Ibrance (Palbociclib)
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into!ight if I had it to do over again, I would never ever ever go on xgeva. The risk is too high and I will be paying the price of that decision with the pain and expense of dealing with the side effects if xgeva and the ONJ. I know two women with MBC to lung and bone who were put on Ibrance, Letrozole or examesatane and Faslodex. I have not noticed any side effects from Faslodex other than your butt checks being a little sore where the injection site is for a few days. Also, most people stand for the injections but I have it done lying down. Everyone has their own risk acceptance level but I was told ONJ only happened with prolonged use of more than five years. I got it after 15 months but thought it was a canker sore so didn't get it diagnosed until 18 months - well below the five year safe use mark. Use xgeva at your own tusk and get all dental work done before starting this awful terrible Xgeva drug.0
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Thanks Cheryl. I am petrified of the dentist (after a horrible experience as a child) and of getting ONJ. I also fear getting any type of infection after a cleaning, etc., so I tend to put it off and not go. I have been thinking of getting a cleaning before facing any change... My onc discussed looking into a treatment that would be the easiest on me. She cares about this. I am a wimp!
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I was worried and wondering about getting dental care done while being treated with Ibrance. I avoid the dentist like the plague. I haven't found a dentist yet, and don't know if I can get all the dental done before I start on the Ibrance, I have some toothaches.
Plus now I found out I have a probable basal cell carcinoma on my forehead, biopsy next month. Geez!
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Yes, Penny. On top of that he's kinda cute and only mid 50's. Should be around at least til I'm not. Nothing seems to rattle him. I'm sure he knows his demeanor is contagious to his patients so he is always very level. He has a very busy practice (mostly breast cancer) and probably seen everything. As an aside: I just went to a meeting of "Cancer Support Community". The particular group that came to our meeting is based in Bozeman, Montana. There are other chapters across the country. They are extremely supportive, have loads of information and 50 activities per month - all FREE. Wish they were not 150 miles from my home. They do have a "virtual community" on the internet.
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PatMg thank you for the pep talk and laugh!!!!! I just 💗 you!!!!
I love my MO but yes geez that he gave me a timeline!! There's a part of me that wonders if he did in a way to help express the depth of importance of the diagnosis which maybe they were worried I wouldn't wrap my head around? I'm totally speculating here but I feel like there were worried I was a flight risk to receive treatment because of my career which is in Chinese medicine?? Like that they thought maybe I would try the “alternative route" instead and so figured that if they scared me enough, I would stick around and take the drugs? Lol! This is what floats around unnecessarily in my brain.
Anywho - I know a lot of folks are having challenges or have had challenges with their partners and exes. I am single and have no kids. I feel kinda strange sometimes cause I am handling this “alone"' except it's my parents, siblings and friends who support me, rather than a partner. Sometimes it's a lonely place. But I also feel like it would be both incredibly wonderful and incredibly difficult to have a partner while going through this. So - I just joined Tinder. What the heck!
I'm so glad we have this community to share our thoughts and experiences with!
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LovefromPhilly - interesting theory.... you may be right that they were worried you'd try to tackle this with alternives only. Even still.... jeez.
My MO has never given me a timeline, acts like I will live forever, doesn't even question that. When I asked early on questions like, how long do you think I'll be able to maintain my career (he knows I have a super demanding job with international travel etc.) and he was like, well probably until you decide you want to retire? I love that he treats me that way. He is 72 and has been my onc for more than 15 years. I’m so glad that he continues to work.
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LaurenH your MO sounds FABULOUS!! I love the way he speaks with you!!!
Once my MO saw that the I/L (+lupron and xygeva) we’re working so well, and what an incredibly compliant patient I really am, he totally changed his tune and told me not to think or worry about a timeline.
It felt so good to hear but of course those first uttered words still hang around at times. I keep pushing them away because I feel so “relatively” normal that it is hard to imagine feeling worse/becoming “sick”.
Here’s to many, many more years of feeling relatively normal!
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Cheryl - just curious about the ONJ. Did you already have some dental health issues before you started on xygeva? Or was the ONJ a complete surprise?
My docs told me that it typically happens (but rarely) with people who already are working with compromised dental health.
I’m headed in for a quick wisdom tooth extraction on Monday and have laid off the xygeva since June and will not have it again until the tissue is healed.
A little nervous!!!!
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Oh, the joys of cancer treatment side effects! One day I was in the shower, eyes closed and using my hands to scrub my face. Moment of panic: I felt long thick shreds of skin coming loose and it seemed like I would soon get down to the bare muscles and tendons. I turned off the water and got out only to discover that it was just the Matte Medium I had been using on an art piece. Whew!
WTMI Alert! So last night around 2 AM, the end of an Ibrance Nausea Day, I was throwing up and noticed that there were what looked like multiple large clots of blood in the toilet. I hadn't eaten anything red (I thought) and didn't want to tell my husband because I knew he would insist that we go to the ER so I went to bed and like Scarlet O'Hara, decided to just deal with it another day. When I woke up this morning I laughingly remembered I'd had my monthly after-the-doctor-visit treat, 2 Taco Supremes with, you guessed it, TOMATOES (AKA Blood Clots)!
Have a Happy Clot-Free Friday, Y'all!
Love from PatG
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I love you, too, Patg....!
