Bone Mets Thread
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Xavo, I'm sorry you have to deal with this. Hoping the second opinion will give you clarifications. Regarding your T-9 fracture. I have fractures in T-8 through T12. Ask your onc or second opinion doctor about a Thoracic MRI to give you more detailed images and to check on the spinal cord. That is very important. There is a also a procedure called Kyphoplasty where a surgeon can inject a cement like substance into the vertebra to strengthen it. Ask if you should see a neurosurgeon. Not everyone qualifies for that procedure but worth asking. It can relieve a lot of the pain you are having from the fracture. Best to you as you continue to seek answers.
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Xavo, I have been reading and rereading your post over and over again. I am trying to make sense of all the reports and how you were so terribly treated. Trust in our doctors is paramount with this stinking disease. I understand you have your films, but please let your second opinion at Dana Farber read them and interpret for you. You don't want fingerprints on them which could make reading them difficult. You are obviously a very clinical woman who wants all your ducks in a row. Hooray for making the immediate decision for a second opinion. Make sure you have a second pair of ears with you to listen and take notes for you. This is a very emotional time for you. Best of luck and please keep us posted.
So happy for good results from all others here. I wish I could name you all, but this bco site is not very sophisticated and you can't look back pages or you lose it all. Anyway, best to all this morning. Linda, Lindalou , Terre, Deanna, Patty, Dune Karz and a special hug to you Xavo.
Myra
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Xavo, I went to Dana Farber in March of this year for a second opinion. My very new oncologist at home wanted to change my medication because I am now menopausal. I kept asking her why if everything was going well with the current treatment and to that she did not have an answer. Anyway my point in telling you this is that the trip to Dana Farber was wonderful. I saw Dr. Erica Mayer and I was very impressed by her knowledge of my cancer history. She spent a long time going over everything with me from 2008 until present treatments. She told me to stay on current medication until it showed signs of failing and then talked about where we would go from there. I feel so much better knowing if I have progression that I can call Dana Farber and be seen again.
I will hope that your visit goes well and that your doctor will offer you treatment options that will work well for you. Good Luck!
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Terre, Amy, LindaE, Lynn, LindaL, Myra, Teacher, thank you all for your warm support and precious advices (I will not touch the CDs)! After sleeping on the issues, I kind of figured out my way. 1, I will be very alert at observing how the current medical setup treats my disease. If it's necessary, I will move my entire care to Dana Farber. 2, I will pursue to have the T9 fracture treated with the procedures. I am learning a lesson from my newly started treatment here. I was not aware of it before because my first round BC treatment was done in PA, by a first -class team, 13 years ago. My surgeon, Dr. Thomas Frazier who is on the professional advisory board here, did the BC surgery for the wife of the #1 surgeon at UPen hospital (who invited my surgeon); my oncologist, Dr. Sandra Schnall who is also on the professional advisory board of this website, used to teach at UPen medical school and is specialized in BC oncology; my radiologist was Dr. Marisa Weiss, the founder of this website. I was then perfectly aware of that I was in the good hands. So I did not have the need to find out how everything going. I was given copies of every reports without asking. I was only concentrated on doing my treatments. That should be everyone's situation I thought. I took it for granted! After the treatment finished, I moved back to MA. For 13 years, I did not need very much medical care. I only needed to see my onc here every 6 months and then yearly with nothing to report and did the annual mammograms and the physicals. I saw my terrible ex PD for less than two years (the PD I saw for ten years before this terrible ex PD left the area), hardly knew her. So, when this second round began, I have to figure my way out like a beginner. I was puzzled why I do not have the copies of everything. Finally I learned that I need to make calls and ask for the copies. How much I missed my first medical team now!!! I did not mention my first team before because I felt sad that I eventually kind of let them down (I know it's not the case, but still). Alright, I am learning.
Deanna, if you ever tried the Sollievo, give it two days to start the metabolic circle. Then all will happen naturally, like your own young self came back.
Everyone who checked in here, have a brilliant weekend!
