Bone Mets Thread
Comments
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So the doctors are still saying 2 to 5 years. When I was diagnosed in April 2006, I called the office of the first oncologist I saw to say I chose a different oncologist. That evening the doctor called me at home and said the pet scan showed bone mets. She told me I had 2 to 5 years EVEN THOUGH I NEVER ASKED HER. So next April I will be reaching 7 years!! I can honestly say that other than aching bones and muscles the 7 years have not been bad. Meds have been arimidex for two years, tamoxifen for two years, and now faslodex. I am now 69. So please don't believe what you hear as the anti estrogen meds really do work even though they are such a tiny pill.
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I've been having this aching pain for months--especially when I wake up. At first I thought it was my lungs and now I think it is my ribs. I don't know if I should bother them about this. It's not really intense pain. I can handle it with tylenol. Any advice would be appreciated.
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I also have bone mets (single met to sacrum). My onc has never talked prognosis - he says what I have is a chronic condition.
When I first started going to him, he said, "I'm a great doctor, but I'm a lousy prophet". So no time lines.
Just excellent medical care, compassion, and caring.
Leah
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I also believe the internet stats are way out of date. THey relfect studies that ENDED many years ago. There are always new treatments coming along and, while none of them are the magic bullet, they can extend our lives. Also with the ability to 'soften' the SEs this makes it possible to endure treatments longer.
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I agree that the stats are out of date and do not reflect how anyone, as individuals, will respond to tx. Both my mo and ro said I should be around for many, many years and like Leah's doctor, will treat it as a chronic condition. There are no guarantees but much reason to be hopeful.
Caryn0 -
That is an awful thing to tell someone when they didn't ask! I am very careful not to ask. I don't want any kind of a timeframe to die in my subconscious, unless its at least 30 years. My onc is pretty careful to be vague about it too, if I'm reading him right. I wouldn't put much weight in the 2-5 year nonsense.
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I don't think about stats or prognosis. I really try to just stay in the moment and do the treatments. I am 60. Was initially dx when I was 49. Keep plugging along and really just do the day. I hate being back in Tx but that is what you do when you have progression. It is the life of a cancer patient. Sigh.
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Kayrnic,
Thanks for the input. I'm thinking I'm not going to buy that leather couch and char and ottoman now. I'm going to need to save money to buy my cobra for the day I go out on LTD. That's what I'm thinking. Before my dx, i was planning on refubishing my living room and ordered carpet and these beautiful leather furniture. The carept I can't send back as it as special ordered but the furtniture I can cancel. I just can't see spending the money now. I may want to use it instead for a trip or something else instead of stuff.
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Thanks all for your input. I guess I'm a planner and its hard for me to not have everyting all mapped out. I thought I had it mapped out before the dx just before thansgiving. I know it is treated as a chronic disease, its just that this chronic disease is much different than a chronic diabetic disease or chronic rheumatoid arthritis. I kind of feel that's a "catch phrase" and it sounds good to tell to people becuz its easer to take. But if I'm understanding this stage IV and what it means is that eventually, there is nothing that will work and keep it t bay. But that's after hopefully many wonderful years of treatments that keep me alive. I just want to know the truth, I don't want it sugar coated and of course I know no one but God knows the answer. I'm really struggling with this and maybe its because im newly diagnosed and also waiting on more tests to rule out mets to my lung.
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Laura Ontario,
Trust your instincts and call your doc. Its better to acknowledge it and tell them than to try to tough something out. That's my opinion as I've leared along the way. I asked for a check x=ray at a rad onc visit because I was having some trouble breathing and coughing and sure enough, I had pneumonia in my right lung even though when she listened to my chest she said it was clear and I had no fever. We know our bodies and we need to trust our instincts. So call for your peace of mind.
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One more thing to add Laura. I never had any intesne pain to tell me I had it in my spine and hip so you cant always go on what your pain level is.
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Just stopped in (after a long while of lurking) to say hello. After a month of confusion and almost a mis-diagnosis (I was originally told in November that I had bone mets but then there was some confusion as to whether it was really bone mets or a large hemangioma), I was told (again) that I have bone mets in my L1 vertebrae. That currently appears to be the only place in the bone and the MO thinks that the Femara I started preventively on May 1 has already kicked in and kept it from spreading further (along with the original tumor's low grade). I've had a bone scan and MRI w/contrast of the spine and brain (brain was clear). I was scheduled for a PET scan but it got canceled during the confusion. That will likely be rescheduled for some time in January.
