Bone Mets Thread
Comments
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Got Zometa yesterday, boy the bones hurt while I was getting it, ok now!!!
Sandy
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Caryn I am increasingly concerned about the xgeva and onj. I know this drug is helping me but what I read about onj is definitely not pretty. I think I read something about the bisphosphonates staying in the system for years. I need to learn more about it but I am already leaning toward stopping at a certain point. I've only been on it 8 months. I worry about eating hard crunchy things. I read that the jaw remodels at 10x the rate of other bones due to the force of chewing, and that's what causes the onj risk. Interesting.
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HLB,
ONJ, though very unpleasant sounding, is still rare. My mo said the greater worry was bone fracture, specifically femur. While the bisphosphonates strengthen bones, they also make them more brittle. I'll try to find an article about this and link it.
Caryn0 -
http://well.blogs.nytimes.com/2012/05/09/new-cautions-about-long-term-use-of-bone-drugs/
The risk of fracture still remains small but my mo feels that if we monitor bone density then we can deal with things as they arise. BTW, she is unconvinced of any anti-cancer benefit the drug might have.
Caryn0 -
Yeah I don't think its proven but some people think it helps by making the skeleton uninviting to mets somehow. I don't know all the complexities of how mets work but what if that meant the mets were more encouraged to go to another organ? That would certainly not be a benefit!! I hope it does turn out to be beneficial though because I'm not convinced of the bone benefit.. Unless you have severe osteo. My mom took fosamax for years and ended up with esophagus problems. She been off of it for years now and her bones have graduaally improved with calcium and weight bearing exercise. When she was on it they did not improve at all but they told her it was still good because it didn't get any worse. She had her espophagus dilated but still has problems.
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HLB,
My onc's office is involved with a UCLA study that is evaluating the possible cancer fighting properties of Xgeva. He put me on it as soon as we discovered my mets, (and I had crushed vertebra) but he has taken me off of it after two years because he feel that the stats on ONJ and femur problems increase at that time. Two years did help my bones gain strength and structure, and I've been stable with the Faslodex/Xgeva combo.
I was a little concerned about quitting it, but my onc says it does stay in one's system for a long time. We're going to look at going on a once every six months schedule next year.
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For those that have lots of mets to the spine: I also have lots of degenerative disease along with the extensive spinal mets. I have had a procedure called "radiowave nerve ablation". It last me from 6-9 months. I also have degenerative disc disease along with the extensive spinal mets. You can read about the procedure and it is used to help treat the pain of spinal mets but it isn't for everyone. I am not sure what I would do without it and my oncologist had no problem if it gave me pain relief.
Just wanted to mention this and perhaps it can help someone else.
Caryn, is she just going to monitor you? Were you on Zometa or another drug prior? I have only been on this journey for 20 months but I haven't seen any benefit from the Zometa as far as my bones or slowing the bone mets.
Jana, hope your doing well from your surgery.
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Aredia is the only bisphosphonate I have ever been on. I am on Arimidex too, which I will, of course, continue. As far as bone loss goes, I will be monitored via bone density scans.
Caryn0 -
Thanks for that info Sandilee. Guess I won't worry about it for awhile since its only been 10 months. Wull be interesting to see the results of the study. My mets are healing and tm down to normal so something is working between the xgeva and letrozole. And all the alternatives but I won't know if that works until I go 10 years without having to change treatments!
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Bump for Cristina.
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Chrissy what does bump mean?
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A bump brings a thread to the beginning of the active topic list. This makes it more likely to be read and responded to.
Caryn
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Has anyone been given Metron Dosepak for difficulty walking from bone mets? If it is going to work - how long does it take? I am on day 2 out of 6 but as the dose decreases each day - it seems as though if it were going to work I would already know. Maybe the problem is that I was taking advil and although I didn't know if it was doing anything - it must have been because it is a lot worse now (they said not to mix the dosepak with Advil since both affect your stomach). It really feels more like weak muscles but they seem adverse to trying physical therapy. I am thinking about acupuncture but do not know how you find a reliable provider. Had an MRI of spine (T and L parts) and thankfully there is no compression of spinal cord.
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How does one do a "bump"?
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Just making a comment will bring the thread up to where more people will see it. Hopefully someone will be along soon that knows about dosepaks. :-)
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2013 I was reading the other post about how much pain you're having. I think chrissy mentioned Boswellia and Turmeric. Have you tried those yet? I think they are supposed to very effective for joint pain and Chrissy seems to really have control of side effects down to a science.
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Thank you so much.I did read it couple weeks ago'
It is very clear and understandable. I just still new at this I am doing
everything I am told by my oncologist. Plus I have given up sugar 99% and bread and
other food that are not good for cancer patients.
Not sure what works and what doesn't work.
I would like to know how long I have. Are the statistics approx 2 to 3 years correct?
What kind a quality life I will have?
I was told a needed a miracle.... and that I was not going to get one.
I am so sorry I am not good about writing even so I have been here in the US
for many years I have trable expressing myself and still make many mistakes
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Hi Cristina, glad you found the thread. All the statistics say two years but there are many here who have defied those odds and I'm one of them.......I'm just passed four years and still going strong. If you respond well to your treatment, it can keep working for you for a long time. There was a lady who passed last year but she was 19years with mets......so have hope.
Do you know what your cancer type was? Stage, grade, ER/PR+ or - Her2 +or - what these things are will help determine your treatment so they are important to know. If you don't know, ask your doc as they will help you understand a lot more of what and why you do a particular treatment.
Don't worry about making mistakes when you write, I'm pretty sure we are having no problem understanding you.
There is pain and discomfort with cancer and it doesn't matter which one but there are so many painkillers available to us now that QOL can be very good with some limitations. Natural medicines used in conjunction with normal medicine can help to keep you on top of things as well. You have made a great start with your diet and as much as I agree with trying to cut out a lot of things I also believe that if you crave for something you should have a little otherwise the craving just gets worse.
