Bone Mets Thread
Comments
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Thanks Linda. The pain is decreased. It gets itchy now and then, but it is still numb. CT scheduled for Tuesday. I definitely feel better than last night and this morning. My mood is better. I'm feeling less afraid and more accepting.
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Hi Dune - thanks for the update. I've been worried about you. Glad they're doing a CT scan; sorry you have to wait until Tuesday. But glad it's feeling better. Sending good thoughts your way...
Hugs,
Terre
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Hey Dune, I hope the scan on Tuesday brings you much needed answers but glad you're feeling a bit better. I worked in dentistry for 23 years before I had to stop and there can be many reasons for the pain you're describing. Hoping you feel better each day!
Hugs, Annie
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Hi ladies....I'm 39 with bone mets. I stumbled across this site and was so relieved to see I wasn't the only one complaining of jaw pain. my onc kept saying it was TMJ but I pushed for a pet scan...scan showed nothing. I know my body and as a nurse I have ran across enough TMJ patients to know that was not what I had. I finally gave up on my onc and went to the emergency room because I was having 8 out of 10 pain and refused to leave until I got answers. They finally did a bone scan and found I had ONJ probably from my zometa. It's sad I had to jump thru hoops to get answers and was treated more like a nuisance than a concerned patient.
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VegasNurse, welcome and so sorry to hear of your ONJ diagnosis. I am praying that you are getting some help with it. What an awful side effect with a drug that helps us in so many other ways. I myself am terrified of it. Sometimes after an infusion I swear my mouth just aches and my teeth hurt but then it passes. Seeing the dentist on Tuesday so I will mention it. Did you have any dental work done before this happened? Best of luck to you and hope they get it under control.
Hugs to all, Annie
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I didn't have any dental work. I did have a patient come into the ER who was hostile and I got kicked in the jaw. They are thinking that was what sprung the issue. Luckily we caught it at its early stages. We are treating with antibiotics which has made a significant difference. It's just amazing the drugs that are suppose to help us can be what ultimately what causes the most side effects and damages
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Good morning all,Vegasnurse - Welcome, but sorry you had to join us. Sure hope you get that ONJ under control soon.
Annie - I have my infusion on Tuesday and already dread the post-tx pain. The Aredia dosage is reduced this time because of my kidneys - hope the lower dosage will be kinder with pain.
Dune - thinking of you this am and hoping you're feeling better.
It's -36 celcius with wind factor this a.m. Can't wait to see my heating bill - this cold just does not stop.
Off to my ortho today for follow up on lumbar scan. Radiologist's report indicate arthritis so not worried.
Wishing a good day to all of us,
Linda
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If one of these drugs does this, does it mean all of them will.
VegasNurse, I'm glad you finally got it resolved. How awful that we have to go through all that when these doctors are supposed to be working for us and we know our bodies.
I hope the CT scan shows the doctors what is going on. It is still numb and painful but I can tolerate it.
Linda, that's cold. Well I don't know celcius much, but it sounds cold. We're getting a 4 degree fahrenheit night. That is too cold. My tolerance stops at 20. LOL
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Thank gawd someone ordered that CT. If it's getting a little better instead of worse, I'd think that's good news. Sorry it still hurts.
Unfortunately, yes, all those drugs have the potential. Oral or IV.
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The drugs are also very hard on the kidneys - I'm starting to have kidney problems. You just never win.
Linda
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VegasNurse - Welcome! I'm a Las Vegas refugee living in New Zealand. Lived in Vegas off and on from 1979 until 2008. Still have lots of friends there. And I also have ONJ. It HURTS!!! I mentioned this earlier, but I have a standing prescription for antibiotics because I travel a lot and work about an hour from home (which is where my GP is), so if I'm developing problems, I can start the antibiotics immediately. I am so sorry you have it; not much fun at all. Sorry you're joining us but happy you're here (if that makes any sense).
Linda - so sorry to hear about kidney problems. Hope things are kinder and gentler for you this time around.
Dune - glad you're feeling better and getting a scan. -36C = -32F. Damn cold in any event.
