Bone Mets Thread
Comments
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Hello Ladies,
I have been lurking for a week or two, looks like this is a good time to say hi and introduce myself.
Learned I had breast cancer in June. July brought surgery and initially was told (by my surgeon) that I was stage 2. 1st meeting with my oncologist and that was updated to stage 3 due to a 4th positive lymph node with a teeny weeny micro spot. A week of scans and subsequent bone biopsy quickly changed that to stage 4 with bone mets throughout my spine and pelvis.
I just started my 2nd month of Arimidex. Have not had any other treatment besides surgery. Lucky me?
Hoping for some words of wisdom from you gals as to how to live with this.
Best regards~
Jo
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Hi Jo and welcome to BCO and this thread. Your dx is still relatively new so I know your head is still is a load of turmoil........don't worry, that's quite normal and will settle but will take a while. Learning to live with a stage IV dx is not an easy thing to do so the best advice I can give you and anyone else reading is to live one day at a time........take that day as you find it and deal with what happens on that day. You didn't ask to get BC, you did nothing to make it Stage IV so be gentle with yourself and try to find the joy that is lurking all around you.
If you are having loads of trouble doing this and find that you are super anxious regarding all of this, don't be afraid to ask your doc about some anti anxiety meds and or anti depressants.......sometimes we all need a little help. Coming here to share how you are feeling, venting to get rid of anger or just wanting to talk is a good way to help you through and there is some one around most of the time.
Love n hugs. Chrissy
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I just want to share my great news one more time. After 3 years since being diagnosed and being on Abraxane twice, I am NED. June scan was NED and this one is NED. I'm feeling great particularly now with the faxed report in my hand. I'm feeling great, as well as I can with my little arthritis pains and a little too much weight will allow, but that's just life. Yeah!
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So sorry to have to welcome you here, Jo, but this is a wonderful group of women offering an abundance of support!
As tough as it must have been to be re-staged twice (I had it happen once and was a basket case!), it's probably a blessing that they didn't discover your bone mets until after surgery, so that much of your bc was removed and you didn't have to do early-stage chemo either.
Glad you've stopped lurking and have joined us! (((Hugs))) Deanna
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Yay Alexgram!!! Oh what a feeling to be pronounced NED twice in succession!!!! Woohoo!!! Happy dancing for you!!!
Love n hugs. Chrissy
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Best news ever, Alexgram!!! So happy for you!!!
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Great news Alexgram! Congrats!
Welcome to the thread, Jo. Sorry you're joining the club but happy you found us. You'll find some great support here. There is life with Stage IV - and good quality of life. Just takes some time to get your head and heart wrapped around it.
Hugs to all,
Terre
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Hello,
I am new to this thread too.
Jo I went through a similar experience as you this past March. I was first diagnosed as a stage I and told I would be "cured". We were scheduling surgery and the dr ordered a PET and Bone Scan. I went from stage I to stage IV (mets in ribs and spine) in a week and everything changed. We decided to not go ahead with surgery and instead immediately start hormone treatment. I am currently NED.
I remember everything being completely nuts but eventually when I was able to settle down, I was able to figure out how I planned on living my life. Although there are times when I am so very scared, I have for the most part forced myself to try to live as normally as possible. It has helped me so much reading the stories of other women diagnosed stage IV and doing very well.
Renee
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Hi Renee and welcome to you as well. It's sad to see new girls joining but good that you found both BCO and this thread. There are lots of supportive women here.
Love n hugs. Chrissy
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Hi to all the New Girls!!! Congratulation Alexgram!!! Ned and I have been two-stepping for a year and 2 months.
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Welcome, Renee. Glad you're doing the "live normally" thing. That's pretty much what I do too. Not that I don't get totally scared, depressed, self-pitying, etc....I certainly have my moments!
Went to the MO today and he confirmed "no active spots whatsoever". I knew this from the GP's nurse reading me the scan results, but always nice to have confirmation. Am going to switch to another arthritis med and see how that goes. If it's not better in six weeks, I'll see the MO again and we'll talk about switching from Femara to something else. As Femara is keeping me stable, I'm hoping this new med works. Fingers crossed!
Hugs to all,
Terre
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Hi all....I've been stalking all the threads lately - just reading and no posting. KiwiCat - SO happy for you! I love that kind of relief and so glad that you are feeling it! Congratulations.
It's been raining, raining, raining here in Denver and that kind of weather always makes my bones ache.....does that happen to anyone else? I know I didn't feel this way before being diagnosed....I wonder if it's a side effect of the medication I am on or if I have chemo induced arthritis. Is there such a thing? Whatever it is, I can barely roll in bed, let alone get out.
