Bone Mets Thread
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Nkb - Hi and thanks - I have been reluctant over the years, to post my stats for a number of reasons. Initially it was because I just didn't always want to see other people's all the time, because I just wanted to hear what they had to say and not get "consumed" or distracted by their stats. I wish they had a feature where you could choose "show stats" or not. I admit they can be extremely helpful to the others on these boards, and I have found them very informative and useful for myself, but I just have some reservations.
Then came the big site screw up and the data breach. That made me even more reluctant to post my data. They even messed up the data others posted, so that what it read like was not what it actually was for quite some time. The fact that this site is not all that trustworthy continues to prevent me from making an official post.
I can tell you though, that I was diagnosed in fall of 2018 with a left breast IDC, 5.5 cm tumor, ER/PR+, HER-, grade 2, stage 3b breast cancer. I did neoadjuvant AC+T during winter and spring of 2019, had surgery in July 2019, and then got proton radiation in the fall of 2019. Have been on Letrozole since Jan 2020 (and obviously it didn't help much). That's the treatment I've had.
It's amazing to hear that you've had 6 years of bone only! Congratulations!
I know that some of the drugs can be fairly tolerable and can work for a good while, but that it all depends on the person and the cancer (human genetics along with the cancer's genetics). My understanding is that you never know until you try, and then one might work real well for you, and another does nothing, or is outright intolerable. Sounds like constant trial and error; hit and miss. It's just that all of these treatments I've had so far have given me some kind of negative side effect, and I don't relish the idea of spending the rest of my life dealing with drugs and side effects. It sounds terrifying. When you have the initial diagnosis round of chemo, you know there will be an end to it, but not with this. I read what some here go through and my heart just breaks for their situation and at the same time I am blown away by their ability to keep chugging along and dealing with whatever they have to at any given time. I don't know if I've got the moxie for that, although I wouldn't have thought I could have gotten through the last 4 years either when I first heard my diagnosis, but I did.
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Threetree- I so get it. Many times I don't think I have the moxie either- but, somehow I do. I think of my kids being without a mother - they are in their 30s, and my DH would be so lonely and the worst part goes away and I am ok again. being awake at 2 am is a very scary moment for me that I try to avoid it or get up and watch house hunters or something.- things look so bleak then (for everyone I have heard).
It is all a crapshoot and so unpredictable - the stats are not necessarily your outcome- I have to say the people who get cancer in their 30s with small kids break my heart- I have had many BCO friends die over those 6 years which is very demoralizing and incredibly sad- the wonder women that world and families are losing.
If I had your drug sensitivity I would start low and go up in dose- not the other way around. most people do not need the highest dose- it is just the highest dose tolerable not necessarily the most effective dose. I have heard that there is some sort of test that for $1000. per drug they will test it on a tumor sample- but, it is not in vivo- so being tested on a Petri dish may not translate- who knows. You have lots of oral options currently and many are very effective especially when you are not "heavily pre-treated"
always nice hearing your prospective
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Nkb - Likewise re always nice to hear your perspective. I always appreciate your posts.
Great ideas about starting with a low dose, rather than just the standard. Not sure my oncologist would be on board though, as she is totally by the book. Can't hurt to ask though. Also, I recently read about a place here in area that does something called "metronomic chemo". It's given at an integrative medicine clinic that's run by an MD oncologist, so I don't think it is totally flim flam. From the very rudimentary info I have about it, they give chemo at lower doses for longer periods of time, and it's supposed to not have side effects that are as bad as with standard doses for shorter terms. I've never seen it discussed on these boards, and don't know how legit it might be, but it was interesting to read about. Looks like it is mostly stage 4 cancer people who go there. Again, that lower dose idea is really worth some thought.