We're off to do some shopping. It's Valentine's Day here (happy day to everyone)! I saw this on another board and had to post it, especially since I know we're headed to Mitre 10 (like Home Depot):
I'm driving to Auckland tomorrow (about 8 hours with the way I drive it because I stop and play along the way). I'll be there all week; driving home Friday. So I may not be able to keep up with the discussions here as much as I'd like.
Hugs to all,
Terre
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VegasNurse, I'm glad you pushed until you got a diagnosis and treatment. I have ONJ, and I guess it is very uncommon, because I had a hard time convincing my doctors that I had it. I worked in dentistry my whole career, and insisted on seeing an oral surgeon. He had only seen a couple of cases in his years of practice. I was treated with antibiotics for a month, and had to stop the Zometa. My bone exposure is still there, but there is no pain. What did you get for treatment? Is it better or gone?
I hope we both get healing, and lack of pain.
Birdlady
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VegasNurse, that's awful that you had to get ONJ because of being kicked in the jaw at work but I guess that makes sense, it is trauma to the jaw. So sorry this happened to you. Praying you'll be on the mend real soon.
Dune, I'm pretty sure all of the ones used for bone metastasis carry that as a potential side effect. It's too bad cuz it really does help our bones. My MO is looking at changing mine to every 2nd month. Hope you're having a better day today.
Linda, I hope this infusion is gentle on you! And omg we have to worry about our kidneys too. When I had my CT scan on Wednesday she said my kidney function was good because they have to check it before they can inject the dye. I've only been on pamidronate for 6 months though so that scares me a little too. Didn't feel too great after my last one for some reason. And yes it's Siberian cold here too 😟. I need Spring! Let us know how you make out on Tuesday, best of luck to you.
Terre, lmao at that picture. A little sexual innuendo there you think? Enjoy your time away!
Hugs to all, Annie
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Annie - I have a scan on the 19th with contrast. Because of the kidneys, I have to take a "potion" for hydration (it's called Mucomist) and I also have to drink chicken broth the night and morning before the scan. But the good news is, I got my blood work done yesterday, and kidneys are OK this month and so is my calcium level. TMs are stable. So can't ask for anything better.Ortho appt went well, he confirmed arthritis. I asked him if Dr. Incompent (radiologist) was still around. Yes, he is! But he is now restricted to reading Xrays only. No more scans, ultrasounds, mammos, MRIs, etc. IMO, he can still do damage. Go figure.
Linda
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Linda, I'll be thinking of you on the 19th and sending positive thoughts your way! Yay to all the good news, keep it up! So happy your kidneys are ok and tm's are stable ☺. Enjoy the weekend.
Hugs, Annie
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Just popping in to wish everyone a happy and pain-free weekend, and to add my welcome to VegasNurse.
Linda, glad your bloodwork is good and TMs are stable! YaY!
Dune, hope your jaw pain is better today. I get so upset hearing about disappointing and/or frustrating docs and medical offices, and you've certainly had more than your share of them!
I had company this past week so haven't been on here except for quick peeks to try to stay a bit in touch with what's going on. But I'm kind of shocked at how many of you have had OMJ to one degree or another. I thought it was suppose to be much more rare than apparently it is, at least amongst this group. Other than that, my company and busy week totally wore me out and kicked my pain level up several notches. I guess I've gotten use to being more sedentary than I realized, and I was surprised at how much more my body ached after trying to run around and act normal. One night after two days of a lot of driving, then spending six hours tromping around at a humongous outdoor shopping mall, I thought I was having an out-of-body experience -- I was that overly exhausted. I guess the trick is to find the balance, which clearly I haven't in recent days. (((Hugs))) and Happy Valentine's Day! Deanna
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MammaRay, not changing the original stage and adding "with mets" is technically correct. However, since the BCO boards are set up the way they are, those of us with mets -- whether that was from the get-go or it happened later -- are all considered Stage IV, which is also an accepted way to describe our advanced bc. As far as what to look up, I don't think you'll find any conflicting information between "Stage II with mets" and "Stage IV" or simply "metastatic breast cancer."
