Bone Mets Thread
Comments
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Annie, I am so sorry that you were put in such a demeaning position. Your doc did not clarify his diagnosis or justify the need for his recommended treatment. Your case is complicated with your dx of MS. So glad that in the final analysis he heard your concerns...hooray for you, Annie ! Prayers for a successful treatment plan. Hugs, Peg
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Annie, damn! Not the answer we were hoping for at all and it's quite understandable that you and your family are upset. The surgery for me was extremely painful so be prepared to take full advantage of any and all pain meds offered. For the first two weeks after surgery I needed help in the shower as it was painful trying to lift my arm but by the end of rads my pain was gone completely and I was left with the healing side of things and each week that went by my arm and shoulder got better and stronger.
I don't know if the mechanics of the surgery were mentioned but in order to get the nail in, they must first drill a hole in the ball of your shoulder. Then the process is to hollow out the humerus before placing the pin and to anchor the pin they put two screws top and bottom. It is the screws at the bottom near the inside of the elbow that caused me most pain as they have to go through the muscle by separating the fibers..........we all know that a muscle injury is painful.
I don't want to scare you, but I do want you to know what to expect and I only wish that I had someone who could have told me at the time.........the op is not a hard one and the end result is a good one. Be prepared for when you have the rads, that your pain may flare before it diminishes but the flare is only for a few days and if, like me, you are still on pain meds, those flares won't be too bad so a couple of days after the rads finish, your bone pain will be gone and that's a good thing.
Good luck with it all and if you want to know more just ask.
Love n hugs. Chrissy
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Oh, Annie, I'm so sorry about the results of your x-rays, but thankful they found the problem before the bone totally shattered. I had a rod put in my femur back in March, and although it was admittedly rough for a few weeks, once I got beyond the two to three week point, things improved fairly rapidly. I was a sorry mess when I was in the hospital, including being in tears for much of two days and nights, feeling my health and life were on an unstoppable downward slide. But our bodies have such an amazing capacity to heal and rebuild, so don't let the surgery scare you, and just be prepared for a bit of an emotional roller coaster. But remember that things will get better once your arm is repaired.
I'm glad you and your onc are on better ground. So many women go through bc rather blindly -- like a women sitting next to me in the chemo infusion room who asked me if that was chemo flowing into her body (true story) -- and sometimes docs are taken aback when we ask real questions and expect answers. Thank goodness for BCO! Sharing our stories empowers us to be more informed patients, and studies show that patients who take a more involved role actually do better. So don't EVER back down from thinking and questioning what you're told! (((Hugs))) Deanna
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Hi Girls, I hope you're all feeling well. It was my eldest daughter's birthday so we spent the day making her feel special. She turned 23 today
. We took her to a winery for lunch and sat by the window overlooking the vineyards. What a beautiful view with all the fall colours.An emotional day for me. I wasn't feeling the greatest today but I put on my smiley face and enjoyed the day with the girls. My head is still spinning from yesterday's news. I can't wrap my head around it.
Peg thank you for your prayers! It means alot to me.
Chrissy and Deanna thank you so much for all the information, at least now I have an idea of what to expect. I feel so scared about this surgery, I sailed through the other 6 and amazed everyone but somehow I feel they were easier than this will be. Deanna were you able to walk after the surgery on your femur? And Chrissy could you still use your arm a little after the surgery? I also wondered is it a large incision?
Does the surgery affect the cancer at all? I'm wondering if they will take some of the bone and check the patholgy for hormonal status? I guess that would be a good time to find out right? Sorry for all the questions. I'm feeling especially weak in my lower back today where I have a met on L5. Now everything is making me worry and feel like my bone is being eaten away by this bloody cancer!! It takes such a toll on us emotionally and physically.
It makes me wonder how good these bone scans are. There was nothing there in June and now I have this in October. If these bone scans don't show osteolytic lesions that well then why are they not using them in conjuction with an x-ray? I'm so confused about all of this. I have a list of questions for my next appt.
