Bone Mets Thread
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First i would like to wish everyone a better weekend!!
Deanna, that was funny about Xgeva. Dani also had all dentistry work done prior. Interesting that her Rad Onco said NO bone scans, he doesnt think it's a good idea. Feel better!!
Dune good luck on rads.
3-16-2011 my daughter will need rads to the sacral area, she might have issues?????
Linda E could you have reflux?? My hubby was coughing his head off, doc gave him Protonix, xray was neg.
Thanks for the comments on infusions.
Scans have been showing progression and progression. Onco wants to wait for Kadcyla to work. BUT with different type of scans for Thoracic and Lumbar/Sacral at different times showing extensive mets, throughout the visualized area!, how can we just wait.
Second opinion so far hadn't call us back as promissed, UNFORTUNATELY 2nd opinion a BIGGIE in a BIG cancer center, wants to investigate with current Onco. Cowardly if you ask me, he is above her professionally, afraid to give his opinion??? We asked him we wanted HIS opinion, he promised he would
be honest BUT wants to find out what her thinking is. The bottom line is we don't have an answer yet.Now, there is the new opinion guy, he thinks out of the box. He is in private practice with some others. The benefit is he does not have to answer to BIG chiefs(aka hospital mafia), so his practice is known for going the xtra mile in the sense that they mix treatments. They start at a lower dosage see how the person could take it, and manipulate it like this. Unfortunately, i have heard of them in the past, and I know that ppl go to him or get to him, when all else is failing. So it is truly ridiculous and sad, that that is where we are holding. I CANNNNNNNNNNNOT believe it. He is very young but has the umph to do things that others don't. Very hands on. He immediately sent us for an MRI of the sacral area, my daughter was complaining of lower back pain AND some numbness. Lo and Behold it's a very messed up. TOTALLY metastatic.!! You should see the way they highlighted the whole paragraph, I think Radiologist could not believe it! So of course Radiation is recommended, NOW if we don't go back to current ONCO my daughter would prefer to go to a new Radiologist Onco also, because this one dropped the ball already a few times!! We tell him something is bothering her, and he is slow to figure out what to do about it, and messed up the order so she just had the Thoracic part AND had to wait to get the lumbar/sacral THAT WE realized was not followed up, till this day he still does not realize that was not done or ignored it!! So we have to look for new connections.
So, what would you do??? Anyone had this experience? Ever heard of docs that mix chemos. And he is no charlatan, definetly highly recommended and I know for a fact that many people had good results. He is not promising a cure, but to HALT IT!!!!!! Also, he texts me, and will explain and told us that he will look at us as part of a team, and we will going through it together! I asked him straight out, are you being nice bcs it's the first visit, he said he is always available, and I did hear this from various sources.
Would love to hear your views on it.
She just had her 3rd Kadyla treatment, after Herceptin/Perj/Abraxane failed!!!!!!!!!!!
I am sorry i could not address all of you wonderful people.
Cristina, my warm wishes to you.
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hi everyone-I'm new to the bone mets thread. I was diagnosed a little over two years ago I was stage 1 for two weeks then bounced to stage 4 after a bone scan to baseline me. I have been relatively stable since diagnosis but I have a question-I have been in need of a knee replacement-I had my surgery scheduled the week before I was diagnosed with breast cancer. I put the surgery off because I wasn't sure what my path through this was going to look like and didn't want to spend 6 weeks recovering from a knee surgery now that things are calm my orthopedist wants to do the surgery and my onc is on board as well but are leaving the decision up to me(it is quite painful but I am able to function on it with a brace I'm just really scared to put my body through all that recovery but there is never going to be an easy time. Have any of you had elective surgery since your diagnosis? Have a great weekend and thanks for your input.
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Golden - glad you're getting answers. I have a fractured femur, but because it was so eroded from BC, they put a pin in it and nothing else. I'm sure others will weigh in as I've read about others with similar fractures.
Momallthetime - I just want to spew profanity at the treatment you and your daughter are getting. Just absolute crap! I wish I had answers for you, but the best I can do is prayers and good thoughts. And perhaps virtually cussing your the doctors. I'd probably go with the third guy who sent you a text. But that's just me - I like people who think outside the square and who are optimistic. Having an optimistic proactive MO has made a huge difference in my life and attitude. All that said, I'm sure others have more educated opinions than mine.
sending hugs and good thoughts,
Terre
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Wow, so much activity on this thread!
Welcome to all the new ladies here, I too am fairly new to the stage 4 world. It does get a bit easier, but still tough for me emotionally.
Hugs to all!!
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Deanna, to answer your question… Dr. Hurvitz wasn't accepting new patients (not surprisingly!), but I saw Dr. Peddi and loved her. I get the feeling you can't go too wrong at UCLA with the breast cancer team. They're on the front line.