Also re side effects: I just got back from a long walk, and on that walk I realized that some of the reason I'm so scared about drugs and side effects (aside from my sensitivity) is that I have two very dear people in my life who are currently dealing with horrid side effects from cancer treatments. My old "bestie" all through school, who lives in another state now, has stage 4 lung cancer and she is a mess from treatment side effects. They had her on Keytruda and then out of nowhere it caused her all sorts of problems with her skin and much more. They told her she had to stop and then they gave her big doses of steroids to counteract the Keytruda side effects. The steroids wound up causing "steroid psychosis" and she had to be taken to the hospital by the police, because she became combative with her husband and neighbor (who suggested to her that she needed to go to the hospital), and the medics who came when her husband and neighbor called 911. She was truly "out of her mind" for some time, but thank goodness recovered eventually. Apparently a small percentage do not. She is however left with some sort of permanent autoimmune disorder (similar to Scleroderma, but not the same) that renders her unable to put on her own shoes and socks, wipe herself when she goes to the bathroom, and more. She also had to stop chemo early, due to very serious side effects. That's when they switched her to the Keytruda. There is now nothing that she can take to slow down her cancer.
My SIL who lives here in my city had Hodgkins when she was in her 20's and a few years ago developed a very bad case of pulmonary fibrosis that they suggested was due to the radiation she got back then. She then got a recurrence of the Hodgkins just about the same time I got diagnosed with breast cancer. She could not complete the chemo, because it landed her in the hospital with pneumonia. She's had 2 bouts of pneumonia now through all of this, and she also had to get a pacemaker placed. They think that all of her heart and lung problems she has now are due to previous cancer treatments. She can barely walk now, uses a cane, and has a steroid inhaler for her lungs. She's just a mess, and it's not the cancer - they tell her they think that's all taken care of. What got her was the treatments and side effects.
I can't help but think about these two people who are so near and dear to me, and their experiences. It does really color my thinking.
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Sondraf - LIke others have said, doctors are worried about the radiation. I became NEAD in July 2020 and slowly my MO reduced my frequency between scans as I continued to remain at NEAD. He decided after my last scan in May of last year that we would reduce them to once a year and that scan is scheduled for early April. I am glad to reduce the exposure but would be lying if I said I wasn't nervous about going so long.
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Wow, Threetree, I am so sorry that your friend and SIL are going through that because of meds. I can see why you are worried about the addition of more and more meds.
I have read so much on these boards this last week, it is overwhelming. Just last month, my oncologist said "I consider you cured!" and then all of a sudden, my world was flipped upside down. We had a retirement life planned (my husband is about to retire), land purchased near my little grandchildren, house plans saved on my laptop, etc. And now, well, we don't even know if we should move, we don't know anything about oncologists in Oklahoma, etc. Since I don't know yet what the ct and bone scan results are yet, I don't know how bad it is... My mind is playing with me, maybe you only have months to live, maybe a few years, maybe your tingling lips mean that your brain has tumors, etc. I am ashamed to even say that I have such fears, here, for all of you brave women to read.
I have a question that I know my oncologist could answer but since I don't meet with him until the 23rd, I'll ask here. Are all bone mets treated with chemo right away or do they try some other sort of treatment first? Of course, I don't know yet if it's only bone mets, but I am hoping so.
Secondly, for those of you who have been in treatment for bone mets for a while, with the drugs that you are taking, are you able to live a somewhat normal life, working, or out enjoying your children or grandchildren, etc? Do you have the strength to travel? I hope that does not sound like a silly question. I just don't know what to expect. I don't know anyone personally who has gone through this. You all here are my source of information until I meet with the doctor.
I was going to put some personal info here about myself, so that I am not just tld2017, but I think I remember someone saying that this site had been compromised, so maybe it is not safe to do that?
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tid, I was dx with bone mets in May 2022. I started on Xeloda and Letrozole and couldn't tolerate the side effects of Xeloda. My one says 5% have my problems (too dizzy to stand up safely). They stopped that and started Ibrance as soon as I got the scholarship. I'm doing well on that and recent scans showed nothing new and some healing of the bone met. I'm able to do everything, taking art classes, seeing friends, etc. My grandchildren are older. I 'm not sure I could keep up with toddlers.
