Bone Mets Thread
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This looks amazing - would be great for those of us with hard to find veins.
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Hello ladies, new to this thread, tried the bone ca link and didn't get it! Been having rib pain on the lumpectomy side for several months, when i reach or strain. Also sensitive to touch. MO had a rib series done several months ago, nothing. Went to my Rad onc yesterday to see if it cud be rads assoc. Finished rads 2 years ago! He repeated rib X-ray , won't get those results tip Wed. I'm going to request a CT or MRI and bone scan , even if its neg. BC at the age of 32, after a 6 bear fight. No one seems worried about this , except me!
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Kiwi Cat, Love your take on stress as a possible ca cell event and how you put your reaction to it to diffuse the stress. I like to micromanage also and with my Dx of MBC last Nov frustration took front stage. In a strange way as I let go of "responsibilities" (imagined or otherwise) I felt free to do "my thing" .I'll remember your buses for sure. Hugs, Peg
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hi bonnet,
Welcome to the thread. Do you know for sure if you have bone mets? I was not sure what you meant by "bone ca link", so can't really give you any further info. If you haven't been dx with bone mets yet, you might want to check out this thread
https://community.breastcancer.org/forum/8/topic/7...
I hope you don't have bone mets, but if that turns out to be the case, there are lots of reasons for hope.
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Bonnets, I finished my radiation 7 years ago and have had significant tenderness to touch in the ribs on the surgery side...."where tumor area was radiated.. Interestingly my tumor recurrence this year is on the other side. Many MRIs etc have not shown any issues with ribs on the original side. Oncs have attributed the soreness to that original radiation. My original radiation was a focused IMRT.. Sparing of the underlying heart was the intent but other area tissue was probably caught. After 7 years it has not gotten worse and the site tenderness is "normal"to me. Hope that this helps..sorry that you are going through it all. Peg
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I have been on Femera for almost 15 months. I too have the back, knee, hands and shoulder pain. Right now it is controlled by Ibuprofen and muscle relaxers and the occasional Tramadol. I have been NED since July 2013. I had a bone scan in September this year and my bone Mets have not come back. Kiwi I am going to start using your stress reliever mentality, because while being NED is a good thing it is also so mentally stressful to me. I worry with every ache and pain and any unusual thing happening in my body. I've been having frequent headaches and serious brain farts that I automatically associate with bc. I keep forgetting that I'm am old (58) almost (59). I Love coming here and reading the post. Y'all are all wonderful people with great insight. Thanks for allowing me to ramble on. I Love You All!!
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macyhen,
We are not old! I am 58 too and like to think of myself as complex and aged like a fine red wine. Still, my mo has reminded me that some of my aches and pains are probably age/arthritis related. That's fine with me, as I hope to keep getting older!
Caryn
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Thanks to all of you for your kind comments about my picture. I gained 15 pounds in the last 3 months. I have to figure out how to get that off. I know my diet changed for the worse when I moved in with mom. I know I stopped exercising in the summer after I found out about the mets. Then there came the anastrazole. I think it increased my appetite. I was effectively animal-protein free before I moved in with mom, and I didn't eat candy. That's a lot easier when you are in your own house and in control of what comes into your house. Oh well. I'm going to work harder at losing the weight. I just learned yesterday that it was 15 pounds that I gained, so I think I might have the motivation I need now.
Good luck to you Romansmom. I don't think I got your name exactly right but I think I got the gist of it. I'm crossing my fingers and toes and saying prayers for you.
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I am reading alot of BC survivors..what about those that have moved into STAGE IV Bone METS...is there success Stories about those who went on to live pass the given statistics....living in fear...since April 1st 2014.... Carla
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Carla,
It is very hard to predict how long anyone with stage IV bc will live. The stats are aggregate figures but as individuals, things may be far different. Expecting to be cured at stage IV is a bit of a pipe dream, since that only happens about 1-2% of the time, and why it happens is not clear. A stage IV dx is a lot to deal with, but, when you're ready, let go of the fear. Don't let fear rob you of enjoying each day, whether you only have 20 days or 20 years. I've just begun my 4th year with mets and my life is fairly normal. I have no idea how long it will last, but I try to enjoy each day, and when I do have a bad day, I let myself feel it and then move on. Thinking of you.
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Carla,
You can find stories of stage IV survivors on mbcn.org. I'm just over 5 years out with bone mets from the start. We are always in treatment. I do know of some who have survived even more than 15 years and one who survived 30 years. Statistics are just that. Some are below the curve and some above the curve. I think the new treatments the medical community comes out with are providing us longer lives.
