Bone Mets Thread
Comments
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Dee, Thanks for the suggestion. I have been using a cane since June. Weird thing about my (lack of) walking is it doesn't seem to be due to pain. Hey, my friend just had a hip replacement too and she is doing great! Hope yours is too.
Deanna, Missed you & your posts and glad you're back! Hope your travel was for fun and not medical.
LindaE, Hope you have some good news on your scan by now.
Welcome Solala and 3-16, sorry you are here but hope you will find some good information. Lots of wonderful people here.
Sorry for not mentioning everyone. There are just so many of us here! (And scrolling back, a few too many posts from me lately!)
Best to all
Jo
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My friend has just been dx with bone mets...........spine, rib, hip and shoulder.........she's 11 years out from initial dx and is scared stiff........... she's been suffering for over a year........at first they said it was arthritis......
What are the treatment options and what is the prognosis?
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Hi Happygran,
Sorry to hear of your friend's diagnosis, but you've come to the right place for good information. It's scary as hell when you're first diagnosed. The treatment will depend on a lot of factors, but typically some form of hormone therapy, maybe radiation for pain. There are a lot of folks who lead relatively long and happy lives with this crap disease.
Hugs to you and your friend,
Terre
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Hi Jobur and all,
Good news! Lungs and organs are clear. I'm so happy. Physical exam seems to indicate that axillary lymph node is smaller - more good news. Onc ordered another Ultrasound for lymph node to compare to August. Also a bone scan and xray of femur because of recurring pain. Hope you find a solution to your walking problem soon.
Freebird53 - Hope to hear from you soon. Let us know how you're doing.Wishing the best and hugs to all.
Linda
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Congrats, Linda!
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happy gran,
A lot will depend on your friends hormone status. ER- and/or HER2+ will be treated differently than those with other hormone profiles. Prognosis? That is for her onc to say, if indeed he says so at all. Bone mets can often be managed for long periods of time. Good luck to her.
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Hooray, Linda! I'm so happy for you!
happygran, if I could share one thing with your friend, it's that whatever pain and shock of being dx'd she's feeling right now can get better, once she gets on the right meds. A bone mets dx does not mean an inevitable downhill slide, as many of us, including me, believed when first dx'd. Your friend needs to have an oncologist who speaks in terms of managing her disease; one who uses words of hope and encouragement, because there are many promising new research findings. And absolutely ignore any stats you or she finds on-line, because those stats are based on women who were treated for Stage IV bc 5, 10, and more years ago, and there are so many newer things happening today that experienced bc oncs now view bone mets as a chronic condition. And please tell her to come here for emotional support from a great group of women who understand what she's going through. (((Hugs))) to you both, Deanna
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hi all, been busy and not on much! Dealing with my employer denying me ADA to work a reduced schedule!! Arrgghhhhh!! My question today is have any of you have multiple nodes involved? I as of August have only my sternum tumor which is necrotising from rads but I have nodes everywhere that lit up like a Xmas tree!! I am taking Aromasin and getting Falsodex shots, just worried because I can feel a lot of the nodes, creeps me out (clavicle, chest, arm pits) helppppp, lol. Thank you!!!
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Hello to all!
Deanna, welcome back, I was a little concerned when you weren't posting for a few days but glad to hear you were just spending some time away. I hope you enjoyed yourself!
Linda, doing a happy dance for you!
That is great news, I've been thinking of you all day and so relieved! I'm sure you will sleep well tonight.Happygran, sorry to hear of your friend's recent bone mets diagmosis. I am still fairly new to all of this but understand her feelings of shock and fear, especially after being so many years out from her initial diagnosis. As many here have said bone mets can be managed for a very long time. She will find a great deal of comfort and encouragement here.
Freebird53, please let us know you're ok and like Deanna said if there is anything we can do to help. We are here for you!
Hugs to all,
Annie
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LindaE, Yea! Happy you got good news!0 -
Deanna, Just noticed your post on the "Newly Diagnosed Stage IV Metastatic Breast Cancer", same as above. Just thought you might like to know you're not going crazy!Hi Terre, Got a big kick out of your being from the black hills area! Don't we just meet the most interesting people here in bc world? I love the black hills, one of the most beautiful places in the Midwest. Saw a picture of your view there in NZ on another thread somewhere, WOW!
