Bone Mets Thread
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Thank you, Sunshine. I’ve had MRI of all segments of the spine. I’ll definitely ask if there is any way we can maybe take an X-ray or something of my rib. I’m glad you haven’t had a fracture.
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HI everyone, I have a question. I was diagnosed with MBC March of 18. One lymph node is positive. I had my 6 month PET scan in September with nothing new showing up. I had my yearly bone scan done last week. It showed "subtle scintigraphic activity" my oncologist isn't to concerned because my PET was all clear. But of course with my situation, I have to have a CT scan tomorrow. Has anyone had this happen and it turned out to be nothing? I'm a mess and I don't know how to handle it. My mind just goes to the negative bad side
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I'm having a moment. I had a red mark on my right breast that wasn't going away. Scheduled and appt w/ my onc and mentioned that I had been having some hip pain. He suggested getting a cat scan just to be sure. Called me about an hr after my scan to let me know that I had Mets to my bones. It was a lot to take in but I just asked him what happens now. He said the first thing would be biopsy and ct pet scan and then we'll come up with a treatment plan. Tomorrow I go in for ct pet scan and what was originally supposed to be a biopsy appt but the what the doc doing the biopsy told me was that my t5 was practically non existent and my spine is basically being help up by the tumor. So the plan changed. Now there will be a biopsy and an ablation of the t5 and he will inject some sort of cement(that is my understanding)) to replace the missing bone. They kept asking me about my legs. I hadn't really noticed any leg issues. After we got off the phone I started to realize how much of my body is in pain. I have a high pain tolerance and had just assumed that these aches and pains were just part of getting older and gaining so much weight over these last five years. Doc told me was that I'm am at extreme risk for fracture so they're bringing me in tomorrow. It's a lot to take in. I am a logical person. Information soothes me but it's just blowing my mind that this whole time I was blaming myself and my weight and was sure that I just need to continue working on strengthening my core. My spine is balancing on a tumor. And now I feel so aware of all the other pains I just accepted as being due to some fault of my own(weight gain).
I'm glad the biopsy and scans are happening tomorrow. Little nervous about rebuilding the t5. One one hand I know this is all good because once we have this then we come up with the plan. But also I feel overwhelmed, I feel like it's going to be everywhere. I finally got my bachelors degree this spring and had so many plans. So many ambitions and its hard to envision what's coming. Telling other people is scary and draining and how will I navigate this at work. I was kicking butt at work. So hungry to climb that ladder and now I feel like I have to settled down and just do my best to hold on to my job. Death is there in the background but idk why I feel at peace with that.. I just want to live all the life that I have left fully. I worry about “being sick". I want to be out there living.
I keep saying I'll feel better after the plan is in place but only to myself do I admit maybe I'll be gone my next year. I worry about my child, my mother, my family and their fear and sadness. I feel like I absorbed a lot of this with the initial diagnosis. When I die it will likely be cancer...but I was just coming up on my 5 yr mark in February and had been counting down the days. I am a positive person and I am at peace with just enjoying whatever time I have. I think it's just those flashbacks to the heavy treatment days and how tough it was and how much of my life was taken over with this fight. I was going to buy a house next year. I wanted to start dating this year but COVID happened and now I think idk I should give all my love to my family. Idk how to open myself to someone with heavy bag I'm carrying. I've been single for 6 yrs now. Focused on other things but I told myself, when I graduate and start working I'm going find someone good for us. I'm going to find a good father for my son and loving partner for me
I'm not looking forward to other people's tears or explaining that this isn't going to end until it all ENDs. I just want a couple more years. My LB is 9. I don't want his heart to hurt. Sorry..had to vent..nervous about tomorrow and all the days after.
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Hi GreatUndertakings,
I hope you can get some real peace tonight, you are in the really hard part where everything is swirling around and news seems to just go from bad to worse. With many more ups and downs to come until the situation becomes clear. I just wanted to chime in that, though nothing is guaranteed, it is very possible you will go many more years than you ever had imagined with relative little or no health issues stemming from treatment. Maybe some PTSD from all the damn scans. I'm 5.5 years out from mets diagnosis, also had extra scans at the start to see if my femur would break and need a rod (dodged that bullet). The XGEVA they give you is very good at making the bones strong, you don't really see a lot of cancer patients in wheelchairs due to fractures anymore. Didn't tell anyone at work, good choice, it gave me a normal work-life and much needed break from cancerland.(Ended up retiring this year, so nobody at work ever knew.) Even to this day just a couple friends know, beyond my immediate family. And anyway I do not consider myself "terminal" until some doctor tells me to get my affairs in order. There is real promise and hope in some of the treatments in clinical trials. Enjoy your LB and every day as best you can, try to live mostly in the moment, and once you are stable with a plan, of course, it gets easier...
