Ibrance (Palbociclib)
Comments
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Hi, wondering if anyone uses a biological/holistic dentist? I need to have a filling done and am wondering if seeing a holistic dentist is a good idea. I am not really aware of how a holistic dentist may treat this vs a regular dentist. Any thoughts or opinions would be appreciated!
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I have kinda the same question. I need to have my teeth cleaned. does anyone just go to their regular dentist for cleaning
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My onc told me it was ok to have a regular cleaning when I asked last time. I just have not gone yet.
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Hi All,
Just wondering if my situation is the result of a dramatic response to Ibrance or is just normal. I have been having twice weekly drains of my right lung due to the MPE and, while there has been some reduction in volume, it has been pretty slow and somewhat erratic. My MO wanted to use my fluid as a measure of response but it seemed the irritation from the process of draining might be causing more fluid. At one point I was down to 500 mL doing the happy dance, and then it jumped back up to over 700 mL.
Well things seem to have changed drastically almost over night. Last Monday it was 350 mL and about 150 mL on Thursday. Today we had to work to get even 30 mL! I started my third round of Ibrance on June 23rd so am almost half way. Could it be the Ibrance, slight dehydration from the warm weather or ????
I have not been feeling super. Lots for coughing, some SOB and chest irritation but perhaps that is part of the process when the lung dries up? I do feel better today so maybe things are improving. Fatigue of course but that's my friend Ibrance. Won't life be fine if I can get rid of the catheter though
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wow sadieservent that's sounds very positive! Cive and chicagoan have experience with this and good results on ibrance. Was asking as I have some fluid too. Very encouraging. I hope it's a combo of dehydration and ibrance! We are close in our 3rd cycle. I hope I have similar results to you.
Singlemom, I have never heard of a holistic dentist. I have only had my teeth cleaned, I'm not sure my dentist knows a lot about cancer treatment so is be interested to hear others thoughts on it
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Sadie - there are a wide variety of responses to Ibrance over a wide time range. Certainly it takes 2-3 months to kick in ... but some people see a dramatic response after 9-15 months. I personally believe the hormone suppression works on one (faster) timeline and the ibrance on another slower timeline so you can get two drops in tumor load over time ...
Both are slower than chemo that shows results in 4-8 weeks.
Let's hope that's the anastrazole kicking and the best is yet to come.
Whatever is going on, it's good news and I wish you continued improvement for a long long time ...
>Z<
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Sometimes you just have to laugh at the way your week starts. I climbed out of bed to put on makeup (something that rarely happens lately). Got the eyebrows to line up (sort of). Mascara on the few available lashes. Lipstick. Made myself a bowl of Whole Foods oatmeal with organic blueberries (part of the Radical Remission plan). Threw down the day's first giant Calcium pill. Ironed the clothes. Plopped on the freshly washed wig. Ready to walk out the door, meet my public.
And vomited.
So I hit my knees, held "my" hair out of the way and went for it. All those organic vittles and top-of-the-line calcium....down the toilet. Then I brushed my teeth. Reapplied the lipstick. Drove in for my check-up.
A Monday in the life of an Ibrance Pioneer. (Irony - we think the calcium is causing the nausea.)
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Pat- it must be that kind of day. I poured lemonade in my coffee instead of creamer. Once I didn't realize until I used the ladies room at Taget that I used lip liner instead of my eyebrow pencil.
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Just putting in my 2 cents regarding the dentist. Ok get a cleaning from a regular dental hygienist every 4 months. Oncologist is concerned about keeping my mouth healthy to avoid complications from Zometa infusion. I told the hygienist I was now stage 4 and taking New meds. Nothing was changed and I got through it fone
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Dianarose, you made me laugh out loud!! That's the best eyebrow story yet!
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You guys keep me smiling! Rough day today for me, but this is how mine ended. Happy 4th!
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Pat and Dianarose, you both made me smile for the first time today. I finally had a decent nights sleep last night and I am so stiff and sore today, probably from not exercising. I've taken a few days off to see if the plantar facititis and calf pains get better. I wear orthotics and I'm icing my feet but they hurt all the time. How are we supposed to get stronger and have more energy if it hurts to even walk?
Pat, I think the calcium also gives me an upset stomach as do a lot of other supplements added to the Ibrance and letrozole. What to do? Should we just give up all our supplements that are supposed to help fight cancer and give us stronger bones? I'm getting very discouraged about what's ahead for us. It's all just too much.
I'm sorry to be such a downer today but I really think the letrozole is playing with my moods and also giving me so many aches and pains. I've had such good luck with the cancer on these meds but I think I might ask for a different AI, although if you compare them, most of the SE 's are similar.
Have a fun and safe 4th tomorrow.
