Bone Mets Thread
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Thank you so much weninwi. That is very encouraging. My appointment is on the 31st.
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Mommacj, I do not have enough knowledge yet to answer your questions since I'm new to the bone mets world, but I did want to acknowledge your post and say that I'm sorry you're going through this tough battle. I've been thinking of you since reading your post and truly hope and pray that all goes well for you, and that better news is coming soon. Hugs to you!
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mommacj - Hi - I am real sorry to hear that you are going through this and wish you all the best. In my situation, I just don't have the kind of information you are looking for, but I wish I did. Glad to see that WeninWI could help you re a liver biopsy info.
I was initially struck by the closeness of your Covid to your stage 4 diagnosis, but then I noticed you got Covid after your September diagnosis. I had Covid in April of 22, and never felt the same afterward. Last November I started having a bit more chest and back pain than usual, and then in January they did a CT and MRI and told me that my cancer had spread to my ribs, spine, and sternum. They did another scan and added very small possible spots on my liver and lung. They are planning to biopsy one of the spots on my spine, and like you re the liver, I have been asking for first hand experiences. While I do not believe that Covid or the vaccines in any way cause Covid (all the "conspiracy theory" stuff), I have wondered if Covid could in some way set the stage for those dormant cancer cells that so many of us have, to awaken and activate. This wondering is due to my experience last year with Covid, then what I thought were "long Covid" symptoms were followed by the move to stage 4. It looks like your Covid came after your move to stage 4, however, so in that regard our situations aren't the same. We are both, however, new to this stage 4 business, the bone mets, and all the biopsy and treatment issues. (I did see where some researchers are looking into my very question, i.e. could Covid, while not directly causing cancer, set up the "tumor microenvironment" in such a way that dormant cells can become activated?)
I also want to thank you for bringing up the issue of the mixed results you got on your PET scan. I had wondered about that sort of thing happening, but so far had not seen where anyone has discussed that. From what I had read here so far, it looked like people either stabilized for awhile with treatment (with all their mets) or they progressed (with all their mets). It's interesting to see that some can improve while new ones appear. More to think and learn about. I got the impression from my meeting with my oncologist last week, that it doesn't really matter how many mets spots you have - they are all mets and you are now considered incurable if you've reached this stage 4 business. She didn't seem to think it mattered too much what kind or where the mets were. I don't always have great faith in her, so am thinking of seeking a 2nd and maybe even 3rd opinions, but your post added some food for thought to all of this for me.
Again, I am really sorry you are going through all this and I hope you can get some real good answers to your questions from other members here. I will be following along, as I have some similar, but not exact, issues and questions. Wishing you much, much luck.
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mommacj - I have had several spots in my spine radiated with no major issues. Most of my mets are in my T spine, L spine and sacral areas. I've had radiated T7, L2 and S1. The process didn't hurt and I had no major effects aside from fatigue. There are a bunch of us here with spinal mets that can help talk you through some of these treatments. I'm sorry to hear about your scans, I'm sure you are tired of hearing that. I hope that you find some good support here. It's a great group of people.
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Threetree- these covid questions are interesting- it does lower your immunity to have covid- I don't think you will get much support for your covid theory. I don't think you will get any answers re this until some data is available.
I got some severe virus in February 2020 in LA at a bday party, my daughter and her partner also got very sick. Covid was not really a thing yet. I thought that I had the flu- but, it wasn't like previous severe flu I had- no aches, had a cough, very tired. my daughter got better, I didn't. finally couldn't get out of bed hardly and went to the ER- had a hemoglobin of 6 and low platelets and lots of other abnormalities. my flu test was negative (I had been vaccinated against flu) anyway- I ended up with hemolytic anemic called Microangioplastic hemolytic anemia (MAPA) it is non-immune - they ruled out a several things and then treated me with blood transfusions every 4 days for 2 months. I had just switched treatments also away from Afinitor due to progression to Tamoxifen a few weeks before- They started Xeloda and it saved me. I thought maybe I had covid- but, there was no test- and people did not want to speculate. they had poor quality antibody tests for covid several months later- they were negative. Lots of times people don't want to speculate on theories it seems.
