I have been on continuous ADT since 2017 plus chemo and now Abiraterone with prednisone. The last year I have increased back and rib pain. The pain follows after I lift any heavy objects and usually at night when lying in bed. I defiantly have lost a lot of strength as well. I try and work out 3 times a week and stay active. I am not over weight and eat healthy.
When should you start taking Bisphosp... - Advanced Prostate...
my medical team started me on Zometa immediately when they started my ADT. My skeleton is nearly paved with Mets, especially my bone joints. I’ve had 48 consecutive monthly Zometa infusions and just this month switched to 3 month infusions. I have bone joint pains all over that come and go. Pain meds moderate those well. I do call Zometa “ the pain train “ due to all the bone pain I experience for a few days after each infusion.
I wouldn’t start any medication before DEXA scan. Your pain more likely could come from muscles rather than bones. Go on a whole food plant based diet, intensify your weight lifting and get your Calcium level checked. Then make your decisions. I’m not a MD, but that’s what I would do.
I have a different take on bone protective therapies for us with APC. We know our disease is ultimately progressive and probably will die either with it or from it. By end stage, over 90% will have multiple bone metastasis with often severe pain and pathological fractures.
Bone protective medications, chiefly denosumab and zolendronic acid. Are used as treatments for osteopenia/osteoporosis as shown on a DEXA scan. But they also have been shown to reduce those adverse “skeletal related events” in APC. Furthermore, there is some clinical evidence from trials that these medications may reduce formation of new bone metastasis by altering the bone micro environment. And everyone on long term ADT is at risk for progressive ongoing bone demineralization, despite Ca and Vit D use.
On the other hand there is in erased risk of osteonecrosis of the jaw, ONJ, from these medications. But the risk is on the order of 3%, and is lower if you have good dental status and hygiene. So get to the dentist and have all needed work done before starting. In that case, the benefits appear to far outweigh the risks for those with APC, even if you don’t yet have osteopenia.
That is my view and approach: to get out ahead of it and protect my bones preemptively. The lower dose of denosumab, Prolia every six months seems a reasonable conservative approach. Along with regular dental hygiene and care. Paul / MB
I agree that your reply is well said. However, with regard to "But the risk (of ONJ) is on the order of 3%...". Can you cite a source for the 3%? I'm not challenging, I'm simply seeking help. I've researched information on this (mainly trial data, and primarily Xgeva). I find that results are hard to interpret, they vary, and ONJ probability depends on how long you've been treated with denosumab. This is important to me because, after 3 years, and a bone met but increasing ONJ concerns, I convinced my MO to discontinue Xgeva injections. I'm rethinking that decision, but more on this would risk hijacking this thread.
the risk of OJN in osteoporotic women who are otherwise healthy is 1 in 10,000. The risk goes up following dental procedures to 2%. The risk is significantly higher with IV administration and increases with time in the drug. For some reason the oncologists seems to see more of this than doctors taking care of normal people. In patients with cancer receiving IVbisphosphonates it may be 1%.
Dosing of zoledronic acid for osteoporosis/Paget's disease of bone (as Reclast) is generally once per year, while dosing of Zometa in cancer is typically once every several weeks. They are both administered intravenously. The incidence of MRONJ and atypical femur fractures can be expected to be considerably higher in dosage typically used in cancer.
I'm seeing a periodontist for a potential issue. When I asked him about that issue, he said that most issues had arisen with use of Fossomax (sp?), not so much with newer bone meds. Don't know if that's accurate or not.
I am not aware of literature demonstrating this. MRONJ does occur with Fosamax, but less often that with IV forms of bisphosphonates, particularly in the doses used in the setting of bone involvement of cancer.
Looking at this on this topic.....
My sister , 72, had an unfavorable DEXA score, classifying her as osteopenic. So did I, at age 74... t = -1.9 . This is before any PCa treatment. Her Doc suggested she start an Alendronate, not sure if Fosamax or other. Is Prolia, etc known to be superior to the Alendronate? Our Mom at 70 her sister at 91, and their Mom in 80s all suffered hip fractures. Sis has noted no SEs using the Alendronate, but was warned of possible jawbone implications. That scared me away???
Thank you although l find out about such matters too late, but this site continúes to educate in the place of our doctors. My dexa scan showed osteoporosis after 4 yrs of Eligard/bicalutamide. I needed the medicine you mentioned years ago but will begin now.
