Bone Mets Thread
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I'm re-reading this thread from top to bottom because recently I've had a lot of stubborn bone pain, mostly in my hips/pelvis. I've got scans in a couple weeks and am pretty certain they will show progression in the bones, though I'd love nothing more than to be proven wrong.
RangerMom- like you, I've been in bed, clinging to my heating pad. Please keep us posted when you get your results.
I've had bone mets in my spine for over 3 years, but this is the first time I've really had real bone pain. It is awful! I can't sleep and I can barely walk.
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Rangermom, sorry the pain is knocking you down. I find my pain is worse at night and I take Advil PM to get relief and help me sleep. I'm trying not to consume the heavy duty pain meds because they mostly make me sleepy and goofy. I find if I'm distracted I don't notice the pain as much, but when I come home from work and sit for a bit that is when it starts barking. Started TDM-1 two weeks ago and I hope my scans in a few weeks show something positive. Let us know how yours go and I hope you feel better soon.
You too nancyh. I hope you can get the pain under control and that there is no progression. It stinks that not only do we have to deal with cancer, but also the pain from mets and from our treatments.
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Amen to that last sentence of yours, swimmom--the things we we have to deal with, do indeed, stink!
I don't think I've posted on this thread, yet. My bone mets were discovered after a car accident and the resulting CT scan for internal injuries in November of 2011. In May of 2011 I had a second primary tumor found in the same breast that had been lumpectomi-ed and radiated in 2003. (I had a unilateral mastectomy in June.) Way back in 2003, I took Arimidex for five years and spent a total of eight years thinking I was cancer free. What a terrible surprise and a scary "smack in the face" to learn I had Stage IV metastatic breast cancer to the spine. Blah.
I've been taking treatments of Faslodex and Zometa for about 16 months. Since then, I have been stable, have had few side effects and no pain from the cancer (eventhough I have a compression fracture, bulging discs and other bone abnormalities in my mid spine).
Unfortunately, my arthritis (in ankles and knees) has become more painful. Double blah. My worst pain is a nerve that is entrapped by my L-5 and S-1 vertabrae. The pain shoots from ankle to hip of my left leg and keeps me from walking around like a normal person. I have to sit in a chair to do dishes, laundry, scrub bathrooms, etc. I finally retired from my teaching job and I can't even go shopping with my girlfriends without needing to sit down every ten minutes. Yep, I do see a pain doctor and he's tried several nerve blocks but they don't help completely or, for very long. I've been waiting almost six weeks for a radiofrequency ablation to take effect. Frankly, my pain is worse and I am so discouraged. I understand about going to bed with the heating pad and trying to avoid pain meds because of the loopy feeling they cause. I have that feeling of being caught in a trap. I'm so sorry you girls have to be trapped along with me. ((((Big hugs to you all!))))
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Today pain is easing up and I can walk better and get up and down out of the car and chair better. Whew. Major relief. I was afraid I was stuck with this. Ariel - do you have mets in the L5 - S1 area? I have rheumatoid arthritiis too, dx when I was 32 (now 58). It stinks. just having that excrutiating back pain for a week was depressing so I can only imagine at how down you must feel. Hugs to you too and please let us know when you do get some relief and what worked, we can only keep hoping for better days, right.
Swimmom, today I took back and body pain relievers and it really helped. Its made by Excedrine and Bayer too. I was able to work with a clear head and it helped a lot. Bone scan is this Wed. Hope I get results the same day. I'll post once I hear.
Question: if I do have progression, what drug do they go to next if i'm her2-,
ER+? thanks0 -
Thanks for the cyber hugs, rangermom & glad you found some pain relief, too!
As for possible mets in those slipped vertebrae--Nope there are no cancer lesions at or near my L-5, S-1.
I guess that's a good thing because, if all else fails, I can have surgery for the entrapped nerve. Still, I am very, very tired of the leg pain. I really dread any kind of surgery but, I'm more open to it these days.
My bone mets are ER+, too. I haven't asked my oncologist "what next?" if the faslodex stops working. However, I have heard some other women mention Xeloda or Xegava as a follow up to Faslodex.
I'm sending out good thoughts for stable scans!
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ADJ - I have been wondering that too. I am on a pain patch, Fentanyl 50mcg/48hr, and also take ibuprofen PM at night to help ease the pain so I can get to sleep. Yet MO says I am NED and bone scan says that I am not at risk for a fracture! (That is a first) I still have all the same bone mets, just no new ones have shown up so he says I am stable there. My TM has gone down to 29 which is good news. Just wish the pain would go away or at least they could tell my why I hurt so much. I have always had a high tolerance for pain, but now I am beginning to wonder if that is still true.
