Bone Mets Thread
Comments
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Babs, how long have you been on Zometa?
Leah
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zometa gals
been getting zometa monthly (every 4 weeks) since october. all kinds of icky side effectts; exactly 24 hours from infusion flu symptoms. talked to my doctor; in april (my last one) she gave me a HUGE bag of fluids 24 hours after zometa. it was so helpful' went to infusion room feeling sick and after i had half the bag of fluids in i started to feel better. really cut down on the side effects. will be doing day after fluids every infusion from on. hope this helps*
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It is automatic that I get fluids with every Zometa treatment. I have been getting Zometa for 18months with very minor se's. 1st treatment without fluids ended up in hospital with high fever.
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Leah, I just had my third tx. I had terrible SE after the first one, but after the second one I asked for a big bag of saline and that was much better. After the third one, I had a slight temp but that was it. You need to drink a huge amount, and if you can't then ask for saline.
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Hi. I am on Zometa every 6 weeks. Was wondering if anyone experiences stiff and sore joints, especially hands and feet? Don't know if biophosphonates are contributing or is it the pre- mature menopause (due to AC chemo last year)? Hugs, Renae
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I will get zometa every 3 weeks, and very nauseous and was in bed all weekend....have a dr. appt in 2 weeks. The first time, chemo threw me into menopause.
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Stiffness and sore joints usually hits me around 4th day. That is one of the she's.
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Hi ladies,
I do zometa. The first dose was hard. From that point on nothing. I have been doing it for 3 years now. Hope it is making a difference.
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I did zometa when I was on chemo. The first dose hit me very hard, was sick for a week. After that they slowed down the infusion x3 and I found it much easier to tolerate. Since the chemo finished I've been changed onto xgeva with no se's so far
Nicky0 -
Hi Guys, have any of you used Xgeva rather than Zometa. I am currently getting the dental work out of the way. My onc has given me a choice and I am trying to choose the best one for me. Some rasearch says that Xgeva is better than Zometa but has a higher chance or ONJ than Zometa. I am leaning towarsd Xgeva because it is an injection rather than an infusion. I'd like to get some of your opinions. espeacially from those of you who are taking Xgeva and what your SE's are.
Thanks
Chutzpah
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My onc fought the ins. co. to get me Xegeva. Once a month a shot, can hardly feel it. Can't answer about side effects as I am always on a chemo and adjuvant drug too, each of which has side effects. However I can't say I feel any worse right after my monthly shot. Good luck.
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Hi all - well - the onc took me off Xgeva after 4 shots because the last shot I had resulted in the entire lower half of my face KILLING me for a week. Since that time, it's been much better - but getting the odd jaw pain here and there, and cracking in the joint. The week when it was the worst, I literally felt like my teeth were rattling in my head every time I took a step.
He said, let's hold off for now. Get you off it for a while. I was relieved yet scared at the same time.
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I've been on both. Onc originally tried to get approval for xgeva but insur. wouldn't approve, so I was on zometa for approx. 18 mo. Then, insur. decided to approve the xgeva, so I've been on that since. Can't say much diff. except for injection easier and taking calcium to avoid hypocalcemia (xgeva) is annoying, but should be taking calcium anyway for bone strength. I did see an article comparing both and xgeva has better results with preventing skeletal events (fractures).
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Chutzpah- I've been getting Xgeva shots since October 2011 with little to no side effects. Maybe a little achy in my joints but I guess that could be age-related. The shots have been easy and so far haven't had any dental issues. Hope this helps.
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I've been getting XGEVA once a month since July. The first few times I got very tired and slept a lot but other than that no SEs at all. Hope I can continue because its so easy.
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Darn side efffects...I think they are unique to each of us. My first infusion of Zometa (about 2 years ago) caused me to suffer some intense, flu like symptoms. I was miserable for the next day and gradually began to improve over the next three days. Now, I get a saline drip and an IV steroid called Decadron. Thankfully, the Zometa side effects are practically, non-exsistant. I get the Faslodex/Zometa treatment once a month and it's been keeping me stable. Woo-hoo!
However, I am more and more frustrated that the health insurance companies are allowed to deny and dictate our treatments. People's lives are on the line!
Despite all that, I pray for everyone to experience few side effects and many years of stability!!
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Aaerial, I get decadron and that friggin steroids keeps me up all night unless I take benedryl which I did last night.
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Decadron gives me roid rage! Not to mention eating like a lumberjack. Ativan took away the rage part. Hope I never need steroids again.
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My mom just started treatment for bone mets. It is virtually EVERYWHERE and she is in horrible pain (mostly back) even on the heavy painkillers oxycodine. Her insurance would not yet approve a higher dose until she tried morphine.
Has anyone here been able to have it become manageable as a "chronic condition" when it is so widespread or is it too far spread? It is in all her bones but not other organs.
