Bone Mets Thread
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nineteelve,
Welcome but sorry that you have to join us. It is not uncommon for women with stage IV, particularly bone mets, who are ER+ to go on an aromatase inhibitor (AI) or even tamoxifen. I have never had chemo, AI's only and rads to my bone met, and have had three very normal years so far. That being said, a second opinion is always a good idea. It may confirm the tx plan that's been proposed or offer other options. Either way, it will ease your mind. I don't think you'll be stepping into the grave anytime soon
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Hi Eve and welcome to our group, although I wish you didn't have to be here. It's understandable that you are confused about your diagnosis and treatment, it's a lot to absorb and most of us when diagnosed have never heard of words like "mets" or stage IV, all the emphasis seems to go to the early detection stages. Like we like to say around here, we don't have an expiration date stamped on our fronthead, but it is true that this stage treatment is different than that for early stages. Basically you and I have the same type of disease I am er+ and have mets to several bones and the standard treatment for that is either tamoxifen for pre-menopausal women or the various anti-hormonals such as Arimidex for post-menopausal women like myself, both types of medicine affect the way our bodies produce estrogen which is what "feeds" er+ breast cancer. This is also the reason why your doctor is recommending ovary removal. This type of treatment is called "systemic" because it affects all our systems while chemo is usually prescribed when the cancer is still localized to the breast.
There a lot of women living with metastatic breast cancer for many years however it is also true that right now there is no cure for it but it is possible to treat it as a "chronic" disease. There are lots of treatments available to estrogen + patients and doctors usually like to save the big guns (chemo) for the time when all those other treatments have failed.
I've found in these forums lots encouragement and support and information so you are in the right place and others with more experience will come in and share with you their experience and support. Don't hesitate to come here often as we can understand like no others can.
Aurora
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nine, I felt just like you. both drs I saw suggested tamo first and I said no and went for chemo. I'm now on tamo. What I would suggest is that u start with tamo first. It's a small but mighty pill. I believe I have responded better to tamo than chemo. At the end of the day it's your decision. I would say if u start with tamo your dr will monitor u so if it's isn't working be assured your dr will make treatment changes
Margie
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Hi Eve. I was -- and remain -- surprised that my doc is treating me with "only" Arimidex. She, too, is saving the chemo for last. I feel like I would like a bigger gun. I had prepared myself for chemo. However, so far that does not seem to be in the plan. I meet with her tomorrow, so I will see if anything new has developed. Mama Bear is going with me because she wants more information. Knowing my mother, I will have a lot of information tomorrow. LOL
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Yes, I have. I was treated aggressively with chemo and radiation by my first Onc. It was tough as I was 72 years old. I changed oncologist and he took my case to the board in his group and he told me he would never have given me chemo or radiation and would have started me on hormonal therapy. I wish I would have gone that route and then save the aggressive treatment when and if needed. Don't feel like you are giving up. There are a lot of options out there. I have bone mets in ribs and spine and have lived a pretty normal life for almost 3 years. I swim 4times a week and shop till I drop. I do have fatigue from Faslodex and minor neurothopy from chemo. It is kind of a crap shoot. I wish you well NineTwelve. Barb
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Hi Eve...as others have said - welcome to our group. I am sorry you had to join us, but you will find this to be a very supportive, knowledgeable group of women......no better place to go when you need opinions or just a hand to hold. I have found the collective information here to be invaluable. I am one that had chemo right away....I was 46 when diagnosed Stage IV. That was two years ago and I am still trying to recover from the treatments. I have fairly serious neuropathy and am still working on gaining my strength back. I wish I'd gotten a second opinion and had my ovaries out and started a hormonal treatment right away....I can understand what your doctor means when he says it's about quality of life. It is. I know this is an incredibly scary time for you, but rest assured that you really are going to be okay. That being said, I think a second opinion is a good thing....and you will feel better at more at peace with whatever treatment you choose.
