Bone Mets Thread
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I forgot to say something. The ESMO guidelines she quoted from says Xgeva is monthly dosing. That Zometa can be switched to every 3 months, but Xgeva is monthly. So going to every 3 month Xgeva that some on here are doing ,, or even every 6 months like me and a few others on here,, is not recommended by ESMO. But my MO said she feels every month Xgeva for indefinite is way too much. Anyone else on here ask your docs and report back here on what they say. I will be reading your posts.
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Thank you for that update, Candy!
Has anyone experienced kidney problems as a result of getting Zometa infusions? My MO said this is rare but can happen, and is "usually reversible". I think I'm having anxiety about treatments since I now live alone...
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SFcakes- How long have you been on Zometa? after 5 years or so my MO stopped mine- she said the side effects start to outweigh the benefits in my indolent bone mets. I heard a lecture 1+ years ago saying they really don't know how long to stay on it since people used to die before they had to worry about how long they had been on Zometa. she said it stays in your body for years- I may ask her if she ever plans to restart it- I don't know if there is any data for that. My kidneys were fine on it-
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Hi all, new to this thread. I was diagnosed with triple positive breast cancer five years ago. Just celebrated my five year mark. My back has been hurting and my ortho thought I had some degenerative disc disease. He ordered an MRI. The results came back today and they found an "enhancing osseous lesion" almost an inch wide in my lower spine. My ortho sent results to my oncologist who called me himself today, which never happens. He said he thinks my cancer has spread to my spine. He said in his experience, after looking at the scans, he feels confident it is cancer. He ordered a bone scan and ct scan, to get more answers and also to check my whole body for more lesions/tumors. I am devastated. I thought after my five year mark that I could make plans for life again! My husband and I just bought land in Oklahoma to build a house right near my three precious little grandsons. It is like this day is surreal, like it is not really happening. After much badgering, my oncologist admitted that patients of his whose cancer has spread to their spine don't usually have good outcomes. Can any of you refute that with some positivity?! I need to hear from women who have had this happen and are still doing okay! Sending so much love and hugs to each of you who are in this thread, I am so sorry that life has handed us things that are so difficult. I will pray for each of you tonight, and if you have a moment, please send some positivity my way!
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tld2017, so sorry to hear about your progression after 5 years. I’m not that far from diagnosis, but I also have back pain that is a frequent worry after my T11 lesion was stopped with chemo. So far my scans have been OK, but it’s sometimes difficult to sleep with the pain. My MO doesn’t think I have moreprogression but it’s sometimes hard to tell with lobular cancer.
My doctor told me that people with bone mets can do very well on the HER2+ drugs. I’m hanging onto that hope with both hands.
((Hugs))
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tid2017 - Hello and sorry I can't add the positivity you are looking for, but I did want you to know you are not alone. It's been 4.5 years since my original diagnosis (IDC, stage 3, 5.5 cm, ER/PR+, HER-, no nodes), and I was really looking forward to making the 5 year mark with no progression. Two weeks ago I wound up short of breath, so went to the ER and while they were looking for the usual heart and lung possibilities, they did a CT that showed that the cancer had spread to my ribs and likely spine. They then did an MRI to confirm the spine spread.
I totally understand how absolutely devastated you feel. I still can't really wrap my head around my own situation, and I think it will take some time (if ever). I too have upcoming CT and bone scans - next week, and it is so hard waiting. I have found myself having something like panic attacks, but I also fear that it is the cancer in my spine causing nerve problems. Ever since they found the spread, I've been having weak and tingling arms and legs, numbness and, dry mouth and mental "freak out". I can't decide whether to go back up to the ER and see if this is the cancer in my spine, or just assume it is anxiety and wait for the scans next week. Not supposed to see the doctor to go over scan results until March 1, so I'm terrified right now. I can't tell if the symptoms I'm having are cancer or psychological; maybe some of both?
Thank you for sharing that your doctor told you that spine spread doesn't usually have a good outcome. My oncologist wouldn't give me any sort of idea of anything. She just said they have lots of drugs to try and that each case is individual and you can never estimate, guess, predict outcomes. My whole world has come crashing down. Thanks too for asking other people here to describe their spine mets experiences. I am also anxious to hear what any others who've dealt with this have to say.
