Bone Mets Thread
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I also have my onc order the scan with no oral contrast.
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My two cents regarding scans...just went to my monthly support group last night. An oncology nurse runs the group and while we were going around the room, she stressed that ANY contrast medium has its risks. They are very hard on the kidneys. Before you have any contrast scan, be sure to drink lots of water (or other clear fluids) the day before, the day of the scan, and the day after to help flush the medium out of your system. In most instances they HAVE to use the contrast medium so they can see the structures and their abnormalities (lytic lesions, tumors, spots, etc.) more clearly and be able to measure them with some accuracy.
Of course, a scan is only as good as the person interpreting it. Us St IV gals will have to have scans for the rest of our lives. There is concern about all the radiation, too. Those of us who have scans every three months have to be particularly vigilant about any other symptoms that might crop up because excessive radiation can cause new cancers.
Gees, what a nightmare!!
Lita
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Hi Ladies,
I'm new to this thread as I was recently diagnosed with bone mets in my spine (4 spots) and pelvis. Its been a crazy rollercoaster, as I'm sure you all know. When I was diagnosed with BC three years ago, I had an estrogen + tumor in my left breast and a her2neu+ in my right one, which was too small to need treatment (so we thought), so we don't know which one spread. I had a ct led biopsy last week but apparently there wasn't enough tissue to test for both, so back again I go for another one next week. I think that news crushed me almost as hard as the call that my tumor markers were up. I am so grateful this thread is here and that I have a place to go for support and questions. My question for you tonight is how you are managing the pain. Before I found out about my recurrence I was in excruciating pain and went on a round of prednisone that seems to be wearing off. My back doctor offered me any painkiller I wanted but I'm not a fan of heavy duty painkillers and I can't take ibuprofen until after my biopsy next week. What do you take for the pain? Does the pain go away after you start treatment? So far I've stopped tamo and started xgeva a week ago.
Also, in scanning through the board (I'd stayed away from the computer altogether until tonight), I saw how many of you have young children. I do too, a 7 year old and a 9 year old. We were very vague with information the first time around, but my 9 year old son is so observant that I worried he'd catch on and fret without talking to us, so we told them tonight. Not a ton of details, but used the word cancer which we never did before. It was so hard, and I have no idea what the ramifications will be, but am happy to share what happens next with them. All day I worried I was about to steal their childhood away from them with one conversation, but they took it in stride and I think they are ok.
Thank you so much and have a good night
Corinne
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girlwithacurl - I am sorry you are going through this. If you don't want to take painkillers this week, try acupuncture. I had a friend who "blames" acupuncture on delaying the diagnosis of her cancer a long time because the acupuncture managed the pain so well for so long. She ended up with a tumor the size of a lemon in her kidney jammed up against her spine ... It's been helping me with the joint pain associated with hormone suppression, a lot.
I have two kids 10 and 13, 9 and 12 at the time of diagnosis. Pretty much the minute I was diagnosed, I told them I had cancer, it could kill me but it might not for a long time. I've answered every question truthfully and simply. It takes as long for them to digest it as it does you, so I wouldn't expect to get the conversation done in a day. The conversation has continued in bits for the whole 9 months since I've been diagnosed. They are way more comfortable know what is going on and they feel respected. We've done quite a bit of planning and changes to the way we live, together, so things go well if I die. They feel part of the plan, they know what is going to happen in the worst case. Then we go ahead and live the best case.
IMO, this is the ultimate parenting opportunity. There is not much I can do to help them through this after I die, so I want them as involved and engaged in this now when I can talk to them ... It seems complicated, but, taken one step at a time, its been a pretty simple, straight forward conversation that has helped me as much as it has helped them. Kids are very smart.
In fact, I am doing pretty well. I expect you will too as bone mets are manageable. The most important thing is to aggressively get on top of the pain. Ibuprofen and acupuncture might get you through the week, but medium and long term you need the pain gone. Do not rest until you get there. I believe that is what rads and other local treatments are for. Keep pushing on these threads for how people managed the pain.
We're all in it to win it here. Ignore the statistics as they are changing and you were never a statistic to begin with.
