Bone Mets Thread
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Carla, sorry your scan showed an increase in liver mets and that your tm's were rising but praying that Ibrance is the treatment that knocks those mets back and brings your tm's down. Thank you for sharing the info about the Claritin, good to know. Sending you hugs and healing, Annie
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Freebird, is the Claritin for the Xgeva or Zometa?
Leah
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I want to share something very enjoyable...I joined the Y last month and was finally able to attend my first group class - arthritis water aerobics. It's 45 minutes and in a warm pool, close to 90 degrees. It felt soooo great on my very stiff and sore left hip, I am hoping to go 4 to 5 days each week. I was clearly the youngest in the class but the ladies were wonderful and oh so welcoming. Anyway, after class officially ended I spent an additional 15 minutes in a resistance pool, like those lap pools with a strong current, walking against the current. It really felt like a great workout and tonight I'm feeling the benefits. I can't wait to go back, which are words uttered by me...NEVER!
If you have the opportunity to give it a try some time, I think those of you with bone pain might benefit.
Amy
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Stay 31 and txmom,
It's amazing how much we don't know about bc until it comes into our lives. When I was told I had DCIS and IDC my comment was "There's more than one type of breast cancer?" Little did I know that it was the tip of the iceberg for stuff I didn't know about bc. Family history, i.e.genetic connection, accounts for only a small percentage of bc cases. Eating well and exercise are good for everyone, but no promise of protection from bc. And the pink stuff? Not a fan at all and you'll find a sizable amount of anti-pink sentiment on bco.0 -
Hi all. I'm most active on the Starting Chemo in July 2015 thread, but have been lurking on this one for a while. I was dx with BC mid-June 2015 and after PET re-dx in late July Stage IV with small bone mets, one to left pelvis and one to lumbar vertebrae. I guess I've kinda been in denial because I'm not having any symptoms of bone mets, but now my MO wants to start me on Zometa. She wanted me to check in with my dentist and have x-rays because of the potential for osteonecrosis of the jaw which has now freaked out my dentist. I have both bottom wisdom teeth under the gums and they have never caused me any problems, but now suddenly my dentist thinks they need to come out and is trying to schedule a consult with an oral surgeon; she was never concerned about them before. I'm 99% certain I'm not having my wisdom teeth pulled because I see no reason if they don't bother me now and maybe never will; I don't need the additional trauma right now. I have my 4th chemo treatment on Thursday, but won't see the oral surgeon until Friday at the earliest, so MO has canceled Zometa for this week. Now I've got time to think and read and from what I've been reading I'm thinking maybe I'd be better off getting Xgeva instead of Zometa. Any of you experience the jaw SE with Zometa or have normal teeth proactively removed? I'm curious why some of your MOs chose Xgeva over Zometa? I need to ask many more questions of my MO. Thanks for any insight and wisdom you can provide and my best to you all!
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Hi and welcome bjsmiller,
Any of the bone strengtheners, xgeva, zometa, aredia, prolia etc., have ONJ as a potential se, especially if one has invasive dental work. It is a standard precaution to have patients get dental work done before starting these drugs. That being said, it is a low incidence side effect. I can't comment on the state of your wisdom teeth or say what you should do, but if your dentist is "freaked out" by this may I suggest that you consult another dentist who is familiar with problems associated with these drugs and won't make treatment decisions from a freaked out perspective.
When I was on bone strengtheners, I used Aredia, though my oncology practice now uses zometa. I'm not sure why one is chosen over another. BTW, I am in my 5th year of NED. I have never had any bone met symptoms. I am not in denial by any means, but I just take my meds and keep on living. All the best.0 -
hi bjsmiller. Welcome to the thread. I got ONJ with Zometa. Consult with an oral surgeon who understands ONJ. And get it resolved before you do Zometa. Once you have ONJ, it's for life and it's stunningly painful.
Good luck!
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Deanna, I hurt like that when I fractured t8, immediate pain relief with rhinoplasty, went back to work as a nurse 2 weeks after. My white count was 4on Friday and I was to start cycle 2 tomorrow, but my hubby has pneumonia and I have a huge sin infection, ill call tomorrow and see when he wants me to start 2nd cycle. Hope everyone has a good day. Marilyn
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Does anyone know how Patty is dping?
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Sara31 and bjsmiller - A warm welcome to both of you. bjsmiller, good advice from Karen and Terre. I had a dental check up before starting Aredia. My dentist would send me to a specialized oral surgeon should extensive work be done.
