Hi. Diagnosed with PC in June, 1994, Gleason 6, PSA 85.Went on intermittent hormone therapy - Lupron + Casodex -for about 14 years, which initially brought my PSA down to<0.1, but gradually became less effective.. Then tried Casodex and Avodart combo, which sort of controlled the cancer for nearly 3 years and did restore some of my energy. Back to Lupron, which at this point was moderately effective for 2 years, but the PSA started rising again, rather rapidly to 136. Started Zytiga in January 2014, which did bring the PSA way down to less than 50 after 2 months, but caused an extreme rise in liver enzymes and much tiredness and energy loss. When the liver tests returned to normal after two months, I resumed the Zytiga at a lower dose, but stopped it when the tests began rising again. I only got a little of my energy back, but the PSA continued down to a low of 11, staying there for a few months when it began rising again. I started Xtandi in the fall of 2014, and the PSA went down to 14 for a few months. Have stayed with Xtandi, with the primary side effect being tiredness and low energy, But the PSA has been rising - last reading was 66 - while a recent bone scan showed no change in the mets from the one 4 months previously, which did show an increase in the number of mets from 2 years previously. I may have to switch my treatment before long.
Complicating things is that I had a lower left molar tooth pulled recently, and the oral surgeon noticed some "compromised" tissue in the adjoining bone area. I had been on Xgeva for a year and a half, stopping in August, 2015, and on Fosamax for 7 1/2 years for osteopenia, stopping that about 8 years ago. I have been told that it is very unlikely that I have osteonecrosis of the jaw, but no one can say definitively, or if or when I might resume the Xgeva. And a periodontist wants to do a deep cleaning procedure, which might cause more bone exposure. So much for the art and science of medicine.
Les C.
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A good question, but not easily answered. My regular dentist, who is perhaps a little more knowledgeable about Xgeva because his wife is taking it, and was informed of my history with the med and Fosamax, had recommended the oral surgeon for the extraction, because he could supposedly better evaluate the ONJ issue. The referral to the periodontist was because of some deep pockets in the gums of other teeth. The oral surgeon has been checking the slow healing of the extraction area, but I am seeing him shortly because of some recently developed bone exposure in the lower ridge line of that spot. My oncologist is concerned that restarting Xgeva might negatively affect the healing. So, in line with what mshariff wrote (thanks for the reply), I will be on vacation from the Xgeva indefinitely, if not permanently. The next chapter to come. . .
I have dealing with Ostencrosis of the jaw for a while. Very few dentists periodontists understand this disease and how to deal with it. I finally found a Oral Maxilloficial surgeon who had the right scan and method to deal with this. However, you got to give yourself a long Xgeva vacation!
I just met with the oral surgeon, who removed some chips of dead bone from the extraction area. He now stated more definitively that this is ONJ, but he also said that I could return to Xgeva, perhaps even as soon as a month or so, when that area has finally healed. I wonder what your experience has been here: did you resume Xgeva (I am assuming you were on it), and if you had dental work done that eventually led to your DX, how long after that "healed" did you restart the Xgeva. (I get the impression that the area is healed when the surgeon says it is healed.) I am also trying to get more clarification of the risk involved in getting a periodontal "deep cleaning", which has been recommended to me. Thanks.
I have been dealing with serious MR-ONJ (Medication Related ONJ) for a year now.
I did not do any hard work on my teeth, ie, extraction, at get-go. But The left side gum started with minor puss and one tooth started to hurt out of nowhere! Root canal did not work, had to extract the tooth and hell has broken loose since then.
I stopped X-geva, but nobody can really tell you when to start or stop! Its all a crapshoot!
Not every periodontists knows what to do either. Got to find the one who has done this.
In my case, after several tries found one near our house!
They need to have the right scan machine to scan your jawbone. Go in scrape the bone make it bleed, use BMP ($1000- not covered by insurance) to generate new bone, and use PRP to get the gums heal right. This should do the trick, and then one can go back to X-geva, at more paced out intervals (my own theory!). Sadly in my case, since I was in the middle of Kemo too, the gum did not heal. And my periodontists had warned me too! So all the expense went to waste. Things started to get worse. So I waited two months after my Kemo, which was six months after stopping X-geva, to go back in there and do the whole thing over again! It seems to me the surgery was successful.
I plan to start a paced out X-geva injection in the next two months.
There is a very good Position Paper on American Association of Oral Maxillofacial Surgeons on ONJ. Search for that.
Wow! Serious is an understatement. I hope my condition doesn't get anywhere as bad as yours, but it makes clear that I have to do more thorough questioning of the dental and medical professionals I will be working with. You seem to finally have worked your way out of the black hole you were in. Good luck with what you are doing.
Thanks for the lead on the ONJ Position Paper of the Oral Maxillofacial Surgeons. A quick question: what are BMP and PRP? Thanks.
Platelet-rich plasma (PRP) is a new approach to tissue regeneration
Yes, my motto is trust but verify, dentists want to make money. They have huge overhead. So a quick implant is more beneficial to them than problems like ours. My first Maxillofacial actually made the matters worst.