For now, the plan is to keep on the Femara and have 10 courses of radiation tx to the area in January. I'm also now on monthly Xgeva shots (I had been on oral Fosamax for osteopenia but my stomach just doesn't tolerate it anymore).
Anyway, I thought it was time for me to be less a lurker (no promises...I'm inherently pretty introverted) and to let you all know how wonderfully helpful you have been in helping me to understand this diagnosis. Thank you so much.
Sending Light and hugs to all.. Elisabeth
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Hi Elisabeth. Another stage iv newbie here saying hello. Also diagnosed with 2 spinal mets right before Thanksgiving. I'm sad we have to meet this way, but like you I'm grateful for all the support here. Wishing you much success with your treatment.
Hugs and prayers,
Cathy
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Welcome Elizabeth, I'm learning too and newly dx the week before thanksgiving. There are so many wonderful women on here who are helping us new people with all our questions. Thank you everyone.
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Elisabeth,
Welcome and glad you decided to post. I have one met to my L2 vertabrae. I was diagnosed in march of this year. Radiation to the spine was very easy. Let us know how it goes.
Kay0 -
Elizabeth and Kay, did you have pain in your spinal mets? Just wondering because you both had rads. I have not had rads, just letrozole and xgeva. I haven't had any symptoms of mets; they were found because the tm went up. I'm guessing rads are being saved for later when and if I do get pain. Welcome Elizabeth :-)
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Hi everyone, I haven't been on for a while. I was busy being tested forn bone mets to my brain and hip bones. Well I got the results today and fortunately my brain scan is clear, but I do have Bc mets to my right hip
. So now my whole treatment plan will be changed and I will begin chemo with Paclitaxel. I am trying to be possitive about all of this but it's hard when I really don't understand what is going on.0 -
HLB, I didn't have any pain in my spine, but the oncologists didn't like the look of the vertabrae. They felt it was in danger of fracturing which I guess is very painful. So they radiated to help avoid a fracture.
Macyhen, so sorry they found mets. I'm sure it's all so very confusing, especially since it looks like you're still in the midst of treatment from your initial diagnosis. Basically, you will most likely be on some kind of treatment forever. But not necessarily chemo. This is a great place to come to for support and answers. Let us know how you're doing!
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Dear Ladies:
Thanks for the advice. My nurse came over to change the bandage on my PICC line yesterday and I told her about the rib pain. She immediately called the cancer centre and they're looking into it. I'm relieved because the pain has actually gotten worse. Thanks again.
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Thank you Kay!!! I love coming here I get so much information, and understanding from you ladies. It's so wonderf to have somewhere to come and ask questions and get informative and compassionate suggestions and answers.
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Thank you all so much for the warm welcomes. Sorry to not reply more quickly. I tend to read (on my tablet) more than I post so it sometimes takes me a bit to get back on a keyboard to answer.
I actually did/do have quite a bit of increasing pain in my mid- to lower back, along with chronic headaches. I first mentioned it to my MO in early August and they finally got the bone scan done and then scheduled the brain and lumbar MRI. Brain was fine and we all figure my headaches are at least partially due to the back pain and the tension it causes in my shouders and neck. Along with the one spot of mets, there also appears to be some degenerative disease at work in my lumbar area so it's hard to tell if it's the mets or the degeneration that's causing the pain (or, most likely, a bit of both). The mets has virtually destroyed all of the internal portion of the L1 vertebrae but has been confined to the bone/bone marrow, so that's great news. Radiation will hopefully kill all the cells in the bone and then they will have to decide if some repair is possible in that vertebrae. The Xgeva should help prevent further degeneration, too.
Tumor markers don't appear to be reliable for me so the only other thing that they saw outside of the increasing pain was that I was becoming more and more anemic...which I guess in not uncommon with mets that is in the bone/bone marrow. Two weekly doses of Feraheme put me back in the low normal range so we'll see if that holds. Also, my D3 was down to 20 (their normal range is 60-200) so they put me on a daily supplement of 2000 mg of D3. I don't know what the significance of low D3 is in relation to bone mets, specifically, but I do know that it has a correlation to breast cancer. Hopefully, someone smarter than me will explain it if there's interest.