On the computer, in the search engine, type in 'paleo diet'. You will find a wonderful recipe book that you will find very helpful........it's the one I use myself as well as using coconut flour to bake with.......yes, I still have some baked goods but they are healthy ones.
Coconut flour is very high in protein and has no gluten, raw honey or agave is used as sweetener and there are loads of eggs used as well. I think you will find it very interesting.
Life is what we make of it wether we are I'll or not........giving up and waiting to die is easy choosing to do what ever it takes to give us even an extra week can be a lot harder but a lot more satisfying and sometimes, we just have to make our own miracle.
Love n hugs. Chrissy0 -
HLB, I use Boswellia and Curcumin which comes from Tumeric.........lol.......almost.
2013, I bumped the thread so Cristina could find it.......as HLB said, it just bring the thread to the top of the active list but the same can be done with a post. Using 'bump' just means you don't want or need t say anything right then but want the thread noticed.
The Metro Dose Pak is Prednisolone which is a steroid and is supposed to calm body inflammation which can cause pain. With bone mets, it's that inflammation which is our greatest enemy so getting that under control is the best thing you can do for yourself. Because it is a steroid that is why it is taken in decreasing doses. Hope that helps.
Love n hugs. Chrissy0 -
Thank you ladies for all your insight. My arm and shoulder pain was because I was having two pulmonary embolisms in each lung. Port wouldn't work first thing yesterday morning at hospital they sent me to radiology intervention and I had a clot in port had two TPA's, but was too weak for chemo and faslodex. By the end of the day I had my PET scan and that took four hours for some reason and they sent me home. Phone was ringing off the hook first thing this morning and was told I urgently had to come into hospital because PET showed pulmonary embolisms in my lungs. So I went to hospital and had them blow something into arteries and now need to take injections of enoxaparin sodium 100mgs every 12 hours for 20 days. They stopped treatment of chemo and faslodex, feel the faslodex caused the embolisms but could also been caused by the tumors in lungs. Now have to have vascular treatment and stockings along with compression garment on arms etc. I walk 5 miles a day, never just sit but move, but have not done heavy weights etc., because of bone mets. Guess I just can't get a break. So all surgeries etc., are being put on hold til they work this out. Was told that I'm lucky that I didn't die from such it was so bad.
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Oh M360 I'm so sorry to hear this.......that would have been excruciating and yes you are very lucky. I had a knee replacement last year and ended up with a PE so know just what you are feeling. It's a good thing that they found them and have treated you quickly. Hopefully they will get some answers soon so you can continue treatment.
Love n hugs. Chrissy0 -
M360 what a story. I am inspired by your walking. I am working towards that and trying also to keep moving no matter what.
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Chissy thank you so much for your information's. I am so glad I found you.
I will see my doctor Tuesday I will ask to give me again ( I am sure they did ) the Her+2 or ER/PR+
I think I told you my breast cancer has come back and metastasized to the Pelvis wrigt shoulder and spine, my therapy is Flosedex and Zoledronic Acid this month they are given to me 3 times and after Tuesday every 28 days. Lots of side effect. I have 2 more radiation I did a total of 15 for the hip pain, it is helping.....
Thanks again
Cristina
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Cristina, if you are taking Faslodex you will be ER+ as that is one of the hormonals. The Zolendronic Acid is a bone builder so that treats the damage done to your bones and helps strengthen them. The radiation is a good way to also help with pain. I'm pretty sure you would be Her2- because if it were + you would be having an infusion of Herceptin each month.
When you see your doc on Tuesday tell him/her about the SE's (side effects) you are having as there may be something that can be given to help with those........if not, there are some naturals that can help.
Love n hugs. Chrissy0 -
HLB, Caryn, Sandilee, Naniam, the half-life of bisphosphonates is about 10 years, which means large amounts would stay in your system for a long time. Doctors mostly dismiss the danger of ONJ, but dentists certainly don't. My oral surgeon has seen the problem many times, and described it as horrendous. I'm so torn about what to do, because my MO is pushing me to take bisphosphonates. I think I'd be so worried if I did that the added stress would become a problem.
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Mary I think they downplay a lot of the SEs. Buyer beware when it comes to drugs as far as I'm concerned. I did read that the problem is usually only seen after 2 years. I have seen pictures of it online. It does look terrible and if I understand correctly you cannot fix it. You have to take antibiotics off and on forever to control pain and the bone is always exposed, it doesn't heal because its nocrotic and tissue won't grow over it. Scary.
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Yes, Mary, that is one of the reasons I will only have another 2 Aredia infusions. There is also the femur fracture issue. My mo is quite adamant about stopping the drug. My original mo wanted to do 22 infusions (1x per month). My current mo had me do 12 straight months and then once every 3 months for a year, which will make 16 total, when I'm done.
Caryn0 -
HLB,
You are right about ONJ, but it's important to remember that it is a low incidence se. Of course, horrible if it happens to you, but rare never the less.
Caryn0 -
I'm new to bone mets and have a single met to L1, has anyone here had vertebrectomy? If so how did it go and how hard was recovery...... I also have a choice of IMRT 25 fractions. What if vertebrectomy was curative ? Very slim chance but I can only hope, I'm 40 with 3 young children aged 4,5 and 8 and will do anything to stay on this earth to raise them. Thanks for any advise. I love this forum even though I'm in New Zealand. Kia kaha
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I try to take very good care of my teeth - to keep me out of the dentist office and hopefully will lessen the ONJ.
M360, that is scary; glad that it is under control
Caryn, I am always surprised by how drugs vary across country. Aredia is just not used much in our area. Always find it interesting.
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