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threetree, I absolutely love that you are very intentional about setting aside Sundays as a time of relaxing and recharging. I agree that simply taking a walk in a different direction than you normally go is a good way to change things up. We sometimes hear of the kind of person who receives devastating life-changing news, so they quit their job, buy a whole new wardrobe, sell their house, buy a big motor home or a motorcycle and travel to far parts of the earth. Good for them, but life does not have to be so dramatic to be enjoyed. We don’t have to live large to find contentment in our every day lives.
I’m the type who likes being around people about half the time and the other half I need alone time. Sometimes things come along that throw my equilibrium off balance and I get in a down in the dumps funk. I’ve learned to let myself feel the feelings, and then I will nudge myself to make an effort to get out of the house and go somewhere. For me, nudge is a gentle word that means it’s okay if I’m not all peppy about getting moving, but that I should at least try. I’m pretty much always glad I did. Last year for various reasons, I had to nudge myself a lot. Some things turn out to be duds, and that’s okay. I can usually laugh about that. Sometimes things turn out even nicer than I imagine, tho, and who doesn’t like that?
momacj, radiation to a few problem areas is something I think a lot of us have done. I had it last year to my thigh. I take the oral chemo Xeloda and my scans came back good except for that area, so I had it radiated and continued taking Xeloda. I recently had scans and all is still stable. So it can be an effective treatment. Let us know how things work out for you with that. Btw, you could also ask your question on the liver thread; they are wonderfully helpful over there, too.
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Hi all, I wanted to update you just because a few of us were discussing anxiety meds to help with the stress that we all are going through. I did meet with the psych NP yesterday via zoom and after a 90 minute conversation, she prescribed a few things. For immediate relief in stressful situations, the psych NP prescribed Ativan 1mg and also Hydroxyzine 10 mg. The Ativan is more for the higher stress days, and the Hydroxyzine is for lower stress days. I just picked them up from the pharmacy tonight so I have not tried either. She said it might be best to try them on a regular day that I am home, just to see how I am after taking them. She also said both are low doses. Anyway, I do not know how often I will need either, but I feel like it is something good for me to have, just in case, if that makes any sense!
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nkb - I agree that I won't get much support for my theory until data comes in. Interesting, I went to a walk-in clinic today and while I was speaking with the physician's assistant there, we both started noting things about Covid, and she too said that she was wondering the same thing I am, i.e. whether Covid might set you up for a recurrence. Not because Covid causes cancer, but because it alters the internal environment and might help those dormant cells to "wake up". We both agreed as you said, however, that they are just learning about all these after effects of Covid and we will all just have to wait for definitive evidence. Wow, that illness you had in 2020 sure sounds like it could have been an early case of Covid to me. If I remember, California was an early "hot spot" for it. You'll probably never know.
Divine - I really need my alone time too. They say it's an introverted thing. Introverts re-charge with alone time, and extraverts re-charge by being out with other people. I really enjoy other people and being with them, but when I need to seriously "fall back and re-group", I need to be alone. With this stage 4 diagnosis and all the anxiety that comes with it though, I do find that my stress levels go down when I'm with other people and can just "unload".
Tld2017 - I'll be curious to see how your anti anxiety med experience goes. The ER doctor gave me some Ativan, but I've only ever taken one. Also mine are only .5 mg, whereas yours are 1.0. I'm not sure if the one I took actually did anything for me or not. In hindsight, I think my problem might have been more from joint and muscle aches from Letrozole, rather than mental anxiety. I continued to feel pretty weird, but it was mostly physical.
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Tld2017- I took hydroxyzine every night for hives I had- really helped me sleep. with Ativan, I take .5 mostly at night. you could try breaking it in half first. I have rarely taken it for daytime anxiety but, when I did it was really helpful. happy you have them on hand if you need them.