Hugs to all,
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Annie, yes, I could still use my arm after the surgery but not lift it for a couple of weeks and then anything that was low was fine as it wasn't using the muscle that the doc had gone through. I couldn't lift heavy weights but light things were fine so long as I used both hands. For me, the scar is a divot on the ball of the shoulder with a scar that is maybe an inch long so not very big at all and now, five and a half years later, the only thing that is really visible is the divot.
I know you will do fine with this surgery, it's not long so neither is the anesthetic. If your doc has ordered a biopsy be taken then it will be taken but I would ask him and if he hasn't, request that one be done.
Annie, it's really a very normal thing to be thinking that your bones are disintegrating but really, in most cases, bone destruction is a reasonable slow process.
Hoping you start to feel a little more settled soon.
Love n hugs. Chrissy
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Chrissy thank you for your reply. I feel a little better about it now. You said bone disintegration is a slow process but it looks like this happened to me in 4 months. That is why I'm so worried. I don't understand how the scan in September didn't show this hole in my bone? And a month later it's visible on an x-ray. You mentioned that was 5 and a half years ago for you. I'm so happy you've done so well. Do you have multiple bone mets and what is your current treatment?
Last night my lower back felt really weak and all night long my right hip has been really aching. Is it likely the infusion that is causing this or can letrozole cause hip pain?
I hate being so worried about every pain in my body but I guess this disease makes you do that. I am now wondering if I should have that x-rayed too since that's what showed the troubled in my arm.
One more thing, how long of a hospital stay is it for this surgery? Thanks for all your help!
Have an amazing day everyone,
Annie
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Annie it's very possible that cancer has been in your humerus for a while and the scans haven't picked it up.........mine wasn't picked by my doc to whom I had been complaining for a year about the pain. It was unfortunate for me that I also had Bursitis in my shoulder and was at the time of discovery, being treated for that.
The scans are still not perfect technology.....they are and have improved over the years but they still cannot look as if with the naked eye and those techs who read them are still only human and do make mistakes in their interpretation. We have to learn to accept that fact and do what we need to do when new things are discovered.
Annie I was on Arimidex and a bisphosphinate (sorry, can't remember which one) but the bisphosphinate didn't agree with me so we stopped that pretty quick which just left the Arimidex. I continued on this AI until at fifteen months I had a scan and new mets were found. At this point in time I was changed to Femara (Letrozole) and I'm still on it as we speak. After twelve months of Femara those mets had disappeared and the Humerus has healed so right now I am NED.
Femara (Letrozole) can and does cause joint/bone pain along with a few other SE but not everyone gets the worst side of these. I have been lucky as far as the SE go as even though I have had pretty much the gammut of the SE listed, they have been reasonably mild in comparison to others and have disappeared as quickly as they came. The only ones that have hung around are the hot flashes (which are pretty mild now) and the joint/bone pain. I take pain meds everyday which keeps me comfortable.........I stay busy and always do the thing I love to do.
Sitting around and worrying about what the cancer may or may not do or whether this or that 'new' pain is the cancer shifting and being active again is not for me..........I live life to the fullest every day and when the cancer rears it's ugly head again I will deal with it........but that day is not here yet.
Annie I hope that you can learn to relax more as you learn more about your cancer and the treatments available.......knowledge can do that for you. I always live saying, 'yesterday is done so what was done cannot be undone, there is no tomorrow as when it arrives it is today so don't worry for tomorrow, just deal with today'.
Just to add, my hospital stay was five days but that was more for pain control than anything else.
Love n hugs. Chrissy
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" I live life to the fullest every day and when the cancer rears it's ugly head again I will deal with it........but that day is not here yet.
I always live saying, 'yesterday is done so what was done cannot be undone, there is no tomorrow as when it arrives it is today so don't worry for tomorrow, just deal with today'."
Chrissy,
You're a gal after my own heart. Don't let worry rob us of today.
Caryn
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Chrissy, wow you are a Godsend and thank you so much for all your knowledge and encouragement. I know I have to stop with the worry, I think sometimes having MS and being diagnosed with bone mets is my hardest challenge. But I guess I have to deal with it in the same way as I have dealt with my MS for the past 15 years. I did not let it stop me, I always said I may have MS but it will not have me. I guess I should look at my new challenges in the same light. It makes me so happy to see how well you are doing and your positive attitude is so uplifting. I cannot thank you enough, I feel a sense of peace now.
