Bone Mets Thread
Comments
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I have had pain/flu problems after my Zometa treatments until last time when the nurse set the infusion for 25 minutes rather than the usual 15. Big difference in the pain.
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Wanderingspirit, tumor markers do fluctuate and the cause may not be from the cancer. Inflammation or infection can also send them up so I wouldn't be too worried yet. Hang with you current onc and don't stress too much about it.
Love n hugs. Chrissy
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Wandering Spirit, I don't know anything about tumor markers but sending you (((hugs))) and hoping with you that it's nothing to worry about.
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Wandering Spirit,
My onc does not go by tumor markers with me. I don't even know what mine are. He does scans every 6 months & 3 months when I have recurrence. Hope yours are stable.
Terri
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WanderSpirit, my MO doesn't even believe in tumor markers- and get this- he spent 20 years of his career working on that specific blood test to make it better. He's highly educated on that test and says it's so inconsistent that it's more drama than it is worth. I kept bugging him asking why he wasn't watching them like all of you on BCO talk about. He showed me that the week after we found my bone mets my tumor markers were totally normal/low. After he showed me that I let it go. So don't put too much stock in that alone.
Donuts wife, I don't know much about tumor flares, but I too have started feeling my lesions since starting Arimidex. I had no back pain before. I'm hoping it's tumor flares, but of course fear that the spots are getting worse and that's why they hurt now.
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My markers were "fine" ( I never actually asked for the numbers) and a few months later I had a bone met and chest wall recurrence. I'm curious what others will weigh in with
Edit: thanks everyone. I just read your responses
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my mo told me that she wasn't concerned unless tumor markers went up a couple hundred points.
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my MO does not change trt until markers go up two times in a row but he does measure monthly. The test has a twenty one percent overall error which you are within so trends are what they look for. You could ask for retest to be in ine month instead of two. Hope this helps
Janet
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Thank you all for your responses and encouragement! I was in despair yesterday! You ladies ROCK!!
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After my bmx my tumor markers were 25.25 when they found the Mets to my hip. Now that I am in remission they are 20.05. My mo says if they go up to 38 we will start chemo again. She checks them every 3 months. I really don't understand about the tumor markers and have looked on the internet and still can't get a clear understanding. It has been explained to me but I still don't get it.
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Yes, I don't understand the tumor markers either, I've googled it but I can't see what the normal range is. Mine had been over 40 and were dropping until three months ago. The lowest mine went to was 24. They've been rising for the last few tests and are now 31 so I'm scared that chemo is failing. Onc said he didn't go by tumor markers but when mine were dropping seemed to consider them positively.
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My onc does do tumor markers, and while the test isn't perfect in every situation, my recent experience is an example of how it can be very helpful -- at least for some of us. Post initial bc tx but prior to my bone mets dx, my CA27-29 was always in the 10 to 12 range. Normal I believe is up to 38, with some leeway for individual variations. But when I went to my onc last December because I'd been extremely sick for several weeks with an illness I could not shake, we were both shocked when my CA27-29 came back at 137.5 -- clearly way out of my normal range -- and an indication something was going on. So as much as people say the CA27-29 is worthless -- and I realize it may be for some people and probably more so when trying to gauge the success of a particular tx early in its course -- in my situation, it was right on in helping us spot a problem, and I'm very glad my onc uses it. Deanna
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My onc tests my CA 15-3, I've never had the CA 27-29 or CA-125 test. Actually I've been googling again and just found this http://www.cancer.org/acs/groups/cid/documents/we... so it would appear that normal is less that 40 for CA27-29 and less than 30 for CA15-3
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I have had the CA 27:29 tumor marker test many times over the last 14 years and until this last March my results have ranged anywhere from 23-39 over all those years. The normal range is 0-38 or 40 depending on the specific lab used. 38 has always been the normal max for the lab my onc uses. In 2005 I had a 5.1cm breast tumor and 23 positive axillary nodes but my TM results were still in the normal range. In 2012 it was one point over normal at 39 but when rechecked a month later, it had dropped down to 27. Results remained normal in 2013.
My most recent TM taken this March was elevated at 51 and that was the same time I was dx with mets. My onc has told me not to be surprised if the TM goes up even higher while starting on new treatment. She said it often elevates when you have dying cancer cells and ultimately will start dropping again if treatment is effective. Of course, TMs that continue to rise may be an indication of treatment failure, but most oncs will base their decisions to switch treatment on scan results or clinical symptoms, not just elevated TMs.
I think that in general TMs are not all that reliable as an indicator of the presence of cancer, unless results are dramatically different than a patient's normal pattern. There are conditions like inflammation and certain medications like NSAIDs that can cause minor changes in TM results. A significant jump above the normal range usually warrants investigation.
