So at my quarterly oncologist visit last week, I learned for the first time that once you've suffered osteonecrosis of the jaw, it's much more likely to recur. Consequently, they probably won't restart my quarterly Xgeva (bisphosphenate) shot, so my osteopenia and crumbling spinal vertebrae will do what? Nobody quite says, though the literature suggests that whatever the situation was before starting on bisphosphenates, that's where you end up after stopping them and maybe worse.
Earlier I wrote a long post about my experience with osteonecrosis of the jaw as a consequence of a tooth extraction after receiving Xgeva injections to shore up my crumbling vertebrae, themselves made fragile by radiation to PC mets. Side effects of palliatives to mitigate side effects, a slow-moving cascade of crappy cancer news.
This has been an 18-month ride during which it has been extremely difficult to get accurate and pertinent information. The oncologists don't cop to how common ONJ is among our population, the dentists don't want anything to do with it, the doctors and dentists don't even share clinical notes with one another. Bring it on brothers, at least here we can tell the truth (whatever that is and as it seems to us in the moment anyway).
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Johnkelsey
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Finding reliable information about bone mineral density meds for osteoporosis is a difficult slog. MOs prescribe the drugs but minimize the side effects, orthopedic docs refer you out to specialists elsewhere because the orthopods make their revenue doing corrective procedures’ and nobody knows how to treat diminishing BMD that is increased by horomone treatments for PCa. BMD loss due to HT for PCa is quickly minimized when discussing the use of HT for stopping or slowing the progression of PCa. It’s a "we’ll deal with that SE later issue" that crushes the patient when their spinal column begins to collapse.
Use estrogen patches or gels to stop the osteoporosis. This is well-documented, in particular by the PATCH trials in the UK, over the past 15 years of study.
Hi. Just tried looking at the PATCH trial and couldn't work out the conclusions, sorry. Please can you advise if you can take estrogen patches plus Lupron together or is it one or the other?
Is your plot contained in Patch trial prelim results......or a plot that you created from numerical data from the trial? I need to look again at those study links you sent.....the answer is probably there, but I've forgottten.....facing RT and ADT, while osteopenic, in 3-4 weeks.....if my bowel movement irregularities don't cause too many targetting problems and KO the whole deal......OMG....they want an empty rectum for 28 sessions, as you know. Kaiser does have the patches in pharmacy inventory...I asked ...if if if some Doc would prescribe I guess???
BTW, FYI, Kaiser ROs don't order fiducials for this RT.....but encouraging that the RO did note my prostate calcifications and that he would try and make those serve as a means to more accurate targetting...of course after I asked about that topic!! Refuses to order Orgovyx....not proven for RT +ADT !!! I'd rather take my chances, and it is listed in NCCN guidelines as OK with RT treatment.... a battle I'm unlikely to win, and a problem when being a Kaiser system patient....tho always point out the good things about their system too!! Incredible record sharing among their Docs....even their dentists here.
You should definitely ask for estrogen patch "add-back" in combination with doing standard ADT to fight osteoporosis. One large e-patch (0.1 mg/24hr), changed weekly, will make a big difference. It will help to prevent hot flashes, too. Your PCP should prescribe that, if your MO won't.
Good luck with that at Kaiser has been my experience! I checked , and their pharmacy does stock some strength of patches.....most probably for female use??? The ROs have their own SOC ......shut down when I suggested starting with Orgovyx...excuse that RT studies not done with the pills, and very likely same response if I asked for patch ADT. AS a supplement to help with BMD..... I'll ask but exxpect nothing positiive on that front either. Never met him, but perhaps my newly assigned GP of 20 yrs experience would be cooperative? Simply not the same as having the flexibility to treatment shop when having traditional Medicare. Liability issues??
My GP prescribed estradiol patches without questioning me. That would be the route I would recommend for you.