Deanna - I read your post in regards to who in your family/circle of friends should be told about a Stage IV diagnosis and who shouldn't, and I couldn't agree with you more. Because I had chemo and obviously lost my hair and looked like a concentration camp victim for six months, it was pretty obvious to everyone that there was something wrong. However, I now (although I don't have my strength back) look completely normal.... hair all grown out.... probably better than I did before because now I am taking such good care of myself. Anyway - it is inevitable that I am asked by EVERYONE how I am doing or how I am feeling. I know everyone means well and of course I say fine and thanks for asking....but I feel like you said - that I am being defined by cancer and that's all they see - instead of seeing me. I actually told my husband that I want to move somewhere far away where nobody knows me so I don't have to keep answering that question. Also - that dinner party didn't sound like much fun and I can completely understand how you would feel sitting there - I would feel the exact same way. I'm sorry you had to deal with that!
I think my humble opinion on that question is that family - extended family - and close friends should know, and that it isn't important that anyone else does know, at least for the time being.
XOXO to all -
Andi
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eve,
As you can see, there is no one approach to stage IV tax. Sometimes the mo prescribes chemo from the start, sometimes patients insist on it. You'll hear words like "big guns", "throw everything but the kitchen sink at it" etc. One school of thought is that bigger or more is not better. There have also been studies that suggest that chemo naive patients respond better to chemo. So, for me, I thought I'd give AI's a try. If and when they fail, I hope I will respond well to chemo. Either way, I am at piece with my decision, especially since I have led my life as normally (and happily) as possible. Don't misunderstand, I won't hesitate to do chemo when I have to, but my current choice of tx has been the right one for me.
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Eve, I am also on Anastrazole (generic Arimidex, an A/I), and so far-so good. As my onc put it regarding drugs, "We have A to Z available," and so far I'm on A. If you jump into chemo (which is probably around E or F, so to speak) from the get-go, you may never know if Tamoxifen would have worked for you for awhile, leaving you the most options still open. But as someone said above, if you have doubts, by all means get a second and maybe even a third opinion, because I personally believe that trust is also very important, and if you have any doubts about your onc or your tx, that's not going to be helpful. Talk to as many oncs as you need to until you find one in whom you have complete confidence. My personal preference is one who does breast cancer oncology 24/7 -- not one for whom bc is only a part of their practice and focus. Deanna
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That is a great quote, Tracey! I try to live like that, too. Carolyn, live it up the next three months!! What are good scans for?
As far as telling family, I think it's about you not them, especially at Stage IV. So do what works best for you. You probably will have to tell them at some point but that point could be far into the future.
Edited to add: ACK, didn't realize I was reading older posts. Sorry if I'm repeating what others said.
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Thank you all for taking the time and effort to respond! I feel much better knowing I got the appropriate tx to my stage and type. I will look into a second opinion, though, because that's the sensible thing to do.
I do have confidence in this M.O. He seems kind and caring and he carved out the time to see me from his lunch break, so I could get my PET scan results as soon as possible.
The thing is, last week I saw a different M.O. who wasn't very approachable and who outlined a very aggressive tx plan for what we thought was my stage 3 diagnosis. (Then they found the fluid around my lungs. Change of plan. And change of doctor, because the first one took a lengthy vacation and forgot to mention it.)
The plan now: Tamoxifen (already have it), Zometa, and Goserelin (until the oophorectomy).
And we'll see how that goes...
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NineTwelve: Sorry you are dealing with stage IV. I would agree that your onc's would want to save the harsher treatment as a later option. My onc would have done the same if I had not had inflammatory bc. It requires chemo as first line of treatment.
Hope your treatment plan works well for you.
Terri
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Thanks for all who told me about the sensations of spine met pain. I guess my wonky hips are just not associated with the lumbar met, but it's such a strange coincidence, isn't it?