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LoveFromPhilly - no I had no dental issues whatsoever. I have always been a stickler with seeing dentist twice a year. I'm one of those weird people who likes going to the dentist and getting my teeth cleaned. I'm 62 an have two crowns (really 3 as I chipped my front tooth when I was 7) and one dental implant. I was told by the oral surgeon who diagnosed the ONJ that he has noticed a higher propensity of ONJ happening around dental implants which is where my ONJ is. I had the implant done in 2013 when I had a tooth crack and have never had any type of problem with it. I've never even had a root canal, which I'm happy about as I've heard they are painful0
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Hi all;
Here's my dental horror story. I had an inoperable tumour in my supraclavicular node and they radiated the hell out of it. I have scars to show still and this was in 2005. It seems to have done the trick however, they provided no protection for my head while blasting it and after treatment I noticed that my teeth had holes all through them. I went to the dentist and the only thing we could do was put caps on ALL of my teeth. From time to time I wonder what effect that could have had on my eyes and brain given what it did to my teeth. Oh yes, cancer treatment....so much better now with Ibrance and Letrozole.
I saw my onc yesterday and he is very happy with how things are going. He will be doing a scan in a month or so as I've had so much radiation over the years he wants to space it out. But my tumour marker is down to 12...from nearly 400 so I'm feeling confident, as he is, that this is working for me.
Cathy
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yikes about these dental stories!! I’m so sorry Seaway and Cheryl that you’ve had to go through all of that! I met a woman a couple weeks ago whose radiation treatment (from many many years ago) somehow destroyed muscle tissue in her neck and she now has to wear a neck brace all the time and/or use arms and hands to hold her head up. These are the scary possibilities!
PatG I am so glad it wasn’t blood clots. Do you think you had food poisoning? And is your nightly nausea normal? Is that from Ibrance or something else?
Love, Philly
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Pat G - LOL 😂
Seaway and Cheryl - scary stuff!
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hi friends!
Slight anxiety here cause WBCs are 2.2, neutrophils are 1.0 and platelets are low.
Having pretty simple wisdom tooth extraction on Monday.
MO says I’m okay to go, and don’t need prophylactic ABs before procedure but may need some for after.
Any thoughts or recommendations
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LovefromPhilly, dentists can prescribe antibiotics after an extraction. I would request some as a prophylactic. They usually do. Totally understand the anxiety.
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PatgMc-
I love you and your stories !!!!!! I was reading your last post and laughing so hard. I don't laugh much anymore. You are a blessing.
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thank you intolight!!! Just had a slight small moment of panic there. Thanks!!
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Love from Philly, nausea is indeed part of my Ibrance Dance for now. There are times when it's worse and then I'll go a week without throwing up. The vomiting comes on without much notice and, amazingly, I'm okay and ready to eat breakfast or lunch or whatever right away. The least fun times are when I vomit in the morning with nothing on my stomach. I really can't complain too much as I remember the sickness after Adriamyacin in 1994 before I got Zofran. Now that was some nausea!! Good luck on your dental surgery!
candy, I promise to get blood clots more often just for you! Have you ever tried Laughter Yoga? Google that and find a video. There is good evidence that laughter...even fake laughter...is a healing thing. It changes your blood chemistry. In another lifetime I did lots of public speaking and used the techniques to relax. I'm a believer.
Love from PatG
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LoveFromPhilly, have you had a tooth extracted before? If so, ignore the rest of this. ☺
After the tooth is out, part of the healing is that a small blood clot will develop in the socket. It's normal and necessary so don't swish or rinse very vigorously. When you rinse, just tilt your head this way and that for a few days to let the water gently roll around. You don't want to dislodge that from the socket. Ask your dentist for an antibiotic if he/she doesn't automatically prescribe one. (I was a dental assistant for many years in one of my earlier careers.)
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LovefromPhilly;
My daughter get laughing gas during dental procedures which she says keeps her relaxed.
Cathy
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thanks friends!!!
This oral surgeon apparently is not super big on the laughing gas but I’ll see what I can maybe beg for lol!!!
Muddling through - great tips!! That is so helpful thank you so much!! Is it okay to use listerine? I know I can also ask the oral surgeon this question but just in case I forget
I’m pretty sure I’ll be taking a Valium on Monday!!
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Seaway - Yikes! I'm sorry to hear that happened to your teeth. And I was just talking to my onc today about radiation for the tumors in the lymph nodes below my collarbone...hmmm.
I'm glad to hear your tumor marker has gone in the right direction !
LovefromPhilly -- good luck with the wisdom tooth extraction on Monday.
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Seaway -- Wow! Markers from 400 to 12! How long have you been on Ibrance?
NEWS: Just had my CT scan and there was NO progression. Markers have been falling--down to 74 from 94. Only been on Ibrance for 6 months. Hoping that the cancer will start to shrink now.
Debbie
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Debbie, Yay for the great results! Yes, it works that way sometimes. Doing a happy dance for you.
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Great news MountainLady! Super happy for you!
Good luck on Monday, LfPhilly!
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Lovefromphilly - good luck....my daughter just had wisdom teeth out and after a few days used a prescription rinse called Peridex. She also had a little Versed IV before procedure
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We sprung for Sedation Dentistry when my husband had work done on his teeth a couple of years ago. He's had an extreme fear of dentists since childhood and it was money well spent. I pray that all goes well.
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I had some withdom tooth extraction several years ago (2 on one side one day, the other 2 a few weeks later). The extraction was not really bad. What helped me a lot afterwards was to place a cooling pad on the face immediately after coming out of the dentist's house and replacing it every time it became warm. The next day, you could not see at all that I had the extraction done.
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Wow, Debbie....great news! YAY! Philly, good luck on Monday-
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