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Great, I'm so very sorry. I remember that when I read the word "metastatic" on my report, I kept reading the word, hoping I was reading it wrong.
I was reassured by both the Medical and Radiology Oncologists that this was not a death sentence, even if it feels like it. They both assured me that they have patients who have lived long after the Stage IV diagnosis. The Ortho Oncologist was also very helpful in explaining the risks of fractures, and how we could manage them.
If you look back at some of the posts here, you'll see some who have lived with mets for a long time. I know that doesn't really help you right now, especially when you're worried about your son (that's LB, right?) and your family. I just want to wish you comfort and courage in the coming days. I'm glad your medical team is working quickly on your treatment plan.
By the way, you may know this already, but if the RO talks about "Palliative Radiation", don't think, like I did, that "Palliative" is the same as "Hospice". I had Palliative Radiation to my hip and spine and it really helped with the pain. It was just hearing that word for the first time from the RO's nurse that really frightened me! Palliative just means that it's treating the symptoms, but it's not "terminal care".
Love and hugs,
Carol
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Great, you will find that you have so many friends here, friends you can't see or hug, but who are here, none the less, and sending those hugs and support. Some clearly have enormous scientific knowledge as well as experience, but all have experience, empathy, and concern for your situation. I am in complete agreement with Curious and Sunshine. You're in a very scary place right now, but time and resultant clarity will help you sort out a plan and treatment.
If you're not too overwhelmed to do so, you may want to fill in your treatment history (which appears below your signature on posts), as it makes it easier for others to understand your actual situation and be more specific in their own thoughts and ideas. I'm personally coming up on four years of treatment for MBC, and I'm doing well. I expected initially that I had very little time. It wasn't so.
Also, Sunshine's word of guidance on the word "palliative" is so very important....so many [of us] begin by thinking that palliative care is hospice/end of life care, and it is not. When you "come back up to the surface", you may want to look into that as another tool in your belt.
I also firmly agree with Curious' suggestion that you keep your diagnosis to yourself professionally. I have also done so personally for the most part, as I prefer not to be seen first as a patient but rather as myself. It has worked so far. You have to feel your way along on that.
Sending hugs to you and your little boy and all of your family-
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greatUndertakings, sorry to hear you go through this - I remember being diagnosed with bone mets was very hard on me. I was also thinking that this was the 'beginning of the end' but that was almost 7 years ago. The initial treatment plan, scans, biopsy etc were the hardest and it felt so unreal that this was happening. I had a great oncologist who saw me through this phase and told me "oh, you are not going anywhere". She gave me so much hope and support.
I totally understand what you are going through now. BUT we are all a living example that life does go on and once the treatment plan is in place, you CAN return to normal living. As others have already said it, THIS IS NOT A DEATH SENTENCE.
After my radiation to the spine, I was on Ibrance/Faslodex plus Xgeva. Very minimal side effects and I remained stable for a long time. My family and I traveled to Europe and many other places (pre-Covid times). No one at work knew about my diagnosis (except my manager, who was very supportive).
I hope everything goes well with your scans and biopsy. One advice to you - PLEASE DON'T ASK MR.GOOGLE ABOUT METASTASIS or check the SEER statistics. That information is very outdated. People have lived a long time with bone mets.
Please feel free to vent - that's what we are here for!
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greatUndertakings,
I also want to chime in with the others to provide a shoulder through this frightening time and to agree on the point that life is not over with an MBC diagnosis. Technically I recently passed the four year mark in October (when I stared experiencing an annoying cough, by November chest x-ray showed fluid in lung and by December CT revealed that my right lung was full of fluid) and have been going strong. With treatment the lung dried but, and while I have extensive bone mets, they are also well controlled with some radiation to manage pain/side effects. As you can see from my treatment history I've been through quite a few but until recently I continued to work full time. I chose to go down to four days a week recently to provide myself with space and more recovery time.
I would also agree on the comment regarding palliative care. That one takes some getting used to! The first time I heard someone use that term it was from the surgeon who put a PleurX catheter into my lung so that it could be drained. I recoiled at the comment thinking "Hey, I'm not done yet!!!"
I certainly respect the advice of others regarding letting people know about your diagnosis but would say it depends a lot on your situation. In my case I have been completely open with staff/colleagues as it was just easier given the nature of my work. For one thing I haven't had to hide my bald head when the situation arose.