Caryn, I've read many of your posts and they are always uplifting and inspiring. Thank you for that!
And to all the other incredible women on these boards, each and everyone of you are amazing and are helping to lift my spirits. I wish the best for all of you. I'm so grateful to have found these discussion boards.
Thanks and hugs to all, Annie
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Hi Annie, I hope all goes well for your surgery. I had a rod inserted in my humerus Sept '12 and the op went very well, the surgeon took a bone biopsy also. I had radiation therapy following surgery. My bone was badly eroded and I'm not supposed to lift anything heavier than a kettle that is 1/3 full. I did all my exercises and my arm was back to fully functioning bar the heavy lifting. Just to warn you I think I may have got too complacent and stopped doing my exercises after a few months. Anyway I wound up with lypmhoedema and it took ages before it was diagnosed (long story). It probably won't happen to you at all but I wanted to warn you and let you be aware as the sooner it's treated the better. Hugs xx
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Aoibheann thank you for your story! I will be sure to do whatever I need to do to avoid lymphadema as a friend of mine is suffering from that at the moment and finding it difficult. I'm assuming they will take a bone biopsy during my surgery, I will make sure of that! I'm currently experiencing some severe hip pain as well and of course my mind is spinning but trying very hard not to go there. I'm happy to hear your surgery was successful as it has been for so many others. I'm just looking forward to some pain relief as it is very difficult to use this arm. I still haven't received a call from the surgeon for my consult so I will be calling them today. Why is there so much waiting?!
Have a great day!
Annie
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After going through surgery, six round of taxotere and cytoxen two years ago, I was diagnose with bone mets of my lower spine. Disk L3, L4, L5 came out black in my Pet Scan. It's also in my right femur bone marrow. I am totally insane over this diagnoses It mutated to HER2+.
My back started hurting three months ago and the radiologist found it looking for a herniated disk. My hair is finally grown out to the point where it is cute again My mother died three months ago and they want me to begin chemo ASAP. There goes my pretty hair and I'm suddenly stage IV.
How on earth could this possibly happen. I did everything they told me to do. I'm insane right now.
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Oh, MissingAlley, I feel your shock and dismay, and I'm so sorry.
I've only been dealing with bone mets since January of this year, so am far from an expert. But I'm wondering why you need chemo right now, rather than an anti hormonal drug. Is that because of the Her2+? And are they absolutely certain that's what it is (Her2+), and also that you were Her2- in the past? Just some questions that popped into my mind as I read your post...
I don't know where you live, but with this kind of "tricky" recurrence, I would absolutely seek an opinion at an NCI-designated cancer center, just because they see the most bc and will have experience with this kind of recurrence. (((Hugs))), and glad you've come to BCO and this thread, although I wish you never had to be here! Deanna
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Thanks DLB823,
I was wondering the same things as you. Right now I'm in radiation for pain relief and I want to change from Tamoxifen to Aimidex. My MO said it means more Taxotere with Herceptin. I'm in the mid-west so I'll check out your recommendation because the idea of losing my again absolutely sucks to me.
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Dear MissingAlley, we are so sorry to read of your problems and hope you find suitable treatment. The lovely ladies here bwill be helping you all the way, they are very knowledgable and compassionate and we are glad you found us here.
All our best and (((HUGS))) from the Mods
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MissingAlley, so sorry you have had to go through all of this. I understand your shock and fear. I am knew to these boards but have been blessed to have the help of so many knowledgeable women. I'm just curious how they know for certain it has mutated to her2+, you didn't mention a biopsy.
I hope the radiation provides you with great pain relief. So sorry to hear of the loss of your mother. I too lost my mother just two months prior to my breast cancer diagnosis. I understand how hard this must be for you. My thoughts and prayers are with you. I hope you get answers to your questions.
Hugs, Annie
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Hello to everyone! I just received a call from the cancer centre saying I need to get my left arm in a sling right away. I'm apparently at a very great risk for a fracture.
This news is really worrying me, I guess I won't be able to use it that much or drive my car for that matter. Feeling a little deflated. I hope I can have this surgery done soon.
