Bone Mets Thread
Comments
-
good morning ladies. I am at mo's office fir scheduled visit. Ds2's b-day is tomorrow. He is having a sleepover tonite. Looks like a got a lot if errands to do to get ready for the party. Then home for a nap, so I'll be able to stay awake tonight.
Hugs to all
0 -
Such an active thread. Happy to hear you are doing better, Patty. Enjoy the party! Carla, so happy to hear you are doing better, too! I'm sorry to hear some are having progressions. Hope you find something that works soon!
I've been gaining weight too. Supposedly from the AI. But, maybe it's all the ice cream I ate on Pattys behalf! Either way, I take it as a sign that the AI is having intended effects!
Happy Mo Day all you Mothers! Looking forward to a glass of wine on the beach at sunset!
0 -
Patty, happy birthday to ds2. Have a great party. I'm so happy you are feeling better and will be able to enjoy it. I hope you have a great Mother's Day too, and that goes for all of you! I'm only a mom to my birds, but I am having a birthday: 58 on the 9th. Mom and I always share Mother's Day weekend. I'll post a picture of my birthday cake and maybe the forbidden salad too. Muahahaha.
Romansma I'm gaining weight too and am not happy about it. It's the steroids.
0 -
Happy Birthday to DS2, Patty! Boy, what a difference a few weeks make, and so happy to picture you doing b'day prep stuff today! Just please don't overdo it! You do not need a setback!
Hey, I have a question for those of you on Xgeva. I have been dragging my heels on starting this drug because of some ongoing dental stuff. But at this point, it's been a year or so, and while the worst is done (including a couple of extractions and a deep cleaning), I'm beginning to think I won't ever be over some of my dental issues. (Example: I have another tooth that may need to come out... trying to save it, no need to take action right now, but hygenist is still concerned about it... ) So my question is... Is it foolish to start Xgeva with this and and a couple other dental procedures (like maybe needing an implant) that involve the bone still a future potential? My oncologist said to get everything taken care of before starting, but that would mean possibly doing work that may not need to be done, or could be done too soon if I need another tooth out. I asked my dentist about this today, and his response was that if that type of work needs to be done in the future and I'm on or have been on Xgeva, "the risk can be managed." Is that correct?
Terre, how are you feeling? You sounded so miserable the last time you posted. Hoping things are looking up. Getting sick on top of having mbc is no fun because our immune systems just don't have enough fight to go around. Hope you've turned a corner! (((Hugs)))
Happy, happy Mother's Day to all, including the pet Moms. Afterall, they're our much loved babies, too! Deanna
0 -
Hi all,
Happy birthday Dune! And happy birthday to ds2, Patty! And Happy Mother's Day to all.
Deanna - I think I'm better, but still pretty miserable. Still have no voice. Planning on sleeping most of the day...need to grocery shop but otherwise sleep is the only item on the agenda. That and disposing of the bird Turbo just fetched for us while I was typing this. Ick. At least it was a sparrow and not anything endangered.
Hugs to all,
Terre
0 -
Hi everyone! I am new to this website and forum. My 62 year old mom was just diagnosed with triple negative metastatic breast cancer. She had a <2cm primary tumor (right breast at 7 o'clock) and 20 lymph nodes under her arm removed (only 3 were positive for cancer cells). The pathology report from the surgery indicated that lymph vascular invasion was present. Her cancer was considered grade 2 from the core biopsy report, but is now grade 3 from the surgery report. Since the surgery, she has had a CT scan & bone scan of her body (head CT upcoming).
The oncologist told us that a spot was found on her L4 pedicle that had a high uptake, which makes them suspect it's metastasized cancer from the breast. She has no physical symptoms of this (ie. no pain). Therefore, she has been diagnosed with Stage IV metastatic breast cancer - without treatment she has maybe 1 year, with treatment maybe 2-3 years as the cancer is extremely aggressive. The oncologist felt that it had been present for less than a year before it was caught.
My question is - how likely is it that the spot found in the CT/bone scan on her L4 pedicle is breast-to-bone cancer? My understanding is that bone mets don't usually show up for a good length of time from the initial diagnosis and breast cancer tends to invade the visceral organs first. And if the cancer is, in fact, that aggressive, shouldn't we expect to see more mets in more than one spot right now? Thank you in advance for your time.