>Z<
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Girlwitha curl, welcome but sorry you have to be here. As far as pain control, I take Tramadol, stronger then Advil but not as strong as Percocet or other narcotics. I work full time and did not want heavy narcotics making me feel dopey or drowsy. My pain greatly improved as I began my treatment and the mets got under control. The pain I have now is not mets pain, just stiffness and aches from the treatment side effects. My children are grown so I don't have much advise there, only to say that I have always told them that I would never lie to them about my Cancer.
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Girlwithacurl,
Another welcome here. And another virtual hug.
My worst pain has been helped by rads. Otherwise, I've taken (very rarely) hydrocodone. My Mets are all bone and my pain so far has been lumbar, left femur and iliac, and now T3. The one thing I have learned after pain putting me in the hospital twice, is to not let it get ahead of you. I just finished 10 treatments for the iliac and T3 areas, but didn't have to go to the hospital this time ! I think I'm learning to communicate with my RO better. (I've been at this mbc stuff for 3 years now)
Best wishes and support to you and your family.
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For those looking to manage pain and not feel out of control or doped up, have you asked for a 3 Day Transdermal Fentanyl pain patch? They deliver continuous pain management without the pain spikes. I find them wonderful, and they also don't interfere with the Morphine ER or IR that I also take. Note that over time, with all three pain meds, your tolerance increases and you will have to go up in dose. But Fentanyl runs as small as 7.5mcg, so you can start small and work up. Most docs start at 12.5 or 25 mcg. Good luck!
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Hi Everyone!
Attended a 5K walk/run today for our local breast care center to raise money for women who can't afford mammograms. I sure don't like the whole pink thing, but we raised a lot of money. I had all of you and my mom and sister who have passed from mbc in my heart today. Lots of people asked me what mbc was. One of the survivors is a 37 year old woman who had us all in tears as she spoke about mbc.
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Good for you, Linda!
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Guys I miss you all so much. As you know, i have been trying to catch it all, before it falls apart. We are dealing now with Brain mets, and skull mets, tomorrow after much digging and on our own, (no recommendation) Dani has an appointment with Neuro Onco, to sort out, surgery or Rads. She just had rads to the cerebellum, but there is much more going on. So it's been overwhelming.
But I did wanna catch up on all of our oldies, and in the interim SO many new ladies showed up. So I did write a bit. And of course, I will not have addressed someone, pls forgive me.
Babs I wrote to you on the other thread, but I could say it a million times, IT ROTS. BIG TIME!! Trully insane. Wish you the best, hope to hear good news soon.
Patty sweetie, sepsis from what? UTI? How are you doing now?Patty, Macrobid every day for prophylactic purposes, is it a possibility? I know many ppl that are taking this therapy.
Chelle your concerns are so real??? All I could say is that surgeons in NYC for Dani, were adamant she does not need MX. We will never know if that did it, or it would not matter. Once she did have mets, they wanted oophorectomy HX, asap. Hmm, maybe should have been done earlier. Tamoxifen did nothing for her. She was very very young, so that may have obscured their and our decision. But there is a mantra out there, that MX don't necessarily save lives.
Amy so sorry for this pain, but glad that you got right onto it.
Linda, so sorry I was awol and not there to hold your hand. But I am. Thx for your input on the thyroid, will prob know more tom! You knew all along it was progression, so glad that they checked it out, I know in Canada it's not so easy to get care.
Lynne that is just so wonderful, for you to have some time off. What a year it has been, you right! Hope you rebound real fast, have a grand time. And meeting these ladies, wow that must have been awesome!!
Z wow, I've respected you since day one. You are one terrific lady. And now reading your so real story, wow. And you are absolutely on the button, and you saved your whole family, by saving yourself. Kudos to you. I wish I could give you this big hug!!
Carol how you are holding up?
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Aurora, heard a lot about Xeloda, it helped a whole lot of ppl.I wanted so much Dani be put on it, I am still gonna ask this week.