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Thank you everyone for the kind words and thank you for sharing your radiation experiences. While I certainly wish none of us had to walk this road I am very grateful for your knowledge. I am glad to know that radiation has been effective on some hot spots because if we can get the two new spots taken care of and the others keep responding maybe I can get some time out of Ibrance and faslodex? That’s my prayer anyway. I am grateful to have found this group. I did cross post on the liver thread and got some good feedback on the liver biopsy they are doing on the 31st. Most people seem to do well with it. My doctor prescribed me .25 alprozolam which is generic for Xanax. I use occasionally but mainly for scans or before surgery. But I have it if I need it.
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I forgot to mention when I was talking about the psych NP visit, that she suggested I take Lexapro daily, but I am not sure about that. I don't have depression, just anxiety some days when the cancer stuff gets overwhelming or when my daughter, who has a chronic illness, is doing very poorly (she has almost died multiple times since her illness began 10 years ago, as recently as just this past December, the ICU doctors were not sure she would live through the night at one point). So I am going to do some research about Lexapro which is mostly used for depresson from what I understand but can be used for generalized anxiety disorder. I just took a .25 mg Xanax when I flew last week (I hate to fly!) and it really did not work that well. Since this particular psych NP prefers to give Ativan over Xanax, she said that 1 mg of Ativan equates to .5 mg of Xanax, and since the .25 mg of Xanax did not work well, she would be bumping me up to .5 of Xanax = 1 mg of Ativan. I guess I will find out if it works soon enough! If anyone here has any experence with Lexapro, please let me know! Thanks, Ladies!
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Hello to all. My reason for popping in this morning is to share the following message from the Mods that has been posted on the forum. I want to make sure as many people see it as possible. Please spread the word.
Important update:
We're very close to the launch of our new community forums! The conversations that have been shared here over the past 20 years will be waiting for you in the new forums.
During this migration, which will begin on March 12 and end approximately on March 23, all newly created threads and posts will need to be moved by the mods to the new forum through a manual copy and paste process.
Unfortunately, we can't migrate private messages you send and the threads you favorite during the migration period. Please copy and paste any private messages you'd like to save for yourself in a separate document, and write down any favorites you want to bookmark in the new forums.
We thank you for continuing to be patient with us through this process. We're doing our best to make sure all conversations continue and pick back up where you left off on the new forums very soon!
--The Breastcancer.org Community Moderators
March 9, 2023
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Devine, Thanks for posting. Hopefully it will go better than last time.
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Divinemrsm - Thanks for cross posting the information about the new site. I went ahead and saved my favorites and went through my private messages to see which ones needed saved. Going through the private messages was a little emotional. I still have some old PMs from members who are no longer with us and it makes me so sad.
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cowgal- I too have PMs from women no longer with us. I can’t seem to work up the courage to read through them one last time. I’m in tears just thinking about it. It’s times like these that this disease really hits home with me.
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Hi all, Please note:
TO BE CLEAR:The only PMs you should consider saving and the only Favorites you make that you should track are ONLY the PMs you send and receive during the migration period and the threads you favorite during the migration period. The migration period is Sunday 3/12-Wed 3/23.PMs sent and received prior to 3/12 and threads you Favorited prior to 3/12 will be waiting for you in the new Community.
We have updated the announcement to clarify this message. Apologies it was not clear.0 -
Mommacj - I had a similar situation where my local and axilla tumors grew on Ibrance but it was otherwise holding things stable. They went for primary surgery in an attempt to keep me on Ibrance, but then the next scan showed a single spine met decided to grow too. They radiated that, though it was a two strikes, switch treatment situation. I was ok with that, I didn't want to end up with a cancer blowup if something wasn't working anyway. I was switched to Lynparza - last year about this time.
Its good they are thinking of ways to keep you on the first line and not just knee jerk reaction!