Tracey...the story of the transplanted Canadian (Niagara) in Scotland and her camel injury...it's not all that exciting, really
We took a tour of Morocco. The first night in our riad in Marrakech, we were walking downstairs to dinner and of course, my head is looking everywhere but at my footing. Moroccan staircases tend to have, instead of a landing, a diagonal step and...well... I didn't fall (a minor miracle) but I did land hard enough to rip the leather of my sandal and jar my hip pretty badly. A few days later when we went to the Sahara, we were supposed to have a day and a half of camel riding...I really wasn't sure because my hip was still sore, but DH and our guide suggested I would be disappointed if I didn't...well, camels are pretty darned tall even when lying down!! Too tall for a short, rounded middle-aged woman with a sore hip. Needless to say, it hurt a lot to get on...and when I told them I couldn't keep going, it was truly excruciating trying to get back off!! (Well trained camel, though...it was pretty calm even though I was stuck half-way off and emitting high-pitched, high-volume noises of pain and panic) We skipped the full day in the desert, but even at that, the last couple of days of the vacation weren't much fun for me :P To add insult to injury (literally!) my husband took to camel riding like a long lost Bedouin.So, ladies. How long does it take before you stop wanting to wrap yourself in bubble wrap? I feel so fragile...I don't even want to walk anywhere because I'm afraid of stumbling and causing damage. I can't imagine what I'll do if we get a slippery day...I walk to work...
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It's been really hard telling people...mostly because I don't want them to give me sympathy at this point. I want to be positive about this, and that can be difficult enough without people getting freaked out. I did tell my sister after I was diagnosed, and a couple of weeks later I told a couple of my good friends in Canada by Facebook message, but made it clear that I considered this a chronic and controllable disease. I think because I was pretty calm, they took it well. We haven't told my in-laws yet DH's been avoiding calling them so he doesn't have to tell them.
Everyone is different, but I find that distance helped me...email, telephones and some time.
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Well not good news from the bone scan.... I have progression in sternum & spine, though my one met on my rib is smaller? And my tumor markers were down from 59 to 17? So who knows.... sucks though, I really thought I was feeling so much better that they must have been smaller. In July I was stable.... crap! GG
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Oh, GG, since your tumor markers are so down and you're feeling so good, I wonder if it's just maybe the same sort of thing I ran into a few months ago -- what initially was interpreted as progression by the radiologist was overuled by my onc as actually being healing. I'm obviously not a doc, but it just doesn't seem logical that you could be having progression when your TMs have dropped that dramatically -- really into the normal range. (((Hugs))) Deanna
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Oh Deanna, I hope you're right!! My GP didn't understand it either & I don't have an appt with my onco for 3 weeks & then it's a fill in onco since mine is on sabbatical. I am going to keep good thoughts until then. Thank you so much for posting. Neither my GP or I thought it seemed logical either.... all the pain in my back has gone, I'm feeling better than I have for a year & the tumor markers have gone down 3 times in the last 6 months.
Dee0 -
GG27--I second what Deanna just said. I recently had a scan that showed a significant decrease in my liver mets but more numerous bone activity. The radiologist's report for the scan actually said it was difficult to know if the increase in bone activity was healing or more cancer. It said the increased activity might be healing bone mets that couldn't be seen in the previous scan because they were too small. My understanding is that healing bone will look bigger on the scan than the original met. I also had a significant decrease in my tumor markers (along with the reduction in liver mets) so my oncologist said she was pretty sure the bone mets were healing.
I think the fact that you feel better and your tumor markers have steadily improved (17 is a great number!) are positive signs that the scan is showing healing bone rather than cancer. My oncologist warned me from the beginning that follow up scans of bone mets can be hard to interpret.
Pat
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GG - sending good thoughts your way. I've also been told that the bone scans can be misleading and both healing and mets "light up". Sucks that you have to wait 3 weeks to see the oncologist, but hold good thoughts in your heart (easier said than done).
Mil - The bubble wrap thing is kind of normal, I think. I keep my spine in bubble wrap because one of my vertebrae is so thin and I don't want to hurt my back. It does get better with time...the adjustment to the "new normal" just takes time. And it is hard telling people. If one more person says "you're so brave", I may vomit on their shoes. I'm not particularly brave, just have decided that I can live in depression and fear or not. And mostly, I choose "not". Depression and fear sneak up on me periodically, but for the most part, I just keep on keeping on because I don't know what else to do. You'll get people who say totally stupid things, people who avoid you after you've told them, people who try to wrap you in additional bubble wrap, etc. But you'll also get love, support, and encouragement. So good luck with it all. Took me about three months to admit it "publicly" on my Facebook page and about four months to come back to these boards (I was here during Stage I).
Hugs to all,
Terre0 -
Thank you Pat & Terre for your kind words, it certainly makes me feel much better. It was so hard to hear today that I had progressed.... I pretty much cried all the way home. I think because I was feeling so good & my tumor markers were good that I was sure I was stable & I set myself up. Usually I don't do that.
