Bone Mets Thread
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deanna - love the article thanks for keeping ther knowledge up front snd available
myra yesterday were some unususal clitches try agin hang in there weekend esp beautiful temps make for a slower thread for sure. can i ansewer anything for you ? or point you to the right person.
i tried the chat when first found this site hut the chat feature was disabled. not sure if this has been fixed yet or not.
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I have the hardest time keeping up with this thread, so I was oblivious! Deanna, I had read about the Die In in Philidelphia on Jennie Grimes blog Monday morning. It made me cry. Powerful.
Carla, thinking about you. So sorry you are having a rough time.
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Hi.
I'm waving to you all. I'm ok. Just over-drugged I think. Then I got so far behind I figured I'd never get through all the posts. However, I am sitting in that lonely little room waiting for the radioactive stuff to work its way all through my body. PET scan!!!!
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Great to see your post, Dune! And thanks for letting us know about your scan in time that we can fire off our most positive thoughts to you!
Have fun in FL, Sharon!
And, Myra, yes... BCO does seem to be having a variety of weird glitches this week.
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Myra1211 Joined: Nov 2014 Posts: 149 Apr 14, 2015 08:42AM Myra1211 wrote:
welcome Bev. Sorry you are here, but happy you found us. The PET scans are somewhat freaky, but I think better than MRIs.
Terre, I woild love to see your outfits for work! They seem hysterical! How was the move? My DH and I are considering moving, but I am afraidI wont be able to handle it. This weekend we did some purging and counted change, in our change jar for 2 hours and my side still hurts.
Hope, Bruce looks really good. You are one lucky gal, Bruce for coffee and Ashton for lunch.
Sharon have fun here in the Sunshine State. The weather forecast for the next week is sun, sun, sun with a break in the clouds for sun.
Dune and Freebird would love to hear from you guys.
Have a wonderful day all....hello Deanna, Annie, linda and etal....more bloodwork from the vampire's today. I swear they cringe when they see mecoming. Myra
This is one of my lost posts, Terre, would love to hear your comments on moving and your ability to handle it. I am really vascillating as to whether I want to take it on....Myra
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Myra, that is a lot to take on. I did that about 8 months ago. It was dreadful, and I actually hired movers for the big stuff. However, letting go of stuff you don't really use can be very liberating. I had to downsize quite a lot: moving from a house to a room, well, 2 rooms. Of course, now I am accumulating again! I hope I do another purge while getting clothes out for the warm season.
I hope Patty gets a doctor who can help. I know you've been through the wringer Patty.
I see Carla was MIA for a while, too. I'm sorry you are sick and feeling so alone. I know that's a lousy feeling. Been there. Done that. Try to remember that we are your friends and family too.
Man, I want to go to sleep. I just made the decision of where we will hold our high school reunion. I'm expecting SOMEONE to find SOMETHING they can pick apart, LOL
Dune
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Welcome back, Dune! Good luck with the scan!
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Dune that's for your answer. Have alt to think about. Myra.
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Hi Patty
I had a small tumour and negative nodes in 2002. Surgery and radiation with about 10 months of Tamoxifen (couldn't tolerate the SEs) and everything seemed fine. I was followed closely, breast MRI and mammograms. In July 13, I injured my back doing double leg lifts. Massage, chiropractic, rest, physio.... it took nearly a year to heal the ligaments. In April 14 my doctor sent me for a MRI on my spine to see exactly what the problem was. The radiologist saw an hemangioma on one of the vertebra which is quite common in women in their 50s and not associated with cancer. Nevertheless he recommended that I have a nuclear scan. That showed growth spots on my pelvis, hip, rib, and skull. At first the doctor thought it might be multiply myeloma (yikes!) and I underwent a bunch of tests for that. Because bone cancer is rare in women my age I was low priority for a biopsy and it took until Sep 14 to get a diagnosis. In fact just before the biopsy procedure the surgeon told my DH and I that if he was betting man he'd bet it wasn't anything to worry about. I was actually relieved when I was diagnosed with breast cancer. Myeloma is a far less treatable cancer. Anyway my onc doesn't know why the cancer spread to so many spots but not the lymph nodes or why it went to sleep on its own or woke up now. It's just the way it is I guess.
