Bone Mets Thread
Comments
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This is difficult for me to post here. I thought until recently I was no more than stage 1a so the jump to stage IV is huge. I was dx June 13 with mets to my bones (several places) lungs and a spot in my liver. My oncologist said I had about 6 months to live...and maybe more with treatment. What I want to know is it possible to cure bone mets? Has anyone been cured of it? The last month I developed pain in my left ribs...always burning and hurts. I don't do drugs well. If there is going to be a side affect I will have it. Right now I'm in thermaheat and mild radiation for lungs and lymph nodes in chest cavity. I will be doing tamoxifen and Herceptin. It is overwhelming to be here. I don't want to be pitied. I am trying to focus on life not death seeing every day as a gift. My faith in God is my comfort and calm in the storm.
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Hindsfeet,
I have been thinking of you a lot. To be blunt, when we receive a stage IV dx, it sucks. I thought I was stage II for about 6 weeks after my bmx and then my bone met was found by accident. As far as cure, I personally never use that word with respect to my bc. I had a 2 cm met to my upper femur and had rads x15 to the area. It has been necrotic for almost 3 years and I have had no progression. The reason I don't say cure is because it is very, very likely that bc cells are lurking, undetectable, somewhere in my body and will at some point, become active. My hope is that it won't happen for a long time. I am still on my first line tx (switched recently from Arimidex to Femara due se's).
You won't find pity here, since we are all on the same path, but taking things one day at a time is all we can do,so we all carry on as best as we can.Please know that you are in my thoughts.
Caryn
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Hindsfeet, I had horrible burning and aching pain in my ribs, shoulder blades and my right leg when I was first dx'd. Initially I was on a non-narcotic pain med that helped some, but finally reluctantly went to a narcotic that they put me on when I was hospitalized for surgery back in March, and it helped me tremendously for a couple of months. In the past few weeks though -- since being on Anastrazole since January -- I have not had to use pain meds at all, as long as I don't overdo heavy lifting, etc., which will kick off that aching -- but not to the degree I had it when first dx'd. So my point is two-fold... (1) You absolutely need to find a pain med that works for you. The pain from bone mets is not something you have to endure. We're all different, and since you've had some problems with drugs (I did too, since I am very holistic and have always avoided them), you may need to try several to find the one that agrees with your body and relieves your pain. And (2) remember that how you're feeling now is not necessarily how you're going to feel in a few weeks or months. Hopefully, you will also have a great response to your tx and do very well for a very long time, and things will not continue to look as bleak as they might tonight, especially with a new medical team. (((Hugs))) and prayers that the treatment you're getting now and will start in the near future will turn things around for you. In the mean time, figure out some pain meds that work for that rib pain! Deanna
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Welcome to the club no one wants to belong to, Hindsfeet. What you're feeling isn't out of the ordinary. I was diagnosed about 20 months ago and was told that I had a very bleak outlook and prognosis. However, I have another oncologist who says that he sees no reason that I won't be around for a lot more years. There are plenty of people here with diagnoses similar to yours who have been around for quite a while. So, I'd give you the advice my husband gives me: Don't believe the statistics! I know people who were given "6 months or less" and lasted many years (and are still going). So hang on to hope. Get pain meds that work (I have a hard time with them too with side effects, so you may need to try a few as Deanna said). Once you find your feet again and catch your breath again from being knocked to the pavement (figuratively), think about finding an oncologist who believes in you and believes in hope. It makes a huge difference.
Hugs to you,
Terre0 -
welcome to a great group of women all dealt a tough dx. I don't understand your onc guess at length of life. Only a much higher power than him is capable of predicting lifespan. Did you seek a second opinion? I was dx with bone liver and lung mets in February and doing fine. Take a deep breath and understand you are in shock. Chemo is doable if necessary down the road. Right now just focus on the plan your oncologist needs to map out for treatment. Your area isn't mentioned here, are you at a cancer center?
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Hindsfeet, I'm wondering if you have posted correctly in saying you were diagnosed with stage iv in June of 2013. Did you mean 2014? I hope you don't mind my asking because you go on to say the onc said 6 months and here it is 13 months from June of 2013.