Amy - that sounds soooo soothing.
txmom - I texted Patty earlier this week. She says she's still feeling miserable and very tired. I asked if there was anything I could do to help to which she replied prayers for her family. It breaks my heart.
Annie - another scorcher today as well.
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Sarah31... I also have Infiltrative Lobular Carcinoma... was always very vigilant with self breast exams and mammograms. Lived a very healthy active life... heck I don't even sunbathe! Was completely surprised and shocked that there were cancers that could go undetected by mammogram. Lobular is a sneaky one... it definitely snuck up on me. The pink ribbon campaign is making women think that mammograms are enough to keep you cancer free. I get annoyed now every time I see one of those things now. I hope you find a treatment plan that works for you... I'm still in the waiting phase right now hoping that Ibrance is the magic formula.
Thanks for the bone broth recipe Leggo... going to give it a go. I also found a website where you can order it already made for those who don't have time to cook but want to give it a try: www.bonebroth.com It's a little pricey but just throwing it out there in case anyone is interested.
Yesterday I had a high energy day and thought I could do all of my own floors... sweeping, vacuuming, mopping... today my spine is saying: What the heck were you thinking???!!! It's a heating pad, motrin day for sure... won't be doing that again...
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LindaE thanks for the update. Prayers I can do.
Got my ultrasound results. Measurable shrinkage in the breast tumor but not by half. Lymphnodes stable not growing, not shrinking. Waiting for the bone scan.
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Leggo this is just so insane - so many young ppl, you do have a long road of many miraculous treatments to rely on. It's scary, insane and it sucks!! As I said many times b4 my daughter felt a lump while breastfeeding, GYNO refused checking into it, BCS she was to young 25, yep, he didn't even wanna consider it, we did our OWN testing, paying out of pocket, the rest IS history!! So tough! But we keep the "nothing is impossible" motto, and move forward. This is def a nice place for you to turn to. Regarding ppl don't understanding how one could have a lot of stuff and still look ok on the outside, THAT is a big reason she doesn't tell a/o about her status. Too much nonsense convo.
Xavo hope you are feeling better.
Terre - so nice to hear from you. UNTHINKABLE that a doc should show you the door at this age and time, he may not like it, but he tread in murky waters saying that to you. Too bad for his insecurities, shame ON the Onco. Trust me you do what you gotta do, that's what's propelling me, these docs would do the same if they were in our shoes.
Very interesting e/o opinion on the matter of 2nd opinion. Yesterday's visit to 2nd opinion BIGGIE doc in NYC wants to review reports, which I had all with me, dating back to last year(he is lucky I didn't bring my dishes!!), although I had been sending him emails of e/t, anyway he wants to "investigate". To add, she has something new on the surface in the sternum area, that her own Onco didn't wanna pay attention to, and THIS Onco says it should be biopsied. He wants to discuss it with current Onco. We both told him we want HIS opinion not what she thinks about it, he said he will be honest but he wants to talk to her. Prob wants to get to the nitty gritty, he will get back to us hopefully by Friday. We are gonna do it that's for sure, regardless what Onco says. And then he was surprised she was not on more stuff. Yep that's what you get when you get other opinions, fine by me. Tomorrow is the new Onco also in a major Hosp. I know they are more aggressive so we'll see what he says.
Bluefrog76 I got you, so sorry you have to join here. But it's a nice bunch of ladies here.
Tiffany, Sarah31 yep there is NO pink!! There you go. NO words, we could all get blindsided, but they do have a lot of good stuff out there.
Annie, nice to see you around.
I would like to ask of all of you great ladies, the places that you go for infusion, do you have privacy? In the place she is now she has privacy, if she were to make the changes to either one of the other 2 Oncos, there is NO privacy, and she hates that. It's a big issue for her. She won't chance her health bcs of it, BUT it bothers her. She doesn't like ppl lookg at her, and I know she doesn't want to see ppl feeling very bad.
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Having the stove on so long makes me nervous. What about bone broth in the crock pot slow cooker?
My oldest son cries and gets frustrated I'm so tired and some days stay in bed. He says I'm laying down and dieing and giving up. It feels so good to rest. I am so tired. Iv tried to explain I'm just taking care of myself. It is sad.
Scans tomorrow. New insurance is awesome! No need for prior authorization for scans and my xgeva has been approved for a year!
Intense pain in left arm and arm pit. I have mild lymphedema in this arm and brachial nerve damage. Still wonder what the scans will show.
JuSt need to rest and everybody is in denial I'm I'll!!!!
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Welcome, Sarah and bjsmiller!