Now a word of caution about Dr. Google and Stage IV/ Long term survival stats include women treated 5, 10, 15, or even 20 years ago, so are outdated in terms of the more advanced and targeted drugs most of us have received within recent years. Plus, none of us are statistics. We are all individuals. I'm throwing this out because you may come across some depressing stuff that I personally think is worthless information. (((Hugs))), and I would write more but my hubby is making dinner and is letting me know it's ready. Deanna
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Hi everybody & welcome to everyone new here. Sorry you have found yourself here, but it's a good place & we all help each other as much as we can.
Our little holiday to the big city was good, we really enjoyed visiting with our friends, doing some shopping & way too much eating & drinking but it was all fun & we all need a bit more fun in our lives.
The weather in Victoria is unbelievable, the cherry blossoms are blooming on all the trees (sorry, Linda, I know it's so cold where you are) We couldn't believe all the daffodils & primulas out. We walked everywhere & so I am so tired now, but I will get back to normal soon.
My onco appt went quite well, tho the scans still aren't giving us an accurate picture of what's going on, but she feels that I am quite stable & that most of my mets are healing. My TM's are down to 11.8, they have been steadily going down since June so she feels that is a good indication of the anastrozole working. She is going to book another bone scan for May hoping that it will show "stable" She was going to book another CT but I told her I was getting worried about the amount of radiation & she agreed.
So I'm going to make DH a nice dinner tomorrow because then on Sunday I have to do my prep for a colonoscopy. Apparently having stage IV cancer doesn't get you out of this... trust me, I asked!! LOL! Hugs to all, Dee
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Yes, leggo, thank gawd. It probably would have been ordered by the oral surgeon I was referred to, but fortunately my oncologist decided to take me serious and ordered the CT. It's still numb and painful (had to take an extra oxycontin both yesterday and today) but I think it is much more tolerable because I'm less panicked. I guess this will open up some interesting treatment complications. We'll see. Thank you all for the support and helpful information that you shared.
Linda, what do you mean by kidney problems? Are you ok? I wonder what steps we can take to help prevent kidney problems. I guess the best thing is water, drinking lots of water.
Happy Valentine's Day back at you Terre. We will miss you, but have a good time.Linda I'm so glad your bloodwork came out so well, showing good balance in your body. I like the fact that Dr. Incompetent got demoted to xrays only. Maybe he will study harder and become a better radiologist as a result of this.
Deanna, sorry to learn about your out of body experience and increased pain level. That night I spent with my friend at a casino last weekend did me in. I still hadn't recovered when this jaw thing kicked in, so I've been in bed pretty much all week. I know I have to do some walking (about 3 miles a day) or other form of exercise. I'll start by trying to get up early enough to get to a 9 am yoga class tomorrow. It's not exercise, but it gets me out of the house. I know I need to try harder. Your post reminded me, so thanks. I hope you are feeling better now.
MammaRay, I thought that metastasis = stage iv. Everything I read said that was so.0 -
Dee, how is it that Victoria is getting such amazing weather when the rest of us are pretty much freezing. I hope you don't get a cold spell that messes up the cherry blossoms. I'd love to see a picture, hint hint.
You are too funny about the colonoscopy. Nope. There is no getting out of that. LOL.
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Sharon, Thanks for the feedback on Xgeva. I am still trying to get the "hang" of posting on the boards...would like to respond to a post earlier.....sigh. The jury is still out re any se from Xgeva. Still very fatigued and sleepy. My tx meds are Herceptin, Faslodex and Xgeva..so can't decide which is the culprit. Had routine heart Echo and bone scans yesterday.....good report on cardio with ejection fraction at 55. Sharon are you having similar sx with the Xgeva? Maybe it is the usual February "Cabin Fever" kicking in....high of 10 deg F today. Hope that your weekend brings lots of sunshine! Peggy
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mammaray,
Deanna is right about the nomenclature regarding stage IV or stage... with mets. It's all metastaic breast cancer:( As far as tx goes, it doesn't make any difference, as far as I know. You could call it mashed potatoes and it would still be MBC.