Hope everyone else is doing well!
XOXO
Andi
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Chrissy, Deanna, and Terre,
Thank you for the warm welcome.
Chrissy, I know that is great advice, just to live each day as it comes. Hard to do some days, I tend to get way ahead of myself. Just about the time I think I have come to terms with my dx, I turn around and have what I call a crybaby day where anything and everything has me in tears. Guess that is part of living each day. They are not all going to be good ones.
Yes Deanna, I am glad that my tumor was removed before finding out I had mets and so very thankful the mets were found before starting chemo and rads. My heart goes out to most on this thread who have been through such difficult treatments.
Terre, Alexgram, and Macyhen, how wonderful that you are NED! So happy for you all and your news gives me some much needed hope!
Renee, a special hello to you as our dx are so similar. July was my whirlwind month. Surgery, doctors appointments, scans, and bone biopsy, no wonder I was such a mess. It's great to hear you are NED too. How are the side effects of Femera? So far, the sides on Arimidex are not too bad. Mainly increased hot flashes and joint pain, and I already had both of those before.
Andi, hope the sun comes out in Colorado today and you feel better!
Hugs to all,
Jo
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jobur,
Please send the rain to us, in drought stricken CA! I had my single bone met discovered by accident after my bmx. Three years later (rads to femur) I am still NED. I switched to Femara three months ago but was on Arimidex before that. My se's got progressively worse but, so far, Femara seems ok. Take care.
Caryn
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hi ladies, it's been a while since I have signed on!! Been busy, which is good
ok, I am currently on Aromasin and Folsodex shots. My PET scan was ok, my sternum tumor is NED and no other tumors on any bones or organ however my nodes are all lit up. Clavicle, chest, under arms and near heart. Dr said about double as many as January. My question is this; has anyone else has multiple node involvement ?? He started the Folsodex as kind of a double hit. Said too early to tell if Aromasin didn't really work, was only on it for 3 months prior to scan. Just curious what y'all thought. Thank you! )0 -
Hi Kate. I have a boat load of node involvement but my DX and tx is way too early to give you any info.
I came to complain that the worst thing about cancer pain is the constant reminder it is cancer pain.
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Edie, I noticed you are from Jacksonville, Fl. I go there to the Proton Center at U of Fl Shands. I HIGHLY encourage you to select them if you need radiation of any kind...carolyn from Music City
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Hey Jo,
I went through the same trauma in Dec 13. that is they thought it was stage one then two oh whee it became IV before I knew it.
Our thoughts are with you as you go through the first few weeks of adjustment...As was told to me...things get better when there is a stable plan. You wlll find better days. Carolyn from Music City
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Totally agree, Dune. That's why I love my MO; he gets it - and said much the same to me - "every pain is a reminder that you have cancer." However, mine is apparently arthritis.
Of course, the Femara makes the arthritis worse, so that's a reminder. But I'm realising that I need to get past the thinking that every pain is the cancer. Easier said than done. Hang in there!0 -
Hi all, i joined this site 2 years ago when I was diagnosed with triple negative breast cancer - it was a great source of help and inspiration and hope for me. I'm back, in May this year I was diagnosed with a single large met in my sternum, so here I am among Stage IV sisters hoping for some guidance. My oncologist wants me to get a radical sternectomy followed by radiation. has anyone here had a sternectomy or know anyone who has. It's major surgery and I'm trying to understand more about the long term effects.
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Hi Marina,
I am very sorry to hear about your diagnosis. I don't know anything about a sternectomy, but a quick google search turned up a couple of entries that might be of interest to you if you haven't found them already.
https://community.breastcancer.org/forum/106/topic...
http://sternectomysupport.webs.com/
It does sound like very major and consequential surgery, so maybe a 2nd opinion would be good to have before going forward?
Best to you,
Jo
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Hi Carolyn,
Thank you for your kind words. I am feeling better already a month and a half in. Seems like the lower back pain has decreased and I am able to walk a little better some days. Hubs and I had always been big on going for walks, but sometime this spring my ability to walk declined to the point I am now hobbling around the house with a cane. Still don't really know if this is from the bone mets, chronic knee problems or both, but being unable to walk was almost as big a hit to my mental state as the cancer dx.
I am sorry you had to go through a similar experience last December. From what I have read only 6-10% of women are initially dx'd as stage 4, so it helps to "meet" others with the same experience. I just keep wondering how this could have happened as I was having mammograms every 6 months. Doesn't matter now of course, we are all in the same boat regardless. Just one of those recurrent thoughts I need to let go of.