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great - give yourself the gift of patience and understanding to get through this medical whirl and on to a treatment plan and then worry about tomorrow once you are on the other side. I had no idea what was happening or how terrible I really felt, my pelvis fractured, and I was admitted as they thought my spinal cord was impinged. Once I got radiation and on to the drugs and was able to start healing and processing the dark became a bit lighter and today I feel pretty good, mentally and physically.
I know the spine surgery can be concerning, but there are a few ladies on this board who had vertebrae removed and titanium cages inserted, and they re doing well. The cement will be a less invasive procedure but between that and the bone injections, will start helping things to hold together.
No one knows my actual diagnosis - I had to tell close family and work manager but I never told them which stage. I've since switched roles at work and I don't feel the need to tell anyone as you would never, ever guess looking at me and I don't want to be treated differently, even if people don't mean it that way. Choose who you share the news with carefully and know that a lot of people really don't understand what Stage IV means (I didn't!) or how to respond either.
We are all here for you if you need help and advice or a place to talk as you get situated on this wild life tangent - always feel free to ask questions!
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greatUndertakings...there is nothing more I can add to what all the wonderful ladies here already have said. I know this is a horrible time for you but it will eventually get easier. Hang in there and we are all here for you.
Palliative care, I freaked when I first heard that term. So you got great advice from Sunshine about that.
Take care and again, we're all here for you. (((hugs)))
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cbuberger, I wouldn’t worry if it was fine with my MO. I am not very familiar with pet scan, and I do have many unanswered questions about my pet report. Please do check in and let us know about your scan.
greatUndertakings, ladies told you everything, only thing I can add is to study about your diagnosis and treatment plan on this forum, breast cancer.org provides good sources of information, the more you know better you can handle situations around. In the meantime try to not lift up heavy loads, take it slow as much as you can.
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Hi, Greatundertakings, I don't know that I've published on this thread before as I've been hanging out with the Ibrance folks for years. When I saw your post I was concerned but then I saw the survivors who had responded and their wise words. You're in good hands!
Longtime survivors have always encouraged me so I hope you'll read all those stories you can find. I have friends who are over 20 years out with MBC. Some still get treatment and others have had many years without evidence of disease. We laugh about how many decades you must live before they'll put on paper that you're cured!
I'm almost 27 years out from BC and first had metastatic disease in 2012. I had some years at NED, others progression-free and some with significant regression. There's every reason you'll be around to see your son grow up, marry and have his own children! I'm now hoping to do that with a granddaughter!
I'll be praying for you and for your boy. Don't forget all the researchers who are working on the big cures to change everything!
Love from PatGMc
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Hi Pat,
Great to see you pop into the bones thread. You continue to have a great run on Ibrance. Hoorah! Here’s hoping you have many more.
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Hey, Pat...sending hugs to you! And always to Sadie!
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Hey Lynn,
Hugs back at you! Hope all is well with you.
Things are starting to return to normal for me after a few challenges with my skull mets. The radiation treatment has been very effective but was not without its challenges. The worst part was that it did a number on my salivary glands (I think that was the problem) which caused dry mouth and seriously impacted my sense of taste. It took over a month for things to return to normal - at the beginning all food tasted vile and the texture seemed so off that it was hard to eat. Meat was like eating sawdust... yuch! But I am happy to report that I am enjoying food again and even a glass of wine. And on the positive side, I lost a bit of the weight around my middle that Faslodex put on me.
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hi great undertakings,
just want to reassure you, i was also diagnosed with spine mets my lumbar vertebrae and sacrum (L5 and S1) were "overflowing" with cancer anyway i had a kyphoplasty (putting cement in to strengthen the vertebrae) and then i had rods and screws put to keep the vertebrae from collapsing. i was petrified when i was diagnosed april 2019. I was having so much pain didnt even know where to turn. anyway to make a long story short, i ended up having 2 surgeries on my back (you can PM me and i'll explain everything,) following that i had SBRT. anyway now being treated with immunotherapy as the first treatment didnt work - ibrance and letrazole. it was a long journey but my pet scan now is NEAD. when first diagnosed, i was sure i was going to die within a year. but there are so many treatments available now i'm sure they will find something that will help. Feel Positive!!!
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ts542001, first congratulations on your NEAD, I hope you continue to be NEAD. thanks for sharing your story. I do have some questions for you, I hope you don’t mind if I ask questions here, thought if you could answer them here more people may get benefit. How do you understand ibrance+letrozole didn’t work for you, and can you explain a little further about immunotherapy you are taking.
