Bone Mets Thread
Comments
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Mary- I asked my plastic surgeon about MRIs because he said they would monitor my implants that way to make sure there is no rupture, and he said an MRI was fine even though I have a hip replacement because it was titanium.
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Mary I've had the same answer......I have a rod in my humerus. All good with MRI's etc.
Love n hugs. Chrissy0 -
Thanks. That's good news about the MRI, because I'd rather have that than the other tests.
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Well, I've just arrived home after the pet scan. No one gave anything away other than to say they got clear images. Hopefully my onc will have the results when I see him on Tuesday. You can all uncross your fingers now - thanks!
Nicky0 -
Hi Teena,
For what it is worth - I have been on Femara and Xgeva essentially since the diagnosis and I am pretty lucky. The side effects from the Femara have been minimal. I did get a lot of pain that I thought was Femara side effects at the beginning but now they think it was something called tumor flare (which you guys here had suggested as well). It is amazing how much knowlege is in this group! Hoping your Femara experience will be like mine, all uphill!
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Nicky,
I'm keeping mine crossed until you get the word! Still there for you.
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Keeping mine crossed too till we hear Tuesday.
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Yup, mine are still crossed until we hear what news on Tuesday! Hanging in there with you Nicky!
Love n hugs. Chrissy0 -
Nicky I also will get the results from my most recent pet scan on Tues. I prefer to get the results from my oncologists cause she explains everything to me and answers all my questions, clarifying when I don't inderstand the first time she explains to me. Just got home frommy first radaition treatment for pain. I was told that it wil take few treatments before I feel a difference. Hope it works cause I am having difficulty with walking. I now walk even slower than the tourists in the city. I am looking forward to just plain walking without pain.
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That's a good quesiton, Mary, that I think only a radiologist can answer for certain. I do know that I have a stainless steel Harrington rod in my spine, and that hasn't prevented me from being able to have MRI's, although the radiologist turned down the MRI machine a notch (not a terribly technical explanation, but whatever) the last time I had a MRI because of my rod. Good luck!
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Hi All!
I'm off to see the MO today for a follow up. I took a peek online at my blood work (told myself I wasn't going to do it until today) and my CA 15-3 tumour marker result is in the normal range again (17/23). What a huge relief!
I know that this test shouldn't be used for screening but in my case when it started to rise in the fall it alerted my MO that something was going on and further testing was needed.
Sure enough scans showed met in my right femur.
The CA 15-3 was out of range just before my rads in July so I hope that the radiation killed off the BC buggers!
Can you think of anything I need to ask my MO as far as follow up? Should I ask for another bone scan to confirm that the radiation did what it was supposed to do? I wonder what is the standard follow up following rads?
FYI - I'm still having achey bone pain (legs, ribs, back) - have had since starting Tamoxifen in 2010 - so I can't really say that I felt any different before or after rads. My right hip and leg (met on upper femur) didn't hurt - only my right knee would hurt with over exertion. After rads my right knee is much better.
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Just back from the MO. He is switching me from Tamoxifen to Arimidex. It kind of threw me off - I wasn't expecting a drug change.
So when he told me I should switch and asked me if I wanted to switch to Arimidex, Femera or Aromasin I didn't know what to say. He suggested I try Arimidex for a month and see how I do on it.
I'll be going off the Tamoxifen for a week before I start taking the new drug to "clear" my system. He says that Tamoxifen stays in your body for up to a week and it's better to start "fresh" with the new drug so that I can accurately assess the side effects (if any).
He is going to send me for a baseline bone density scan and see me again in 5 weeks.
You ladies are a fountain of knowledge so I'll ask now - Other than upping my calcium intake is there anything else I should know?
Thanks!
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I dont know what to say ladies. I am truly touched by the fact that you're all in my corner, and that you'll all be watching out for my post on Tuesday. It means so much to have such support. Thank you all.
Nicky0 -
Nycchutzpah, glad to hear you have started rads for pain. To give you hope, in march I was using a wheelchair because my pain was so bad and I couldn't get out of bed, in the car, etc.
I then had ten rads to my l and t spine, my left hip and femur.
now six months later I am walking everywhere, and using a cane when I leave the house. BUT, it took a while. Firstly, the pain got worse after rads before it got better. Secondly, it took a few months for the full benefit of the rads to kick in.
So if it doesn't seem to help straight away, just hang in there. It will get better!0 -
Marie, all the AI's mess with our bone density and just upping your calcium while good wont complete the job. Your body needs Vit D3 and magnesium as well as the calcium.......they all work together in helping to keep your bones strong. For the added aches and pains fish oil and a natural anti inflammatory such as Boswellia and Curcumin are great.
Hope you do well on Arimidex!
Love n hugs. Chrissy0 -
Marie, if you were on Zometa while on Tamoxifen, it's most likely your doctor will continue this while on an AI. This should help reduce bone loss. I was on Zometa for years. My bone density scan was above average two years ago. Exercise, calcium and vitamin D I'm sure helped as well. Vitamin K from green veggies is another.
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Thanks for the advice Chrissy and Heidi.
I had to quit zometa. I only had 3 infusions because of jaw pain.
I will stock up on vits and green veggies until something else is suggested.0 -
Hi!
I'm new to this discussion board, but I've read through some of your posts and I feel so blessed to have found your group. I was first diagnosed with cancer in 1972, which led to breast cancer, and now bone mets. Are there any fellow Xgeva patients? I'm wondering if the lower jaw bone problem happens with Xgeva?Big hugs all around!
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Welcome Sandymuller - looking at all your treatments, you are my hero to be fighting this horrid stuff as long as you have. Yes, I'm on Xgeva for 9 months now and just started to notice sharp jabbing pains in my jaw joints. I was told to just watch it and let them know if it changes.