Chelle, Tamoxifen was my first treatment. It can be very effective for premenopausal women (I was 45 at diagnosis). I wish you good luck, and hope you're feeling a bit better today!
Happy weekend everyone!
Rose.
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Thanks for your words!
I am still trying to figure out how I will cope with this diagnosis, physically and emotionally. I would love a sabbatic year, being on my one, meditating, doing yoga, living outside the city... but I just could not leave my 5 year old son. However I am planning on doing something similar for a shorter period. I am sure it will help. And will finally find peace.
REgarding male comments, my husband has had some really nasty comments as well. I remember one on may 2013: you disappoint me. Because I was so sad, angry with the diagnosis!!!!! In general he is supportive but for the real support and "ears" I look for my female friends.
Gotta go to sleep. I have a long day tomorrow! My son´s bday!
Have a great weekend!
xoxo
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I'm so behind on reading the thread! I had ct scan and Bone scan yesterday. My new health insurance is awesome so far!! Approving things right away even xgeva has been approved for a year!! I feel strangely optimistic about my scans. I hope i'm not setting myself up for disappointment. sometimes I'm able to be peaceful and let go of the fear. Arm still bothering me big time. Hoping for a peaceful night for us all.
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steel rose, how long were you on the tamoxifen? Did you respond well? I am 46. The se say joint pain and mood swings. Were they drastic? So many questions, and no words of wisdom. I hope I can be knowledgeable and helpful to other ladies eventually. I find myself having major mood swings already, one minute I'm crying, the next feeling positive. I'm such a mess. Hoping everyone has a nice weekend! Love to all!
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.HFC it sounds like you have reason to be optimistic, especially with your new insurance. Enjoy your weekend.
Terre, I think it's a fantastic house. Oh boy! Congratulations!
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Thanks, Dune!
HFC - so happy you have insurance!
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momma all
This is my second attempt to respond so hope it posts this time. I changed onc about 9 months after dx. First one was good, no real complaints but when I asked about a new treatment he referred me to a younger colleague at same clinic who he said knew more about it. I hit it off with the not much younger guy (also v highly regarded) and felt I could work with him. He was enthusiastic, inspiring, imaginative, no rash promises. Two years later he still answers e mails promptly, came straight off a plane from NY to see me in hospital and drops in when I'm in the treatment suite, despite being fantastically busy. He mixes immunotherapy with chemo. He also welcomes second opinions and dialogue w colleagues (including my original onc). I think that's important.
All of which is to say that switching worked for me. No idea whether it has made a difference but I and my husband feel good with him. I don't know anything about the relative merits of your possible choices so please don't take this as a recommendation just my personal experience. Only you can decide who you're most comfortable with but either way seems you need a frank discussion with your current team.
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momma all
This is my second attempt to respond so hope it posts this time. I changed onc about 9 months after dx. First one was good, no real complaints but when I asked about a new treatment he referred me to a younger colleague at same clinic who he said knew more about it. I hit it off with the not much younger guy (also v highly regarded) and felt I could work with him. He was enthusiastic, inspiring, imaginative, no rash promises. Two years later he still answers e mails promptly, came straight off a plane from NY to see me in hospital and drops in when I'm in the treatment suite, despite being fantastically busy. He mixes immunotherapy with chemo. He also welcomes second opinions and dialogue w colleagues (including my original onc). I think that's important.
All of which is to say that switching worked for me. No idea whether it has made a difference but I and my husband feel good with him. I don't know anything about the relative merits of your possible choices so please don't take this as a recommendation just my personal experience. Only you can decide who you're most comfortable with but either way seems you need a frank discussion with your current team.
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Good Morning To all
This thread is so active; I read it everyday, yet often feel stumped/overwhelmed to post because I feel like I can't keep everyone's journey's straight at times
I know many are in various stages of pain and maybe Linda has a cold. Dune aren't you planning a party? Terre, I think a house and looking TOWARD life is so important- congratulations
Momma- I feel heartbroken and frustrated every time I read your stories- how can doctors, who take an oath to heal, be making this so difficult. If it were me, I would surely switch....
Deanna, I always appreciate your posts and words of wisdom, you too Linda 54
to all the newbies who find themselves here- it truly is a good place to hear about many things- I am newly Dx myself, and still very much in the overwhelm mode... Trusting that things will settle out.
Chelle- I have just started tamox, so I can't give you a seasoned answer, but started 2 weeks ago and haven't taken note of anything in particular.... on mentally strong days, I position my thoughts with the fact that life is CHANGE and everyday with or without medications, bones mets, whatever, is DIFFERENT. moods go up and down, aches and pains come and go. Sometimes there are long periods of ease, sometimes struggle. This is just another facet.... sometimes, when I can get to that place, I see it all as just being life- AFTER ALL, ALL of us here are still ALIVE!
