Ibrance (Palbociclib)
Comments
-
Welcome Liz - I have to say I was really thrilled to see you at 9 years MBC and large and in charge in corp life!
I was dx'd de novo at 42, around the same time as aprilgirl and frankly I just never stopped working - I didn't know what else to do! And that was with a sacral issue that left me flat on my back or with walking aids for four months until Covid started. In a way the whole pandemic has been a bit of a godsend in normalizing WFH. I go into the office maybe once a month to have lunch with friends but really prefer not to because the cost and time it takes now is just a waste.
Ibrance is very doable if you are still working full time. I work a full day (lot of thinking work, some presentations, some zoom calls but not many if I can help it) and its usually not a problem, though sometimes I need to take an hour or so to recline about 4pm (I just have it blocked every day as "data" as my situation is not known at work) which is enough to get me back up and at em through the rest of the evening. I was also put down to 100 after a month at 125, and my counts tend to run a little low at .8 by the end of the month, but I feel well and onc isn't worried. That being said, I am having a "dragging ass" afternoon today, though I think that is from the Xgeva shot yesterday for bone strengthening.
No neupogen shots, just an extra week of recovery if needed. The first cycle you will have to do mid-cycle bloods to check on levels but after that its just monthly bloods. Keep on top of hand washing and social distancing if needed - I had one (suspected) sinus infection since dx, and there is suspicion that was potentially covid. I just took an extra week and recovered fine.
0 -
Aprilgirl 1 -
You're spot on! I'm also getting a PET now upcoming and also a bone met biopsy for that very reason. Tamoxifen also gave me a super rare uterine sarcoma in 2013, and she wants to make sure IT hasn't spread. She's really thorough, and I love her!
"edited to add: Has your oncologist ordered a biopsy on the new met? When I was dx with stage IV my oncologist did have my biopsy checked for PIK3CA as it would indicate that Ibrance/faslodex might not work for long or something like that? At that time, I did not have that mutation. If/when I have a progression she will try to get a new biopsy - I realize not all mets can get a good biopsy sample but it's something to think about."
0 -
SondraF -
Wow - thanks so much for this. I'm already feeling like I can keep on keeping on with this new drug regimen from hearing the encouraging experiences. Yesterday was sort of like hearing I was terminal for the first time all over again, and then all the new treatments and stuff just really scared the crap out of me.
I also block time and lay down for an hour while WFH if I need to (which I usually do). They are starting to have us come back into the office in a very limited way too - which is ok to get out of the house occasionally.
LL0 -
Aprilgirl, yes, CT and bone scans starting bright and early Friday morning! The scheduler said, "Oh, all we have is a super early start time", and I always respond, "the earlier the better!" Like to get that show going asap.
Welcome to others new to Ibrance, I'm still fairly new myself, on cycle 6 now. I do still work my full time schedule, but yes, am still working from home. I work for a medical center and they have made it clear that anyone who can work from home will continue to do so for the foreseeable future. San Francisco isn't messing around!
I've learned that my WBC and ANC will just never be in a "normal" range on this med, and while I had to drop down to 75mg right away, I've been able to sustain adequate labs to keep taking it (fingers crossed for Friday). I do have less energy overall, but am still able to do most everything I used to do. I can't dance around the house listening to 80s music as long as I used to, for example. I've put on about 20 pounds in the past year, which my oncologist is happy about - she does not want me losing weight. So I ordered bigger pants.
Also, and our dear Rabbit will back me up on this (back me up, tee hee), I have become quite gaseous. I have expressed toots that my neighbor heard (I was in the yard, to be fair). It mostly makes me laugh like crazy, which I'm grateful for. Very very best to everyone here! Toot toot!
0 -
Cakes - I find that scan times are like taking a plane - an earlier flight time means less chance for a schedule to go awry due to thunderstorm or late incoming plane or mechanical issues. Same with scanning as you never know if there is an emergency case or equipment breakdown that throws the whole days plan into a mess and you are then waiting an extra hour and a half if you have a late appt. Besides, its so quiet first thing in the morning!
Work were planning a trial starting in October of having people come back in aiming for an average of 3 days a week. I told my line manager flat out no way. Its a hot desk situation and given the cases and deaths are up again in the UK and this is BEFORE schools start in a few weeks, yeah, Im not going to start going back into the office for no reason. That and the train companies have raised fares and I sure as hell didn't get a raise this year. Hoping the 20 somethings will carry the team average load!
