Bone Mets Thread
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Laura,
I also did not have any bone pain when diagnosed with bone mets from the get go. In the beginning of treatment, I had a lot of back pain. I'm 4 years out now and on Zometa & Femara. I don't have much pain now and hope it continues to keep my bones strong.
I know of a few others that have the pain in the beginning of treatment, but once on zometa or xgeva for a short time, their pain subsides. I hope yours does as well.
Terri
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Bone could get really painful take it from me. I have good days and I have really bad days. The pain in my lower back and leg is like pullin teeth. I am a strong person but bone pain gets really bad.
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Hi All!
Thanks for sharing your stories!
I hope you don't mind me joining your group today. I just found out that I have mets on my right femur at the hip.
I didn't have any pain - although for years I have called my right leg my bad leg as it gives me trouble from time to time.
The mets were found when I had a rise in my tumour markers. The ONC ordered tests and a bone scan showed something. The tumour markers went down to below normal but I went ahead with a PET scan that had been scheduled and lo and behold it confirmed something was there.
A second PET scan repeated 3 months later showed "suspicious lesions" again and so a bone biopsy was ordered and confirmed mets.
I'll be having rads, continuing with Tamoxifen and then more follow up to see what to do next.
ONC tells me that I could have had these since my original diagnosis 2009.
Marie
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welcome!!!
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Welcome, Marie. I was diagnosed in January with bone mets to the right hip, femur, and SI joint. I had had mild pain off and on for about a year, but didn't think it was cancer because the pain wasn't very bad. The pain seemed to suddenly get a lot worse in December, and finally my PCP sent me to an orthopedist, who found the cancer with just an X-ray. I had to have extensive surgery followed by radiation and Faslodex. Anyway, I guess my point is that my mets weren't diagnosed until there was serious bone damage because I thought bone mets would cause more pain.
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Hi Marie and welcome! I had an enormous amount of pain prior to being dxd but rads helped initially. I have pain meds as well as using a lot of natural meds and sups so I have it all nicely undercontrol. There are certain things I can no longer do as they cause a pain flare so I avoid them like the plague......lol.....its a good way of getting DH to do the painting for me......lol.
Love n hugs. Chrissy
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Marie,
I'm so glad you found this site. The women here are so kind and knowledgeable, they have seen it all and can help you with any questions you might have. Welcome, your Sister in the Same Time Frame.
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Hi Marie
Just to say hi, I am also relatively new to all this. There is much help and advice here. Your in the right place.
Take care
Mara0 -
Thanks! MO is referring me to the same RO that I had when I got radiation in 2010 for original dx. Rather than wait for dr to dr referral I called the RO's office myself this morning (had contact # from before) and left a message basically saying "let's get this show started".
Surprisingly his office called me back an hour later and said they had a cancellation for tomorrow afternoon and could I come in. She said we know it's not urgent but if you can take this spot it will save some time.
So I'm going in for a consultation with my RO 2 days after I get the news that I have BC in my femur.
Pretty good service I'd say!
I'm not sure what to expect this time around - I had 28 rounds of rads before - or even what to ask the RO about this bone mets situation.
Can anyone tell me how many rounds of rads they had with their initial bone mets dx and also any advice on what to ask the RO?
My poor sister is coming to visit me next week from another province and I'm hoping to get this all organized so we can enjoy her stay. It's a weird coincidence but the last time she visited me (4 years ago in July) I was dx with breast cancer and now this happens just in time for her next visit. My husband says that she shouldn't come visit us anymore!
Enjoy the rest of your week and weekend
Marie
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Hi Marie,
I had a 2cm met to my upper femur. I had rads x15 to the area. That was about 18 months ago. The area appears necrotic on PET scans since that time. I had no pain prior to the rads, so the idea was to kill the little bugger. I had concerns about skin problems, but experienced none and used aloe vera geI and aquaphor religiously. Did have some minor diarrhea and was a bit fatigued toward the end, but it really was a piece of cake. I did, however, emit little screams when they did the tattoos! I am a big baby when it comes to needles.
Caryn0 -
Hi Marie
I had 10 rads (daily) to my hip, femur, and spine right after my mets were found. The rads were supposed to reduce the pain and let me walk normally again, but they didn't really.0 -
I had ten treatments to my L1-3 vertabrae. Very easy and just a few side effects. Upset stomach and minor fatigue. I would do radiation over and over before chemo. It is so much easier. Good luck!
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Hi Marie, I had mets to the hip, really extensive, so they had to do a hip replacement. After the orthopedist got in there, he found more mets to the upper femur. After surgery, I had 10 rads to hip and femur. While all that was going on, I had a PET scan, and they found mets to the ilium near the SI joint. So then I had 15 rads to that area. The radiation wasn't bad. I don't think I had any SE's.
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Hi Caryn, did they say that there is any treatment for the necrotic area?
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Hi Mary,
No , no tx , since necrotic means dead.