Dunesleeper,
It was sunny and 78 degrees when I left work today. Beautiful as it was, it worries me because this should be our rainy season and our drought conditions are worsening. Can you all ship some snow to the San Francisco Bay Area
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momonsna6,
When you reply to any post it becomes the newest post in that thread. There is no way to have your reply post directly after the post you're replying to (unless that post was the last one on the thread). You can, of course reference the post or quote the post in your reply
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Caryn, how much snow would you like? We have plenty to share. Just got home from a show at the Casino and another storm starting, blustery and -25. Visibility was poor and I'm wanting some of your weather. I would love a 78 degree day, but I'm sure the drought is a concern. I wish I could ship myself to the San Francisco Bay Area 😁.
Deanna, I felt exactly the way you described a couple of days ago when I had overdone things. I really just wanted to cry, I was overwhelmingly tired and it really struck me that I am not as strong as I used to be. I've pretty much had a crazy busy week so I'm a couch potato this weekend.
Dee, great to hear all is looking stable. Wish you could have gotten out of the colonoscopy but wish you the best!
Hugs to all, Annie
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I'm afraid I don't have any idea why this end of Canada isn't getting much in the way of winter. Up island further, where I am is certainly not getting cherry blossoms, but we have certainly been spared any winter type weather. I'm worried about lack of snow pack as well, our local ski mountain, Mt Washington just closed for the season because of no snow. Definitely seeing climate change happening. I would love some 78f weather!! Best we are here which is above normal is 13c or about 55f.
Count me in as one who doesn't know when it's time to quit. I just took some pain meds as my back is killing me, too much walking, too much of everything. My onco suggested that I take 1 tylenol & 1 Nsaid at the same time, I tried it tonight & seems to bring me relief quicker than just tylenol or T3's. -Dee
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Happy Valentine's day everyone!Welcome MammaRay.
Dee, congrats on stable and TMs going down. Colonoscopy? Lucky you! The preparation is so much fun...I've had a few myself - the fun part is when they inject the mild sedation, but doesn't last long enough.
Dune, finally your Onc decided on CT scan! Wishing you the best. Regarding kidneys: I have no symptoms whatsoever. Aredia/pamidronate puts a lot of strain on kidneys and my blood sometimes shows beginning of insufficient renal function, but nothing serious. Hence the lower Aredia dosage and hydration measures prior to dye injection for scans. The dye also puts a strain on kidneys. My Onc wants to be very careful. And I know I don't hydrate enough - definitely something I will do more. I started the infusions in Dec 2013. At dx I was told for a minimum of 2 years, but Onc adjusts as required.
Deanna - hope you get a chance to rest. I also have to pace myself and listen to my body.
It is still so cold - no break until Wednesday.
Hugs to all - Linda
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thank you ladies for welcoming me. It's nice to be apart of a support system that truly understands what I'm going through. Much love to u all. Thank you al
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The Angels list is a way to remember those who we came to know and care about on these thread, to honor their memory. Yes, it can be disheartening to read. Very sobering, a dose of reality.
What I want to add, though, is that while we experience the lowest of the lows on this forum, there are many of us who take the approach that we are Living with bc, not dying from it. You can still have a quality of life and some very satisfying experiences and moments in life while dealing with this disease.
With that in mind, I am including a link to an ongoing thread started almost a year ago by exbrnxgrl "Life does not end with a stage iv diagnosis". I encourage anyone seeking inspiration to read it or parts of it.
https://community.breastcancer.org/forum/8/topic/8...
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divine,
Thanks for referencing the thread I started. Stage IV bc comes in many varieties. Having stage IV changes the game forever and although many of our sisters face daily pain and struggles, some of us can and do live full lives. Yes, we do have to make some accommodations, deal with medication/tx se's , but for some of us, life can be and is surprisingly normal and fulfilling. Will it always be this way? No, odds are not in our favor but why not enjoy it while we can? And for my sisters who are struggling, my thoughts and prayers are with you.
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Oh yeah! We go through moments when we are more aware of our mortality, but most of the time we are just doing life: shopping, cooking, cleaning, spending time with family and friends, meeting each other, taking trips, paying bills, lol. I know there are more fun things in there, but I can't think of them -- not because of cancer, because of depression (which I had a long time before cancer). Oh yeah. I did yoga and an exercise class this morning at Hopewell, and that was fun.
Caryn, I hope you get rain. OMG! It will be horrible out there come summertime if you don't get every bit of water you can get.
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