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I have one more dose of radiation on monday then I'm done! I'm hoping that means the stomach cramps and diarrhea go away soon.
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Hi all,
Haven't been on for a bit - lots happening while I was otherwise occupied! Nicky - holding you in the light for Tuesday's results. I had my bone scan a week ago Monday and am waiting for my CT scan and appointment with my new MO. Caryn - I was really glad it wasn't a conference call!
Had to have a tooth out 3 weeks ago and it was healing well, then rather turned to custard. I have a bone sticking out of my gums next to my tongue (left rear bottom tooth) and it hurts! I'm on 2 kinds of antibiotics. The jello, yogurt, and iced coffee diet has resulted in weight loss, but I wouldn't recommend it! I can only drink through a straw without it being amazingly painful. The good news is that my hip/leg/spine pain are much less! They've suspended my infusions until my jaw issue clears up. Yesterday, I also got some amazing mouthwash from the pharmacy that must be loaded with novocane. Makes everything numb, which is wonderful - managed my first "real" food (fish) in almost 3 weeks! I see the oral surgeon on Tuesday, but when I saw him last Tuesday, he just gave me more antibiotics and said there's nothing anyone can really do about it other than wait and see. I'm hoping it heals soon.
Sending good thoughts to all of you for successful treatments, scans, appointments, etc., and NO progression!
Terre
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I am supposed to start with xgeva on Tues. Before my onc would let me use Zometa,xloda, or xgeva I had to see a dentist to make sure that I would not need any invasive dental work. It is when one needs invasive dental work that problems can arise from using a bisphonate. Wound up going to an oral surgeon and had an impacted wisdom tooth removed (oral surgery is covered by my insurance I don't have dental insurance) A plain cleaning is ok.Wishing you guys sucessful treatments and at least no progression or maybe even having a nice long relationshiip with that fellow NED
Charlotte
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Hi Sandymuller and welcome to the bone metster thread! Wow! You sure have been in a long fight with the beast! Hopefully your latest treatment will keep it on the run for just as long.
Beth.....yay!!! Sure hope the rads have proven effective in controlling your pain.......don't forget that they keep working for some time after you finish so with a little luck they will totally get rid of the pain.
Love n hugs all! Chrissy0 -
KiwiCatMom, I really understand your pain. I had complications from Faslodex and Xeloda. My jaw pain was so bad and I started to have receding gums in one area, and a huge ulceration on the top of my mouth, in the place that I had had gum surgery over 25 years ago. The mouthwash has Lidocaine usually in it mixed with some type of anti-acid like Zantac, here in the states the call it magic mouthwash. Because of other medications and Chemo, it took my mouth six weeks to heal. I hope yours heals in less time.
My good news is that even though they stopped all treatment six weeks ago when I threw another Plumonary Embolism, my cancer markers dropped over 200 points. Plus bone mets in my hip and femur are gone with having had just Cytoxan and Faslodex. I'm not able to have radiation because of Ehlers-Danlos Syndrome and Lupus. However, it just goes to show that bone mets can be reversed with chemo and other medications.
Waiting to hear on how they will treat my spine and ribs, we talked about gamma knife surgery but I wasn't well enough they felt to have such. However, every time I have vomitting I almost pass out from the pain in my spine. Finally had to switch pain meds from morphine to oxy, however pains meds seem to just make me sick and not help the pain.
Doctors are saying that the embolisms are normal with some patients that have Stage IV cancer. Have any of you heard such? This is my third time and I'm on Lovenox injections?!
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Thanks M360! It's actually feeling a little better today - had some soup! Thanks for all the advice.
Great news about your blood work good and no mets! Just fantastic!!! Here's to more good news from you going forward!
Kind regards,
Terre0 -
I've been reading this forum since spring and finally decided to join. My wife was diagnosed with breast cancer in December, 1999. She had a double mastectomy with reconstruction. At that time, they did a sentinal node biopsy which was negative. She took Tamoxifen for five years between 2000 and 2005. She took Femera for another five years between 2005 and 2010. While in the gym this April she started complaining about pain in her leg and thought it was a groin pull. After several mis-diagnosis she finally had a CT Scan of her pelvis which revealed a bone tumor and the subsequent biopsy confirmed BC bone metastasis. The following PET scan showed the tumor in her pelvis, a small small spot on her hip and a tiny place in her T3 vertebrae. I was surpised when the radiology report didn't also show something on her ribs because she had been complaining of a very sensitive spot there for several months. She had ten treatments of radiation to her hip and pelvis which pretty much relived the pain in her groin by the last treatment in early July. She was doing really good when she went back to her oncologist except for the continued pain in her ribs. When they reviewed the original PET scan again, they realized there really were mets there too, so she underwent another ten treatments to her ribs and they decided to treat the vertebrae at the same time. She just finished this round and is doing OK except for a bad case of what looks like sun poisoning. Now she is on Arimidex and taking Exgeva injections every three months. Her next PET Scan is in early December. She turned 60 last month and we had our 40th wedding anniversary last year. Hoping for many more of each but can't help but be concerned every time she has an ache or pain.
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Hi Sunrise and welcome. So sorry that your wife has joined the stage IV circle but glad you have been able to get some information and comfort from these threads.
Here's hoping the Arimadex and Exgeva get her to NED and she manages to stay there for a long time. Happy Anniversary to you both........40 years together is wonderful! Hoping for many more.
Love n hugs. Chrissy0 -
The wait is over; the results are in........STILL NED 😁😁😁
All those poor stiff, sore fingers can be uncrossed now - but it was much appreciated!
Nicky0 -
Great news! Hope you can now relax and celebrate.
Caryn0 -
Nicky, that is fabulous!! Love to hear good news, thanks for letting us know.
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