There's another route. Contact your local compounding pharmacy and ask for the name(s) of 1-2 doctors that routine prescribe compounded hormones (mostly for women, but also for men). Then, speak to one or both of those doctors. They are typically alternative, integrative types of MDs who understand how important hormones are to good health.
Once you get a subscription, you can order estradiol patches from BlueSkyDrugs.com in Canada. They charge $60 US for a box of 24 of the largest patches (0.1mg/24hr).
Thanks much Bob!! I have insurance only for Kaiser Docs..... a non-profit org HMO that includes Kaiser Docs and Kaiser insurance integrated.....so there is "the Kaiser way". I'll give it a try with my new never-met primary care provider.....in practice for at least 20 years, so he may have encountered a number of men dealing with PCa and the treatment complications!! From studies yo've reviewed, you are of the belief that patches are as effective as drugs for maintaining BMD while on ADT? More or fewer potenti al SEs? Breast problems?
I'm glad that you are going to ask your new PCP about transdermal estrogen therapy.
Estrogen (estradiol) has been used for 84 years to treat prostate cancer. (see attached chart). It was the only castration medication available to men in the 60's and 70' (high-dose Diethyl Silbesterol, DES). But, they discovered that DES caused increased rates of blood clots, and its use was stopped about the same time that Lupron was invented (1985).
Newer, transdermal estrogen (patches, gel, creams, pellets, nose sprays, IM injections) were developed soon after that, with patches first being used in 2005. Transdermal estrogen (TDE) doesn't have the same problems with increased blood clots as oral estrogen does. Note: low-dose oral DES is still be used in select advanced cancer patients.
The PATCH phase I, II, and III trials started in 2015, and 10-yr survival data will be published this Fall (comparing head-to-head Lupron ADT to Estrogen ADT).
Published data from the Phase-II PATCH trial shows that TDE causes BMD to increase (by 6% over 2 years at the hip), compared to a 2% decrease in hip BMD on Lupron ADT.
There are three main side effects of TDE: (1) decreased muscle mass (due to the fact that testosterone is suppressed by estrogen), (2) enlarged breasts (gynecomastia) in most men on high-dose TDE, and (3) increased risk of breast cancer (while still a low rate). But, if you have BRCA 1/2 gene mutations, your risk of breast cancer is much higher. Anyone considering high-dose TDE for replacing Lupron ADT should get their gene status measured. I used prostatecancerpromise.org. They mail you a saliva test kit and measure 30 different genes FOR FREE.
You might want to consider a compromise if your MO wants you to start Lupron ADT (or Orgovyx ADT). That is to prescribe low-dose estrogen "add-back" in combination with Lupron/Orgovyx ADT. That would be one, large estradiol patch applied to the hips or buttocks and changed weekly. The proper dose is 0.1 mg/24hr of estradiol. It's called "add-back" because you are replacing the estrogen lost due to testosterone suppression (remember, estrogen is made from testosterone by the aromatase enzyme). Low-dose estradiol helps to reduce hot flashes and fights osteoporosis.
The PATCH study used a high-dose of estradiol, i.e., four, large patches at a time, to chemically castrate men. the main benefits they found with high-dose TDE was: lower blood glucose, improved lipids, increased HDL, lower blood pressure, increased BMD, fewer hot flashes, and less fatigue.
Even if insurance doesn't cover it, it's very inexpensive. I order my patches from BlueSkyDrugs.com in Canada. They sell a box of 24 large patches for $60 US. That's $2.50 per patch, which lasts 1 week. That's $10 a month for low-dose TDE. Not bad for a major prostate cancer drug!
Thanks again mucho Bob ! Planning appointment in 2 hours....and 1 month Lupron to start....ugh!!!!!!!!!!!!!!!!!!!! I will use your help in followup on E2 in next few days. You implied low dose has minimal breast complications? I've read that men can have breast RT as a preventative...another option is some drug I think???
