Bone Mets Thread
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KBL -I’ve only had a CT and bone scan once but my appointments were not conveniently nested. I drank my barium and then had my CT at 11:45. Then got my injection. My bone scan was at 4. The facility where I had it done was a zoo and booked solid. These were the only times they could slide me in.
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To those of you who had the CT and bone scans back to back: Am I understanding that you got an IV right away and then they used it for both the bone scan shot material and the contrast for the CT? I only had this done once before (at the time of my original diagnosis in fall of 2018) and the scans were at separate times on separate days. I got a small shot between my wrist and elbow on the inside of my arm for the bone scan. I think I had the CT while I was in the ER and they just used the ER IV line to add the contrast for the CT.
I'm getting back to back bone scan and CT now in the middle of February and I assumed I would get a shot like I did before, and then later the IV for the contrast. I just want to be prepared for what to expect, as I am a big needle phobe and always prepare ahead of time with Lidocaine cream (as used with a chemo port). Ever since I used the lidocaine for my chemo port, I've continued to use it for everything involving needles - IV's, shots, boosters - used for Covid vax too. It makes such a huge difference for me.
From what everyone is indicating here I should probably do the lidocaine preparation with the idea that I will be getting an IV put in on arrival, and then the bone scan material will be injected into the IV. It won't be a simple shot like I had before. I need to have the lidocaine on about an hour before they do the IV, and I had been planning on getting a simple shot when I first got there, then I was going to go apply the lidocaine in anticipation of the IV for the CT. Looks like I should show with the lidocaine already "ready" if I get an IV first.
(Sorry for the long drawn out explanation for something as simple as a needle stick, but I am such a big baby about these, that I would love to hear what your back to back experiences have been. Thanks for indulging me!)
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I have been on Xgeva since 2016. Initially monthly. After 3 years I went to 3 monthly and then last year 6 monthly. My Onc say that there are definite risks beyond 5 years with atypical femur fracture.
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Kbl, that schedule could certainly happen if your scans are in different places/companies. I don't drink the liquid contrast any more but I used to have to arrive an hour early to drink it. I still got the IV contrast, too, but now it's just the IV.
Eleanora, your scan day sounds very much like mine. I take my knitting and my Kindle to keep myself occupied during the waiting period.
Threetree, that was my experience – IV line in for the nuclear med/bone scan injection, then the same line was used for the CT contrast. The CT tech removed the IV line as soon as they injected the contrast. You're not a baby at all! Needles are never fun and anytime we can minimize the number of times we get stuck, we want to do it.
I was having therapeutic phlebotomy sessions a while back for polycythemia. The second time, the nurse asked if I wanted lidocaine before the bigger needle went in. She said she always offers that for phlebotomy sessions. It helped a lot. It never hurts to ask.
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threetree, yes, like sunshine said, the same iv is used for both the bone scan injection and the ct contrast. At the hospital I go to for scans, I first go to nuclear medicine where I get an iv, and the tracer for the bone scan is injected into it. They tell me what time to come back for the scan, usually 1 1/2 hours later. Then I walk down the hall and take an elevator to the imaging/radiology department for the ct scan. I wait my turn, usually no longer than 20 minutes. The same iv is used for the contrast. Then it's taken out and I can go get coffee and eat and kill some time before the bone scan. The time goes quickly.
For a number of years, I was able to schedule scans in the morning and get a zometa infusion in the afternoon along with an appt with my oncologist, all at the same hospital. So I would ask for the the iv to stay in after the ct scan and it was used for the zometa. I liked getting everything done in one day. I drive an hour to the hospital so I just made a day of it, visiting my son afterwards because he lives in that area. And the onc was often able to pull the scans up on her computer in the afternoon and give me a general idea of what they showed, even tho it wasn't official until the radiologist wrote up the reports. It was very accommodating of the staff to schedule it all like that. Then the new cancer center went in and my onc retired and things changed, but I appreciated it while it lasted.