0 -
Well, that didn’t take long. Had a PET scan on Saturday and I have a slight progression. I’ve only been on Ibrance and Faslodex for 6 months. Saw my MO today and he’s putting me on Afinitor and exemestane for my next line of treatment.
Hope all of you continue to do well on Ibrance and keep on dancing.
0 -
RosieRed, I'm sorry to hear this - you and I started on Ibrance right around the same time. Can I ask, is it progression from initial mets? Or new places/mets? I only ask because I've heard different things about when to switch treatments, and also hope you are okay. Thinking of you ❤
0 -
SF-Cakes - the currentPET scan showed higher SUV rates in places that we knew where the cancer was. But also they saw changes in my right lung and liver compared to my initial PET scan done back in January/February.
0 -
RosieRed, thank you for sharing that, and I really really hope the afinitor combo works well for you. Also hope you are doing okay, these scan results are so freaking hard when something new shows up.
0 -
RosieRed, sorry to hear about you needing to change treatment. WIshing you all the best on A/E - may it shrink the cancer to nothing and be easy to tolerate. Keep us posted on how you are doing, ok?
SF-Cakes - in your pocket for scans tomorrow! I like my scan appts early, too. Mainly because I dislike having to fast past noon. I Between the "metal free" petscan outfit I have to put together and the fasting, I just like to get in to the cancer center and get that over with! I do like to pick my music for scans.
0 -
Aprilgirl, music for scans? How has this not been a thing offered to me for my bone scan?! It's always very, very quiet in the bone scan room...I am going to ask them about that tomorrow. If they would play some Billy Idol, I would not be nervous at all! 😂
I ordered Louise Penny's latest book in her fantastic Chief Inspector Gamache series, that is my present to myself, will start reading it after I get home from scans. Good to have something wonderful to look forward to.
0 -
SF-Cakes, have you read any of the Lady Hardcastle books? I love them! I just downloaded the most recent one and am trying to "savor" it rather then rush through to see "who done it". The author is T. E.Kinsley. I highly recommend them!
0 -
Hi ladies. I'm a bit of out of sorts today so this won't be like my usual posts.
Thinking of Cakes for scans tomorrow, thinking of Rosiered on her new line of treatment, thinking of candy as she seemly is walking on hot coals with all she's dealing with, thinking of Jackie and hoping she's okay, missing Jaycee and her honest words of wisdom.
Welcome to the newbies in the thread! I'd like to back up Cakes with one of my famous gastrointestinal gaseous adventures, but today is kinda sour. One of my original dx chemo sisters on here who became stage 4 a year after I did just had significant progression 2 days shy of her 1 yr MBC anniversary after achieving nead on 1st line a couple weeks ago. It's hit me hard, just like the day she told me she was joining the club. Just feels like a pit in my stomach.
In other news, my BP is dropping. For the past 2 MO appts it keeps dropping. It was 116/64 in July and 116/61 at my MO appt a couple weeks ago. My BP is normally 120's over 80-84, however it did run low during IV chemo, particularly on Taxol. If the bottom number goes much lower will be a problem. MO asked me if I had/am seeing primary as she listened to my lungs and checked for edema in my calves and ankles ( none yet). I said doc you know me, we're treating MBC only until Ibrance fails or I'm sick of it all, if anything else breaks its staying broken, I cannot handle anymore on the plate, I really can't.
Yesterday I looked through old scrapbooks/journals/photo albums of mine. Found myself listening to Monster Mash in remembrance of the year I dressed up as a bar of Ivory soap for the 5th grade halloween party. I didn't know anything at all about cancer back then, unfortunately now i do all too well.
Hugs to you ladies, hoping to snap outta the rut soon, its just rough going.
0 -
Rabbit- I am sorry you are out of sorts. That BP sounds good to me. A little low, but good. Why the concern? Do you have other heart issues? Are you on other meds that may inadvertently make the BP low that needs to be tweaked? Are you drinking enough water? How do you feel-- sluggish or dizzy?
I totally understand the looking back at photos etc when I had no dealings with cancer. The good old days. Sigh....
0 -
Rabbit- I have super low BP also- as candy says - keep up your fluids. Only other advice is get up slowly, sit on the side of the bed for a minute before fully rising- I have fainted from jumping out of bed ( usually from a leg cramp). When I get up, I also grab the dresser or something just in case.
0 -
RosieRed - I’m sorry to hear about your progression but don’t let this get you down. I know several women who experienced quick drug failures only to find their magic drug with number 2, 3 or even 4. Good luck.