Hello MateoBeach, I think your'e correct in using a preemptive strike, but have you experienced any side effects from the lower dose of denosumab ? Thanks for the info.
Now that you are castration resistant would be a good time to start Zometa (every 3 weeks) or Xgeva (every 4 weeks). You should have a DEXA scan as a baseline before you begin. Also complete all dental work first, and don't stay on it for more than 2 years at a time.
my medical team kept me on monthly Zometa for 48 Consecutive monthly infusions. Seemed a bit extreme to me ( tho my bone condition was extreme ) and being monthly, beat me down considerably, physically, never fully recovering before the next infusion.
Now they moved me to every three months and my physical condition has perked up considerably. This will be my first Christmas in 4 years that I won’t be Zometa sick.
It may be coincidental or even psychological but now both my upper arm sockets feel like they want to disengage sometimes. My right one especially. I can lift my arm to certain places and I can feel the ball joint trying to slide out a bit, it doesn’t come all the way out but is very painful until it slides back into place and for a bit after. Probably just a coincidence.
Hello Kaliber, you old Warhorse, I hope that you doing okay under the circumstances.
Having read you comments about Zometa, has there been any proof that the medication improved your bone condition or at the very least stopped it getting worse ?
I've researched into Bisphosphonates, I can't find a single one that doesn't have a list as long as your arm of " Possible" and "Probable" side effects, it makes for scary reading.
Recently I got back all my scans, x-ray's etc and went back to see the Dr Bones, after stating that I had osteoporosis and osteoarthritis, a possible fracture at the base of my spine and also my left knee is disintergrating, she stated that she could do nothing to help me, due to the cancer treatment, the only thing she could do was offer me an injection to help replace whats missing in the knee joint. Needless to say it did no good at all.
Before all of this I had a dental examination, I was told my teeth are perfect, then my Urologist put me on a trial run of Risedronate, I literally seized up, another side effect, like the pain you have experienced and have you seen the possible side effects of that stuff.
I'm waiting on a second opinion, from another Dr Bones.
But my question to you, having read your comment, " I can lift my arm to certain places and I can feel the ball joint trying to slide out a bit " was all that pain and sickness worth it, did you even get a reasonable result ?
In the mean time with every painful crack and every grate and moan, I send you my best wishes. ;-D
P.S. My wife said " That won't cheer him up "
haaaay big guy , it’s darn good to see that you haven’t wilted or the rabbits ate you. Yea I’m doing pretty well, considering…. Life’s not perfect but then again it never was one way or the other. Thanks for asking. Say hi to the wife, tell her I’m pretty hard to bum out, yayahahahaya. It’s just a matter of an adjustable positive perspective yayahahahaya.
What you ask is a real good question, I believe. I’ve probably had as much bisphosphonates as anyone reasonably could in the last 48 months , and frankly I don’t know if it did anything for me at all, other than make me utterly sick . No, I haven’t had any scans or biopsies, I’ve been told that no additional scans or things like biopiopsies are going to be forthcoming . I think that the hospice part of my initial diagnosis kinda precludes everything as being rather pointless in the view of my medical team. They think I’m some kind of medical freak , more than anything. When I come in for an oncologist appointment, different doctors come to see and talk with me … I contradict the norm so much they want yo see me first hand.
I pretty much have Mets and / or damage on nearly every bone in my body, I can’t really say if all that Zometa pain train actually did anything for me, but my highly damaged skeleton has kinda stayed stable. Mets deformed my left knee to 3X normal size and I can barely use it still, right knee 2X and my pelvic bone and several lower vertebrae have curly cue , ram horn - spiral looking growths on the sharp tips. My rib cage, lower spine , knees , hands and feet are my major locations of obvious bone damage ….. I’ve always thought that Zometa acted to keep them stable, and they have been mostly. It could be psychological or coincidence but the arm socket thing has surfaced and my hand joint disabilities seem more prevalent now. It’s antidotal, but I don’t really think you could necessarily attribute that to the Zometa for sure. Those damaged joints and bones aren’t going to last forever anyway. Bisphosphonates themselves are supposed to make your bones brittle and potentiate the possibility of femur fractures. I hope I don’t get up too fast or bump into a wall hard and my bones shatter. Yayahahahaya that’d be awkward …. Yayahahahaya.