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Thank you, jobur. Not sure if that misplaced post was due to multi tasking, chemobrain, or both, but thanks for spotting it and letting me know!
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Hi Kate. I understand your feelings about those nodes. I can see and feel mine too. It IS creepy, although it has become somewhat less creepy over time. I sure would like them to go away though. However, compared to some other places it could be, those bumps in the skin along the top of my foob and up toward the clavicle and the big ones along the clavicle are not so bad.
I'm pissed right now. And for my friends across the pond, that is not drunk, it is angry. Mom and I got up early and got dressed to go over to the other side of town to pick up the prescription for the pain meds that I am running out of. I was sure, even though they had not called me, that it would be ready. I had left the message with her secretary on Friday. She had all day yesterday to get to it. Fortunately, I called before I left. It's not there. Nor is there any explanation. And the doc won't be in until this afternoon (when I will be downtown at the social security office). This is the same way they treated me when I called them in August/September about the huge bumps that were appearing on me. I like my oncologist, but if her staff can't get messages to her, I think it might be time to change doctors. This really sucks. These people make me want to wring their necks. Grrrrr. Sorry for the vent, but again, thanks for permitting me. I think I shall lay down my head now.
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I have an appointment scheduled with another oncologist! I still haven't heard from my current one. Isn't that crazy? So, I'll get my bloodwork done and see her to say my goodbyes Dec 3. The following week I go to the other one. I was feeling so much like a victim, but after I made that appt with the new one I felt like I took back control of my healthcare. The new one will be a lady too. She better be better than my current one. Or I'll try another one LOL
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Good for you, Dune! What happened this a.m. should have never happened to any patient, least of all one dealing with mets. No one needs that kind of haphazard attitude from an onc's office, nor the frustration. Did you finally get your meds today?
Carla, I'm concerned about you. Please check in when you can and let us know if you got your power back and have heat.
Deanna
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Dunes,
Good for you for taking control like that! I chose my current mo in part because her pa was bright and with it! The one I saw first had a pa like yours, couldn't get a reply for days. Hope your new health team treats you right! Do I remember right, are you also having to fight for SSD? If so, did you have any success with that today?
Best to you,
Jo
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It's nice to be thought about...Thank You... I'm doing ok for today...It took me 3 days to be dug out from the snow storm we had...yes I was safe and comfortable...(warm)...I had so much snow on top of my canopy that my front door wouldn't open...(want a outdoor experience)...I survived...I am a strong woman...been in more hairy situations then this...
I had chemo today...they up my dose from 90 mg up to 115 mg of Taxol ....my counts are around 1.7 so OC said let's jump it up alittle...I showed him that my hair is grown back...and he said that shouldn't be happening..he said it could be due to the chemo may be to low to be working properly on my bone tumors ....I told him let's "jack" it up...I'm doing fine...I have slight pain in right hip/femur area...told him about that ...it's been getting more intense only at night...and da me...I only take my Morphine in am...(extended relief) ...i just don't like pills or opiates in my body...I'm a recovering addict for 20 yrs...but pills were not my drug of choice...so i feel all right with this decision...So start taking them 2x daily...8 & 8....we'll see how that goes...I 'm pretty active otherwise...always have been a very independent woman...even when I was raising my 3 children on my own...I was taught great survival skills ....I have to have a MRI on Monday OC is concerned with the active pain...so he is just checking me ...he is very good at that..because when I say something is different ...we're always hit with a surprise...like having the Bowel blockage in April...from side effects of the oral chemo....I got a infection from the diarrhea....ended up with a colostomy bag....
I never though I would have to deal with such a passive disease at this time in my life...I just had other plans...being a grandma to my 3 grandson's 2yr old, 8mth, & 7mth.....