In any case, I was sad to read that your onc put such a timeframe into your head. I am not a doctor and don't know your details, but I have seen women in this stage iv forum live a number of years with a stage iv dx. And your attitude is right, many of us like to say we are 'living with bc, not dying from it'. God bless you and I hope for all good things for you.
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Totally agree, We are not like off the shelf goods with an expiration date
In fact when my pulmonary consult mentioned the stats regarding MBC with mets to the lung were months to x years I asked.."Starting when?". I am really impressed with current advances in treatments and results for metastatic breast cancer, We deserve a smart onc who will personalize all our treatments..don't we?0 -
Momonana6 - well said! Love the "expiration date" and "starting when?" I don't know how long I had bone mets before they finally figured out why I hurt so much. I'd been in pain for over six months. So, when does my time start?
My first oncologist gave me a time limit. Not a time frame, but a time limit, as in "plan your life around not being here for more than 3 or 4 years". My new oncologist says "plan your life around being her 15+ years or longer because we just need to keep you stable until the cure is available." The new oncologist is funny as heck; great sense of humour so I'll pass along your "expiration date" and "starting when?" when I see him as I'm sure he'll love it and use it.
Terre
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My onc initially said on dx that as long as I was stable on hormonal therapies I could live with bone mets indefinitely; then 4 months later when I had progression and he started me on chemo he said my prognosis was 5 years but that he knew a couple of women who had survived for 10 years. So, go figure....
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The truth is with all of this is that they don't know just as we don't know. A lot of it depends on how well we respond to the drugs that they prescribe for us.......for some they work well and others, sadly not. With each and every drug given we hope and pray that this is the one that is going to keep us stable for a very long time and that is why I think we get so down when that is not the case........we build up the hopes only to be disappointed. The easiest way to get through is to take it day by day then the hopes don't build and the disappointment is less.
I always hope for all that we each find 'the one'.
Love n hugs. Chrissy
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Well said, Chrissy.
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Hi. I'm new to this thread but I have posted on liver mets and Xeloda threads. In Feb I had CT scan and liver and lungs were stable. I was taken off Xeloda and put on Navelbine. After first cycle of Navelbine TM's started to rise. Onc left it until 4th cycle(saying that sometimes it takes time to show reaction) and then I had CT scan. I was having herendous pain everywhere and finding it difficult to walk. I had nausea and vomiting. I lost about 10lbs in just 2wks. The CT result showed no progression in lungs or liver but my TM's had gone from 76 to 900. The onc concluded that maybe the pain and TM climb was due to progression in bones. I had MRI scan(awaiting results). I had been in Ibondronic acid tablets for 2+years and had no pain until May this year. While waiting for MRI I was given a shot of Denosumub and Aramosin tablets. I cant believe the difference. The pain has subsided significantly and no sickness. My appetite is back and I feel well again. Onc thinks that the Ibon Acid had stopped doing its job. Next apt is early Aug to get MRI results and TM's. Meanwhile I will be continuing with Aramosin and Denosumub.
I look forward to hearing from anyone on this combo. But it's so good to know you are all out there giving support.
XX
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Hi Motherflush and welcome to this thread. I haven't been on the combination you are on as I am on Femara but I hope it does well for you and keeps you stable without pain.
Love n hugs. Chrissy
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thanks chrissyb . Will keep taking positivity from you all.
(Hugs)
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Thank you ladies for hearing me out. My mets diagnosis was Friday, June 13, 2014. A few weeks before that I was dx stage 1 a in left breast. I was stage 1a 2011 (mastectomy of right breast).
Reading bones mets here is helpful. I have bone mets in upper and mid back (spine) and lower back and right hip...also in femur and one in right arm. I had pain in my back and left ribs that I assumed was a pulled muscle. Right now my upper spine is on fire. I thought my vertebrate collapsed Friday night. I was in so much pain I couldn't turn to right or left...barely walked. I was scared of a compressed vertebrate or bulging one. The next morning I could hardly stand or dress. I thought about going to the chiropractor on Monday, but encouraged by others to go to the ER. I was in overnight, which worked out well cause now I'm in front line to see the oncologist I wanted to see here in Los Angeles. I've come here for a second opinion. The doctor at the UCLA hospital gave me a pain drug that worked. Hope to pick it up tomorrow. The heating pad is a huge help.
