Bone Mets Thread
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Patti,
We are here for you. Let us know what we can do to help. I wish you a good QoL as well and that your breathing becomes easier.
Annie - so far so good on Xeloda. I finish my last 4 pills after dinner this evening and then have a 7 day break. I've been staying out of my hot tub so as to avoid excess heat on hands and feet. I read this could be a contributor to hand/foot syndrome so not going to risk it.
Happy New Year -
Amy
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I have recently begun having a lot of pain in both hips. Especially the right tailbone and right butt. I also have shooting pains up and down that leg and occasional tingling. My onc can't see me until the 10th. Does this sound like mets to the hip? Or more the spine, which seriously concerns me considering I have to wait so long to see the doctor?
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Patti, I'm so sorry about your lung and liver progression. As everyone has said, the decision to stop tx is such a personal one, but the strength we all hear in your post reassures me that you are doing what's right for you, as tough as it must be. I hope you have wonderful Hospice care and are able to continue being as active as you are now for a very long time.
Minxie, I don't think the pain you're describing necessarily is from bone mets, although it certainly is a possibility. It could also be med induced neuropathy, or even a slight fracture somewhere, which may or may not be due to mets. As long as the pain isn't severe and can be controlled with OTC or other pain meds, I don't think waiting until the 10th will make a significant difference in your tx or outcome. If the pain is severe and your onc can't get you in before the 10th, your other, perfectly logical option would be the ER. But I would probably call your onc's office and see if there's anyway they can get you in sooner, or order an MRI based on the new pain you're experiencing. How long has it been since you've had scans?
Babs, I'm glad you're doing well on Taxol. And I'm thrilled about your daughter's pending engagement and looking forward to more happy photos!
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Patti, i am so sorry to hear your news! Sending you cyber hugs and many prayers. You will be in my continued thoughts and prayers
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Patti- You face what we all face, and we come here for insight and inspiration into this journey, so please post it all, the good and the bad and the awful. We aren't afraid and as you know, will try to help you however we can.
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Gracie- First, what a great name you have! If it were my daughter, she knows I would just give her grief about this little fiasco, and have fun doing it-; I'd give it back to her in spades with comments like "Geez what type of person doesn't even get Xmas presents for their terminal Mom?!" and "Even with my MBC, I had time to go out and pick you up a few b'day presents" etc, etc. But in a playful way, with love. Daughters can be very hard on their Mom's, plus of course it is impossible to pick out anything that in any way seems like it would be truly special, given the circumstances. Of course it could be withdrawal, if she is trying to protect herself or worried about how to deal with your future health crisis. Or, it could just be coping. I had a dear friend die of ovarian cancer, and she had terrible grief about her 30-something husband who would withdraw from her whenever she got really sick, and just play and hang out with their five-year old son. She told me she wanted to yell at him that she would be gone soon enough, and really resented being shut out- instead it just put pressure on her to never 'act sick' around them. But after she died, now seven years ago, he still has not remarried and came by on vacation a few years ago with his son because he wanted to show him the place they spent the "happiest days of their lives". He's still grieving, and I hope she really did understand how incredibly he loved her, well I'm sure she did. Its just hard for everyone in their own way.
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patti,
I don't have much to add..but I wanted to thank you for sharing with us. Please keep us posted.
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Hello everyone. I've been reading this thread for a couple of weeks now. Recently my mother was diagnosed with stage 4 cancer after being 13 years in remission. This is causing me to become a bit unhinged, I have no idea how you ladies cope.
She has been put on chemotherapy (FEC) to try and shrink the Mets. From her bone scan report I found out she has extensive skeletal metastatis and I counted 13 focal uptakes including 2 in her skull. 2 small fissure nodules in left lung and a fibroid in the uterus aswell but those have not yet been confirmed as cancer.
Unfortunately I don't live in America and the state of care is subpar so our treatment options are limited. Doctor says he will try FEC for six sessions then radio therapy. I'm not sure if she is eligible for hormonals as she is ER- but PR+, another thing I'm finding hard to understand. However she was on tomaxifen for five years after the initial diagnosis.
Ladies I don't know what to do, is there any hope? Even five years seems like such a short time and with the limited treatment options in this country I'm not even sure we will have that. I lost my father to brain cancer when I was nine, my older brother to epilepsy when I was seventeen. Due to this our family has always been disfunctional and I'm afraid when my mother leaves I will be left with slightly more bad memories than good ones. Oh how the regrets are coming back, just like they did with the previous losses.
Anyways I apologize for the long wall of text, I thought at 24 I would deal with this better than I did before considering I'm older now, but once again I feel like that scared 9 year old.
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teejay92- I can feel your pain and frustration. What country are you in?