Mary oh, so sorry. Did you have symptoms? Reading your post I am really freaking out, bcs Dani has had stuff for so long, and some are bulging our in the skull, and they are still taking their time. They were concerned about her losing her hair, in a bad spot. REALLY?? The first visit, RO said we could wait, 6 wks later when it got worse, I said NO waiting, she's got a gorgeous wig, and they were still taking their time. They are feeling sorry for her, or also, I am thinking there is so many that they don't feel it will help. Mary you are not alone, that's for sure! And check in to the Brain thread, they are so nice there too.
Kaption so much anxiety. The truth be said she may be thinking TM's are not so precise always. At least she will be ordering the Pet/CT. Re; the skull mets. I wish I knew. I kept asking visit after visit, if it meant that Dani had Brain mets, she had innumerable skull mets, they kept telling me know. Then one day, they wrote Brain mets. And then now, she does have it in the brain. But I still don't know, backwhen, the surgeon told me that the skull mets, don't mean they will permeate the brain, you know what I think he is wrong. It eventually does, if not treated. But then also, they did not want to treat it, bcs they were so many. Complicated. Kaption and the link you sent is very interesting. Dani did change from HER2- to HER2+
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Jen hope you feeling better soon. And hopefully you will get the answers you need to do the right thing.
Cat yep this is a very warm place to discuss all issues. You seem to have things under control. Wish you the best.
CJRT why don't they just do PET/CT from the head down, they are always playing with fire, our fire!!
Gracie, I know it sound cliché. But I am only the MOM and I could tell you there is not a second that I don't think about it. Our whole lives, her siblings and us, (she did not tell anyone ever)m revolve all around this. It's been very aggressive and there is always something going on with her. I can't even believe it if I start thinking about it. But, know, that we do laugh, cry, listen to music.. It's extremely tough you are right, but you are not alone. Maybe you could take something to help you with anxiety? I don't mean it in a bad way, there was a time, I was on Clonazepam, it made me shaky, so I shook it off. But I do need for sleep, bcs otherwise my mind wonders a whole night, and I am wreck. You could try Yoga, my daughter does it, and she loves it. Warm hugs. It really is a dreadful monster.
Lita we didn't bump into each other yet here. WOW, I did not realize you were out of the gate. It's just too much!!! I am just reading what you wrote, = Dani's mets were discovered bcs I insisted she sees an ortho. Both her Surgeon, and MO dismissed her pain as nothing, without even sending her for any type of scans. The ortho had a heart attack, when he saw this young woman just shy of 26 with mets in her bones. She was dx just short of 2 yrs b4 with BC. So they should have been with their antennas up!! And what happened to you, these ppl should not have MD after their names. So disgusting. But why didn't the ER send you for scans? How could they let you go out w so muh pain?
Candy listen, what do we know? But if you were to ask me, for someone with stage 3 having these symptoms, why would they be so blasé about it? Yes, Pet/CT are expensive, but it's not unheard of in your situation. Yes, please do look for an MO. And ask her to be thorough, why should you not get the help that you might need earlier than later.
Kimba sorry but they do have very hard SE's. Having said that, it is a fact also, that different people react differently, so for some it may not be as bad.
Kukocat what shall I say, welcome, wow so many new ladies. This is crazy. Just know, TM's are not 100% accurate, so it's just another way to check but it's not THE most important. Kukocat my daughter has 2 little girls, 10 and 8. She hasn't told them yet, believe it or not, she is been dealing with mets for awhile, she is in early 30's. It's a circus, and she literally does acrobatics with scan timings, and doctor's appointments, but she is too worried It would be too difficult for them. They are very attached to her. As Patty said, everyone sees what fits the family dynamics best.
Corine oh my gosh, I can't catch up. Someone NEW again??? What's up?? And younger and younger?? Corine, so sorry you had this news, but at least they caught it. Dilaudid, seems like a decent choice for pain killer. That's what worked for Dani. This is exactly what she was afraid of, stealing their childhood. It's a tough call.
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Deanna thanks for the picture, so nice to see you relax.
Wendy, I love that picture with your daughter. Glad things are working out. How funny that it may just be you are not getting THE treatment. Feel well.
Annie nice to hear from you. Waving back.
Jsmiller thanks for the gorgeous pictures.
Hugs to all! Let's hope for a good night sleep and tomorrow a better day!