0 -
Dlb823,
I think you will have more ONJ problems if you have any extractions while on Xgeva. Once you get ONJ, you will not be able to take XGEVA or Zometa. I would get all your teeth worked on b/4 going on the drug. I've had 5 years Zometa & 1 now with Xeva with no problems.
Terri
0 -
Sasha, I'm sorry about your Mom. Without knowing anything more than you've told us, my first bit of advice is run (don't walk) to another oncologist. Any onc who gives a woman an "expiration date," -- especially before even treating her! -- is not the one I would ever let treat me. In other words, his "prediction" speaks volumes about his own perception of his ability to help her. Get a second opinion, ideally with an expert in triple negative breast cancer (TNBC). There have been many advances in treating TNBC in recent years (primarily preadjuvant chemo), which make the stats her current doc(s) are going by outdated. To be so full of doom & gloom when your Mom appears to have only one metastatic spot that could be metastatic breast cancer, but that hasn't even been confirmed by biopsy, seems like a bit of a red flag to me. Are you in the US? If so, there are several major medical centers that have oncologists who not only specialize in breast cancer, but have a specific research interest in TNBC. MDAnderson, UCLA, etc. My first suggestion would be to start a new topic within the TNBC Forum (click on All Topics to upper left; scroll down until you see the Triple Negative Forum)... put your location in the headline... and ask for recommendations in your general area for an onc with true TNBC expertize. If you have to travel a few hours to find one, it would be worth it to get a second opinion. She can still choose be treated locally, following the expert recommendations.
Thanks for the input, Terri. I just just had the feeling from the slightly blank look in my dentist's eye when I asked him about it that he may not be as up on the potential issues w/Xgeva as I'd thought he was.
0 -
Hi DLB - Thanks for the response! There really isn't much more to tell. That is it. She is starting chemo either next week or the following week on Taxotere. We live in Alberta, Canada. We live near one of the highest touted cancer institutes in the world (so I have been told). We were referred right to the Cross Cancer Institute. I don't know that there is another oncologist to see? Apparently, this diagnosis/prognosis was decided during rounds - a team of oncologists, radiologists, nurses, etc. I don't know how/where we would get a second opinion?
0 -
Sasha, hopefully some of the Canadian gals here will weigh in. Short of venturing into the US, I'm sorry, but I have no idea of how to get a second opinion in Canada. But even recognizing that there may be some cultural differences in the way a serious dx is shared in Canada vs. the US, I still think giving your Mom a life expectancy prediction before she even begins treatment is way off base, especially when women with TNBC are living far longer now than the did up until just a few years ago, as you will see if you and your Mom venture into the TNBC forum. (((Hugs))) to you both. Deanna
0 -
Hi Sasha. I don't post here often but I do follow the thread so I read yours. Things are a bit different in Canada as you've probably already determined by reading these forums. My mets diagnosis initially presented in my sternum. Although I'm not hormone/her2 negative, it was considered very aggressive (grade 3/her2+). To answer your first question, no, there would not necessarily be more than what was found on your mom's scan. The met to my sternum was the only one found at the time and it stayed that way for almost another two years. I think the oncologist wasn't actually trying to time-stamp your mother's life, just giving information based on statistics. I heard the same speech. As for the second opinion, our Canadian Cancer clinics usually operate virtually the same province to province. One of the benefits is that you have an entire team of oncologists reviewing your case on a regular basis, as opposed to one oncologist's own opinion. In a way, you've probably already had that second opinion when all (or most) of the oncs at the Cross Centre initially reviewed your mother's case. That's not to say you can't go for a second opinion elsewhere...though it's going to cost you...and chances are you're going to get the same information you already have. I went so far as to gather all my records (that cost as well) and went to Germany for a second opinion, only to find out they recommended the same treatment. As far as a second opinion in Canada, I can almost guarantee the recommended treatment would be the same. It's been my experience that most oncs consult each other, even outside their own clinics regarding treatments so I'm not really sure there would be a benefit to going through the inconvenience of being treated at a clinic that's out of the way or would present a travel hardship. On the plus side, I've been dealing with mets since 2006, in spite of that two year speech, so don't let that get you down. IT IS only a statistic. If however, your getting a bad vibe from your mom's current onc, it probably wouldn't be a bad idea to pay for a second opinion at another facility just for peace of mind. Half the battle is confidence in your team. Oncs, after all, are just people too and there's no doubt that some might just suck. Sorry to get so wordy when your head is probably already spinning, but I just wanted to cover all the important facts when it comes to the difference between our Canadian system and the US. I wish your mom the very best moving forward....and please, disregard that 1 to 2 year thing. That's definitely worst case scenario, but it's something patients need to be told (full disclosure and all that). I've been at this a really long time and to be perfectly honest, I've only met two women who had the misfortune to land within that statistic out of at least a hundred. Not to say things can't happen, but I'd have to guess she's got a lot longer than that just based on my own experiences. Hugs to both of you.
