Bone Mets Thread
Comments
-
Thanks low-rider, that was helpful. As the tests poured in, all flagged, no one could figure out what to do, so to my horror, it just documented the cancer spreading. One of my docs kept mentioning the possibility of breaking my hip, another, my internist, finally stared me straight in the eye and told me why everyone was afraid to biopsy the 1st disc in my neck where it started, and totally flipped me out....
I, too, never felt limber after all the initial cancer treatment, but i was on lupron and femara for years. I had problems using my hands, balance difficulties and hurt all over so much that it was tough to bend down and do much. Then, there were the migraines and nerve pain.
Sadly, my cancer doctors followed me, but refused to acknoledge or have compassion on my symptons that they could or were related to treatment. They also never celebrated my surviving, either, but i went to male docs, who were on tge chauvinist side. These symptoms, in turn, led to isolating me from doing a lot of stuff, so i had fewer friends. My original cheerleaders left the scene, after hearing the surgery was not a complete success and the cancer was found to spread to the skin.... for months during chemo, they entertained and amused me, did things with me, made me think that i had a reason and future to live for, and it was really tough on me to abandoned....like that...
I have now decided to relocate. The area i was living in was boring, i want to try and get involved with support groups and cancer people and other stuff that will keep my spirits up. Gotta run, they warned me the radiation to my neck could cause mouth sores and i have a big one on my lip that just opened and started bleeding everywhere. Have to go chase magic mouthwash at a midnight drugstore.... tomorrow, i get my 2nd round of chemo and a butt hurting shot of fadoldex, in case i have any hormones feeding the angry beast.0 -
LowRider,
THANK YOU! Thank you so much for your profile of experience with bone mets.
I received my Stage IV upgrade a month or so after my Stage II diagnosis (in L4 vertebra and sacrum). It made me see the previous month as a walk in the park--who woulda thunk it? It's scary and strange, this diagnosis. You read the interwebs and think you'll die in 2 years. But since coming to the boards I've learned that the picture is so much broader. I am at once grateful for the company, yet disgusted that there have to be any of us in the first place. I don't know what I would do without reading the experiences, trials, and many successes of the folks here.
I will be mindful to pass the torch when I have the wisdom of perspective--something I will work very hard to achieve.
Warmly,
Scorch0 -
Girls, your experiences are interesting to read. Lowrider, very nicely written post.
0 -
Thank you lowrider and everyone for sharing experiences! I am trying to find out as much as I possibly can so I can ask good questions at my next appt. Hopefully that is when I find out that the letrozole and xgeva is improving things and shrinking the lesions! I have 3 sclerotic and one lytic, I think. The horsetail sounds very interesting! I am all for natural treatments! I read that bromelain, which is found in fresh pineapple, is also very good for our bones. I ate too much the other day and it burned my mouth. I looked it up and sure enough it was the bromelain, and it said make sure to get the whole core out and the burning won't happen. Since that is where the most bromelain is I am going to try using it in smoothiesm maybe in a smoothie it won't burn as much. My goal is to keep in these mets in the bone and nowhere else if at all possible. It took 7 years from my first dx for the mets to come and that was without any hormonal therapy so I am hoping that is a good thing, that maybe its a slow type of cancer. But who knows. If I learned one thing from these boards it how unpredictabe and sneaky this evil cancer is!
0 -
As a newbie kinda scared. Biopsy sept 11. Onc wants pathology on cancer. Then we go from there. Sigh. Cancer is just so hard. T4 biopsy.
Whew
Keep on!
Diana0 -
There has been no mention of bone biopsy for me although i have mets to pelvis spine and ribs. Dont know much more about them except..they hurt. Lots of great info and some lovely thoughts from the ladies here...thanks to all
0 -
Hi, haven't been here in awhile. I have the sclerotic lesions and we did a bone biopsy of my sacrum and with the Versed I felt no pain. I felt a bit of pressure. I was worried about the pain but with the Versed and something else, I felt no pain at all. It is my understanding that with the sclerotic lesions the bones try to heal itself, those areas are not as strong and cause cause pain and discomfort.