Wishing you all a great weekend
Annie
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Hi everyone,
So sorry to hear of your recurrence and metastasis, MissingAlley. It's such a shock to learn that it hasn't gone when you just start to feel confident that it has.
Does anyone remember how long it toak to find out whether tamoxifen was working? Is it a question of waiting tumour marker results? Also, do you know how much of your tumour(s) is/are ER+ ? Thanks
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I was wondering if anyone had radiation to their bone mets and had the cancer return? If so what happens then? I had my femur radiated in March but now I'm having increased pain in that area. I have a petscan scheduled next week. My Onc mentioned that they can't radiate an area more than once.
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incognito,
I had rads to my femur as well (in the Bay Area too). I hope you haven't had progression, but I am also under the impression that you can't repeat rads to the area. I know it's hard, but wait until your PET results. Thinking of you.
Caryn
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Hi Missing...sorry to hear of your diagnosis, but hoping for pain relief for you and glad you found us.
Tracey - My understanding is that it depends on the amount of radiation you've received to the area. It may be possible to radiate an area more than once, but only if you're under your lifetime acceptable dose for that area.
Annie - don't know if this helps at all, but I was told the same about my femur; i.e., high risk for fracture (not to put it in a sling..). Ended up going from "sore hip" to in a wheelchair in a matter of hours. Scary as heck when they tell you that you're at risk for fracture - I was totally freaked out. That was also how I found out I had recurred. I had surgery to put a pin in my leg about 2 weeks later and once I finished surgery, I was allowed to be completely weight bearing on the leg. Of course, it hurt like hell for a few days, but once I got past the surgery pain, the change for the better was amazing. I hadn't realised how much my hip hurt until my femur got fixed. I also had radiation to my femur, hip, spine and rib, and that helped (but it did make me tired). Fingers crossed you get your surgery soon.
Hugs to all,
Terre0 -
Annie I was told that I was at great risk for a fracture, even a hard bump could do it but I was never told to put it in a sling and the reason being, you use your arms for balance and with one in a sling, we are more liable to fall and that would be disastrous! The force of a fall would not only break the bone but shatter it and that is a much harder break to fix considering the bone is very soft from the cancer.
Here's hoping you get your surgery soon!
Hi MissingAlley, so sorry you have found yourself stage IV. How can this happen? you ask........it is a question we all ask but never get an answer to. Don't doubt your treatment from first time around, this sort of thing happens and if it didn't we really wouldn't be looking for a cure. I know the last thing you want to do is loose your hair again but it will be the Taxotere that does that, not the Herceptin and that on is your life saver for Her2+. Unfortunately, Herceptin cannot be given alone to begin with, it must be given with one of the Taxanes and the most common one used is Taxotere. Once your first line treatment is complete, the Taxotere will be dropped but you will continue with Herceptin plus an AI (either Arimidex (Anaztrozole), Femara (Letrozole) or Aromasin).
Take a deep breath and try to relax a little (yes, I know it's hard) as getting yourself all tied up with this dx will not help. I get you are fearing for you life right now but the reality is, that even with Her2+ BC it is possible to be stable for a very long time. Yes your life span has been shortened but it is still possible to live a long life and do all the things that you planned to do.
Good luck with your treatment and please do stay in touch with this thread.
Love n hugs to all! Chrissy
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I'm back from Victoria & my fill in onco appt, my onco is on sabbatical til December. Not great news with the bone scan, there does seem to be some progression, however, this onco says he wouldn't have redone the bone scan so soon, he would have left it for a couple of more months as he feels it could be something called a flare? With my tumor markers going from 59 to 14 since May, he's not sure but thinks that they may be healing but we won't know for sure til another scan. So sounds like just what all of you said, boy are you guys smart!!
I'm also going to get a port. I'm tired of them poking one arm with the really good vein, which I'm not supposed to have anything poked in either arm (bilateral BC with nodes on both sides) But I can't get them to get through their brains that they have to do pamidronate & blood work somewhere else.