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I'm late in sending JOY to you Deanna..thrilled for stable!!! And Patty...you can part your hair on both sides & look terrific...and in a hospital gown :-). Hope you're feeling strong! Kiwi...fun that you got a great pic of Carpe & her DH & the petite menagerie. You're all making it hard to be w/out a 4-legged furry friend. Carla...when my new onc took me off chemo (still her/perj/fem), I told him other onc said it'll come back if I go off chemo...he said, "maybe not," but I'll be stronger & there may be other options. Let's hope for new miracles for all!
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Hi all. I have a question for those of you who have experienced bone pain with your mets. I had severe bone pain when diagnosed, which has slowly but surely improved to where I feel close to my "normal" self over the last 4 months since diagnosis. I do still have some pain (not surprising as my spine, ribs and pelvis/hips are riddled with mets, with a few more spots on my femur, clavicle and scapula). However, I have noticed recently that I have a few new spots in my rib/spine area with pain. I know that before diagnosis, I had various pains in my ribs that would come and go, all areas which turned out to be mets. My question is, does this still happen when treatment is working (pain coming and going)? All evidence so far has shown that I have responded very well to treatment. However, I get worried when I feel any new pain now.
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It takes a while for the bone to heal, and - just like with a broken bone - there might be lingering discomfort. If you are like most of us, you have landed a prize set of barometer bones and will amaze family and friends with your ability to tell when it is going to rain.
The general rule of thumb is that if the pain is consistent for two weeks or more, alert your medical team. All my rib mets are healed, but they still play up if I use my upper body too much.
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JFL - I go through "normal" and flare ups. My last Feb scans showed everything is stable and yet pain comes and goes. It has been like that since my dx in Nov 2013. I agree with Blainejennifer especially if there is new pain. Do you have adequate pain meds?Dune - good to hear from you. Take it easy and rest. Really hoping you get good results of your Pet scan yesterday.
Myra - I put my house up for sale when I was dx. I panicked at the time. After 6 months, I had no offers and decided to take it off the market and stay here. Time will tell if that was a wise decision, but all I know is that I don't have the energy to move. I got rid of a lot of things though and feel lighter.
Linda
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hey everybody.
Dune. Yea. Great to see ya.
I am sitting here waiting in my pet scan. 2nd ever. First time was in 2002. Feeling : confident and healthy.
Talk to y'all later
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Thanks Linda, have been looking around at homes. They all need major updating. Plus moving. Don't think I have the energy and we have an office to move also. Not seeing it in my future right now. Myra.
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JFL, I think it's also good to remember that we had pains from time to time from various things before we had mets, and every pain now isn't going to be mets-related. A few weeks ago -- just before my CT -- I hurt a rib moving things around in one of my antique spaces. It got worse over several days, and because my most recent CA27-29 was higher than it has been, I feared that I'd broken a rib and was absolutely convinced that my CT was going to show progression. Well my CT was surprisingly stable (thank G*d), but the more interesting thing (to me) is that my rib instantly felt much better (more like I probably pulled or injured something that's healing), and I started feeling much healthier in general as soon as I found that out. Our minds are such a powerful thing! Also, as I think others have mentioned in the past, healing bones can also cause intermittent pain.
Patty, I'm thinking about you -- also sending you a boatload of powerful wellness vibes! So glad you're feeling good!
Have a great day, everyone. Deanna
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Hoping that Petscan shows stable or even better news, Patty. Wow, only the second Petscan? What kind of scans do you usually get?
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Sending you good pet scan vibes, Patty! And good results vibes, Dune!
Blainejennifer - love "barometer bones". My rib is one for sure! Great expression - definitely going to steal it. You and Linda are so right - it takes time.
Deanna - thanks for sharing that! I've had 2 bone scans because I had persistent pain. And was 100% stable. And felt better almost immediately after the scan results. I told my MO that I was possibly being neurotic. He said "A neurotic American? Never heard of such a thing!"