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Faith, I had the foot and leg problems just like you. I remember the misery! My onc said I had Plantar Fasciitis but I didn't because it was gone within 2 months of stopping Femara! Because I was still in remission after big chemo, I opted not to take anything for a few years. When the bone mets showed up, I decided to try Arimidex. I've taken it with Turmeric (MegaFoods brand/Amazon & Whole Foods) for 10+ months and so far have no discomfort from it. (I also had a problem with my hand and that has not come back.) I hope you're able to switch and not have to suffer, my friend.
About the calcium, my oncologist suggested that I switch types, maybe go with a chewable or a gel if they make them. I know what supplements can do to you...I took Magnesium last year and I had nausea and vomiting for 8 months before I figured out Magnesium was the problem. I also had headaches so I thought I must have a brain tumor! I didn't so now, when I have a bad day, I stop and am thankful not to have that to deal with!
About the AIs in general, they may find one day that Ibrance (or something else) works perfectly well without them. I look forward to that big day!
Faith, don't apologize for having a down day. This will pass and you'll have better ones. I'm getting an extra week off Ibrance this cycle. For the first time, I have one number that was lower than my onc wanted to see (can't remember which). I had just told him this was my worst month and I think he read my mood and decided I needed a break. I had XGeva today so the next couple of days will be droopy but then I'll have 11 more days without our Ibrance friend. I'm ready! Here's to better days ahead for all of us!
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Intolight, that looks like a whole ball of energy there! They're cute as can be! I'm so sorry about your bad day. Here's to better days ahead!
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Faith - I am also struggling with side effects, probably mostly hormonals. Aches all over, feet are killing me. I am so done with letrozol ... but my MO is not of the creative type and to get her to change hormonals (goodness but that isn't what they used in the trial!!!) is going to be a challenge. Very interested if you choose to change ... and how it works. Need to start getting onto another hormonal ...
Another reason I haven't changed is that I went off all supplements for a bit over a month just to see what was causing what ... I have some suspicions that the supplements were interfering with sleep. I just started adding them back. I was doing a lot better on the ache and pain front previously when I was on the supplements. So if I can add the right ones back and still sleep, I could figure this out.
Finally, I have what my local urgent care doc and I believe are tapeworm eggs sacks and larvae in my stool. Sorry folks but you all have been through everything, so why not a tapeworm discussion? I suspect sushi. I love salmon sushi. I live in NM. Probably not the best place to get sushi. It's not frequently diagnosed for a reason (don't ask how I found these things) but probably more common then we think.
Whatever the cause, the local hospital lab will send out the sample to a specialty lab, but it will take a week to find out what it really is. I called my veterinarian to see if she would look at these things and tell me what was up ... but she won't. Can't wait for my next cat checkup for that discussion ...
Anyway, we're going to assume it is tapeworm and I am going to take Biltricide (human version of what they give dogs) ... the treatment is one single pill.... The medication is not available in any NM pharmacy, generally has to be ordered. I happened to find a single CVS in all of Denver that has it, and I happen to be going there this week ... and so I should be treated and worm free by friday. woof.
I put this out there because there are other reasons for fatigue than Ibrance, some of them very weird, and we do have to be vigilant about our overall health. We are not in a position to deal with several layers of illness. I am hoping that I will get rid one layer of issues once this parasite is identified and eliminated. ... and maybe be less tired.
>Z<
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Faith,
Do ask for a different AI. There are definitely differences in the side effects between Letrozole and Arimidex and even between the generic and name brand drugs. Many years ago, when I was first diagnosed I was put on an AI for three years post Tamoxifen. I started on Letrozole but after about six months I told my MO I wanted to pull the plug. The problem was my moodiness. I was turning into a complete b***ch, flying off the handle at the least thing. Itwas like having never ending PMS! LOL. They switched me to Arimidex and no more miss cranky pants. (At least, not all the time.)
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During those years at the support center we had so many women who struggled with AIs. Since they work in such a similar way, it was crazy how people could be miserable on one and do fine on another. Many just decided they would take their chances without them, especially those who dealt with clinical depression. (There are just some things that are worse than cancer.)
When I decided to stop the Femara in 2014, I told my oncologist, "This drug interferes in the quality of my life so much that it has become like no life at all. I know you think it will lengthen my life but it's just not worth it. I take all responsibility for what happens." He agreed that we wouldn't scan unless I had new pain. Yes, I ended up with bone mets but I've never been sorry for the choice. He's never said a word about the choice I made.
Z, about the sleeping....When I have these bouts of nausea, I sometimes break a Phenergan pill into 4 pieces and take one. It takes care of the nausea and makes me sleep like a baby. I usually sleep in just under 2 hour increments because my loser bladder wakes me up! I can't complain because I go back to sleep but the Phenergan makes me sleep longer at a stretch and more soundly. I wonder if that would work for you. And, hey girl, woof! No more sushi for me!