Rabbit - so sorry to hear about your dx sister. It’s tough to go through this mess yourself but it’s also tough to watch the downward slide of someone you are close to. Many hugs.
On a personal note, I met with a new, local Florida oncologist today and I like her approach and bedside manner. After my June PET, my Wisconsin onc was ready to move me to everolimus and exemestane based on a vague report that did not compare my June scan to the prior one. Based on this same vague report (no SUV numbers), my Tampa onc said to stay on Ibrance and said she could set up an appointment with an RO if that’s what I wanted but she did not discuss any particulars in the scan even after she saw a report with a comparison read AND I sent her a portal message with specific questions. Sigh. So today’s MO visit gave me a third opinion but it wasn’t just an opinion. It was a discussion. And she thoroughly read through my scan report with me. I was thinking (hoping) that my C2 progression was arthritis. She explained why she doesn’t believe it to be arthritis and suggested an MRI and RO visit. I’m on board with that. She doesn’t want to take any chances with C2. 👍 She sides with my opinion that the node progression isn’t likely Covid vaccine related for the same reasons I stated. Then we discussed findings in my left sacrum and femur. Clearly the sacrum is progressing but is the femur glow simply inflammation from the pin in my rod or is it really progression? Well, she doesn’t want to see the bone around my pin compromised at all, so she ordered an MRI of my pelvis for the RO to review. She mentioned that I could go the everolimus route but said her preference would be to switch to Verzenio and switch up the AI too - either exemestane or letrozole - but I could also continue on Fulvestrant. The choice was mine. We discussed her reasoning and she concluded by saying that we don’t have to make a decision right away. We agreed to get the MRI and RO consultation done ASAP and go from there. So it’s looking more and more like my Ibrance dance will be ending soon. Honestly, the progression doesn’t upset me. This is what I expected. What I didn’t expect was to have such a hard time getting a trusted opinion on a scan I got in JUNE. That just frosts my ass. But I think I’m off to a good start with this new onc. 🤞🏻
0 -
Candy, thank you for taking the time with everything going on on your end to respond. Yes, I'm showing signs of heart issues (thank you red devil), bloodwork gave the hint a little while back plus I've begun to have palpitations/irregular beats as well, SOB, difficulty working in the garden when last yr I had zero issue, bloodwork continues to show issue. On no meds besides Ibrance and Exemestane. MO is on me to drink more especially during Zometa infusions but having trouble drinking much as I'm not thirsty often. BP had been steady even with me having challenges getting enough water in. BP drop came out of nowhere and has stayed. Curious where it will be next month. Trying not to worry, worrying won't help. Thinking of you with all your going through, must feel like running on overdrive, I'm really sorry.
Nkb - that would explain the dizzy/room swaying feeling I had yesterday when I got up suddenly. Need to be more aware I guess. You get leg cramps too? I get them in the morning when I wake up, I make the mistake of stretching in bed sometimes and one of my calves will cramp something awful. Works itself out after a minute or two but ow!
RK- this new MO and the visit/discussion sounds promising. No protests or chanting needed anymore? I'm glad you finally got a comparison. I guess the radiologists down there have no need to fear a estrogen deprived woman/women for the time being. Your always welcome to dance the ole butt trumpet congo line here.
Agree about C2, glad you have a MO on top of things. On my original dx sister front, yeah, not fun. She's strong and determined, she reminds me alot of NicoleRod, determined and just goes for it. Still, what she is dealing with is hard and I care about her. This lady and I went through early chemo together and ended up meeting IRL, she held my hand when my ovaries came out. Sad, to see we both ended up in the club nobody wants to be in. Sucks.0 -
RK, that sounds like a very good and thorough discussion with the new doctor! About time, obviously, sheesh, from June you had to wait. Also love your phrase, "that just frosts my ass", am stealing that.
Rabbit, thank you for keeping it real and sharing with us how you're feeling. I'm so sorry to hear about your dx sister, sometimes it seems like it hurts more when it's someone we care about - I feel like I can handle a lot for myself but it hurts my heart when my loved ones are hurting. This cancer crap is rough going, indeed. Sending you hugs from afar, I appreciate you so much. Wish I could drive you around on a super deluxe riding lawn mower.