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hi snow drop,in general i am a private person, but after thinking about it you are right, other people can benefit from my experience
i have tried to update my history that shows up below my submission but i'm not all that computer savvy, the one thing i can say is when i clicked on immunotherapy as a treatment only one medication was on the click down list and i couldnt figure out how to add keytruda. and as long as i am talking about the treatment area, i couldnt figure out how to add that i had SBRT to the radiation area, i'm sure there are people that would want to know more about that a well.
i dont know why i didnt respond to letrazole and ibrance, probably for the same reason that i'm on keytruda, which is that my tumor had a high mutational burden and also had microsatellite insufficiency and mismatch repair (MSI and MMR). ihave to say was very disappointed that the letrazole/ibrance didnt work - i have seen such good things on this site, people with responses for years, hopefully the keytruda will do that too. i am currently taking keytruda every 6 weeks. in terms of side effects on keytruda - minimal amount of tiredness the first few days after treatment, nausea which is intermittent, sometimes i can go for a week with no nausea and sometime i have nausea everyday everyday for a week. i cant be sure its the keytruda, but there is no other reason to be having it. and finally i developed arthritis which is not pleasant, i am currently being treated and am a lot better, i found a rheumatologist who specializes in arthritis in people taking keytruda (and similar medications)
i have been on keytruda since october 2019, my first scan after 4 treatments with keytruda was NEAD and has continued since then, my next scan is dec. 28, i'm of course anxious but hopeful that i will continue to be NEAD
i hope i answered all your questions, if not feel free to ask again.
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ts542001, thank you so much for sharing your experience in this board, people may get benefit and appreciate you. Best wishes for your next scan. December 28, to continue being NEAD. (((hugsss))).
I learned from ladies in this thread that calcium and vitamin D are recommended for bone Mets.
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ts542001, how did you find out that you are eligible for Keytruda? I've recently failed AIs, Faslodex, Ibrance, and now Xeloda maybe, so I'm getting worried. I started Xgeva recently. I see my MO soon and I'd like to go a new direction with my drugs because things just aren't working.
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Cross posting... Has anyone had a procedure to C7? If so, which procedure...and how was it, side effects etc? Why did you have it were you have severe issues from mets in C7 or did you do it for a preventative?
Also has anyone had Cryoblation there or on any bone mets? If so, where?
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buttonsmachine - regarding keytruda, i failed letrazole and ibrance, after 4 months tumor was growing, tumor markers increasing. PET scan showed increased cancer. ,when i had my original breast biopsy, at memorial sloan kettering, they did impact testing, which looks at the various genetic markers the tumor had, and my tumor had high mutational burden (which is now a criteria for keytruda, but i dont think was then), but also had MMR - mismatch repair and MSI - microsatellite instability. which are both criteria for using keytruda.. and i think now if you are triple negative, keytruda is approved for that too
i hope this answers your question, if not feel free to ask more.
\good luck.
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ts542001. wow you sound like me...failed Ibrance/let/faslodex after 4 months...I was also originally stage 0... and also am a Grade 3. What are you on now? I failed Xeloda (after Ibrance/let/faslodex) then failed Doxil...now on Eribulin and it shrunk everything at 3 month scan (like Ibrance) but now..month 4 we think it stopped working due to a skin condition I have that only seems to go away when a treatment works and comes back when they stop working (which is now happening.). I wanted Abraxane + tecentriq or Keytruda next...but since I am HER2- ER+ PR- my MO says it might be hard to get approved, but you are saying if TMB is high...this was mine at last biopsy April 2019 "Tumor Mutational Burden TMB-Intermediate (6 Muts/Mb)". Microsatellite status MS-Stable. --- but again that was in April 2019.... however I failed all those treatments... I do have 10% PDL1...so that is what we are gonna use to base trying to get approved for Keytruda or Tecentriq.... Any thoughts?
I go in for Y90 on my liver mets on Tuesday...they are getting 2 out of the 3 tumors... they will get the 3rd one in Feb and also try for a biopsy then.
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Nicole,
You did not fail these treatments, they failed YOU! ❤️
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Hi Nicole,
WRT the skin issue, I wanted you to know that you are not alone in having weird skin issues when the cancer is misbehaving. When I was first diagnosed as stage IV I had a lesion appear above my left breast (not my BC breast) which simply would not heal. I flagged it for my MO who confirmed it could be mets. When I started Ibrance it disappeared. WTH?
When I had to stop Ibrance due to anemia I started having weird red welts appear on my abdomen. They would appear and disappear with no apparent reason. Turns out Arimidex was failing and the cancer was sneaking along the membranes in my gut (reported on the capsule of my liver). Started Faslodex and they disappeared.
