Bone Mets Thread
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deanna. - great news on your tm's. Glad you and your dh got to do some fun stuff while you were there. Praying for good scan results for you yes, please come give these dr's a kick in the pants for not figuring this out ! They are saying yet another uti. The million dollar question is what's the reason I keep getting them.
Lynne I agree your grand daughters pic should def be used in some sort of ad. It's wonderfully perfect. If i. Could put a caption on it , it would say "don't mess with me I haven't finished my sippy cup of coffee yet " Love the roses and hope you and dhcan get some rest at home together.
Bosco. Thinking of you. Hope you get home soon.
Lindae. , Annie, chelle and everyone else I missed: big hugs
Anotger bad night last night. Between the central line not working , and even alternating zofran and pheneran I still vomited more than a dozen times. Which makes my back pain so much worse. Well my wbc keeps going down not up. It's .4 now so they are doing reverse isolation. Where the hospital staff and visitors wear gloves and masks to keep me from catching their germs . they did get a new pic line going for me. We left the central line in for a backup. I have been hesitant about getting a port but it looks like it has become a necessity . I had one the first go around but hated the constant reminder of cancer when I looked in the mirror or felt it. I am on my off week of Ibrance . it looks like a few more days of IV antibiotics is on the schedule. Sigh. Oh well, it could always be worse. Don't have to look very hard to see people who are going through so much more.
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Patty, I am sorry that you are still in the hospital. I hope they figure out what is causing this to happen to you so often. There are so many tests that can be done, but they still don't always get the answers they need. I think that a few pages back someone suggested getting Dr. House to treat you. I am all for that. He will undoubtedly misdiagnose you a few times, but he will have the correct diagnosis and cure in less than an hour. You are in my prayers. I hope that you are on the mend soon so you can return home.
Bosch, I am still thinking about you too, and I and sending you good thoughts and prayers that you respond to your treatment and go home soon.
Deanna, Good luck on your scan results. You should find it encouraging that your TMs are down.
Lulubee, You have so many good suggestions for keeping busy in the hospital or anywhere else. I am going to write them down for future reference. Thank you.
Chelle, I hope you figure out what your creaking and cracking are from. Are you in a great deal of pain? Is it interfering with your daily routine?
Since my DH can only have liquids until the inflammation in his duodenum heals, I have become good at experimenting with cooking while trying to find things that he likes and that provide him with the protein and vitamins he needs. I made a delicious chicken vegetable soup today, used my Magic Bullet to blend it till it was thin and creamy, then strained it. I had no idea how he would react, but he loved it. Unfortunately, he can only have small portions at a time since his stomach still empties slowly. Mind you I will probably never be able to make exactly the same soup again since, as I sad, I was experimenting. I have no idea how much of anything was in there. Oh well. I am hoping he can eat more soon because it makes me nervous that he continues to lose weight. Anyway......he is very happy to be home and has had two really good days here. He will slowly regain his strength and weight.
I am sending love to all of you. Here's hoping for good scan results, quick recovery and healing, freedom from pain, successful treatments, and above all, happiness to each and every one of you.
Lynne
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Oh Patty! I remember reverse isolation, make sure they don't bring in blood pressure machines etc from other patients. They did that with me & caused me to get another infection. One of the student nurses noticed that & she put a stop to it. I've never had a picc line, but I love my port, ok maybe love is too strong, but it makes it so much easier to have everything done through my port. Now that I have MBC, I am reminded of having cancer every day anyway, so may as well make it easy on myself. Take care.
Lynne, glad that your DH is able to eat a bit of something that is probably way more nutritious than hospital food. Fingers crossed that he gets stronger everyday. Love your GD's bad hair day, so cute & the roses are beautiful.
Deanna, TM's headed in the right direction, good for you. Good luck with your results.
I am getting my thyroid blood work tomorrow along with my labs for kidney & liver function. It'll be nice to know if it is my thyroid giving me problems.