0 -
Sasha,
I agree with the previous posts (not in terms of advice on medical care systems, as I am not familiar with Canada's system) with respect to survival stats. Many of us have survived well over 1-2 years with bone mets. I am almost 4 years out and doing well. My bone met was found 6weeks after my original dx and before I started any treatment. Bone mets are common area for bc mets, even if you have no other mets, so, no it is not at all uncommon to have them before mets to visceral organs. Will your mom be having a biopsy of the suspect area? I had and still have only a single bone met. I think your mom has reason to hope and I wish her the best
0 -
Hi Sasha,
I live in New Zealand and our health system is closer to Canada's than the one in the US (where I'm from), and I would concur with all of the above. I had to pay $450 for a half hour appointment for a second opinion. My original oncologist was Dr. Doom & Gloom. Similar to the one your mom is seeing. Told me not to plan for anything more than two years out, etc. I felt like he'd given up on me before we'd even gotten started! Anyway, I talked to the cancer nurse about it and she suggested I pay for an appointment with another MO. And he's amazing. He thinks I have a good chance at 10 to 15 years or more, and that's without any advances in medicine. His goal is to keep me alive until there's a cure, rather than keep me comfortable until I die. Best $450 I ever spent. He also agreed to take me as a public patient, provided I send Dr Doom a card every Christmas that says "still here!". Even if the medical outcome would have been the same with the first doc I had, just having someone on your side who believes in you makes a huge difference in how you feel about things. And I think that helps up the survival statistics as well.
Wishing you and your mom very good luck. And remember, as my husband reminds me: "there are lies, damn lies, and statistics".
Sending hugs,
Terre
0 -
Thank you for all the responses! We definitely left that appointment feeling hopeless and that her fate was pretty much sealed. To be fair to the oncologist, we did ask her for a time frame; she didn't offer it up.
Deanna - thanks for the replies & advice! It's much appreciated
leggo - thank you for the tips re: other Canadian clinics. We are very new to all of this. And I think it's easy to blindly trust what doctors tell you.
xbrnxgrl - no, they won't do a biopsy. Apparently it's too hard to get an accurate result from?
KiwiCatMom - love the story about Dr. Doom & Gloom. That's so our experience as well. I really like you're new doctor's idea - keep you alive until they find a cure. Love it! I can understand the doctors wanting to be upfront & realistic with their patient. It just was such a shock. She was so matter-of-fact, which we usually appreciate, but not when you're told news like that!
Positive thoughts for you all!
0 -
Sasha - this might help. I was told to be PRO - Pragmatic, Realistic, and Optimistic. And my husband keeps telling me "don't believe the statistics". It's a hell of a shock, and terrifying, and worse when you have a gloomy MO. I understanding being realistic and up front, and without treatment, I'm guessing there would be less time, but only because the treatments have advanced so quickly and continue to advance daily.
I've already outlived my first MO's prediction.
And intend to continue doing so.Sending hugs,
Terre
0 -
Sasha - I'm in the Montreal area in Quebec. I was fortunate to get a second opinion with a top specialist in Montreal through the public system. It's a breast cancer clinic that also does a lot of research. They accepted to see me but their first intention was to have me participate in a clinical trial - did not fit in any of them. So they did further testing and was told that the treatment plan I was given by the local hospital was the right one and left the door open for a clinical trial when progression knocks on my door. The local hospital has a committee made up of Oncs, radio-Oncs, orthos, surgeons etc in which they share all the info and especially new cases. As to stats - DEFINITELY do not listen to them. I had done my research and asked my Onc what my prognosis would be - she told me the stats are outdated and she has patients in my situation who have been stable for years and will be treated as a chronic disease.Whishing your Mom the very best.
