Bone Mets Thread
Comments
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As for the tumor markers, they are unreliable a lot of the time. They seem to work for me though because for 6 years they were in the 20s. Then 77 and sure enough bone mets. 3 months after that was when I started treatment and he took another one for a baseline and it was 116. So now I've been in tx 2 months and hope they will be on the way back down.
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HLB I had rads for pain and was then put on Arimadex. I was on that for fifteen months. The mets I had were almost healed by that time but I had a small new one so the doc changed me to the Femara which got rid of that one and kept the others stable. Each none scan I have ( once a year) shows the bone slowly healing.
I do have pain from the mets but it is well controlled by Tramadol.
Good luck with your appointment.
Love n hugs. Chrissy0 -
Thanks Chrissyb! I hope this femara is working. So far I have no side effects at all, which I read can be really bad. So you onky get a bone scan once a year? I've bEen thinking my life will be scans every 3 months forever more. I guess it all depends.
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HLB my docs believe in not too much radiation and having the bone scan once a year is enough. CT's I get usually twice a year. If I were symptomatic they would be given sooner and I'm okay with that. The one thing that BC does for us is that it makes us more intune with our body and makes us listen to anything that is not usual and doing something about it.
Love n hugs. Chrissy0 -
I don't like the idea of too much radiation either. Hopefully since the TMs seem pretty reliable my doc will stick with that. I'm glad you are doing well. I have to admit I'm not as in tune as I should be with my body. Obvious things sure, but more subtle things I will have to pay attention to. Thanks for your help. I'm excited and nervous and really have my hopes up about todays appt!
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HLB I hope today's appointment goes well for you!
Love n hugs. Chrissy0 -
Thank you! Onc appt at 3 went well. XgeVa shot at 4...not so much. 5:05 and I'm in the waiting room still no shot. Just about to blow my stack.
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HLB and Ridergirlm,
Thanks for sharing this. I am on Tamozifen and will probably be so for some time. I wondered, too, why more aggressive things weren't tried. But I get the idea that you should save the worst when nothing else works. Switched oncologists, so I should know a little bit more in early October.
Scorchy
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Scorchy,
Love the kitty pic! I've always been a cat person. I'm on just tamoxifen and Xgeva too. So far, my tumor markers have been consistantly falling. I have a PET scan next month, so I guess I'll see how well my tumor markers predict things.
Lauren
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Well I had another TM today which I will get results of in a few days. Then my next appt is 4 months and we will do scans then to see how things are going. So hopefully tm is on the way down. It its not, then maybe we will have to do something before 4 months, idk. I also found out that we have an integrative doc now! He's been there for years as a Peds oncologist and now is doing integrative so I'm going to get a consult with him! Super happy about that :-D
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I met with rad onc today; she showed me the cancer in my T4 vertebra and it is large. making its way `to the spinal cord. i still don't have any pain at all and even the doc thought that was odd. the plan is to use low dose over a long period of time; she said that if i was in pain she would use a higher dose for 10-12 sessions to allevate pain, but since i am not in pain she is going to do low dose 28 times. anyone have it done like that> my biggest concern is damage to my spinal cord from rads...well, heck...cancer....anyway she said the way she is doing it with low dose longer tx time would be less hurtful to spinal cord.
anyone who had rads to vertebra and do you have spinal cord issues?
my cancer hadn't changed (per biopsy) in 10 and half years.
i meet with regular oncologist tomorrow and will get the rest of the plan.
any feedback would be helpful with those of you who have had rads to vertebra
thanks
diana
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Hi Diana,
Yes, I had rads to my T3, where I had a tumor and a collapsed vertebra. When I started my rads (15 treatments) I was numb from my chest down because the tumor was pressing on my spinal cord. I couldn't walk without assistance. Obviously, it was an emergency, and I needed to be treated.
