Bone Mets Thread
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Good luck Annie
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HA..Kiwi...I only use my phone for bc.org (which is why shut turns into shit..sorry!)..also why I can't see the info you posted til I'm out of this :-(
Deanna...what a terrible scare! Wish you could've really enjoyed your museum time. I've never passed out but went to the gp a couple times, feeling somewhat the same. Second time (not my reg dr), I ended up in er where they ran every test (dr came to me quickly after blood test to ask if I'd had neulasta as WBC was over 30,000-yep), chest xray, Doppler, EKG, all normal (darn bc!). Onc said it was prob dehydration & if I felt it coming on again, get salt quickly. Sounds like others have sensitivity to contrast too so, I'd bounce that off onc before next scan. Hoping for good news soon!
Sending hugs & hope for a good looking xray, Annie!
Ibc...I hope you're able to do the immune therapy trial! Treading new waters!!! Something has to work! My onc keeps mentioning vaccines & sounding do hopeful!
Chrissy...France...lucky you!!!
dune...you're a busy gal...such a good thing! When you day transformers, are you talking Optimus & friends...or are you just whizzing around like one...I'd like to borrow your energy for vacuuming!
My scan is only for bone density...darn. They're still saying floating rib (haven't reached 8 weeks of pain yet!) & if it still bothers me 4/22, when I see onc, they'll assess me then. Ugh. Myra...I say femara failed me too-twice-my onc says it just needed herceptin w/it...I'm sure hoping he's right!
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Good luck with the scan, Annie. Fingers crossed they avoid surgery.
Ronnie - good luck with yours too!
Glad you're getting out and about, Dune. The iconic Kiwi toy here is the buzzy bee; so may have to make you an honorary Kiwi if you keep up the buzzing around!
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Thanks for posting those two research articles, Terre. It seems like there are so many discoveries coming down the pike -- all very promising, and some apparently pretty significant game changers. I just wish we could get all of these brilliant researchers to work together until they came up with what seems like the ever-elusive BIG breakthrough that would start to truly save lives. Sometimes as promising as they seem, these individual discoveries also seem frustratingly disconnected -- like they're still missing something big because they're so focused on one little, disparate mechanism.
Thanks for sharing your experience, RonnieKay. I'm hoping mine was dehydration, maybe exacerbated by the contrast meds, plus a dose of PTSD type fear, afraid the phone would ring (as it has for me in the past soon after a scan) with bad news.
Okay, Patty, it's now been almost 4 days since we've heard from you. Sending prayers that you're recovering, and hoping the only reason we haven't heard from you is your phone battery konked out and you don't have a charger with you.
Welcome Ismhaddock! How much have your tumor markers gone up? I think some flucutation might be within a normal range. If I was in your situation, I would personally hope my onc could uncover what's behind any confirmed rise before moving me onto another med because I would think where you're having progression (IF you are) could impact the choice of meds. And I would hate to see you switched if the increase in TMs isn't a sustained one. Just my non-medical degreed opinion.
Annie, hope your humerus has filled in A LOT! Hoping no surgery is needed!
Hugs back to you, Chrissy! I miss you here! What a great hubby you have to plan a trip like that for you! Tell him we like his style!
Hugs to everyone else! Deanna
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Hello everyone,
Just got back from the cancer centre and I was given great news! The orthopedic surgeon came in and said I was just admiring your x-ray. I was like really, why? He said your bone has completely filled in, we cannot even see the hole anymore, all that's left is a small amount of scar tissue. Told me to come back in a year and if any problems I could call him sooner. Wow I can't believe it, I'm so happy. No surgery for now!
Thanks to all of you who wished me well, it means alot!
Deanna, praying hard your phone does not ring and all is well with your scan!
Hugs to all, Annie
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Fabulous news! Keep up the good work. My
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Oh, Annie, that's wonderful news!!! Is the improvement attributed to RT and/or Femara, or have you also been on Xgeva? I should know your tx hx, but not totally sure w/out looking back through many pages, and I'm curious how you got those kind of results.
