Bone Mets Thread
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Jen do you have pain from your bone mets? I was told you can only use this option twice on any given area so not to waste it. If you have chronic pain then I would say yes otherwise .... My oncologist won't get my tumour operated on. Might be a Canadian thing but the philosophy is horses are out the gate already and it would be very hard on my body what's right who knows eh? I would have to agree with Babs about the scan get one now as a baseline . Aren't you on some bone building medication as well took Canada nine months but I'm on something now better late than never..I guess.
Good luck with whatever you decide once your plan springs into action you will be much happier.
Amy I'm so happy your tooth issue are behind you, hopefully you are pain free now. Now you get to heal😄
Hallo to all the other wonderful woman in the thread. I wish you all a wonderful day.
Wend
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okay in my defence it's really early forgot Jen meant to write in radiation in there somewhere lol.
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Good morning all,
Debbie, a warm welcome to you but sorry for the reasons that bring you here.
Wendy - Awesome news! I'll be holding your hand in spirit tomorrow.
Amy - YAY on that tooth gone and you can still smile.
Jennifer - you certainly have good questions. I would have the bone scan as soon as feasible for baseline purposes. Is there any reason why you have not been given a bone strengthener yet? Are they waiting after chemo and/or surgery? It's hard to be patient especially the first few months following Stage V dx. Perhaps they want to see the results of chemo before discussing any other tx plan. Can't comment on recon as I had no surgery.
Annie - I hope Ortho appt goes well. I had a dry socket years ago when some wisdom teeth were pulled out. The pain was absolutely awful, it's more than 30 years ago and I still remember it.
Momall - waiting with you for Dany's markers and praying they go down.
Mary - sorry to hear about your Mom. How are you holding up?
I'm worried about Bosco. Has anyone heard from her?
Hugs all around
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Thank you LindaE!
Jennifer baseline seems important. You have very good and valid questions. Maybe what you need to do is get the message through to the doc that you are a person that wants to know what's going on with your status, treatment now and plan ahead, and you would appreciate if she would explain to you. Many docs have a patronizing way, like they know what they are doing, you just sit back and go for the ride. But many may genuinely think that the person does not want to know all details, so maybe you have to let your personality type show, and say want to participate in the thinking process also.
Also, please make sure to have all copies of the Blood tests you take all the time, copies of the reports and even copies of the scans. All. Right after you have it done. Either call the place where it was done and work with them, or get it from docs office. It's yours by law. You could just ask nicely, and they will know that YOU are one of those ppl that like to have your records straight. I do that with Dani's stuff always. And in mine life also. It has helped us a lot, for various reason, one reason for sure, when we wanted to go for a 2nd opinion, I did not need favors and wait for docs office to get it all together and send it to us, we had all records and off we went. I also write in a notebook conversations I have with her docs with dates, and when treatments start and when they are switched. It's a long trip, many tests along the way, I for one could not remember it all off hand.
Listen, we are not in the medical field but most of everyone here do take some form of bone strengthener, you would need estrogen blockage etc...You really need an in depth conversation, when they tell you to take something or not to take, best would be for you to understand why yes or why not. Also, there is a conversation about if there is a necessity to do mastectomy on stage IV patients, worth a discussion with doc, and surgeon and then a 2nd opinion. In Dani's case, doc did not recommend even in the beginning diagnosis, and certainly not when she was Stage IV. Of course, different strokes for different folks. She had 2 little girls, so she was told for estrogen purposes after tamoxifen did not work for her, she had a oophorectomy along w full Hystrectomy, with the advantage of having more choices in txs also. Not easy having hot flashes in the 20's, but she copes. There are many different ways to approach this, for sure listening to a 2nd opinion I think would make you feel more comfortable about your choices.
Ask away, if we could help than by any means, listen Dani has been at it for awhile now, and I have like 40 books under my bed and I am on this site still searching, so you get the picture huh... Warm hugs
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Hi all!
I'm afraid I've gotten behind again, with the garden & all taking my time, but I will catch up tomorrow when the rain is supposed to be back & I can catch up on my reading.