More recently, about a year ago, I noticed odd blotchiness to the skin under my left breast. No lesions but very obvious. Hmmmm.... did that mean Faslodex was starting to fail? Layered on Verzenio and the blotches disappeared.
I didn’t want to insert myself into the liver thread but thought I would let you know that I get it. Cancer is weird....
As to your question about C7, I have not had that radiated but recently had C1&2 zapped. Had to have this done to deal with severe headaches and pain. My only advice is not to do this lightly. The treatments were a bit rough and the last side effects have been a bit challenging to deal with. I’m coming out the other side now but keep in mind that the neck has a lot of very significant and sensitive nerves, etc. The potential for unintended consequences is high.
Hugs.
Pat
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Pat thanks for you thoughts about the skin issue
Yes to what you mention about not taking radiating the C7 lightly..I agree and I believe you and I talked about this several months ago... Thats why I am wondering if cryoblation will be less side effects and radiation...I am giving my IR the MRI from Oct on Tuesday when she does my Y90 ...so I will see what she says and let you know
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Warm thoughts to all of you. Anyone here who's done well after lung mets?] I just saw my MO to follow up last weeks CT scan and lab. I've been on Xeloda for a couple months along with radiation to slow down growing breast tumor. Its been 4 years MBC IN Jan. Originally my mets were lung pleura. Ibrance/Letrozoke worked for 2 1/2 years and that cleared up. When they crept up again Faslodex was tried but didn't work. Now my tumor markers have gone from 54.4 to 65.9. She said that could be from radiation effect on the breast tumor
My big worry us that there are some new smaller nodules in my right lung and a trace amount of right plueral effusion. My previously enlarged lymph nodes have decreased however. I was originally diagnosed with lung mets in 2017 and went to "No evidence of metastatic disease" on one of my reports. My TMs hung around in the normal range for quite awhile so this is so discouraging. When you google MBC to the lungs, it sounds so grim, like average survival is under two years. Anybody out there who's done well with lung mets? My MO first wants to get the breast tumor to slow down. She tried to send me to surgeons for it, but they didn't seem to think there was a point in surgery with MBC. Very discouraging. Has anyone found that something worked after being on Ibrance/Letrozole, faslodex and Xeloda. I also had three months of Taxol in 2017. At least I feel well. I sure don't feel like I'm at the end of the line.
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Sorry, I didn't realize I was on the bone mets thread with my post above. I have lung mets.
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ts542001, thank you so much for that info - it does give me something to go on and investigate. I do not know if I have been tested for the MSI-H or dMMR biomarkers, but I will definitely ask my MO about that at my next visit. Until your post I didn't realize anyone besides TNBC patients could use Keytruda.
It's been a wild ride for me these past six months, and not in a good way. Six months ago I had one lone bone met and now I have innumerable bone mets throughout my spine and skull. The worst part is that they are inside my skull and pressing on my brain and soft tissues, which is causing terrible headaches and is even affecting my vision. My actual brain looks okay so far, but everything right inside my skull is getting scary. There are mutiple tumors, the biggest of which is 4cm I think. Anyway, this all happened shortly after Zoladex/Faslodex failed. So we added Ibrance which seems to have done nothing, and now Xeloda is also doing nothing.
I really feel that I need a drug that works soon. At this rate I'm afraid of where I will be three to six months from now. Anyway, I really appreciate you sharing your experience. Also if anyone else has any advice I'd appreciate that too. :-)
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Buttonsmachine, I hear you. I have extensive bone Mets too, on my skull, and all over the spine. I also have extensive liver Mets. I have been on different treatments this year and changing regimens every 3-4 months. Recently, a biopsy revealed that my cancer has mutated to TNBC from being hormone positive for 10+ years. So started Doxil this month.
So what I am trying to say is - don’t worry too much about bone Mets. You have quite a few options of IV chemo. For me, Taxanes kept my Mets stable for 6-8 months and then I was on CMF for 4 months. Both were not too hard to tolerate, and I was able to keep working.
Has your MO tested your biopsy sample for PIK3 mutation? I was positive for this and was on Piqray for a few months. If you have not already done so, please have a chat with your MO about bio markers and what options you have for targeted therapies.
I also got some local treatments for bigger/painful bone lesions.
I was diagnosed with bone Mets in early 2013, and I am still here in Dec2020! Yes, I felt the same way as you did when I got my biopsy report in 2013.
Enjoy your Christmas Day with your family. Please feel free to send me aPM if you have any questions.
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