Carla, think that is who it was that ask if anyone else had skull mets. I do. It was found on my bone scan. I didn't like it when I heard it - know that the skull mets rarely becomes brain mets. Now for me it is just another area that I have bone mets. Know what you mean though about when you first learn it is there.
In 2 months will be a one year survivor of bone mets. I think I have said before they are really widespread, extensive -whatever terms they use to describe them. Knowing that bone mets rarely go below the elbows or below the knees - I have mets in every bone possible. The worst areas are my lumbar spine and pelvis. My hips/femur are now giving me problems. I also had a small liver mets and peritoneal mets.
I was on Faslodex for 5 months and had lots of progression of the bone mets. I finished 3 months of Abraxane and showed my bone mets stable and the liver was stable and the periotonal mets were very small now. So am on another 3 months of Abraxane.
My calcium level was never elevated, in fact, it is low normal. I was also discovered to basically have no Vitamin D. So I took loading doses and now take one Vitamin D tablet a week. So not all bone mets show an elevated calcium level. By my lab work, everything was totally normal and nothing showed up to suggest I had a problem.
I know that we are all different and have different symptoms and levels of pain. I have a hard time coming here though when I am in a bad place, overwhelmed. I've been there lately because of nausea 24/7 for two weeks, scans that required a very specialized MRI scan that didn't answer the question. Referred to a GI specialist to see what they think. I've stayed away. I read and it seems so many are handling things so much worse and if I sound off then I am just a wimp and a whiner. I try not to complain much to my family either - did to my husband the other day who knew I wasn't able to eat and that I just felt bad and I cried and he cried with me. That isn't a good feeling either.
I am older - there are some women my age that seem to handle the chemo treatments well and go on with their lives. I try but let me tell you chemo kicks my butt for the first 3 days. Oh, how I wish I could say like some women post that they do fine with the chemo and talk about how active they remain and all the things they do. Again, I wonder what is wrong with me. I was always the energizer bunny - but my batteries stop for a bit after chemo.
I have never had lots of pain - not for the amount of bone mets that I have but it is increasing and so is my pain meds.
0 -
Hi nanium, you can complain all you want as far as I'm concerned. I am feeling fine physically and only take letrozole and xgeva. My whining and complaining is mostly emotional, scared and pissed off that this cancer came back and reading this site for hours on end, just trying to get used to the idea, or see what other people do that seems to work. I hope you stay stable and don't have too much pain. Thanks for posting.
0 -
Thank you all for all the posts and information. I am reading ALL the bone met posts. As I said I am 10 and haft years out of initial dx. Shocking to have it show up. Sigh.
The biopsy is because so many years from initial dx. Her2 status can change. All my blood work was normal. Tumor marker gave it away. No pain either.
I love all the posts.
I hate being a newbie. I was an oldie on stage III. Lol0 -
Diana take your time on catching up so to speak, there's no hurry. You'll get to know all pretty quick and then it's just learning to go with the flow.
Love n hugs. Chrissy0 -
Bump
0 -
Dr appt tomorrow. Will be interested to see if the pathology of cancer has changed and what the treatment will be for bone met.
Sigh
Diana0 -
Folks,
Forgive me, I posted this same query to the Stage IV Hormonal Therapy thread. Just interested in hearing from as many people as I can.
I did not particularly trust my oncologist--just wasn't the right fit for a few reasons. Will be seeing a new oncologist in the coming weeks. One thing she was pushing me on was a biopsy of the bone mets in my lower back. I didn't understand the push, but I never felt comofrtable about it. I had back surgery some thirty years ago now, andit is a flash point of discomfort and just the thought of a bone biopsy in that area, frankly, terrifies me. Blind cold fear, peeps. So then she went from that to a suspicious node in my chest--which would need the services of a thoracic surgeon under general anesthesia. But I have a whole slew of suspicious nodes in my right axilla and they're clear. It all seemed so over the top. Can anyone maybe share their experiences in this vein?
The cancer was locally advanced when I was diagnosed; but confirmed lesion ion on L5-S1 confirmed three weeks in after the PET/CT took all the docs by surprise.
