Ibrance (Palbociclib)
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I'm told no teeth cleaning. My ANC gets pretty low.
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I have been taking Ibrance for about 5 months now. I am experiencing hair thinning drastically. Will it ever slow down?
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I guess I’m the odd one as far as teeth cleaning. My MO didn’t seem concerned when I said my dentist asked for me to come every 4 months instead ofevery 6 months. Dentist said meds can effect our oral health & she likes to stay up on anything that may develop. Also, I sometimes need 2 weeks off and can’t really predict my off week for scheduling. I go at various times of Ibrance cycle.
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Candy, sounds like you had good scan results. I'll wait for it to be official but an early congrats.
Rabbit, praying that you don't need to move on.
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Rosie24, I don't think you're the odd one. I use to work for a periodontist. We use to recommend this often. Not just for cancer patients, but for people that are at risk for gum disease, diabetics, etc. What many people don't realize is that if you get gum disease or infection in your gums, this can cause many health problems. So I think is a great idea. Nothing wrong with preventing and staying healthy every way we can. But I would check with your MO as well. We often would call patient's doctor to confirm it if they were in the middle of chemo or treatment, especially since we cleaned below the gum line. Hope this helps. Best wishes!
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I believe if my counts would not be consistently low my onc would not have said no to cleanings. It may be that I am the odd one. Aren't most metastatic patients in the "middle" of chemo or treatment now?
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Candy - I just asked my MO this question two weeks ago as I had a cleaning coming up last week. He said as long as no major work needed (which we would have to plan for) then its fine regardless of point in cycle. My dentist is aware as I had to have a check before they could start me on Xgeva - there is a note in my record and he still sees me every six months just to ensure everything is looking A-ok. I DID notice that the hygenist this last time was a bit more gentle than in the past so either my electric toothbrush is doing the trick or she backed off a bit
I alternate the dentist check and cleaning so someone has a look at my teeth every 3-4 months rather than every 6.Radgast - let's hope its a good chat with the MO coming up.
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Lucky4Life — to quote cure-ious, “ Damn!" FYI I know I've read that some women have had long responses with fulvestarant as a second line — especially when they had a long duration response to Letrozole. As Cure-ious points out there is now Piqray to combine with it if you have the right mutation. Please keep us posted!!!
Candy — it sounds to me like good news. I'm SO happy. :-)
IntoLight — I can't stop dancing!
Katen1227 — my hair thinning stopped and mostly reversed after about a year.
Rabbit— sending prayers and much love.
Hugs,
Penny
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Good morning ladies, I got woken up by my MOs nurse again, all my scans are being bumped up, MO wants everything done prior to seeing her. It took a lot of gymnastics to make both CT Scan and Bone Scan happen before the 20th....so now I’m having bone scan on the 14th and CT on the 18th. All this frenzy makes me think those markers were really bad and she’s very concerned.... just have to keep telling myself to remember to breathe. I thought to myself how crazy this is this morning, too fast...
Thank you ladies for the prayers/thoughts.
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Morning all.
Rabbit- In my prayers for the increased TM's and MO wanting scans ASAP. Breathe.
Sondra- Scans soon?? I was thinking next day or so.
I will ask MO about teeth cleanings next week and get dentist scheduled. HATE going to dentist. Bad gag reflex. But 2 years is too long--need to get it done. But not every 3-4 months (Sondra), yuck.
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Thanks Karen. I do pretty much follow what my medical and dental pros recommend. I was referred to a periodontist for a receding gum area before my dx but that is now on hold. And yes, my hair is thinning, a lot more recently than when I first started Ibrance. Maybe it comes and goes. I have enough to cover my receding hairline but I sure hope it stops. I wonder if vitamin levels are involved for me because I currently have high calcium and lowish D according to labs last month. I’ve increased my intake of D and MO is looking into the calcium issue, probable bone scan coming up for one thing.