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I was dx in late July 2010 with Stage IV MBD (Mestatic Breast Desease). My BC had spread to my bone. liver and lungs and they said I had prpbably had cancer for 10-12 years before they found it! Boy was I in shock as I had had an mamogram every year since I had turned 40. I was 60 at the time of dx, and it was a fluke that they found it then! I had dropped a box of paper that I was putting on the top shelf at work and it hit me in the top of my right breast and made a good sized lunp. I went to my GP and he sent me immediately to a Breast surgeon who looked at the last mamogram from June 2010 and saw nothing so she did a sonogram and still could find nothing even though we could visibly see the lump. She explained all the options to me and asked if I wanted to remove just the right breast of both of them. I chose both of them and she said ok and surgery was scheduled for August 2, 2010. When she got in there she fjound both breast full involved with cancer and the limph node were also involved and removed. The axiliary node on the left was so big and it was hard and matted so she could just scrap way what she could but did not try to remove it since I am left handed and she was afraid that trying to remove it would cause sever damage to the nerves and I would lose the use of my left arm and hand. The right axiliary node was removed. After surgery they did an MRI to see what all was really involved and she said I "lit up like a Christmas tree" and that is when they found out it had spread to my bones, liver and lungs. The prognosis they gave my family was very grim as they did not think I would still be around by Christmas. My daughters both said "You don't know our Mom, if you tell her that she will make a liar out of you and live until you are gone from this earth." Well the did tell me and it is fast apporaching 4 years later and I am still here and most people don't believe there is anything wrong with me unless I am have bad side effects from the oral chemo drugs or the blood thinners. (I seem to be allergic to everything they try to give me or they give me the normal dose and it turns out to be way to big a dose for me.)
All this to say don't believe everything they tell you about survival. I still look awful on paper but I look fine otherwise and I still get to do some of the things I enjoy and have a wonderful family that prays, cares for and supports me.
Joy and blessing,
AJ
oh by the way - my initial tumor marker was a little over 5,000 and yesterday it was 57.7. My onc does the CA 27-29 every month and they have turned out to be a very good indicator of how I am doing and if the current chemo is working or not.
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"I still look awful on paper but I look fine otherwise ..."
Elisimo,
I love that line! I may have to steal it from you.
Caryn
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Elismo - I have to steal that line as well! Although I look better on paper than some of us as I only have bone mets. And good on you for doing what my husband has repeatedly told me to do - "don't buy into the statistics". So happy that you're still with us and doing well! My first oncologist said I would be lucky to have four years, but the new one says 12 to 15 is more what would be expected, and likely longer given the rapid advances in treatment technologies.
As to tumour markers, mine haven't changed at all since the new oncologist started monitoring them. I don't know which test he runs or what the numbers are, but there's been no change. And my mets are stable (inactive in the bones). He said I may be one of the people where tumour markers don't assist with any type of diagnosis. What I've read on the thread above seems to make sense to me. I am an environmental engineer and do water and soil sampling and evaluation of results. There is typically a 10 to 25% variance in results depending on the lab, method, type of analyte, etc. So it would make sense to me that if the variance is relatively small (even if it's up), that it could be just variability of the analysis and nothing to stress about. Going down would be good, in that it means that it's either stable (could be a +/- 25% under-reporting) or actually decreasing. Going up within the statistically expected variation would not be cause for concern. If it went up by an amount well beyond the bounds of the expected variation, then it could be cause for looking more closely. However, as noted above, this could be the result of an inflammation or infection, and not cancer. So I would guess that for those who's tumour markers are a good indicator, that it is an effective tool to determine whether large-scale changes are happening. But it's not generally finely tuned and a slight increase would not be cause for undue concern.
Just my take on things!
