Bone Mets Thread
Comments
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Twofer I would be glad to send you Melatonin at no charge, if you want just message me your address. I have followed this group for a couple months, I was diagnosis with recurrence after 20 years. I am still going through the tests and have surgery for double mastectomy Feb 6. Not sure what I am up against but following all of you have given me the courage to face what comes as all of you have. You are all incredible women, it takes strength to face the challenges this disease brings in spades, you all have it. I would be happy to help any of you any way I could, I believe it is in the support that comes the miracles. I will continue to follow you, sending nothing but positive thoughts.0 -
Hi all,
I am way far behind. Beautiful tree, Annie. Beautiful outlook/view, NY!
Momallthetime - I don't know if it's still true, but when my mom had cancer, I called MD Anderson, they put me in touch with a nurse (I think I may have had to leave a message and she called me back), and the nurse gave me all the info I needed with regard to criteria, next steps, etc, to get into MD Anderson for an evaluation. So..I'd just give them a call. Good on you for getting proactive!
Thanks again to all for the kind thoughts. Hubby is home and doing well. He's been (almost) diagnosed with congestive heart failure. They haven't done an echocardiogram yet; that will be scheduled for the new year. The sores on his feet and legs are healing. A District Nurse will come to the house tomorrow and change the dressing on his foot. He's still being a grumpy gus...his doc says he's "wrestling with this diagnosis emotionally". And doing it alone, sad to say. His best friend just had a heart attack and is doing well, and getting counselling, so I'm hoping he can talk hubby into getting some counselling too. We'll see!
Had a nice dinner with friends over today. Very laid back and quiet. And...my tree is below...even though we're in NZ not Australia!
Hugs and happy holidays to all!
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hey ladies mom finished chemo but now on to lifelong infusions of hercptin/perjeta/zometa
any tips on getting through lifelong infusions
wishing you all well
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Jmo06: I'm stage IV from the get go in 6/09 with bone mets. Lifelong actually means as long as drug is working. I may have to switch to Xgeva shots since I've been getting more & more bone mets after 5 years with Zometa. Sometimes they will have to stop a drug if it's not working anymore, even herceptin, but they usually find something else to replace it.
Terri
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I hope everyone had a wonderful Christmas. We sure did!
Momallthetime, I'm not sure I understand your questions, but as far as seeing bald ppl, I'm afraid that (as well as other very sick ppl who may not be bald) is going to be true at any major medical center because of the volume of patients they see and the fact that they are sought out by patients with more dire health conditions. That's just the way it is. UCLA has a similar patient demographic, but they have extraordinary docs who are on the leading-edge of research, as well as many more programs and services than my local hospital, so I guess I've always viewed it as a necessary trade-off. I'm also wondering if your daughter's feelings have something to do with denial, which certainly is understandable, and may benefit from the psychological counseling that is wrapped into care at major places (at least that's true @ UCLA).
Of course MSK is well known as a top place for bc, but if your daughter is relucant to go there, there's also Columbia and NYU, which are also NCI-designated. So with 3 top options in your back yard, so to speak, I don't see any reason to even think about MDAnderson, which, from what I've heard, can be difficult to get into quickly.
Love the NYC photo, NYChutzpah, and the photo of your pretty tree, Annie!
Glad to hear hubby is home, Terre! Yes, even after going through bc with us, I know hubbies tend to freak out when they get their own health scares! Mine recently got a recommendation from our ND to see a cardiologist, and he was an absolute bear to live with for about two weeks. Then the fear eased and he still hasn't made that appt (claims he's waiting for 2015), but I can empathize with what your hubby is going through, especially in view of his friend's experience. (((Hugs))) to you and everyone else! Deanna
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I guess I've officially made the switch to a new oncologist and treatment center. I'm scheduled for a PET CT on the 2nd. The Xgeva shot will either be that day or the following week. She also wants me to have labs done again, for her. This is good because I really want to know if the anastrazole is keeping it in check. I've had pain where I don't usually have pain. I'm particularly interested in the vertebrae. I'm sure that's one of the most worrisome place for us all. Of course I'd also like to be reassured it's not in my organs. So ..... no caffeine, alcohol, or sweets on New Year's Day. Whoops.
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Terre, give hubby a big hug from us. Also, I love your tree. LOL
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thanks ibcmets
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Since my Stage IV diagnosis, I have noticed some odd changes in my behavior. There are some changes that we probably all expect. However, some are really weird. There are two, which are so similar they are likely one. I never had good jewelry. I wasn't really interested. Now I hate the cheap, discolored stuff I've had. I've bought several gold chains, pendants, and earrings lately. The same is happening with clothes. I've always been a jeans and sweatshirt girl. Now I want soft, sheer, flowing things. Anyone else notice odd changes?