I can't take anything with bisphosphonates. My oncologist gave me a prescription for Fosamax a few years back to prevent bone cancer. One pill also killed me. My face swelled up, tongue and throat. It looked like I was having a stroke. Could barely walked. I was so upset that I went back to my oncologist with folded arms and a scowl on my face. She said it was harmless.
I noticed tonight a slight dent in my right femur. I know I have a tumor on the right and on the left one. Is it possible the dint is where the tumor is?
This is all new to me. I didn't want bone mets cause I don't want to be helpless or have broken bones.
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Hindsfeet, that dint is not likely to be where the mets are. I do want to address the pain you are in, when you see the onc talk to him/her about som rads to ease the pain particularly your upper back. Rads not only eases the pain but kills off cancer as well. Sometimes when you get rads your pain will increase a little (not always) but this is nothing to worry about, it is just the cancer protesting about being killed off. Once you get your treatment going and you start responding well as well as getting the right meds to control your pain, you will be surprised at how well you will feel.
I do hope you mange to get everything sorted soon.
Love n hugs. Chrissy
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Hindsfeet, I see where I misread your date of diagnosis, mistaking the simple 13 as '2013'; so sorry for my mix up.
I am glad to year you're seeing another onc for a second opinion. You don't say whether you are hormone positive or negative; if positive, you would/should be given anti hormone meds. That is different from the biophosphates. And hopefully the new onc can address your pain issues. As chrissy says, rads help many women with the pain associated from bone mets. Best wishes to you with your new appointment and plz let us know how things go.
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Welcome, MutherFish. It sounds like you've had a really terrible time of it for a while. I'm so glad you found something to control the worst of the symptoms! I hope it works for you as long as you need it! If I'm nausea or in pain the whole world is dark for me so I understand what a relief you must feel. We'll be sending strong good vibes your way. Waiting for test results is the longest wait that there is! I'm on a different set of meds than you are so I can't offer good info in that area but I'm sure you will find someone with experience here. I have never "met" a stronger, more compassionate & caring group in my life. The help me in some way, big or small, every single day! I hope you find the same support here.
ChrissyB, day by day! That's exactly right. One step at a time is the way to not let Stag IV take over everything! You said it beautifully.
We're at the beach in Kiawah Island, South Carolina for a few days with family. Hearing the sound of waves mixed with kids happy voices is good for my soul! I hope you each have a positive, soul-touching moment today.
Virginia
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Thank you. I have one vertebrate that feels as it is swollen...below neck. It this typical? Will it go back to normal after radiation? Will the radiation make the bone or spine fragile? What about chiropractor adjustments? Right now, I'm not sure what is normal and what is not.
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Hi hindsfeet,
My bone mets presented as a crushed vertebra, and it was pressing on nerves that made me numb from the chest down. The MRI showed mets throughout my spine and ribs, and my rib where it joins the backbone was really painful- felt like a knife through my back. I wasn't sure I'd ever walk or feel well again in the summer of 2011. I couldn't drive, of course, and I was beginning to accept a life of immobility. We had extra railings put up in the house and shower so that I could navigate the stairs independently and shower safely.
Along with starting the hormonal drug Faslodex, I had 15 sessions over three weeks of rads to my back in the specific spot where my crushed vertebra was pressing on my nerves. I was taking steroids and hydrocodone to help the pain and swelling, but was in really bad shape. The only hope I had was when the radiation oncologist told me that it was possible that my bone would heal after the radiation, and that I could possibly get my feeling back, and he was sure the pain would be helped.
I didn't really start to notice the improvement until a couple of weeks after my rad treatments, when the pain lessened and the feeling in my body slowly came back. By Fall, the pain was gone- only needed the occasional Advil and while I still had some tingling in my feet, my balance was back! As the year went on, I regained all of my mobility and currently take no pain meds at all, as I feel very well. I drive, garden, cook, entertain, walk my dog (never thought I'd ever do that again) and enjoy my life in between my treatments and scans. I'm very grateful that the radiation treatments, along with the cancer meds, were available to give me back my quality of life.