Take care and hugs to all,
Terre0 -
today I had my cycle three day one apt for paloma3 which meant there were scan results to review. Interestingly I learned that my mo does not put much stock in scans other than as a way to id new areas of disease. He definitely doesn't think much of the measurements and thinks they are very subjective. He tends to go by TM and switched my trt when my TM went up two months in a row. In fact, comparing the scan to the original, it showed healing in my bones but he said that had probably happened in the beginning. So it seems that all oncologists are different and the KEY is to be sure you trust your mo. If you don't maybe look for another
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WanderingSpirit, elevated tumor markers are not reliable indicators of cancer progression. If you are looking at copies of your blood tests, you should see a disclaimer that states this. I know that some cancer patients believe this, because their doctors act like the markers are reliable, or because they notice a pattern in the markers that correlates to their health. But neither appears to be true in your case. Cancer is not one beast but many, and what tames it is not one drug, but many. Your PET scans will be the best indicator of what the cancer is doing, not the tumor markers and that's why your doctor isn't running around like his hair is on fire at the news of your tumor markers. BTW if your doctor isn't one to pay attention to tumor markers, then why are you given the results beforehand? So that you can worry? Another issue for you, I think, is that your hospital has undergone some staff changes, good doctors are leaving, etc. I can tell that concerns you, and you're probably worried about what will happen if there IS progression. Instead of just worrying until your next PET scan, maybe now is a good time to meet other oncologists in the practice. Either by setting up consults, or even just asking other patients or even nurses about them. (I believe patients can do more to find an oncologist they are comfortable with. I get antsy when I see people newly diagnosed choose their oncologist based on whoever can see them next, and then take that doctor's word as gospel. Not referring to you, of course.) If you trust your oncologist, it's still good to find another oncologist or two for second opinions. And, if you think you want to change oncologists, this change in tumor markers is a perfect opportunity/excuse to shop around. I've only been Stage IV a little longer than you, but I can tell you that for me, things got better, then worse, then better, then worse, as a general rule. I thought I would be headed in only one direction on this "journey" as they call it, but I'm up and down the highway, driving on sidewalks, speeding on access roads, etc. ;-) And finally, it's not accurate to say Arimidex failed, even if those tumor markers did guess right, and your cancer has progressed. You have not had progression since you were put on Arimidex 11 months ago, right? There are Stage IV ladies here who would LOVE to have a year of no progression. I'm not saying you aren't grateful. I am saying, you've had a year on Arimidex and that's a good run, and you may have many more years on it. That's TBD (to be determined), but I hope you can stay on it. This post is a little long, I'm on heavy morphine because of surgery so I hope I made a little sense.
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Hi all,
I've been asked to speak at a Pink Ribbon breakfast in a few weeks. They want to hear my story, which is quite an honour. I'd like to hear from you as well and tell not just my story, but our stories. . One thing that was brought up is that people don't know how to react when they're told someone has advanced stage BC. What's the best thing(s) said to you? What helps you the most? If you were asked to tell your story in a few lines, what are the most important things you would say? What's been the hardest thing for your family?
Any ideas welcome; I know we all experience this differently, and that's kind of what I'd like to tell these folks and give them some snippets of others' experiences.
Hopefully this all makes sense!
Terre
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@KiwiCatMom. The best thing for me is if people ask me how I feel/am. I hate it when people start quizzing me on how could I possibly be stage iv from the initial diagnosis, asking if I was getting annual mammograms as if it was somehow my fault that in my case the cancer was not found "early". Next worst is when they start either asking me why I don't look sicker or why I have not lost my hair etc. and or telling me their latest miracle cure food. It has been a surprise which of my friends were the ones who have stuck with me and both treated me normally continuing ti share and interact as we always have while asking every now and then how I feel and which have been insensitive and unable to get beyond their own needs for reassurance that this won't happen to them or their need to control the situation by "curing" me with home remedies. I have one or two friends who are really great because they understand that it is hard to be upbeat ALL the time and they will let me talk sometimes about my fears and how sometimes I get overwhelmed and that even though I am doing well on treatment and I don't look sick I do know that someday I will have to move to ?IV chemo...I just don't know when. This was particularly hard when I had my first progression so it was good to have a friend I could talk to. I am a single mom so I don't have a big family to discuss with. In someways this makes everything easier but at times it is lonely trying to figure things out alone or just needing someone to hug you and provide reassurance that you will not be "alone" when the really tough treatments start or when you have to make the H decision.
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Thank you for asking about everyone else KiwiCatMom, it's very thoughtful of you to include us.
I think the worst thing for me is the fear, not knowing what I will need to face, or when. I read awhile ago that the mental part of stage 1V is almost as bad as the physical. I also hate being told how good I look, as though I can't be suffering. Just being asked how I'm doing is all I really want people to do. The people that I thought were friends that have ignored me completely hurts the most. Saying the wrong thing is better than saying nothing at all. I got a couple cards in the mail from people I didn't even know very well, and that touched me.
I really don't mind being told about the miracle cures- it shows you're thinking about me. I'm not religious but again, being told you're praying for me makes me appreciate the good energy.
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The first months after diagnosis were so difficult, and when others became overly-emotional, it was hard on me. One day my older brother came to the house and just simply visited for three hours. Tho we touched on the cancer subject, he just put me at ease and my husband and I talked to him about all manner of things. He wasn't all broken up, crying, carrying on and making me feel like I was on death's door.