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Hi Ladies,
Chemo did go well yesterday. I did also get one dose (all they will give to start) of yes Relistor. I will use it tomorrow and let you all know how I make out. Thank you everyone who have sent kind words and I wish everyone the same good news and less pain. Annie - hoping your pain is just weather related, wishing you the best results on your scan coming up. Deanna - holding your hand too, waiting for scan results is just the worse. I get scanxiety too! Xavo - sorry for what your going through now. Best wishes for the outcome and 2nd opinion. Karz- GREAT News..congrats!!! Hope -glad your approved for Axtandi!!!!! Sure hope it does the job for you. I will let you know how I make out with my injection. LindaE54- I know it must be difficult to make your funeral arrangements. It is hard to even talk about, wishing you the strength you need to get through it next time. My daughter is coming next Wednesday when I have a hospice appointment coming to make my final arrangements. Not looking forward to that day either, nor is my daughter. I'm not even sharing that info with other family members. I want to spare them as much as I can. Lindalou- I am booked for my first rads on Aug. 19th. My MO thinks it will help with the pain. If I get help with that and the bowel movement issues I will be so relieved.
I know I missed a few of you but there were so many posts to go through and my steroids are wearing off and I'm getting very tired now. Wishing you all a great weekend and sending love and hugs to all.
Cathy
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Cathy, we must have posted at the same time. Thank you.
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Cathy, glad chemo went well & thank you.
Xavi, do what you need to do. We are all our own best advocates.
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Cathy - glad the chemo went well. Hospice planning would be hard, as is other end of life planning. That said, once I had mine done, it was like a weight was lifted. Kind of like "that's sorted, now I don't have to think about it again!" Might be denial.
Xavo - still just stunned at the way you've been treated and so happy you have a plan in place.
Great advice, Teacher911 - I'll mentally file that away for future reference.
Linda, Lynn, Lindalou, Myra, and everyone else - sending good thoughts for a pain-free good day.
Hugs,
Terre
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Xavo, it's too hard for me to write much on my phone, but just want you to know my DH (I read it aloud to him) and I were both horrified and mad at what we quickly gathered skimming your lengthy post between my scans yesterday. Headed home now and will catch up on yours and other news and responses later, but glad to see you have a game plan and and are feeling less stressed about everything.
We're creeping along in stupid LA traffic...
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Safe travels home Deanna...and hoping for great scan results.
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Hello everyone,
Just got home and I'm so tired. My daughter and I had an amazing couple of days away. Spent it relaxing, swimming, talking til the wee hours of the morning and eating way too much. Early to bed for me tonight.
Xavo, so sorry of everything you've had to deal with but so happy you're getting a second opinion and have a plan in place. A real lesson in what happened to you for all of us here.
Cathy, glad to hear the chemo went well and hoping you're feeling better this evening. I live in Ontario as well, very near to Niagara Falls.
Linda, how did your scan go and when are you expected to have results? Praying for good news.
Deanna, you must be exhausted, hope all went well with the scan. It's the civic holiday long weekend here so our drive home from my friend's was a bit nerve wracking. Drive safely.
Terre, just wanted to say hey and how has your weekend been? Hope you're relaxing, you work so hard during the week.
Haven't seen Patty, hope all is well and you're enjoying the rest of the summer with the boys.
Carla, wish you would check in too, I was so happy to see your last post and pictures of your trip.
Hi to teacher911, Myra, Lynnwood, Lindalou, Karz, Romansma and everyone else. Not intentionally leaving anyone out, that's as far as my memory takes me. The girls want me to watch a movie but I'm pretty sure all I'm going to be watching is the backs of my eyelids.
Hugs to all, Annie
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Xavo - Great plan you have! You deserve the very best. You go girl!
Cathy - you know what? I decided not to make funeral arrangements. I have life insurance which will be more than enough to pay the costs. I will leave instructions with my wishes and then the rest is up to them. It's too big of an expense for me right now. I have advance directives and my will is done. Everything signed and sealed with a notary. Good luck next week. It ain't gonna be easy, but then you won't have to worry about it.
Annie - sounds like you had a nice time. Scan went well, in and out of hospital in 1/2 hour. No idea when I'll get the results - my Onc said she would call but did not say when. It's always a bit long around here. Anyway, I have my list of questions written down re my surprise mets for when that call comes around. I'm staying busy in the meantime.
Deanna - praying for good results.
Patty, Dune, Carla - would love to hear from you girls.
Sweet dreams everyone.
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Hi Annie! Glad you had a good time and hope you get a good sleep tonight. No work for me this weekend except housework!
We don't live in a pig sty - we live in a kitten sty. They have discovered how fun it is to shred paper towels and kleenex. Glad your scan was quick Linda - hope the results are too.
Miss hearing from Dune, Carla, Patty - hope you and everyone else is doing well.