Caryn0 -
I had a 2 cm femur lesion and had 14 rads. Developed a pathological fracture and had a partial hip replacement. Have nothing in the hip area anymore on my most recent pet (2 months after surgery and surgery was 1 week after radiation ended). Didn't experience any side effects. Was told it is an easy spot to radiate if you have to have bone mets.
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Are any of you NOT taking bisphosphonates or similar bone-strengthening drugs? I know I'm like a broken record about this, but I really don't want to take them, and I'm being pressured by my MO. I'd like to know the experiences of other women. Did your doctors say they would actually help stop the progression of bone mets or just help prevent fractures?
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Mary, I was like you and didn't want to take bone meds before I had bone mets. It's pretty obvious to me now that had I taken them earlier, I wouldn't have suffered the broken vertebrae in my back and almost lost my ability to walk, due to the cancer making a home in my weakened back bones.
There is evidence that drugs like Xgeva actually create an environment hostile to cancer in the bone. There are some trials going on now (UCLA, for one) that are attempting to give more data on this subject.
If you were to take something like Xgeva for a short while- maybe a year- you would get a lot of protection and have very low odds of any side effects. By taking hormonals like Arimidex and Faslodex, you are risking weakening your bones, and perhaps making a very easy place for cancer cells to grow.
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Mary I don't take a bisphosphinate. When I was first dxd with bone mets my doc put me on bonafos which is a tablet form along with a acid reducing pill (can't remember the name, sorry). Within a couple of weeks I was having massive stomach pain and other gastro problems so I quit taking them. Since then I take magnesium, Vit D, Calcium and zinc and after four years on an AI my Dexas show osteopenia which I had prior with one vertibrae at osteoporosis.
Many years ago I was in a car accident and crushed two vertibrae and these show up on all scans......they have not changed nor have they given me any problems the vertibrae that is osteoporotic is further down my spine near the base. I'm thinking that my suppliments are doing their job and keeping my bones strong enough without the bisphosphinate.
Love n hugs. Chrissy
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I will have my last two bisphosphonate (Aredia) infusions in the next six months. My mo has become increasingly concerned about fracture risks and said she had been seeing more of this in patients who have taken it or years. She said that at present the evidence that these drugs create a hostile environment for cancer growth is not very strong and there are conflicting studies. Unclear, just as so much about treating this disease is.
Caryn0 -
I was taking Zometa every 3 months for around 4 years. Then I was switched to Xgeva every month. I have been more concerned because of the length of time I have been on these meds and reading about femur fractures, etc. I was having aching gum areas and went off of Xgeve around 4 months ago. My dentist felt my mouth problems were due to grinding my teeth and sure enough a mouth guard got rid of the mouth problems. I just got back from a second opinion at M.D. Anderson. Their oncologist said Xgeva has not been out long enough to know the long term effects, but she did say she would recommend Xgeva every three months instead of the one month my oncologist recommends.
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Thanks for all your input. It's such a hard decision to make-- one of those damned if you do and damned if you don't things.
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MaryLW......I am wondering if could request a bone density test to see if your bones are strong? And perhaps be monitored with these tests if you choose not to take the bone drugs? A possible compromise with your onc? I will say I am on pamidronate and have had almost zero side effects. My onc, like Caryn's, will stop infusions at the end of this year if I am still progression free. So if you do choose to go on it, it may not be forever. Good luck with your decision.
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Mary I was dx august 2012 with met to T4. Tx was 25 rads to spine , monthly zometa and letrozole. I asked my Onc " how important is the zometa". She said "very important". My bone density is good as I walk and cycle. I am going to stay on zometa at least a year then revisit. I had no pain in the spot where the cancer was but large lesion. Found b/c tumor markers doubled. Had PET and there it was. The rads took it out.
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Chrissy, which AI do you take?
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Mary I take Femara now and have done for two and a half years. Prior to that I was on Arimadex.
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I went from Arimidex to Faslodex. I never took Femara, but I know a lot of the women who post here have taken it. I wonder why oncologists choose one over another.
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Hi there,
I'm worried about my pain control. My onc has given me statex, which is morphene. I've been told by different people to take it at the very first sign of pain. Sometimes my back gets really sore, and it doesn't seem to help all that much. But, when the pain isn't that bad, it does work. I've also been told to take it when needed. I am so confused. I am afraid of getting addicted to pain killers. Any advice would be appreciated.
Thanks.
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Laura, the thing with pain meds and stage IV is you use them when you need them but don't let your pain get out of control. Addiction is not the enemy here just your pain.
I was told that if your pain is being eased or controlled it means that the meds is doing its job.......if you get a high from your meds, you do not need it.
Use your meds and put that fear aside.
Love n hugs. Chrissy
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Mary I think docs just have their own preference and it really doesn't matter which one you take as long as it works for you without causing too many problems along the way.
Love n hugs. Chrissy
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