Sorry to hear about the teeth/jaw issues. Let us know how that unfolds.
Your hormone therapy story is very interesting. The lesson for the rest of us is to see how your slightly unorthodox regime really worked for you for a long time.
Les, Interesting history. I'm following you! My question is why did you go to Casodex/Avodart BUT no Lupron? I was going to suggest that to my oncologist last week, but didn't bother, couldn't explain to myself why I wanted this approach. Instead, it'll be back to Lupron + Casodex + Avodart in 3mo.
Second question: why did you go to Zytiga rather than back to Casodex. You have no proof that your hormone resistant, do you? Yes, Zytiga is better but it's also rougher (and more expensive!).
Third issue. Xgeva. I've avoided all bisphosphonates, even though my teeth are now gone. I did use strontium citrate and do believe it worked and I had no side effects. You might want to read up on it. And your doc will also need to read up since it confuses the DEXA scan and requires "adjustments in T and Z values.
Re your first question, it was probably more a quality of life issue that drove it. But also important, the Lupron/Casodex regimen was still sort of working, so there was reason to believe that I could respond favorably to the Casodex/Avodart combo. On the second question, after returning to the Lupron following the failure of the latter, the PSA eventually started rising noticeably while I was still on the Lupron, which is what generally defines hormone resistance. The Zytiga did work, but it was debilitating, and I would not want to go back on it except for a month or two. Sometimes, returning to a previously effective treatment can work again for a while, which I may have to consider. And thanks for the tip on Strontium.
Hi Les, I am interested in your "intermittent" ADT . Were you on a consistent schedule? I ask because I have been on a schedule of 9 months on casodex/zolodax and off for 18 months. I let the PSA go to 20's before going back on. I have bone mets but they have not gotten any worse sines detected. When I am on the PSA drops to <0.5 after the first Zoladex (3 month) implant. I also get a Zometta infusion every 3 months.
When I was on the intermittent ADT, the "on" period was 9 months, which for about the first 8-9 years or so, brought the PSA down to 0.05, or less, in 3 months. The "off" times ranged from 6 to 8 months, and I would go back on the ADT for the first few times when the PSA reached 15, and subsequently when the PSA reached 10 (once, 20) These limits were chosen somewhat arbitrarily. Then, it began to take longer for the PSA to reach 0.05 when I was on the ADT, and when I stopped the ADT, after a total time of over 14 years, it took the whole 9 months to get to a low of 0.11. I then stopped the ADT, and after a delay, started the Casodex/Avodart combo, which did bring the PSA down from 27 to a low of 1.2 after about 7 months. The PSA then gradually rose, reaching 16 after nearly 3 years, when I then returned to Lupron. The lowest it got on that episode of Lupron was 6.1, and it eventually rose to 136 after only 15 months, when I began Zytiga.
I was told you can't reap much from abiraterone alone or Xtandi alone. It has to be taken with Lupron ( or something like that). Of course the side effects suck but you may get a long duration.
When I was on the intermittent ADT, the "on" period was 9 months, which for about the first 8-9 years or so, brought the PSA down to 0.05, or less, in 3 months. The "off" time ranged from 6 to 8 months, and I would go back on the ADT for the first few times when the PSA reached 15, and subsequently when the PSA reached 10 (once,20). These limits were chosen somewhat arbitrarily. Then it began to take longer for the PSA to reach 0.05 when I was on the ADT, and when I stopped the ADT, after a total time of over 14 years, it took the whole 9 months to get to a low of 0.11. I then stopped the ADT, and after a delay, started the Casodex/Avodart combo, which did bring the PSA down from 27 to a low of 1.2 after about 7 months. The PSA then gradually rose, reaching 16 after nearly 3 years total on this combo, when I then returned to Lupron. The lowest the PSA got on that episode of Lupron was 6.1, and it eventually rose to 136 after only 15 months, when I began Zytiga.
i was on fosamax for awhile and began to experience loose teeth and then i had bone splinters coming out my gums. the dentist asked if i was on fosamax and i stopped it, no more trouble after that, everyone in the health field claims that is a rare occurrence ,i think not, i think they have been brainwashed by the manufacturer
You made an informed wise decision for your own good. I cannot understand why patients stay on rx when its side effects are so harmful to their health. Doctors seldom take you off a harmful drug, but instead give you another drug to fix the other drug's side effects. And so the circle begins to broaden. Yes, the doctors are brain-washed to certain extend, but money plays a big part as well. Who is really brain-washed is the patients wanting & believing the doctors are trying to help them LIVE. Yet b\c of the drugs, not disease, the quality of life gets worse!!!! I will NEVER give up ownership of what is helping or not helping my health. If I took my vehicle to a mechanic that didn't fix the purpose for bringing it to him, and he in turn caused more issues by trying to fix what' was wrong with the vehicle, I won't be stupid enough to take it back to him any more.
thanks for this post cause I just found out that I have osteopenia. I recently have gone from taking Xgeva every month to every 6 months per my doctor.
Thanks for this post. We are in a similar situation. First Xgeva shot at the beginning of September. Problems with a molar to clear up first. We will follow this and get back to you later. Mrs. S
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