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Sorry Mods. You probably had it worded correctly from the start and I read it and went and did some other things and came back to the board and forget how it was going to work.
rk2020 - As sad as it is to read old PMs to think of people we have lost, I am glad to remember them again as well.
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Hello,
Just popping here to ask if anyone who has sternum mets has had SABR/SBRT before. I just started mine today (1 of 5). Just wondering how it worked out for you.
I'm a bit worried about the negative outcomes...
Thanks!
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mkirkwood - I was diagnosed with mets to sternum, along with ribs and spine, in January, but so far I have not been told what kind of treatment I will be getting. I am waiting to schedule a biopsy to determine that these mets are indeed breast cancer spread before a treatment plan is developed. The radiology department at my center is apparently very backed up due to staff shortages, Covid fallout, etc., so I haven't even been able to get the biopsy scheduled.
I too am interested in what sort of treatment people get for sternum mets, and will be watching to see what others here have to say for you. So far my dr seem to have only suggested chemo and AI of some kind. I would imagine others will come along soon with some help.
Very sorry you are having to go through this, and I wish you lots of luck.
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Thanks for your reply threetree. I'm sorry that you have to wait for your treatment plan. I hope that you’re not in pain and hear soon what your next steps will be
I’ve been lucky not to have pain with the Mets so far and once radiated have had some good years NED in between.
This is my 4th round of radiation - breast 2009, hip 2013, sternum 2019 and now sternum again in 2023.
This "repeat" met showed up after my PET scan in September.
The previous times have been traditional radiation but after some panel discussion in January SABR was suggested.
As for drugs after chemo I started out with Tamoxifen 2010 like most do, then moved to Arimidex 2013 (brand name because of generic side effects), then added Faslodex injections every 4 weeks in 2019. There is no plan right now to change my medication.
I’ll keep you posted on how this new radiationtreatment goes.
Gentle hugs to all!0 -
MKirkwood - Thanks for the nice comment. I am super frustrated over not being able to get the biopsy done sooner, and now I'm having terrible pain in my ribs for the last few days. I'm going to find some kind of doctor today who can give me some kind of help with that. It fits to a T the description of strained intercostal muscles, but, they've also told me I have multiple rib fractures from the mets. An urgent care doctor agreed with me last Wednesday that this was probably bad muscle strain, but it's only getting worse and the pain is to the point it makes me cry and I can barely move. Shouldn't really be typing, but can't seem to stay away from this board. I've also been told this is all from poor posture and computer strain, hunching over laptop, etc. I'm afraid if they dig further, they're going to tell me it's from cancer. (Thanks for listening, I just work up in really bad pain this morning.)
Wow, you seem to have really been chugging along fairly well with all of this for some time. Good for you!
I don't want to speak for another member, and I'm not 100% sure of this, but re SBRT you might want to look for posts by Serenitystat. Again, not to speak for her, but I think she recently had that treatment and could speak to it. She is working now though and doesn't post on here, as she has less time, but you might do a search for her posts and see what she has to say. Also, you could just do a general search for SBRT.
Hope that helps
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Sorry I originally posted this in the "Long Haulers" with bone mets thread, but meant to post here:
I have a question for those of you with spine and rib mets re pain. I'm in really bad pain as I type this, so I might ramble, misspell, etc, but here goes: I was told that I have a couple of spots on my spine (T2 and T8) and then lytic lesions in my ribs with multiple rib fractures. I was told that in January and at that time and no particular pain that I could relate to the mets. I saw the oncologist on March 1 and she asked if I was having any pain and I said, no. She said, "Your real lucky". She also said that some have pain and some don't.
