Bone Mets Thread
Comments
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Chrissy - sending extra prayers for you and your family. Love you my dear friend.
I have lost all my parents, my Mom in 1989, my Dad in June 2010 and my loving stepmother in May 2011. I was dx in July 2010 so none of them knew about my cancer and I still have not told my sister and brother.
Rangermom - I also get the "you look great" line a lot and it does get annoying at times. I almost don't want to go to church anymore because I know I will hear it so many time that day and I may or may not be feeling very good. When they ask how I am doing I say I have good days and bad days and leave it at that and let them assume that since I am there it must be a good day.
Kasi - I have extensive bone mets and the pain is unbearable at times and everything hurts from the top of my head to the tips of my toes. I am currently on a 75 mcg/72 hr Fentenyl pain patch that I have to change every 48 hours instead of the normal 72 hours. Still some days I am fine then I go through a spell of extreme pain that I go to bed crying and wake up crying every few hours at night and the only other thing I can take is ibuprofen! And that does not do much good. I have had radiation to one area on my spine and it did help a lot for a long time but it now is starting to hurt again in that same spot as well. I don't know what to tell you to do about it since I have not figured that one out either. I just wait for the next cycle of not hurting so much all the time. Sorry you are having to deal with the pain issues too.
Gentle hugs to all. AJ
AJ
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Chrissy, so very sorry to hear of the loss of your dear mother. I think about my parents and often wonder who will go first. I hate the thought of them grieving if its me and I know they worry a lot, which I hate.
One of my parents friends, a wonderful and loving lady who prays for me every day, but a meddler, asked me to talk to a breast cancer friend of hers too. I don't know the stage but I'm pretty sure its not 4. She's so nice that I feel guilty for thinking it, but she is a pain in the butt when she does this crap. She already tried to fix me up with her husbands son which of course didn't work out but we did meet up and have a few beers and a nice conversation. I'm pretty sure he thinks she's a pain in the butt too. But he said she means well lol!0 -
Hi to my new sisters, im new to this all but feeling like its been a lifetime. I began my plight into this world 'officially' last june,when a biopsy came back positive for idc then the second to lymphnodes. Then the bonescans showed a small 'possible' cancer mass on the lower left sternum. Biopsy too much life threatening risk so nogo. They staged me at IV and would treat as cancer. I got thru four mos chemo with no se. The huge 'biopsied 'tumor shrunk to halfsize. The lymphnodes as well tissues looked good,BUT....the smaller second lump in breast didnt respond to chemo nor did the sternum spot. i was told they didnt believe sternum was cancer and i did break a rib in that area in 96,a werk later i get a call from onc sur ho now says they are confident to conclude it is meta canc on stern and im officially stage IV. More mris and another failed attempt to biopsy second lump this time. Too close to chest wall. I plan to gey a lumpectomy.but not sure what the onc sur wants me to do now. Also sch for rad to bone n breast following sur. Oh,and my bone scan lit up also across my hips,pelvis,lower & upper spine,neck and across shoulders which im told is early arthritis coming on strong &fast.
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Oh,and my physical pain is minimal, my joints hardly work at times and i feel like an 80 year old woman when i stand up and walk. Cancer sucks to put it mildly. The red tape BS we are put thru sucks more. Thank you all for sharing as it has been much more informative than any doctor this far. Any heads up on tips re what can be expected or what your experience had been with similar dx, please do tell. Thanks n
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Hi Krayz and welcome! Do you know what staus your cancer is? ER /PR etc. this will help us help you with information. Getting the news that you have BC is not easy but to then be not sure what stage you are would, I'm sure, really make your head feel like it didn't belong to you........hopefully things will calm down a little for you soon as finally they have decided you are stage IV.
Being stage IV can mean a whole lot of soul searching but really, with treatments that you respond to, you can live a long and productive life. Hoping the arthritis doesn't cause you too much agrivation.
Love n hugs. Chrissy0 -
Kraywolf,
I was diagnoses stage IV ibc, idc & bone mets in 6/09. I'm on Femara & Zometa now. I took both of these for 3 years, now taking Zometa once every 3 months. I did get pretty bad arthritis in my knee. I thought it was from too much Zometa, although this drug has kept me stable for 3 years now. I don't have as much back pain and my arthritis resolved quite a bit with daily walking and working out with light weights. I felt like I was 80 when I first started Femara, it lasted about 6 months. Moving is the best thing for me and I feel much better, but will never be where I was b/4 cancer.