Have you considered switching to Orgovyx instead of Lupron? It apparently has fewer side effects, and definitely has much faster ON/OFF for testosterone.
The absolute risk of breast cancer of men taking supplemental estrogen is still very low, but the relative risk increases by 2-5 X depending on which paper you read. 2-5 times a very small probability is still a very small probability, in absolute terms.
The main concern is if you are BRCA 1/2 positive for gene mutations. Then, the risk of BCa increases significantly, and it can reach a risk level similar to women. Anyone considering taking supplemental E should get a gene test done. I've used prostatecancerpromise.org with good success. They mail you a free saliva test kit, and they will test for 30 PCa relevant genes for FREE (including BRCA 1/2, ATM, etc). No strings attached, no credit card, etc.
The risk of BCa is also dose dependent. Doing low dose E2 (1 patch at a time) will have a much lower risk than doing high dose E2 (4 patches at a time). When I start doing high-dose E2 therapy, in lieu of Lupron ADT, I plan to get an annual mammogram. Fortunately, my BRCA 1/2 gene status is negative (no gene mutation.).
Since I already have some gynecomastia naturally, and will be doing high dose E2 therapy, I plan on getting 1-3 radiation treatments by a high-energy electron beam (not X-rays). The electrons have a short stopping distance, less than 1 cm, so no radiation penetrates the chest into the heart. High-energy X-rays would penetrate much deeper and potentially cause heart problems.
There is a drug you can take, Tamoxifen, I think, that prevents gynecomastia, but I've read that it can interfere with the beneficial effects of doing estrogen therapy. So, I don't recommend it.
Breast surgery is an option for severely large breasts, but that is very rare in men.
After you’ve been on low-dose TDE for, say, 2-3 months, and are tolerating it well, then you can ask your PCP or MO to increase the dose gradually over 3-4 months to the PATCH trial level, which is 3-4 large patches at a time. Then, you will be able to quit doing Lupron ADT. Also, by then, the Phase-III PATCH trial will have been published, and doctors will be comfortable prescribing high-dose estrogen.
It is not that easy here in the uSA to dictate to Docs what treatments they will order.....you are in Canada, and it is that easy there? For example, my fairly new RO...MIT grad and Harvard med school, want conclusive randomized studies before agreeing to non-SOC care. Certainly our kaiser insurance makes coverage decisions that way also!!
So, there are not the type of conclusive studies of even low dose E2 +RT + ADT treatment combo that meets general standards as far as most Docs here. I mentioned the Patch sudy to the RO yesterday.....he said even those results will not be mature enuf to evaluate LONG_TERM effectiveness of that approach. I can understand that point of view.....offering someone an option that does not have the same degree of evidence as another proven approach with much longer history.
Orgovyx would not be covered by current insurance either.....must first "fail" standard agonist. When we switch to Medicare, more likely to be covered...the RO even asked if I would want to wait until we have Medicare coverage before doing RT...that would further delay treatment until July-August, and I have already delayed since 2021 with Gleason 9, and now larger primary tumor and associated increased PSA...keep waiting ??? May have aready waited too long!!! Oh well, at least recent PSMA PET find no activity anywhere but prostate......and nothing more shown on last week's MRI...RO was looking for ECE !!! He will do whole pelvic RT, with focal boost to main tumor area......one or more studies have shown results equivalent to brachy boost when using focal boost.
Much to my delight, the 1 month Lupron dose was a piece of cake...great nurse!!! I am paranoid when it comes to shots!!
What is this high energy electron beam machine? All I hear about here are photon and proton beams from the respective accelerators. My RT will be by VMAT......2 minutes per session for 28 sessions.
As for your high dose E2 as a replacement for Lupron,etc...quite sure even Medicare here would not cover that.....if you could possibly find an RO who would agree to that. I guess you are saying it is cheap enuf that you would pay out-of-pocket?
Has the PATCH trial published any preliminary efficacy andtoxicity results?