I notice recently several sharing about their partners/husbands struggling and not feeling supported. I do think it's important to have different outlets for our very real fears and struggles and pain. I am going to be hunting for a good therapist this month; had one for a while but scheduling with him very difficult since I moved out of Manhattan.... so that's a September project. I also listen to these Zen talks, quite a bit. I highly recommend them; very soothing and really help to get me super present: http://zencare.org/zentalk
I am mentally gearing up to start Herceptin Monday. Preparing a big pot of bone broth and a few nourishing infusions to have on hand for the beginning of the week.
Really hoping everyone has an easeful weekend; body, mind and spirit.
Hugs
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Good morning all,
Terre - I love your house - congrats!
HFC - Yay on insurance.
Bosco - how's the infection? I'm not doing better, still coughing. Anyway scan on Monday should tell if there's something brewing in the lungs.
Happy Saturday to all
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Linda
Still coughing too and now completely deaf in one ear! But I think antibiotics are helping. Also used steam room and that eased things a bit (our shower has a steam unit). Sorry you're still unwell and hope the scan shoes nothing brewing. My last one showed some nodules which the radiologist says is not disease but inflammation from an earlier summer chill. I think they'd light up like beacons if I were scanned today. Might be worth quizzing them on that. Hope you feel better soon.
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Good Morning,
LindaE- bet you are tired of that coughing and glad you will be getting a scan. Maybe someone could take a quick listen to your lungs?
Terre - So exciting about your new home and baby lambs next door!
HFC- Getting approval for your treatment is great.
Bosco- Sounds like you are in a good place emotionally and medically with your doctor. We all know how reassuring it is to have trust in your doctor.
Gaia- Good luck with Herceptin. I have not had that, but a friend of mine did very well on it with minimal SE's
Beautiful cool fall day here so I'm heading out to do some walking on some trails around here that wind through woods. Need to get these aching bones a moving! I get fitted for a brace on Monday, so actually looking forward to that. A friend gave me a shirt that says Breathe on it. So that is my big word of the weekend to myself and to all of you as we continue to go forward on our journeys. Just Breathe.
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Hi! Haven't been on in a long time & don't know if I've posted since my mets. Original DX 5/2013 triple negative IDC. Had single MX (no reconstruction), chemo & radiation. Finished treatment 1/31/2014, and had my port removed Aug. 2014. May 2015 discovered recurrence w/mets to bone. We knew about spots in breast (original), lymph nodes, sternum, lung & spine. Been on Xeloda. My AST # went up to 113 so I asked for scans. I was scheduled for scans 8/29 but with AST & some pains I was having we moved it up. Just found out cancer has spread to the stomach - possibly lining around the bowel. Meeting with Mo Tuesday to discuss switching treatment. They mentioned possibly weekly taxol again. I might need to have my port put back in - it took 2 hours & 4 people to get an IV in this week. A bit discouraged/mad/upset to hear this news. Could use some extra prayers.......
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hi ladies,
I've need up in Lahey Clinic for emergency surgery. The bone met and radiation caused a fracture in femur. They put a rod in my leg. This stinks. Anyone else have this happen? I'm kind of scared. Dh is across country and wouldn't dream of flying in. I'm dependent on my 88 year old mom. I want to live to 88. This isn't fair and I'm not in a good place.
Rachel
P.s. All who said the pain wasn't normal-- you were right!
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Lana - a warm welcome to you. Prayers certainly coming your way and good luck with your Onc appt and next tx. You have every right to be feeling the way you are at the moment. We are here to support you.
A lot of newbies these past few days, can't remember if I welcomed each of you.
Rachel - OMG my heart goes out to you. I had that same surgery in April 2014. My femur was not fractured but it was a matter of days before it would have. A few of us had that surgery. The recovery may be a bit longer if it was fractured before surgery, but don't quote me on that. I'm sure others will chime in soon. You can expect a lot of swelling and bruising and you will be given some exercises eventually. Take the pain meds and wishing you a speedy recovery.
Bosco, my ear is starting to hurt. Went to pharmacy to buy OTC for flu, but consulted pharmacist who advised there might be toxicity with other of my meds. He said my cough doesn't sound good and was happy to hear I had that scan scheduled for Monday. Lindalou - will try to get someone in the hospital to listen to my lungs. So drinking a lot water and resting - don't have the strength to do anything else.
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Linda E, worried about you. Get well soon....Myra
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NYChutzpah, thanks for sharing your personal recollections of 9/11, and also about your hubby. I love getting to know each of you through these personal glimpses.