I am so very sorry that this has happened to you too. The only "positivity" that I can send to you right now is hope, and that is definitely something. Wishing you lots and lots of luck!
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Dear Cyathea and Threetree, I am so sorry that you are dealing with this type of suffering too. Know that my heart is with you, we are only separated by space but these words, these messages in this group connect us! Threetree, I feel disappointed in myself for saying in this thread that my oncologist said that patients like me don't usually have good outcomes. Every patient is different, with age, other health issues, etc. playing a huge factor in the outcome! I have other issues that definitely played a part in his wording. Thank you, honestly, for reminding me that my situation right now and the words that I use in this thread, can affect others. I am grateful for that, truly! You have hope, my forum friends! I need to put my chin up and face this with the strength that I know I have! No one, not even the very best of oncologists, knows what will happen to us with our treatment, with our bodies. Again, sending love to all here in this forum!
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SFcakes,
I'm 74, and started getting Zometa every 3 months July 2019. After about 3 years my MO reduced the frequency to every 6 months due to potential side effects associated with long term use. The dose, as understand it, is based on weight and kidney function, as determined by creatinine level. I don't know if age is also a factor. I started off at the usual dose of 4 mg. About a year ago my dose was reduced to 3mg+ (I don't know exact dose). I was told this new dose was determined by an oncology pharmacist and the medication has to be prepared special. My creatinine level has always been within normal limits. When I go in for the infusion, I always make sure my current weight and creatinine level are in my record. And I double check with the nurse what the dose is and confirm that it will be infused over 30 minutes.
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tid2017 - Don't feel bad at all about posting what your oncologist said. I actually find personal observations like that helpful in weighing everything and trying to see "the big picture". It's just like those collective statistics we all see where such and such a percentage of those with such and such a kind of cancer usually live X amount longer than some other groups. It's a collective thing, and yes, it is not possible to predict what any one individual case will be like, but I still appreciate seeing those statistics even though I know they might not apply to me, personally. It just helps as it's all one more piece of data to consider. I'm glad that you posted what you did.
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Tid2017- I have had mets in my spine since 2017- they are stable now. I have been on several drugs and each has reversed the mets for a period of time- some people have had 4-5 years of success with their first drug. no one knows how long you have- there are lots of good drugs out there. the psychological stuff is a nightmare- hard to wait and when you have a plan you will feel better.
hugs
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tld: I am also triple positive with biopsy proven spine Mets plus other suspected bone mets in other areas seen on my first scan. I was found to be Stage IV shortly after diagnosis in late 2017. My scans currently show no evidence of active disease and I am still on my first line of treatment - Herceptin and Perjeta plus anastrozole.
I'm a little surprised at what your doctor said...I get it that the spine is not a great place to have metastasis- related fractures but not everyone winds up with fractures. The bone strengtheners discussed in this thread is supposed to help with that. I've never had a fracture or any cancer related pain so far.
As far as "good outcomes" no one with MBC can really count on a "good outcome", but as long the cancer stays only in the bone - people with bone-only mets and HER2+ disease are among those with the longest overall survival for those with MBC.
I agree wholeheartedly with NKB that every one of us is different in how we respond to treatment and no provider can predict anything for any one patient. All doctors can tell us is what the medians are for patient groups.
I can imagine how upsetting it must be to arrive at the five year milestone and think you can exhale, but try to take it one day at a time right now. Don't give up before you start (again). My attitude is - prepare for the worst but still hope for the best.
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Tld2017 - I have been MBC for almost 3 years now and have had lesions in almost every vertebrae as well as many other bones. My bone lesions have been inactive for about 9 months now and I'm still kicking. I'm HR+ HER2- so not an apples to apples comparison
I read about breast cancer - a lot. I read studies etc daily. I'm not a doctor but I've yet to read anything that says that spinal lesions have a poor prognosis. I HAVE read that bone only activity has a better prognosis than if you have visceral disease. It's my bad luck that I've got both. Harrumph.
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tid, no need to apologize for telling us what your doctor said. Most of us have heard all the different angles! When I was given the news, my onc said, “With treatment, you could live years.” I had the presence of mind to say, “Define YEARS.” And she said, “Five, ten, fifteen…” I was diagnosed with bone mets about 12 years ago.