As others have said (and my MO stressed), any pain you have that continues for more than 2-4 weeks needs to be discussed with your MO. On the face of it, I am an unlikely candidate for mets but it DOES happen on occasion and any chronic or worsening pain needs to be brought to your MO's attention. I felt really fortunate that mine didn't dismiss mine.
If it helps, I have never had chemo and this is my first round of radiation (I chose a mastectomy so I could avoid rads...oh well). It is my understanding that I will probably be on Femara and Xgeva only (with rads as/if necessary) as long as possible, and then there's other options before chemo is even considered. I am highly ER (100%)/PR (97%) positive, however, so the Femara seems like it's my strongest weapon right now.
Sending hugs to you all. Elisabeth
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MacyHen, good news its not in your brain! I know we all find the strength we need when we are at our lowest. This place is so helpful to me becuz we can let it all hang out here and not worry about trying to sheild someone from our fears.
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Elisabeth,
That is a fairly common tx plan with limited bone mets. I had one met to the upper femur (no pain or symptoms) and went on Arimidex and Aredia immediately as well as having radiation to that spot on the femur. I have been NED for a little over a year. I have also never been on chemo and plan on saving it until the AI's don't work anymore. Best wishes for you.
Caryn
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I have extensive bone mets and also chose to not start with chemo. Eight months on Tamoxifen, Xgeva and Lupron and most of the mets have regressed!
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Elisabeth......D3 is important to help your bones absorb calcium. If you don't have enough vitamin D, the calcium won't make it to your bones where it is needed. I take both vitamin D and calcium supplements by oncologists recommendation.
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Dx in august with single bone met to t4 vertebra. 25 rads , femara and zometa 1x month 2 years. Optimistic. Hang in
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Elisabeth,
So sorry that you are with us here. I remember reading maybe 2 months ago or so that they had misdiagnosed mets, and it turned out to be something else. So now, they have proven that it is mets after all? I'm so sorry. What a roller coaster for you.
I was dx'd in October with lung and bone mets at the same time, and I think because of the lung mets my onc has me on chemo (Xeloda) along with Tamoxifen. I can tell you, in just these past almost 2 months now, I have significantly reduced pain in my back. Like - unbelievable, almost. I always had a touchy lower back (my whole life), and I thought my increasing pain was just me getting older (I'm 46) with that touchy back that has 3 bulging disks. Little did I know that most of my pain was coming from the mets (as evidenced by the fact that the pain is so significantly reduced). When I first started on the Tamoxifen I had a flare, and my pain increased tremendously...but that subsided at about 3 weeks. I just woke up one day, and I wasn't in pain. I hear that experience is quite common, and is usually considered a good sign that the Tamoxifen is working against the bc cells.
Ladies with mets confined to bone only can live for many years! And, let me revise that to say that people with bc mets can live for many, many years too!
LL
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I don't know anything about bone mete. Is it better not to begin with chemo? My onc has changed my chemo plan completely. Instead of act she is starting me on taxol. I really don't understand any of this. Help!!!!!
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Macy I see you are only ER+ and the others - (neg) depending on how strongly you are ER + you onc may be treating you aggressively because of this. I'm strongly both ER and PR + so I am being treated with an AI.
All the types of BC pretty much dictate the line of treatment given but what ever is given is given with the hope that it will knock the cancer out of the ball park.
If there is anything specific I can help you with just ask and I will do my best.
Love n hugs. Chrissy0 -
Welcome to the new ladies!
Today is my monthly visit with my onc. I have one piece of good news for him. After about 2 and a half years of chronic headaches it appears that they are gone! I was given multiple scans to the head but never found anything. Since they were tension headaches and my shoulders/neck area always felt like rocks, we suspected that the cause was from the tensed muscles. He changed my pain med from Vicodin to Methadone two months ago just so I would get the 12 hour relief rather than 4-6 hours. One of the side effects of methadone (for me, anyway) is sleepiness from the relaxation of the muscles. Sure enough, my neck and shoulders started relaxing, then cracking and then - no headaches!!
I also have some news that isn't so good. My lower back, across my pelvic area, has really been hurting. If my methadone wears off (like in the morning) then I'm in pain. It takes about 30 to 45 minutes for the med to kick in and during that time I don't want to do anything but sit in the recliner. I'm not sure what this means. Could be the Femara is finally causing the extreme achiness that I got after 6 months on Aromasin. Or it could be the mets are getting worse.
I'll take an Ativan around 1 so I'll be ready to see the onc at 2:30.0