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MomAllTheTime - I am so glad for the update. I'd like to know more about how Dani is doing. I think about you and Dani often. Hugs....
>Z<
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Momallthetime: You've been a busy woman writing back to everyone...God bless you, and please know that I pray for you and Dani every night. My daughter will be 23 next month, and I can't imagine her coming down w/Mr C at such a young age. It really upsets me that more and more women at younger and younger ages are be stricken by this miserable disease. IT'S NOT FAIR! IT SUCKS!!
I'm just now beginning to accept my stage and the prognosis...but I've got 20+ years on Dani. I just can't imagine being ill with two young kids to deal with. They probably know that their mom is pretty sick, but I agree that there's no need to scare the bejesus out of them right now. When the right time comes, it will come. How is Dani's energy? If I'm fatigued all the time (and I usually get 5-7 hrs sleep each night, but it's hard...sometimes I just CAN'T sleep), I can't imagine how it must be for her.
Yes, my doctor at Kaiser Permanente should NOT have an MD after her name, but at this point, it is what it is, as they say. The ER doctor simply said he wasn't authorized to order a scan. I guess that's just how it works at Kaiser.
Brain mets, on top of everything else, must be extremely scary. Is she having any physical or mental impairment because of it? How are they managing her pain? They started radiating my T3 vertebrae just in time. If they had waited any longer, I might have ended up paralyzed. I was already having trouble with weakness in my left leg, and the RO was concerned about that. I may have to have more rads depending on what the next scan shows. I agree, poor Dani, having to have to shuttle from one dr appt to another, and then go get scans, and then go get blood drawn and Tx....gees, it never ends. That's our way of life. There's no way you can work when it gets this far.
I HATE this new normal.
Lita
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Momall. I don't know how you manage to address all of us with all you have going on with Dani!!!! You're so right BC sucks!!!! I started my CMF chemo Thursday. It was ok. Felt a bit queasy and tired Hopefully that's the worst of it. I dread telling my dd of my progression I know she'll be devastated.
Babs
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Prayers for you and Dani, Momall!!
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momallthetime. Wishing mo\ro would get a move on and\or be honest with y'all keeping you ,Dani , and friends uplifted in prayers
Hope all is off to s good start today, like me
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All of my scan results are finally in (abdomen, pelvis, bones, brain, chest and lungs). More mentions of sclerotic bone sites than we've seen on my initial PET and bone scans, but the MO said they were probably already there and just too small to be picked up. The sites are in my vertebrae, spine, ribs, pelvis, collar bone and more I think. The happy news is that they are responding to the treatment I've had so far. I'll get scanned again in 3 months so that we can see if the Ibrance/Letrozole/Xgeva cocktail is working for me.
Overall the news is good for me right now. I'm humbly grateful for whatever it is that is keeping this in my bones so far. Between now and January, I'm going to focus on living the healthiest life I can and less on my daily focus on cancer. What a gift that will be if I can actually pull it off. I'm really wanting to focus more on exercise as I feel so much better when I'm routinely getting it in and want to feel strong going into my Hawaii trip at Christmas and my DIEP Flap recon in late January. I'm 10 months into this and finally feel like it's ok to think about the future.
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That's wonderful, Jennifer. Such good news and great attitude!
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Great news Jennifer! Enjoy your Christmas vacation in Hawaii! So important to have plans to look forward to and then enjoy living them out! It keeps the fact that you have a future in the present. You've got this
!Cathy
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Momall - I'm always anxiously waiting for updates from you. You are such a kind hearted gal to address us all with everything going on at your end. Truly amazing you are! I wish there was something, anything I could do for you and Dani. My progression may not be as bad as originally thought. Thanks to our "rotten" system that does not communicate/share between one hospital and the other, my recent bone scan was compared to one done in Dec 2015 instead of comparing to the one done in July at the trial hospital. Long story short, I picked up the films and they all went back to their drawing board. In Dec 2015 I had no fractures. I now have 3 fractures and what they thought was progression is now inflammation/flare from fractures. Waiting now for another CT scan to check other suspicious existing/new lesions. So much time wasted because of lack of communication and electronic tools. It's crazy. Holding your hand and Dani's as well. Lots of love and hugs to you both.