The treatment worked. That was over a year ago, and I had an MRI this week, and the cancer has not come back in that spot. How much damage? The scans did show a decrease in my cord activity, but not enough to give me any problems. Two weeks after my radiation, I had my mobilty back completely. For me, it felt like a minor miracle.
It sounds like you have very good advice from your rad onc and she will be able to kill the tumor with very little damage to your cord. If you don't do the treatment, it's almost certain that you will suffer some immobility eventually as I did- so there really isn't another good option that I know of. It's good that you are catching it before you wake up and can't walk, believe me.
You probably will be a bit sore, and may even have some swelling or burning in your esophogus after a couple of weeks, but it goes away- won't be a permenent problem.
So yeah, go for it in good spirits knowing you are probably heading off a real problem. Good luck!
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Diana, I had 15 rounds of rads to my T7 & T8 for a tumor that was 'wrapping around the spinal cord and invading on the tissue'. It really was very easy and I have not had any residual spinal cord issues. Did have some of the esphogus burning but as sandilee said, it goes away. Good luck!
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Thank you sonnyb. It helps so much to hear this news. You have no idea.
Diana0 -
Folks, Anyone here ever have Denosumab injection?
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I take that, but call it Xgeva.
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It's amazing to me to read some of these posts. I had a tumor marker test done and it was 25, when I was first diagnosed back in 2007. Not one oncologist, after chemo, radiation etc. would do another tumor marker or lab until I had a GI doctor order a PET scan, because they found lytic areas in my spine during a virtual colonoscopy! This was 5 years later.The April PET scan lit up, mets every where but hands, feet and skull. I had some fractured ribs and remarkably little pain - unless I laid down on the ribs (right). Then the new oncologist did a tumor marker it was 768. I had a hard time believing that the scan could be true because I felt pretty good and just had some rib pain, transient back pain.
One of the first things the oncologist did was get a bone marrow biopsy in my hip. It came back complete replacement of bone marrow by cancer. The characteristics were exactly the same as the first pathology report. i had had episodes of bad back pain, but these episode always got better. I never expected cancer - denial cures everything I guess. This was back in April of this year. I do get sharp episodes of pain, I'll move the wrong way etc. if I get myself straightened out it subsides. I did have a PCP order a MRI of my back and it showed arthritis; that was in 2009. So the cancer started back after that.
Since April i have been on Faslodex and Zometa. My tumor markers have dropped hugely since the start of the drugs. I went from 768 to 136 in 6 months. I had a PET scan in September and there were no areas of uptake - clear! I was amazed. I still don't understand why there are 2 places in my back that give me grief. If I lay down then I am instantly better. I have 30% reduction in T12, damage to T11 and T10 and severe narrowing between the lumbar and sacrum. I guess it's all a miss mash of arthritis, lytic and sclerotic damage. Ugh. The tumor markers in my case mirror real improvement. My onc wanted me to try PT and strengthen my muscles. I am a little scared to do this until everything is well healed. Still I garden, play with our dogs(3), kids (3) and pretty much carry on the same. I have pain meds that help me sleep.
Have any of you had such good results with faslodex and zometa. Do you mind my asking how long it worked for you? My oncologist told me I had probably 1-2 years; this was at the second visit after the first awful PET scan. Now 6 months into treatment, He said wow this is good!
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Rosevalley,
I was diagnosed with bone mets, stage IV from the start in 6/09. I can tell you that Zometa has done wonders for me. I've been on it along with Femara for 3 years. I noticed a big difference in Pet scans a year later. You most likely will tell a difference in 6 months. I think my ibc breast cancer was still showing up until I had surgery 1/11.
Terri
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Scorchy: I have an injection of Denosunab=Xgeva once a month. Had it for 5 months so far with no SEs that I'm aware of. My tumours are shrinking but I don't know which of the 3 drugs is helping. Maybe it's all of them. I also have Xeloda, & on clinical trial, Soferanib both since June 2012.
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Had a phone message from the onc yesterday afternoon. He said the bone biopsy results were "inconclusive" and that he was going to be scheduling another biopsy.