The Sunday before yesterday, I went to get a package out of parcel lockers that we have here at my apartment place. The delivery people put the packages in the lockers and then you are sent a code electronically to use to open the locker and retrieve the package. I discovered that my package had been placed in the far back space of the highest locker and it was too much for me to reach. If I closed the locker to get help, I risked the code saying that the package had already been picked up/deactivated, so I went ahead and tried with all my might to reach up and try to move the package forward so I could grab it at the front of the locker, where I could reach. I probably spen 15-20 minutes just constantly reaching up to that high space to try and get the box to move. I even swung at it with my purse a few times thinking that the weight of that might cause the package to budge, but it didn't. Finally, I saw that others had left flattened cardboard in the trash in that room so I grabbed a piece and fashioned some sort of "stick" type took out of one of the flattened boxes. I tried using that too several times to get the package to dislodge from far back of the top locker. I tried and tried and tried and tried and finally at one point, the cardboard "stick" moved the box forward enough that I could grab onto it. In hindsight I realize that was real stupid of me, but that's what I did. At the time I felt no pain or thought of any reason why I should keep trying to get that box out.
Fast forward to last Wednesday, and I woke up with horrible pain around my right rib cage area and somewhat into my back. I could barley move or get out of bed. Started thinking it was a pulled muscle from some previous days work I did that involved a lot twisting around back and forth on a table doing paperwork, computer work, phone work, etc. Thought I would just wait it out and take some Tylenol. The Tyleonol helped a tiny bit, and so I thought I'd go out for my walk, that is usually about 45 minutes. Well in no time I realized that every step I took caused this pain to flare up. It got me so nervous and anxious that I had to come home after about only 15minutes. To boot I was exhausted and out of breath, and at times found myself developing a raspy voice (usually when I would experience the pain flares.). I'm a real Dr. Googler, whether I should be or not, and everything I read and had experienced fit with perfectly with severely strained intercostal muscles. I did suspect the rib and spine mets too, but from everything I read it was far more likely to be severe intercostal muscles strain. I decided to go to urgent care that afternoon and they determined that it was "musculoskeletal" and told me to just go home, take it easy, us OTC pain reliever, heating pad, etc. The next day I though I had some improvement, but it didn't last long. By Saturday and Sunday I was in excrutiating pain and had the pain had shifted somewhat to the left side as well as the right. The right seemed slightly better. The pain was so bad I was crying and I switched from Tylenol to 2 Advil 3 times day - something I would normally never, ever do. Again, everything I read said intercostal muscle strain. It said it could be severe and debilitating pain that takes a few days to develop and then which can get worse before it gets better. That encouraged me to go with the sore muscle and not mets idea again. Yesterday morning, it was even worse, so a friend offered to drive me to the ER or the urgent care, and I went back to the urgent care. This time they gave me a stronger NSAID and a muscle relaxer, that I have barely started, so can't comment on, and I am waiting for it to kick in as I write this.
I noticed that both times the practitioners I saw called this either "musculoskeletal" or "back pain, unspecified". They never indicated that it was muscle only and likely not mets. The person I saw yesterday even made mention in her notes that while it appears to be muscle at this time, she cannot say that it isn't from one of the spots on my spine.
My question to those of you with spinal and rib mets, rib fractures, etc. is: Do you have pain? If so how much, how often, and what is it like? What do you take or do for it? Is this something that could become chronic and for "the rest of my life", i.e. could I have to live with this severe debilitating pain for whatever time I have left? I am hoping with all my heart of course, that this is just badly pulled muscles from that Sunday package retrieval incident, but I am getting more and more scared that it could be mets. If it's muscles, they say they can take weeks and even months to heal, so I have lots of time to wait and worry about just what this might be.
Thanks more than you'll ever know to any and all of you who have taken the time to read through all of this. I'm just a very painful mess this morning and looking for answers. Thank you all so much!
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I have strained those muscles before and it was really painful. I suggest calling your doc and describing how it's affecting your life today. I think a few stronger pain meds would be appropriate. You need to be able to function during the day. My vote is for the package causing the problem, I have a rib met at the spine and have had numerous rib fractures which caused no pain.