Rabbit, Thinking about you and sending best wishes that your scans show nothing to worry about. Maybe your TMs aren’t telling the real story?
Candy, I hope the responses on teeth cleaning were helpful. There are a lot of different approaches mentioned! And again, your report sounds very good!
Lucky, I think we all want to be like you! 😊
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I have my teeth cleaned every six months. I was never told not to. In my last meeting with my former MO (#2), she said it would be best to do that on week off. That's after two years saying nothing and previous MO (#1) saying nothing for three years. The problem with not taking care of your teeth is you can end up with something more serous like a root canal. Then the risk of ONJ comes up. If you are one of the bone meds, skipping cleanings and exams is a risk I'm not willing to take.
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Candy, I'm in tomorrow late, after work. Feeling confident based on Frankenboob's current sad deflated balloon appearance but armpit node feels like its hangin tough. Don't get too excited though, I've got to wait two weeks for MO appointment and no patient portals here. Actually Im sitting by the hospital right now getting a late lunch after seeing the physio about 15 mins walk away. Can't get away from the place.
I didn't go to the dentist for 20 years and only found my current guy when I finally got my first cavity two years ago. I adore my dentist though, he's just too cute and is very sweet and gentle.
Radgast, at least she is being thorough and will have all the data points in advance of the discussion so you can make appropriate decisions together. Even if it's bad news I would much rather a proactive response upfront than a guesstimate and more time wasted to scan and another appt after.
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Hi.
I recently had my teeth cleaned on day 4 of Ibrance cycle, the same day of my monthly labs. I also had a routine full jaw Xray to check for any potential problems. (DDS said healthy.)
Later I found that my ANC was 0.72 and no one was expecting that result. It is usually around 2.0+ the first week starting back on Ibrance.
So far, no problems with any signs of gum infection. Watching for signs.
(My labs have been drawn typically between day 24 and day 4 of Ibrance cycle these past 3 1/2 years. Availability of MO and my schedule drive the appt date. She wants labs drawn the same day of appt. Still think the nasty virus I had on my week off harmed the ANC recovery..just a hopeful guess ).
To those with upcoming scans due to concerns that tx is no longer working, you will be in my thoughts. We each live with so much worry and stress but hopefully, we eventually find ways to cope and just live our lives.
S
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hi Rabbit! Sorry to hear about added stress for you. Hope and pray it's just your onco being thorough and your scans are fine. Is there something you really enjoy you can do to distract yourself for a while? Will be praying for you.
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Jaycee- Good point about not going to dentist can cause more harm-- not treating something early. So true. I will make appt in next couple of months. If my insurance will agree to it---see my rant on the My Love, My Life Thread ( Mel's living room).
Sondra- Pocket duty tomorrow for scans. And a cute dentist would help !!!!!!
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Rabbit...prayers for you. Please keep us posted.
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I looked at my blood test results again and I don't get ANC done often. Maybe because my WBC is usually around 3.0?
Also, I haven't been to the dentist either first because they wouldn't treat me without a note and secondly because there always seemed something else that took priority. I plan on going soon though.
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Rabbit hope all goes well.
Jaycee49....you are funny always do as I am told
Also I ditto everything Jaycee said...bloodwork/dentist cleaning every 6 mo.0 -
Thank you ladies! Will keep you in the loop meanwhile trying to not freakout too bad! MIL will be coming thursday afternoon for distraction and girl time and will stay over to take me to my bone scan the next day and distract again during the isotope settling part of it. It will be so hard not to move to try to peek at that screen that shows the scan in progress on the left beside the machine. At least I get more time before I've got to drink those delightful "smoothies" for the CT - I chose 2 flavors, that's my secret, chose two flavors and drink them cold
In your pocket for scans tomorrow Sondra!
Oh do you know the muffin man, the muffin man, the muffin man, oh do you know the muffin man that lives on Ibrance lane!!