Thanks all!
Scorchy0 -
The characteristics did chane for my between the first round of cancer and the second round. I went from Her2- to Her2+. It's good that my onc can give me Herceptin now. But, I have to admit, I'm be afraid of a bone biopsy. I had a liver biopsy and that didn't sound nearly as bad.
0 -
Scorchy sorry dont really have any answers biopsy was never mentioned for my mets but i agree the sound of bone biopsy is pretty awful! Also just had to comment your signature line is fantastic! Lots of days my twisted sense of humour is the only thing left of the pre-bc me.
0 -
My imaging was not conclusive and it was thought unlikely that I had a bone met. Biopsy was the only way to confirm it. It was completely painless ( upper femur). Lots of Versed and other IV drugs similar to conscious sedation. Before I knew it I was in recovery munching on a turkey sandwich and joking with the nurses. It's been almost a year and I'm doing very well.
Caryn0 -
My bone biopsy is scheduled for this Thursday. I remember one reason the onc wanted me to have it was so they could confirm the ER/PR/HER2 status. I remember a study that came out in the last year or two that said 30% of the cancer in mets changed from the primary. And it seems like he also said something about having it oncotype'd. Since I was in shock last week and my next appt is at the end of this week, I'm not really sure what that is about. I was never given oncotype testing as an option since I was stage III with more than 4 lymph nodes from the get-go.
Right now I'm just worried that it might be aggressive. Turns out that what I thought was my hip being a little out of place ended up being the largest leision and the only one I feel (unless I poke at the one on my shoulder blade!). It seems like it's getting worse. Last week I could sleep on either side. Last night and tonight if I try to lay on my left side it starts hurting. The hurt is feels like the top of my femur rather than my pelvis but it's probably actually my pelvis.
I just want to get started on something besides the Femara! Throw some serious stuff at it!
0 -
Christy, the Femara is a powerful drug even though it's packaged in a small pill. I have been on it for two years now and it has kept me stable all that time. Give yourself time for the Femara to kick in and do its job. As a stage IV the docs like to leave chemo till later if possible.
Love n hugs to you. Chrissy0 -
I was originally ER/PR+ with HER2-, but when I was biopsied the first time, I was ER+/PR- and the HER2 was undefined. That always bugged me. Today I had a pre-op and met with the nurse, who actually asked me about my last biopsy. I thought, I could either say, it was all fine and be smiley or I can tell them how it was, a total disaster. I said, the heck with it and told them how it was. The nurse, actually wasn't all that surprised!! I told her how the radiologist was a jerk and I didn't care for his attitude. Since I was scheduled with him again (sigh) she said, let's get you a new radiologist. WOW So I walked out of there with a new guy and much weight lifted off!! He also assured me that there is definitely enough cancer there to get a good sample. Not sure if I should be happy or not!!
0 -
Diana. I'm curious as to whether your pathology changed as well. I have an appt Wed.I don't know if he wants to bx mine or not. I'm thinking if the letrozole is working maybe he will just leave it at that. Let us know how it goes. Good luck :-)
0 -
Christy i think i know how you feel about the meds issue. I am on tamoxifen, been told i will have chemo AND rads but not til later. Feels like i'm not doing enough now, and whats the later we're waiting for anyway??
0 -
I think the later they are talking about is when the treatment you're on stops working. Don't want to use everything up too fast if its possible. I sort of wonder too if I should have rads and just blast these suckers til they're gone. I think the assumption is that we will always have more cancer popping up here and there, so save the meds for later so we can live longer. You should also be on a bone drug as well as the femara though.
0 -
Hi there,
I have bone mets to my back and they couldn't believe when I was diagnosed that I was in no pain. Well, this past week I have been in a lot of pain. It starts early in the afternoon and carries on until I lie down. I made an appointment with my radiation onc because she said if were ever in pain just to call her and she would give me a dose of radiaton. But, if it's the cancer, why does the pain go away when I lie down?
Any feedback would be appreciated.