Because I have to travel for treatment I have 1 main onco who is away right now & then a GP with a specialty in oncology so I'm going to give the secondary one a call tomorrow & just see what his take is on the situation is. I don't know that he will want to weigh in, but I will ask his learned opinion.
I have my pamidronate infusion tomorrow at the hospital so I won't be on the board until late tomorrow night. Thanks all, I so appreciate all the support. Dee
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Hi Eve welcome!
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Welcome 3kayonc3 and Eve. Sorry to have you join us, but welcome all the same. I am also relatively new to being dx at stage 4 and hope we can learn from and help each other. I am only taking Arimidex and get Zometa once a month. I confess the bright side of my stage 4 dx was being told I did not have to do chemo for the time being.
Hi Deanna, I am with you in wishing I had not told a few of the people I did early on. I still don't know what to tell people when they ask why I am walking with a cane. I usually say my old knee problems and new back problems have ganged up on me (basically true), but then I either get questions about or suggestions for treatment. I take it you are walking better now? I know we are all different but I would appreciate hearing what, if any treatment helped you get rid of the cane.
Dee, I am sorry to hear your bone scan showed progression, although it does sound like scan results can be misleading. Hoping your visit to the onc in a couple of weeks will clarify things in a positive way. Glad you are feeling good and staying positive.
I just had my monthly visit with my MO and Zometa drip on Tuesday. Had not had any se's I could attribute to the Zometa on after my 2 previous treatments, but I have really been feeling like crap the last 2 days. Looked at my blood work and see my LDH went from 141 4 weeks ago to 400 U/L this time! BCA 15 3 is the only tumor marker my MO has been checking and it has remained in the normal range 14U. Anyone have any experience with wildly increased LDH? I won't get my first scan since starting treatment until the end of this month.
Hope everyone is having a good, pain free Friday!
Jo
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Hi, Jo ~ Has anyone told you why you need a cane -- I mean actually dx'd what's going on? I'm asking b'cuz when I was experiencing my leg pain, my local onc just shook his head like it was part of the whole mets thing. Then thankfully (I thought) my UCLA onc suggested that we needed to do an MRI because if the pain was coming from a deteriorating disc, I could end up in a wheelchair if it wasn't addressed. But then, as I was waiting for the MRI to be approved and scheduled, one night the pain became truly excruciating -- the kind of pain that had me screaming and crying all at once -- and I had no choice but to go to the ER. Two x-rays into the process -- as I was literally screaming on the x-ray table -- they told me they saw the problem -- I had a fractured femur and a fractured pelvis, which I had been hobbling around on for several weeks. So that's why I'm curious to know if your leg pain has been thoroughly assessed. I thankfully had a wonderful ortho surgeon (he'd done my DH's knee replacement a few months earlier), and he totally replaced my hip and put a rod in my femur, and in the process removed a lot of the bad stuff going on. So barring another pathological fracture due to the mets (which is what my fractures were termed) I'm doing great -- no pain and just cleared @ 6 mos. for any activity. So the bottom line is, don't accept pain an inevitable part of mets because it may be due to something very fixable! (((Hugs))) Deanna
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Good luck Dee. Hopefully it is the healing showing up. It really does sound like it could be that.
My onc was happy with the results she's seeing (shrinking of visible tumors and decrease in tumor marker). I start Xgeva next week.
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dunesleeper,
Great news! I think the AI's can have a powerful effect on bone mets. They've given me 3 great years and a rather normal life (I hope for many more). May you continue to do well.
Caryn
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Finally back home after pamidronate treatment today, a bit achy but not too bad, though I am having a few nerve spasms which they tell me isn't unusual. The GP with a specialty in oncology got back to me today, but he admitted that he really wasn't qualified to speak about the bone scan report, so I will have to wait til the 22nd. But all of you have helped to ease my mind, I can get on with living & not worry about it.
Good to hear Dunesleeper, any time you get tumor shrinkage is a good day. And Jo, I hope that it turns out to be something very fixable like Deanna says & you can get rid of that cane!
Good thoughts to all here for as painfree weekend as possible!!