Terre
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Hey Terre, lol at kitten sty! You gotta love them though. Dh and I busted a gut one day when he went to move the sofa and found that our cat had a stash of hair elastics and Qtips buried under there. If I leave the bathroom door open she goes in there and knocks over the garbage to pull out the Qtips, pulls the cotton off of the ends and then buries the stick part under our sofa. She hasn't yet touched the toilet paper roll but she does get into everything! Dh said she was depressed when I was gone, she literally has anxiety when she knows I'm going somewhere. Here's a pic of her and me when I got home yesterday.
She always lays on my chest and sometimes it's hard to breathe. I was barely home a minute, layed down on the sofa and pulled a blanket on me and instantly there was Chloe, so happy life was back to normal. 0 -
Annie and Terre- I am a big time cat lover. I adore all animals however I do favor cats. I have 2 of my own and they have such unique personality's. Annie it's pretty obvious how much your loved by Chloe, so cute. They give us unconditional love and yes miss us when we are not home. Your almost my neighbour Annie.
Linda- I did the same as you as far as funeral arrangements. My daughter knows what to do and she is the executor of my will. Another reason she needs to be here Wednesday for the hospice choices. I am sure I will feel relieved when it is over. My fingers are crossed for good results coming in. Hugs (I know the wait is hard).
Love and hugs and prayers for all.
Cathy
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Annie - your cat looks a bit like mine. I have a cat and a dog. Great pic!
Happy Sunday to all!
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Happy Sunday! I'm sitting in bed with some coffee waiting for my pain meds to kick in and trying to think of something fun to do today. Love hearing how everyone is out living life, despite all the crap cancer delivers regularly. I am being challenged to make the best of things almost daily now and I am determined to keep doing things I want to do. With a little luck, maybe my new treatment will give me a little reprieve from the increasing pain and thought process that goes along with a progressing prognosis.
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Oh I love cats! We have a sweet girl that literally showed up on my front porch one day and never left. She is just like a dog, runs to the door whenever anyone comes, follows us everywhere, and loves to be held and petted. She has been such good company to me since I have been off of work on medical leave. Unconditional love at its finest!
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Romansma
Enjoying my morning coffee is one of my favorite daily pleasures. I hope it is one of many you find today. I had a delicous chocolate cupcake for breakfast made by my dd. It was also a joy.
Thinking of you with this awful disease. I hope your pain is covered well so you can enjoy your day and your family. Sending positive energy your way.
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Happy Sunday, everyone! I see I'm two pages behind here, but I'm working on getting all caught up.
First, Karz -- Great news on your labs!!! Hooray for TM's of 40! That's borderline normal! YaY for you!!!
Romansma, congrats on getting approval for Xtandi. That's one I haven't heard of yet, but anxious to read up on it, and hoping & praying it's the magic bullet for your situation. As someone said else said above, kudos to you for researching and pushing for something out of the box!!!
Jobur ~ YaY on the Ibrance approval. Assuming we both start this month, we can be Ibrance buddies.
Oh, and thank you all so much for the positive thoughts, prayers and good wishes. Aside from it being a very long day and being in a lot of pain (I didn't want pain meds on top of all the nuclear crap they were putting in my body), everything I feared (especially the IV) went very smoothly, and I felt incredibly calm throughout. I even got a surprise reprieve re. the dreaded "Berry Smoothie," when the tech said I only had to down 3 cups this time. The only thing I didn't like was when I was leaving the bone scan room and the tech said, "Nice meeting you, and good luck to you," in a tone that made me feel she was thinking, "Poor woman... with those images, you're going to need luck on your side." Oh, what our minds do to us in those situations!
Oh, I also realized for the first time while we were away (we stayed 2 nights in the LA area) that I'm no longer any fun to be with. I moan and groan with pain and have no energy to do anything, causing my DH to constantly ask me what's wrong (when I wince or groan), as well as monitor my every step -- i.e. "Be careful... don't trip on that crack in the sidewalk," and similar annoying hovering -- all of which I totally hate! And spontaneity has totally gone out the window because he knows my energy level is down to about 2 hours, at which time he starts observing that I look beat and we'd better get me back to the hotel, etc. So totally no fun, which was a bit shocking to realize!
Trying2staycalm ~ Love the new avatar!
Linda, glad your scans are behind you and all went well! Do you think you'll get results quickly?
This is getting too long. I'll be back after I read Xavo's post...