The pain train is seriously bad, well named “ pain train “ , would I do all that torture all over again ….. yea I think I would. I think the possible benefits that treatment provides are well worth the 5-8 days of awful discomfort SEs after a treatment. I’ve stayed stayed mostly stable bones wise. I’m still getting it quarterly, just had another infusion a couple weeks ago. I think that if you do have widespread skeletal cancer damage, that bisphosphonates are a no brainer ….
I do have a compound fracture on one of my toes, a bit of bone sticking out of the skin. They said it was healing over nicely, and considering all that Zometa in me, they didn’t really want to mess with my bones unless it was absolutely necessary. As long is it wasn’t painful, it would take care of itself. Just tape two toes together until it heals.
Nice to hear from you again Phil, tell the boss hi for me and to keep a sharp eye on you. Yayahahahaya yayahahahaya
Thanks Kaliber for a great reply, I'm really not sure what to do next if offered something like you've been taking and subsequently been through.
I've often read peoples experiences and their struggles and mine fade into insignificance, I asked MateoBeach if he had any particular side effects from his bone treatment, he said he hadn't. I don't want to have them either, I'm frankly fed up with pharma companies " Possible " side effects.
You are something of a legend and I admire your tenacity and plain stubborness or pig headedness to keep going.
I'm going to look at vitamin D, K and other stuff in the meanwhile.
My wife sends you a hug and I'm blooming glad that she's here and your there ;-).
Our love to you and yours ( The Hammer ! )
thank you brother Phil …. If it were me, I’d go ahead and give bisphosphonates a try. Most guys have mild or no noticable SEs.. you can always quit if you don’t like it. Just my imho.
I know this. Stuff will kick my xxx but I hope it brought its lunch yayahahahaya.
Backatcha buddy, it’s good to hear from you and the boss , talk to you later.
How long of a break after 2 years on Zometa or Xgeva before restarting?
Depends on risk. If multiple mets, higher risk of "skeletal related events." If osteoporosis (risk of fragility fractures), reduce schedule, If just osteopenia, it can wait longer, especially with exercise and estrogen patches.
Thank you. My husband has high volume skeletal mets. Thinking ahead, as it has only been about 14 months, but since I have seen OJN in my brother, I want to be cautious.
I am curious about the estrogen patches. Can I take these in addition to the Zoladex and Abiraterone. I am going to make sure I don’t skip my weight bearing work outs and daily walks.
I had an appointment yesterday with the bone specialist. He said I do not need another DEXA scan as the last one I did in 2020 has already shown bone loss. Now that I am CRPC and have been on long term ADT, I should be prescribed Zometa. I should be on Zometa for the rest of my life. They want to give me 120mg every 4 to 12 weeks. I asked about taking a break after 2 years and he said that I should take the drug life long. I found the specialist very narrow minded and not very compassionate. Treated me like I will not be around long enough to be worried about the side effects.
There was some studies that showed that once every 3 months was as good as once a month. The problem with those studies is that they did not follow-up for more than 2 years. (There is a clinical trial now with longer follow-up). Fred Saad, one of the world experts in this, believes that monthly Zometa (or every 3 weeks) is better in the long run.
Thanks for all your helpful information. I will be seeking another appointment with another specialist for a second opinion.
I had a dental check up today and everything looked good with my teeth and gums.
Looking into having the medication covered under BC Cancer. At the moment they want me to pay for it out of pocket.
Who is your bone doctor?
My bone doctor will be an endocrinologist.
What is the speciality of your "bone doctor"?
Not for a couple of years. I believe I am due for one. They said the last scan was within normal limits for my condition and blame the loss due to arthritis. They only do them here every couple of years.
Not sure of you workout routine but I would up it to 5 days a week concentrating on weight training with heavy weight
Do you want to kill him? I am not an expert by any means but one old lady in the swimming pool advised me to do strength training only every second day, and that was 17 years ago.
In order to gain muscle mass you need to recover first. Especially with no testosterone you need even more time.to recover.
I never trained daily with weights only 2 or 3 times a week.
You should never workout same body parts on consecutive days. Rather in groups Back and bi's, chest and tri's etc. Learned that from a personal trainer who recommened 5 days a week and designed my program. Gaining muscles at a pretty good pace and still helping friends move furniture. No pain, no gain
Ok, I understand that now.
I was always training for functional strength rather than the bodybuilder type muscle insulation workouts.
Plus I am to lazy to go into a gym.