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Jen - I'm so happy to read your news! Enjoy that trip!
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Thank you all so much for your warm welcome. I read your responses and cried. Your kindness and wisdom help so much.
Zavroka--thank you for your strong words. I love the idea of not ever being a statistic.
Lynnwood--I have tramadol but haven't used it for this. I did use it as a step down from percoset after my surgery but all of those drugs make me a bit nauseous. Does it make you loopy? I was on the lupron aromasin cocktail for awhile a year ago and it was very hard on my joints. I might be on it again and not looking forward to it.
Kaption--my spine doctor is ready to recommend the rads if I need them. I never want to feel pain like that again!
akshelley--thanks, the patch is definitely a consideration.
Momallthetime--Thank you. This must be so hard for you as a mom. I couldn't function without the help of my mother, she is my rock. I definitely considered not telling my kids, as they are so young, and I think I could have gone on a good while keeping all of this from them. They did fine over the weekend after having found out, and my daughter came in to my bedroom the morning after asking "how is the cancer in your back doing today!?" in a very cheery way. But my son balked going to school this morning, saying he didn't feel good. I think facing the world was too much for him, so we will take it slow with him.
Jensgotthis--your news is inspiring!
Thanks again to you all.
Corinne
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lindae. Happy Thanksgiving. What are you doing today ? Well that's good new :. No progression. Fractures can be fixed. It stinks they got you so concerned when it was just miscommunication. Trust me, these same kind of mistakes are made here in USA. We gotta be our own advocates and stay on top of it.
Jen. Woohoo. !! Scan results are good. So happy you are planning for the future with a Hawaii trip.
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Jen, your scan results sound great! Enjoy your trip!
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Patty - Thank you. Just taking it easy today, I had a full house over the week-end enjoying my great nephew Raphael. Pic of him taken yesterday, 5 weeks old.
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Welcome, Corinne! I'm glad you're already finding comfort and support here!
Linda, what a cutie pie Raphael is! Those chubby cheeks and sweet baby smell have to be the best medicine!
MomATT, what can I say, except you and Dani are never far from my thoughts and prayers for a breakthrough in her tx. I'm also glad to know that you are getting a lot of support from the gals on the brain mets thread.
Happy dance for your scan results, Jen! So glad you can relax a bit and look forward to Hawaii in December.
kokocat, you are very wise to wait a bit to share your dx with your kids. A few months can make a huge difference is our own optimism and outlook -- vs. saying anything before you've gotten your own bearings after the initial shock. And I believe that being able to share optimism and hope with our kids is so important.
Tanny, interesting observations about the contrast meds. I've often wondered if the thick and rather disgusting Berry or Banana Smoothies UCLA uses were better than the clear stuff our local hospital uses. Thanks for clarifying that. And just fyi, I'm a big believer in Epsom salt baths to help get that stuff out of our systems.
Linda, great job on the 5K/walk. I didn't realize that you'd lost both your Mother and sister to mbc. I'm so sorry...
HIndsfeet, your story is nothing short of miraculous! Thanks for popping back to share it.
Babs, glad to know your first CMF infusion went well. How often will you get them?
Someone (Kaption?) a page or two back mentioned Tramadol, which made me think of a recent article I'll link here. Of course, with all these meds, we're often between a rock and a hard place re. needing them yet realizing their dangers. But this is possibly good information if your onc hasn't warned you about not mixing this one with alcohol, etc. http://www.itv.com/news/utv/update/2016-10-06/pres...
Hi, and happy new week to everyone not mentioned by name. Deanna
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lindae. Oh my. Adorable I miss holding a new baby. Love that sweet tender snuggles he has a lot of hair.
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This is my sink full of purple basil. I spent the night making pesto and not thinking about cancer.
I have started radiation to skull mets. I am so glad my RO jumped on it fast. I am thinking of you momallthetime and of Dani and wishing you find some answers. Linda thanks for taking us on your 5k. Jen I love your good news. Wishing you the best 2017. Party so happy you are home.
Peace to Everyone
Mary
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