I have relatives in Okla. Several have gone down to MD Anderson in Houston for treatment. Drove the motor home down and lived in it while getting treatment.
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Wren, thanks for the info and so glad to hear that you are doing well. What a relief it must be to know that your scans showed nothing new and also some healing! Gosh, I am truly happy to hear that! My grandsons are 1, 3, and 5, so they were hard to keep up with before this latest health issue, hehe, bless their sweet little hearts! The land we just bought is right outside of Tulsa so I need to research oncology in that area if I am actually well enough to move, but I've also heard wonderful things about MD Anderson obviously, so that might be the safest bet. We live in Virginia now and are blessed with a great oncology team in our area.
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tld- There are several variables which determine which treatment to try first but many of us with bone mets only, who are HR+ HER2- start off with endocrine therapy (Letrozole or Fulvestrant being the most common but not the only drugs available) plus a CDK4/6 inhibitor (Ibrance, Verzenio or Kisqali) and possibly a bone strengthening drug such as Zometa or Xgeva. Since I don’t know your sub-type, I’m attaching patients guidelines for MBC in the US. https://www.nccn.org/patients/guidelines/content/PDF/stage_iv_breast-patient.pdf
Like wren’s relatives, we also used our motor home for treatments. When I was dx early stage, we were 4 weeks from closing on our house in IL and retiring into our vacation home in rural Wisconsin. So much stress at a time which should have been exciting. I kept my team in Chicago and traveled for chemo. Then I was dx MBC when we were snowbirding in our motorhome in Florida. I was 3 hours from Moffitt in Tampa so we parked our coach in their grassy field. After a year, we hung up our motorhome keys, sold Wisconsin and settled in Florida permanently. Juggling doctors across state lines was problematic for me. I just wasn’t stable enough and it gave both myself and my husband too much added stress. Besides, our place in Wisconsin was maintenance intensive and I could no longer do what I used to do. It was a relief to both of us to simplify our lives.
We all have different tolerance for protecting our personal info. If someone wants to know what meds I’ve taken, so be it. But that’s just me. With so many women on this board, it’s difficult to remember all the particulars of everyone’s journey. Sometimes your details help us answer your questions better. But if you’re not comfortable posting details, that’s fine too.
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Wow, I missed a day and now have about three pages to read. It's nice to see the activity here.
threetree, I hope it's "only" bone mets, too. The scan table is hard, I agree. They always make sure I've emptied my bladder before we start the scan. They put a wedge under my knees and offer me a warm blanket. My favorite nurse, Nancy, always plays soft music. I get scans every three months, and I did have a biopsy of the spot on L4 to confirm the lesion was cancer.
sondra, I got a chuckle out of the radiation thing. Do they think it might cause cancer? Too late! Hahaha! Sorry for the inappropriate humor.
tld, sending you courage and comfort as you get your results and discuss them with your MO.
Waving hi to all the rest,
Carol
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tdl, ask any questions you like, big or small. That's what this forum is for. I don't consider myself brave. When I was diagnosed, I had to dig deep down inside myself to find out if I had what it took to deal with this mbc news, and if I didn't have it, I had to create it. It takes time to adjust and learn coping mechanisms. Can and do women with mbc live somewhat normally? Overwhelmingly, yes! Sure, there are challenges. But I've had some of the best times, best moments of my life since the diagnosis, not because of it but in spite of it. It really is about living with mbc, not dying from it. I've traveled, picked up new hobbies, made home improvements and much more. I have great times with my family. I still grapple with relationship complications among some family members and deal with the everyday frustrations of life. But hey, it’s all part of normal life!
gigil, did you mean you have others trying to discourage you from taking meds for anxiety? It’s very unsupportive of another person to react that way. Why do others think they know better? As adults, we can decide for ourselves what’s in our own best interest. It’s no one’s else’s business.