Linda
0 -
Good morning all, when I was dx'd with bone mets, my DH and I were devastated and depressed. Thank G-d I had an upbeat pain MD, MO and ortho onc. All of them said the same essentially: You beat it once, you will do it again! Our mind body connection is so strong, you must constantly fuel it with positive, energizing thoughts and actions. I was told to live my life, enjoy to the fullest. Shoot, you could not wake from a heart attack or die in a horrible car accident. There are no guarantees in life. There is an old Yiddish adage, "we plan and G-d laughs". Keep planning and moving ahead, none of us know what is going to happen next.
And on a happier note, Dune, HAPPY, HAPPY BIRTHDAY TO YOU! 🎉🎉🎂🍧🎁
And to all you wonderful, mothers, aunts, grandmas out there, Happy Mother's Day. Best days to you all....Myra.
0 -
OH yes Dune - Happy Birthday! Have a great day!Hugs and virtual birthday cake coming your way...
Linda
0 -
Happy Birthday Dune! Wishing you a wonderful day and MANY MORE B-days!0 -
AnnieO, Just saw your good scan results on the waiting room thread. So happy for you! I know we all have NED envy, but stable is good too.
0 -
Whew! I have been too busy to check this site for a couple of days and I was pages behind!
Re: Xgeva. I was told no invasive dental work while on Xgeva. If you might need it, I would suggest having the dentist talk to your MO before proceeding.
Dune, happiest birthday ever! Have a great day!
Patti, it's so good to hear smiles in your posts. It's been tough, but you're tougher. Good for you.
Sasha, when I was dx'd in January, I asked my MO right out for a prognosis, and he said he couldn't give me one. Every patient is so different and there are so many new things going on in this field that it's impossible to predict. He is very conservative, but even he said that mbc is more and more being considered a chronic condition. I know your mother has a more difficult form of bc, but this doc's attitude is very concerning. Your mom needs someone who will fight with her to survive, not someone who started the stopwatch. Attitude is so important and the doc has to be working with her, not just biding time. Because of this thread, I have good questions for my MO every month when I see him, and the answers always make me feel positive and hopeful. We're realistic about the future, but always hopeful. I couldn't deal with this if I had a doom and gloom doc. I feel a little crazy from this now and then as it is!
Speaking of my doc, I saw him yesterday and my tm's are down to 21 from 99 in January. I'm grateful the Aromasin is working and that I have this thread to share the ups and downs this dx brings. You are all in my prayers always. Have a great weekend.
Sharon
0 -
Hello to all,
Happy Birthday Dune, hope you have something special planned, you deserve it!
Patty it makes me so happy to hear you're out and about doing things and were able to plan for your son's birthday! You are one tough cookie!
Terre, I hope you're feeling better and are able to rest this weekend.
Jobur, yes I did get good news and though not NED she said with the bone scan all they can see is the lesions but have no way of knowing if the cancer is active. I like to visualize it dying off, especially with all the radiation I had. The CT scan I had in February said the lesions were healing and my orthopedic doc said they couldn't even tell where the cancer was anymore in my humerus, it was completely filled in. I have to take all the positives and pray for continued improvement.
I hope everyone has a nice weekend! Hugs, Annie
0 -
Happy birthday, dunesleeper! Each birthday feels like a victory over bc and I hope you have a good one.
This is a very active thread and I'm not too good at keeping up with everyone but I do think of you and am always wishing for the best for everyone
Terre,
Hope you're on the mend. Respiratory system infections, especially the throat can be miserable. Please tell,your doctor that I love the PRO acronym. That nails how I feel about my bc.
Yesterday evening, I noticed that the inner part of my right upper eyelid was a bit red and swollen and it felt like I had eyelashes in my eye. A bit worse this morning so I called the advice nurse and will be seeing a doctor in a few hours. Stye, pink eye, mets of some sort? I laugh because only when you have metastatic cancer would your mind even think that something like this is mets. Really, my greatest concern is pink eye, because that would keep me out of the classroom on Monday
Caryn
0 -
exbrnxgrl, I have a big stye on my left eye and two smaller ones in my right one which started after my first dx, nobody seems to know what they are and the only treatment available to me is ocular plastic surgery which the insurance considers "comestic" and therefore not covered, if I was you I would have it looked into sooner rather than later before it grows so much. The last doctor who saw it told me if we were in the middle of Costa Rica and there was nobody else around he would just poke it and drain the fluid and no one would be wiser for it but here in the US health system a big stye that stings is nothing to be considered. Hope you get better care and please let me know what they tell you.