Hello to everyone else on the thread. cheers, Dee
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dee. Hope they figure out if it is your thyroid. I am amazed how many stage IV also have a low thyroid. Wonder iif this has been researched before
Lynne. So glad y'all are back home. Now you get to spoil him and fatten him up. Don't forget to take care of yourself also
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Patty-sorry you're still in the hospital and hope they figure out why this keeps happening real soon.
Lynne-so glad you're husband is home and good luck making more great meals for him-the magic bullet is great to have for this!
Dee -good luck on your tests.
I too was happy to get my port out-as it was a sign of my BC. But, now that I have MBC I realize that it would have been better to keep it in!
Couldn't sleep last night. I have my scans today and am a nervous wreck
Good day to all!
Babs
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Babs, best of luck with your scans today. I'll be there with you, holding your hand in spirit and sending all of my positive energy.
Deanna, that is a significant drop in tm's for sure and I'm sending positive thoughts that it is reflected on your scans. Hoping you won't have to wait too long for results.
Patty, my thyroid is also low and there are alot if women with thryoid issues who also have breast cancer, I am sure there must be a link.
Dee, best of luck with all your labs today.
Hugs to all, Annie
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Babs good luck on your scans today , I know the whole thing is so anxiety ridden it's horrible. Waiting for the scan then waiting for the results. I try and tell myself if I'm gonna fight this war than I need to know everything. Helps a bit otherwise keeping busy. Big hug
Deanna I hope you aren't sitting at home going crazy like I was last week. The waiting is the worse, the TMs are a good sign . We are all routing for you.
Dee good luck on your lab work. Thinking I need to ask about this one too. Wanted to ask you does your oncologist go through the scans and such with you. Heading this morning to the records office to get all my info too many questions that haven't been addressed.
Patty I totally agree with Deanna your docs sound like they are needing a swift kick or at least a push to find some answers. You must be so tired of this. We are all there with you crowding into your hospital space chattering and telling stories, laughing and being loud. Can you picture it? I'm so hoping they find an answer for this soon and get you home.
Linda it's been one of those aweful weeks. The ones where you feel so sorry for yourself all you do is cry. The ones where it's so hard to find any hope or positivity anywhere. That's what the last few days have been like. Bone scan tomorrow then I get to wait for the results on that one. Been especially hard on my children . Being that they are 21 17 and 17 I want them to know how things are but I don't want to wreck their lives with this crap. So I feel guilty all the time. I need some hope Lulubee you give me hope, Terre you give me hope all of you ladies give me hope. You ladies are the only ones who get it and who I trust. You have to love the ol internet eh?
I wish everybody great scans and luck on everything. Welcome to all the new ladies , it's hard but we are strong together.
Wendy
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babs believing for your scans to come back normal
Wendy. Yallcome on I'll let y'all corner my Dr and then party in the room
Annie. I wonder if there has ever been research about BC and thyroid
I just got back in room from brain MRI. Their new guess is brain mets. Said uncontrollable vomiting is a !major sign. I am NOT even giving this any thought. I know it's not so.
Hugs to all
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No, no, no, Patty! That's ridiculous. If it was anything like that, I don't know how you would have those long stretches in between episodes! Clearly I'm not a doc, but that makes no sense to me. Plus I think you would be having other issues. Grrrrrrr for them even putting you through that. It sounds like they are grasping in the dark, but of course I'm also praying this quickly proves to be the wild goose chase it sounds like it is.
Still not caught up yet on what I missed (sorry to the newbies especially, who I want to get to know), but had to wish Babs calming thoughts and good results today! I'll be thinking of you and praying all goes smoothly.