DH & I took a trip to the wild west coast yesterday, to Chesterman beach near Tofino. Walked the beach for a couple of hours getting our Vitamin D & some exercise. Took a picnic lunch & sat listening to the pound of the surf which is so relaxing, I know why people live here even though the threat of a tsunami is ever present. I am so thankful for living close enough to such a beautiful place which we can visit from time to time. Chesterman beach was named "the planet's best "wild and remote beach."
take care all, cheers, Dee
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Dee, that beach looks absolutely heavenly!!! What a stunning area you live in!
Welcome, Debie, although I'm so sorry you have reason to be here. I hope your onc appt goes/went well. It's hard in the beginning to reconcile a mets dx w/long term survival, but hopefully that's something we will all achieve, especially with new drugs like Ibrance and others that are in the pipeline. You'll see as you spend more time here that many women have been at this for a number of years -- some stable, others NED or NEAD. I hope you will quickly get to one of those levels of living with mbc. Here are a couple of other good threads geared to that:
https://community.breastcancer.org/forum/8/topics/...
https://community.breastcancer.org/forum/8/topics/...
I'm loving the photos of Charleston, Babs! Keep them coming!
Jen, I would maybe wait until chemo is over to do the bone scan. That way, you'll have a more definitive point from which to compare future bone scans -- not one that may have changed by the time you finish chemo. As far as recon surgeries, you are going to have multiple ones no matter how you approach it. I had Diep recon and needed another pretty lengthy surgery for symmetry. Implants require an exchange surgery. Unless things have changed much, I don't think immediate recon is going to totally eliminate the need for future surgeries, although they may not be as long, depending on what type you have, and you may just be happier having the major part done, as long as you're certain about your choice and how future txs, such as chest RT, might affect your choice. And I don't think you're overthinking anything. It's nice to know the game plan, especially if there are options, so that you can ask questions. I've always been told informed patients actually do better. Just try not to worry ahead of yourself, if that makes sense.
Hi to everyone else!
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Dee. Love the beach photos
Some pictures from today
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Sorry to have worried you. I'm still here! Have a scan on Monday and wanted to know results first. But the short answer is I am much better - could not have be much worse as I tore my port out in a fit - my poor husband.
All the RMOs (resident junior doctors) said I l looked great when I was discharged 10 days ago or so after a second weeks in hospital Have had 2 treatments since and no new side effects (I hesitate to say that after last time) but really just tired and wobbly legs. And all I think getting better or stabilising although who knows andI have a frighteningly long list of home drugs. More to follow next week. Thank you for caring.
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Hi all,
Came here to start reading but I have to post first. OMG Bosco, you tore your port out?? wow.... hope you are ok now. Did you scar your poor DH for life? ;-)
Babs, Love the pics! We've been all over the US, but never to Charleston. Thanks for posting.
BBL when I've caught up. cheers, Dee
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"Celebrating" my six month stage IV evaluation. I don't post very often because I don't feel I have a lot to offer but hopefully that will change as I gain experience. Today I had a meeting with my oncologist and had a mixed but overall quite good review of my scans from Monday. Good news is that there is still no visceral involvement, very good news indeed! The so-so news is that CT keeps picking up new skeletal lesions but they are not confirmed as active, i.e. they don't pick up dye on the bone scan and last time didn't show activity on PET. The beast is slumbering but is not dead nor gone. It's the best I can hope for and really is good news too but troublesome for me to wrap my brain around that change is still occurring but not confirmed as actual progression. I really want to hear NED, no evidence of disease or even remission or stability but those are not words uttered or written, yet.
That said, I am going off chemo for a while. It's not doing anything miraculous and it's making me feel really sick so why take it? By going off it, we can evaluate if it is having any impact on slowing down progression. I'm going to continue to get targeted therapies, via infusion, every three weeks, Herceptin & Perjeta. I am also going to start taking daily Arimidex, we don't know that it will be useful given my weird, ER negative, PR+ (50%) pathology but it's worth trying. If I don't like the side effects, I will discontinue it but I will give it at least 12 weeks to see if it is beneficial.
So continues life of a stage IV patient, metster, lifer, whatever you want to call it. Taking life in 12 week increments and re-evaluating. I hope I have lots of time to get used to it and be able to contribute to this thread.
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Babs, Your pictures are wonderful. It looks like you have been very busy while in Charleston. You must be having a great time.