Carla good luck with your Ibrance treatment!
txmom, happy for the good news and hope the bone scan also brings the good news!
Momall, thank you for your kind good wish. I also wondered why my second opinion BIGGIE doctor at Dana Farber wanted to talk to my onc. I hope that helps!
HopeFaith, your oldest son is very much worried and frustrated and saddened. It reminded me of my own dark feelings 25 years ago when my mother was dying from a very aggressive type of brain cancer. I was profoundly saddened and angry. I have kept seeing my mother recovering in my dreams until today. For some reason, my grief for my mother's death is stronger than for my own. The difference is that you will be around for a long long time. Let your son know it.
Hope everyone has little pain today!
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Hi All, Going to keep this short..... Fever, nausea, aches from Faslodex yesterday. Saw my neurosurgeon and he said tumors are progressing and only one is starting to press on the spinal cord. I've had radiation to T-8 to T-12 two separate times so radiation is out. Some of the vertebrae are collapsing more and I'm being referred for a special brace. Good news is the 12 screws and 2 -10 inch rods are stable. He wants to go back in and reinforce above and below those vertebrae. My last surgery was 10 hours long and he said this would be longer. That's his long range plan anyway. I just felt too nauseated to discuss much with him today. Darn. Best to all...know that I am thinking of all of you and reading the posts.
My new mottos is: Research not Ribbons.
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Thank xavo!
Oh Lindalou im so sorry!! I hope your able to sleep most of the day and feel better.
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Linda, I'm having some issues but hanging in. Thank you for asking. I hope you're feeling better today.
Mom, I know just how your daughter feels. I had my onc appointment yesterday. He asks how's the pain, I give some polite conversational answer and it usually ends there. Yesterday though, he made some remark about how amazed he is that patients with so much cancer don't experience more pain and I think because I had zero sleep, I kinda lost my shit. I asked him never to say that to a metastatic cancer patient, or at least me, ever again and that just because someone doesn't complain means absolutely nothing. We all know the limitations of treatment and pain control and if I did tell the truth, what would he realistically do about it anyway? Normally, I'm the good, respectful patient, but yesterday it just got to me. It was a horrible appointment and I've been thinking about it ever since. I don't quite know what to say when I face him (or the entire clinic staff because I'm sure they talk amongst themselves) again. In hindsight, I should have just kept my mouth shut, but I really couldn't deal or stand the thought of him thinking that life is remotely normal, how everyday is a struggle just to get out of bed. I'm sure I'll figure it out before my next appointment, eat some crow and life will go on, but it sure is weighing heavy on my mind. I'm embarrassed. He's a good man and I'm sure he was just concerned and he probably even knows how it really is, but ugh, the usual pretense between us was just too much yesterday. Anyway, I'm babbling but all this to say, I know where your daughter is coming from and I totally get that sometimes you're just to sick to care about the medical bullshit and sometimes it's just easier to say nothing. I should have listened to my inner voice to shut up, keep on keeping on. I've just created a problem and mental turmoil for myself and I really didn't need that.
Love and hugs to all who have to deal with the daily pain and sickness that this cancer bitch rains down on us.
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hfc So sorry you are feeling so tired. I do hate how this disease affects those around us.
Deanna how did your doctors visit go? I hope they have answers for your pain.
Bjsmiller Good question about xgeva vs Zometta. My mo doesnt seem to trust newer drugs. I dont think its about cost but going with what he knows and what he has seen work over time.
momallthetime I hope the second opinions bring some encouraging news. Privacy in the infusion room is an interesting issue. It did shock me in 2011 when I went through chemo. Now I only have infusions once a month and I have found ways to cope. I typically listen to audio books with headphones and get lost in my own head so I dont notice others and dont notice when others might notice me.
Chattykat I so relate to your post when the energy comes I just want to go, go, go. Then, of course, I pay for it. Taking on field trip volunteering with my sons 9 th grade class, and wonder if I will pay tomorrow. I imagine it will be worth it.
txmom good luck with your bone scan.
freebird I hope Ibrance gives you good results and good quality of life.
Sara welcome and so sorry you have to be here. There is a bco member bestbird who has a phamphlet she developed identifying all the treatment options. She is very generous with it. Just private message her.
Happy wednesday to all. Positive healing thoughts going out to Patty today.