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Sunshine99 - Really appreciate your info. Only other time I had this done, they injected the tracer directly into my arm. CT was not being done in conjunction. Thanks for not thinking of me as a baby. I'm surprised at how many medical personnel have never heard of the lidocaine and some of them sort of freak out when I peel off the Tegaderm I cover it with right before the needle. One told me she did know what I was talking about because all the kids at the children's hospital walk around with it all over them. (Made me feel like a baby again of course.) Wow, you had to go through phlebotomy sessions - that must have been no picnic. Glad you got some Lidocaine too!
Divine - Good info, thanks so much. If I wasn't reading on here, I would have just gone and expected to get the tracer injection via regular hypodermic needle; wouldn't have been "Lidocaine prepared" for the IV. It is nice to be able to get all that stuff done in one place and at one time. I'm only about 15 minutes from where I have to go, so that's been a big help through all of this. Yes, I too sometimes spend hours at a time there, and often just hang out at their coffee shop or take a walk around the campus while I wait for whatever I'm doing next. It used to be I could grab some coffee and then go over to the Proton Radiation Center there and sit in the lobby. It was real cozy and comfy chairs with a big gas fireplace going. It was especially nice in the early morning hours of the winter. That's where I spent a good deal of my time waiting for the tracer to take effect, that only other time I did this. Covid seems to have put the damper on non-patients sitting in that area now though.
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RK2020, thank you. If I have to have this done again, I will definitely schedule them differently. I feel better now.
Hope all goes well for anyone having testing.
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yes threetree. Always back to back as Sunshine described. I go to small local hospital about 15 min from house. Everytime I go it seems they adjust my schedule making it more convenient. I hope I'll never have to go I to the big city hospital.
I hope it isn't long and you become accustomed to needles. I hardly even notice them. 3 pokes a month plus 1 for scans.
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GailMary - Good info - thanks so much. I sure know what you mean about preferring the smaller hospital, and one that is close. I actually live in a large city and the place I go used to be a nice neighborhood hospital in a residential area here of the city. Now the large local university with a medical school, etc., has taken it over. Going there still beats going to one of the big downtown hospitals or the university's main hospital center, but it's losing some of it's old nice neighborhood feel. The university seems to be making it "bigger and more corporate like" even though it's a state university, so I think non-profit.
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Sunshine
Nice to meet a fellow knitter! I had a small project with me for my scans yesterday. Knitting is as close as I will ever get to meditation and it has kept me company in many a lonely hour when my mind starts veering toward the negative. I am fortunate that the hospital where I am treated has a lovely, large lounge (sorry for the alliteration) reserved exclusively for cancer patients with a fireplace, sofas, chairs and cubbies with desks for those who bring their laptops. It is a quiet, peaceful place to wait (and knit).
Eleanora
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My other piece of advice is to make sure you empty your bladder before you go into the bone scan room. The scan can take a while and if you've been drinking a lot of water, like they tell you to after the CT scan, you're going to be pretty uncomfortable on the during the bone scan. The scan itself doesn't hurt, it just goes REALLY slow! The techs usually ask me if I've emptied my bladder before we go into the scan room.
I try not (OK, who am I kidding?) to look at the monitor as I'm coming out of the scanner. I see all kinds of things that look serious. Is that white area bigger than last time? Are there more white areas? Why are they being so nice to me? Why do they need "just a few more views'?
Carol
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Great advice, Sunshine. I haven’t had a bone scan since 2016, so I remember some of it but not all. I will make sure I pee before.
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Oh my gosh, sunshine, I have the exact same thoughts as you about the scanner monitors! And I always try to read into how the techs are treating me: are they acting like the scan shows something suspicious? Are they jovial because things are stable? Like I am trying to see if I have clairvoyant capabilities, lol!
I go to a big city hospital because my small town doctor referred me there—even tho our small town has a cancer center. When I need the small town hospital for other things, I like being in my own community; it's simpler in every way. Yet I feel the big city hospital has given me years after the mbc diagnosis that I might not have gotten if I'd doctored locally. I've been a regular to big city hospital for so long, I've gotten to know some of the staff who are very caring. Big or little, each hospital has it's pluses and minuses.