Bosco, Wow, I don't know what to say. You really tore out your port? I am glad that you are doing better since your latest discharge from the hospital. I do hope you continue to do well and don't have to return. There are many of us who care about you. (((Hugs))). I will be thinking of you on Monday as you go for your scan.
Dee, What a beautiful beach. How far is it from your home? I have always felt that I was meant to live within view of the ocean. I find strength, peace, and energy from it. There is something about the smell, the sounds, the sight of the water that makes me feel at home. I am about an hour from the beach, and I enjoy going there in the summer. Of course the water up here is usually pretty chilly, even in the summer, but I guess I can't have everything.
Mom, It is good to hear from you. I am always amazed at how much you do. I really worry about you and hope you take time for yourself. I hope Dani's markers are down when she has the tests in two weeks.
Mary, I am sorry that your mother is not doing well. I know you have been going through a lot. You are in my prayers.
Tracey, I am glad you posted. Please don't ever feel that you have nothing to offer. We are all here to support each other, and that doesn't mean that we have to contribute anything in particular in order to participate. Heaven knows I have done more than my share of moaning, venting, complaining, whining, and rambling on this thread during the past four months without offering much help to anyone else. We are hear to listen and help, and no one expects anyone to be full of wise advice every time they log in. Sometimes we just like the friendship and conversations we have here. You are welcome at any time even if you just want to post pictures or tell a story. We all enjoy both of those things.
Jen, Welcome. You have received from good advice here. I am glad that you are doing your research so you are prepared to ask questions and make decisions. The only thing I can add is that your oncologist will probably make decisions about future treatments based on results and tests after chemo. When you meet with the onc, make sure you ask him or her everything you are concerned about. It is okay to ask about the possibility of different treatments. It is important that you understand why the treatment plan is being recommended, and you should have input into the decisions. Many onc see patients a month after they begin their tx and then less often, like every three months from then on, depending on tx.
Annie, How did your appointment with the orthopedic surgeon go?
Amy, I hope you are healing well.
Wendy, I will be thinking of you tomorrow. Good luck.
Good night everyone.
Lynne
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Babs and Dee - I feel on vacation just looking at your beautiful pics!
Bosco - thanks for checking in. Wow your port story...! Glad you're doing well and wishing you the very best on your scan results on Monday.
Tracy - that's excellent news! I've had a few bone lesions pop up on CT and bone scan which turned out to be arthritis. Good luck with Arimidex.
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Thought of you guys as soon as I saw this, wait for it, the end is pricelss, LindaE Prailine is a dashund right?
https://www.youtube.com/watch?v=2VXKmD-IvCw
Dee what a dream those pictures, thank you so much, really peaceful. We could be away without beinng!
Bosco soooooo happy you posting away. Once could almost imagine your DH's face when it happened. Poor soul. Hope you get better quick.
Mary aww so sorry for the agony. It's good that you are spending this precious time together. Warm Hugs. Pls post anytime you can.
Babs thanks so much for the pictures! We are taking the trip with you. The first picture is from an old synagogue? Looks very pretty.
Lynne how are you coming along at home? Managing? Listen regarding me, it is what it is. Love being a mom, it's a forever position. We do have some lovely moments. Dani is terrible independent, every moment in the day she is thinking of somebody else, she is in a community committee and is always helping "someone else". Food, taking in a child that the mom is sick, she sometimes cannot get out of bed in the morning, but the phone calls to organize this, keeps her up sometimes later than she could. So of course, I gotta do my part.We just do it, you know. So what if I pop some pills
Wendy cheering for you.
Chelle, Annie, oh so many of you, we haven't heard in awhile – where are you?? Valerie hope you are doing all right.
Everyone hello!
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I'm loving all the photos...bring 'em on!
Jennifer - what's going on with your breasts? Tumours, sizes, number, location...all that jazz. If you aren't big about surgeries, have you asked if you can get lumpectomy rather than mastectomy? Do you know if the chemo has shrunk the primary tumour(s)? If they haven't given you a bone scan yet, how did they diagnose that you had bone mets? Also, I don't think they would schedule radiation based on a bone scan. As I understand it, it lights up problem areas, but doesn't show size and can light up for some issues other than mets. Did you have a CT scan or MRI? When a hormone drug works, it prevents further growth of the bone mets, and many people here have had them shrink or go away entirely. Radiating mets that may go away with regular treatment would just hurt you and compromise your immune system for no reason. The natural reaction is to want to throw everything you can at the disease, but our immune systems and general health are a part of the equation, and over-treatment may actually cause more problems than it treats, IMHO.