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Deanna, he said it's a combination of all the treatments, especially the rads and the pamidronate infusions. It healed quickly after the rads, 9 weeks ago the hole was still the same. I was having increased pain after the radiation and when he x-rayed it he said it hadn't gotten bigger, it was the same. I asked why it was hurting so much and he thought maybe it was the bone healing. He was right!
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thanks for the concern. I certainly didn't mean to alarm anyone. Just been so miserable. Got home from hospital sat feeling well and even most of sun. But by Sunday evening it started all over again. Dh brought me to our other hospital I town for a new set of brains to try to figure this out. I passed out on the er floor twice because I was so dehydrated. Waiting for more test - no repeats they have my records from the other hospital. Praying for a fix.
Today I got caught up on every1 from here but to miserable to respond to each. Just feeling like all you get to hear me do is complain. That's not who I am. I am generally that totally upbeat , always smiling , always encouraging or complimenting other. I am ready to get back to that. I got a lot of paying forward to do after all this for sure
Hope everyone is having their best possible day.
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That is totally unnecessary. Just happy you are ok. Do they have any answers? M
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Oh, Patty, you're not complaining! What you have sounds so totally miserable and exhausting, especially going on as long as it has. Did the first hospital ever call in the infectious disease doc? Hopefully, where you are now and the new set of eyes, as you called it, will get to the bottom of what's going on. (((Hugs))) & continued prayers for you! Deanna
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Patty, you're not complaining. We're here for you and are praying for you to get some answers. You've been dealing with this for a long time and have every right to be miserable. I would have lost it by now so I think you're handling things well considering. ((((Hugs))))
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Bummer for you being back in the hospital Patty. Just now I prayed that they will find the answers and be able to fix this problem. You must be in such misery.
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Oh Patty, almost made me cry to think you're feeling like you're complaining. Sending you hugs and love and good energy. So hoping they figure this out and get you better SOON.
Annie - WHOO HOOO!
Terre
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good morning. No I did not see the infectious disease dr at the other hospital. Ar least not the one the mo referred me to. The hospitalist said he is also a id , er trauma and some other kinda dr. Not sure I agreed with most he was saying. But since I am back in I def don't agree. Will do a lower gi test this am then a colonoscopy. Praying for some relief. You'll know I feel better because I'll be that crazy lady on the news dancing naked in the rain in the street. Corse these imperfect reconstructed boos might scare someone. I don't care. Lol
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Awe Patty, Thinking of you and hoping you find answers and relief very soon!!
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Omg, Patty! This has gone on far too long & what you've been through! There is just no excuse for this. I hope the testing gets to the bottom of things. Just don't know how to advise you at this point. My thoughts & prayers are with you. Hang in there!
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Wow, Patty -- one hospitalist who is so expert at infectious disease, ER trauma and something else that he never needs an outside consult? Impressive (said with ultimate sarcasm)! If I had been there, he sure would have gotten a piece of my mind about his inflated, generalist expertise, because it seems to me he's missed dx'g a cause and finding a lasting solution for what is making you so sick. I hope and pray this new place will do better! As SyrMom said, hang in there! (((Hugs))) Deanna
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Thinking about you, Patty. Wishing there was something I could do to help you.
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Patty-- that's not complaining, sweetie, that's righteous b****ing and you have every right! I hope new docs can find their own butts and figure out what's going on with you. It's been too much for too long now. I can't believe the arrogance of the last guy. In the meantime, we're all here for you and praying you get back to your naked-dancing-in-the-rain self ASAP! Sending you love and healing energy.
Sharon
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I'm in the middle of the group....with my mouth wide open.... LOL...see me see me....LOL...Peace Out!