I'm planning on calling his office and see if I can get an explanation of what "inconclusive" means. Did they not get a sample with cancer in it? Or did they find something surprising so they want to re-test?
Anyone have any thoughts on this?
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I think inconclusive means they maybe didn't have enough tissue to test.
Scorch I get denosumab shot once a month. So far I've had 3 and the third one kicked my butt! I fell asleep as soon as I got home, slept until the normal time, then dozed off at work all the next day. After that I felt fine and back to normal. I didn't notice it with the first 2 shots but I may have just not been putting 2 and 2 together because I started so many things at one time. I take that and letrozole and its definitely helping. In 2 months my TM went from 116 to 61.0 -
ibcmets Terri,
Do you get Zometa every Month? Does your oncologist say the bone damage from mets had been repaired? I don't know if zometa is something you can be on for long term.
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I learn so much from reading these posts. Thanks everyone.
I'm scheduled for a CT guided biopsy of the L5 vertebra next week. I'm really scared--had a laminectomy some twenty years ago now and that area has always been a weak spot. When I learned I had mets in that area I was surprised. Like many here, no pain. But then, I often have sensitivty in the lower back and I know how to deal with it. It was rarely--RARELY--dibilitating. Some Advil and I was good to go in no time.
Over the last week, however, that landscape changed. There has been increasing discomfort that has quickly escalated to dibilitating pain. At rest or in movement it is no different. I'm worried about fracture and really worried about that biopsy just adding to the pain cluster f@#k.
I get worried because I am a single woman. I have a very good and secure job. I have wonderful friends and colleagues and family (but not close by), but it's just me and that's really scary. I love the cats, but they just don't seem interested in doing the laundry. Fur bearing free loaders.
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Scorch, have you started any treatment yet? I am on xgeva and letrozole and from what i read on these boards it should take care of the mets pretty quick and hopefully the pain too.
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My MO says he will treat my single bone met with Tamoxifen alone, and he thinks this will take care of it. Is that the norm? Seems we should be doing something more aggressive, but I'm happy if we don't have to.
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Lana these little pills are very powerful meds and work very well at treating us. I know it feels like we're not doing much to beat back this disease, but we are. Hopefully when you have your scans again in November they will show you that you are doing a l
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i am so glad this thread is here; the information is so valuable to me as i wrap my head around treatment, your experiences and knowledge is so helpful to a newbie. the kind words and support also helps so much.
diana
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Sorry about the bone met Lana. I am also getting xgeva but maybe they don't do that with just a single met. The tamox should get rid of it, don't worry. And if by slight chance it doesn't there are lots of AIs that will kill it.
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Thanks ladies. I feel pretty encouraged by what I'm hearing so far. You know, oddly enough, I don't feel any differently today than I did yesterday. I always thought that, if I had to move to Stage IV, it would be devastating. Maybe it's because I had already prepared myself for the news, but I'm, actually holding up ok.
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hi, my onc said i would need radiation after my kyphoplasty, probably L4 maybe L2, 3, 5 as well. she said aroamsin and afinitor aren't working but i don't want to go naked until after consult, radiation wait a week and then start gemzar my third tx this year alone. this means i won't be back on chemo until nov. i want to know how long must i be off chemo which afinitor counts until radiation is it typically one week or two? I know it is only palliative level so i don't think my skin will get fried but at this rate i won't have any position left to sleep in. on did most who had radiation to lumbar get 5 or 10 tx? do we get tattooed and do we go in a mold or just lie there. at least table time is quick. i yelled loud enough so i got my first xgeva today and she wouldn't answer me as how did a slow moving ca progress to vertebral compression fracture while i was quote getting regular scans. sucky radiologists totally out number the good ones. thanks for letting me vent . glad to have the company in this new club. it is lonely in my colon mets club. i take it we lie on our stomachs for the radiation to the spine. more fun.
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