Also, one evening while my husband and I were in the living room and I was having a small melt-down, he said, "I'm here for you, honey." He didn't get out of his lazy boy chair or get emotional. It was just comforting for him to tell me that, even tho I knew he was here for me, it helped to hear those exact words.
One more thing...a nurse at the breast surgeon's office was doing some paperwork on my upcoming surgery and at one point, she walked over to me to hand me a clipboard with a form on it to sign. When she did, she rested her hand on my shoulder with a slight pressure for a couple of seconds. She didn't say anything, but I have never forgotten that warm human touch of someone who seemed to care.
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I agree, it is so kind of you to ask us for out input. Thank you!
I would appreciate if people just did the helpful things they want to do instead of asking me what they can do. Make sense? I don't really know what people are good at. Some like to cook, some like kids, some are happy running errands. I can't manage a group of people by telling them what to do (or not to do) If someone just said "hey I'll be over Tues night with dinner, if your not home it will be on the porch." Or "I'm gonna stop and get you some milk and bread need anything else?" That is more helpful then "what can I do? Just tell me what to do." It's so hard to make decisions everyday with all the medical stuff and my kids that someone just pulling in the reigns is huge to me.
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Terrie, how nice that you've been invited to share your story like this! And kind of you to ask us, too. I've been thinking about it, and I'd have to say, the single thing that drives me mad is other people (ok, one other person in my extended family) who constantly minimizes what's going on. Basically, if you can't tell that "I'm sure it's nothing" is not the same thing as "I hope it's nothing" then you probably aren't going to be as comforting as you think you are. And that goes double if you're trying to prove it's no big deal because you asked Dr. Google (triple if you follow the dismissiveness with details about your own life complaints!).
On the other hand, people who are just there for you: a hug, a card, "I'm praying for you" or "I'm thinking about you" are golden.
Also, I don't think most people realize how much time cancer can take up. And, at least for me, stage IV has me looking at everything through the lens of time left and priorities. Sometimes people want to help by offering things that take time away from my family or offering things that make extra work for me or offering things that require me to coordinate in ways that take up more mental energy than I want to give to it--I appreciate the caring thought but don't be offended if I decline.
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Wow! Thank you so much for the fantastic responses! And keep them coming - this breakfast isn't until the 23rd.
There's some really good advice/information which I'll share. I have many of the same feelings and thoughts. I will undoubtedly write up some notes and will share them here so you can see what I'm doing with the info.
I'm humbled and overwhelmed by you all sharing your thoughts and feelings.
Terre
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Terre, a BCO member, Ann Silberman (aka CoolBreeze here) has a blog entitled, Breast Cancer? But Doctor... I hate pink! She just posted a great piece about the lack of understanding about MBC, largely because of all the emphasis on "awareness." I don't know if, as written, her points are on target for where you'll be speaking. But since they want to hear your story, I wondered if anything in her piece might be helpful to you. Deanna
http://www.healthline.com/health/breast-cancer/turn-from-awareness-to-research
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Yes, the mental part is a bear. I have done well, physically, so far. Except for those in my family, very few are aware of how bc has impacted my life because I look "normal". I would like people to ask me questions, not just to be polite, but to really understand. Then I would really like them to listen to my answers. I realize that cancer is a scary boogeyman, and others see it through the lens of their own experience, but if you ask real questions, be prepared for real answers and don't make me comfort you or ease your grief. I am the one who has cancer! On the topic of praying; I am not a Christian, will never become a Christian and believe that my health will wax or wane irrespective of that. Your positive thoughts and good wishes are greatly appreciated, but I do not need to believe in your flavor of religion to have the best outcome or life I can. I do not mean to single out Christians, but in my personal experience, those are the only people who have ever felt I needed to be "saved".
I never mind speaking about my bc or answering questions. Just listen to me and remember that this is about me and my health!
Caryn (in a curmudgeonly mood today)
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The one thing that bothers me is being Stage 4 and in remission. Don't get me wrong I am so happy to be Ned but I am scared all the time. Every little ache and pain I internalize that is is the cancer coming back. I really don't like to feel this way and my family doesn't understand. They tell me you are cured you don't have cancer, but I don't feel the same way. I guess this probably stems from having both of my parents pass away with cancer. I have been trying to live my life not thinking about cancer but it is so hard. When I am happy it is always there in the back of my mind if and when is it coming back.
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(Caryn, I don't want to derail this at all, but I'm curious. Does it bother you when people say they're praying for you or just when they try and make you believe yourself? I am a Christian and I often tell people I'm praying for them because I am and I hope it conveys the concern I feel because I believe in it, but maybe it just come across as pushing my religion? Thanks!)
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