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Reading along, I was reminded of when a friend expressed concern about "ooh, that seems like a lot of radiation" when I happened to mention I was getting my scans again. I asked what she was concerned about, and she said something like, "radiation could cause cancer". I proceeded to give her The Hard Stare (perfected by Paddington in the movie), until she realized what she'd just said.
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I love “the stare” That was perfect 😂😂😂
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tld2017 - Boy do I hear you about being so overwhelmed with all the reading on these boards, after having "crossed over" to stage 4! I can't keep it all straight, but I sure do appreciate the input of so many others.I can't believe your doctor said he thought you were "cured". I didn't think any of them would venture to say that any more. I don't have grandchildren (yet?) but I do know that if I did I would be having the same dilemma as you. To have those grand plans all screwed up by this - it's the old, "It's just not fair!!!!" thing. I am so sorry for that, and I hope you are able to come up with a plan that works in some way. Wow, three little boys - so much activity that would be.
I also truly sympathize with your fear over what the scans might show. I could have written part of your post in which you shared your "tingling lip" concern and more. I too have been ashamed and embarrassed to admit just what a scared baby I am about all of this too, as I have also thought that so many others on here seem so brave, and I am so wimpy. Since they said mine had gone to my spine, I too thought that any tingling or related thing might be the cancer in my spine. I actually wound up tingling all over, shaking, going from hot to cold, and even more one day; just overall freaking out, so went to ER and told them I didn't know if it was the cancer or panic. They determined panic. I was better even after the scans got done, and even though I'm not thrilled with the results, I'm glad that I did read them and I do know what they say. I'm much calmer now, as I wait for the follow up visit with the dr on March 1. Just trying to take in all I can now from reading here, before I meet with her. I always like to have done some personal investigation after getting test results and before talking to dr.
I too am very interested in hearing what others have to say about the questions you've posed re drugs, ability to live a normal life, and knowing what to expect generally. Doctors can weigh in of course, but I sure do appreciate hearing directly from those who are "living it".
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Just adding my treatment experience…I was diagnosed with bone Mets in Oct 2021. I did a course of chemo, though most don’t, and then started on Letrozole and Kisqali in Apr 2022. I have continued to work my regular part time job, travel, run, take care of my chickens and do everyday normal things. I have joint stiffness, probably related to the AI, and low blood counts because of Kisqali, but mostly I feel great. My most recent PET scan was NEAD, I’ll scan again at the end of March. In the beginning I thought I would never be able to enjoy anything ever again, but I’m fortunate that treatment has been effective and quite tolerable
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Thanks to all who responded to my thoughts and questions! My laptop is being repaired so I'm trying to type on my phone, which I'm awful at, haha. I keep remembering little things my oncologist said on the phone the other day. He said I did everything right, everything that was asked of me treatment-wise. The only thing I had to stop was Nerlynx, because it caused acute kidney failure. I could just hear the disappointment in his voice, that's how sure he was of my prognosis even before getting CT and bone scan results. Maybe because I was HER2+, I don't know. Anyway, getting over a bout of norovirus and now acute sinusitis caused from violently throwing up. Gotta love antibiotics. Well, I'm going to put my face in the sunshine now for a few minutes even if it is cold outside!
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I forgot to add how nice it is to read that so many of you are doing well with treatment! That is truly a wonderful thing to hear. Thank you for taking the time out of your day to respond!
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tld2017 - So very sorry to hear that you haven't been doing so well. Nasty norovirus! Feel better soon!
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threetree - what part of Oklahoma are you thinking of relocating to? I’m in the Panhandle. I’ve been happy with my oncology care.
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Hi Cowgal - It's Tld2017 who hoping to relocate to Oklahoma, not me. I think she said the land they bought was outside of Tulsa. She's wondering what the medical center/facility picture looks like. Apparently some go to MD Anderson in TX, depending on where they live. She's interested in options and experiences from others re getting treatment in OK.