Hello Ladies...Wow...I have been out of the loop for about 3 weeks...2 of those weeks I was in and out of the hospital dealing with SE from Halaven....and my hernia....finally found out why I was having shortness of breath ...now on inhaler....had nebulizer treatment in hospital for 3 days came out felt awesome...had 8 days off from treatment...go in tomorrow for treatment...counts are up ....Wahoo...been have shots to get those up....
Had a awesome Sunday...was the Grand Marshal/Poster Woman for a Motorcycle event for cancer patients/survivors...over 580 bikes attended....I was so honored...and rode for the first time since I sold my bike back in July....The wind of God was so healing for me...
I am hoping and hugging to all my sister's here...that you are well..I have read most of the posts...but if I miss one day...I feel out of the loop...and I apologize for not keeping up with you all...sometimes sitting and typing is just not on my priority list when I feel like crap...But I miss and love you all...L&R Carla
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Great picture! I am so happy that you're doing better and got to do something you love.
Caryn
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Carla! I have been worried about you! So glad you're having fun!
I got to have coffee with Carpe Diem and her husband this morning. What great people! It was so fun!!!
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Carla, that is a great picture and so happy you got to ride again! That must have felt awesome and good news that your counts are back up and they've got your breathing problem under control. So glad you checked in!
Terre, wow that is so nice that you got to meet CarpeDiem and her husband. An incredible experience for all of you and glad you had fun!
Hugs to all, Annie
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Great picture, Carla! Lucky you to have such awesome support from your friends! And sorry about the hospitalizations, but glad they renewed your strength!
Terre, I hope you and Carpe Diem got a photo. We're waiting...
Patty, hope things are looking up for you today. Keep us posted!
I've always dreaded and procrastinated about tax time, but this year it's been more of a challenge thanks to Anastrazole. I tend to organize and sort in stacks on the floor, and this week I've realized I can't take more than an hour of that at a time because everything hurts. Just a litle whine in case anyone else is going through the same thing. Looks like Anastrazole is going to be the catalyst that propels me into a more 21st century on-line approach to my record keeping.
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Deanna - can't imagine doing taxes while in pain. That's not just double pain, that's like 10,000 times pain. Good luck!
I did get some pics as did Carpe Diem, but we promised each other a preview before posting.
She and her husband are just lovely. Wish I could have spent the whole day with them! It gets a bit lonely over here in NZ, and it was so nice to see another American and someone who "gets it". Plus, she and her husband are chemists, so we had that in common as well! Had a nice cuppa on the waterfront - the fire alarm went off just as we were finishing up (false alarm), so we sat outside for a bit, then went for a bit of a walk around downtown Wellington. They have limited computer access, but I'm sure they'll be posting some photos. They have some amazing shots from Australia that I got to see!Well...I have to finish writing and costing a proposal today and then go pick up the truck to shift boxes to the new house. Not a fun way to spend Good Friday (huge holiday here - everything is pretty much closed), but worth it in the end!
Hugs to all,
Terre
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patty, my thoughts and prayers are with you and I hope you can have some answers soon.
Carla, great pic, so glad you got to ride again and what a fun day!
Annie, great news about your bones!
Kiwi, hope you got a picture with Carpe Diem, so nice that you got to meet.
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So UCLA just posted my CT results -- STABLE!!! -- and I honestly feel like I'm dreaming. I've already logged in and out of their on-line patient info 3 times, afraid I'm missing something. So now I have no idea why my TMs are up, but trust my onc will have more insight when I see her at the end of the month. An email advisement that test results had been posted came from my onc's PA with just a brief "stable" comment, so hoping she got it right.
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Deanna - stable is a beautiful word. Congrats. !!! Doing an in bed happy dance for you
Kiwi and carpe diem. / can't wait to see pics
Carla glad your back and sound better. Yes.
Still in hospital although they did a small bowel test and it wasn't emptying either so they believe from stomach to exit is running way to flow. The fix : a rx but we just gotta find the right combo of meds and the right doses
Hugs to all sorry I missed. Will be glad to be able to start taking notes again
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Congrats Deanna fabulous news. Myra.
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