She had the first biophosphonates treatment Friday and started taking Letrozole. When should she notice a diminish in pain? After a few months? Is Letrozole as effective as chemo or the radiopharaceuticals?
I don't know the bone density. Will the treatment help rebuild bones already damaged or just strengthen what is left? She had 4 fractured vertebrae. 3 were cemented in surgery (that is how bc was discovered). The 4th had started healing itself I think.0 -
Kitty, take a deep breath and let it out slowly. The treatment your mom is recieving is a good one and hopefully she will be showing signs of improvement in the next few months. I sat that because Letrozole, although being a very powerful medication is a slow acting one. Her bisphospinate treatment will help to rebuild damaged bone as well as help to slow the damage done to other bone by active cancer. If her pain is not under control it may be worth asking her doctor about having some radiation treatment to the worst affected areas......it will help kill cancer cells and so alleviate the pain.
Hope she responds well to her treatment.
Love n hugs. Chrissy
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Have been on Zometa for last 17 months but oncologist told me last visit she wanted to switch me to Xgeva. Not sure if I get my first injection on my return oncology visit or not.
Zometa first two doses were tough; knees would hurt so bad that I couldn't walk when I first stood but then it got better. I also started taking Claritin 2 days prior to receiving Zomet and two days afterwards and never had any symptoms after that
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Kitty, yes, the letrozole and bisphosphonates are as good as chemo and probably even better. I have been on them since july. I didn't have pain but my scans show the mets filling in with new bone from the treatment so hopefully she will be feeling better.
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Hi NYCchutzpah,
I'm new here and just saw your post. I did 3 months of Zometa which gave me severe neuropathy so I stopped and took a break. And then I tried Xgeva for a few months but it gave me super duper severe neuropathy that kept getting worse....I felt like I was constantly being stabbed in my arms, shoulders, and legs. Neuropathy is a very rare SE for these bone drugs so I doubt that it will happen to you. As soon as I went off the bone drugs the neuropathy went away so unfortunately I had to stop taking them. I did tolerate the Zometa better but my oncologist thinks that Xgeva has better results for most patients. I wasn't on either one of them long enough to have jaw problems, but though my support group at the cancer support community I have noticed that the women using Xgeve do seem to have more jaw problems. But you never know with SE, you may have no side effects at all...Good luck to you with whichever one you decide to try!
xoxoxoxoxoxo
Lilymadeline
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Hi Lily! How long have you had bone mets?
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I've been having a lot of pain lately where they took out my lymph nodes and above my drainage scars. Is this a normal part of the healing process, or should I be worried? Any input will be greatly appreciated. Thanks, Cynthia
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Macyhen,
The lymph node dissection areas are and will be the most painful. Mine hurt for three weeks after the surgery, and - frankly - my drainage scars are still tender 7 years later. So, yes, it is a normal part of the process. Are you doing the exercises? The best one for me was the fingers crawling up the wall one, to make the arm go through a full range of motion.
Gentle massage will keep the area less engorged and help all healing tissue to stay supple. I wish I had been better about it.
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That exercise really helped me as well to get my arm working normally. I also would put my hand on the back of my head and gently push the elbow back. I tried to always be doing something to help the arm when I was watching tv, anything that would stretch it to the point of hurting just a little. It really helped and I have no problems at all now. I agree the LN dissection was the most bothersome for a longer amount of time. I had a seroma right underneath it that seems to take forever to go down but finally did.
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Hi, Macyhen -
Yes, as the other ladies have said, it is totally normal, and can be very painful. I'm not trying to scare you, but for me, it took months to feel normal again, and have a normal range of motion. Just reaching into the fridge, or reaching for my car door, was SO painful. Little movements, that you take for granted are suddenly a big deal. And no one warned me about this before the surgery, so I was really not expecting it at all, which somehow made it worse to have this unpleasant surprise along with everything else that was happening.
BUT - it does get better!!! It will get better for you too, but be patient, and try not to be discouraged if this takes a long while. The exercises really do help, and I agree, the one that really helped was doing the one with the fingers crawling up the wall.
Wishing you all the best,
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Thanks ladies for your input and advise, I was a little worried, I hate to think of every little ache and pain as the bc progressing. My mo is out of town so I couldn't ask her as this has just started to bother me. I really appreciate all y'all!!!
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Does anyone else think that bone mets show up in places where you have had previous bone issues? I told my onc this but she said that its not true.
My bone mets showed up first in two vertebrae that have always been problematic (an injury from 15 years earlier), plus my hip that has had bursitis for many years, and my shoulder that was damaged from carrying a heavy school bag on one shoulder for years. Later the mets spread to other places, but it just seems like it can't be coincidence that they started off in the already weakened bones.
What do you think? Anyone else have a similar experience? Not that it really makes a difference, I'm just wondering...0