Wendy, my heart goes out to you. Now I really have to go back and read exactly what you posted earlier, especially b'cuz I am so leery about the possibility of what my onc once called "an overly aggressive analysis" when a CT report stated progression, yet it was evident to her based on my lack of pain and TMs that it was actually healing. I mean sometimes our symptoms or lack thereof really have to be taken into the big picture. But no doubt you are down right now, so I'm sending you an extra hug and healing prayers. And if it is progression, remember -- this is a marathon, not a race, and an adjustment in meds, if you need it, can turn things around in a flash. More later after I catch up on the pages I've missed. In the meantime, hugs to all as we head into a new week! Deanna
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Ok joke fir the day : an elderly lady had been depressed and seeing a counselor named don Over the years they became very close snd she even had his cell #. One night she calls and said she wants to end this life after such a hard tine. She wanted to know where she could shoot herself thst would guarantee death. Don refused to tell her but after msny many late night calls he finally decides she is gonna do it with or without his help don said go to your left nipple and drop down about 2". Point gun there and shoot. Well thd next day her daughter calls don and asks why he told her mom to shoot herself jn the knee
Lol
Hope you got a laugh or smile
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Patty it may sound crazy, but I just finished reading a book by Sean Manning, he wrote about the loss of his mother, terrific heartfelt book i thought. Things that need doing, anyway his mother was vomiting sometimes all day sometimes not foe days on end, they finally figured out in her case it was Gastroparesis (some kind of paralysis from the stomach) - JUST A THOUGHT!!! just so coincidental, wanna ck it out??http://www.medicinenet.com/gastroparesis/article.h... this is a link i found explaining it, even Gerd could do that, did they ever do these types of tests on you??
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Patty you got ME rolling!!!!!!!!!!!! LOve it!!!!!!!
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Lynne of course that's how the best recipes come about!! My family knows already to savor whatever they are eating, because it's a ONE time affair.! Listen between the flowers and that sweetiepie what else makes the world go around??
Deanna hold on!
Babs best on ur scans!! A friend of mine that had a hard time seeing her grandchildren, told me she would always take pictures with them, and then after awhile make a small album so they could keep till they see her again.
Dee hope the labs come back just fine.
Wendy agh for those days. I have too many of those. I really don't care, we are always trying to protect those we love, my daughter tells me what she hates the most, is to know that I know, what can we do about that?
Bosco dear, hold on!! Hope you get out of there real soon! At least they working for you, and trying different things.
LindaE, Dani so did not wanna see the place if she does not have to, now that she is taking the pills and going for BT closer to home, she got them to deliver the Xgeva to her, and she does it herself. Yep.
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oK so here's another update. It's almost amusing!
I was rushed in Thursday week ago - guess I should have known after some episodes in Hawaii something was up but falling into a psychotic state wasn't on my expectation list - maybe that's why they have asked me twice if I want to see a psychiatrist - I'd rather stick with you ladies. Anyway that only lasted 24 hours. RT all last week then new drugs this week except I seem to be caught in the middle between by brilliant MO who is willing to think outside the box and the doctors/nurses in the hospital who are v cautious. The hospital monitor my bloods and refuse to give me treatment if the bloods aren't perfect unlike MO. They keep saying I need more fluids and having me do nothing during the day then pumping me full of magnesium or phosphate overnight which keeps me awake. My blood pressure rises and they say I can't have drugs cause it's too high to transfuse blood, which I need first. it's too high cause I've had too much fluid overnight and so we go round in circles.
So Sunday night MO arrives and says he can give drugs despite the bloods - we have to get started. AND THE NURSES REFUSE THIS MORNING! But won't tell me why apart from BP too high even though they have brought in cardiologist last week. They decided Sunday night after MO had gone to give me 12 hours of fluid transfusion (saline) last night but wouldn't start til 9pm so I was awake most of the night with a pump machine - and they wonder why I am cross and anxious in the morning when they won't give me any info and so I sleep in the morning. I effectually got a response from doctors at 5.30pm - a wasted day again. MO furious as he has told them they have to tell me what is going on. At least the cardiologist and MO now seem to have agreed a plan and TOLD me. Guess what - next BP dropped 20 points and drug treatment could go ahead ... if they had ordered it. Hoping BP will remain low tomorrow and we can start to get on w the real deal. MO wants me out of hospital and so do I. Son getting v anxious.
At least a local priest drops in to cheer me up (20 years ago we were next door neighbours but I had lost touch until I bumped into him in one of the local hospitals -Marylebone has many in the Harley St Area and I must have stayed in all of them!).
Sorry for venting and thank you all for support - I hope to keep up better once I have escaped...