0 -
RK - I agree, this new MO sounds like a good one, at least the discussion shows they took some time to look at your scans, history and is making some decent recommendations. Also pisses me off that you have had to wait for this opinion/meeting since June. TICK...TOCK! We don't have time to sit around. Geez. Keep us posted and this Doc does sound like they are a keeper.
RRabbit - My heart is heavy hearing that you are out of sorts, having low BP and have the additional sorrow of having a original chemo friend faced with progression/bad news. Add in our Ibrance dancers RosieRed, Candy, Jack5ie, RK and others who are facing possible progression, it's a lot to take. Sending you positive energy and love.
SF-Cakes - I love the idea of you and RRabbit on a super deluxe riding mower! I agree with you, this cancer crap is rough. It's rough on us as the patient and it's rough when people we care about have bad news.
Candy - you are so thoughtful to reach out while you are dealing with so much with your sister, I think you were one of the first people to answer one of my early posts. Hope you are doing well and taking care of yourself while you care for others.
This week, one of my friend's son was dx with lymphoma. He is 15. They are waiting for biopsy results so don't know specifically what type and I don't want to ask the stage but he will start chemo on Tuesday. Of course, like for all of us, this came out of no where. If you are so inclined, say a prayer for Luke and his mom Susan.
All of you mean so much to me, this is such a craptastic hand of cards we share but I find your friendship comforting!
0 -
Rabbit- I get leg cramps on and off- if I stretch in bed I make sure to dorsiflex my feet or bend my knees- it helps. But, occasionally they are so bad that I have to get out of bed to lower my heel to the ground to get rid of the cramp.
This isn’t super healthy , but if I really need to push fluids I add a splash of ginger ale to sparkling water and I seem to be able to glug a lot more fluids quickly.
0 -
RK2020, so glad you finally had a good meeting with a new onc. Did you decide to travel or stay closer to where you are staying? I'm sure you'll come back and report on your MRIs. Hugs.
Rabbit, I'm sorry you're having some issues with your BP and heart. I understand the heart palpitations. Mine are usually from my thyroid, but I'm having them right now too. They are so annoying. I hope you find the answer to the low BP. I had one of those leg cramps last week. Lord, those suckers hurt. I'm sorry you're going through that as well.
Candy, think of you daily. Hugs
April, cancer is the worst, but when it invadesa child, I want to cry. I pray your friend's child has great success with treatment. I can't even imagine what parents go through during that. I'm sure they're thinking why it couldn't be them. My heart breaks for them.
0 -
Nkb- thats exactly what i do to get rid of mine. Thanks for the getting more fluids in tip, tho I'm probably likely to put more ginger ale in than suggested, eek!
You, KBL, and I with the leg cramps, anyone else get these?KBL- CT scans always pick up thyroid that has nodules - these have been there since 2006ish, presented as a single lump in throat, biposied 4 times over 6 years, benign everytime even tho more showed up at each biopsy. Haven't caused issue yet. I've seen so many have thyroid stuff show up before BC, I've also seen thyroid stuff show up after BC treatment for many. I'm thinking the thyroid has to be the key to something somewhere. I follow micmels thread a bit, your daughter did fantastic on that food network show, i would of devoured all her stuff, she really did great!
Aprilgirl - we are familyyyyyy, I got all my sisters with meeeeee.
Cakes - I've pulled myself out of funkytown a bit to give you some mood music to get you through your scan. This is just for you - music to reminisce about - I challenge you to try to "hold your breath" when your machine tells you to with this fresh imagery.
0 -
Omg, Rabbit, that’s hysterical. I love it.
Thank you for watching the show. I really appreciate it. She cooks for her whole crew. They purposely put her on the apparatus where the person cooks. They hate when she’s not there. It would be a waste for her to cook for me. I am extremely picky and can’t even eat pepper because it’s too spicy.
I too am having thyroid issues with regulation and had hypothyroidism long before BC was diagnosed. It is something they should test. My sister and I are the only ones in the family with it, but my oldest brother also just had a mastectomy a few months back after being diagnosed with IDC. I have a tiny nodule now, found on an ultrasound. They’ve never mentioned my thyroid on a CT. I have one Monday. I may ask.
I had a cardiac score done last week. It was 122. My husband had one. 32. I’m in the moderate risk category and am having a seven-day heart monitor done next week. There is quite a bit of heart disease in my family. I really don’t think I’m having heart issues, other than the palpitations, but better to be safe than sorry.