I rotate muscles too. I isolate a certain muscle group each workout, Usually 5 workouts a week. I pick rest days on how sore my muscles are. Some compound exercises I do nearly every 'major' workout day. Pullups are awesome and need to be done every other day. I do light dead lifts and walk every day
Currently on 6 months Prolia injections and daily Testosterone Gel . Never felt better since diagnosis. However still slightly fatigued.
As you see in the replies, the Dexa scan first simply makes sense, so you know what you’re dealing with. Take drugs after you know what you’re dealing with- not before- when possible, and this one’s easy.
‘They’ may only do Dexa every couple of years, but that is SOC for the general population. On ADT this is no good. Get one now.
The exercise piece is critical, especially weight bearing. You say . ‘I try and work out 3 days a week’. This type of statement usually translates to ‘consistently somewhat less than that’ , and we don’t know specifically what you’re doing at all.
Remember that ADT wastes muscles unless we intervene with consistency and intensity. The below average effort that ordinarily gets one by won’t work on ADT. Get a trainer if you can afford it.
Whatever medication path you take, lift weights like your continued mobility, balance, functional strength and life itself depend on it, because it does. Never depend on bone strengthening drugs alone.
I'll give you my Xgeva experience. Been on ADT since Dec 2017 ( shots every 3 mos) and started Xgeva 18 mo's into this journey. I never had any dental work in my entire life other than 4 fillings. I go to the dentist every 6 mos as far as I can remember. Three and 1/2 years later I developed ONJ in Mar 2022 and I stopped Xgeva. I am seeing an improvement. An exposed bone fragment broke off the jawbone a couple days ago and I will see the specialist in a couple days. I still don't know where this is going but hopefully will get his opinion soon. If I had to do it over, I would not have started the shots because my tests showed mild ostopenia and I would have started resistance training at that time. I started the Xgeva on the advice on my MO and I should have done more research. If you have to rely on a bone strengthening agent, don't stay on it for more than 2 years. Have all your dental work done prior to starting and have a Dexa scan done. You can have measurable results in your bones with nutrition and resistance training. I go to the gym 2 times a week and have an active life here at home. I hope this helps.
Wow... Another rollercoaster to ride on this journey! Something I will have to tend to, ie, dental work and focus on bone strength, muscle maintenance as well. Only 2 years in on perpetual ADT, have lost stamina and some strength along with upper body muscle. So is a must...
Thanks for posting and contributing to an interesting avenue all us APC Patients must pay attention to!
MO suggested bisphosphonates to my husband. He has already lost 2 teeth due to cardiac med and has suffered many SE from Xtandi....now down to only 1/day until Jan. appt. He refused the bis therapy because necrosis of jaw is last thing he needs at this point. After almost 2 yrs. on Xtandi w/PSA always undetectable it started rising/doubling and tripling since July with last count .27. MO wants to wait until Jan. to see progression at that point and see if it's over 1. He's CR with testosterone at 24 after Lupron since 2018....so it's a NO to bis.
My Dr. started me on Zoledronic acid at the same time I started Abiraterone/Prednisone.
I am the 3% that got the adverse reaction Osteonecrosis.Started Lupron, Zitiga & Xgeva 3.5 years ago. After 5 months on Xgeva lower jaw showed osteonucrosis. Stopped of course.
I "sheaded" lower left dead bone 5 weeks ago. Photo. Now suffering with a dead bone fragment on right side that is on botton on jaw, stuck by jaw, so got abscessed and had to have lanced.
Hope Xgeva helps others. Was a bitch for me.
Carbide: Thank you for your very pertinent post and image. I'm sorry that you are still suffering from ONJ problems.
ewwwww … yuck. Well that trumps my Zometa woes yayahahahaya. Sorry to see that brother, really sorry and scary as well. My friend Mark, Urang on the group ( now passed ) got necrosis of the lower jaw as well ( also on Zometa ) and needed serious surgery to put in a sizable stainless steel plate. I hope you get that cleared up soon with as little discomfort as possible brother. Sending out positive thoughts your way ( transfer of merit ). Dang ….
Sorry for that! I was on Zometa for 2.5 yrs then Prolia for 2.5 yrs. I saw a dental surgeon for pain,he stopped the Prolia and said I had ONJ. I have had 3 teeth pulled in 1 yr.I did look after my teeth.
He has shaved down the jaw bone along with other terms i forget. This has been over 2021 - 2022 I am in Canada.