Mary
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I can't believe how fast this thread had been moving in the past day! I just went back and made a few notes to try not to miss anyone. ChattyKat, excellent suggestion about seeing a cancer psychologist. And I just wanted to add for those who may not know, most larger cancer centers have psychologists on staff, and sometimes you can just grab them for a quick question or two -- at least that's been my experience, and I've always gotten such practical, helpful coping advice re. things that were bothering me. Auroaya, so sorry you're dealing with throat & esophagus pain. That sounds miserable, but it seems like everyone who goes through it eventually gets relief, so hang in there, and I'm praying your pain eases up very soon. Goldengirls, good luck to your Mom on Friday. And yes, I think mbc causes a lot of strange pain that comes and goes due to inflammation, healing flares and meds. So many days I'll wake up with a new pain that's gone in a few days, but then a new one appears. It's crazy, and I think drives my DH nuts. Sarah, not sure if anyone gave you the names of the other A/I's, but there's Anastrazole (Arimidex) and Aromasin, in addition to Femara (Letrazole). Also Faslodex (which I'm on now) is an injectable that isn't an A/I per se, but works a lot like one. Carla, you mentioned Ibrance. Are you on anything with Ibrance? Amy, love the pool advice. bjsmiller, Welcome! Not sure if someone said it above, but Xgeva (also known as Prolia) is the newest generation of bone building drugs. It also has the potential for ONJ, so you do need to be evaluated by an oral surgeon who can tell you if it's safe for you, or if your wisdom teeth could pose a future problem. Not sure where you're located, but you may need to go to a major university medical center to find a dentist/oral surgeon who is truly up on ONJ. I did. Marilyn, thank you for sharing your experience. I finally got ahold of the reports for my 7/31 CT and bone scan yesterday, and was relieved that there was no mention of a specific upper spine vertebrae being at risk. The only one they mentioned was L3, and I doubt the shoulder blade pain would be coming from it. So I still have my fingers crossed that this pain is an injury and not directly related to mets. Will give it another week or so before requesting an MRI if it doesn't ease up. Leggo, thank you for the recipe. And whoever gave the source to buy bone broth ready-made, thank you! I may look for it in one of our local nutrition stores. I'm not sure I could tolerate the cooking smell for that many hours, and it seems like it would permeate everything in the house. Dee, good luck with your infusion on Friday! Here's hoping it's much easier than past ones!
I texted Patty yesterday and am concerned not to have heard back from her yet. I'll text her again today, unless anyone else has a further update.
So my wbc recovered just as my UCLA onc predicted -- 1500 yesterday (vs. 900 6 days ago), so I'm on round #2 of Ibrance as of last night. My rbc's are still tanked (3.42), and strangely have gone even lower (from 3.5) in spite of reluctantly eating a bit of animal protein in the past week to ensure that my plant based eating wasn't part of the problem. HGBs fell too. But at least my WBC was up, thanks I'm sure to pumpkin seeds and molasses and some of the other food tips I've learned here.
Hope the format above isn't too hard to read. Just thought I'd try it to cut down on space. Hugs to all, especially if not specifically mentioned! Deanna
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Thank you, leggo, for the recipe. I will definitely try it. I love that you can use it as a base for just about any soup you might want to cook up. (Admittedly a little hot here for soup right now.
Oh Lindalou. So sorry about your current situation. Research not ribbons, for sure.
My heart goes out to all of you, all of us, coping with all of our treatments and uncertainties. This is a rough road that gets harder the longer we're on it, and it's different for each of us. Life is hard enough for many without this added on- but here it is. I marvel at the strong will to live and "keep on" from this group, but I also understand where it comes from. Without the love of and for our families, many of us would give up- or at least not try so hard. At least that's where I'm coming from.
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Leggo, yesterday must have been the day for bad onc visits..I had one too and it also involved pain issues! I have been taking Tramadol for pain for many years for bulging discs in my back, 100mg. When I asked my onc about pain management for when I go back to work ( I am a nurse with a very physical job) she told me to take Motrin! When I told her that I take Tramadol which already doesn't hold me for 8 hours, she actually lectured me that it's "not a good drug" for me since I "already take a lot of Cancer medicine". WTH!! I have extensive bone mets!! I agree with you leggo, just because we don't go in there moaning and crying in pain, does not mean that we dont have pain. I will just get the Tramadol from my primary doctor. Do not be embarrased for speaking up for yourself ! Regarding privacy in the infusion rooms, have not had chemo but do get my Xgeva shot in there. They have privacy curtains around each chair, some people use them and some don't. I recently accompanied a friend of mine to her first chemo in another facility and was shocked when the onc introduced her to another patient getting chemo and said " he has lung cancer like you." HIPPA Violation!!
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Momallthetime....I have a private room with a tv and room service for infusions.