I will have to catch up on all the pages since I was gone. Hope everyone is well. Cheers, Dee
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Lowrider54--- I hope your still on this site...cuz you really gave me enormous hope...I was diagnosed in April 2014 with Bone Mets...first diagnosis was 3/2010 with Stage IIb breast cancer (chemo...surgery...chemo...radiation)...7/2012 Uterus cancer...no treatment (totally hysterectomy)
This Stage IV METS...has had me on a rollercoaster of emotions..worries...I'm only 53....I so had other plans for my 50's since my children were finally all gone from the nest....
I just don't like the unknown of this chronic disease...you sure can't plan the future...you just have to live in the very PRESENT...that's for sure...which I have finally come to terms with...but I'm am struggling with the thought of surrendering to "DEATH"...I still am seeking thereapy for that and starting to go to church and talk more about dying...so i can come to peace with it...I know...I may cont...to live 10...15 yrs ...WE never know with this Bone METS...I want to live for the sake of my new grandsons...2yrs...7mths...and 6 mths...I so was looking forward to be a grandma... and hang out with these boys...which i do...I am always around them...except the one in California...she is in the Navy...so it's skype and photo's...for now...I should see him Christmas...I am praying...but thank you again for giving me hope...
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freebird53,
Lowrider54,Sharon, passed away in Nov.2012. I'm sorry to have to tell you this. We all remember her fondly.
Yes, living with mbc is strange, but enjoying each day is how we can triumph over bc. BC may win eventually but not a minute before it has to.
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Welcome back, Dee!
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Thanks KCM!
Freebird, yes, you can only live one day at a time, sounds like a cliche` but it's true. Keep a good thought on seeing those grandbabies for many years to come.
I agree exbrnxgrl, I never want to give BC more than I have to, not one minute more. You are an inspiration to me.
Hi to everyone else here, I just can't seem to get back to all the pages I've missed, hope everyone is doing OK! Dee
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Hello everyone. I am new but I've been following this board since January 2014. I originally had BC in 2009. it was IDC ER/PR+ HER2 negative. Found the reoccurrence in January 2014. It was Mets to my T spine and L spine, left femur, and left iliac, skull and lymph nodes. I probably had been living with mets for approximately two years prior to the confirmation it was mets. I had a biopsy done. It came back as ILC and ER+PR- HER2 1+.
I am currently on Adromyosin and Cytoxan chemo. Monthly shot of Xgeva as well. My tumors keep on spreading. Having a hard time slowing them down. My question is should I have my biopsy retested? I am concerned about the status of HER2 1+. Also concerned about switching from IDC to ILC. My original diagnosis in 2009 was IDC with lobular features. I read somewhere that the status of 1+ in HER2 should be looked at as positive enough to be treated with Heceptin. I wonder if switching to Herceptin and a taxane drug would slow the tumor spread?
I have not discussed this with my MO yet. Next appointment is November 6 for # 4 chemo. Very concerned that nothing so far has has slowed the spreading I will have a scan after my Nov appt to look for any changes. Keeping my fingers crossed for positive changes!
Everyone have blessed and a wonderfully peacful day
Lorri
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Hi, Lorilyn ~ I'm so sorry about your mets dx, but glad you've found us and joined the conversation. I guess my first question is, how do you know your bc isn't under control? Have you had a scan since the one that found your mets? And if so, did your onc switch your treatment regimen at that time? I'm trying to get the full picture of what you've been on since January.
I've read the study you mentioned, and I would absolutely ask your onc about it. The very fact that it's resonated with you makes me wonder if that's your intuition kicking in and telling you to pay attention.
Is your onc at the University of Utah? If not, I would strongly suggest maybe getting a second opinion there because it's an NCI-designated cancer center -- especially since that recommendation re. Herceptin is fairly new, and I an NCI-designated cancer center would have the most experience with it at this point, as well as be totally up on any other targeted therapy for your specific dx.
Hoping you get some much better news at your November appointment! (((Hugs))) Deanna
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Annie,
I had multiple spots in the bone metastatic since the beginning...I had radiation to the spine and then presto for the last 9 months no further progression...I take arimidex...From my experience and what I read having multiple expressions of bone cancer is not the big big deal if it can be stopped with the proper medication...best wishes from Carolyn from Music City
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