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I can't say that these exact changes have happened since bc, but I do find I indulge myself more than I did at an earlier age. This could also be in part since I no longer have to think about the financial well being of anyone but myself (children are both grown and married). I own my own home, have a nice chunk in investments, on top of my eventual pension and figure that I may as well enjoy now while I still can. I also treat my daughters and granddaughter to all kinds of nice things. I don't think it's different than what I would have done, in terms of material things, just a bit accelerated :
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Dune, before my stage 4 dx, I had a lot of anxiety and small bouts of slight depression. I had a major depression after the passing of my hd in 2008 for about 1 year. Weird thing is now I have no anxiety (except when waiting for results of scans etc. of course!) and not depressed at all. I indulge more in material stuff but not that much.Linda
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That's really nice Linda. I have managed to hang on to my depression and anxiety. Sometimes I just want to slap myself for wasting so much time just laying in bed. And I don't know if that feeling we get waiting for scans qualifies as anxiety. That's just plain out fear -- or nervousness.
It's also nice for you Caryn, that you can indulge yourself and your family comfortably.
This thing with me I just do not understand. I should be becoming less materialistic and more spiritual. Spiritually, I am searching but wobbling all over the place. This materialism kind of disgusts me. Things and money just never meant anything to me. Acquiring these things now is just stupid. Somehow (I think) wearing nicer things is mixed up with becoming a better person. I will definitely ask my psychologist about it. Meanwhile, I am taking a break from acquiring things.
Thanks for taking the time to answer.
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kiwi catmom- love your xmas tree! Oregon grows Christmas trees like Iowa grows corn! They are everywhere and cheap.
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For me, the thing with material possessions has to do with truly enjoying the beauty or pleasure I get from certain things. These things don't rule me nor do they define me. They most definitely are not acquired to impress others. But the beauty of something well crafted, the pleasure of fine food or the joy of travel and adventure, well that is part of the joy of living for me. I have deep spiritual beliefs, but they don't preclude pleasure in the material life, for me. Yes, some find spirituality in the aesthetic life but it's important to realize what works for you and go with it.
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My biggest change is that I don't want to be alone. I used to love the weekends when my husband would spend the weekend with "the guys". Now I can't stand my own company! Hopefully that will change as the weather warms and I can get out more. Being home alone depresses me.
As for the material...I stopped buying things after my diagnosis. Our planned kitchen remodel is on hold again, this time indefinitely. People keep giving me things...stuffed animals, scarves, craft supplies, craft books, puzzles...I'm thankful that they are thinking if me, but I stress about where to put it all. I want to lighten my load. I knew even before my dx that I needed to get rid of stuff. My space feels too cluttered.
However, right after I started chemo my husband and I went to an art show and I fell in love with a painting of a green heron. It reminded of the mornings that I took my camera to my favorite pond and watched them catch their breakfast. It was expensive, but I would have bought it in better times. A few days later I came downstairs in the morning and the painting was on the wall. I've never cried so hard. My husband had sold some of his things and tracked down the artist and bought it for me. It makes me happy every time I see it, not just because of its beauty but also because of the act oflove that brought it to me.
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Dune, I hope your new pain is just a SE of Arimidex and good luck with your new Onc and PET scan.I'm perplexed with the latest report of my bone scan. I saw my Onc last on Tuesday and she gave me copies of all the latest tests. On the bone scan, it says L1 unchanged but probably a met. I mentioned to my Onc that L1 was never mentioned before, neither on bone scan nor on scans and PET. She reviewed all the reports and indeed was never mentioned. I find this odd, she doesn't seem worried, but I am. She requested an Xray which will be done beginning of January. My pubic bone is so badly damaged and as per radiologist's report, "barely no visible bone tissue with non-displaced pathological fracture and high risk of fracture". I have an appt with ortho on 6 Jan for opinion as I am planning a trip. Calcium levels creeping up over normal levels (blood test beginning of Jan) but TMs stable. All other mets stable. Sorry for rambling on, I guess I just need to put this in writing to people who understand. I managed to keep this out of my mind during Xmas, but not now. I guess I'm just not ready to move on to the next tx.