So this is a long but I hope hopeful, post to answer your question about whether your back might return to normal after your rads. It will definitely improve, the bones can re-grow after the tumor is radiated, and it shouldn't make your bones more fragile. You may be given a steroid temporarily while you have radiation to stop the swelling in your vertebra until your rads are finished.
I notice you can't take bisphosphonates, but you might be able to take a drug called Xgeva, which is not a bisphosphonate, but does strengthen your bones. It's given by injection once a month-easy peasy- and will definitely improve the strength of your spine. I took it for two years, but now just quarterly, as taking it long-term can have some of the same side-effects that taking Fosomax long term can have. I didn't do well with the Boniva or Fosomax either when I was stage 1 and quit them. But Xgeva hasn't been a problem at all.
Good luck to you. It will get better!
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hindsfeet,
Radiation is very, very targeted and, as far as I'm aware, doesn't make the area fragile. So many of us have had it to spine, pelvis, femur and other bones and I don't recall bone/spine fragility being an se. On the contrary, rads has allowed some of the damage done by bone mets to heal! As far as chiropractic tx, if your pain is caused by mets, I would venture to guess that a chiropractic tx won't help and may in fact harm bones made fragile by cancerous lesions. This is not a statement of fact so if anyone has different info, please speak up.
Rads have been helpful to so many of us and not just in terms of pain. My bone met is and has been completely necrotic for almost 3 years, after 15 rads sessions. I wouldn't hesitate to use rads again if I develop further bone mets.
Caryn
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Thank you Vadre. I'm feeling quite well at the moment and appreciate the support from you all.
Sandilee/exbrnxgrl I feel it is inevitable that I will have rads to spine and femur as the mets are extensive in both these areas although every other bones in my body are also affected. I was apprehensive about it but after reading posts from people like you giving positive feedback I'm feeling a little better about the prospect.
Since being diagnosed with stage IV in April 2012 I have been very lucky as far as QOL. I have been able to carry on almost as normal. I'm hoping that new meds will work for me now as it is a kinder option than chemo.
I do eat healthy and make sure I get all vitamins etc I need from my food. To date I have had no trouble at all with bloods. Do any of you ladies take supplements to help keep immune system and bloods good.?
(Hugs) Helen
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Mutherflush,
I take calcium, magnesium and zinc together. Then D3, vit C and b complex.
I haven't posted on this thread before but really need to ask a couple questions.
My last scan results have me really confused. So far my main mets (I've had some come and go) have been L2 and T9. This last scan had L2 and L5 with no mention of T9.
The weird thing is, the L5 had a history! What I mean is it said L5, SUV 4.5 previously 3.2
How could it be a new met if it has a "previously"?
My onc didn't know. I feel like he's not explaining things to me anymore. Has anyone else had this happen? I'm seeing him again on the 16th. I'm thinking of calling his nurse and telling her I really need to go over my scan again with him as I just don't understand. I've felt so frustrated since my last appointment.
I'm at a major cancer center and have previously really respected my onc, but he seems to be unprepared for our meetings.
I guess I'm just venting. There were a few things that made me feel like he hadn't really looked at the scans before seeing me.
Thanks for letting me vent!
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Kudra, It can be frustrating to be what seems to be a number in a large health care facility. Does your oncologist have a nurse practitioner or physician assistant on board in the practice. What may help is to ask one of them to get the radiologist who signed off on your scans to specifically address your points. That should work and hopefully give you some clarification..to some good concerns generated by the report.
When I was diagnosed with metastatic breast cancer with mets to the lung (in December 2013, the scan results were more direct and led to further need for cell analysis via a VATS procedure to my right lung. Just recently in looking at my body scan results the appearance of change in bones was noted. Since I am on Herceptin and Faslodex and CA marker numbers are lower...the oncs are inclined to stay the course and rescan in 3 months. Since I am in a large health care cancer facility it is great to have the opinions of many professionals in their ca specialty.
I would suggest checking the availability of the NP or PA in your onc's practice. That would be great. Keep asking any questions re tests or treatments....it is about you and your need to know. Go for it!