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Interesting discussion about the foot issues many of us seem to have. I am currently in a boot due to ankle issues and foot pain. Just spent $400 for new orthotics, have had issues in the past with plantar fasciitis and achillies tendinitis,. Too many years on my feet as a nurse. This pain now is different, MRI shows inflammation of the tendons and the sheath covering the tendon, joint effusion and severe osteoarthritis. I wondered if this could be caused by the Letrazole, after reading all of your posts I'm pretty sure it is. My onc offered to change the Letrazole but I'm hesitant to because my cancer has responded so well.
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My MO has me taking tums for calcium. I need the tums through out the day anyways
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Yep, I also think femara SE's are the pits. The moodiness is the worst for me, too. I was already on Cymbalta prior to this DX of MBC, so I asked my PCP if we could up the dose. She did and it has helped a lot. It helps with pain, too.
I love the eyebrow stories. Lol. At least you are making the effort and making us laugh. I usually don't even put any on! My sister did buy a new mascara for me to try. It's called Gifted by Tarte. It's made out of Amazon clay. I can't remember if it's supposed to make eyelashes look thicker or grow? But, I'm gonna give it a try.
So, we've been given lemons, now we make lemonade (coffee lemonade sounds terrible, though).
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I have to chime in on the foot pain. I thought it was just my goofy running style. (Like bees are chasing me ) but it is exactly like what you're all describing here. It's annoying and yes Faith, it does hurt to walk! Especially, when I first get up in the morning and try to walk to the bathroom! Sometimes I feel like it's a stress fracture and I panic! I never thought it could be the AI's we have to take. Sometimes, I think all of these Medicines side effects are worse than just actually fighting the darn cancer! I know we have to have the medicines but, how the heck are we supposed to excersise, like theywant us too, if we can't even walk! Ugh! My foot has been better lately, but I also have noticed, I haven't been running as much, because of extreme exhaustion, no matter how much I sleep. I could just go right back to sleep no matter what time it is, or when I woke up! Viscous circles we live. I hope everyone has a good holiday. Spend time with family !! Hugs ~M ~
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Dianarose: lemonaide in our coffee EWWWWW! Still if it was my first cup I'd drink it anyway. Need that first hit of coffee.
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Just FYI, my Medicare drug insurance would not approve Ibrance with anything but letrozole. I tried to start with another AI and I was denied payment for Ibrance. Since they pay over $10,000 a month for my Ibrance, I said, "oh, OK, I'll take letrozole."
Glad to hear someone else complain about their MO. I live in NM, too, and we don't have a lot of choices. I stick with mine because I love his nurses and support staff. At any visit, I spend five minutes with him and hours on end with the nurses. I've been going to him for three years and just don't have the energy to change.
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jaycee, I wonder if your oncologist could also write you a prescription for Arimidex and let you pay for it out of pocket. It's generic now and not very expensive. Just wondering. Or maybe you could change providers. I have medicare plus AARP/United Healthcare for prescriptions and get Arimidex with Ibrance. Nothing was ever mentioned about it being a problem.
Arimidex prices:
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Thanks, Pat. I don't want to change from letrozole. Several people said they were thinking about it and I didn't want them to be surprised if it changes their Ibrance coverage. I was on Tamoxifen right after radiation for a while but had non-stop UTIs on it (over a year). I am much happier with letrozole. My Medicare drug insurance is Humana and I know that for a while, people had a hard time dragging Ibrance coverage out of them. They've been fine with me so far.
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I have a Ct scan and bone scan on the 13th. I know people have talked about things you shouldn't eat prior too. I have never been told this by MO do I am hoping someone can tell me the do's and don't 's .
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I just wrote a long post on changing the AI and sleepand lost the whole thing, I'm so frustrated. I will write again tomorrow. Have a goodnight everyone. Mine was good until my IPad went nuts again. I want to throw it though the window right now.
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Hi everyone, I'm just about halfway through my 3rd cycle of Ibrance/letrozole combo. Overall feeling pretty good. Seem to be having a lot of the same side effects you all are experiencing...fatigue and bone/ joint pain seem to be the most annoying for sure. Starting to freak about my scans coming up. My MO is ordering a CT scan due to insurance coverage. Was just wondering what kind of scans you all have. I haven't posted much but have been reading posts regularly and admire everyone's courage here so much! Hope you all had a nice holiday weekend
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Hi Pedsnurse. I got a PET scan every 3 months and was moved to every 4 months after 1 year since I am doing well and have no new pain. I had bloodwork taken every 2 weeks at first for 6 months but now get it only once a month before I order my next cycle of pills. Sorry you are with us, but hoping you have great results.
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Hi pedsnurse, welcome! In the beginning I had a ct scan every 4 months, my onc is very cautious about radiation exposure. I have had 2 pet/ct scans, once when I was first diagnosed stage 4 and then a year later. Insurance frequently denies pet scans for many of us unless you have a "bad" ct scan. I am 27 months he's in now and have a ct scan every 6 months unless my bloodwork is off or I have new or worsening symptoms. I am ok with that because the scans bring me much anxiety.
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