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Thanks, Threetree, I am feeling better now for sure! Hi Cowgal, we purchased land just south of Tulsa, so Tulsa would be the city I'd go to for oncology care. Threetree said it exactly right, if I am well enough to actually move there, I'll need a good oncology team and was just wondering if anyone in the group had insight on it. MD Anderson is about 7 hours away, I believe.
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Are there any others here that are HER2+?
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tld2017 - I would think that you could find a good oncologist in the Tulsa area. Both my mother in-law and my sister in-law lived near Sand Springs and got diagnosed with cancer a week or so after my recurrence at stage 4 in 2019. My mother in-law had brain cancer and my sister in-law was breast cancer (I think stage 2). They both had oncologists in Tulsa. I will ask my SIL if she has any recommendations and let you know. I am out in the Panhandle and my oncologist is with Cancer Center of Kansas out of their Wichita, KS office and luckily, I am able to see him at an outreach clinic they have that is only 25 miles from my home. In the Tulsa area, you are only an hour and a half from Oklahoma City as well.
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Hi tld
I'm HER2+ with bone mets. Still undergoing 6 cycles of taxol/PHESGO/xgeva. Finishing Mar 23. Thereafter bone and ct scans. Then treatment plan.
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Peoy, thank you for letting me know that you too are HER2+. Sometimes it feels like a lonely world out there, being HER2+. I pray that your chemo is kicking some cancer cells to the curb right now!!
Mosche, wow, your message also gave me some hope! I meet in person with my oncologist tomorrow and I know it will be a very difficult appointment. I have refused to look at the full scope of how far the cancer has spread - it is all in the ct and bone scan results in MyChart but I just can't look at it. I will just let him tell me tomorrow. But from what he has already seen, he was very sad in tone, and like you said, I could definitely hear the pity in his voice. I love him, I really do, but gosh, I really hope that he shares a little more hope with me tomorrow no matter how bad the results are. I am so very happy to hear that your quality of life is so good right now - wonderful news!
Regarding anxiety meds, I have been taking .25 mg of Xanax the last few days, just one a day, but it helps. I feel less like just sitting in a ball on my bed and shaking, and find myself able to think about regular "normal" things instead of the cancer growing in me. It does not work all day, this one little pill, but it helps me and I am grateful for that. I have an appointment on March 7th with a psych NP, who will help me figure out what I can take daily long term to help with the fear that comes along with this new diagnosis.
I agree with all of you that have posted about how great this resource is - having you all to talk to is priceless!
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tld— sorry II took a while to log back in but here’s my story. I was diagnosed in 2017 after I found a breast lump. They told me I was stage 2 at first but within a few weeks, during planning for surgery, I had an MRI that showed something suspicious. I was referred for a pet scan and my bone mets were found. SO I’ve been treated for MBC from the start. I would have gotten Taxotere, Herceptin & Perjeta, I had already seen an MO and that was the plan if I was Stage 2 but once the bone mets were found she change the plan to Taxol, Herceptin and Perjeta plus Xgeva. She said taxol was a little easier in terms of side effects. I had considerable shrinkage of all my tumors by the time of my first post-treatment scan. After that my subsequent scans showed “no evidence of active disease” I was taken off the Taxol since I had responded to treatment and remained on H&P plus I started hormone therapy (anastrozole) at that time.
In 2019, the met in my L1 vertebrae became active again, and I had radiation to that area. After that, scans were NEAD again. After two years I stopped Xgeva so I could catch up on my dental work and I have not gone back on it. When I switched cancer centers, I was able to get the injectable Herceptin (Hylecta) plus a perjeta IV and when PHESGO came out I was able to get that. Still on PHESGO and anastrozole, even though the MO I saw last year thought I could safely stop H&P. I had some insurance issues too at that time and wound up taking a five month holiday from H&P and still had a NED scan afterwards.