Hugs, Momonana
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Momonana,
Thank you for responding! I would love to talk to the radiologist! I'll call my oncs nurse tomorrow and ask if I can do that among other things. I'm just one of those people that needs to feel like I have the big picture in my head.
Up until now I felt like I did.
I'm really glad your numbers are going down! I am also on Faslodex but also Arimidex. I'm probably changing meds in the next couple of months. Everything was working really well until recently but things are starting to grow again. I had a good run with Faslodex but it's time to say goodbye. I saw a post on another thread where a woman wrote a break up letter to Faslodex. It was great!
Thank you again!
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I wanted to clarify something to make sure I don't mislead anyone. The Faslodex/Arimidex combo for me has been wonderful. My side effects have been minimal and I've had a lot of shrinking mets while on it. I didn't want anyone to think I of either of these meds as negative because they have helped me so much.
Sometimes you just have to switch after a while if your body gets used to something.
Hindsfeet- I also won't use the word "cure" but my bone mets receded dramatically in my first few months of treatment. I also had a met in my pancreas that is now gone! There are wonderful meds out there. They just have to find the right fit for you.
When I was first diagnosed at stage 4 I pushed my oncologist to give me a time frame. He wouldn't. He did give me some statistics, but here I am almost 2 years later and people who haven't been told don't know I'm ill. I work in the yard, go for walks and cook a lot. I'm just saying.
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I am encouraged. Thank you. It is good to know my bones will recover and heal.
I've been feeling if I can't get rid of the pain that life is nothing but down hill. I am getting low grade radiation to several areas with heat hyperthermia. I am seeing a oncologist specialist at UCLA Monday. I hope she will be able to help me. I need to get on Herceptin and get the shot that doesn't have bisphosphonates, xgeva...got to check it out. Unfortunately I seem to fall in the 1% of everything. For example, I was told after mastectomy for stage1a that with the mastectomy, surgery alone for a 1.8 C her2+, grade 3 tumor that with surgery I probably wouldn't have a recurrence. After my first two stage 0 lumpectomies I was told the same. I was told the odds of Herceptin hurting my heart was very low. After 4 months I was pulled off for drop in EF. I was told no side effects with Fosamax. It almost killed me (swollen face, tongue, and throat). So, you can see why all this is scary and why it is difficult for me to try something with serious side effects. However, I am now on Tamoxifen, and getting radiation. Something I thought I would never do but now the risk of dying of cancer is greater than risk of these drugs. Since Tamoxifen I'm having sinus headaches, and feel not as well. Maybe it's the radiation. Looking forward to feeling better. 0 -
I receive xgeva shots monthly handling se fine. I also have the taxol/Gemzar combo 3/1 cycle. I tolerate the shot of xgeva by starting the cycle with the shot at time of infusion. My infusion includes premeds of steroids and Benadryl. It works for me. I've had significant regression with this combo. Best of luck. Btw faslodex wasn't my magic bullet so I'm glad to hear women having success with that med. just confirms what others have said everyone is different.
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Hi Ladies, just got my scans back (the results) yesterday and my lung tumor is bigger, as are the spots on my bones plus new ones on my skull, in the 2.5 months since last scans. Markers are up to 480. Doc is taking me off A/A combo and starting me on Faslodex as of yesterday. I'm thinking this is going to be like the little kid roller coaster ride, slow ups and downs, although I am waiting for some stability or better yet backwards movement. Sigh. I can't do xgeva because of the sorbitol, and every time I get Zometa, my side effects are worse and longer lasting than the time before, even with slowing it (the drip) down, so I'm not going to get Zometa anymore either.
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Skylotus, the Zometa is not a treatment but a bone strengthener. You can help your bone strength with Vit D, calcium and Magnesium supplements........it doesn't work as well but it does help with the bone strength......I know this as I can't take any of the bone strengtheners and have managed to still have stongish bones after five years on an AI.
Yes this disease and it's treatment can and does have us on a proverbial rollercoaster........one day up the next down........the best thing we can do is hang on for dear life until we find the med that will put us on that level ground before we build up speed ready for the next lot of ups and downs.
Good luck with finding your stabilizer!
Love n hugs. Chrissy
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