I have my serious moments...I have connections and support...limited...but 80% of the time...I'm on my own...in this journey...I will always be grateful to all you ladies fighting this right along the side of me ...I wish we all lived close to see and have a pow wow...once a mth...just to have your human touch and and be around you face to face...human contact...i miss it so...and I don't mean sexually...that doesn't amuse me at this point... LOL...just friends...hanging out that know what I am going through and don't try to make me feel good cuz they don't know how to act...just act like you did before with me...but they choose to just stay away...Ok...so I've updated you lovely ladies...here is something I want all of you to remember:
A Strong Woman Is one who feels deeply and loves fiercely.
Her tears flow just as abundantly as her laughter
A Strong Woman is both soft and powerful.
She is both practical and spiritual
A Strong Woman in her essence
Is a gift to all the world~~I love you all L&R
Peace Out!
Carla
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Welcome back Freebird53! Missed you.Linda
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This is who I am "Freebird"
I am a woman of many talents, and the guardian of my children.
I have the strength of my God, to lead me through whatever Life has in store for me.
I shall look ahead, rather than be pulled back to past sorrows or mistakes, for only by moving forward can I begin anew. I will pray for those I love, that my love may be their blessings, that my prayers will be their strength.
I will love myself, because my Father in heaven loves me even more.
I will sleep peaceful, knowing I have done my best, and no longer burden myself with thoughts of unworthiness, or worry about what other people think...because all that matters is my family.
Prior to 2010 breast cancer dx ...I felt beautiful...sexy...courageous...loving...outgoing...strong...
now...I am insecure...my torso is scared... from left breast removed...sever radiation damage....colostomy bag hanging from lower waist...bald and lost over 65 lbs...
I hope you all understand that I'm not feeling sorry for my self I just want all I had back......
I hope that I can freely talk about what is going on with me at this moment on here...because it does help greatly for me...Carla
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I didn't get my medicine. I expect I'll have to rely on the short acting pills. Hopefully I have enough of those if I stretch them out. This is what happened when I called about the lumps showing up, spreading up along my collar bone, while my arm blew up to an elephant arm. The onc claimed she never got the messages. The receptionist called me paranoid. I told the doctor all about this. You'd think they would be fired or at least change their attitude. This doctor hugged me and told me we would go through this together. It feels like a major loss. Sorry to be a poop. I'll have to look around for my big girl panties.
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Carla, you look beautiful, both before and after ; and you have a beautiful spirit. Thanks to all of you for sharing your stories, your ups, and your downs.
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Oh yes, and the SSI stuff is all done. Dec 10 I get my first disability check. Yay.
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Dunesleeper:....Yay!!!! Good things come to those who wait....Thanks for the support....Right On!!
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Carla,Glad you are dug out from your snowstorm and doing okay! It sounds like you have been through a whole lot of shit and are still going strong, so if it helps you to vent here, rave on! Glad to hear too that you have at least some support in the real world. Those 3 grands have got to be great little motivators for you and you seem to have a good doc in your corner who you trust and can count on to listen to you. I know what you mean about wanting to have back all that you have lost. I have not been through as much difficulty as you, but I feel the same way, I wish I could have my old boring life back.
Jo
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Thank You Jo! This disease becomes a lonely disease...for some...Not everyone can support and be there for ya...cuz of there own fears. I am still working on my fears.... going on a year now with symptoms and finding out that I had Stage IV METS...with disease April....when treatment started...symptoms starting in Nov prior....I have been on IV chemo since June...just wonder how long it will help my bone mets....time will tell...and then will see what my OC has for me next...to prolong my life and live that much closer to watch my grand boys become men....
Good nite...had treatment today...probably won't get to sleep till early morning...the steroids they gave me always keep me up the nite of treatment...was up until 5:30am last week...
Carla
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Welcome back, Carla. Glad you're ok. And you look beautiful to me! As a very strong independent woman (too independent some would say), I totally hear you. So damn hard to feel debilitated. I only lost 2/3 of my left boob. So it's name is Frankenboob. The other boob was "normal boob" but now it's "droopy boob" (let's hear it for menopause!). Feel free to vent any time - that's what friends are for - you can vent and they don't judge you. Carla, it is a lonely disease, and it is because of other people's fears. I've been lucky in that I do have a few friends who will listen, but most of them want that just hear me tell them I'm ok. So these discussion boards have been wonderful.