0 -
Rabbit - You are a stitch! Thank you for bringing your unique kind of levity to the group. Life is so much better when you can laugh. Oh, and I’ve been getting sporadic foot and calves cramps for a couple of months now. I also wake up every morning with a dull but deep ache in both calves and feet. Then it goes away.
Aprilgirl - I can’t even imagine my kid being sick. Thank God it happened to me after my own son was grown and independent. I’ll be praying for the entire family. 🙏🏻
SF-Cakes - This pic is for you. I think it’s a more practical solution for keeping Rabbit company. We could all pile in. Life is better when we’re in it together!
0 -
Oh my god, I love you all so much! Rabbit, I saw the video while I was in the lobby, after my CT scan and waiting for my bone scan...I started laughing so much, lol, the dog's ears blowing back! I dissolved into that boneless kind of laughter (haha, boneless) and I think some people weren't sure if I was laughing or crying - we're all wearing masks, of course, so who knows what's going on under there. Nearly peed my pants.
Lovely technician again, I let her know a friend had sent me a hilarious video, and she said, "Oh how nice, what of?" and I said, "um, dogs", and then I swear to you that during the part of the scan I really don't like (square thing right in front of my nose), she said, "THINK ABOUT THAT VIDEO YOUR FRIEND SENT" and I nearly lost it again. I wonder if the bone scans show a big huge grin on my face?
Sunshine, thank you for the book recommendation!! I read a quick blurb about the first Lady Hardcastle book and I ordered it, looks like a fun read.
KBL, I was first diagnosed with hyperthyroidism after I lost 25 pounds fast and finally went to the doctor - "killed" my thyroid with radiated iodine and then started on levothyroxine. The weight loss actually allowed me to feel a weird long growth in my breast, dratted sneaky ILC, so I'm grateful for that. I sort of forgot recently I'm not supposed to take calcium supplements within a few hours of the med, whoops, have to pay attention to that, too, not just cancer. Ha.
Aprilgirl, sending prayers for your friend's son, and for you. This is indeed a craptastic hand of cards, right? Grateful for your kindness and presence here.
NKB, ugh, I hate those leg cramps! Immediately out of the bed, faster than when the smoke alarm goes off, I swear.
RK, let's totally go for a ride, everyone piled in, with snacks and beverages and lots of pillows and big hats and sunglasses...I have a very clear visual of this, obviously! ❤
0 -
SF-Cakes, on the calcium, I was taking it at least four hours after thyroid meds and two times a day. I cut it down to once after dinner. Who needs that also interfering? I'm afraid my daughter may eventually have to do the thyroid killing thing. She had hyperthyroidism right after her son was born. Thankfully, it's come and gone. It's gone right now, but the chances of it actually turning into permanent thyroid issues is high. Having had both at different times, hyper is really hard to deal with.
0 -
to newbies and experienced ibrance dancers (who might forgot like ME!): please be mindful about what you must not take/drink while on ibrance. We did discuss about grapefruit, pomegranate, lime/ citrus or other things that increase effects of ibrance in our body a few 100 pages back, I did huge mistake and paid for the mistake, the worst part was that I was in 3rd week when se was high itself and I added more, it last several days or week off started until I feel better.I thought I should share it with you, Take care everyone.
0 -
Snow-drop, I’ve only heard of avoiding grapefruit while on Ibrance. What SEs would you get with eating citrus or limes? Thanks, Denise
0 -
RosieREd - Sorry to hear about progression. My MO also switched me from Ibrance/Arimidex (about 1 year) to Exemestane/Everolimus Exemestane/Everolimus after the F***** mestastisized. Finished 18 rounds radiation mid-May. Radiation Onc had me quit everolimus during radiation. Hoping CTs will have good news. Swelling in R-arm has gone way down and I'm getting optimistic that range of motion will continue to improve. SEs. Watch for scalp sores ( at first I though flea bites) and mouth sores -started getting bad prior radiation, went away while off Everolimus. I think both are coming back. There is a Rx mouth wash for the mouth sores, which I'm starting to use.
Rabbit - always look for your posts. Maybe it is the chicken fat. It definitely makes one of the dogs fart. Dog farts are the worst.
https://www.youtube.com/watch?v=Y_FOS1GvZOY0 -
BlueGirlRedState - thank you for telling me about your experience. I was warned of mouth sores and was prescribed mouthwash. They didn’t say anything about scalp sores, so I will be on the lookout for that. I’m nervous about starting a whole new regimen. My MO was very optimistic when I started Ibrance and thought I’d be on it for years. So I bought into it. Should have known better.
0
