OsteoNecrosis of the Jaw (ONJ)
- Thread starter VapidLapid
- Start date
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- Jul 25, 2008
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Post-op good thought, VL.
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- Jun 7, 2014
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VL, I know today was a very tough day for you and your SO. I hope things went very well with her surgery. Sending lots of dust and prayers to you both. Hugs
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Lots of dust going out!
VapidLapid
Ideal_Rock
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- Feb 18, 2010
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Thank You all again for your dust and thoughts. It has been a long day. We arrived at the hospital at 5:50 am. The surgery started at 8:30, and was done at 11. He only had to take two teeth. More bone than showed up in the scans was necrotic, and some was sequestered (crumbling) which did not show on scans or in the pre-op consults and examinations. But all in all he took less bone that he had anticipated too. First thing when we got home her face and tongue swelled like a macy*s balloon; in all it took less than 30 seconds to go from normal to not. So then there were ice packs, and ice water and I went out to fill the new prescriptions and to get a chikkin at the butcher so as to make soup. which I did. But she didnt eat any because...still swollen, though it is going down. Gone to bed now. Doctor pleased with the surgery, now we have to see if the grafts take and it all heals. And then come the tough questions. Does she go back on the everolimus trial, or do we stop that altogether since it has lots of side fx and interferes with healing, and could be a co factor in the onj, thought doubtfull. Dropping eveolimus would be fine too, because she would still be getting monthly treatment with fulvestrant. The bigger question is does she go back on Xgeva. As you would expect I have searched and read all the studies of these drugs that I could find. exgevacomes in a lower dose under the name prolea, I think, that is used for prophylaxis against osteo porosis. In the study comparing the two doses ONJ occurred only in the exgeva arm. I have already suggested to the oncologist that perhaps it might be safer to initially treat patients with xgeva for two months as a loading dose to jump start the bone healing, and then drop them down to the lower as a maintenance. So fur us the question there will be to go on lower dose or no dose. If it were me I would say no dose. This drug brought about this condition, and can do it again. SO, I think may want to dose, because the stuff helps with a lot of the pain she has in her spine. Then again, that may be partly psychological; she has been taking celebrex for most of that time too, and whenever she misses her pills by only an hour she says ,oh now I konw why I feel so bad, I forgot to take my celebrex! Well today is three days with no celebrex, and she admitted she did not notice any increase in pain.
Im sure that is way more than you want to know. For tonight we are home and resting.
Im sure that is way more than you want to know. For tonight we are home and resting.
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- Jan 26, 2003
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No matter how hard it has been for you, I am glad just to hear from you, VL, and to know you are home. I hope that gradually things begin to normalize. We are all here for you. You have not told us more than we want to hear, I assure you. You never share anything personal except, once in a while, a bit about Murry. I hope you and your SO can sleep tonight.
Deb
Deb
VapidLapid
Ideal_Rock
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- Feb 18, 2010
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The inflammation is 94% resolved, there is eating of homemade chicken soup, mashed potato, and jello with fresh peaches, nectarines, and creme fraiche (ronnybrook)!*
*the creme fraiche helps with the choking on all the fabulous PS dust!!
*the creme fraiche helps with the choking on all the fabulous PS dust!!
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- Feb 3, 2008
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That is great news VL! I hope she decides not to take the meds if she can help it. It is amazing what side-effects so many drugs have these days. It makes the choice hard between the pain and the consequences. I feel for her having to make it. Much healing dust and prayer for you both!
VapidLapid
Ideal_Rock
- Joined
- Feb 18, 2010
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- 4,272
Thank you all so very much. Ps dust is making the difference in this case. We had first follow up visit with this amazing maxillofacial surgeon. Healing is progressing very well and he is pleased with the results. He was able to graft to cover all exposed areas with her own tissue. In only a week she is gardening, and going to chinatown for dim sum! Kenneth Fleisher is an amazing doctor, one of the very few who have made ONJ their specialty. His innovations in diagnosis and treatment have made a tremendous difference in both the survival and overall quality of life for patients. Most of you know what a disdainful snob I can be, so this praise is not to be taken lightly. That said, I hope none of you ever need to use his services. However, if you do, know that he is a charming man, very gentle, and really is the best. We are not out of the woods yet, but at least our compass is working again.
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