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I'm almost embarrassed to pop back on here when I'm still catching up on the 3 days of stuff I missed, but just had to share that my UCLA onc just emailed me scan results and her overall improved impression. There were a couple of issues mentioned on each report -- particularly continued height loss by 50% for T8 and T9 and the concern about pathological fractures to same -- which I swear I suddenly feel more prominently as I'm sitting here, which is totally ridiculous! But all in all the CT showed sclerotic changes which are being called healing, and the bone scan showed less prominent tracer activity than last time. Thank you, Lord! And thank you for the prayers and support. I promise I won't be back again until I catch up and can offer more support! Deanna
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Wow, Bosco, just catching up with you and what a wild ride you've had. I hope you break out of there soon and let the recovery begin. Thinking of you!
Wonderful news, Deanna, and may it continue. You're such a great contributor to this and the Ibrance thread... thank you, thank you!
Best to everyone...
Rose
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Deanna big happy dance!! Hugs!!
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Patty loved the joke. Hope you get out soon!!
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Bosco- sorry you are going through this. Hoping the treatment goes well!! So frustrating.
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deanns - Hooray !!!! Doing a happy dance for you.
Bosco. I totally understand. I hate being in the hospital on weekends ( well anytime really ). Hospital won't give pain or nausea meds due to low blood pressure like 70\30. Mo says nothing to worry about. It's normal for me. I have a DNR on file and request comfort care ( meaning comfort over possible life loss ) if it was the first time I would be more understanding but it's nearly everytime. Surely hospital can see all the records from past visits and mo's demand for me to receive those meds. The problem is mo is not allowed to admit patients only the hospitality can. So they battle it out whikr I lay crying from pain and throwing up. Wth????
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Oh Bosco, good thing you're on top of things asking the right questions!
Patty - love your little joke!
When I was in the hospital for a rod insertion in femur, one of the nurses refused to give me the good stuff for pain, only Tylenols and said, don't go thinking you'll have pain meds when you get home. Walked out of there with scripts galore. Wonder where those meds went to... She also refused to give pain meds to the other pt in my room.
Deanna - doing a happy dance with and for you!
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Okay... finally have a few minutes to catch up on all I've missed.
First, DecisionFreak... I'm so sorry about your Mom, Anne's, recurrence. Is she hospitalized in the US? That can make a huge difference, I would think, especially if she isn't, re. things like the use of Xgeva. OTOH, I wonder how much of their reluctance to load her up with drugs is due to her age -- which could be a valid concern, especially if she has any pre-existing conditions. But then missing the Paxil-Tamoxifen interaction thing sounds like a huge mistake for an onc to make. So considering everything together, I see why you are concerned and questioning her care. Since it's very hard to second guess the care someone else is getting -- especially since none of us are docs -- I would just tell you what I often tell others, which is... assuming she's in the US, if it's at all possible, get a second opinion on her tx from an NCI-designated cancer center. These are the biggest and the best teaching university hospitals in the country and, as such, see far more breast cancer, so will have the most experience with subgroups, such as those in your Mother's age bracket. They are also the ones doing the research and teaching tomorrow's docs, so absolutely have to be up on the latest, which many local hospitals and oncs, sadly, may not always be. It's true you can find totally competent medical care elsewhere, but not always. So that's my firm advice -- if at all possible, get a second opinion at one of these places. http://www.cancer.gov/research/nci-role/cancer-cen...
Bail, welcome! Please tell us more about the Keytruda trial you're in!
Dee, it's great to see that Ibrance is in-line for approval in Canada. Marilyn, Lynwood, and I (as well as others here) are all on it, and, thankfully, the 3 of us have all come up with relatively stable scans this time around. Of course, it's a very new drug, so we don't know everything about it, and some women just don't seem to respond as well to it. But for some of us, it does seem a bit like a wonder drug at the moment. So hooray that you will soon have access to it!
Such an adorable photo of Mac, Rachel! And the kitty pix Terre posted (the black one in the bowl) is a classic and made me smile.
Susan (Ninja), not sure if I welcomed you earlier, but good luck with your first RT tomorrow. And I hope having the fluid drained from your lung has been a big help as well.
