Bone Mets Thread
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lately the last e to my name isn't showing up, I don't get it! It's Chelle pronounced Shelly, short for Michelle. I know,strange spelling. My dad liked to be different.
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Deanna - u know what, you got a bonus they left you off the hook for awhile now.
Linda soo nice you could have this time with your family, how special. Enjoy!
Valerie, yes from my experience, my daughter had Pet/Ct every 3 mos sounds plenty reasonable, you should have an idea if tx is working for you.
Amy how frustrating. If it's a regular radiology place I understand the ppl working there might not know you, but if it's your docs office, that sounds strange. But in any event, I always ask when we go for any scans what I have to sign to release it to my Primary and that I wanna get a copy, i know their spiel already. I believe also in having a loved one have Power of Attorney so in case you ever need someone else to speak for you, or get something if you can't the signature is there. I have that and saved my daughter plenty aggravation, she should not have to be involved in this 2nd job. It is a job, to keep all the papers. So sorry for the results, but you are on to a new treatment, so best of luck.
Imagine why don't you ask for your old report, you could verify for yourself if there was something there in the past. Radiaton, is done conservatively, they say it could weaken the area, so they only do it if something might break or it's in a dangerous place or if it really can't be treated with pain meds.
Linda - so nice to know that you feel comfortable with your doc. The fact that they tell you too much radiation, it's not my thing. It takes a real long time for radiation to affect someone, and you have immediate info to get to, so in my belief the risk is greater in not having the right modality of scan, that a bit more radiation. And the fact, that they did not scan, incompetence!
gn everyone sleep with angels!
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Good evening ladies haven't been posting but I have been reading your posts and thinking of you all. Worked for the election up here in Canada yesterday 16 hours counting ballots but now it's done. We have a new hunky prime minister . Amy that's crappy and scary but your new meds will hopefully get you to NED and pain free. Suems I'm sorry to hear about your progression I'm also taking Tamoxifin but things change and we need to change with it. Love the merry go round analogy very true. I've heard good things about Arimidex on these threads. Good luck. ChelleG yes I have been a bit lazy with typing...I want to do everyone justice and not miss anyone. All your stories are so beautiful and heart wrenching at the same time. You ladies are my rock or maybe I should say life vest .
I wish you all a peaceful pain free night .
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Wendy - so jealous. Your prime minister is so much cooler than ours here in NZ. Ours reminds me of a used car salesman..a bit smarmy around the edges.
Suems - glad your doctor decided to come to the party.
Amy - bugger @ progression. That just sucks.
Hi and hugs to all...I have to get tarted up for the banquet for the conference I'm attending. That means a shower and some eye shadow, I reckon.
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what does NED mean?
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LovesMaltes I was confused by it as well I believe it means not easily detected. Which means gone but they don't like to use the word remission for stage fours so we get NED. Works for me...
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Thank You that would work for me too!!
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NED = No evidence of disease
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yes NED= No evidence of disease
I was reading the Brain mets thread & they kept saying WBR treatment, took me a few days to figure out whole brain radiation 😀
No one answered my question Has any one gone from monthly, Xgeva, Prolia, Zometta, etc to every 3 months?thanks, Sue
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My MO was nice to call with with a quick result of my spine MRI the day before. He said the larger mets looked better but there is some concern of smaller ones looking more active. So a mixed result I guess. This is my very first scan since June when I started Ibrance and Femara. I see him Tuesday for an appt meanwhile I think he was going to get with the radiologist and try to dig deeper on what's going on.
Anyone ever get that?
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Sue,
Aredia is an older drug than xgeva etc., but a bone strengthener as well. After a year of monthly tx I did go to once every three months for a year, due to my mo's concern about se's. Currently not on any bone strengthener. Hope this helps.
Caryn
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My friends, I'm sitting in my car, having just left my primary care physician, and I'm on the way to the hospital. I had an accident in my basement about an hour ago--crashed my head into our low-hanging 3-story ladder when I turned around too fast. My skull is one of the areas my mets are engaged. They want to give me a CT scan but I simply cannot do that without being sedated. So they're going to X-ray the area now at the hospital to rule out a fracture and hopefully no harm to my brain. I'm apprehensive. I'm driving there now.
~ Valerie
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I am at the hospital can a transfusion of blood. In very anemic. Doctors say it's a combo of bone mets, radiation, femur fracture surgery and three months on a macrobiotic diet. I'm just wondering if any other ladies have dealt with severe anemia? Thanks. Rachel
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Valerie, I'm in Colorado praying for you!
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Valerie, I'm praying in California! I hope you weren't driving yourself to the hospital! Let us know what you find out as soon as you can.
Rachel, yes, I needed two transfusions for anemia while in the hospital after my hip/femur surgery. It has nothing to do with the surgery, just mostly the mets my body had been dealing with for several months. I went vegan sometime after that, so can't blame it on that either. I think you'll feel much better after the transfusion(s).
Oh, Amy, I'm so disappointed to hear that you have some progression, but I don't think it necessarily means a change in your stats. I don't recall how long you were on Femara, but our bc cells just find ways to outsmart whatever mechanism is keeping them quiet. My UCLA onc once told me when I asked how long I could expect Anastrazole to work that the average was 9 mos. I probably got 12, but stupidly dragged out staying on it for more like 18 mos. If Faslodex & Ibrance are in your future, I think you'll be very happy with the switch.
And gosh, what a huge error from the pharmacy! So glad it was something rather benign and not something that could have really hurt you. But totally inexcusable!