Please allow yourself to feel all the emotions. If you want to be strong, be that. If you want to break down and cry, do that. It may be a roller coaster ride of emotions for awhile. It takes time to adjust. I am so sorry that this is where you find yourself. At least you will have our support, we are here for you. Hang in there. Everyone is giving you great advice.
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Is it weird that I'm crying with relief at reading all of your messages?! Just to know we are not alone, that we all have this support system of dear women - wow, what a gift it is!! Thank you from the bottom of my heart!
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The "years" response my oncologist gave me at my stage 4 diagnosis (six months after stage 2b, single met found in spine, which was actually there from the beginning, just missed) was not particularly relieving, since more than one year is "years"! But it's been two years now and I'm stable, no new progression seen thus far after SBRT radiation to my spine, and I'm on cycle 25 of Ibrance. I'm still working 32 hours a week, and had also been the caregiver for my ill husband before he passed away in December.
I had a mild compression fracture show up on my last scan, almost certainly due to lifting my husband in and out of bed, so my doctor wants me to start on Zometa infusions, to help prevent any further fractures. Reading the drug formulary possible side effects has been slightly freaking me out, that's why I was asking about anyone who might have experienced kidney problems from the Zometa. I think I'm just scared about being alone while trying a new med, I'm sure it will be fine. Or "MBC fine", that is. The things we get used to with this diagnosis, sheesh.
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tld, I'm sorry about your diagnosis. I'm almost three years out from my bone-only mets. Mine are in my spine, ribs, hip and femur. I have bone scans and CT scans every three months. So far, I'm stable. I did have radiation to my hip and spine which really helped with the pain. If you do meet with the RO and they use the word "palliative" please don't freak out like I did. I thought palliative and hospice were the same thing but they're not. Palliative just means it's meant to help with the symptoms but not to cure the cancer.
Keep us posted. I love this group!
Carol
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Has anyone heard any tales of partial or total paralysis from spine mets? The test results from my MRI say that there is a T2 threat to my spinal cord. For the last several days, I've been tingling and numb all over, yet 2 weeks ago, when this result came in, everyone seemed to think things would be OK, in spite of that T2 issue, until March 1 when the doctor is supposed to offer a new treatment plan, now that I'm stage 4 with this. I'm supposed to have another CT and a bone scan next Tuesday, but at the rate things are going, I'm afraid I'm going to become a paraplegic before they can get new scan results and the doctor can formulate a plan. Apparently the radiology department here is quite behind in performing and reading scans due to covid and all the problems of the last couple of year.
After typing all this, I think I've talked myself into heading up to the ER. I can't tell if all this neck and shoulder pain is from tensions, stress, panic attack type stuff, or if it's the cancer in that T2 location. I've always got some neck and shoulder trouble from hunching over my laptop and more. When I got my original cancer diagnosis in fall 2018, results didn't show up on the portal yet and I had to wait for the doctor to call. During the several days I waited for that, I turned into a complete mess and went up to the ER not knowing what to think - again thought it might very well "just" be panic. The surgeon happened to see that I was in the ER and came over to give me the path results I'd been waiting for. He was a gem, but now retired. Turns out that episode was essentially a panic attack, brought on by the wait for the results.
If it wasn't for this spine mets business I would again think that I was just freaking out and reeling from this stage 4 "upgrade" that I was given 2 weeks ago, but to have all this tingling and numbness everywhere all of a sudden for about 3 days now seems like it could be impending paralysis as well as panic and stress. Yikes!
Thanks for listening to my absolute devastation and total freak out problem!
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I have heard of this - when I was first diagnosed (de novo here) I was all - uh hey, feels like my back is about to completely collapse, should I be concerned? No no everyone said, dont worry the scans show its bone mets but the treatment will take care of them! Well, the sacral met grew or was stimulated by my first zoladex shot to where I couldnt move my leg and walk for a week. That got me hauled into the hospital and into the MRI so fast my head spun (it was rather relaxed, lets say, before that even though I was indicating significant pain) as they were concerned about spinal cord impingement, possibility of paralysis, and wanted me inpatient in case they had to do emergency surgery. Heard the next morning that spinal cord was ok, just the sacrum (what I had been telling you people!) and they were going to start bone injection and get me into radiotherapy right away.