Linda
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Dune, maybe your new desire for material things is due to the longing we feel for more life after a stage 4 dx? While material things are only a part of this world, they are easier to acquire than travel, friends, experiences, etc. Do you enjoy the things you are buying after you have them? If they bring you even a small amount of pleasure, I say go for it!I'm like you Dune, was always just a jeans gal. Lately jeans are just not very comfortable any more. I do find myself trying to dress a little better, mainly because I have this idea that people (store clerks, medical staff, etc.) will be nicer to me if I don't look like an old bum as I hobble along with my cane!
Shutterbug, that is such a beautiful story! Made me tear right up too! What a wonderful DH you have, no wonder you want him near you more of the time.
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LindaE,I just reviewed all my reports from previous imaging and noticed something similar, my PET mentions mets at T2 & T3 at the same time it says the lumbar region appears stable. These are just about the only thoracic vertebrae NOT called out as having mets on my MRIs. Huh? I also noticed my initial MRI reports were much more detailed as to where mets were seen compared to the 3 mo. follow-up MRI where the radiologist was much more general in his description, ie thoracic mets unchanged, pelvic mets appear slightly larger. Not sure if this is because it was a follow-up or just because it was a different radiologist reading the imaging. I am not terribly concerned about the differences, just worth noting. I am going to get copies of the actual imaging at my next mo visit.
Your pelvic met sounds much more concerning. I hope you will get some clarification (and hopefully some reassurance) from your ortho doc in a few weeks. My understanding is that it is difficult to tell mets from healing bone on a bone scan, so fingers crossed (!) this is not as bad as it sounds and won't affect your planned trip or tx. Sounds like you are otherwise stable, so that is encouraging, yes?
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After 45 months on arimidex for stage IV bc with pleural mets, the beast has set up housekeeping in my right shoulder blade and I'm on to Faslodex (and soon to add Zometa). We had kind of suspected something was going on because my tumor markers were up just a bit and alkaline phosphatase has been high for months. Nothing showed up on CT or bone scans until a CT in early December showed an osteolytic lesion. Since then I've had another bone scan that showed no other spots, and a biopsy (waiting for results).
I've been skipping through the bone mets thread and there's lots of good info, but I have a few questions:
1. Is radiation only to control pain? Mine does't hurt, but I wondered if it helped control further spread.
2. For those of you diagnosed with solitary bone mets, where were they and how long have they remained solitary?
Thanks for your help.
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Good morning. Jobur, I enjoy some of the stuff but want to kick myself for others. Example, gold chains. I knew nothing of gold chains so bought a few and they are thin - however the singapore style catches the light nicely. So I will have to buy a thicker one after I save for it. I wear it just for me as well as when I go out, so that tells me I'm not doing it to show off, though if someone wants to comment on it, I'm not averse to that. I can't wear the earrings when Dusty is on my shoulder. He quite likes gold and I have his beak mark in one earring to prove it. LOL Talking about it like this I think this is coming from a life of depression and feeling less than others. Thanks.
Linda, I guess we all understand your feeling about moving on to the next treatment. I want each treatment to last forever. The doc said something about wanting to put off chemo as long as possible. Yeah, duh, since it is currently at the bottom of their bag of tricks! I wish you the best and hope someone will explain the situation more completely.
Shutterbug, your green heron painting story was so heart-warming! In fact I got warm all over. Oh,but that was a hot flash. Seriously though, that is an amazing story and a wonderful gift and effort by your husband!
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Hi carpe diem. Great name! I know the ladies will weigh in on your questions. I never had a solitary bone met or radiation. From what I've been able to gather the radiation is mostly for pain, but I think someone had it to their vertebrae to prevent further damage to that. Was it annieoakley? With the cyberknife? Forgive me. My brain is swiss cheese.
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Jobur, thank you very much. Really sweet of you to go through all your reports! And yes encouraging as everything else is stable.
Carpe diem - so sorry about your progression. I can only speak from my own experience re rads. My medical team says it is only for pain relief (which works very well). The only time I had rads for unrelated pain was on my femur because after surgery to have rod inserted, the bone needed to be consolidated.
Dune - keep that little Dusty in check. My big old dog and my cat keep me sane at times....