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Hi Deanna,
Femara from July 2013 to October 2015 so over two years...I guess that beat the odds, however my onc wanted me on it for 10 years so I expected to be on it for 10 years. First injection next week. I'm printing off the suggestions for warming, standing, injection time etc to make it less painful. Fingers crossed it works.
Amy
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oh Valerie - how annoying and worrying for you. Those accidents happen so easily. Hope the X ray shows no harm done. Thinking of you
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Valerie I hope you have someone with you so you aren't driving. The stuff we do to ourselves eh? I'm hoping that the X-rays are all good sending good vibes your way.
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So you really got a great run out of Femara, Amy. I'm sure any progression is tough to deal with, but when you're doing well on your first med, you start to believe it's going to last forever. I know having to switch meds really brought back the reality of mbc for me, snapping me out of the denial I'd been lulled into while I was doing so well. The mind game it plays with us is every bit as challenging as the physical stuff!
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Hello,
I'm scared about what the PET scan and the bone scan might reveal. Does anyone have a diagnosis of bone mets and other parts of the body? What are the symptoms you experience for the other parts of the body? My oncologist said he doesn't think that the cancer has spread to my organs or else I would be feeling really sick and not looking as good as I look. (If you were to look at me you'd think I was 100% healthy) I'm really scared even though I don't have any signs or symptoms other than my bone pain in my hip. If anyone could help to give me some reassurance or guidance, I would greatly appreciate it. Waiting for darn test results. lol
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Hi ladies,
An up and down day for me. Lots of pain for me, and I just had a pain management appointment this morning. Ugh! I've been taking the breakthrough just feel like it isn't helping too much, maybe time for a little ibuprofen. My husband is still being rather unsupportive so I'm just trying to find love and positivity where I can. Do you guys think it would be very difficult for me to drive 8.5 hours to see my sister in North Carolina? She's coming up next weekend but I wanted to go down to her one weekend and visit, and then my other sister in Florida could come up from Jacksonville and we meet in the middle at her place. I am missing my family more and more with this damn cancer, it has me in a scary place emotionally. I feel like if I had my sisters around all the time I would feel much stronger.
Amy so so sorry to hear of progression. Boo. Stay strong and I hope the new treatment will keep things from getting worse.
Ellelou- I've been hearing on boards and from others of mixed results in bone mets. I guess they really are "crazy" mets as Rnsparki described.
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Cristina--is there a train you could take?
Thanks for the comment about the bone mets. I guess I don't understand how some can look better but some look worse.
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Dear beautiful ladies, thank you for being there. They found something in the X-rays. They don't know if it's my mets or if I fractured my skull! I must have a CAT scan tomorrow. This is so frightening.
~ Valerie
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Valerie--Take care! Keep us posted.
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(((Valerie))). I don't like either of those choices! I will be praying it turns out to be neither one.
Cristina, I like Ellen's idea of maybe seeing if there's a train. Or could you take someone with you? The issue I see with driving that far alone is if you hit a wall -- figuratively speaking, of course -- and were too tired to continue on or too tired to drive back, what would you do? 8.5 hrs. is a pretty long drive when you say you've been in a lot of pain. I'm just concerned that you might get out on the road and find it too much when you're already several hours down the road.
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Valerie crap I'm crossing all my appendages for you right now.
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Valerie - Oh boy, that must have been frightening! Good think you did not wait before having this checked. Will be with you in spirit tomorrow and praying no harm done.
Ellelou - mixed results do happen. I just went through this. I hope your Onc has answers for you.
Rachel - I lost a lot of blood when I had surgery for femur and was anemic when I went out of hospital. They said they would monitor the blood and see if I needed a blood transfusion but my body healed naturally. I did eat quite a bit of red meat at that time which is unusual for me. You will feel better after the transfusion.
Cristina - that sounds like a very long ride alone. I would feel more comfortable to have somebody accompany me and share the driving. Train is a good idea.
Rushjackson - I know you are scared and probably full of anxiety and it's normal to feel that way. We've all been there and every time we wait for results, scanxiety sets in. Symptoms vary for every one, if any. Some of us use anti-anxiety drugs to help us cope when needed. It's OK to use them - do you have something to help you? If not, perhaps contacting your Onc's office for a script. And as hard as it is, try to keep busy with things you enjoy or with friends. And we are here for you. Sending you lot of hugs and calming vibes.
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LovesM, about 30 percent MBC cases changed the hormone receptors status at the point of the rediagnosis. Because most changed to e/r negative, some doctors believe that might well be due to the improper lab work. They use something to stain the cells to reveal the markers. If the staining is not done properly, the hormone receptor markers will be negative, never be the other way around. So false negative is always possible. I would think your doctor at Dana Farber will use Al treatment anyway to begin with. Another thing I hope you already know, a longer time between the initial diagnosis and the mets diagnosis is a good sign, which suggests the cancer grow rather slowly. Good luck with your treatment!
Valerie, very sorry for your accident. Hopefully everything is OK.
Amy, trust you will respond to your new treatment very well!
All, no pain and no anxiety for tonight!
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ellelou, seemed like that for me almost every time I had scans while on Palbociclib. I would get told all looked stable, then read report myself to see I had a new site of disease. When i qx'ed dr, I would get told she looked at scan w/radiologist & site has been there just not reported on. Very annoying.
Thank u Caryn for answering my qx.
Valerie, hope all turns out well
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Rachel, hoping the transfusion helps you feel much better which I'm positive it will.
Valerie, I'm so sorry you're going through this right now. My prayers are with you and sending you healing hugs.
Cristina, I think Ellelou, Deanna and Linda gave you some very good advice. I would never attempt such a long drive.
Hugs to all, Annie
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