Bone Mets Thread
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MammaRay, with an aggressive bc (not only Stage 3 but a node with extracapsular extension), I refused to do an A/I because I had a very scary reaction to Femara. Instead I went with I3C (a natural aromatese inhibitor), and hormone balancing, which means I took the hormones my ND assured me were safe for me, in spite of my local onc raising his eyebrows and shaking his head. At that point, I wasn't seeing my onc at UCLA. I was Stage II at the time, and now I'm here, although I have absolutely no idea if either of those things alone or in concert are to blame for my metastatic recurrence. But I certainly don't recommend that route to others any longer. Other than that, I did everything I was told -- mx after an lx, chemo & rads -- and hoped that was enough. Like Tracy, I am very much an integrative thinker/believer.
Tracy, great to see you back!
Dee, hooray for a clean colonoscopy!
So why did the Mods remove the petition link? Politics or personal? I'll have to see if they took down the main thread with it. I'm sure they have their reasons, but I'm disappointed to see that in view of how much we all are banking on future research breakthroughs to extend and hopefully save our lives! I have the Facebook link. PM me if you want to sign that petition and didn't get a chance. Deanna
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I consulted a ND shortly after my dx. Gave him pathology reports and all. When I received the products he was recommending, I looked up the ingredients and it contained 80% organic soy extract. I refused to take it while stressing again that I will not take anything with phytoestrogens. He gave me a second potion that contained 20% organic soy extract explaining something about the molecules (that I did not understand as much as I tried) and that it was OK to take it. I didn't feel comfortable and ran this by my pharmacist who is very open to alternative meds and was told it would interfere with my tx.Linda
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It's so easy to believe what we want to hear. My ND is wonderful, but I may have made the mistake of equating her education (which coincidentally includes an undergrad degree from UCLA) with the expertise of UCLA's breast cancer experts, and I think she (my ND) probably underestimated the aggressiveness of my bc. But this is also where I subscribe to the crapshoot theory. Not that a bc dx or metastatic recurrence is entirely a crapshoot, but just that there's just no way of knowing for sure which factor(s) made a difference. I might also argue that my ND's plan delayed my recurrence which was simply programmed into my DNA. Who knows?
And yes, soy is so controversial. UCLA teaches that soy protein isolate is the one to absolutely avoid. But like you Linda, I would absolutely be concerned that supplements high in any type of soy extract may not be wise with an ER+ dx!
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I agree with Deanna, in that bc is not entirely a crapshoot. The problem is that no one is quite sure of what (a very big, global WHAT) triggers the start of it, progression etc., so we are equally unsure of what may hold it at bay, or better yet, prevent it. I have had a very easy time with stage IV (as easy as things can be at stage IV) and oddly, my bc was only grade 1, so go figure. I would never, ever claim that anything I have done or not done has helped me me do so well. I simply don't know. I have always had a moderately healthy lifestyle and didn't change much after my dx. I learned about my disease but didn't fret much or obsess over diet, possible cures or experience guilt over a cookie or a gin and tonic. Does this mean I have any answers? Nope, I just try to be happy and do my best.
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Hello to our lurkers who have come forward. My brain is a sieve and I've already forgotten your names. It's dangerous to go back and look when you're using an android device. I know that one of you is soooooo young. What a horrible thing to happen to someone so young.
PattyPepper I hope your migraine is better. It's always got to be something. Right?
Tracy your trip sounds wonderful. I propose we all join you next year in St. Maarten!
Terre, you described the dogs so well I almost saw them. You are a hoot!
A weird thing happened to me today. I think I broke something in the area of my left sacro iliac joint. I was just standing folding towels. So I got down on my knees and leaned on my bed until I could catch my breath. This was just before we left for the CT scan, so I got the doctor to order xrays. I'm now walking with a cane and am rather bummed out. What causes the fractures: the AI or the Xgeva?
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Hi, everyone. Popping in to say I've been following along - I check in every day and I read every post, though I don't always have anything to say.
About the petition to get Komen to devote more money to research - the mods took it down everywhere but in the original spot, the Advocacy Topic. You can find it if you hit the tab for Active Topics. I signed it and added it to my Facebook page.