Terri
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Happy November all! We finally got some rain in SoCal and our power was out for 16 hours. Rain wimps, we are! Anyway, I agree about stress being a driver. Too much to go into, but right before my recurrence, my real estate business was over the top stressful for me. I've closed up shop and I'm not looking back. My stress is under control and that allows me to enjoy my family so much more. I say no to almost everything. No school volunteering, no neighborhood meetings, no, no, no!!! It helps immensely!
I did a little reading on animal protein and breast cancer yesterday. I read something about the IGF1 pathway and it is starting to make some sense. Enough sense that breakfast was organic tofu tacos and kale juice! I know, doesn't sound great, but really, it was good!
Back to Xeloda. I really need to find out why she didn't want to go that route. Did I hear no hair loss? That would be a nice bonus too.....my 10 yr old gets sad when he thinks about me being bald again. He told me was going to keep his Halloween wig for me in case I need it later.
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romansmama,
Yes, we got that much needed rain here in Northern CA as well. Happily it let up by the evening so we had fun taking my granddaughter trick or treating. She was an adorable ladybug. I agree with eliminating unneeded stress from our lives, I just don't know how to eliminate the unavoidable things like family deaths, financial stresses, etc. These things would cause anyone stress. As for work, although it can be stressful, it's also one of the most rewarding things in my life, so I know it's worth doing. I think I will be truly sad when I can't work.
Your son sounds so sweet. Hope you all had a fun Halloween .
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Macyhen - I hear you. I've been having headaches and brain farts too and it always freaks me out a bit. And being NED is scary in that every pain makes me think "is it back?" But as I have said before, I stop myself and ask if I am ok right now, and then remind myself that I work in Wellington and could be hit by a bus.
Worrying about it is not going to change the outcome. I can worry all I want, but the outcome will be what it is. Of course, that all sounds great on paper. And that's how I feel most of the time. But the fear does come in waves from time to time. These boards help a lot - seeing that my side effects are "normal" for Femara, etc, helps a lot. As do the positive people here (like Caryn and Chrissy) and the longer-term survivors. Hugs to all,
Terre0 -
Macyhen and Caryn - saw this on another thread. Too good not to share!
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Hello to everyone,
Terre, loved the picture of your cats! Thanks for posting that, I am a big cat lover and I've always had one. My girls have been begging me to get another but Chloe is a handful! She's a little bugger. I wish I could post a picture of her but don't know how to do it, technologically challenged. I post mainly from my tablet and just learning how to do things.
Romansma I like what you wrote about saying no, no, no! That has been one of my biggest problems, wanting to be there to help everyone else at the risk of neglecting my own needs. I'm starting to be a little more selfish and you know what I'm ok with that! And my family is ok with it too, they encourage it.
Caryn just wanted to add that your posts inspire me and you are very uplifting! I hope I can get to where you are, you seem to have it figured out. This is all still new to me and I'm still trying to cope with this new diagnosis. But when I read what you write it gives me a better perspective on things, thank you!
Good night to all, we had our first snow flurries here today. I'm not ready for snow!
Hugs, Annie
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Annie,
No guarantees but I think it's quite possible to find happiness even at stage IV. It takes time and the worry never totally goes away (carefree can be achieved in minutes or hours and sometimes days. But as Mrs. M says, bc is always there, just below the surface) . You just get to a point where you realize you can't change the past and the future will come and bring what it will regardless of whether you're anxious and fretful or not. Many of us, myself included, have had counseling and take anti-depressants or ant-anxiety meds. I have no problem giving credit to Effexor! Take good care of yourself.
Caryn
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Well said, Caryn.
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HAHAHAHAHA Terre, that's a good one. I am Crispy!! Love It.
