Osteopenia present, but no tx needed 💙
Still lost some bone density tho. Will continue the weight bearing exercise and Vit D.
I believe that there may be a concern with Ca supplements and PCa
Que sera sera, whatever will be will be
Mahalo and Fight on
Randy
Dam! And ouch . I’ve been in osteopenia myself .. Started prolia and bone nutrients over two years ago. Density has improved 10% compared to the two previous dexas of -20& -15 .. la De da! . But now after two years on prolia my rib is fractured and the joints are saying bye bye bye . I feel like all joints and bones are breaking .. I’m trying to stay off of the pain meds for as long as I can . Take care .. Hang in there . Heal up!🤙🏽
Dockam sounds pretty good. You Scott not so good. What's going on with you? At least mine they can pin point and hopefully zap. Best of luck to you both... Hold on and remember Life is Good.
My djd is heridatary all amplified by no t ..
Wondering where you have been Scott. So sorry to hear of the bone and pain challenges. Celecoxib might help some, though I know you have been avoiding it. Got my follow up PSMA scan on Friday. Showed a new lymph node lit up at
The aortic bifurcation retro peritoneal. Will pursue SBRT possibilities for it. Entering the whack-a-mole territory.
Sending you strength and support my friend.
Wtf? That’s bullshit amigo I’m sorry about the node. Wack a mole , how much can a guy take? When my time comes for wack
A mole I just might visit jack Kavorkian style. My intent now is not a long life . It’s simply daily happiness and avoidance of pain . I saw a funny t-shirt in the the early 2000 s on Venice beach board walk. I was in my prime fit and arrogant macho fool. The shirt had a knarled up wrinkled old guy that must have won the ugly face contest. The caption read” Getting old ain’t for pussies” We laughed then . My friends and I. I pray for you that the srbt does the trick. You enjoy life more than most. In my limited knowledge of you . I’d say that you’ve got it going on. My elderly mom
Now 94 told me upon dx “you’re paying for your sins now” she upped the policy on my head at that point to a million dollars and won’t speak to her two sons. In assisted living . Life could be worse . Assisted living and not walking would be hell . Luckily for me I was pain free until
Apc . Hang in there and wrestle Mateo a bit for me ? 🙏✌️
Yes at least I am walking and hiking again without pain. The 2nd surgery worked. So happy again just to be able to move and get outside. There is no hiding from pain. It destroys happiness and peace. Use whatever meds are needed so you can be yourself. A quote I keep reminding myself these days comes from a movie “The Astronaut” featuring an elderly but very much alive Richard Dreyfus. It is: “A life well lived is long enough.” That works for me. So the task is to live each day as well as I can in the given circumstances. Meditation helps too. Would you like me to teach you an exquisite and authentic meditation practice over Zoom? Very easy and natural. Effortless! No cost. This is what I do these days. Paul
Glad you can walk again . I’m open to anything? You are a natural born healer. As long as I can walk everything is ok. Let me talk it over with the boss about zoom . She’s a reiki healer also. Great day friend !💪
Be careful with the Vitamin D - too much robs the bones of calcium in order to increase serum calcium levels. Talk to your oncologist about estrogen patch or toremifene instead.
Would you have to have excessive Vit D on a blood test to have it rib your bones of calcium?
I only can tell you that those who supplemented more had greater loss of BMD.
Actually doing a meet/greet with a new Kaiser MO in a different city, Bakersfield Ca. Will check on estrogen patches for the osteopenia and maybe also to use in place of Lupron/Eligard. Am I correct that the estradiol patches may accomplish both?You are one of the many Sages here on HU
Thank you for your sage advice and research
eje.bioscientifica.com/view...
Randy
It depends on how much estradiol. If you take enough, it will shut down T production. Less might help with osteopenia.
Yours looks better then mine , I think. Maybe the difference of a runner vs cyclist. My risk #s are 8.7% Osteoporetic, 1.1% hip. Mine references my spine which is normal but Osteopenia in the femoral necks. I have not figured out the actual #s yet but will ask my MO this Wednesday when I get my 8th Lupron Inj. I also have low bone mass noted. I took for a baseline and I would have liked a better first scan. Maybe sitting behind a computer going on 30+ years for work didn't help either. I don't plan on making any changes to my workouts, how about you?
Those of us with APC and osteopenia at ANY site should be on Prolia or Zometa. Stay out in front of it early. I started at first BCR in 2009. We know where this is headed, eventually and unfortunately. The other things you are doing are good too.
Thanks I will discuss with my MO this Wed.
Starting my bone strengthening meds on 29th when I get back from family reunion. Also blood tests to see if the doubling time is still an awful 12 days or has settled down with me off Xtandi...Life is Good and I will live it for all it's worth while I can..Doug
So I asked my MO about Prolia or Zometa and he was against either. Since he is convinced I am doing well (blood #s looking better than ever) that I will be off ADT in 3 months. He said I can reverse the Osteopenia with exercise and supplements. He said P and Z do not assist in rebuilding just keeping it from getting worse and come with their own risks. How's that sound to you? I started taking calcium supplement since I had it from before I found this forum and stopped all supplementation. Pretty sure I will go back to most of it when/if I stop ADT since I was on it when my PSA dropped 60 points before I started any treatment. I forgot to ask about Cialis/Viagra for my disappearing junk but will PM him.