Any sort of spinal risk of numbness or potential paralysis I would be in the ER pronto. It sounds like this hasn't just been going on a few hours but a few days. Better to be safe than sorry.
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One other thing, check a dermatome chart online for the T2 and corresponding numbness/tingling. If you have the latter two some other location than known mets areas, ,it may not be mets.
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Sondraf - Thanks so very much. On my way upt to the ER now, but will check the dermatome chart first. You've been a big help!
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Just got back from the ER. The doctor there said it was panic and that nothing in my scans from 2 weeks ago would suggest anything being that seriously wrong at this point. They gave me a prescription for some real low dose Ativan just to have on hand. I don't really want to go down the anti depressant, anti anxiety, etc. path at all, but sometimes just knowing that stuff is sitting on the counter is enough. I thanked him profusely and told him that "it's panic" was what I needed to hear, but he did say then not to minimize anything, it still is cancer that spread to the spine and bad things could happen. They just aren't happening now.
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threetree, do yourself a favor and take one of those low dose Ativan. It is only going to help. I had never taken Ativan before until I was prescribed it during chemo. It was a huge help to get relief from the crippling anxiety. Sure, you could soldier on and tough it out, but why? I found that taking it made things so much better. It isn’t any sign of weakness. Getting a diagnosis of metastatic breast cancer is not a trivial thing. You’ve had a great shock to your system, and that medicine is available to help you cope.
I eventually worked with my pcp to find antianxiety medicine to take every day which is a low dose of Buspar, and it was a game changer. The meds help me get my life back.
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Thanks Divine. So far that bottle is still just sitting on my counter. I had some prescribed too back when I got chemo, but I seem to remember it was for nausea? (off label use). I could be wrong, maybe they just were issuing everyone some Ativan when they started chemo "just in case" of anxiety. I seem to remember that I did take a little bit back then, but that it caused a headache or some other sort of side effect that I could definitely do without. I'm not opposed to taking small doses if and as needed, but I just seem to have this natural tendency to want to "not go there". I probably will at some point, though.
The doctor I saw in the ER today was the same one who discovered and told me about all the spread they found on the CT two weeks ago. Like you, he said this is no trivial thing to hear that you have metastatic cancer, so my total panic mode and maybe wanting a little Ativan weren't at all out of the ballpark. He said they have people react like me all the time, and that loads of people in this situation are on anti depressants and anti anxiety meds, as just a routine daily life thing. Pills, pills, and more pills - I just don't know that I can go there, but I also haven't experienced some of the worst that could possibly happen, so I can't say that I won't ever do it.
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I agree with Divine- with your attitude I doubt you will get into any sort of trouble with Ativan- I have used it occasionally during the day when I litterally could not eat due to anxiety and at night when the mind would not stop with dark thoughts- a panic attack is so unpleasant- got you to the ER, a tiny Ativan occasionally is a blessing. I do understand pills, pills, pills- I was afraid of Tylenol and I have had so much chemo and other meds - be kind to yourself.
glad you are ok.
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Threetree, thinking of you and wanted to acknowledge your trip to the ER today. I am sure that it was a difficult experience for you, but I'm glad you went to lesson your worries about progression of issues with your spine. I am relieved that they did not find any serious additional issues! I have a few pills left of low dose Xanax (.25 mg) from my anxiety of flying but it says on the bottle that I can't drive so I have not taken it even though I most definitely have had high anxiety for the last 24 + hours since the MRI results. Divinemrsm, I am interested in this low dose of Buspar that you have mentioned. I have not heard of it but I will do some research on it tonight!
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Threetree I have spinal cord damage because the spine Mets ate a whole vertebra and choked the cord, spinal cord compression. I had emergency surgery to remove as much cancer as they could, put in a cage and fuse the spine from T4 to T8. I didn't know there were Mets. One day there were zaps nerve shocks down my legs and I went numb from my ribs down. It sounds like your mets has been discovered earlier, so I'm sure your doctors are going to help you with a plan for treatment before anything like that happens. Hindsight, I kept having a nagging back ache, muscle cramps and constipation. I was also losing energy quickly. I was blaming it all on my desk job and hard workouts. The positive you can see here is that I am not completely paralyzed and it has been two years since the surgery. I had radiation after surgery. The cancer has been stable. I walked at the park today, numb toes stuffed into hiking boots. Hugs to you and I hope you can get more answers and a plan soon. None of this is easy to deal with.