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Wow, Xavo! I gathered your post was full of frustration when I'd skimmed it on my phone. But just reading it in detail now, I am sitting here shaking my head. Your situation is the perfect example of why I urge women not to accept what local docs tell them, but to please at least go to an NCI-designated cancer center for a second opinion. No doubt there are some excellent local docs. But the problem is -- as the situation with your ex-primary perfectly illustrates -- they can be well in over their heads and not even realize it based on their lack of enough experience with bc to know what to do, or to even recognize when something like a scan result is urgent vs. run of the mill. Wow! I feel terrible that happened to you, but if others can learn from your experience, then at least that's something positive.
It's also interesting how you pointed out the difference in care, and how you assumed what you had gotten in PA was normal. Clearly, it's not -- and again this is what I try to communicate to women who haven't gone to a major teaching hospital -- the fact that all of the docs are brilliant (often having won the one position that 3000 applied for, etc.), yet none of them assume they know it all but look to their equally brilliant colleagues for support -- unlike the docs at more local hospitals who, for some reason, seem more often to have huge ego problems, think they know it all, and don't pay enough attention to the details, which is often in the imaging.
And yours and mine are not isolated cases. A dear BCO friend just shared that a cousin of hers has just been dx'd with Stage IV bc after many months of complaining about issues that, in hindsight, a more experienced medical team surely would have figured out months ago. And it's not limited to bc. One of the most lovely men I've ever met (when we were both doing RT) had been treated for a nondescript "shoulder injury" for months, until someone finally figured out it was lung cancer so advanced, it should have been dx'd months before. And another friend of mine appears to be going downhill rapidly after melanoma surgery with a local surgeon who told her all was well following her surgery. He, by the way, was the first "breast surgeon" I actually met with when I was originally dx'd, but both hubby and I thought was a pompous a**.
I've come to realize that mediocre doctors with egos bigger than their knowledge bank are far more common than great ones, which is really scary because most people dx'd with a serious medical condition don't have a clue that the doctor they trust may not know as much as he or she would lead them to believe -- especially if your case is at all out of the range of "the common garden variety," -- a term I actually heard here applied to bc surgery when I was first dx'd, and still cringe when I think of it!
What happened to you is horrible, but, sadly, it's not unusual. You've just figured it out when many others never do.
Go to Dana Farber!
Peace and out...
(Edited to fix some typos)
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Deanna, it breaks my heart to know you think you are no fun. I guess I'm not either, so I'll have to think of something to do about that. Just don't expect me the be standing on my head or anything like that!
Romansma, I hope and pray your new drug will help and that you keep nourishing your lovely spirit. I could definitely take a lesson from all you ladies. I'm not pushing myself to do anything.
I've been in bed for days. First it was just fatigue: I couldn't wake up. That was 2 days. I got up today and got dressed, but the big ole D that started yesterday is still with me; so I don't want to leave the house. Oh well, I'll get it together. At least it's moving down there. If need be I can always take Imodium.
Hello and howdy to everyone else: Linda, Terre, Annie, Patty (where are you), Carla (where are you), Xavo, Karz, 3_16, Lynwood, Cathy and everyone I missed.
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Thanks, Dune. The no fun thing was just a startling revelation for me, as DH and I had been looking forward to a little getaway, and it wasn't at all what I had imagined.
Anyway, I just uploaded a few photos and thought I'd share this one, taken from our table at Duke's, a Malibu restaurant where we went to unwind after my day @ UCLA.
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Love the kitty pic Annie. So sweet to see you two together! And glad there are other cat fanciers out here. I was late for work; alarm went off and had 3 little warm purring furry bodies on me and just couldn't get up.
Deanna - I'm sure you're still fun. Beautiful picture. And I do hope you get your mojo back.
Dune & Romansma - hope you get to feeling better soon.
To everyone else - happy Sunday or Monday! It's Monday here and I need to get back to work...
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Cathy, yes we are almost neighbours, Simcoe is not that far from me at all.
Linda, do you have a picture you can post of your cat?
3-16-2011, what you said about enjoying your morning coffee resonated with me. My favorite thing to do in the summer is to sit on my patio in the early morning with my cup of coffee and just listen to the birds and enjoy the beauty of the day.
Romansma, I hope your pain meds kicked in and you were able to do something fun today.
Lynnwood, our cat is hilarious and sometimes acts like a dog too! She greets every visitor at the door, it's so cute.
