bone mets survivors
Comments
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Pat, did your doctor put you on something as an alternative to the Zometa?
I saw my onc. today; the bone scan report showed no changes as far as the cancer, but he's concerned about some spots on my jaw being either peridontal disease or from the Zometa. I've been on Zometa since April, and no dental work done for at least 10 years, just routine cleanings. I haven't had pain or anything in my teeth or gums either. I saw an oral surgeon in July for xrays, and at that time he said everything was fine.
I have to go back to that same oral surgeon on Monday for a check up. I didn't get my Zometa today; my doctor wants to wait til after he gets the report from the surgeon before proceeding.
I did get my Faslodex injection; and I started getting the same headache I always do after treatment; I have Fioricet I take for the headache. But at least I know now my post treatment headache is due to the Faslodex and not the Zometa; this is the first time I haven't had both on on the same day.
Feeval, how are you feeling now? Did that numbness go away?
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Riverinerabbit and ladies,
Well, I don't have bone mets, yet I am ER+ and now 6 some years out, and I worry about them of late.
This is a great supportive thread for you all. It provides much information and inspiration!
I just wanted to post this one item if you don't mind:
Some trials may be considering "re-stimulating" ones ER+ status by using estrogens. I know one lady her posted that she had indeed received estradiol. Well the thinking is, that if you are ER+, yet hormones (actually, anti-hormones) do not seem to be working, the active receptor status may be re-stimulated by exposure to estrogen. I don't know if that the is study at MSK referred to here or not, yet I see this mentioned more and more in the medical literature as a means to help the ER+ non-responsive patient.
One other item: If possible, always try to get a biopsy of your metastatic lesion. HER - (negative) primary disease appears less concordant in a metastatic state. In other words, a metastasis may be
HER+ ( I think it was 23% of the time in the study on this I read), offering a couple of very affective biologic antibody therapies for the metastasis.
I wish you all well, and thank you for demonstrating it's possible to have such grace under pressure.
Tender -
I had my appointment with the oral surgeon yesterday; he took another set of x-rays. He said everything looked fine, he could not see any evidence of dental disease or necrosis. He did tell me what to look out for though as far as signs of necrosis. He said if I start having any pain in my teeth or jaw to call them right away.
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Hi mom2cat
Great ! no worries then. Your oral surgeon sounds as if he's on top of it. My dentist has no knowledge of Zometa. -
Hi Mom2acat,
Sorry I missed your post! It sounds like Good News from the Oral Surgeon and you'll be able to stay on Zometa longer!!! My onc has NO alternative for Zometa now that I am in the ONJ Club. He stated that any other "Bisphosphate" drugs would probably bring it back, too. I dont want to think about future problems, yet, since I cant take Zometa. He also said that it stays in your system for at least a year after stopping the drug. Unfortunately,no MD will diagnose ONJ until you physically have the "exposed Jawbone" even with pain in your tooth and jaw and even after a sore appears. We can all get mouth sores as a side effect from all the different meds we take. My onc treated me with a viral med after jaw pain and the sore appeared. It wasn't until the jawbone poked through the skin that everyone agreed that it was ONJ. The whole process of ONJ diagnosis took about 4-6 months after intermittent pain started. I know this may not be comforting news. We all live day to day with different signs and symptoms and not knowing what they all mean. It's a wonder we are not all in the "loony bin". I am using the Peridex RX and Biotene mouthwash(over the counter) and I seem to be fine so far. Maybe try the Biotene mouthwash if any pain starts as it definitely helped and I only heard about it after the exposure of the jaw happened. I found it at Walgreens or CVS. Best of Luck to you and you can private message me anytime. Pat
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Hi Pat and Riverinrabbit,
The oral surgeon was going to send a report to my oncologist. Since I get the Faslodex for the breast cancer, I think he was giving me the Zometa more because of the osteoporisis risk than for the cancer itself; I have osteopenia in my left hip and a small area of my spine. Even before I had the bone mets, my onc. tried me on an oral biophospate, Actinel (not sure of the spelling), but I didn't feel good for two days after taking that, I felt like I had a tight feeling around my throat for a couple of days; not like I couldn't breath, but it was very uncomfortable, a sensation like I had a very tight turtleneck on. I have acid reflux too, and I had bad heartburn despite following the instructions to stay sitting or standing at least a half hour after taking it. So I do not want to take the biophosphates orally again.
I go to my oncologist's office to have the blood drawn through my port on the 27th, so I'm hoping to find out then whether I will have my Zometa or not as sheduled on December 4th.
I am lucky too, that my regular dentist referred to me to the oral surgeon that I saw; I was referred to him because I was told he was the best in the state, and he has also worked with a lot of cancer patients.
Shari
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