Thanks,
Laura
0 -
ChrissyB, how long did it take for the femara to show results for you? I'm just curious about what to expect. My appt is tommorow which is after being on it for 2 months. Will I most likely have my tumor marker down down, or the mets a little smaller? I don't want to get my hopes up if the norm is that they usually get a little worse before they get better! I can't help it though...I have fantasies about them being undetectable and the Dr saying its a miracle! LOL
0 -
Laura, I don't have any pain with my spinal mets. The only reason I found out was the tumor marker and Dr said they were tiny so I guess that's why I don't have pain. I have seen comments to the effect that you can get pain when the treatment is killing the cancer so maybe that is what's happening? Hopefully someone who knows more will be by shortly. :-)
0 -
One reason you can have pain with spine mets is because the cancer around the vertebra presses on the nerves. It might lessen when you lie down because certain pressures are off.
If you have any collapsed vertebra, you can also have referred pain that can be felt around to the front of your body. I had this type of pain, but radiation to my collapsed vertebra got rid of the cancer there, and gave me a lot of relief. It might be worth it to tallk to your radiation oncologist and see if they can locate the source of your pain. Maybe they can help.
1 -
Thanks, Ladies
I'll tell my oncologist that. Thanks for your concern.
0 -
Hi ya!
I need to let you gals and it would seem a lot of docs that those tumor marker tests are not always reliable. It took a whole year for the stupid docs to figure out that my bc went out of remission and spread to the bones. Even worse, i got scanned and scanned and more scans watching the cancer begin to run wild and unchecked, and no doc would do anything until they figured out how to get a safe bone biopsy, proving it was bone mets. Even i told one or two, it had to be the bc, because what other cancer did i ever have.
2 months pass, more scans and bloodwork and i remained untreated. Believe it or not, my tumor markers remained normal.
I finally met with a top onc last month and asked him what was the deal with those tumor marker tests?
He told me they are only helpful or elevated in 50% of cases.
I remember when i first had the bc, i had elevated tumor markers...
At the end of august, i finally was started on treatment...
I will leave the promise of pain relief from radiation for a different post....because someone tonight asked about it...
Sigh....
Sorry...years ago, i heard those tumor marker tests were not quite reliable. If anybody finds a link to more info about it, please post.
Good luck!0 -
Hi hlb,
If you find anything about a flare from rads, please post!!!
I had 20 sessions of rads to my hip socket and the first 2 discs in my spine. I could feel the bump at the base of my skull, the tumor had been invading the soft tissues totally shrink. My migraines, and i dont want to jinx myself, substantially lessened.
The neck lesion was the most important to intercept. I did get burned, an ear infection and an awful blister on my lip that kept opening up and bleeding, freaking people out.
The burns are still healing.
However, the 2nd week of rads on my hip, it started to make it hurt again....it hasn't stopped...
I need to be able to walk!!! I finally spoke to my onc's nurse. I said that i did not understand. The hip was being included in the rads session along with my neck for pain relief....everyone told me that it would make it go away... the nurse said that it sometimes takes time, and otber times, it doesn't work.
She told me that i should not go too far anyway...the cancer has made my bones fragile and i can end of fracturing something really easily...lovely...
I am not a candidate for any of the bone building drugs because of dental problems....
I don't know what the right answer is.... instead of guessing, i wish they'd send me off for a test to see what is really going on.... oh wait, that costs $$$... oh well, we may just have to wait until i break my hip to finally get an answer.
Sorry for the frustration. I am getting really bored and have not been able to get very far....
Chemo & 2 big butt shots tomorrow...yuck...0 -
Darn, sorry to hear that you can't seem to get rid of the pain. There are other natural ways to build bone density that you may want to try. Someone posted about using something called horsetail and it really worked well. Just do a search for that word and you should find it. Another thing that is really good for the bones is bromelain. Which you can get in fresh pineapple or in a supplement. The core is the part with the most bromelaine, which most people don't eat, but it is edible, just really chewy. Or you could throw it into a bullet with a smoothie. That's how I get most of my healthy foods that I don't like to eat. There is also of course weight bearing exercise but I'm not sure how feasable that is in your situation. There's also the procedure where they inject cement into the damaged bone.
0