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Nkb - Thanks so very much. What you've said is definitely reassuring. Problem though, is that I just read all the side effects of Ativan, and it's pretty much put me off the idea of taking it if I can possibly stand the panic symptoms when they occur. Sounds worse than the Letrozole I take, and worse than a lot of the chemo drugs! I seem to remember having taken some for nausea back in 2019 when I got chemo, and then I walked up to a copy place 2 blocks up the street, and I was woozy with weird glare and other vision issues on my way up there. Then when I got there I remember having to lean against the counter and apologizing to the clerk there for having to prop myself up like that on their counter. Also just found my old leftover bottle from that time (it was for nausea) and like the one I just got today it was for and for .5 mg, so it was a low dose that did all that to me, but I guess it did help with the nausea. I'm really impressed with how well you have managed through all of this and find you an inspiration for sure.
Tid2017 - I really appreciate you thinking of me like you did, it really does help. Yes, it was a hard call to make whether to go or not, but it did really help relieve some of my fears - haven't been tingling and numb for hours now, thanks to just hearing the dr say "it's panic". Just like with your Xanax, I don't think you are supposed to drive with Ativan either - another problematic side effect and reason to think twice before taking. I'm sure that you too are still reeling from your recent diagnosis. I think this all takes quite a while to sink in and adjust to it (if one ever "adjusts" to such a diagnosis).
I too would be interested in hearing about Buspar. I've heard the drug name before, but don't know any more about it. I want to say I heard it being used as an anti-depressant, but not sure.
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Threetree- wow! you are sensitive! I have only taken the .5mg also- mostly at night- but, would never drive with it or drink alcohol- with your past experience I can see why you would not want to take it. Perhaps they have another type that you can consider if needed. panic attacks are just so miserable. I have found that once I share my reason for the panic (with a health professional) I usually feel better- it is hard to keep reassuring yourself that all is ok- I sometimes need someone to say- you are fine.
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Nkb - Yes, I tend to be super drug sensitive all the way 'round, so am always wary. That's why the pills on pills on pills thing really scares me off. So often when I complain of side effect to the doctors, they just say things like, "So go get some (product X)" and I usually don't, but when I do, sure enough, it usually has too many of it's own problems to make it worth taking. While I've always been a bit drug sensitive, that sensitivity has really ramped up since I started getting cancer treatments. I don't know if that has anything to do with it. Sometimes I think the estrogen deprivation from the AI, might make drug reactions more pronounced, but I've never seen on here where anyone else has had that problem.
About sharing the reason for panic out loud with medical staff: I was amazed at how much just talking about it all with some of the staff, diffused so much of the anxiety and related symptoms. Also, after I got that recent bad diagnosis 2 weeks ago, I took a friend to the follow up appointment with the oncologist - something I had never done before. At that time too, I was totally surprised at how much it took away the anxiety I usually feel at those appointments, and all my friend really did was just sit there. We shared "a look" once in awhile (I've known her since childhood, so we can say a lot to each other with just a look), and she asked a question or two very calmly, and it blew me away how much it made the whole experience so much less anxiety producing. I live alone, and I am finding just how much having someone else to just verbalize this stuff to can help.
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Threetree I don’t know what I can add to what others have said. I found out I had mets 9 years after my initial diagnosis and treatment. I suspect they had been going on for a longer time than that. My bone metsare pretty widespread. I was terrified about the scans, the biopsy and also the meds, especially the Ibrance. The bone biopsy had to be done on a spot on my spine. It went smoothly, with no pain to me, and I too went home with a bandaid. The scans all go very smoothly. I went about 18 months on Letrozole and when my tumor marker started to rise, I switched to Faslodex and Ibrance. I just finished my second round of Ibrance. Things have gone well. I have always been Mrs. Side Effect, but with the help of a very light dose of Xanax, I have been able to weed out the real from the tensions involved. It has been a real mental strain, but having a plan helps so much. I am 73 and feeling pretty good considering. Honestly the Xanax helps the sleep, and sleep helps the healing. It is very possible to deal with this and yet heal ourselves when certain areas are giving us trouble. Wishing you all my best and looking forward to easier times for you in the near future, GiGi
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