Dune - glad you're firing your oncologist. I've fired two so far. It was such a relief both times and definitely the right move. And you're so right - if the new one doesn't work out, find someone else! And Dune - loved your acknowledgement to those of us Down Under...where "pissed" means drunk. However, being American, I still use it in the "pissed off" sense of the word(s).
I'm tired, burned out, and stressed. Gotta love the Christmas season in consulting in New Zealand. For those of you not in NZ, and especially those in the US, it's hard to wrap your head around, but basically, New Zealand shuts down for a month. Starts Christmas week or thereabouts, and people wander back to work in mid to late January (or mid to late February). Public offices are shut for two or three weeks (honest), restaurants close up, etc. Anyway, the irony of this is that everyone wants their reports done before Christmas. So the report can sit on their desk for a month. And it's always insanity. And I have a crap client who's trying to stiff us out of some big money on a project while demanding that we finish his report (which he probably won't pay us for) three weeks ahead of schedule. And I have about 8 other deadlines which are due (or overdue). And my husband and I are supposed to go to an astrophotography camp this weekend, but for the fourth weekend in a row, mine will likely be spent mostly working and he'll be pissy about it (not the drunk kind, the grumpy kind). And I'm just chronically fatigued, so working 12 hours a day 7 days a week isn't doing me much good. So that's my rant for the day. This too shall pass and at least I feel pretty good except for the fatigue.
Anyway..off to bed so I can start the joyous work day early tomorrow.
Hugs to all,
Terre
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Oh Terre, I urge you to blow off what is too much too handle. It is sooo important to eliminate stress as much as possible. I swear it is what made my cancer ckmd back. It's the one thing I couldn't seem to get under control. I can't help but think that if I had made more of an effort to learn relaxation techniques and use them that the cancer would not have come back. I need to follow my own advice. But good luck with getting your projects done. I hope you'll be able to shut down for a month with everyone else in NZ.
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Terre, Dune took the words right out of my mouth. That much stress -- even with the ability to rant about it here -- cannot be good for you. I, too, firmly believe my recurrence was triggered by the stress of a flood that severely damaged our home. Not that it may not have happened eventually, because in my case, I know there's a strong genetic component, reconfirmed again when a cousin's 24-year old daughter was recently dx'd. But stress and the chemicals it produces really does change our body's host environment. We all absolutely have to put our health first and rid our lives of stressful clients and situations as much as possible! I hope you will make the time to counterbalance the work stress you're dealing with this month!
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Hello everyone,
Terre I'd have to agree with Dune and Deanna, please try to take it a little easier, all that stress can't be good. I have not dealt well with some of the stressors in my life and often wonder if it has contributed to my illnesses, I'm sure it has and I often think if I knew then what I know now I would have handled things differently. Just find some balance and time for yourself. We all want the best for you!
Well winter has reared its ugly head here and we're getting a good dumping of snow. That adds a little stress to all my upcoming appointments at the Cancer Centre which is just over an hour drive from our home. The hospital called yesterday and I need to be there tomorrow morning for 9:30 to get the measurements and mold made for my radiation. Feeling a little nervous about the whole thing but happy to be having these mets zapped, feeling like I'm taking some sort of control over the cancer.
Carla, I saw your post yesterday, I love what you wrote and your pictures were absolutely beautiful! Glad to hear you are ok, we were all concerned.
Hope everyone is having a good day,
Hugs, Annie
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Hello,
Sorry to abruptly bump in again. I was here a few days ago asking whether we're safe with the treatment and having low tumormarkers. I guess my unconscious inner fear was leading me towards this question. I just heard by phone from my onc that the results of the MRI are not good... after the leg/knee (femur-tibia-fibula) it's in my pelvis. A petscan is now being set up to see if other area's are attained. Crap. Don't know what to feel or think actually. If his treatment is not working, what happens then?
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