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Divine you must have heard me on Tuesday. After I left the bone scan room and was almost to the exit door at the end of the long hall, the technician came running after me and said that he needed to take "a few more views". I peppered him with questions but of course got no answers. As I was leaving the room a second time, I again tried unsuccessfully to get an explanation and finally dissolved into tears. A young woman in scrubs came over and asked if I needed a hug and when I nodded she held me and patted my back for a few minutes. I am so grateful for her kindness.
Eleanora
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I have scans today. They moved up my check in half an hour. I'm hoping that moves everything up but I'll have to wait and see.
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Hope all goes well!
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Looks to me like there's nothing new and the original met seems to be responding to ibrance and Letrozole. I haven't talked to the doctor, but for sure there was nothing new..
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Well that's definitely something to be happy about. Good for you!
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That’s good news Wren44. I’ll mark that down as a win
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Wrenn44, great news.
So I went for my CT and bone scan. Drank the barium at 8. The trip took an hour and 25 minutes. Got in, paid the copay, got sent upstairs to two other people sitting there. That wasn't a good sign. The machine broke down. No CT scan. On top of that, the staff were rude.
I went to the bone scan. Totally different atmosphere. Nice people, trying to help me also get my CT done today. Nope. Cancer center said can't be done today.
Won’t ever have scans at that office again. One machine and no backup.
I had the bone scan. As I suspected, it shows none of my cancer. I wont be having one again. They're a waste. I do have my CT scan rescheduled with them before my next onc visit next Friday.
What a PITA.
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Oh, kbl, I'm so sorry! I wish you had had a better experience. I just don't get rude office people. It's not like you're there for an oil change. I. HAVE. CANCER!!! Sheesh!
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Oh KBL $%#*+@&! And you couldn't find out about the broken machine BEFORE you drank the barium? Ugh. Bad timing. Bone scans are worthless for me. Won't ever get one again. I hope you get your CT rescheduled SOON. Do you remember reading about my PET scan machine issue? I laid on that hard bed for 2 hours before they told me it wasn't going to happen. I got injected with radioactive glucose for nothing. My issue was an unstable electricity grid after a hurricane. The power went out and the generator couldn't restart the scanner. 🤦
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Thank you, Sunshine and rk2020.
Wow, that’s awful. rk2020. I can’t even imagine laying there for two hours. That’s just ridiculous.
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rk2020 - What a terrible and unfortunate experience for sure!
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sounds like rotten luck. I hope you enjoyed the car ride. And good results eventually
I wonder what is different about machines that you get barium. I know once I thought they added a little Crystal Lught to the "contrast". Now it's straight water. It's "enough contrast".
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gailmary, when my husband drives me, not so much. We are on a highway with a lot of big rigs. I hate being the passenger. I drove myself yesterday. Much better. I don’t know why that is. I’m not a good passenger. Lol.
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kbl, that's interesting, because I'd much rather be the passenger than the driver. DH drives me everywhere. I only drove when I took him home after his colonoscopy.
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Sunshine, I think it’s because I’m a control freak when I’m driving. I drove myself all over when I was self-employed and drove to the big city every day for 12 years. I, of course, am the better driver. Hahaha.
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Reporting back on my MO visit i.e. Xgeva use.
She suggested that I continue using Xgeva. She quoted from ESMO and ASCO guidelines that say "indefinite use in MBC patients is recommended". I need to research that and read it for myself. And that Xgeva is not stored in the bone like Zometa. She said she has told patients that use Zometa to take a treatment holiday if they are stable, but with Xgeva to continue its use.
I was using it every 6 months--- getting scans every 3 months so getting Xgeva every other visit. I want to go to every 4 month scanning now, so she said that we could give the Xgeva every 4 months while I am there for my scans and MO office visit and not have to come in for a separate visit just for the shot--- I travel 2 hours one way for my visits. I may do that. Have to decide.
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candy678 - Thanks for sharing your doctor’s thoughts. I take Zometa so I’m glad you even included her thoughts on that. My March treatment will make 3 years of quarterly infusions. I’m still on the fence as to what to do.
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