I think he is poorly informed on this. You are not just treating osteopenia. You have advanced PC and therefore are at very high risk for bone metastasis and skeletal events such as spontaneous fractures from these mets and terrible pain. These medicines not only strengthen the bones but also make the bone micro environment less hospitable for new metastasis to be established. This benefit is mediated by a mechanism called RANKL. This is particularly applicable to Prolia which is the 6 month dosing of denosumab. Take the following article to your MO and ask for it again.
ncbi.nlm.nih.gov/pmc/articl...
Another reason is that bone strengthening agents, when combined with celecoxib improve overall survival OS in metastatic PC. This was demonstrated in the STAMPEDE trial updated analysis with metastatic PC. This was with Zometa, but it is reasonable to assume the benefit may also apply with Prolia. I personally include both Prolia and celecoxib in my PC fighting regimen.
Thank you, I question everything he says. I will review and bring to MO in September if it seems applicable. I should note I was not dx metastatic. I was T3N1M0 on imaging and attempted biopsy, which was unable to find any nodes in the periaortic area noted mildly prominent on CT Scan. Of course by the time they tried to biopsy a LN I had been on Lupron 2 months and Zytiga 1. They were dumbfounded because they tried very hard and could not find any nodes, period, much less one large enough to biopsy. I did a MRI shortly after that confirmed all info the same as CT but my suspicious illiac nodes had reduced from 10mm to 8 mm. By month 3 my PSA had dropped 99.96% and then took another 3 months to hit undetectable where it remains. I have had no imaging since that last MRI so not sure where I stand on the M status though no symptoms indicating any issues of any kind at this time. Thanks for your attention to this, I do appreciate it and I will continue to investigate and if now is not the right time it may be in the future.
M0 is great. 👍🏼👍🏼 Maybe next scan could be a PSMA scan. I had two nodes that did not look like anything on MRI and CT. Yet they lit up like headlights in the night on PSMA scan. Blasted them with radiation to PLN field plus boost dosage. No new ones as of last week on repeat PSMA scan. Very happy (cautiously) now.
Doubt my MO is planning any new scans at this time. He will wait and watch my PSA and if it climbs then I will push for a PSMA for sure.
Just as a reference, my recent femur T-scores are -1.2/-1.3, a decrease of 8% from my baseline scan two years ago. My lumbar L1-L4 is borderline osteoporositic with a T-score of -2.2. I’m adding more calcium rich foods three times daily and taking K2 to see if helps. Hope yours improves, the running definitely helps.
The doctor who read and reported that you need no treatment was probably not aware that you have advanced PC and are on Lupron. You should be on a bone strengthening and protecting regimen such as Prolia or Zometa. The osteopenia will require insurance or Medicare to pay for it. Discuss with your MO and strongly request it!
More and better wishes and prayers for next time Randy🌻
I had the same sort of result from my DEXA scan. It is what it is. I'm taking a calcium supplement and that about it. Just trying to make sure I don't fall over too often.
Good luck on the falling part.... I was falling at least once a week until I started with my new PT folks... Gals work me hard and concentrate on core muscles... Boy can I sweat even with no T. Falling less...
I've been thinking of getting back in the gym after shielding for the past year. My balance is shot though as I have positional vertigo and chemo left me with a 35% loss of feeling in both feet. Glad it's working out for you though.
Estradiol patches, (E2, the active part of estrogen), can help protect bone density. I've read menopausal women will supplement E2 by transdermal patches to get a blood E2 of around 50 pg/mL for this purpose. Dr. Charles "Snuffy" Myers recommended this to his patients on long term testosterone suppression.
When I went on Lupron, my bone density T-score dropped from "normal" to almost osteoporosis in 18 months, a more rapid drop than most. From 0 to -1 is still "normal". Then from -1 to -2.5 is osteopenia, and -2.5 and below is considered osteoporosis. Those are numbers representing a difference from 0, the mean "normal" value. Mine had dropped to -2.3 when we finally had a DEXA scan out of curiosity.
Prolia helped slow the decline for the next 2 years, until I got off of Lupron. We quit that about a year later, and only checked density again every 2 years.
Today, I'm again on testosterone suppression for suspected recurrence, but now I take estradiol by transdermal patches and I have no concern about my bone density anymore. This reminds me, I really should have another DEXA scan to verify my bones are doing well. I've been on this strategy now for about 2 years, so it's time for another check.
All the best!
I assume you're getting enough sunshine there in Hawaii!
Ask your doctor to prescribe a Prolia shot every six months. I have been getting this shot for 3 years. It works. I went from osteopenia to normal. Anything to help bone strength. Also weight-bearing exercise may help you.
Zometa and Dexa scan
PET Scan Results
Scan Results