Oh Deanna, I'm betting that you're plenty of fun, I've said the same to my dh and he's just happy to do whatever he can with me when I do have the energy, he's quite content to just sit and have a nice conversation. I'm sure your dh totally understands and is more just worried about you being in pain. My dh said to me the other day that be wishes he could take this cancer from me, he would rather suffer than to see me hurting. Beautiful picture, omg it's drawing me in!
Dune, so glad to see you back but so sorry you haven't felt the greatest. You were surely missed let me tell you. I hope tomorrow is a better day. Rest well tonight.
Hugs to all, Annie
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Terre, we must have been posting at the same time. Lol at being late for work, I always say my cat makes me lazy, I mean why would you want to get up when you have a cute little fur ball laying on you. In your case 3 cute little fur balls. I talked my friend into getting a kitten and she's so happy that I did. They bring us so much joy.
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Deanna - Don't know when my Onc will call with the results. I would hope this week but it can be slow around here. When will you get yours? I can relate to not being any fun when I'm in pain. And the "be careful" bit can get on my nerves at times. I know it comes with good intentions, but still, sometimes I feel like a 90 year old. What a great place to unwind - I'm jealous.
I always look at this thread with my morning coffee. Would be better with a chocolate cupcake!
Lynwood - Unconditional love indeed. And always in a good mood!
Annie - I'm not much of a pic person. I will dig and see if I can find something.
Dune - glad to hear from you. When I picked up my antibiotics for my boils, the parmacist warned me I would probably get the big D. I said to myself, oh finally it's gonna move down there! It didn't happen LOL.
Romansma - I wish there would be a magic pill for your pain and hope you had some fun today.
Terre - have a good week at work.
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Love my morning cup of coffee. Romansma I've been feeling very similar I feel in terms of pain. I've basically had increasing pain for 9 months. ONly the last 3 discovered it was bone mets. Now that the hormone therapy isn't working, I'm antsy to get started on chemo. I woke up at 11 am today which is horribly late for me an it upset me so much- I'm normally an early riser but I'm in so much pain it's just hard to get moving.
Deanna, I'm sure your're still fun, just in a different way now. I do feel the same way. I get so tired and out of it if I'm exerting myself for more than a few hours that I need to be close to home or some resting place.
I feel depressed bc the pain seems neverending. I have my NCI designated center appointment tomorrow at 8 am. Let's see what they say about my next treatment. I'm leaning toward Xeloda but I see in Romansma's signature it only worked for a few months, so I don't have much hope. I just need some relief from this pain and not just from painkillers. I need these tumors along my neck and spine to stop growing so fast and just shrink a little bit, PLEASE.
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Oh god Cristina, I know what you mean about those lymph nodes traveling up your neck. Ugh. They are the reason that I knew the cancer had spread. However, I could not seem to make the MO's office understand there was a problem. For now, they have shrunk down to practically nothing, just discolored with scars -- but THAT tells me the chemo is working. I hope they start treating you soon, and that you see them disappear. It puts a smile on my face.
LOL Linda, I pay little attention when they warn me about diarrhea. In fact, I hope it will make me normal. I don't know what caused this fatigue and then diarrhea, but I must do better this week. Next chemo is in the morning. I'm going to wipe out some more cancer cells, maybe even entire tumors.
I think I'm getting sleepy, so I'm going to run with that. Have a good night and good day.
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I bet you are still a lot of fun, Deanna. So, after 2 hours, we rest for an hour and then go at it again! We make compromises, but in the end, it's all worth it.
Soooooooo, my husband and I went out for lunch today. We've been doing a little car searching and had one more car on our test drive list before making a decision. I asked him, if he could have any car, what car would he want. He brought up a Jeep Wrangler Unlimited and a Ford Raptor. He chalked it up to a 'someday' conversation. So, we left lunch and test drove the car we talked about, a Jeep Cherokee. It was sensible and good gas mileage and we talked the dealer off their price by almost $5k. BUT, it didn't have the fun factor. So we drove the Wrangler. I think the dealer manager thought we were nuts when we said never mind, we want the Jeep Wrangler. We bought a 4x4 with a removable hard top. We decided we wanted something fun instead of something that makes sense. We drove home with the top off and the music blasting. You should have seen the look on my youngest son's face when we drove up. My husband is in love with it and what else matters! That was a very impulsive day. Not usually my style.0