Best Wishes on your treatment.
Terri
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(((((Chrissy))))). Hugs
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Chrissy I am so sorry for your loss. Sending hugs and prayers.
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I saw my parents over x-mas. They told me I looked good and I told them I felt like I was 80. My Dad told my that I can't say that since I've never been 80. I told him that I knew because he's almost 80 and I get off the couch just like he does, even down to the same grunts and groans.
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Chrissy, my sincere condolences to you and your family. Sending good thoughts your way.
Krayz, I have to lytic lesions in the lower spine. When they flared as a result of Tamoxifen they set off a whole series of painful events. Since L5 and S1 can't support weight as they used to the burden is being carried by the vertebral facets and they were all lit up in the PET scan--MRI confirmed arthritis. And it's painful as hell. But I see a pain management doc and he's been awesome. But I am confronted by new limitations all the time. I took visited a friend last night and walked to her apartment as I have always done. Now 12 blocks is out of my walking range. I've been drugged all day today.
As Chrissy said, stage iv does kick off a whole lot of soul searching, but we've always lived with that uncertainty in our lives. We're just more aware of it than most people.
Warm hugs,
Susan0 -
Chrissy - I'm sorry to hear about your mom. Sending you hugs.
Once again there are quite a few of us in the club of having lost siblings to cancer. I'm another one that hopes my mom goes before me. She lost her oldest daughter to breast cancer so it was very painful letting her know when I was dx'ed at stage III and then again a few months ago when I moved to stage IV. She feels so guilty that she has the BRCA gene and passed it on to Sue and myself.
RangerMom - There was a definite difference when I was stage III and people told me that I looked good. It was like they really meant it and said it in a normal voice. Now, as more people are finding out that I'm stage IV, the tone has changed and the looks have changed. Those who are close to me treat me like they did before I had cancer. Back then they weren't feeling the need to tell me how I looked. But acquaintances just don't seem to know what to say. And for some reason they want to acknowledge that they know about my cancer. I'm not the type to make anyone uncomfortable so I just try to say "thanks" and move the conversation on to something else.
I have to say that the pain seems to be under control now. This morning I woke up early - probably from pain - and had an hour and a half before I could take my methadone. But I know have some liquid oxycodone for break-through pain and so I used it. Only takes 30 minutes to kick in. I didn't take full strength but it was enough to make me comfortable until it was time for the regular stuff.
I've also noticed that I walk with much better posture on regular pain meds. My back and hips feel normal so I don't limp or take short little steps. But I'm still limited on how far I can walk. Doing the major grocery shopping trip seems to be my limit. Sometimes I can make it through the entire store and sometimes I have to quit before we've gotten those last few items (like the ice cream!!).
Once again I've exceeded my minutes. Hope everyone is doing well!0 -
Sorry,dont know what ER n PR refer to.... They have 'officially ' placed me at stage IV feeling confident that the mass is cancer on my sternum. I dont have ANY pain there tho. Just my achy hips-thigh joints. I stay moving and have avoided pain meds at all costs. Figure that way they may help should i need them to.
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Krayz I was referring to the ER/PR receptors being either positive or negative as well as the Her2 being positive or negative. The type of treatment you are offered depends on what these are. It may be a good thing if when next speaking to your doc you ask the question and perhaps also ask for a copy of your pathology report.
Love n hugs. Chrissy0 -
Chrissy, my deepest sympathy to you for the loss of your mom ... so sorry.
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Chrissy, Very sorry for your loss.
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Hi ladies......I was reading another topic about xgeva vs. other biosphonate drugs and I am seeing my onc this week. I am currently on pamidronate (aredia) but it is a two hour infusion and I only get it once every 3 months. I have terrible veins and dread the infusions. The nurses hate me. So I might ask the doc about switching to xgeva. I was just wondering if you guys knew of any reason to stay on pamidronate vs. switching to xgeva? Do they do the same thing? A shot sounds so much better than an infusion.
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Xgeva is not a bisphosphonate but is a monoclonal antibody (who needs medical school, when breast cancer provides such a great education?) I took Pamidronate
monthly for the last year and have just switched to an every three month schedule. My monthly infusions took about 40-60 minutes and I used my port. Hope the every 3 month infusion is not two hours! Xgeva, like the bisphosphonates, exposes you to the risk of ONJ. A shot sure sounds easier but I think both drugs serve the same purpose. Hope you get to switch.
