Ibrance (Palbociclib)
Comments
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Sondra and DodgersGirl- Weird that CT's are done differently, depending on where you are, I guess. I cannot eat or drink 4 hours prior to test, then have to drink the "lemonade" drink on an empty stomach, yuck. And drinking 1 liter, 34 oz, in 1 hour is tough for me. I have to pee during the CT and they don't want you moving once the machine starts. I don't get into a gown either. Just pull the jeans down so they don't get in the way-----also jeans already down so rush to bathroom after the scan is done, woohoo. Hold breath, breathe, a few times then shoot dye in IV and get the "did I just pee" feeling. Another hold breath, breathe couple more times. The actual scanning maybe takes 10-15 minutes in the machine.
Sondra- I like your description of shooting thru another dimension. Hahaha. True. The whirling sound and the round tube.
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IntoLight- I have only had 2 PET scans- first one when diagnosed with MBC ( we found liver met on CT I had for another issue ) then we did workup with PET and MRI brain to see where all the mets were. And the 2nd PET 2 years later for possible progression of liver met on CT. We do CT's every 3 months, but my insurance company will only do PET if CT shows progression. I wanted a PET at 1 year anniversary to compare initial one before treatment and after 1 year of treatment, but insurance denied my request.
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IntoLight, I get PET/CT's every four months and the protocol is exactly as you describe it. I always try to schedule them early in the morning because I get cranky without food and I get awful headaches without my morning coffee.
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Intolight, I also get a pet scan every 4 months. My MO told me we'll keep doing them as long as the insurance approves them.
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IntoLight,
I have had two PET scans in the past 2 1/2 years, but my current MO says that it's difficult to get insurers to cover these tests. She sticks with CT scans.
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hello everyone( question for the hive mind!
Has anyone ever seen this on a CT scan results and if so, should I be concerned?
"LOWER CHEST: Nonspecific interlobular septal thickening at the lung bases bilaterally representing interstitial pulmonary edema."
Thanks and lovePhilly
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Love from Philly, I have not seen that note on a scan, but I haven't had many scans (yet). I love the photo you posted! You are beautiful with a wonderful smile!
Ciaci and Candy and Into the Light - great news about your scan results.
Into the Light - my oncologist told me I will have a pet scan every 3-4 months. My second one will be mid march. Your crochet amigurumi and blanket are amazing!
Sondra, hope your scans went well, I think they were today? I've been thinking of you!
R Rabbit - you have been on my mind and i am in your pocket as well! Hoping your scans go well and your oncologist has a great plan if need be.
BrennieJoyce - I was tested for the PIC3CA as well, but I was negative. The Piqray should really help you. Hope your pain is in control and you are feeling better. Keep us posted, ok?
I am seeing signs of spring around here (I live near Seattle) and just started hearing the frogs start to sing at night. It's only a few, but one of the first signs of spring and gives me hope!
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Philly - DJmammo question?
Candy - I wonder if the pre-drink has to do with liver mets presence? Actually, thinking back to when I was first diagnosed, I did generic CT first, then breast MRI. Only after those reports returned was I scheduled for nuclear bone scan, so I imagine if liver had popped on the first CT I would have gotten a more in-depth CT as well.
Aprilgirl - Daffodills are up here and the birds are tweeting again at random hours like in the summer (uh, 2 am? WHY). We have a jasmine bush out our back door and its flowering and smells really lovely.
Thanks for all the thoughts and remembrances ladies, it definitely gives a lift to know that somewhere out in the world are a group of people pulling for you and a good set of scans. For those upcoming in the next few weeks or anxiously awaiting, I hope you can find moments of peace too. We'll all be here on your side, whichever way the chips fall.
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Philly — I have never seen that. Many other odd and foreign phrases I don’t understand but never that one! Please let us know what you find out!
Hugs, Penny
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I drink oral contrast for a CT scan because I had a bad reaction to IV contrast. My preference is getting a PET every time but the insurance doesn't allow that.
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Before getting teeth cleaned do you have bloodwork done? Or does it vary with Oncologists? Thanks
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Sondra, I have liver mets but do not have to drink contrast. In fact, the liver mets are the only ones that remain noticeable on my PET scans.