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OMG Dune, it's always something! Do you have mets on the sacro iliac joint? Did the xray show a fracture? I don't think AI's or Xgeva would cause fractures as Xgeva counteracts the AI's weakening effect on bones. But I'm no medical expert.I bought myself a beautiful fancy multi-colored cane - I figured if I have to use it - might as well do it with class (lol).
Linda
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LOL Linda. I guess I will find out tomorrow what the results were. I know there were mets to the right iliac and the sacrum but this is on the left side. I like your thinking on the cane. Mine is boring and was given to me back in 2008-2009 when I had my knee surgery.
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This evening I had a dizzy spell while putting my socks away. It was like something was forcing me backwards from the dresser, while my eyes played tricks on me, making everything look wavy. I got down on the floor and called for my mother. I didn't try to get up until she got in here. That was weird. Not the best day. Nope, not the best way. It reminds me that a medical emergency could happen at any moment. Meanwhile I keep procrastinating about certain things that need to be done. I procrastinated myself into this. I should have been doing weight bearing exercise, but I stopped when I got the stage iv diagnosis. I kept saying it was too cold to walk around the block. Any excuse would do. Now I have to walk with a cane. That will make the walk more difficult. Of course, I won't do anything until we find out what happened and if there is a way to get it to heal. Thanks for listening to me. None of my friends seem to understand that these things that are happening to me: the jaw, the sudden sacro iliac pain, and now the dizziness are really quite concerning. I must admit, they have hurt my feelings today. None of them really responded to the news of what happened. They don't even seem to believe that I could have fractured a bone while standing, doing no more that a little twist, as I folded towels and put them away. I sure am glad I was right by my bed.
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Dunesleeper, so sorry you're having such a rough time. First with your jaw, then the sacro iliac pain and now the dizziness. I totally understand where you're coming from when you say your friends don't understand. I had a friend tell someone I was making a big deal out of nothing when I got my stage IV diagnosis. Ignorance is bliss! Try to not let it bother you although I know it must hurt. I was devastated when I heard that my friend said that about me but then I thought to myself she's not a true friend. And same as your friends she always thinks I'm exaggerating when I talk about my pain. So now if I see her I just tell her what she wants to hear. Did you get any answers to your jaw pain? I was at the dentist today and talked to him about my fear of ONJ. So far everything looks good. Off to see the radiologist tomorrow for follow up. I hope your dizziness has subsided and you can get a good night's sleep. Thinking of you, Annie
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Dear caitedidruns, I have the luck of living near a wonderful radiologist who has decided to give up her practice as a radiologist. Dr Tiger was the face patients saw when they came for the mammos, US, biopsies. She was the face they saw when they were told they had cancer. She was the face they saw when they came back for repeat scans after treatmemt. In her words, I was completely lost as to how to help these women heal. She wanted to be the one to help them find healing of body and spirit.
She is now teaching yoga therapy and integrative yoga therapy. I am going to meet with her for a private session in the near future. Lucky for me she is located in the So Jersey area. She has written a Foreword for the book "Yoga for Cancer" written by Tari Prinster with another Foreward by Cyndi Lee, founder of Om Yoga . Dr. Tiger's therapeutic practice integrates traditional Western medicine with the Eastern science of yoga. Ultimately, her vision is the inclusion of therapeutic yoga for cancer as part of every patient's treatment plan, giving each patient the opportunity to take an active role in his or her journey to healing. You can purchase the book on amazon. I have just started reading the book. I am an experienced yogini who has had to make numerous modifications in my practice due to these darn bone mets all over my sleketon.
i will let you know how my session goes while I'm searching for my bliss. Namaste.
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BTW, I have been taking Xgeva injections 120 mg subcutaneously every 4 weeks and the results have been very good. My pain is minimal (just another bothersome s/e of bone mets) and I am moving like an "old" gazelle". Only problem is the night of the injection when I experience severe bone pain all over not controlled with NSAIDS that's when I call my ONC very bad names. The next day I feel fine and like my ONC once again. So I'm fickle, he gets over it.
Dunesleeper, hope your scans went well today. I have ordered panoramic MRI with contrast for TMJ and also osteoradionecrosis from rads to the head/face/mandible in the past for my patients. That may be a diagnostic choice if your scans did not reveal the cause of your intense jaw/mandible pain. Hope you are feeling better. May the dizziness be banished.
