Bone Medication

Wondered if you could all give me your advice, I am on Zoladex and Zytiga as first line treatment my PSA is great at the moment I have metastic lymph spread no bone mets yet. Is anyone having bone strenthening medication without bone mets, a friend who has prostate cancer has insisted on having it and says I should. My oncologist says he can run a bone analysis and do it if necessary but is there any evidence to say it can prevent bone mets. Thanks All

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  • Can't hurt if you can afford the copay. Not a good idea if you need extensive dental work. Good luck.

  • When I was on Lupron, casodex and avodart (ADT3 )for 13 months I was also given prolia shots to help offset the effect of ADT3 on bones and it was effective. Now I’m back on ADT3 due to a met on femur and I’m taking xgeva shots monthly, a stronger version of prolia.

  • if you are on h.t, good idea to have bone density test done at some point. Years ago I took fosamax. I feel keeping bones strong and silky smooth is important to keep clinging pc cells from nesting there.

  • Thanks for your answer

    Will get on it on Monday👍

  • Bone loss and osteo is a real thing .Im on a trial so I get bone density scan each yr. I lost 15% so far. Wonder if my bones will turn into pasta in time. You still on foasamax? How did you feel , any. Ad side effects? Thanks!

  • Apollo,Dr Sartor spoke of a seed and soil ,My understanding was that the zometa or xgeva made the bone infertile for the mets to grow. Make sure all your dental work is up to date , You will not want to have a tooth extraction while on these meds. Here is a paper on bone medication from PCRI, pcri.org/insights-blog/2015...

    Dan

  • I think I'm in deep doo-doo. Not only did I start Xgeva, I broke a tooth down to below the gum line, a month after. I'm a bit leery, but I will make a dental appt. this week.

    Joe

  • You should make sure you dentist knows you’re on Xgeva.

  • Thanks Ron, They're aware already.

  • Joe, Maybe he can put a crown on it, That happened to me years ago on zometa, he just put a crown on it.

  • Not on this one Dan. Would you believe it's actually a wisdom tooth. I still have them. This one has been filled before, and the tooth broke long ways. And, for some reason it doesn't hurt.

  • I’ve had some dental problems since treatments and my belief is that ADT strips our teeth also.

  • I am having my teeth cleaned every 4 months while on xgeva, I was zometa for many years early on, I took a break after about 6 years and after a year off had a 3 successful extractions, when they healed I went on xgeva.

  • Why no dental procedures?

  • Xgeva has worked wonders for my husband who has bone Mets. Doctors said a miraculous healing of his bones. Best wishes :))

    Jackie

  • That's great Jackie,

    My Onc has a different theory. Xgeva has done the same for me. The three mets that were visible last year, now they are not recognized. I posted here about it a little while back. When I last saw him I asked about it, and he told me not to be fooled, just because we can't see them, doesn't mean they're not there. As he said this to me, I thought, so, if I pop a pimple, and it heals, it's really still there, you just can't see it. Yea, that's it.

    Peace, Joe

  • Pc is a devious animal that hides in wait if you are lucky enuff toBe without visible signs. That’s where I’m at now. The phycology of this inside of us just waiting patiently for and opertunity to take us out. What a thing to have on our heads. On the other hand , most of us over 50 are dealing with heart disease,blood pressure , diabetes or some other thing that will eventually kill us . I ve heard more than one of my medical and holistic friends say “ none of us are getting outta here alive.” Life is short ... enjoy!,,

  • Thanks Joe!! As long as they stay dormant.....WAHOO ;))

  • But LG's doc sounds like he's a lot more confidant than mine does.

    My guy's too old fashioned, but the co-pays right. That's another of my downfalls, I'm a cheap bastard. But, he's doing me good.

  • As long as he's doing you good Joe :) We're still kind of floating around until we find a doc that we're comfortable with. Hoping to find comfort this time with only having a co pay....unlike cash with Dr. Myers.

  • I can't imagine the cost Jackie? I bitch if it's more than $15. Only because my co-pays have dropped a lot. If I go to Penn it's $50. Still reasonable, but getting to the other side of Philly from where I'm at, is not something I want to do. They have some here in South Jersey, but for me only a Uro.

  • Jackie, I understand the 'floating around'. Sometimes you just have to FLOAT. It's too exhausting to do otherwise. I'm very happy to hear you all are on 'vacation' with such good results. This IS what we have..... Enjoy it.

  • I do think at this point we are certainly ON VACATION Genie :)) It can become just too exhausting. Thankfully we're able to do this at the moment. Hugs and wishes for ALL to be able to vacation at some point.

    💚 Jackie

  • Any side effects to Xgeva?

  • None on my end, LuLu. Maybe the wait to get it. Unfortunately, my Med Onc's staff doesn't have the forethought to take the shot out of the fridge until I show up at the Infusion and shot area. Maybe I should tell them myself to take it out when I get there. They''ll really like that. And, there is one issue, there is some pain when the injection is given, because it's about a lot of medicine. That's it.

  • My onco and my urologist have never even spoke of nutrition or diet. Most stick to there box. I asked my uro upon diagnosis about diet and alt treatments. He basically told me eat whatever you want. Kinda like doesn’t what you do you’re screwed.so I went to the Nat onco and he said “ oh no that’s bull”” It does matter what you eat and put in. They told me 39 months to live. With Adt & chemo which I did RT instead. Now 1 yr no vis able signs. They say that this type of remiss can typically last 4 yrs but maybe I can extend for 5-6-7 or more. Who knows I strongly feel that if I had not made all the dietary changes that I would have fallen into their dismal stats.

  • LuLu,

    I have written you before. No mere mortal knows how long you are going to live. You are statistic of one. Keep up on the research, and continue to have good doctors, and go for the long haul.