I'm just up to page 400. Gonna stop here and continue reading forward, rather than wait and post a book!
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Bosch, It is bad enough to be in the hospital without having to do battle to get the treatment you need. I hope you are sprung from that place soon. If not, our Gang of IVs led by Wendy will fly to England and straighten out those nurses after we take care of Patty's situation. I hope things get back on track for you and that you are home soon. Btw, there is no reason for an apology. Vent as much as you want. We are here for you, and we understand.
Patty, WTH indeed! Are they grasping at straws looking for an explanations? Needless to say, we all hope and pray you get good news about the brain MRI. Did they give you any idea about when to expect results? Completely changing the subject, I loved your joke.
Deanna, Woohoo and happy dance for your scan results. Don't worry about trying to catch up. Many of us have given up on that because this thread is so active. Just go forward with it. I always love to hear good news, and I don't care about how many posts have been left unread. Feel free to spread the news.
Linda, Your story about pain meds makes me wonder if that nurse had a little business going on the side. My experience with my husband was that they were always trying to give him pain meds when he didn't need or want them. He kept refusing, telling them he had no pain, and they kept asking anyway. It was pretty funny. The conversation always went. "How would you rate your pain on scale of 1to 10?" "I have no pain and have had no pain for days." "Okay, I have your pain medication." Crazy.
Babs, I hope your scans gonwell I am holding your hand.
Hi to everyone.
Lynne
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Omg Deana you made me happy and I didn't think that possible anymore with the way I'm feeling. So happy for you maybe one day I will get there to. But for now let's celebrate your result and hope it stays stable for the next twenty year. I used to be called the ultimate optimist need to find that part of me again. Doing my happy dance though right now for you.
Wendy
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DecisionFreak, I just read ahead and see that my advice about a second opinion is pretty worthless, in view of where you live. But I also seem to recall that there are NCI places that offer long distance consultations. Not sure if Johns Hopkins is one of them, but I think it is. Anyway, depending on where you are in the US, perhaps a call to your closest one would make a contact and start a dialogue that could be helpful either directly, or via putting your Mom's current onc in touch with the NCI onc? Whomever you reach out to will, of course, need your Mom's records. But it might be worth a try. Also, from what I've read, while very scary, mets to the skull are still bone mets, and hopefully Xgeva would be helpful. I would certainly try to pin down her doc on why giving her that is an issue -- although you may have touched on that earlier and I just missed it.
Maria_Spain, welcome! I'm sorry about your Mom's situation, but glad her neuropathy is better. I'm not entirely sure who you were addressing re. the neuropathy (sorry, probably missed something earlier), but when I started to get that during chemo, I found that taking high dose B vitamins made a noticeable difference. I don't recall which one was especially recommended -- either B1 or B2, I think -- but I'm sure you can pull up that info on-line. Plus here's a link from Dr. Julian Whitaker with some additional supplement suggestions probably worth trying if neuropathy is an issue. http://www.drwhitaker.com/supplement-treatments-fo...
Lynne, how is your hubby doing today? Prayers for increased strength for him and a steady return to normalcy (such as it is with mbc) for you both! And I'm still smiling at that adorable bedhead picture of your granddaughter!
Patty, I think MomATT gave you really excellent advice. I, too, think there's something going on that they are not quite i.d.'ing, and the closest I've come to it was that article I'd sent you on E coli (I think was it), whose symptoms sounded very much like what you've been experiencing off and on all these months, although I don't know if that type of bacteria can go into remission or dormancy and reappear. But seriously, Patty, please ask your docs about it, as well as the possibility MomATT mentioned.
Bosco! Ohmygosh, what an ordeal you've been having. You know, the confusion stuff sounds very much like an episode Hindsfeet recently posted on FB about having. If you're on FB, PM me and I can tell you how to find that. Otherwise, if she's up to it, I'll ask her to stop by and share her story here. It was a revelation to me about how serious the lack of magnesium (I think that's what hers was) can be and the severe delusions it can cause. Anyway, fingers crossed that you will soon get the tx your onc wants you on, and I just have to believe that maybe the prudence of the hospital staff will turn out to be in your best interest -- as frustrating as it seems right now.