Dee0 -
Great news Dune! Glad to hear.
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Hello Everyone!
I've been reading through this thread, there is a wealth of information here, thank you all for your posts. I was diagnosed with diffuse bone mets (femur, hip, spine, ribs, skull - urgh) in May of this year, so I'm very new to all of this. I started Arimidex and Xgeva. I have to say that I'm very impressed with the Xgeva, I had an instability feeling in my spine that has completely gone away - maybe it's all in my head, but I feel like my bones are being strengthened.
My onc waited 4 months to order my first post diagnosis scan - she said the AI needs time to work. CT scan says mildly increased bone mets and bone scan says no change?? Onc says stable. It seems that assessing bone mets is not so clear cut, not easily accurately measured. Just another thing to stress us bone mets patients out.
Is anyone doing the COMB (combination of micronutrients for bone health) protocol for bone strengthening? It's fish oil, strontium, Vitamin D, Vitamin K, magnesium (and calcium which I'm not doing b/c of increased calcium levels and daily impact exercise - which is very difficult in our situation, I'm scared of hurting myself). Google the paper if your interested, after 1 year of supplementation bone density increased. Not specifically for cancer, but I figure it can't hurt??
Enjoy the day,
Kim
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Deanna,
Sounds like you had to go through quite an ordeal and a lot of pain, but I'm happy you are doing so well after getting through it. Did all of this, bone mets dx, fracture, and hip replacement happen this year? If so you have been on quite a roller coaster ride!
Yes, I have had an MRI of both my knee, pelvis, and thoratic spine, but neither the ortho doctor that did the knee MRI nor my MO has ever really explained why I can't walk. My back and knee have been painful at times, but even when I am not in a lot of pain I still can't walk well. I was really afraid the problems (all on my left side) might be due to brain mets, but finally had a brain MRI on Tuesday and it was ok. (Huge relief!) I'm considering seeing an orthopedic oncologist but thought I would give the AI and Fosamax a few months to see if they gave me any improvement.
Thanks for the asking,
Jo
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Regarding the whole scan issue, are most here getting bone or/and CT scans to determine progression?
During my initial bone met dx, I had a bone scan first that showed "multiple foci of activity" in the iliac, thoracic and lumbar spine, then got a CT of chest and abdomen that was basically clean. Lastly I had MRIs of pelvis and thoracic spine that showed multiple lesions to pelvis and L2-4 and T5-12 vertebrae "more numerous than seen on bone scan" .
So my impression from my (limited) experience is that MRIs give the most detailed and accurate information. I'm wondering if others have had mets that appeared more numerous on one type of scan vs another and if MRIs are used less just because of cost or some other reason?
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Kim, although not the COMB protocol per se, for approx three years prior to my bone mets dx, I was on a product recommended by my naturopathic doctor called Osteo-Mins A.M. by Progressive Labs, which I think contains all of the nutrients you listed, except for the fish oil. Osteo-Mins A.M. is a supplement you take in the a.m., then take your cal-mag-D3 at night. And I actually had significant improvement in my DexaScans over that period of time -- so much so that I've asked my UCLA onc if that protocol might not be enough without Xgeva -- which she wants me on, but which I haven't started yet, but probably will within the next month, following the recent dental stuff I needed to do first. Anyway, I recently switched to another all-in-one calcium complex supplement by Solaray that doesn't have the strontium, so you can take it all at once; and I've since read on another recent thread here that strontium can actually make the improvement seen on Dexascans appear better than it really is. If you haven't come across that thread, try seaching "Strontium" (to the left here). It has some interesting links on the subject. And my onc said no to supplements in lieu of Xgeva.
Jo, I'm sorry they haven't been able to pinpoint the reason you're having trouble walking. I realize you've had input from two docs, but do you think perhaps another opinion might be worth a try? I've heard of people occasionally going to four of five docs before finding one who can figure out what's going on.
And all I can add about scans is that my UCLA onc once commented that the results of an MRI she'd ordered could not be used for comparison purposes to an earlier CT -- that you have to stick with the same modality when looking for any changes. Also, interpretation of scans can be surprisingly subjective. It's not as black & white as you would think. I also think (but not sure) that MRIs are the less expensive of the 3. Deanna
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