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Trying to prepare a list of questions for my next visit. I was treated from diagnosis (Jan 19) with I/L, went into quick remission, but was later diagnosed with lymphoma (Nov 19). In anticipation of chemo for lymphoma was taken off ibrance to allow counts to normalize. About a month later, there is a highlighted area of concern on my L chest wall on PET. Very minimal, but something to watch. My MO says we can switch letrazole to falsodex if next PET shows any activity with this. I'm wondering where Ibrance fits back in the picture? The plan was for 6mos of chemo, then back to Ibrance. If I transition to falsodex, can I still go back on Ibrance? I don't feel like ibrance has failed me (rather that lack of ibrance and a whole lot of stress on my body may be causing activity). Thoughts? Love you gals!
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Hi Love from Philly, I think this statement on a report is one that can have broad meaning. Could represent some inflammation in the lungs or could represent disease progression into the lungs. Lots of prayers for a little inflammation! Have you had a lot of respiratory infections this cold/flu season?
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Hi lakewoman, I schedule my dental cleanings close to my first week in my cycle on ibrance. That seems to be when my counts are the best. It's better to check with your MO though.
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I’m clearly slacking as this is such a lively thread!
I have teeth cleaned every 3 months - my dentist is aware and gentle. As Jaycee says would rather avoid any issues and routine dental work has never been mentioned by my team.
Always bloods at the end of Ibrance weeks off - for me that is 2 weeks. Never during a cycle, that doesn’t make sense to me.
Thinking about you Rabbit.
Never had a PET, always CT... I think that’s a cost thing, but the CT should pick up anything significant ....as long as the people reading it know their stuff.
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TY for answers on teeth cleaning.
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Thank you KelQ for answering. I do not know the answer to your question, but I am wishing you the best of luck in finding the answers.
Penny thank you for your thoughts
SondraF what is DJmammo LOL?Aprilgirl thank you for the compliment!
I love to laugh and smile and am usually in good spirits unless I am feeling like pooooo! LOL!I will report back if I find out any interesting info.
TEETH: I had to get my MO's office approval to have cleanings and basic dental work. No issues with Ibrance. I did need to have a partially erupted wisdom tooth removed last September. I went off Ibrance for about two weeks. And I went off xygeva for about 3 months prior. We also ran my blood counts to make sure I was in good standing with my WBCs. It was a go. I suffered no bad consequences! Hope this helps. I am the daughter of a dentist, and I LOVE getting my teeth cleaned! It feels soooooooooo good! I hate fillings though!
XOXOX
Philly
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Philly - djmammo on the Not Diagnosed but Worried thread. He's a radiographer I believe and would probably be able to help decipher your terms. Perhaps message him?
Karen - I've seen a mobile type version of a PET/CT scanner in the back lot of my hospital, so they must exist for some patients in the NHS.
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KelQ, from a medical perspective, you can certainly add Ibrance to Faslodex - I see quite a few people both on this board and on the Facebook Ibrance page that switch the AI for faslodex and stay on Ibrance. This should become more common as the medical community becomes more comfortable with the idea that CDK4/6 inhibitors can still offer a benefit even after progression on a first line combo. Whether or not insurance would be OK with this probably depends on the insurance. My pharmacy only asks if I'm on some type of hormone suppressant, but doesn't seem to care which one.
Philly, I don't know the answer to your CT finding, but I'm hoping it's just a little edema from everything you've been through with your gastritis and nothing more ominous. CDK4/6 inhibitors can cause pneumonitis, but I don't know if it shows up on CT scans as edema or as something else. Hope you get answers soon and that they are reassuring.
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I have a question/poll for the hive here. I have a theory that exercise and diet (meaning, restricted calorie diet) leads to lower white cell counts and lower neutrophil counts, via a general lowering of inflammation. My lowest readings have been August 2018, September 2019 and today, corresponding to exercise bout after summer vacation (twice) and exercise bout after New Year resolution. There's some literature to support this as well, but my MO appeared more amused than convinced.