Linda, I was glad to see your mention of adjusting well to single life. I'm sure it's had its ups and downs, but glad to know you're doing well in spite of that nasty curveball you were thrown a few months back.
Wendy, I hope further testing and comparing apples to apples shows slightly different results than you've thus far been told. As I said earlier and still lean towards after catching up on your recent comments, the report you've gotten just doesn't jibe with how well you seem to be doing. If I had read my scan reports on my own, I would have been quite upset because I would have focused on a few negative things in each one which evidently my onc doesn't think are the true essence of how I'm doing. So I'm just hoping and praying that's your situation -- a difference in the information they compared that resulted in focusing on the wrong things and thus a not entirely accurate assessment.
Hugs to anyone not individually mentioned! Happy to see everyone's posts, and missing those who haven't posted in the past few days...
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Thank you all for your continued support, positive vibes, and for always being there for me! You get it-which someone not going through this can't really fathom what we go through.
Patty I loved your joke-the woman could have been my grandma-her boobs almost hit the floor. She was so big that she had to have special bras made. And me, I have small A cups!!! I'm hoping you get the heck out of the hospital soon and that it turns out to be something easy to deal with.
Wendy we all have bad, sad,mad days in this journey. It's one crazy ride!!! Good luck on your bone scan tomorrow-remember, we're all there with you!
Bosch-Being in the hospital is so frustrating. I love how they wake you up to ask how you're sleeping. It is no place to rest so I'm hoping you get out of there soon!
Deanna-I'm so happy for you! Do a happy dance. And so glad you broke in to give us the good news! Good news makes us all happy and gives us the hope we need to push on and fight this stupid MBC.
The scans today were easy-just tiring. Now the crummy waiting begins. But, I'm a true believer of the squeaky wheel theory so I've already called the MO office and told them I was told they'd have the results later today (which is a half lie-they said it would be done but not read until the AM) So, I'll nudge again tomorrow AM.
And, I don't know how I'd get through all of this if I didn't have my BC sisters in this journey with me.
Thank you all again,
Babs
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i just now am reading this and what mammatt said and the mo just left. Darn will catch him tomorrow.
Actually kinda ticked off at mo anyway. He came into the room and dh was here. We talked to him about quality vs qty of life and I just don't have an quality. I am pretty much on the couch or in the recliner. Not a life at all. Have been considering for awhile to stop tx. Mo tsays whatever I decide is my decision but he personally would like to see me not to give up so soon. Lots of other tx available. And although we are not going to cure it we can reach Ned or stable ( last scans were stable except one spot ). Which we already understood. I wanted to know the process if I qui tx will I still see mo ? Will it be hospice instead ? Even though he can't \ won't agree less then a year to live ( that's good anyway ) I thought conversation was going well. So mo is talking and steadily walking to door. He is still talking as e walked out . huh? Wth ? Where did he go ? Thought he was coming right back but nurse said us gone. I have no idea what happened . he is a very young Dr and his face was flushed and he was talking superfast , which isn't his norm. Dh thinks he just it uncomfortable talking about death and I am just not sure. Def gonna corner him about it tomorrow even if I have to stand in the doorway. I don't need a mo more anxious then me.
Anyway feeling better this evening and I got some food to stay down.
Hugs
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babs. We must have posted at the same time. Hoping for quick , good results from scans.
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Momallthe-That was a great suggestion. I do take pictures every time I see the girls. Now I should document it for them by putting them in a book.
They are soon cute!!!!
Thanks for the idea
Babs
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I've completed two cycles of xeloda and will start the third in a few days. The pain in my spine has been getting worse. When I asked my oncologist whether that is an indication that xeloda is not working for me, she said not necessarily - that chemo works well in attacking cancer systemically, but it is harder for chemo to get at cancer deep in the bones. What?!! If that is the case, how does xeloda (or any chemo for that matter) keep cancer from spreading further with bone mets? I'm so confused
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