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Good Evening Gals/Gentlemen: Hey I was thinking...how many of you changed your eating habits since being told you have Stage IV METS to the bones? I know I had to change a few things due to having to have a Colostomy ....but for you that have METS to the bones what changes have some of you done...and is it helping/working and healthier......I eat veggies/fruits/chix/fish/but I have a sugar tooth...not alot but frequently I have urges and i like to full fill that with chocolate/cookies/ice cream...that is about it I don't put extra sugar in anything...I don't have regular sugar (granulated) in the house. Just want to do everything possible to stay healthy...Thanks Carla
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Hello Carla-when I was diagnosed stage IV right from the beginning (mets to spine and ribs) I went drastic! Since March I have been following a vegan diet with no refined sugar AT ALL. I feel really good and was told I was NED less than 6 months in. I am hoping this lasts a long time. It is was not easy at first but now I can't imagine ever going back to the way I used to eat. Renee
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Carla,
I believe I eat well but have made no drastic changes in my diet, as I have always aimed for a balanced diet. If I want a drink, I have one. If want a cookie or a hamburger, I have one. I just don't do these things everyday. I feel no compulsion in my eating habits and it's easy to travel, eat out or eat at others homes without worry. I have a single bone met,rendered necrotic by rads. I'm entering my 4th year of NED on AI's only, no chemo. Has my moderate diet contributed to my lack of progression? I will never know. But for me, not stressing about what goes in to my mouth has contributed to my overall sense of well being and happiness. Again, my diet had been very decent for years before my dx, so it was easy. There was a brief period of time after my bmx when my younger dd tried to totally ban sugar from my life (I do have a sweet tooth). We fought about it and I wanted sweets even more. Once that rigidity was abandoned, we were all happier and I wanted sweets less. In the end, you need to come up with a diet that makes you feel healthy and happy and that you can live with.
Caryn
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Renee: Mean you eat nothing with sugar...is a vegan diet have NO sugar at all....I think I'm a little unknowledgeable about "refined sugar"...My OC did tell me I could drink Vitamin D milk only...I take supplements D and Calcium Potassium...Multi...etc...So do you think staying away from all Sugar's is necessary? I know they say Cancer cells feed on sugar..is that a Myth or true??? That is going to be hard for me... almost like someone getting off addiction and I have struggled with my demons with that...20 yrs clean and sober......I'm on a very limited budget....and buying good food can be expensive...Have any suggestions or where I can fine information on this diet ....I would really appreciate it...Carla
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Carla,
Vegans eat no animal products, including eggs or dairy products. Many choose not to use or wear animal products either. Some people choose not to eat refined sugars i.e. Sugar added to foods, but may eat foods with naturally occurring sugar such as fruits. Hope this helps!
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Carla, a couple of books that have excellent explanations of the cancer-sugar connection are Anti-Cancer, A New Way Of Life, by David Servan-Schreiber, MD, PhD; and Beating Cancer With Nutrition, by Patrick Quillan (who also has a bunch of letters after his name, but I don't have the book at hand to remember them). Anyway, he at one time was the head of nutrition for Cancer Centers of America, and his book has a whole chapter detailing how sugar feeds cancer.
Personally, since being re-dx'd w/Stage IV bone mets, I have gone 95% vegan, which for me meant giving up fish, eggs, dairy, and the little bit of chicken I occasionally ate. (I'd already given up red meat.) The only animal protein I eat is a bit of cheese like feta and parmesan. I also eat a lot more organic. I don't use sugar, but I do use honey in my green tea. I'd love to give it up, but haven't gotten there yet. I also use the "original" almond milk that has some sugar in it, but am working on acquiring a taste for the less sweetened (30 calorie) version -- just because I don't think sugar is helpful to us.
Diet is such a personal thing. I don't personally think one diet is right for everyone, whether we're dealing with cancer or not. But I do think it's important to eat as clean as possible (real, fresh food -- nothing processed), and to make health-building choices. I often ask myself, what's the most nutritious thing I can eat right now, and let that guide my choices. Deanna
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LOL Deanna. I asked myself that question about 6 hours ago. The answer returned Graham crackers as a result. Oh well, some days are better than others.
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Having one of my frequent waking spells that have been part of my sleep pattern lately. I just started taking the anastrazole during the day to see if it helps.
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I had a double mastectomy and they put my port in my left arm (on the side opposite where they took out the auxilary node. I have had no problems with in it 4 1/2 years. It causes no pain and I just have to either wear short sleeves or have sleeves that I can roll up. Turns out to be an excellent placement for me.
Hugs, AJ
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dunesleeper, I started having sleep issues with anastrozole, I take mine first thing in the morning. I just finally started taking half a sleeping pill and am sleeping better for the first time in 5 years. I resisted for all my tamoxifen time but finally thought it is time to get some proper rest! 😀
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I also have sleep issues that I think are from Anastrazole. Never thought about taking it during the day. I'm going to try that too.
P.S. Stopping back to add a link to an article I just read and thought I would share: http://www.mindbodygreen.com/0-9912/6-behaviors-t...
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