Still taking my Ibrance as I haven't been instructed to stop yet, I figure it will produce about a bakers dozen out of me by tomorrow
Take care ladies!!
Edited to add, putting a post it note on my fridge of other ladies waiting for scans like candy has. I have candy waiting for confirmation of stable on 17th, Sondra tomorrow, BevJen before 25th, need to check with Nicole when hers is, I think soon. Anyone I'm missing or don't have down right
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Miss Rabbit...I love your sense of humor. Never lose it!
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Curious - thank you for the info. I was in a clinical trial for over four years. Everything was tracked by cycle number.
Jaycee49 - WOW, you give me hope! Thanks for the info
Kareng1227 - I've been on I/L for over six years and my hair still thins. At first it was really heavy, not like when you have IV chem, and started around my face. It has slowly worked across my scalp. I did find that when my scalp was tender/burned more hair would fall out in that area. After a year hair came back slowly in the same order it came out.
Penny78 - My ONCO did mention Fulvestarant. I'll see what he says Thurs.
Rosie - thank you
Rabbit - hang in there. In my prayers.
Prayers for all with upcoming scans!
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To Rabbit and all those going for scans....just remember the crew here are praying for you daily.
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What's this beverage you ladies get to drink? I'm waiting for my turn, been encannulated (yeah I made that word up) and drank the water provided. I hate cannulas, that whole hanging out of the vein thing creeps me out.
On the plus side the hospital is super quiet tonight which makes for a nice change.
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Sondra- What type of scan are you getting? CT? I have CT's of chest, abdomen, and pelvis. They give me the oral contrast kind of like lemonade. Yellow, see through, and tastes like lemonade. Supposed to drink 1 liter in 1 hour. I drink as I wait in the waiting room. When they take me back for the scan, then they start the IV cannula and give the IV contrast that feels like you peed your pants.
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Rabbit -- Has anyone brought up the idea of a possible tumor flare as you are responding to treatment?
Hugs,
Penny
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Candy - CT with contrast of chest/abdomen/pelvis. I just had to drink a small glass or two of plain water and they run a saline flush through first and with the next breathe and hold they run the contrast dye. Hell I didn't even need to get into a gown, just had to whip down my jeans and paper covering over the top. Unfortunately the cannula tech did not pass my paperwork over to the scan techs so I got stuck waiting an extra 45 minutes - until the scan tech gal realized I had been sitting there and clearly others had gone before me. Now I know the system! (first time for CT at THIS hospital), so next time Ill yell.
CT scanners dont do the cool wubwubwub like MRIs, but I get amused by the Spinning Wheel of Imaging when it speeds up. Like it could literally slice you into bits rather than just take imaging slices. Or you could shoot through another dimension.
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SondraF— I had CT scan for abdominal/ chest/ pelvis last Friday that sounds like your description— drink 2 glasses of water right before CT (32 oz) Scan, hold breath... breath. Have contract run thru port. Scan, hold breath.... breath. Done. 4 mins tops. Longest wait was while they checked images before taking me back to my room.
I have another CT scheduled for next week. Orders are to drink 32 oz water right before arriving at the scan center.
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RadagastRabbit, I'm sorry your tumor markers are going the wrong way - I can't begin to imagine how you must feel - you are so young, and you've been through so much in such a short time. I hope your scans bring a pleasant surprise. I'll be thinking about you and hoping for good news.
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Ladies, does anyone else get a PET/CT scan? I don't drink anything--just fast 6 hours prior and no carbohydrates 24 hours before. Been doing this for 3 1/2 years every 3 months. I do get a radioactive infusion, (takes a few seconds) wait 45 minutes, scan takes 20 minutes, then I'm done. My MO said it is best to compare same scan types although she does say when I show progression she might do a bone scan. I hate drinking stuff so I am fine with this one although since it makes me radioactive, I avoid my granddaughter for 6 hours. The variety of scans always interests me.
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