Terre, love your new house! I hope moving will go quickly and smoothly.
Cuculi, that's really sad what your hubby said to you. Men just aren't very good at things they can't control, and I'm sure the comment sprang from his feelings of helplessness and frustration, but it's still one of the worst comments I've ever heard. No matter how down you were at the time, you didn't deserve that! I'm really sorry.
HFC, I'm so glad your insurance is working out so well! Fingers crossed that your scan results are all good! You must just be so relieved to finally be getting this stuff handled.
Bosco, I'm so happy you like your new onc so well! I do think younger oncs may have an advantage, as long as they do a lot of bc, so also have the experience. Things are changing so fast, they say if you went to med school more than 5 years ago, you didn't even learn what's being taught today. It's really a whole new world, especially oncology.
Momallthetime, I think your newest onc find sounds very promising -- as long as he has a lot of experience, too. So far it sounds like he's found at least one hole in Dani's previous evaluations. Thinking outside the box is great -- as long as there is some rationale for his creativity. Drug combos seem to be a new way of approaching cancer. I would just want to be sure that there is some research to back up what he's doing and he's not totally shooting in the dark. And as far as the other opinion onc wanting to talk to Dani's current onc, I don't see anything wrong with that. In fact it seems prudent to me for him to understand why she's made some of the decisions she has in Dani's tx -- things that may not be evident from simply reading a file.
gaia, I always appreciate your holistic point of view and input!
Lana, that IV experience sounds absolutely horrible. I know it must be so discouraging to have to have a new port, but you certainly can't go through the other ordeal on a regular basis. I will pray that the port surgery goes extremely smoothly, and that the Taxol works great and quickly to stop your progression. Please keep us posted on your situation.
Rachel! I am so sorry to hear about the need for emergency surgery, but so glad it's done. Yes, I had the same thing -- which is why I knew your description of your leg dragging wasn't normal. The good news is, even though the first week or two will be rough (my thigh literally looked like a watermelon for the first few days), as soon as you're up and scooting around on a walker, your leg should heal very quickly and you will be better than before and not in the pain you were in. I also had quite the pity party when I went through it, crying for two days, thinking my life was spiraling downhill and out of control. But you'll be surprised at how fast you will heal from this and how good you will feel in just a few weeks. Hang in there! Extra (((hugs))) to you right now, and please keep us posted on your progress!
Linda, I'm also concerned about you! Are you even well enough to get your scan on Monday?
As always, hugs and positive encouragement to everyone not specifically mentioned due to the length of this post. Deanna
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Thank you all for your concern. No problem getting to scan on Monday. I just don't know how the bone scan will go on Wed - lying still for about 45 minutes, and as soon as I lie down, it's worse. We'll work it out - don't want to miss it.
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speaking of husbands .......no wonder you hurt you don't do anything! ......what? I keep the house clean and do all the cooking baby sit a couple times a week. Make sure he had lunches made and clean clothes. But I do nothing because I nap.. He is in a foul mood often. About everything.
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(((Lana, Rachel, Linda))), and all those who are going through it right now… you are certainly in my thoughts and prayers. I cannot express how much I HATE this disease and what it does to us.
Chelle… I was on Tamoxifen for 6 months, right after being diagnosed at stage iv with mets to spine/sternum/liver. It stabilized all of the mets. The side effects were tolerable, mainly hot flashes and joint pain. If you have any other questions, feel free to send me a personal message!
Love to all…
Rose.
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Linda--praying for you and the scans. I hope you can get to feeling better soon!
Hope--tell your hubby To go jump! Wth? (((Hugs)))
You all are in my thoughts. Seems like so many are really having a hard time. Very sorry
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- A new picture of Mallory. Can't wait to see her in October. Myra.
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Lana, Do you go to UW Carbone? Ask for the medical flight team to give you an IV. They came down for me one time and got it in right away. They were happy to do it. Hope your visit with your MO gives you some direction. How is your pain?
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Deanna ,
I've been having that same pity party. I wrote this morning is this the beginning of the end? Thanks everyone for your support!!! Yup, you dx it!!
Rachel
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Myra - Little Mallory is beautiful and precious! What a beautiful pic.
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Hello to all,
Terre, congrats on your new home, looks like it's going to be a beautiful place for you and dh.
Lana, you've got all the extra prayers you need!
Rachel1, so sorry you needed emergency surgery, but praying that your recovery is quick.
Linda, I am very worried about you too. Sending you healing hugs.
HopeFaithCourage, sorry about the comment your husband made to you, just not right.
Myra, what a beautiful picture of Mallory, she is growing so fast.
Hugs to all, Annie
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