Ibrance (Palbociclib)
Comments
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Another one for the PatGMc inspiring stories list: just met a woman in a bone mets Facebook group who was diagnosed with mets to the sternum and pleura 18 years ago!
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I like her, Lauren, and I like you! My friend who was diagnosed with 14 liver tumors and widespread bone mets got in touch yesterday. She's the one who had the recurrence while she was pregnant with a daughter who is now....(drum roll).....20 years old and a Sophomore at the University of Texas!!
Love and Longevity!
PatGMc
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Ooooo...and I like "Love and longevity"!!!
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Love hearing about all of your ‘friends,’Pat!! And I feel lucky to be counted among them! 🤗
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Mlotti. I had my y90 procedures four months after DX of MBC with mets to liver, chest and lung. My first line TX was ( and is) Ibrance and letrozole. It worked on lung and chest mets but not on liver mets. So, my MO sent me to an Interventional Radiologist.
I was able to stay on IL during the procedure. You might be able to stay on yours, too. Ask your MO about it. If she says no, you can research I R in your area and get an evaluation. It's important that your liver function numbers are good. Timing is important.
Some MO's are not well educated on y90. Hope you can get some answers.
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Mlotti, I'm chiming in on this, though I know nothing about that treatment.
Please don't ever be afraid to ask for a second opinion. It's so easy to worry that you'll "hurt" your doctor's "feelings", but good doctors won't be offended....and you need to do what's best for YOU! This is likely to particularly be true in a situation where a typical MO may not be expected to be really knowledgeable about a particular procedure. Good luck!!
--Lynn
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Hi Lauren,
Regarding the 18 year Stage iv survivor (with sternum and pleura mets), you met on FB. Could you please share the FB group and her user handle. I have recently been diagnosed similarly.
Chee
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Pet scan yesterday but no stealth results. It was a very long day as usual with a few added tasks. Medicare has two new questions that must be asked and answered at registration. Go back there? No too far from radiology when I had already walked too far from parking lot to MO office (port access) and into hospital, too. My walking has deteriorated recently so I got a nice person to call for me. Then the port issues. I got the guy who doesn't want to use mine even though it is accessed already and he just has to hook me up. (I said you are using it and he did.) They also made a new rule that the nurses who were de-accessing it over the last two years (yup, two years!) couldn't do it any more. Trip back to MO's office. I was quanked but happy it was over. Do other people use a port when doing a Pet scan (or any other scan requiring contrast, etc.)? The company who owns the Pet scan machine bus/truck (drives around southern New Mexico) has decided that using a port somehow decreases accuracy of the scan. But isn't the point to do comparisons with previous scans? Mine have all been done using my port. (Which was ok until now and I guess the nurses forgot how to de-access my port.) The whole thing was a little frustrating. I was wondering how fuming instead of being relaxed while the radioactive stuff was circulating and I was being scanned would affect the results. I also asked the tech about shivering when I was supposed to be still in the scanner. Very cold in there but that made my legs work better afterward. Trade-offs. It's all about trade-offs.
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Jaycee, so sorry you had all of the struggles with your scan. I am no help as I have no port thus no answers, but just wanted to commiserate with you!
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Me, too!! On the other hand.....you'd surely want to be absolutely sure that you're getting the most accurate results....just sayin',,,,
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I get them to use the port for my contrast CT scans and for bone scans. He has to go get an RN but they don't seem to mind. So far.
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Jaycee49, on scan day in the morning, my port is accessed at MO office and labs are drawn. The radiology folks use the accessed port for both CT contrast and bone scans. Then back in late afternoon to see MO, discuss results if available and to deaccess port.
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jaycee, I'm so sorry you had to go through all that on a day already filled with anxiety. For a long time the people who do my PET scans blew me off when I asked that they use my port. They're very nice people but they gave me some sort of rigamarole about the stuff being too thick for a port. Sometime last year they set up a nurse in a little adjoining office to do the preliminary blood work. I asked her if I could get the PET scan "stuff" (technical me!) in the port since sticking my arm calls for a line-up of people until one finally lucks up and gets a non-blowing vein. She asked if I had a Power Port which was a new term to me. She felt the bumps on mine and said, "Yep, it's a Power Port." (I had an out-of-body experience thinking about all the years of anxiety trying to get a vein! My brain yelled, "You've gotta' be kidding!" but I sat there like a good little patient.) All that to say, now she accesses my port and all is well except the thing quit working in June, then had a miraculous healing at my last August doctor visit. Go figure but Hallelujah! I can't imagine why the scan would vary according to which vein the "stuff" entered. File that under "radiology-tech rigamarole"!
I've been trying to think of a solution for your shivering. My clinic has a machine that heats personal blankets since they keep the temperature so low for the machines. I have to have two of those blankets to stay warm enough. Are you required to relax in a room for an hour before the scan? I am...no phone, no reading, no stimulation. I was thinking that if you took one of those extra large heating pads with you, you could plug it in and wrap it around one of their blankets (while you're getting unstimulated though quanked). They could then put the blanket over you right before the scan starts. (Sometimes I think I'm a certifiable genius!) (I also think I've met my October parentheses quota!)