So I watched my bone scan and my hip lit up which thats where my mets are. Will it always light up? Even if the cancer becomes necrotic? Just wondering. Thanks.
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Lynwood, believe me, standing up for myself has never been a problem. I just feel so stupid and ashamed that I took it out on such a kind man. I'm weighing whether I should send apology flowers.
Before I left the nurse said he wanted to talk to me some more but he was just too busy (which I know...he was so frazzled and had files up to the ceiling) and he will call me later. I guess that gives me a little more time to find the right words for being a bitch yesterday. Poor guy.....I feel so bad. I know his wife and she is a miserable, ungrateful bag. He likely went to work that day happy to get away from her and then I turn on him. Sheesh!0 -
leggo, we were writing at the same time earlier today. I'm glad you commented again on your onc appt, so that I could go back and see what I missed. It's interesting that you feel so bad about what you said because I don't perceive it at all as off base. What he said sounds very out of touch and demeaning of your situation to me. Of course, I wasn't there, and what you said may have come across as nastier than you're relaying to us here. But an onc commenting on how his mets patients have so little pain makes me want to cry. I mean if they truly don't get it, we're really sunk!
Arrrghhhh, why is it so hard for people to get that we might be out and about and trying to live life, but that doesn't mean we don't hurt or didn't need a dose of pain meds to get out or don't need to get home and put our feet up sooner than later. I am so sick of answering, "Fine," in response to how I'm doing. But if I say anything the least bit more truthful, like "Doing okay," or "Pretty good," or anything that I would think might spark a come back question about my health (as I did last night when I saw a lot of friends at a meeting), I just get smiles -- like no one really hears it or picks up on it. But our oncs -- wow -- they should know better!
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I totally agree with everything dlb823 wrote. We need to advocate for ourselves in every way.
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Seeing a cancer psychologist is a great idea! My psychiatrist is a cancer survivor, so she has a great understanding of what I'm going through. I have a appointment with a psychologist next week.
Txmom, I think there will always be some abnormal uptake in your hip due to the mets. The contrast goes anywhere that has some abnormality. When I was first diagnosed my bone scan showed "increased uptake in the left mandibular region due to underlying dental disease." I had a tooth going bad and had put off going to the dentist, I couldn't believe the bone scan picked it up!
Deanna, I know what you mean, I'm on vacation with my friends now and sometimes I need to take a break from the sun and fun. They say they understand what I'm going through, but it's not the same as living it everyday!
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leggo and lynwood
So sorry about your struggles with pain. It is striking the difference provider to provider. My MO ends every conversation with "Is there anything else you. need." One day I asked for sleeping meds and my MO asked lots of thoughtful questions and said. We can try sleeping pills but the problem seems to. be you are under medicating your pain. Now I leave pill bottle by my bed and if I am awake at 2 i take another pill. Having a treatment team I trust makes this so. much easier.
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TXmom - My mother's bone scans continue to show her mets even though many are healing and she's been stable for 18+ months. As they explained it, the bone scan will pick up most bone damage, be it osteoblastic mets, degenerative disease, etc.
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Deanna, yes, there was a lot more to it but me saying "what are you going to do about it anyway" was way out of line. He's been my onc for over twenty years. I got him when he had just started out, so we know each other really well. He certainly knows how we suffer and knows his limitations for helping....we've discussed it often and his frustration is worse than mine. I think what got the "misunderstanding ball" rolling, so to speak, was that yesterday was one of the few times in the last few years he saw me on crutches instead of in a wheel chair. I'm pretty sure I've mentioned that I have an underlying cancer condition that affects my balance and ability to walk. He, for that split second, probably forgot that I had my plasma exchange (the treatment for it), and made the assumption I had reduced pain because I wasn't in the stupid chair. I get a good week or two after the treatment. Anyhoo, his nurse called a little while ago and told me he hasn't forgotten about me and will call when they close today. Already apologized to her, but it doesn't mean much.....I don't care for her anyway.....LOL....the bitchiness is still there I guess
. I'll clear the air when he calls and hope that we can go on as normal. I genuinely care about him and frankly, don't want any bad feelings between us for several reasons, the most important being my life is in his hands and he's really good at what he does. I don't want him to pawn me off or give up on me. I have to remember to tell him I know he's not a wizard and he's doing everything he can with what he has to work with. What a shitty couple of days. And while I'm in my bitch mode, my frickin' phone won't let me type SHITTY. Do I offend you phone? Seriously, if I didn't need it so much it would have met the window today. Grrr.Hope you're pain has subsided a bit and your having a better day.
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