Bone Mets Thread
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Hi Chef,
Be as "freaky" as you like. There is a steep learning curve to a Stage IV diagnosis. We've all been there and are more than happy to answer your questions.
I was initially diagnosed with pleural effusion, mets to the pleural lining of my lung. It does not appear that I have any nodes in my lung but it's a bit tricky to tell as my right lung has a lot of adhesions and consolidation which can obscure the view. I also have diffuse sclerotic bone mets (which essentially means bone mets all over the place). More recently, the cancer spread to the lining of my gut around the capsule of the liver. So far it's not in my liver.
In terms of treatments, others may want to chime in but it doesn't seem to make a lot of difference where the mets are. If you are ER+ then the first line is often endocrine therapy of one type or another. However, I started with Taxol as my MO hoped it would beat the cancer in my lung back so that I did not have so much fluid. (Didn't work though.) If you have a lot of disease, causing lots of symptoms they seem to prefer chemo as it usually acts quicker. Endocrine/hormone therapy should work no matter where Mr. Cancer is hiding. Chemotherapies do seem to have favored organs. I believe Xeloda, for instance, works well on the liver. In particular, there are certain chemos that are favored if the mets go to the brain as not all will cross the blood/brain barrier.
So, I would say no, the treatment is not much different if you have mets in multiple sites. (Although the exception would be if you have a single site, referred to as oligometastic - this may involved more localized treatment to try to eradicate the cancer.) Oncologists have a large variety of treatments to help us and will cycle through the options depending on how your cancer responds.
Hope this is helpful.
Pat (2)
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Z, glad to hear that despite the sinus trauma you were able to complete the SBRT though your trip home sounds like nothing short of a nightmare. Zometa can definitely give you the flu like symptoms especially in your first few doses. In my case, the second dose was worse than the first in terms of symptoms but now after nearly three years on Zometa every 4 months, I get almost no side effects. I reckon that's what caused your symptoms during your travels. Regarding the upper chest pain that you have, it sounds like it could be inflammation from the SBRT. As you know, I had my SBRT about a week before you and I had some aches in my low back in the vicinity of my rads but definitely outside the field of radiation. In my case, I wouldn't call it pain but more of a muscle tingling sensation. It lasted several days. Also, my doc said that inflammation following rads was common which is why they gave me a steroid before the treatment. It makes sense to me and perhaps could explain your pain as well but do keep an eye on it
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KJoel - Just have time for a quick response to you ... I have a lot of issues with chemo, but I would go for chemo in a heartbeat in your situation. When cancer is that widespread and moving, you simply have to control it. If they want to give you taxol class chemo, which would probably be a good idea, demand (politely) abraxane.
>Z<
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thank you sadiesservant:) something I feel like I’ve noticed is there seems to be more “choices” , where with my initial bc diagnosis it was cut and dry, no choices, just surgery, chemo, rads, tamoxifen. Now with stage 4 I read a lot of “make sure and ask for this or that” or “see if they will let you do this or that” (meds or treatments that I can’t name) how do you learn all this stuff? So I’m guessing there’s no real protocol at this stage? Also a week or so ago when this all started I read somewhere that chemo is saved as a last resort? I feel kind of doomed now if they start me out with that:/ my onc has mentioned it as a possibility, he’s just being so vague right now. I know the surgery is the more urgent though. The only positive news I’ve heard, which lifted a huge sense of doom was the surgeon said there were 2 surgery options, one which didn’t last but a year or two and the other which lasts pretty much a lifetime, and said “so obviously we need to give you the longest lasting one” 😅😅😅😅it was unbelievable how much that meant!!!!
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Chef, one thing that I should have mentioned, Bestbird put together a guide which outlines the treatment options, etc. If you look her up on the site she will tell you how to get a copy. It's very helpful in sorting through the treatment options and things you should consider. There is a protocol of sorts but, it will vary depending on your situation.
Chemo is definitely not a last resort. I started with chemo, switched to an aromatase inhibitor, switched to an oral chemo and am now on Faslodex. We just keep tweaking and trying things to find the one that will give me a longer run.
