Complacency Upended: Hello to all. I... - Advanced Prostate...

Advanced Prostate Cancer

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Complacency Upended

Emmett50 profile image
22 Replies

Hello to all. I haven’t posted in a very long time but have been here reading and learning every day.

My husband was diagnosed in October 2017 with PSA 34 and Gleason 9 and 3 very nearby lymph nodes involved. He has been on Casodex since March 2018 (PSA then 41) and Lupron shortly thereafter. He had his last Lupron shot December 2019. He will finish Casodex next month. He had 39 sessions of EBRT to prostate and several nearby lymph nodes starting June 2018. He has had minimal side effects from all treatments.

11/22/19 PSA <.01 and T <.12. He had a bone density scan on 12/20/2019 that indicated mild osteopenia. Honestly, he has been very lucky to date. His MO seemed quite excited. Yesterday he told me he has had pain in both hips for several weeks. He never ever complains of anything beyond an occasional headache and some fatigue. I am concerned enough that I asked him to contact his MO ASAP. I am not in panic mode at all but I do feel urgency about this. His reaction was “Maybe it’s the osteopenia. I have an appointment with the MO in mid-March.”

I think we have both been complacent as his experience thus far has been so uncomplicated. He has read absolutely nothing about PCa. I’m the one here every day and following suggested research and reading. I know both too much and too little. Do I push him to contact MO sooner rather than later? I’m almost embarrassed to be asking when our journey has been simple compared to so many others.

I thank you all - both those with PCa and caregivers - for all you share here. Your courage and continued hope mean a lot to me. Hugs, Mary

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Emmett50
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22 Replies
LearnAll profile image
LearnAll

I have mild osteopenia ( T score -1.6 hip) I do not have hip pain.

in reply toLearnAll

You’re lucky 👍

Tall_Allen profile image
Tall_Allen

I think "several nearby lymph nodes" may become problematic as is the duration of Lupron treatment. That is something to watch closely as his T levels rise.

Magnus1964 profile image
Magnus1964

I have pain in both hips and I am thinking that it is probably arthritis. I just had a bone scan and it showed nothing.

in reply toMagnus1964

No osteopenia ?

Magnus1964 profile image
Magnus1964 in reply to

I have had osteopenia for years from ADT drugs.

in reply toMagnus1964

Sorry to hear that . I am now the same . ✌️

Magnus1964 profile image
Magnus1964 in reply to

I have been on xgeva for the past few years. I have not had a bone density scan yet since I started it.

in reply toMagnus1964

Why not?

Magnus1964 profile image
Magnus1964 in reply to

My research doctor never mentioned one.

As one in osteopenia I think he may be the same as I . My hips and si joints are going away. First I had bursitis in left hip . Couldn’t stand with out sharp pains .. I got over that . I’m getting my second prolia shot in a few days. Hip pain cuts us in half . I started bone nutrients also about six months ago and I’ve been more active . I feel better than six months ago .. Maybe prolia would help him also .. complacency won’t help. If he can get active it can help . Walking is good .. Good luck to you both Mary !

Nal, don’t most of us by fifty have some arthritis? I know I do . Old injuries .. happy fishin!🎣

JLS1 profile image
JLS1

I'd at least have a blood test asap, and pay special attention to the PSA and Alk Phos numbers. Always better to be on the safe side, and for peace of mind.

My husband was feeling great after he finished his SOC chemo, so he started an exercise program. A few weeks later, he started having some mild hip pain, which he thought was from working out - possibly pushing too hard too soon. The pain matched symptoms of sciatica, which made sense. Turned out to be PC in his lower spine which required 10 sessions of RT !! I looked at earlier blood test results, and sure enough, a month before this happened he had a slight uptick in his PSA and alk phos, and his platelets went down (the lower spine/pelvic area is where most of your bone marrow is)

Jbooml profile image
Jbooml

I had the same hip pain/weakness.....a week after first ADT shot...lasted 6 weeks...took it to be my joints being stressed by cancer shedding at the tendon/ligament origins and insertion points. rode it out and I’m fine now. Take care not to fall...tell him to use a cane or walking stick..(ski pole)

scarlino profile image
scarlino

Call your doctor and let him know your concerns. Don’t self diagnose or wait for the next appointment.

j-o-h-n profile image
j-o-h-n

Mary, call your doctor NOW if not sooner. Mid March is 45 days,,,, Why wait that long?... If you want I'll call the doctor for you.... (I have a deep and foreboding voice)....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 01/30/2020 8:20 PM EST

Emmett50 profile image
Emmett50 in reply toj-o-h-n

Thank you, Darth j-o-h-n! I was promised he would call today. If he’s didn’t, I may take you up on your offer.

in reply toj-o-h-n

But with a charming demeanor 😌

j-o-h-n profile image
j-o-h-n in reply to

You can say that again.....👀

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 01/31/2020 12:51 PM EST

in reply toj-o-h-n

You were away for a few days and this cite almost imploded without you . Folks were asking where is j-o-h-n ? Glad you’re back on board 🤙🏽🏈

j-o-h-n profile image
j-o-h-n in reply to

Thank you sir. I guess that someone's post (not directed to me) sort of influenced me that I was taking up space here being funny when most guys (especially newbies) we're here to save their lives. So I thought "hey stupid, don't be so stupid" and chilled out and just read posts.... I will try to tone down a bit.... God Bless and beam me up Scotty....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 01/31/2019 1:25 PM EST

That is much pain and suffering for you my man . You are a grizzled warrior.. no cancer is good! Thank god!

Shalom !

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