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Oh, and at least I don't have to worry about scanxiety while I'm away on vacation...I still haven't received a CT scan appointment. LOL Even if the appointment letter shows up today and they have scheduled it for next week, I may just reschedule everything until after my holiday. Let ME delay things for a change!
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Good Morning All,
Thanks Moma for the Dashund video. Nice to start the day with a smile.
Dee and Bosco the photos are beautiful and makes me want to plan a vacation right away.
Welcome Melp, Debie and Jen. I would echo what Moma says about keeping reports, results. I keep all of mine in a binder ( it is full now!) and it has really come in handy when I go for second opinions etc. The actual scans and reports are sent electronically of course, but then I have the hard copies to review and then I can also re- read a past report to compare to current one. All you have to do is ask. My nurse told me recently that some patients just don't want to know details so they often wait until a patient asks for them.
Bosco, will be thinking of you on Monday.
Amy Yay that tooth is gone and now to heal well.
Lynne, are you and your dh doing ok? My dh has his cancer/prostate lab check next week and I can tell he is nervous.
Hi to all I've missed. You are all on my mind and in my heart.
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Momall- yes, the first picture is of the first Reform Synagogue in the US. My DH and I may go to services tonight?!? to see what it's like.
Bosco-so glad to hear from you and that you're doing better. Did you really tear out your port? Ouch!!!!!
Last night we took the ghost and cemetery tour-not great but I'll post pictures in a few
I feel like you're all on this vacation with us-love having you all along! I just wish you were eating with me-the food is terrific and way too fattening-Diet when I get home!!!!
Babs
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Mommal - that video is priceless! Praline is an American cocker spaniel.
Patty - miss you.
Good day and week-end to all.
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the cancer in my breasts is all on the left side, 20+ small tumors that cover from 5:30 to 9:30 in their clock measurement terminology. Also lymph node involvement of course. The mets were first seen on a pet scan (which showed spots on pelvic bone, elbow, and also showed my home marrow as picking up more of the contrast that they were comfortable with, also small spot on lung and kidney that they weren't worried about). Then I had an MRI of the pelvic bone and a failed biopsy, but the head of Path and my Onc both believe it's BC at that site despite not having enough of a sample to clinically diagnose. This will be my first bone scan coming up.
I had an MRI of the breast halfway through chemo and the effect was very small at that time. Slight shrinkage and the fastness that the tumors picked up the dye slowed from fast to medium. Hoping the next three rounds did some more Magic on them.
The BS initially said mascectomy for the left and I'm pretty sure I want the right one gone too. But I meet with her in April and look forward to her updated recommendation. I want the cancer out of there.
The radiation is something I'm less clear On how to proceed. Some very interesting results radiating early out of MD Anderson on patients with fewer than three bone mets.
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Jen,
Check out info on oligometastasis. This is generally defined as less than 3-5 mets to a single organ/bones
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Before I forget or that too much time passes, I wanted to let you guys know that Rachel and I met up far too briefly in a park near her house when I was visiting Philadelphia a few days ago. I've been completely overwhelmed and exhausted between traveling, and being back to work yesterday. Also my creatinine is elevated and they restested me today. I'm supposed to get a saline infusion but I'm waiting too long and have a derm appointment so I may have to skip. I hope everyone is doing well!
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Cristina & Rachel. Great picture. Great smiles
Jen I'm hoping with you that the last 3 rounds did its job!
Today we toured some mansions and gardens
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Thanks for all of the input ladies. I truly appreciate any guidance. Met with my MO yesterday. It was rather overwhelming. So far, there is nothing textbook about my diagnosis! My bone bx was sent out for FISH testing and the results came back inconclusive. I was Her2 - with my original DX, but the first round of pathology tests showed it could be + now. I need to decide if I want another biopsy to confirm the Her2 status, just start Herceptin every 3 weeks, or do nothing yet. I will have to have a CBC weekly, meet with MO monthly and scan every 3 months right now. I'm leaning toward waiting until my first scan is complete before I add any treatments. I want to see how theFemara/Ibrance combo works. I asked about ovary removal since Aromasin failed, and he said no. I had a super meltdown driving home from shopping earlier today. Just sad about all of the things I may never see with my daughter and hubby. Haven't really had a good cry since being diagnosed! Also on steroids for a bad chest cold, so that might have something to do with it. Thanks for letting me ramble. Have a wonderful weekend all!
