Those With MBC Many Years—Scan Frequency? Zometa?

Divine, I can't help as much as I'm not stable the way you are. (Congratulations on that continuing, BTW!)

Back when I was NED (three years of bliss) we did cut Zometa back to every three months, and we scanned about once a year. Generally speaking we scan if there's cause. New symptoms, rising tumor markers [since they seem to work for me], clinical trial. We once went more than a year without scanning. It would have been more than a year this time too except my onc panicked over my liver function tests in January.

So long as you do blood work every so often and keep an eye on yourself you shouldn't need to scan at all. You obviously have a very slow growing cancer if it grows at all.

My guess is your onc doesn't want to mess with what's working. LOL. Usually that's our point of view!

Divine, Seven and a half years! That is phenomenal! First of all, congratulations!! That is so awesome!

Since you haven't had progression, I would imagine that its hard to justify all of the Zometa and scans. I can see that from your point of view, however, from someone who is six years out, and has had progression (bones only still), I would be hesitant to go a whole year without scans and Zometa. I was not aware that Zometa could cause Osteo necrosis in the jaw. I thought only Xegeva had that risk. But speaking as someone who had 3 years with Faslodax and Xgeva without progression, then came off Xgeva due to Osteonecrosis, I would be hesitant to go to once a year. I am grateful that the Xgeva helped me for as long as it did! I have scans every three months, sometimes sooner, sometimes later depending on how I'm feeling. My tumor markers are rarely an indicator for me. Mine were 19 when we discovered the bone mets all over the place, so we rely on how I'm feeling. So for me, I would be hesitant to go a year, but you know your body better than anyone, so if you are comfortable with it, you should do it.

I know that whatever you decide will be the best decision for you!

Hugs and prayers,

Claudia

DivineMrsM, Xgeva is way more expensive than Zometa. The cancer centers also get more money for infusing than giving a shot. [Overall Zometa is less expensive even with the infusion costs] In theory I should care about the societal burden of the cost of care, but when it takes two additional hours of my life each time I decided I was more important.

When we get to i.v. chemo (sometime this fall I suspect), I'll switch back to Zometa. Since I'll be in the chair anyway. . .

Very similar diagnosis date (6/11) and cancer characteristics. I had zometa monthly for 5 years and was scanned every 2 months for the first two years then went to every 3. I recently switched from a local onc to a large university hospital one. I have necrosis of the jaw and in the bones of my skull, and eye orbit. The new onc believes I was over treated with the zometa.and have been overscanned. He states his timeline would have been to every six months by year 3 for both scans and zometa. Easy to say that now since I have been stable since 2013. He is of the treat it like a chronic condition, until it isn't mindset and thinks to seriously consider long term effects. He watches kidney and liver function as closely as he does scans (and does not use or value tumor markers). I understand the changes he has made including eliminating some of the pain meds I was on, but he has a long history to help with how my cancer behaves, my first onc did not. Even with the necrosis I don't think my treatments were wrong because I am still here living a mostly normal life.

Personally I would not want to change both things at the same time. If bone treatment is decreased, I would prefer to still have frequent scans for at least a year or two to make sure the reduction in meds didn't wake up a sleepy cancer.

Yeah for sleepy cancer. Hope it stays that way.

Hey Divinie 

Weighing in a little late.  I was on Aredia for about 5-6 years.   I would get it every other infusion so every six weeks.   After about three years, I asked if I could put more time in between infusions.   I was worried about my kidneys and since I had been NED it seemed reasonable. First we moved every 12 weeks, then we did it every six months and then once a year.  Finally she let me get rid of it all together.  I have had two bones density tests too. The first one wasn't bad.  The last one I got after a few years exercising religiously showed great improvement.    I am only weakly ER positive but my oncologist always told me that the ER factor was heavily associated with bone mets.    I agree with you that exercising and losing weight are really good things that may have influenced  your scan.  

With the goal to live as long as possible, it seems very reasonable to try to limit the harsh drugs where possible.

Jen

Divine what have you done regarding Zometa? I had 2 shots of Xgeva back in June and July 2019....got hives..then got infusion of zometa in Aug or sept 2019 (can't remember) then I asked my new MO to stop it bc I was afraid of the jaw issue and of breaking bones...saw 3 people on FB with broken necks, their MO's said its like cement it works great but then after years can crumble like cememt. I only had a met in my left hip and left sacrum...then after a year this July 2020 they found mets in C7 I thought I fractured my sacrum last week so I asked if we could re-start the Zometa and she was happy and said yes ...but now I am rethinking it ...bc I did an X-ray and they are not sure I did fracture it and its much better in only 3 days...plus I scan tomorrow see her Monday for results...I am so on the fence. I just heard from women on FB that got the Jaw issue after a year and even less on it Any thoughts?

I am feeling like I want to do once every 6 months...its just getting her to agree.

hi all, I read your posts and like this thread, and am glad this thread is active. I have the same concern as some of you mentioned. I’ve read many articles and studies about bone Mets and how denosumab and bisphosphonate work, but really these drugs ie xgeva and zometa prevent progression?

I was told these drugs are one more in the anti-progression arsenal by changing the bone matrix to make it challenging for cancer to get a hold on the bone.

Welcome, IrishJewishWaspMBC-

We're so sorry you find yourself here, and we're sorry to hear that you're not feeling supported by your medical team. We know that can make an already difficult situation that much harder! You've come to the right place for support and guidance here.

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