Those of you who alternate between exercise periods and sedentary periods, do you find this to be true? I've been on 100mg Ibrance for two years, and when I'm lazy my ANC runs over 2, and when I'm good it gets close to 1. The more "intensity minutes" I rack up on my Garmin in a month, the lower the counts at the end of that month.
Those of you who are good and exercise pretty much regularly, did you have to go down in Ibrance dose, and/or does your ANC run low?
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My first month of Ibrance (full strength mind) I was still mostly flat on my back and it was over Christmas. I wasn't really indulging but I also wasn't moving much. My ANC was below 1. January I was moving more, but down a dose and, lets face it, not eating THAT great and I was over 1.
I've also been consistently taking 400 mg of ibuprofen about every 12 hours over this time period, which lowers inflammation.
February now I've started to exercise (well, back in the pool for a bit), physical therapy (light squats and stretching) and walking a ton more so it will be interesting to see if the counts change.
Perhaps this is a personal chemistry/YMMV situation?
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Hi Piggy, I read somewhere that exercising at least 30 mins a day helps the immune system.
Question for the hive . My platelets were too low for me to start my next cycle. MO wants to wait a week and retest. Does anyone have any suggestions on what to eat or drink in order to improve the count?
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hi everyone!!!
greay news! The Petscan was approved after the grievance appeal!! Woohooooo! I never thought I’d be so happy to get Petscan 😭 laug
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Good news Philly. Maybe now you will get some clarification of what is really going on. Praying for no progression.
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Happy to hear it finally worked out for you. Some many frustrating stories out there, glad to hear a good one!
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Hello All. I was diagnosed Stage IV in November of 2019 and am still learning the ropes as far as available treatments, etc. I have only completed one cycle of Ibrance., The first cycle at 125 mg. was stopped in the middle because of low counts, I finished the second cycle at 100 mg, and now have been delayed a week again because of low counts. Next cycle will be 75 mg. I asked if there was anything I could do to boost the counts and was told no. I have a question I hope someone can help me with. I have been on Oxycontin 10 mg. twice a day since Nov. I have been told that I should try to stop taking it if I no longer need it for pain. I skipped my morning dose last Monday and about 6:30pm I had the worst "panic" attack which lasted until 10:30. I now believe this was withdrawal symptoms. I asked my MO and he said no, I wouldn't have withdrawal symptoms on the dose I take. I hope someone can help me with this.
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Lee - I have tapered off Lyrica and now trying to taper off Ativan. I have taken Oxycontin, but not long term. If you were taking Oxycontin every 12 hours, was it almost 24 hours that you felt withdrawal symptoms? If so, you could try Oxycontin every 18 hours for a few days to a week. You could also ask your pharmacist for help. Maybe you could get 5 mg tablets to make it easier. I kept a notebook when tapering off Lyrica since I did that over a couple of months. Once I was down to 1 small dose a day I started skipping a day out of 5 (then 4,3,...).
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From research thread (we should all test this out and report back):
11 hours ago Lumpie wrote:
Dark Chocolate Intake Acutely Enhances Neutrophil Count in Peripheral Venous Blood
Beside the well-established impact on decreasing the risk of cardiovascular diseases (1), recent attention has been paid to the relationship between cocoa-containing foods and the immune system (2), showing that dark chocolate consumption enhances the systemic defense against bacterial (3) and viral (4) infections. Hence, the current study aimed at investigating the acute effect of dark chocolate intake on peripheral blood leukocytes.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC58353...
Iran J Pathol. 2017 Summer; 12(3): 311–312.
PMCID: PMC5835384
PMID: 29531561
{Any excused for chocolate!}
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Looking for input. This evening, my dog (who is fully vaccinated and up to date) got into a fight with our new dog. As I was pulling them apart, I got bit in the calf. There are three puncture marks and they did bleed.
I'm on blood thinners but it wasn't very bloody at all. I cleaned it with saline and hydrogen peroxide and then smothered it in polysporin.
Should i head into urgent care just to be safe. Or should I wait and see if I develop a fever or if there appears to be the start ofinfection?
My counts are very strong.
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