Deb
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Deb understand that I am just going to give you a very lay person's opinion. But definitely, many people take their slides to a different pathologist, in a different place. In Pittsburgh you have so many notable Hopsitals or cancer center that you would be able to get a second opinion on. I think it would be beneficial for you to know if it's Her2+ or Her2- the treatments are different. We did it for my daughter's Dani biopsy, no, not right away, first we had the info from the lumpectomy, it was done in a major Hospital in NYC. Also, at the time it did not even occur to me to question it. But just a yr ago when she had a biopsy done due to much aggressive progression, we did request the slides and took it to a different center for ceritification. And her status did change btw. Also no matter what, if you are just starting it all, another opinion for sure it's not a bad idea altogether. And, Deb a good cry is refreshing and needed. Trust me we all cry, maybe with time it will become less than a shock. I love ppl that cry when they have to and lagh when they have to, what the heck!
Babs hmm, quite interesting. How peaceful the area looks
Lindalou great- I did wanna share the smile. And yes, Dani does not wanna look at her info either, it's sufficient for her that she knows I am on top of it, so it's not ignored, she knows I read it and I call the docs office when something is not right, which it has happened.
LindaE oh I messed up, not good with dog breeds, there are a few dogs on my block, but I will never learn. the video was so cute.
Jen if they did not get the biopsy so right, also how do they know about your ER PR Her2 etc...
Suersis yep it's enough to drive one crazy. Could it be that because it was taken at different times those are different issues? This is what I understood from your post, so yes then it could make sense.
Milaandra vacay it is!!
Everyone have a gr8 night.
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They don't know the receptor type for the bone mets but for now said not to biopsy again. They will wait to see if the chemo made s difference and then go from there.
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Sue,
It's my understanding that your CT scan is confirming bone mets. Sclerotic meaning a thickening of the bone which could be from the bone trying to heal itself. So in other words, multiple areas throughout your skeleton of metastatic disease to your bones. I'm getting this from my own scans over the past three years.
Sorry to hear this news, provided my interpretation is correct.
Amy
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Babs, thanks for continuing to post the nice pictures of Charleston! I've been there three times, but long ago, and it's such a wonderful city, and spring is a great time to be there.
Jen, regarding your questions, here's my experience. By the time I saw an oral surgeon to clear me for Zometa I was on my fourth chemo treatment. The MD Anderson study is interesting and probably why my MO has treated me aggressively. I have two small bone mets, on the hip and spine; no pain. Even though I had chemo, my MO wanted to radiate the sites as well. I had 10 tx to each site and didn't suffer any SEs. After that, I had surgery, and then MO started me on Arimidex. Of course, you're much younger, so I would think they'd want to start you on hormonal suppression sooner than later. It seems a common theme that oncs don't always volunteer information and many times one must ask for information not because they're keeping anything from you, that's just their way. My onc sometimes falls into that pattern.
Hope everyone has a nice and pain-free weekend.
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Sue, what you've brought up is one reason it's really important to have your scans done at the same place and read by the same radiologist, if at all possible. Unfortunately, reading them is as much an art as a science, and interpretation can vary. Is what you quoted above the full content of the first report re. bones? The second one sounds like it might be indicating healing to me, but that's difficult to differentiate, and is often a judgment call based on the full picture, including pain level and TMs. How far apart were these two scans done? Did your onc never mention bone mets to you in the past? And did the current radiologist have the previous scan to compare? The difference in the node could be due to tx response, I would think. The effusion could be something new.
Deb, I'm going to venture a guess that having a recurrence as soon as you did just might mean something is going on with your Her2 status. If you aren't already being treated at a major university teaching hospital, one thing you might consider doing is getting a second opinion at one of them.
I'm very much enjoying your photos, Babs! Hope you're having a wonderful time there!
Have a good weekend, everyone!
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