I'm actually living in Albuquerque, NM. Maybe you're thinking of Prof. R. Wassersug in Vancouver, Canada? We have the same initials.
Regarding the option to postpone treatment until Medicare kicks in in July-August, that may be a good option. I'm in the same boat...I'm postponing my RT until July (but because I'm having low back surgery next week, and need a month or so to recover before doing RT)
If you do postpone doing RT, you may want to consider starting Dutasteride. While it's not a cure for PCa, it definitely slows the progression of the disease and will buy you extra months. A paper by Moore measured with a MRI machine how much a tumor shrunk while on Dutasteride or Placebo. After 6 months of treatment, the average tumor volume shrunk 31%, compared to an increase in tumor volume of 17% for placebo. Other studies show that dutasteride reduces PCa by 40% [range = 23 to 51% reduction].
My own PSA dropped 76% after being on dustasteride monotherapy for 5 months (no ADT, no RT, no RP). see attached graph.
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Regarding estrogen patches, I'm paying out-of-pocket for them. I'm buying them from Canada, and they cost $2.50 per patch, which lasts 1 week. So, low dose E2 costs $ 10/month. Not bad! High-dose (4 patches) would be $40/month. My PCP prescribed it, and my MO said that she was happy if I did it on my own, but that she couldn't prescribe it.
There are early Phase-I and II results from the PATCH trial that demonstrate good efficacy and low toxicity. Was there something in particular that you're concerned about?
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The VMAT RT uses high-energy (6 MeV) X-rays (photons). They make them by accelerating electrons in a LINAC to high energies, and then crashing them into a rotating tungsten target, where they spit out X-rays. So, to just use electrons to irradiate breasts, you slow down the electrons to a lower energy, and then skip the step of hitting the tungsten target. That way you only get electrons coming out of the LINAC. The electrons have a very short stopping distance, so they are good for irradiating surface things, like skin cancer and breasts. X-rays penetrate much deeper....through the entire body....which is needed to hit a prostate that is deep inside the body.
I know my dentist is very concerned with my established implant and my taking Fosamax. The screwed holding my abutment in is stripped. There is no way of removing the implant should it become problematic other than to cut my jaw open. Healing may never occur.
My brother had ONJ from Zometa. He had had a lot of head and neck radiation so they thought that was a contributing factor. (He had a massive area of PC mets in his cervical spine.)
He stopped the Zometa, and used a prescription mouthwash twice a day for the rest of his life, and his ONJ remained stable. He had no issues with fractures/osteoporosis. He was not allowed to try any other meds for bone density.
I’m so sorry you have been struggling with ONJ… it’s frightening
I believe that Xgeva is the same as Prolia … which my understanding is a medication that if you stop it without a relay drug you can be at risk for spontaneous fractures..
Have you met with an endocrinologist that specializes in Osteoporosis/bone density treatment? Would you be a candidate for an anabolic bone drug like Forteo, Tymlos or Evenity?
I started treatment this past December with Evenity, a monthly injection, that is an anabolic bone drug shown to especially have good success with building bone in the spine. It’s a 12 month course of treatment… no side effects so far …my lumbar T score was -4.3..
Spinal Mets is a whole different ball game of course and my experience perhaps has little relevance to this discussion …
Thanks for this info. Yes, I am seeing an endocrinologist at Fox Chase and will be discussing all of this with her. I'm on the endo track bec of another nasty ADT side effect, my adrenals have mostly shut down so I take prednisone and hydrocortisone to replace cortisol.