Sounds like your surgeon is a keeper! Pat
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Chef47, you’re correct about having more options but there is a standard protocol too. I was dxd stage iv de novo in Nov. 2016 with a single bone met, had neoadjuvent chemo, surgery, rads and tamoxifen. Then 5 tiny brain mets were discovered a few months ago, had gamma knife rads to those. All good so far, bone met is stable and 4/5 brain mets have disappeared. You’ll learn lots as you go and hopefully you’ll find your BC is manageable at this stage too
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I received a PM from Aurora (Auroaya) today. She wanted me to pass along a message from her. As some of you know, she recently had progression to her brain, and she has not had a good response to treatment. Her MBC continues to spread. It has become difficult for her to manage by herself, and she is meeting with hospice tomorrow. Although she hasn't posted here as much lately, I know that people who have been on the bone mets thread for a while will remember her kind, encouraging,supportive posts. Please keep her in your prayers.
Hugs and prayers from, Lynne
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Will do 50’s, sorry to hear that. I think she was pretty involved in the abraxane thread too, correct?
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Hi all! I went to the dr today because I have a hard, movable, oblong knot on my right rib cage that is approximately 1 & a half inches long by half inch wide. It hurts in that area. They did X-ray but couldn't get it read today and she said they may need to order an ultrasound to really see what it is. Anyone else had this and it turn out to be mets? I've seen where some women have had subcutaneous mets. Anyone here, please let me know what your signs were
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Chef--
I am like you----I continue to have a lot of questions. I was diagnosed in June with what we thought was Stage 2, but then found out it was Stage 4 3 months later ( was Stage 4 from the beginning we just didn't know that ). At Stage 2 I was given a Port and started chemo. When we found out mets to liver and bone stopped chemo and started Tamoxfen then switched to Lupron/Letrazole/Ibrance. I asked my MO if we were going to remove Port and he said to keep it in for when we need to go back to chemo. I, like you, thought chemo is for later/last resort. It is very confusing, I think. Of course, I want to stay away from chemo as long as I can with the hair loss, nausea, etc. The pills I am using now have side effects I can handle. But what is the best treatment options to kill out these cancer cells?? I am "freaky" about this too and have been dealing with it for 7 months----oh my. Ask all the questions you want and we can help eachother.
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Chef, I had IV chemo initially (adriamycin/cytoxan) as I was in a crisis situation when diagnosed Stage IV..couldn't breathe. I kept my port for the future, but now stable on Ibrance/ Femara. I have adjusted to my new normal. But overall, my days are fine. When the cancer outsmarts your current treatment, be ready to discuss next options with your MO. It is our reality, but life can still be wonderful..you will find your joy again. Keep in contact with us, we will help you.
Search for Bestbird under BCO and request her latest copy of MBC guide. She provides an email address. I keep a notebook with info, bookmark sites and also have a computer folder with copious notes.
50's..my heart hurts for Aurora.Thank you relaying that info.
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Chef - the protocol in the beginning is pretty standard. You work through endocrine therapies as long as you can. You can add CDK 4/6 inhibitors and add other targeted therapies (mTOR, ATk, PI3k inhibitors) to endocrine therapies to make them last a bit longer. Then you get into chemos. There are commonly used chemos (taxanes, gemzar, halavan, other stuff) but fewer standards as to order, dosing, etc. Then there are trials and off label drugs and complementary oncology and re-challenging the cancer with drugs you've tried previously ...and the woods become dark and deep. In any case, things are more standardized in the beginning and that buys you time to learn.
The place to start is by contacting BestBird and getting her Insiders Guide To MBC. She covers the basics as well as the details better then anyone and keeps her guide updated in real time. Any book you buy will be out of date by the time it prints. She has a process for requesting the guide that she explains in this thread.
I've read the MBC guide. I spend hours reading and studying. I maintain an evolving roadmap of my treatment options. But every time I progress and change treatments I have a panic attack and I can't think straight. I come here and ask questions. . My strategy is to be as useful as possible to everyone here so that when I need help I can get it. Working so far.
