a couple of imaging specialists. Been on adt since last October, also receiving Zometa for bone repair .

Best of luck to you brother ✌️✌️

[tom67inMA in reply to rx100m4]

Welcome to the forum nobody really wants to join! Several things to keep in mind: Lupron is known to cause osteoporosis which can contribute to fractures. Bone meds can help with that, and at least according to my oncologist, can also make it more difficult for the cancer to invade the bone.

Of course they also bring more side effects, more expense, and can mean more visits to the doctor for injections. I've been debating my oncologist about the frequency of my Xgeva injections. I've had them monthly and the side effects are noticeable for a couple weeks each time.

[monte1111 in reply to tom67inMA]

I was thinking of posting on this very subject. I have been having monthly Xgeva injections for 33 months. Thursday my psa was <0.1 Great. Doctor changed Xgeva to every 3 months. "We find that after 2 years your teeth may fall out." Now, I don't have a lot of teeth left, but if my teeth fell out and my jaw was attached to them, I would be a little distraught. I am sure there are those here that have way more knowledge than I do. Really think this is worthy of a general discussion. Enjoy your teeth (while you have them).

[Hidden in reply to monte1111]

Hahaha.. the hip bone is connected to the thigh bone. Everything is connected. I’m told 4 prolia shots , one every six month is it. I’m getting my second in Feb . 33 shots , one a month? That’s a lot of shots . Wow! I’m awaiting my jaw to heal for an implant to go in. With fingers and toes crossed.🤞 A wing and prayer.

[monte1111 in reply to Hidden]

For goodness sake let's not get into the hip bones and the thigh bones. I have mets everywhere. Great you're getting that implant. You'll be as handsome as Humphrey Bogart!

[tom67inMA in reply to monte1111]

I've tried researching and there isn't a lot to go on. Xgeva hasn't been studied in hormone sensitive men. The insurance industry is comparing monthly to quarterly injections, but no results yet. There is evidence for a half dose every 6 months (ie, Prolia) to control osteoporosis.

And if I recall correctly, ZA + Celebrex has benefit in metastatic hormone sensitive men per Stampede, so the assumption has been the same applies to xgeva, but no specific study to back that up.

If the jawbone is connected to the hip bone, one day we'll sneeze and our entire skeleton will come out, which will solve the bone met problem at least.

[ctarleton in reply to rx100m4]

FYI,

Andrea Harzstark at Kaiser Oakland has considerable experience in advanced prostate cancer, in case you might ever wish to look into any second opinions or referrals for treatment decision discussions within your Kaiser regional system in the North Bay.

mydoctor.kaiserpermanente.o...

Charles

[rx100m4 in reply to ctarleton]

Thank you

[monte1111 in reply to ctarleton]

Thanks for that. May come in useful later.

[monte1111]

I was diagnosed with extensive bone mets (fractured T12) and am "stable" almost 3 years later. Also lymph nodes. Wishing you the best.

[Greatfaith in reply to monte1111]

That’s great news, 3 years stable. I, too, have extensive bible Mets & have been in lupron for nine months. Just curious to know if you have been in Kyoto 3

Years? Thanks

[monte1111 in reply to Greatfaith]

Hi. Don't understand Kyoto. Lupron and Xgeva 33 months. Xtandi 28 months. Hope that helps. Enjoy.

[j-o-h-n]

Now that you blown your cover, greetings rx100m4... Post a future post asking the gang here for better resources regarding you Pca in your area. Give us your location, and doctor's name(s) and treatment center(s). All info voluntary. Thank you....

p.s. we've been watching you.....

Good Luck, Good Health and Humor.

J-o-h-n Sunday 12/29/2019 9:53 PM EST

[rx100m4]

Live in St. Helena, closest KP hospitals are an hour drive , Vallejo and Santa Rosa, where my oncologist is, Dr. Maggie Zeng.. Just sent her a query about Zometa .

[Hidden in reply to rx100m4]

We Iived in Rohnert Park in the 80’s ..