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vegasnurse hello I had met to T4 spine in 2012 treated w Cyberknife n 4 rounds chemo
Still have pain at and around site scans good. After reading your post I don't feel like a crazy person still in pain
The met was just beginning to invade my spinal cord so was very lucky to have found the bastard!! But he has left me with a nagging knife in the back feeling
Anyone else have issues from treatment for bone mets?
Thanks
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Annie you are so sweet. I can't seem to get to sleep. So mother nature called a few times. No problems with balance then. I still have the pain. However I am hoping I get the results, especially xray, today.
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Oh, Dune, I hope the dizziness was just from all the stress you've been under lately, first worrying about your jaw and your onc frustrations, and now on top of that worried about possibly having broken a bone. It sounds incredibly stressful just thinking about what you've been dealing with in the past week. And as far as your "friends" go -- well, Stage IV bc, especially if it's bone mets only and someone isn't on chemo, is just a hard thing for most people to understand, since we may not look particularly ill. They just don't get it -- nor do some of them want to. They just want us to be okay. I'm so sorry they've disappointed you today. Hopefully some of them -- your true friends -- will check in with you soon, and the others just aren't worth thinking about.
Hope you can sleep well and feel much better tomorrow. What's going on with your sacro iliac joint? Did you get that x-ray'd today?
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Dune, I too broke a bone in my hip, JUST BY COUGHING,that's how I found out I had mets. Been going to a great psychotherapist who has tried to help me to see some people will never understand what we are going through, good luck with the scans and I will keep you in my thoughts today.
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hey Myra. Have you been treated for the break? Is this cane thing permanent? How are you feeling these days?
And dlb I do understand, at least a little. I don't even understand what's happening to me. How can they possibly?
I came down for a cuppa. A couple more swallows and I return to bed. Have a good day everyone.
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yes they treated with 15 sessions of rad tx and now mostly no more cane. Just have to take I t slowly. And yes a jazzy cand does help
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Things are looking worse. The xrays showed mets to my left sacrum and ilium and that's why the pain. This is a lot of growth. Radiation starts Monday. Tonight I have to get mri of brain. Pray that I have strength.
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Oh, Dune, I'm so sorry. Was Arimidex your first A/I? Hopefully a switch to another one will be just what you need, and it seems like the other two (Aromasin and Femara) now have "companion" drugs that amp up their effectiveness.
And darn about the brain MRI! Praying for strength for you and absolutely NO further mets. I know it's so scary and disheartening that they even want to check that. What time is your MRI so that we can all be rooting for you and sending you calming vibes?
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6:30 Eastern. Thank you. About 2 hours.
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Good luck, Dune, so sorry to hear that things have worsened for you. Is this your first AI? As I understand it & from reading DLB's post, there are many more things they can try. ((Hugs)) Dee
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Dune - Crap. I am so sorry. I pray and know you will have the strength. I will be in spirit with you at 6:30.Big hugs - Linda
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my best always and today Dune.
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dune,
So sorry to hear your news. I know you will find the strength to deal with it. Somehow, we always do and if need a strength boost, we are always here.
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Keeping you in my thoughts Dune. I'm sorry to hear about your progression. Like dlb said, hopefully a switch will do the trick
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Dune, thinking of you and praying for your MRI to be clear! Sorry to hear about the progression but hoping the rads put those mets to sleep! Sending positive energy and healing hugs your way.
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Question:...What are the 2 names of the tumor markers that OC's track while having Stage IV Bone Mets/Liver...Please tell me...I'm sorry I was blind sided today with numbers...I need to know what each of them mean...ASAP...I am going crazy right now...sorry...explain after someone tells me them...and what each of your numbers are...
Thank you
Carla
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dune. sorry to hear about your progression. Hang in there. We love ya.
So I am in the hospital again as of yesterday. Uncontrollable vomiting and the big d. Major dehydrated.
I too lazy to post to everyone but I read all your post and wanted to give some hugs to all who need them.
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You take a hug back from us Patty. I'm sorry you're feeling so bad to be in hospital. It crossed my mind today but I can't imagine what other pain meds are available. I cozy up next to yo if they would relieve the pain. I'm grateful as possible that you are all here to share your experiences and hope.
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