Not a simple business in many respects.
>Z<
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Chef, I had IV chemo initially (adriamycin/cytoxan) as I was in a crisis situation when diagnosed Stage IV..couldn't breathe. I kept my port for the future, but now stable on Ibrance/ Femara. I have adjusted to my new normal. But overall, my days are fine. When the cancer outsmarts your current treatment, be ready to discuss next options with your MO. It is our reality, but life can still be wonderful..you will find your joy again. Keep in contact with us, we will help you.
Search for Bestbird under BCO and request her latest copy of MBC guide. She provides an email address. I keep a notebook with info, bookmark sites and also have a computer folder with copious notes.
50's..my heart hurts for Aurora.Thank you relaying that info.
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Z, wondering if you might have developed pleurisy from all the coughing? That happened to me once. Not fun, but treatable. Does it hurt to take a deep breath? Check Dr Google on the symptoms and treatments for that. I am sending you a very gentle hug.
Chef, you will eventually get to a better place mentally. I agree with all previous posts, get the guide. It will become your bible. Post here with any and all questions, this is a marathon, not a sprint. Trust me, I am almost 6 years into this sh$tstorm called cancer.
Hugs and prayers,
Claudia
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Thanks for everyone’s responses. Last week was really challenging for me and I’m trying to come out of the shock of being stage IV de nuvo at age 31.
I noticed throughout this thread most people don’t have pain from their bone Mets. I’m living in agony. I’ve been given pain medications, patches and I’ll start radiation soon to help the pain. Is it not common to have pain with bone Mets?
My Mets are extensive. The cancer is in more bones than not. My doctors are insisting the bones be biopsied. They aren’t confident the cancer in the bones is Mets. Has anyone or does anyone have breast cancer and bone cancer at the same time?
Thanks so much
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raisinangels,
I was not Stage 4 denova, but I was bone mets only for 2 years. Extensive-spine, hips, ribs, etc. I had enormous pain in my lumbar region right after dx.(hospital for a week and lots of pain Med) Rads took care of that.
Then I had rads to left hip and femur where there was awful pain. (I truly thought my leg was broken- again hospital about 5 days with dialude and fentynal briefly)
I had rads to the right hip, no pain, but significant uptake that needed rads to not break. I also had rads to T3 for moderate but non- stop pain. Probably have more rads in my near future for T1 & 4.
Radiation has always been very beneficial to me for pain. Makes you tired for a while, but does work.
Best wishes on getting the pain under control.
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Raisan, I was also dx'd st 4 de novo. I was in so much pain I was in a wheel chair. Rads to spine helped. It will get better.
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Probably a stupid question, but I genuinely don’t know. So you all have mets in your lymph nodes? I mean, I have bone mets but also in soooo many lymph nodes (cervical, supra and sub-clavicular, Axillary, sub-pectoral, etc), but no one ever seems to mention lymph node mets on here.
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Lynne, Thank you for letting us know about Aurora. Please tell her I'm thinking of her.
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Swess, I have lymph node mets too, along w everything else. They are treated systemically with my chemo. I'm on Gemzar infusions now.
I don’t think about em that much. The liver mets, brain mets and lytic lesion mets in the spine (lytic lesions eat away at the bone, sclerotic lesions grow out of the bone) are what concern me.
L
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I'll be thinking of Aurora. Thank you for sharing her message with us.
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About lymph nodes, that's an interesting question. They are never noted on my CT scans and when I had all of them removed during my surgery upon stage 4 dx, zero of twelve tested positive. I've always wondered about that - maybe they didn't test all of them (although I'm pretty sure the surgical report mentions 12 lymph node specimens). I've assumed that there's cancer in my lymph system and blood system to get me to this state. The same treatments for my bone mets should be working on the lymph nodes, so I don't worry about them
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The other one that has always perplexed me is how there can be a "normal" range for the CA 27.29 tests we have.