About the only support I can offer is that multiple lesions in bone mets is not unusual. I have mets all up and down my spine, many in the pelvic area and two skull mets. I do not have experience with lung mets.
You have been given a lot to deal with at a very young age. I know you'll be there for your mother and be advocating for the best care she can get. Keep reading here and doing all the research possible. There is lots of knowledge among the posters here.
Hugs and prayers for you and your mom.
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Thank you Kaption for your prayers. We reside in Egypt. The hospital we go to is one of the oldest in the city so I'm hoping that my mother's care will atleast be one of the best in the country.
Right now my mom is walking about and things have been relatively normal after two sessions of FEC but at the back of my mind there is always the possibility of things going downhill quickly. Add to the fact that this will be for the rest of her life, well I am truly in awe of the courage you ladies and my mother have.
Thank you for listening and I hope for all the success in your fight against this disease.
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Patti, I am very sorry to read your update. That's a heavy load to carry, especially this time of year. However, I'd just like to recognize that our own Rosevalley procured her EOL meds a year or so ago and wasn't sure she'd make it to last Christmas yet she's still around and posting. There are good days and bad in the cancer world. I hope you have many, many more good ones.
Regarding our relationships with our daughters, my sweet girl has been an absolute gem since my diagnosis. She's done and said all the right things, thanks to much support from family, friends, and paid professionals. But still... last week she told us she'd rather go live with a homeless family than stay with us one minute longer. How lovely!
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Teejay - we all get periodically unhinged dealing with this, so you are in good company. A couple of comments.
Bone mets are among the slowest moving type of metastatic cancer. People live for years and years with bone mets. I expect your mom will be around holding together your family for quite a while, although you may have to be a little more proactive to get through it with the medical system you have.
ER-PR+ is a rare subtype (1-4%). As far as I can tell, the progesterone receptor being positive may not be clinically significant in the sense that what matters is that the estrogen receptor is not there. If she really is ER-PR+ the standard hormonal treatments are theoretically not going to work. If the biopsy and the statistics are to be believed, she is effectively TNBC. That leaves you with chemo and immunotherapy as the main options.
However, and this is a HUGE however, it's hard to biopsy bone mets and there is a high rate of error in bone biopsies. Something about pulling the cells out of bone causes the hormonal status to change. I haven't had to deal with it, but you need to deploy your milennial internet skills and learn about the issues with bone biopsies and determining hormonal status from samples taken from the bone. It is possible that you will be better off with a circulating tumor cell test like biocept that doesn't try to extract the sample from the bone. I guess I am suspicious of an error because the ER-PR+ subtype is so rare. Generally, you want to treat with estrogen suppression when you can because it works and it is easy relative to chemo and because it adds a lot of options to the arsenal.
Finally there is a lot of research that shows that hormonal therapy (estrogen suppression) often does work with TNBC even though theoretically it should not work in the absence of estrogen receptors. So you might want to consider hormonal treatments (letrozol, faslodex, etc) even if you assume the pathology report is correct.
You should get a copy of Bestbird's Guide to MBC and read the parts that pertain to your mother several times. The guide provides an outline of the US Standard of Care plus alternative and complementary treatments. Cancer treatment especially at the early stage follows standard routines that are in fact accessible worldwide. In many cases there is no reason why your mother can't get access to the drugs we have here and follow our standard of care. Bestbird's guide lays out what would happen if your mother were treated here.
Cancer, of course, beats the US standard of care all the time. Frankly, after the first few rounds of treatment it becomes anyone guess what to do and you may have better resources at hand than you think. I have to go abroad for some treatment options I want to pursue. Some options are not allowed here because our system, while good, is also ridiculously restricted. The real issue can be getting the diagnostics right and we have to fight for that here.
If you are really uncomfortable with your medical care. There are cancer consultants and oncologists in the US and internationally that work by email and skype that can help you get the best care. Of course this is all out of your pocket, and managing $$'s s is a big piece of the puzzle. However if you PM me I can give you some ideas.
Once you get onto a plan and the cancer is somewhat controlled, the panic recedes and life returns to normal. However, no one here will tell you not to panic, because we have all been there. Not much to do about it but go through it.
What country are you in?
>Z<
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Zarovka thank you so much for your detailed response. We live in Egypt, the hospital we go to atm is one of the best as far as I have researched. Right now I'm hoping my mother is able to complete the remaining four of her chemotherapy treatments and that they provide good results. I will definitely pm you once I feel the care she is receiving is not adequate anymore and a second opinion may be required.