    Rich

  • I have respect for your post.You’re a good man Thank you! Good luck !

  • Hi Lulu,

    Back when I changed my diet, I found that most foods I liked I had to cut out. First was processed foods. Like bread, except bakery products like baguettes, fresh rolls, etc. No snacks, no deli meats, no red meats, no dairy? Just take a look at what's in the stuff in your cabinets. That's the stuff I cut out.

    Then I said screw that. If I want a burger, I make it, and put it on a deli kaiser roll. Basically, I eat what I want, but minimize the processed foods. And, I feel pretty good, except for the wimpyness.

    Joe

  • Sound like me, joe!

  • None that we're aware of Lulu.

  • Wow that’s great! Thank you.

  • Zometa is good for keeping bone density in good level and also good to prevent bone metastases. you need Calcium + vitamin D3, while Xgeva is a treatment medicine .

  • Vitamin D-3 & K-2 together yes! But I’m told not to use calcium supliments with APC..

  • I think that taking Calcium supplements would not matter when you have bone mets. I would think anything to deter the thing from getting in your bones would be OK. I may be wrong, but I've been taking D3/Cal for a while now, and if it's not cool, Ughhh!

    Joe

  • You may know more than I. I’m no doc .my Nat. Onco says no calcium sups .google it. Many studies point to a link in high calcium to APC and they say supplementing May advance the C. Check it out I hate to see you harming yourself. Please let me know what you find.

  • Xgeva and zometa deplete our Calcium, and require Calcium Supplementation,also adt causes osteoporosis and calcium can help with that, as can Vit D. Vit D helps the calcium to be absorbed in the bones. Vit D has a long history of beneficial studies. I think it is important to make sure both are in range on your labs. Calcium is in the CBC lab we all get every time.

  • What Dan said.

  • I don’t have any bone mets yet. Major fear for us that don’t have it yet.

  • Don't dwell on it Lulu. I had got a few bone mets, seen last year on imaging, and I was so concerned about the coming pain. My most recent imaging shows nothing. Not one bit of pain. We are all that different.

    Joe

  • Thank you sir. That’s in the back of my mind. In front is DJD , slated probably sometime in the future for hip replacement .x-ray showed degeneration. Next week see the ortho. Have you heard of anyone with APC putting in a hip. ?

  • What is APC?

  • Advance prostate cancer.

  • Thank you Lulu :)

  • In reply, haven't been on it for some time or abone density scan since last one was excellent. Restarted H.T. 3 to 4 months, psa 1 and. Haven't heard of fosamax being used for some time. As far as calcium its in everything People aree overdosing on it. Vit d3 and k2 is the way to go for me and weightlifting. Rocco

  • What form of calcium? Best from food?

  • I get a Calcium/Vit. D supplement at the CVS. And, I eat eggs and drink whole milk.

  • Very good.

  • I had a few bone mets last year, that were not seen on my most recent scans. I started Xgeva 11 months ago. Good stuff, if you ask me.

    joe

  • There are bone health supplements and vitamins that are a good idea when on ADT / hormone treatments. Some have 'bone health' in the name. Look for vit K2. Vitacost has them. It doesn't all have to be prescription meds.

  • Do these nutrients you speak of contain calcium ?

  • "Calcium Bone Maker Complex" sure does. You can get vit K2 with nattokinase which does not include calcium.

  • Thank you.

  • I’ll check out nattokinase. It’s a form of soy .Sounds promising .Soy is good for Pc , especially for hot flashes I’m told. Thanks!

  • I have been advised to consider Xgeva, but I'm sceptical. I have osteopenia, a pre-cursor to osteoporosis, in my lower spine (where I have a met) so bone health/strength is a very important consideration, but I've read on so many forums where lots of guys have had ONJ (oste-necrosis of the jaw or jaw-bone death) that it is a big worry. I've also heard of guys getting very elevated calcium levels in their blood which can be fatal. I've read also that the research shows that up to 1 in 5 can get ONJ, which is very hard to treat.

  • No, there is no evidence. Actually, there is evidence that Zometa will do nothing to prevent the future development of bone mets or extend your life. See my blog post at cancerABCs.org or specifically at cancerabcs.org/new-advanced....

    Not a part of this specific trial, but Zometa does have some bad side effects when used over an extended time, so with evidence that it will not help you why even go there?

    Joel

    CancerABCs.org

  • Joel , how about xgeva, or does that just delay time to SRE?

  • There is no way to really answer that question since Xgeva has never been evaluated in men with castrate sensitive PC to see if it will delay the original onset off bone mets.

    I do not know of any reason that it might be expected to be effective and perform how you want it to in your case.

    If you do have bone density loss that is significant then zometa would probably help with bone density, but it would not delay the development of bone mets

    Joel

    CancerABCs.org

  • I am currently on xgeva, have not been on zometa for about 4 years, maybe since that study you posted in abcs came out

  • Being on ADT embarks us on the osteoporosis train. There are 2 classes of protective drugs, but both classes have not been proven so far to protect from implantation of metastatic cells. They should though slow down progression of osteoporosis. Xgeva which is in a class of its own has been proven though to help prevent spinal cord compression problems and bone fractures, but I'm pretty sure it remains prescribed only for men with bone mets. I have been on Xgeva for about 7 months now, and have had no major side effect, although the ghost of ONJ (rate but serious jawbone problems) keeps haunting me. I have had bone scan that actually show healing of bone tissue so it does work in my case anyway. As for the other class (Boniva, Fosamax etc), I can't see why you couldn't be put on them as a preventive measure for osteoporosis. Even though it seems intuitive that stronger bones would help prevent metastasis, it just hasn't been demonstrated yet.

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