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Swess, I had positive left Axillary and supraclavicular nodes at diagnosis, and like Lita said systemic treatment handled those. Post chemo ultrasounds showed no signs of it in the supra and my Axillary nodes were removed with my lumpectomy surgery which only showed micromets in 3 of 13 at the time. I don't think of them much, bone met is stable and I've still got a shrinking but stubborn brain met left, which has been my focus these days
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I am so sorry to learn about Aurora going into hospice. What a sweet, encouraging woman. Thank you for letting us know, Lynne. Please do let her know, if you are able and circumstances permit, that we are holding her in the light and we wish her peace and comfort. So sad.
These heartbreaks are cumulative. We long-timers are all so thankful to still be here, but the blessing comes with the heaviness of honoring many, many silent avatars.
Raisan, I have had widespread, extensive bone mets since 2010. Like almost every bone. They can be incredibly, relentlessly painful but it all gets better when you get them stable. I've had years when I have needed a cane and could not function well without multiple doses of Vicoprofen per day and lidocaine patches for breakthrough pain, and then I've come upon stable years and even several NEAD years when I only had to take Advil maybe once a week and forgot I even owned a cane.
My point is-- and this is for all of you-- be encouraged that as you continue your treatment, chances are good it will bring relief. Things can get better. Plus, you will learn some strategies and tricks along the way. The right pillows. Trading in the lively ride for a floatier sedan (when I traded the SUV for a vehicle built on a car chassis, my pain levels took a major dive). Diet and supplements and balms that help you.
Chef, for most of my time on Stage IV treatment, I have been treated as bone mets-only. But I'm a rather weird patient-- I've had three major crises over the years that have been caused by mets flaring up in bizarre places-- my common bile duct, an ovary membrane, my pericardium. Like I said, weird patient. (These sneaky kinds of mets are almost always a lobular BC thing, though, and I see you only have ductal. Lobular grows differently and sometimes takes off on adventures in exotic places, whereas ductal is a more predictable traveler and prefers the usual tourist spots. So don't let my story freak you out!) We have put out these fires as they flared, with surgery and a bump up in treatment, and somehow I just keep on keeping on.
Point is, my onc always stays calm about these flares beyond my bones, and says "it's just more of the same, so we just keep on treating the cancer. Bones, wherever else-- we just keep at it."
Me, I just hand it to God and keep moving. :-D
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hi, don't know if anyone has experienced this feeling. I have damaged hip joint (well ruined, the surgeon says) including part of pelvis. I am having a strange sensation on top part of my leg, basically thigh to knee. A burning feeling, sometimes feels numb, sometimes like hundreds of pins are sticking into me. Due scan next week followed by Oncologist but just wondered if anyone else has had this. Thanks ladies
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I haven't had any lymph node involvement.
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I had one positive lymph node with ILC in 2005. But 3b because tumor was right up to the chest wall. That's 12 years to stage 4. That said thanks Lulubee I needed to think lobular now. It's a different species of nasty MrC
Most of my pain is also from arthritis in right hip that AIs seem to make flare. Only thoracic spine cause me pain right now. Bone mets in femur and hip has no pain. Don't no if it helps. Going for my next scan in Feb. will know more about new pain in arm etc.
in May I was planning my exit wasting time cleaning out stuff so my family wouldn't be stuck. Now I'm planning 3 no wait 4 trips in the next 6 months. Not that there aren't dark days. Pray that you all can find some peace and joy in the everyday things on those days. Maire
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Minnie, I have that all the time. Mets are pressing into the nerves. Talk to dr. It is treatable.
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Z- you must be relieved to have the Mayo week behind you. Your airport experience sounds just lovely-NOT! I had an "airport day" when the MBC was first discovered; it was hell. Sounds as though you are experiencing some weird pain- hope it's just the weird pain that comes with all this and nothing new.
chef47-you can be as disheveled as you need to be here, no worries, no judgement! I have liver mets as well as the bone. Thinking of you as you navigate this tricky maze of MBC.
Saddened to hear about Aurora. Blast MBC to the very depths of hell...
Swess- i have no experience with lymph node involvement. I agree that treatment will zap them along with the rest.
Best to all of you, may whatever you are facing turn out well. MJH
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