About the er- pr+, I too have read that this is very rare and alot of the times there is an error in the testing. My mother hasn't had a bone biopsy yet as the doctor thinks it may be too risky and is going off of the results provided when she was initially diagnosed and biopsied. My mother seems to agree with him, so unfortunately even though I want her to get one right now I don't think she wants to as it might be too painful for her. She is walking about with relative ease right now and I guess she is right in not wanting any more discomfort. However, she was given tamoxifen for five years after her initial diagnosis so I hope if she gets them again they will work this time aswell as she was in remission for thirteen years.
Many thanks for such a great response, I will definitely check out the guide you mentioned. Things seem so complicated now, to think just a month ago I didn't have these worries. Also I wish you the best of luck in your journey aswell.
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Teejay - If your mom can tolerate the chemo, it should control the cancer for a while while you figure this out.
The hormonal treatments are still an option for the future. Xgeva (denosumab) has become a popular treatment for bone mets regardless of hormonal status in the US and something to look into. It used to be used to treat the side effects of hormonals (weakened bones) but it turns out it kills cancer. You have a lot of options and now that your mom is on chemo you have time.
Consider editing your profile to include your mother's diagnosis and treatment history AND making it public in setting. It gives people context for your questions.
Hugs.
>Z<
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TeeJay,
I am so glad you came to this thread, but sorry for the reason you find yourself here. As you have already seen, there is great wisdom to be found here.
I want to share with you from the perspective of a fellow caregiver. My wife, KD, was diagnosed this past February as Stage 4 right out of the gate (commonly referred to as De Novo).
It took 3-4 months for "the shock" to settle down. But it DID. From your original post, I can tell you are experiencing all sorts of feelings. That is perfectly normal at this time.
I cannot tell you how many times in those first few months that I suddenly "found myself" greeting friends at my wife's funeral in my head. It was like a recurring nightmare at any point during any given day. Thankfully, these stopped as she settled into a treatment regimen and we adjusted to our "new normal" life.
I understand that you are 24 now. You are both "older", and yet still very young. There is no good age to deal with MBC with a loved one.
Please don't place any unrealistic expectations upon yourself during all of this. Treating cancer is like a chess match. The doctors make a move, then wait and see how the cancer responds. Then, the doctors make another move, and so on.
It is wonderful to see you advocating for your mother. She is a lucky woman. Keep asking questions here. You will certainly receive some wise advise.
Hugs to you and your mom,
Louis
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Thank you louis for your kind words. I can relate to those nightmares of the funeral and I'm glad that they subside after a while. I will keep following this thread as even reading the previous posts has clarified so much about the situation. Thank you and I hope your wife continues to do well with her treatment.
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You all continue to blow my mind in how you share yourselves. While I intensely dislike why we are all here, I simply adore the safety, compassion and pragmatism we all display.
Carry on.
I love you.
Patti
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Teejay - Welcome to this thread although I'm sorry for the reasons that bring you here. You certainly received some very good advice above. The only thing I may add is to consider/enquire about clinical trials in the future. Some meds are not available in Canada either and the best way to have access to them is through clinical trials. We are here for you. It's a great place for support and information. Wishing you and your Mom the very best.
Patti - we love you too!
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Teejay- so sorry you are here but welcome! You'll find everyone on this thread a wonderful source of information and support throughout your journey!
Patti- love you too
Wishing everyone a 2017 that is filled with the making of wonderful memories!!!! And hopefully stability or reaching NED!!!!
Babs
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KDs husband hit the nail on the head. I walked around in complete shock for 3-4 months. I used to look at people on the street and wonder if they were dying like I was. Today being New Years Eve, I looked at my husband and said well I guess I made it to 2017, can't help but wonder if I'll make it to 2018. Even though I'm doing well, these thoughts exist every single day. I packed up the Christmas decorations yesterday and put a note in each one telling where it goes in case I'm not here to do it. Welcome to all the newcomers, it amazes me how many of us there are, and younger people all the time. I always tell newbis that you will learn more here then any doctor can ever tell you.
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Sitting here thinking of this past year and what all of us have been through. Some pretty remarkable men and women here who have endured a lot and triumphed as well. Happy New Year to all of you and thank you for being part of my life.
"For last year's words belong to last year's language. Next year's words await another voice." T.S. Eliot
"Write it in your heart that every day is the best day in the new year no matter what we face." Ralph Waldo Emerson
"Tomorrow is the 1st blank page of a 365 page book. Remarkable." Anonymous
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Thank you, Lindalou. Those are great quotes.
This is such a safe place to come, with people who really understand how you feel and what you are experiencing. What a gift!