He is funny. He told me the pain in my upper hip (top of the pelvis in the back) was typical Femara side effect, but agreed to scan me anyway. In act, when I told him I had pain in my back/hip area, he asked me to stand up, poked me in the spot - which made me shriek a bit - and said "right there? Femara!" Apparently there are common 'pain spots' from various meds. JFL - the pain does come and go, but I'd agree with what Blainejennifer said - if it persists for more than a week or two and you haven't overdone things, talk to your oncologist. It took me several "negative" (i.e., stable) scans and over a year to stop freaking out over every new pain. It's a crap disease - most of the AIs cause bone pain and one way you know you're progressing is bone pain. So it really plays with your head. Sending good thoughts your way.
Myra - we have at least one more move ahead of us and we're praying it will be the last one. This move has certainly given me incentive to get my act together so we can buy a house. Housing prices are quite reasonable where we live. It's a long commute to work (I take the train for an hour each way), but prices are about 1/4 to 1/3 what they are in the city. And I only have a few more years of commuting left, so it's not a big deal. It does take a huge amount of energy and this move was beyond stressful with the owner of the house we were in being such a complete ass. The lease on the new place is up 01 December. So this gives us a place to be for a while so we can sort, downsize, etc.
Hooray - it's Friday (in NZ!)
Hugs to all,
Terre
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hey ladies. Have t seen dr but oer scan results posted to my chart on line. Don't see words like stable if Ned but do see words like nothing lighting up except one spot which has been in every ct and bone scan since 6-13. I see the mo next Friday. His nurse called yesterday and said they are setting me up to see gp for my hypothyroid. Should be less than 9. Mine is 55 even taking synthroid. Surely this has something to do with how exhausted I've been. Not sure it explains the other sickness but getting lined out. One step at a time.
Hope everyone is having a great day. Hootie hoo
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Patty it is so awesome that you were able to see your results already. I forgot to ask them to send me a copy, so I'm hoping the doctor will agree to make a copy for me when I see her tomorrow. I have some concerns about mine, so I'm going to pray that it won't be worse than we can handle. We're supposed to go out to dinner with a friend pretty much just after the appointment.
We had my great-nephew today, and after a day of fighting the bad transformers and then I'm not sure who we were fighting when we became teenage mutant ninja turtles. All I know is it all involved running around to the back of the house, looking for the bad guys, shooting them with our secret laser arms and fingers, beating them up a little, and then dragging them back to the front of the house to put them in the oven (jail). Whereupon the alert siren would immediately signal, and we would be off to fight the bad guys again. So, I kinda hurt. I bet that little bugger doesn't even feel the least bit sore. 3 year olds have it pretty good.
Apparently he has started this new thing where if you are wearing a v-neck shirt or blouse, he slides his hand right down through the cleavage and under the bra of the unsuspecting victim. Yes! I was victimized by a 3 year old -- who knew to feel up the real one too.
I'm going to try to fall asleep, although I don't feel like I will be successful. I just don't want to take more pain pills and be so out of it. So best of luck to you all, and I'll probably be back on later.
Charlene
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The scan sounds promising, Patty. Thank goodness they are addressing thyroid. That might make a huge difference in how you feel.
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Patty - that thryoid thing will kick your bum! Hope they get it sorted and you get some energy back. And so glad that your scan results sound positive!
Dune - hope you have good results too. Too funny about the 3 year old "wars" and copping a feel. Laughed out loud!
It's Friday here, and my goal for the weekend is finding my work clothes. They're here somewhere!