Aurora
0 -
Happy birthday, Dune!
Great news, Annie!
Caryn, hope they figure it out quick and it's nothing that causes drama. Feels odd saying that I hope it's pink eye.
Congrats on TM's Sharon!
Aurora - I had a stye kind of thing, and my MO was able to say it was interfering with my vision and insurance covered it. (I could see it; it was on my lower eyelid and was annoying as hell). Went in for surgery at the eye doc/surgeon's office. He extracted this perfectly round thing. Had it biopsied. It was cat hair.
Apparently, a piece of cat hair had worked its way into the skin underneath my eye (lower eyelid) and my body formed a perfect pearl around it. Surgeon said it was a first for him. Anyway...see if your MO or someone will say it's interfering with your vision and if insurance will cover that.Hugs to all,
Terre
0 -
Terre,
Yikes! I have two dogs that shed, so that got me worried (although better than mets). So, I did go to the doctor and he thinks it is just simple dermatitis. No make up for a week or so (might scare my students!), no soap or creams/lotions around eye area. I have to gently apply 1% cortisone cream, on a cotton swab, 2x daily. So, do you think it would be better to wear no eye makeup at all or makeup on my unaffected eye? The thought makes me giggle. He also told me not to rub/touch my eye, so of course, that's all I want to do
0 -
Caryn, didn't mean to scare you. It was actually quite comical at the time...this little bump that just kept growing. And turned out to be pearlized cat hair. Glad yours is just dermatitis. I think doing one eye only is a great idea...and you could do like a different theme on that eye every day. Like cat eye one day, smoky eye one day, Lady Gaga eye one day, etc. Teehee.... Hope it clears up soon; just annoying as heck to have eye issues and yes, all you want to do is rub it!
0 -
Of course you want to rub it now Caryn. It is cruel of them to even tell you not to touch your eye. They must know what's going to happen. LOL
Sharon, I love how your TMs dropped. 20 is a great number!
Thanks to everyone for my happy birthday wishes. It was a nice relaxing day. I just had to go downstairs and have another piece of cake. I can''t believe I did that when I am feeling full, but I managed it. LOL. Anyway, I'm all done. Mom gets the last piece, and I eat less and move more.kkkkk
I sure am sleepy. Maybe I'll fall asleep quickly, despite the sugar rush.
Happy Mother's Day to all you mom's out there
0 -
Happy Birthday, Dune! May the year ahead be full of only good health and good reports!
Sharon, wow, that's quite the drop in TMs! YAY for you!!!
Caryn, glad to see your doc wasn't overly concerned about your sore eyelid. Keep us posted! If I had to go without eye makeup, I'd probably just wear sunglasses all the time.
Myra, your comments about the mind-body connection really resonated with me. Early in my mets dx -- when I was hobbling around on a cane -- I still remember how bad I felt when my local onc, as experienced and compassionate as he is, just shook his head and basically shrugged off the pain as being from the mets. Without saying so much, he made me feel that I was headed downhill with probably no real hope of improvement. Thank goodness my UCLA onc is far more thorough and optimistic -- and thank God I found out my femur and pelvis were actually fractured, which could be and were repaired. It makes me really sad to think how hopeless someone's choice of words -- especially an onc -- or subtle facial expressions can make us feel.
Happy Mother's Day everyone!
0 -
Happy Belated Mother's day all!
KiwiCatMom - Terre, that's a great way to look at it. I am definitely stealing PRO for my mom. I'm happy to hear you have outlived your first MO's prediction! Keep it going
LindaE54 - thanks for this info! I have found plenty of other research that says the same thing - that we should be treating this as a chronic condition. Best of luck to you!
Myra1211 - I have heard that about the mind/body connection. My mom's not such a believer in that, as she is pretty scientific in her approach to most things, but I guess now is the time to get on-board with that!
Sharon8 - You're right! I've already been thinking about more questions we should ask. Congrats on the TM's!
Hello and best wishes to everyone else
0