Now I am back on PHESGO and anastrazole and doing fine. I can do everything I used to do and my medical appointments are no more than an annoyance. Except for some joint pain which could be caused by anastrozole, I have not been in pain or had any terrible complications. Herceptin and Perjeta have been super effective for me and I am very very grateful for the treatment I have received. Cancer only intrudes on my world when I have to show up for my many medical appointments.
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Mozuke, I'm sorry cancer worries are popping up. I agree with Divine about otc meds to quell the discomfort. If you still don't feel right in a few days, call the doctor. Cancer has taken so much from each of us. Don't lose out on those memories with your daughter. I'll be thinking of you and hoping the discomfort goes away.
Divine, thanks for the encouragement. I don't have enough Xanax to last until the 7th so I'm really hoping my oncologist will give me 2 weeks worth to get me through. I might not need it every day but it would make me feel better to have it in case I do.
Olma, thanks for the info, I'm grateful! Gosh, you give me hope! I hope I'm bone Mets only too, and can do as well as you have been doing! What great news to share, thank you!
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tld2017, thank you, it helps to share things with people that can understand. I’m here at my daughter's now and we’ve had such a nice night. I'm trying to just enjoy it. I’m not in any actually pain now, something just feels weird. I’ll watch it until Monday and call my dr if things still don’t seem right.
Divine, my daughter's principal instrument is piano, but as a music ed. major she has to also have a secondary, which is Alto sax. It’s my first band concert, so I’m looking forward to it. My daughter and one of my sons both go to Ohio State and share an apartment, so I’m staying with them tonight and tomorrow night. (I think I remember that you are also in Ohio…) Thanks for the support, I appreciate it
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So, I got some confusing but reassuring news today, confusing even after a 45-minute discussion that my husband and I had with my oncologist. The MRI that I had two weeks ago showed a very defined enhancing osseous lesion in my lower spine area/sacrum. I saw it myself - it was very dark and very obvious in one image, and then "lit up" in another image. At that point, my oncologist called me with the "doom" phone call. Today, he said the CT scan did not show the lesion at all and the whole body scan said this: "No bone scan correlate is seen for the right sacral ala lesion identified on 2/6/2023 lumbar spine MRI. The lesion is indeterminate and neoplasm is not excluded. Consider follow-up pelvic MRI." So, my doctor said I need to go in next week for a more detailed pelvic MRI and then possibly a biopsy. He said he is holding off on doing the biopsy right away because it is in a difficult spot and apparently quite painful. He has now gone from being confident that the tumor was malignant and that my prognosis was very poor, to giving me a 30% chance that the tumor is malignant (he admitted this was just a guess from his experience). We were all relieved that there is no sign of the cancer being anywhere else in my body, by looking at either scan. I guess my medical knowledge is so limited but I thought that the ct scan and whole body bone scan with nuclear contrast would be better than the MRI that I had two weeks ago? I did not think to ask during the appointment today why this enhancing osseous lesion would show up in the MRI but not in the CT scan or whole body scan. Do any of you have any experience with this type of thing?
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tld, how confusing! I'm sorry you're getting conflicting reports from the one person who should really know.
For what's it's worth, my biopsy on L4, L5 was not painful at all. I had twilight sedation. I was prone (face down) on the table, the nurse said, "Here's your happy juice," and I dozed off. I did have to tell them in the pre-op area that I was NOT there for a BONE MARROW biopsy, but rather for a biopsy of L4, L5. I had no real pain afterwards - just a little swelling around the biopsy site. It was CT guided, as I recall.
Carol
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Sunshine99 - Thanks so much for describing your bone biopsy experience. I'm sure it will be a big help to many; including Tld2017 and myself. I for one am absolutely terrified at the idea of a bone biopsy, and reading your comments helps measurably. I'm still waiting to see just what kind of and where my oncologist wants a biopsy done after my recent bone and CT scans. Don't see her until March 1.
I'm still hoping with all my heart that Tld2017 gets much better news and won't have to think about this.
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