I spent 8 days in hospital back in early December 23 for ONJ caused by XVEVA injections that I had over two years. They finally put a pick line in me and sent me home so my wife could give me the antibiotics for another month. Subsequently I have had to go back to hospital for two more lesser ONJ infections which they treated as out patient by putting a drain on the outside of the bottom of chin to let infection drain into a bandage for a few days plus amoxicillin pills for a week. Oral surgeon says expect more infections in future since dead jaw bone is exposed with no gums on it on inside of mouth. He also said he will not do any jaw operations unless there is a major catastrophe with my jaw. He said it will cause more problems then you can inagine. I have two implants in this area that are now exposed. I brush my teeth five times a day and rinse with prescription mouthwash after. The exposed jaw bone causes side of tongue to be very raw and becomes uncomfortable. I have over 12 bone Mets and just completed 11 doses of Chemo with more on the horizon . Fortunately I have had no bone pain so far. Obviously I am not on XVEVA any more. To compensate I have been eating a lot of ICE Cream. lol
yikes I've heard some horror stories but that's a whopper, thanks for sharing. Hoping the ice cream is some compensation - I see jolly fat tubs of the stuff in my near future as well.
The best route is to ask your PCP or GP for "add-back" low-dose estradiol patch therapy. They will likely approve that for treating osteopenia (as it is used for PM women).
There's another route. Contact your local compounding pharmacy and ask for the name(s) of 1-2 doctors that routine prescribe compounded hormones (mostly for women, but also for men). Then, speak to one or both of those doctors. They are typically alternative, integrative types of MDs who understand how important hormones are to good health.
Once you get a subscription, you can order estradiol patches from BlueSkyDrugs.com in Canada. They charge $60 US for a box of 24 of the largest patches (0.1mg/24hr).
People have funny ways of assessing risks. Take ONJ for instance. Its given that people with APCa have cancer and those on ADT will have osteopenia, right? The trade-off is fragile bones vs ONJ. When elderly men get an osteoporesis broken bone, it is said MOST will die within 1-2 years from being laid-up long term and pain etc from the break. Such breaks take a very long time to heal, if they ever do. Men with APCa on bisphospenates or Prolia are said to have a 1-15% odds of ONJ, but here is the key part. ONJ is treatable and I have not read about it causing most to die 1-2 years later. Elderly bone breaks are far more often fatal with miserable QOL. To me its a no-brainer. And PS and BTW, on ADT you have almost zero chance of building bone without meds.
Having APCa means that almost every decision has good/bad issues regardless. The same applies to osteoporesis.
Good point Derf. Everyone is different and has different experiences with Prostate Cancer and the various drugs we take to fight it. My ONC sent me to my dentist to get written approval to be able to get Xgeva. I was told at the time about 4% chance of getting jaw problems from the drug so I went with it. The current oral surgeon treating my ONJ thinks the number is a lot higher . I should have questioned whether I really needed it since I played a lot of rough sports and had a few motor cycle and car accidents and never broke a bone in my life. Also the oral surgeon who did about 10 implant 25 years ago said I have very strong jaw bones and said I probably will never have a problem with them. Like I said I have many Mets including three on spine so fingers crossed at this point. I am certainly not recommending anyone stop using these bone drugs.
After 18 months on Lupron, my PSA was undetectable and my MO agreed that I could stop ADT. Then 8 months later I fell in my house and I had a compression fracture of L5. I got a Kyphoplasty procedure to repair my compression fracture. With testosterone coming back my bone density is BACK TO NORMAL.
Just want to point out that Xgeva (denosumab) is not a bisphosphonate. Xgeva is a complex molecule, a so-called monoclonal antibody, whereas a bisphosphonate is a relatively simple molecule containing phosphorus, as its name implies. For a comparison of denosumab and a bisphosphonate (zoledronic acid), see this paper:
Thank you for this info and for the study… it suggests significant differences in onj risk between the two drugs, the sample was not huge nor uniform so nothing conclusive so I’m not going to repeat the findings here, if this topic interests you please do follow the link from pe43
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Side effects of withdraw from prednisone and can a oncologist give Lupron/xgeva shots? 
Timing of XGeva & Radium 223. 
Help on next step - Chemo or Xtandi?
Teeth extraction while on xgeva