I have to admit I had a laugh over your PET scanner traveling around. I pictured a colorful Popsicle Truck jangling through the neighborhood playing that song they all play calling out all the people for their scans. Grape, Orange or Strawberry?
Port-a-PatGMc
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I'm having a PET scan end of this month. I haven't had one done in a couple years. Last time the "quiet" room was across the hall from the nurses station. The nurses had a visitor and yucked it up the whole time I was supposed to be in the quiet room trying to dose and meditate. Also cold in there and had to ask them to turn off the lights. You would think they would have some idea about how to get a quiet room - QUIET. Got my fingers crossed this time will be better.
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Wandering, they have these at the drug store, usually at the checkout or order from Amazon:
https://www.amazon.com/Mpow-Earplugs-Aluminum-Redu...=sr_1_4?ie=UTF8&qid=1538690771&sr=8-4&keywords=ear+plugs+noise+reduction
PatG
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hi everyone! I’ve never had a PET scan. Can someone explain to me why the need to be calm for an hour beforehand? Thanks
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Thanks for the commiseration, IntoLight.
Joyner, you are the rule follower, not me, although I'd love to get you to break just a tiny one once.
Pat, I've even asked my mean-as-a-snake former MO and he said port is fine. I have the latest power-port. My ability to withstand stabbings to start IV's was ruined by a male nurse named Eric. He very painfully stabbed me about ten times the day I had my port put in. I was never the same. I swore I would never have an IV started again. And I never have. I know it will probably happen at some point.
They do have blankets in the "quiet" room and in the scanner room. They are not heated. No room for a warmer. The scanner bus/truck has three rooms. Quiet room, middle room for administration tasks (desk, computer, etc.) and the scanner room. The quiet room was FREEZING. I sat there with my teeth chattering, cold air blowing on my head. (It is very small, like a closet.) They close the door, turn off the lights and tip the chair back (I hate that). It was 40 minutes of dying for it to be over. The scanner room was warmer and by the end of the scan (25 minutes?), I knew it was too hot in there for the machine. I wonder what that does to their accuracy. And there is this electric platform that raises people up to the level of the bus/truck to enter that makes the whole bus/truck vibrate like crazy, another detriment to accuracy. While I was there, it must have gone up and down ten times. Accuracy, my @$&.
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LovefromPhilly:
https://www.appliedradiology.com/articles/ambient-...
If you don't want to read the whole thing, this is the gist of it:
"When you inject the patient with FDG, you want patients to be relaxed so they don't produce false positives in the images, which may be caused by motion, either from humming, talking or just moving about," he said, explaining that such motion can cause extra dye uptake and metabolization by the muscles, leading to false positive results."
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jaycee,
In light of my last post about motion causing false positives, maybe you've never had cancer at all...you just got jiggled too much!
PatGMc
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Wow Jaycee. I can't believe how differently the PET procedure is handled. I am so naive--I assumed it was the same everywhere written down in some manual they actually followed. (silly me!) It sounds like I use a similar scan trailer with 3 rooms, etc., but they don't turn out my light, let me read, and even provide some magazines. I always bring my e-reader and ask for a blanket which is enough. They do keep it quiet. I am more and more thankful for my insurance hospital.
On a side note, the last time I had a scan, our car battery was dead when we were finished, so we had to wait in the parking lot for auto club to come with a new battery. It was hot (about 85*) and mid-afternoon and I hadn't eaten since the night before. I was soooo hot and hungry when we finally left to find a restaurant. Thank God for my DH and PF Changs! The scan was a breeze in comparison.
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Jaycee my waiting room on Tuesday was freezing. I thought *I* was miserable but my heart goes out tfor you for what you had to endure.
Onto much better news ... I still haven’t corralled my very own “stealth radiologist” but I was able to track down my favorite nurse and she snuck me a preview of what I’ll hear next week from my MO
All good news!!!!
Thank you every one of you for your love and support. My daughter is calling me from the other room and I need to run for nowbut I wanted to let you all Know and also tel You how grateful I am.
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Penny, hooray for the good news!
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YAY, Penny!!!!!
Janet, I swear that you've been hiding in a closet in my house for the past decade or so!! Lord, I am such a rule follower. How did you know that? My husband will howl when he hears what you said! And flexibility is not a strong suit.
I want you on my team, always. You're strong and tough and ready to spit in anyone's eye. I'm an eye spitter when necessary....but I AM a rule-follower, as you so wisely noted!
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Yay, Penny!
PatG
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Janet, you can leave JoynerL's closet now
Sincerely,
Amiquanked
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Amiquanked! Love it, love it, love it!
PatG
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Penny-78 -- thanks for your reply. Power to you for handling all this with two teenagers on board!
I'm on 125 mg, Cycle 1. 0 -
Y'all are a hoot! Lol
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Penny, great news!
Pat, as someone else said, your picture is exactly what I had envisioned you look like.
Grannax, you're out there somewhere - good luck with your turn on the runway, and please share pics!
I'm so quanked that I dreamt last night that I was quanked. Zombie quank. True story.
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Jaylea,
I think we should all gather in a dark park somewhere for a Zombie Quank! I'll bring the yogurt.
And the FDG. Party down!
PatG
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