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Elisimo
I have bone mets in hips, femur and pelvis. I have been lucky to not have spinal mets since it seems to dole out more pain from what I am reading.
I had an episode of severe pain in my right hip that made walking difficult, sitting almost impossible. MO xrayed and could not find an explanation.
Answer came 3 months later with repeat xrays. My pelvis had fractured in 2 places. It was healing and it was the healing that could be seen. I was told that some fractures are so fine that they can't be seen immediately.
It has made me very cautious about pushing through pain...not a good idea to be stoic sometimes. It has also made me an advocate of periodically re-examing unexplained pain issues.
The fact that my pelvis fracture registered as pain in my hip also confused the issue.
I hope that you can get pain relief and answers soon.0 -
I had terrible pain in the rib area and thought for sure I had progression. I got the results of bone scan yesterday and no prgression and no new areas. I changed Oncologist and I am having my first appt. this afternoon. Previos onc. never answered questions. I heard the new one is great.
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Good news Barb312! I hope you like your new oncologist!
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Barb312...I too had rib pain for a long time (pre-mets Dx) that never showed up on any chest X-ray...turns out I had a fractured rib that didn't show up until it started healing. Bizarre! I hope your new onc can get to the bottom of it!
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Rangermom, thanks for the excedrin back and body suggestion. I'm going to pick some up tomorrow and add it to my aresenal when my back is really barking (like now).
Aerial, sorry your RA is giving you so much pain. I have osteoarthritis in my neck and hips which of course light up every scan I get. Luckily, they don't change and have been looked at by many radiologists who all agree it's arthritis. It runs in my family and I had symptoms in my 20's so not surprising that it is pretty advanced at age 49. With my daily dose of advil at night, I've actually noticed that my neck and hips feel better--of course my spine still hurts, but I gotta look for some silver lining.
It seems like everyone is having pain issues lately. I was doing well for a while and now after this weekend, my back is worse. I had scans a month ago so I'm hoping this is not symptoms of progression. I'm thinking this frigid weather and how busy we've been at work is causing a lot of my pain. I work as a teacher's aide with special needs students, so it's quite physical. When I get a good nights rest I feel better in the morning, but by the end of the day, my back is bothering me. I see the MO in about two weeks and if it still bothering me we will have to address it. I'll be due for scans too for the TDM-1 trial so I guess it will all time out well.
Wishing you all a night of pain-free sleep.
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The new oncologist was great. Great personality and told me more then the other one did in a year. First of all he said that he would have started my treatment with hormones only. He would not have given me chemo or radiation. I just have to put that behind me. I will stay on hormones and zometa. He said I have minimal disease and he would even take the port out if I wanted him to. I might do that this summer. Does this sound to good to be true? Barb
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It sounds great Barb. Glad you got off to a good start with the new doc. I would go with what he says.
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Barb that's great! I wondered why it seemed some people got chemo first and I figured it was because of triple neg or having a lot of disease they wanted to shrink quickly. Limited disease and hormones only sounds great to me!
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As stage IV all treatment is considered as palliative not curative so they normally want to start on the most gentle treatments in order to control the disease but still allow a good quality of life.
Barbe what your new onc is proposing is all good and will allow you to control the disease you have. I have been on an AI only since dx stage IV and it is controlling the disease and giving me a good QOL as well. Go for it and enjoy.
Have a good day all!
Love n hugs. Chrissy0 -
Just have to chime in here. My onc is going for curative rather than palliative. I only have the 2 bone mets and they are hoping to kill it all off for a few years at least with chemo, rads and back on tamoxifen. I don't want to "control" it for as long as possible, that's just not acceptable.
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Okay, got bone scan results today. I am upset and let me tell you why. Last friday my lumbar x-ray said " 7 mm lucent area in the superior aspect of the L4 vertebral body. This is nonspecific. Given the patient's clinical history, a small metastatic lesion is not excluded." Now its known that I have a large lesion on the T7, one on the T9 and the right iliac. So on today's scan results they didn't even mention any comparison or review of the lumbar L4 area. They only compared this scan to my last scan in Nov that had no lumbar L4 area then. This L4 just happened. Do I have reason to be upset? The final impression was there was no new metastatic areas. But I have to ask, what about that L4 on the lumbar x-ray and what about the pain I still have in my lower back ab ove my tail bone? It feels like a needle is in it? I will call my onc tomorrow and express my feelings. Do you think I should ask for the scan today to be re-read again and especially in comparison to my 1/18/13 lumbar x-rays?