Caryn0 -
Thanks Caryn, obviously need to do my research! Yes, the infusions are two hours. Hate it, hate it, hate it. But not worth getting a port for something I get 4x a year.
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Agreed! I got my port in anticipation of chemo when it was thought I was IIB. Port installation resulted in lung puncture and while I was hospitalized for that, my bone met was discovered. Ended up not having chemo, so my port has only been used for Pamidronate, blood draws and PET scans. I love it for that reason but mostly I credit the chain of events that resulted from it's installation with early discovery of my bone met. My port and I are now best friends despite a rocky start.
Caryn0 -
Exbrnxgrl why did you not get any chemo? Not being nosy just wondering.
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Don't worry about being nosy (and you're not). It's fairly common for those who are ER+ and dx with stage IV initially ,especially limited bone mets, to try AI's as a first tx. Technically, I was IIB at first but they found my bone met before I was able to start tx for a lower stage.
Caryn0 -
Kay, I've been getting Xgeva shots since last March. Very easy and no SEs. Don't know anything as far as comparison to aredia.
Macy, I also went straight to tamoxifen. Like Caryn I was technically IIb for about two weeks when the bone mets were found. I also had a port installed. Unfortunately mine doesn't work for blood draws so it is pretty useless right now.
Sonya
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((((Chrissy))))
Love & hugs back to you, dear. I'm so sorry about your mama. What a way to start the new year. May the rest of 2013 be peace and joy for you.
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Caryn and Sonya I was also 1st dx at a stage 2, then before my chemo was to start my onc had a pet scan done and found mets to right hip. I am also er+, she decided to give me 12 weeks of taxol chemo and then zometa. I believe she said that I will not be taking tamoxfen . I don't understand how the onc decides who to give chemo to and who not to. I just want to make sure that I am getting the best care for me. I go for my 3rd taxol chemo on the 9th and I'll be sure to ask her. My dd who is a nurse will be visiting me at that time so maybe she can help me understand. Sometimes I feel I have trouble understanding things lately. Maybe I have chemo brain fog. Thanks ladies for listening.
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Macy,
There is no one right way to approach this. Different oncs have different opinions on which way to go ,chemo first or AI's first. The research I've seen doesn't conclusively point to one approach being better. I have been NED for 15 months on an AI and Aredia alone and my current feeling is to stay the course. That doesn't mean it's the right approach for everyone and I certainly have no objection to chemo. I won't hesitate to use it when it becomes necessary.
Caryn0 -
Macy......I know chemo is chosen as an initial treatment sometimes if the mets are posing a threat to an organ or important bone. My oncologist told me that with stages one, two, and three, the treatments are very standardized. But with stage four, you can ask 10 different docs what they would do with a particular patient, and get 10 different answers. Part of me likes that because I can influence and have a say in treatment decisions, and part of me hates the uncertainty. As long as your oncologist can justify his/her decisions in a way that makes sense to you, I would go with it. Hoping your chemo fog lifts soon!
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Thanks Caryn and Kayrnic for the info. I have another question, Where can I go on this site to find the abbreviations, some of them I can figure out but most I can't, like what is NED? sorry I'm fairly new and it seems possibly a lil mentally challenged :-)
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Macy NED means No Evidence of Disease. There is a thread called Discusion Board Abreviation Key and its in the very first thread listed under All Topics, sorry I can't do a link but I'm on my iPad and have not yet learned how to do them.......lol.......anyway, this particular thread has nearly all the Abreviations that you will see on these boards.
Love n hugs. Chrissy0 -
Thanks Chrissy, xoxox
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Chrissy, I haven't been on for awhile and I am so sorry to hear about your Mom. You seem to be my to go person. I have been doing well since I was switched to AROMASIN. I lost 20 lbs in Oct. from the nausea when I was on Arimidex. Onc. said it couldn't be from that, but I guess I proved him wrong. I have been doing well except for the all over body ache from my Thursday Zometa. One question. I carried a fairly heavy Christmas tree and picked up a few boxes last week and I have had a pain in my right rib area in the front (where I have mets) ever since. Can you have pain without progression? I am due for an MRI in a couple of weeks. I am a worrier. I have been using a heating pad and taking Motren. It doesn't bother me at night. Just when I move and turn. Thanks you Chrissy and to all the gals who contribute to this group. I will be changing oncs. after my MRI. Barb in FL
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