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Wren44 - Thanks so very much for your feedback. It is very helpful and reassuring. I've had no real pain whatsoever from the spine and rib issues until this possibility. Good to know that you've had no pain from your similar problems. I was looking on the site "Reddit" today (not a usual habit for me) just to see what people had to say about strained intercostal muscles, and wow, just like the other stuff I've read on google, the people who posted there all described very similar experiences to mine. They also talked about the horrible pain and how it can be like a 10 out of 10 sort of thing a good deal of the time. The one thing that seemed to be a theme in all those posts was how you basically have to stop doing everything and just rest for days and weeks, otherwise the pain and all just re-activates as soon as you do any real activity, and that's what I'm experiencing. I'm going to give these new pain meds that I just started taking today a few more days to see how they work and if it's not good, I will call the doctor for further steps. I'm still just hoping with all I can that this I just did something stupid, and that this is "only" pulled muscles, even if severely pulled and extremely painful.
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Threetree - the situation you describe trying to get that package sounds like a set up for intercostal strain. I have not had that but I do have one of my mets at T8 with a resulting compression fracture. Most of the time it doesn't hurt at all but if I'm working in the yard too much or sleep wrong it can hurt quite a bit and also cause referred pain to my ribcage. I'm not sure there's much you can do for ribs except rest them as best you can. You could also try ice or heat, whichever feels better in addition to meds. I have a heating pad that I sit against when my back and ribs get painful and that helps me.
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Emac877 - Very nice of you to respond; thanks very much. Interesting to hear that your T8 spot does cause problems. When you do things that aggravate that and get pain, how long does it last? How severe is it? Does anything in addition to the heating pad help with the pain? I tried the heating pad, but to no avail. Lying down on it was fine, but when I go to get up, the pains on the sides of my ribcage approach the unbearable mark. Same when I get up in the morning. Once I'm lying down it's not too bad and once I fall asleep, I stay asleep. I'm so glad it at least doesn't wake me up, but when I do wake up and make that attempt to get out of bed, it can just be killer! It's the need to bend and move that does it. Once I'm up and around, it can ease up a bit from time to time. I thought the heating pad would be great, and I normally really like and appreciate using one, but not this time.
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Threetree- try bracing your ribs when you change position if you can. you may discover a way to move that is not as harsh- rib strains can be very painful. (don't wear an ace wrap brace - it constricts your breathing). I have had to discover unique ways to get out of bed at times due to injury. I wonder if ice would calm the inflammation or act as a pain reliever briefly?
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Nkb - Good ideas about bracing ribs when changing position, and using ice - thanks very much. I've read about bracing, using pillows primarily, but I hadn't thought to try it when I move. When it's time to get out of bed in the morning, I usually just tell myself, "This is gonna hurt like heck - just do it!" and sit up and swing my legs over the bed. Then when I stand up, I can't always go immediately upright, because I stay "bent" for awhile and that getting "unbent" can be extremely painful. I haven't tried ice yet; I'm never quite sure how to do it. Sit up, lay down? Hold it for awhile (and not be able to do anything else during that time)? One side at a time, both sides together? I've never been able to find a real "user friendly" way to put ice on injuries. They say to only do it for about 10 minutes at a time too; but how many times a day, etc.? I think it probably would help a little bit periodically.
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Threetree- so much of medicine in an "art". they once did a questionnaire "what does take one pill three times per day mean?" they got too many interpretations!
When I use ice, I first put a layer between the skin and ice and as the skin cools, I remove it and go directly on my skin. there are all sorts of fancy ways to hold the ice there- not sure it is any better than holding it against the ribs with your hand. Both at once sounds difficult- do the best you can and see if it helps.
Getting out of bed, I might try bending knees first and tensing up my abdominal muscles and see if they can assist your arms into upright and leave your intercostals out of the heavy lifting, then rest sitting on side of bed and then get up holding onto something. these injuries are a good anatomy lesson on what muscles are involved in what we do.
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