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also, this bone scan today mentions There are focal areas of accumulation which include but are not necessarily limited to the following sites: (what the heck does that mean???) He mentions an area that was not mentioned on my last scan, the cervicothoracic junction of the spine. What the heck? To me that's a new area. The previous scan said T7, T9 and the right iliac bone. I get so frustrated with their mumbojumbo.
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Stormynyte - I'm so happy for you that your doc is using and saying that approach. You claim that and go for it
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I know it might not work at all. I know it will come back sooner or later even if it does work as far as we can see, but I am so very happy that I didn't get an onc who told me that chronic stuff. I don't think I could deal with that even tho I know that's the way it normally is.
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I saw my oncologist today. She said the cancer is progressing in all the areas I've complained of pain. The pain comes and goes so I guess I can't complain about that too much. She is taking me off tamoxifen and putting me on another hormonal, but continuing with the pamidronate. My bone mets are all through my body pretty much. What do you think my prognosis is?
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LauraOntario,
So, so sorry to hear you have progressing mets. That really stinks. How soon till your next hormonal, do you know what it is yet? I've been on Faslodex for 3 months almost. I've heard it works really well. I'm not sure about me yet, waiting to figure out if I have progression too. Please keep us posted. I personally think prognosis is good, because they caught the progression and will soon have you on another medicine. My onc said she will do the same for me, and that she has lots of medicines to go to. I am confident we will find one that will get me stable and you will too!
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Also, there are there women on here who had progresssion then found a med that got them stable! That's why this board is so important to me, it give me hope and encouragement. Can you all join in and let her (and me) hear again from those of you who had progression then got it stable. Thanks
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Thanks, Rangermom
They are going to put me on the new hormonal right away. I forgot to ask what it was. (Could have done some googling). Hope you don't have any progression. I find you ladies so helpful. I knew that I wasn't in as much trouble than if it had spread to an organ because of this forum.
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Stormy, right on! I hate that word palliative.
Rangermom, I have 4 mets on my spine, L1,L2,T6,T12 (I think) and about a month ago I had some pain in the middle of my back so I looked at my bone scan report and I noticed I also have a met on the manubrium. I sort of wondered if I should be upset because onc didn't mention it. I asked him about it at my last appt and he said "bone disease is bone disease". So I'm not really concerned that I have 5 instead of 4. I think. I guess what I'm saying is I wouldn't worry about it too much. Of course since its giving you pain it natters and I would def ask him about it! But I don't think it makes a difference in treatment or prognosis (in my unexpert opinion).
Laura, I think the prognosis is good, just switch to the other antihormonal and it will prob start shrinking the buggers again! I'm on letrozole and I'm learning when they work they are really powerful and good at keeping things stabilized.0 -
HLB, this is new though, the L4 is a new area and that's what has me concerned that this med isn't working
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I guess too, I want to get to a stable point in my life. I haven't been stable since I got this nasty disease back in Mar 2011. It keeps on giving. I'm frustrated and worried
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I agree! This board is how I knew I wasn't in as much trouble as I thought at first. Still sucks but I have seen so many people here that have lived 10+ years with bone mets and are NED or stable for long time periods. And those are just the ones who post! The ones who don't are going even longer! I think a lot of people get settled in so to speak and when they are over being shocked and get used to the idea of having cancer but then realize they are not dying any time soon, then they don't come here as much and get on with life not fretting about it so much.
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I am 74 and chemo was really tough on me. I used to walk 4 miles a day . New onc told me walking, water aerobics and yoga is the best thing I can do for myself. I will give it my best shot.0 -
Oh I see, Rangermon. Darn. Well I would certainly bring it up then but try not to worry too much. Like you said, the right drug will be found! Its scary though, waiting to know for sure. I'm finding out that nothing seems to move gast enough. It seems there's no sense of urgency with the docs. Right now things are working for me, but for awhile I was onsessing over how we we're going to find out when it stops working, and if I would be switched to a new one fast enough to stay ahead of it.
I want to add to my last post, I also have seen pretty many other mets doing well for a long time too, not just bone only.0