Yikes, now I am babbling when I only meant to say hi and thanks!
Hope you are having a good Saturday morning in the music city.
Jo
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Hello ladies. It's a gloomy Sunday here in Maryland. I did a bit of light weight lifting exercises and hope to get up on the bike for at least 20 minutes. That seems to be all I can handle anymore. I was doing a minimum of half an hour before I found out I was stage iv. At that point I pretty much just stopped everything. Besides the depression there was pain that I now knew was cancer (that makes the pain different somehow), and the wrapping of my arm. It gets all sweaty. However I am trying to get back to my life, such as it is. I stopped taking the pain meds. There will likely come a time when I really need them. I don't think I do right now.
My hearing date for SSDI is Oct 1. I think my lawyer is worried -- and angry -- that I will be awarded it based on when I was diagnosed stage iv. That would mean we won't get the 2.5 years retroactive money, which means she doesn't get paid much. I guess she shouldn't have dragged it out then. I went through so much stress that could have been alleviated with that additional income, but she didn't think that was important enough then. I don't care too much about the retroactive pay. It would enable my mom and me to take a special vacation for her upcoming 80th birthday as we had planned. The lawyer was really harsh with me, and as a result I spent the rest of that day and the next in bed. She won't get to me next time because I simply don't care.
How was that rant? Pretty good, eh?
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Dune, that was a great rant and it sounds like a well deserved one as well. I hope everything goes well for you on Oct. 1st so you can get to go on that lovely vacation. Good for you for not letting that lawyer get to you again! Strength to you sister!!!
Love n hugs. Chrissy
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hey Jo,
I take Lupron, Letrozole, and Xgevia. The side effects are ok but slowly getting worse. The hot flashes are intense and I'm starting to develope joint pain in my fingers and hips. I find that excercise (I am an avid runner and love yoga) help with the joint pain. I may start taking Effexor for the hot flashes and I just added meletonin to my supplement regime to help me sleep at night.
It's kinda wierd to think this way but I was kind of relieved at the quick stage IV diagnosis after awhile because I was able to avoid treatments I didn't want such as surgery. That may be a completely disfunctional way to think about it but it has helped me deal with the situation. Especially after meeting to many people who started out as I, went through tons of treatment and ended up at IV anyway. In a bizzare way I feel fortunate that I was just at the four so quick. I'm sorry if that seems insensitive or is upsetting but it was just the way I cope.
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Rseman, that actually makes a lot of sense.
Chrissy, thanks sister!
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Great rant, Dune...you go girl. Don't let the nasty lawyer get you down and good luck on Oct 1.
Rseman - Agree with Dune - makes sense to me. And anything that helps us cope is a good thing, in my opinion. I have the hip and hand joint pain from Letrozole too; not fun. I find when I sit too long, I really hurt when I get up. So I try to make sure I get up at least once an hour at work and walk around.
Welcome, Marina. Glad you found us, sorry about your dx.
Jo - glad you're feeling better.
Hugs to all,
Terre
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Terre, same thing here! I'm on my feet a lot for work so that is helpful. Getting up from a sit can be soooo painful but it goes away shortly with movement. My MO told me that the medicine isn't causing any damage such as arthritis but it is just the sensation of pain that is the side effect.
Dune-I am so sorry you had that experience with your lawyer. It made me angry just reading it. Is there anyway you can find a different lawyer? No one should ever be treated that way.
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I'm new at this stage IV stuff -- today I was moving furniture (being careful!) and vacuuming -- and now suddenly my right hip is hurting pretty badly. I can barely walk. And when I do, it hurts so much to change direction that I just stand there for awhile and get my courage up. I'm afraid to try stairs. I have extensive bone and bone marrow mets -- including in the hip. So here's the question. It's a weekend. When do I call the doctor? Are there any risks to just waiting until Monday and seeing how it goes? It seems intense pain is a pretty normal event. I'm not in pain when I lay down or sit in the right position. I have taken 4 ibufrofen!
Usually I swim 1.5 miles a day -- I went hiking last night. So I'm not used to pain and I'm not quite sure what it means or is any immediate action is required.
Thanks -
Suzy
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Hi Suzy. I have a feeling that if you call your doctor, he/she will encourage you to go to an ER or other immediate care type place that can take xrays. You might also be able to get something for the pain there. I think it comes down to using your own best judgment. If you even suspect a hairline fracture, I'd get help.
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