Hugs to all,
Terre
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Thanks Terre, I forgot this was an interim move. I am just worried about the exhaustion aspect. I am very conflicted. Would love to move to a more active community, but am afraid of the process would be too much. People tell me it would be good for me to get me mind of bc and see my future somewhere else. Ugh!! Can't decide. Seems to be my problem lately. Myra
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good morning all. feeling back pain from pet scan laying on table yesterday. ugh laying around being lazy
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Sorry to hear that Patty. You're not being lazy. You're feeling poorly and taking care of that. I know. I just got irritated with mom because she suddenly wants to cut grass. I can't. I need the pain pill to kick in first. So she's out there doing it. I heard the mower start. I feel bad that I was grumpy with her. I haven't told her my concerns about lung mets, so she doesn't know why I can't push myself to do it right now. At the very least the pain must go away.II have to wait for the pain to settle first. Ugh.
Now Patty, do they have any ideas what is throwing your thyroid out of whack? I hope they find and fix it soon. Like Romansma said, it will help you feel better.
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I always get shoulder pain from the scans because there is no support. Feel better Patty.
I agree on the moving part, takes too much energy. I want to sell our house because it's tooooooo much maintenance. I can't keep up, even with a housekeeper. I have no idea how my husband will do it when I can't help, or when I'm not here. Problem is, we still have 3 big dogs, and a going on 17 little dog. We need the space for them. Not to mention, kids keep coming back. I guess a solution will present itself at some point. For now, my house feels like a treadmill of never ending work! I'd be happy with a little 2 bedroom cottage with a tiny yard for a garden. I really don't want to leave all this for my husband to figure out, but I'm too overwhelmed to do anything about it.
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Well, Patty, what a shock about your thyroid function! No wonder you've been feeling so exhausted! Do you know which test came back @ 55? You know a few years ago, there was a situation where they found that a lot of Synthroid being RX'd was worthless (fake). I doubt that's happening again, but your situation made me think of it. My other thought is to wonder if you need more in-depth tests with an endocronologist, not just your GP, because 55 (not knowing what the test is, but simply in relationship to 9) sounds pretty serious -- especially if you're already on Synthroid -- and it may be more complex than just throwing more Synthroid at it. Also there are a couple more natural thyroid meds. I'm currently on NaturThroid, and WestThroid is the other one. And it sounds like your PET is going to be a good one! Fingers crossed and prayers being prayed for that! Oh, and one more thought -- maybe a bath with epsom salts for your back? I took quite a few of them, believing it helps to detox from all the radiation, as well as the muscle issues.
And I hear you all on the moving! I wish we could downsize because I think my DH would be much happier not having to worry about some of the maintenance issues that seem to be a constant thing with a 35-year old home. But after what we went through with that flood and having to put all of our stuff in storage, I'm not sure I could physically go through that again. Plus I love the improvements to our house we got with that renovation. I just want a happier, less stressed DH!
Happy Friday, everyone! I'll be checking back often, watching for news of everyone's test results. (((Hugs))) Deanna
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Good suggestions Deanna. I was prescribed iodoral by a naturopath. However, I didn't have numbers like Patty. Also I later learned that it's bad to take iodoral. I forget why. A friend nearly died with vomiting and not wanting to eat. I don't know about the big D. She does great as long as she takes a small dose of steroids.
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Me, too, Dune. I took Iodoral for several years after my original dx. I haven't heard anything about it being bad, but have simply drifted away from taking it since my re-dx just b'cuz I take a lot of supplements, and all the hormone balancing with my ND (including Iodoral, DHEA and testosterone) obviously didn't prevent my mets, so I'm not really convinced now that I ever needed it or that it didn't add to the problem. But I am curious what you heard about it being bad -- if you happen to have a link or can find that info' sometime.
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Deanna I'm reading about it and finding nothing of significance as far as dangerous side effects. I think I posted it here (but on the alternative forum). If you've ever been there you may be familiar with the anti-alternative people who come there and (probably with the best intentions) and tell us we are doing all these things wrong and seem to take some pleasant in reporting deaths of people using alternative medicine. Anyway I think that's where I got the info back in 2012. I kept taking it but stopped when it metastasized. It obviously didn't prevent the mets, despite it being touted as good for breast cancer. Maybe I should go back to that naturopath for 2 or 3 sessions now that I can afford it. He is now doing IV vitamin C, but I can't afford that. I bet it helps though.
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