I tried an in person support group early in my mbc dx and found them overwhelming negative and depressing ( except for one lovely older lady). I certainly wasn't getting what Ineeded from them and they didn't seem to want to accept my attempts at more positivity. ( not that I don't get down- very down!). But, these boards provide such a wide range of experiences and wisdom. It always feels safe here- on the happy dance days and the bad news days. Thank you all for contributing. And thank you breast cancer.org for supplying these forums.
On to a healthier 2017!
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This board has been a Godsend for me...as a relative newby still, I feel so much better knowing thecaliber of women that I am in this fight with! You all have been just incredibly inclusive and gracious and loving in your responses to me throughout the time that I've been here! I am so glad that we have this board and that there are women in the world who are willing to share and open up and help all of the people that come in here that are new at this and even the ones that are have been fighting this for a long time. Thank you each and everyone of you! And here's hoping that each of us has a happy new year and that we all find remission soon!
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I was wondering if anyone with bone mets goes to a chiropractor? I have always had issues with my back so I occasionally need to be adjusted. I just wondered if it was safe with mets to the spine?
Also I don't really have bone pain it feels more like the muscles in my back are tight. Is this how bone mets causes pain or is it just something I have going on separate from it. I have had this feeling in the past too so I'm having a hard time figuring out what it is from.
Misty
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Misty, I don't think chiropractic adjustments are a good idea. Our bones are more fragile and more susceptible to fractures, and I think a chiropractor could cause some serious damage.
As for the pain, it can be different for each of us, but aching and burning are common descriptions. When I overdo it, I have deep aching, which is what I think you're describing as tightness.
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Misty, I agree with dlb . Do NOT get any adjustments. My MO won't even let me have any physical therapy. (I already have 5 compression fractures, and I don't need anymore.) She said to be very careful about massages, too. Very gentle only. No deep tissue hard core stuff.
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I saw chiropractors all my life up until my bone mets diagnosis six years ago. I will never have another adjustment-- it is not worth the risk. The only massage I get now is from a highly trained therapeutic masseuse I have seen regularly for help with lymphatic drainage ever since my BMX almost ten years ago. She is extremely gentle, uses light strokes, and does not work around my spine or hips at all.
My bone pain is a deep, persistent ache, sometimes a burning sensation. Rarely if ever is it the kind of sharp, grabbing pain that takes your breath, like a hamstring or a sciatica strain can do. It is more of a deep core pain.
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I love my chiropractor and feel he's helped me in many ways both before and after my stage 4 diagnosis.
My MO gave a cautioned okay to see my chiro again, but made me promise there would be no 'back cracking'. I saw my chiro for 2 months and he did many different types of treatments (massage, ultrasound, uv waves, heat and ice, and gentle p/t). My hip was habitually out of place so nearly every visit he maneuvered it back, but nothing I would consider a crack, more like a pop if anything.
Well, at the end of the two months with him I had my regular CT scan and found 3 compression fractures in my spine, and 2 other spots that had not fractured.
I don't know if my chiropractor is to blame because I like to blame everything on the cancer itself, however I have had my last session with him. If I had it to do over I wouldn't have seen him. With this I think I should have been better safe than sorry.
My .02
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Thanks everyone! This was what I figured would be the answer. I will continue to just do my yoga as that helps me to get my back strong and I sometimes have my hips pop during the stretched and it helps me so much. I feel amazing the next few days after doing it.
I have a bone met in my c7 and I assume it is what is causing my right shoulder area to feel like I have a pulled muscle.
I had my port put in last week and my chest is sore but it is freaking me out now because I worry about every pain I have being a met!!!
I have a new scan tomorrow as it is required for the clinical trial prior to starting treatment. I am trying to not worry about it. I have been diagnosed stage IV since 11/22 but not been on any treatment yet because of getting 2nd opinion and then also having my ovaries removed. Trial is very picky about when I can start. I worry I'm going to have lots of new mets since I haven't been on treatment yet.
Misty
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Apg, Went to my chiropractor when I first had all of the pain in my back. She examined me and checked out everything before she was going to adjust me and realized that the pain wasn't coming from needing an adjustment. She said she did not want to scare me but she didn't feel comfortable doing anything until I went to the hospital and had some x-rays. I went immediately to my doctor and had x-rays done and she was right. She was worried it was something else, and it turned out to be mets to the bone. She felt that doing any type of adjustment might do more harm if something else was wrong and she was right. I had a fractured hip and mets to the spine and pelvis as well as other mets after a bone scan the next day. So my suggestion is that you don't want any pressure on the bones so that it wouldn't cause more fractures. I don't get massage any longer either, just waiting to see if things improve. I haven't talked to my MO about this, but I'm sure that taking Xgeva along with everything else, it is better to be safe than sorry. We certainly don't need to have more pain from a fracture. Hope this helps.
Anita
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