Linda
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carpediem,
I am sorry to hear if your progression. No, rads is not for pain relief alone! I had a solitary met to my upper femur, no pain or other symptoms. I had rads x15 with the intent of killing the little bugger and it did! That was 3 1/2 years ago and the met is dead as can be with no further mets anywhere else. I have never had chemo, just AI's. I don't know why some docs say that rads to bone mets are only for pain relief unless location presents a problem. I really credit rads with being a major reason for my doing so well. Take care
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Thanks for all the responses. My onc seems to be in the radiation for pain or to prevent fracture camp, but she's generally open to discussion. She originally was opposed dot the biopsy, since my my pleural mets had been studied, but came around after considering that I'd had two other cancers and it might be nice to rule out other possibilities before forging ahead with Faslodex. I thought it was almost certainly bc, but I want to know if the hormone sensitivity has changed, and she also agreed to FoundationOne testing for genomic variations. It's never made a lot of sense to me to just say that this is the treatment we'll try next without learning all you can about what you're treating.
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Wonderful story about the heron painting, Shutterbug! Thanks for sharing it.
Dune, I wonder if your gold jewelry splurging is as much about, "If not now, when," than anything deeper? I haven't bought anything overly expensive since my mets dx, but I am so much quicker to pull out my best china and wear my nicer clothes every day, not just on days when I have somewhere to go. Like jobur, I am also very picky about what I wear when I have a medical appt. I seriously doubt if docs or their staffs treat anyone differently based on what they're wearing, but I do think questioning them keeps them on their toes, and I just feel more together and on a par with them when I'm better dressed. As far as spending, the only thing I can think of that I splurged on recently was a $48 foundation, but it took me a lot of research and a long time to break down and spend that much, which I felt I needed to do because of the havoc Anastrazole is wreaking on my skin. But I do think that your jewelry buying might just be a a bit of living more in the present, rather than saving wants for a distant someday.
So sorry about the progression, carpe diem. I hope whatever tx you decide to do will nip it quickly and completely!
Hugs to all, and once again, where is Chrissy? I haven't checked to see if she's posting elsewhere, but I do worry about her when I don't see her here. Deanna
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LindaE, Sorry, I am not that nice, re going back through my reports. I was trying to consolidate my full list of met locations last night as I am (STILL!) trying to get an answer for my gimpy left leg. Finally had an EMG that showed my femoral nerve is being pinched, but have yet to find a doc to point to where it is impinged or what can be done to fix it. Strongly suspect one of my many mets, but keep being told they can't see anything in my imaging, so made the list for myself to try and find a met that might be affecting this nerve. (sorry for the long explanation, should have just let you think I'm really sweet, ha ha!)Caryn, For a single bone met, I can understand an mo's trying rads to attempt to kill the cancer, but with multiple or widespread bone mets the intent of rads seems to be strictly palliative. Obviously, you can't (or anyway wouldn't want to) radiate the entire spine, pelvis, femur, etc.
Carpe, Sounds like you are on top of things! I agree it makes sense to get as much information as possible before deciding on a tx plan. For example, I got the impression from reading some of the articles from the San Antonio BC conference that it is possible that HER2 expression may change after some period of treatment. Looks like you got a nice long run on Arimidex, hope your next tx does the same!
Dune, you'll have to be careful with Dusty around all that pretty gold! I'll bet she/he could permanently remodel your earlobe if he/she didn't love you!
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Dune, I also wonder if your change in spending/dressing is part of "if not now, when?" since I'm doing a lot of the same thing. What am I waiting for?
Leah
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"Caryn, For a single bone met, I can understand an mo's trying rads to attempt to kill the cancer, but with multiple or widespread bone mets the intent of rads seems to be strictly palliative. Obviously, you can't (or anyway wouldn't want to) radiate the entire spine, pelvis, femur, etc."
Yes, I understand that there is a limit to the number/size of areas that can be radiated, but if radiation is commonly used for pain relief, on more than one area, I don't fully understand why it isn't used more often with intent to render the met necrotic. Then again, I'm not a radiation onc, so what do I know
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I wondered the same thing. My MO told me last week that I wasn't in enough pain yet to have rads, although the last few days have been bad. I didn't think to ask why they couldn't be radiated anyway. I will certainly ask when I see her in February. Maybe the thinking is that the anastrozole will kill them? So why do the rads too? I too, am not a RO, but would be interesting to know. Dee
BTW, hope everyone had a lovely holiday, whatever you celebrate! -D
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gg27,
I had rads to my met almost immediately after starting Anastrozole. I think I had my first PET scan about 2 months after that . Met was completely necrotic, but of course, it would be impossible to say if it was the rads or the Anastrozole or a happy combination of the two. My met was discovered by accident without so much as a twinge of pain but my mo sent me to the RO who recommended rads straight away. Wish I could figure out why there are so many differences and approaches to bc mets. I know we are individuals and want individualized tx, but sometimes I think there should be more commonalities
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