What do you do if you have an MO who seems like a good guy and is concerned but when it comes to dealing with daily issues is just hot there. Contacting through email, patient portal, physician's assistant is usually ignored and several attempts are needed to get even a simple answer. I do not immediately jump on the horn, just when I have a real question. Such as, why do I need to be on Xgeva (or whatever it is) if my bone density is fine? They make something like $1200 for each shot. Is this why they want me to get it every month?
How do you decide who is working for you or for the establishment?
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spencoid2
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Try to find another MO if you can that is a gentourinary oncologist. I have the same issue and currently looking for someone with more knowledge. As far as the bone density med, not sure from your post if that is what you are taking. If your blood work shows your calcium levels are good and DEXA scan not showing any bone issues I would not think that is necessary. If you have not had a bone scan you should get one. You would not want to be taking those types of meds unless they are warranted. Weight bearing exercise will greatly help.
I had a dexa scan an d it was normal. The guy I want is a gentourinary oncologis. Dr Aggarwall at UCSF. I forget why I had phone appointments with him but he really impressed me.
Sounds like you are on the right track with getting another MO. If you live in a large city or close it is much easier, I live in the boonies and choices are limited. Good luck with it!
I live in the boonies too and love it other than limited medical care. To get to any MO is a 4 hour drive. To get to San Francisco is a 5 hour drive, many more choices there. I hope to hear from Dr. Aggarwal that he will be my main oncologist. Worth the extra hour of driving and he has no problem with telemedecin and if I remember correctly actually answered emails. It seems there is a consensus that it is time for me to change.
If you had/have bone mets Xgeva or Zometa can be beneficial but looking at your home/bio page looks like you dont have bone mets.
Long term Hormone therapy can do a number on bone health but rather than getting Xgeva as a preventative many individuals rather like to wait until if and when annual dex bone scan shows signs of osteopenia.
I have a phone appointment with Dr. Aggarwal in about a month, he is a busy guy. I will do whatever he suggests including waiting for or not for the LU177 trial in October. I do have bone mets, might not have added that to my profile. I had a pathological ( real fluke hitting my sternum not very hard right where there was my biggest bone met, what luck) Also have mets in various ribs. However have good bone density as per recent dexa scan. I like the idea of waiting for ostopenia instead of taking xgeva now.
That is why you come to this forum for additional information. Though you must sort out differing opinions. Some here say that the only reason to use bone-protective drug regimens such as Xgeva or Zometa is to address low bone mineral density on DEXA scans.
I do not agree with them. The purpose of using Xgeva with advanced prostate cancer is to reduce the likelihood of "skeletal related events" resulting from prolonged ADT and also any bone metastasis. This is true even if one does not have osteopenia (weakened bone minerals) on DEXA scan.
The second reason to favor use of Xgeva or Zometa is that it appears in trials to reduce the incidence of new bone metastasis. That is, it may alter the bone micro-environment to make the bones less favorable to establishing metastasis. To me, that is worth the small additional risk of having dental/jaw complications (2-5%). Verses 90% of those with very advanced PC who will die with severe bone metastasis fractures and pain.
hmmm something to think about. i have already had a serious event with a pathological fracture where it was no big deal other than the intense pain. if this happened in somewhere like my leg i would be seriously distressed. so far the bone mets are just in ribs and sternum. i guess if they show up in spine i will be more motivated. ONJ is just so scary.
Is my MO correct in putting me on xgeva on a preventative move despite the risk of side effects?
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