Ibrance (Palbociclib)
Comments
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Rabbit - I'm having a surreal day and was thinking to myself that I'm surprised how well I've handled life today but it was like it was happening to someone else. But I did have one emotional moment. I was walking to the bathroom to get some Tums and started gasping for air. It was like a little mini panic attack that came out of nowhere and was gone as quick as it started. 🤷
I got my MRI results today. PET was concerned about C2. After the RO saw the MRI she wants to radiate C2-C6. I got my radiation face mask fitted today. Fun stuff. RO also wants to radiate several spots in my pelvis. We don't need the bones around my femur rod deteriorating. Rads are daily from 9/8 thru 9/28. Got scheduled for a brain MRI as well. The fun never stops. And when all this is done, I'm going to give Verzenio a try. Gosh I'm DREADING the diarrhea. After hearing so many “accident" stories, I'm surprised that I'm not having a full blown panic attack. But I can't change what's happening to me. I can only change how I react to it. And some days I'm better at letting it roll off my back then others.
Oh, I almost forgot the best part. My husband and I were both very impressed with my new local RO. Very. What a relief to be building a local team that I like.
And don't get me started on scans. I've had my June PET read by three doctors. And they all have a similar but slightly different spin. Grrrrrr.
I'm going to miss you ladies. You've helped me so much over the last year. And for that I am grateful.
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Katy - KBL have lots of good advice. After 14 days on Ibrance, they will run bloodwork. Don’t freak out if your ANC (absolute neutrophils) takes a hit. I only tolerated 14 days on 125 mg. Had to take a 14 day break to recover. Dropped to 100. Ditto. Dropped to 75 mg and completed 19 cycles before my MO and I decided it was time to move on. I hope you get 19 cycles x 5! And you just may!
The first Zometa infusion can be a doozy for some. It sure was for me. Stay very well hydrated BEFORE and after the infusion. I have my MO order IV fluids with the Zometa as I still get mild flu like symptoms for a few days after. I also take Claritan the day before, of and after.
Oh, and hydrate hydrate hydrate to help reduce Ibrance side effects. Good luck!
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RK2020, I’m so glad you found the right fit for you with your doc. I know how concerned you were finding someone new. I’m sorry you’re having to have so much done. There are a lot of people who aren’t on Ibrance any longer but still post. Stick around. I may be changing meds as well soon, but I plan on popping in if I do. I’ll be thinking about you when you’re having radiation.
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Katy - there are many of us on Ibrance that remain on the 125 mg dose so it just depends on how you respond to it.
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RK, don't leave us! There's still probably a bit of Ibrance stuck in your system!
Katy, I concur with the other comments on Zometa. The first one was the worst! Nausea, etc. The second one wasn't quite so bad and after that it was a nonevent. I do take a Claritin daily. I was also told to drink lots of water.
I wonder if we should start a Zometa thread. BTW have you noticed that when you write Ibrance or Zometa, you get the red underline for spelling? Same with mets. Haha.
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Thank you ladies! I appreciate all the tips and knowledge. It’s so nice to talk to people who understand and have been there. I’ll start hydrating now for next week! And I might ask for IV fluids as well. I tend to not hydrate very well so maybe that’ll help. And I’ll check out the Claritin.
Y’all have brightened my day! I hope you have a wonderful Friday! 😊
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I do know they gave me IV fluids without my asking for the first few times. It’s a pain because it’s more time in the chair, but it will be worth it.
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RK. sorry about the C2 news. As for Verzenio....I moved on to it three weeks ago (still check in here sometimes because I miss you all). As you've probably seen from that thread (not nearly as active as this) the experience really varies. I was really afraid of the diarrhea too, but it's turned out to be much more manageable than I expected. So far have an episode every 10 days or so, cleared up by 2 prescription Loperamide, until the next one. I also take Metamucil which may or may not be helping, hard to tell. In between life is pretty normal, though I watch what I eat a bit. However, so far I have no idea if eating is what triggers it, or just the constant doses of the drug itself. I may start taking a Loperamide as GI system starts in the direction of looseness, and see if that can head off full D, that seems to work for at least one person on the Verzenio thread. Anyway, I hope you also have a relatively easy ride. My ANC has declined a bit, but so far minimally compared to what happened on every dose of Ibrance, and I'm still on the highest dose of Verzenio.
Katy, sorry you find yourself here, but it's a good place. I found Ibrance an easy drug, except for the neutrophil issue. A lot of people are able to tolerate some dose and seem to do very well, so I hope that's true for you.
KBL sorry to hear about the confusing scan....is it possible to move up your MO appointment?? Seems like you've been waiting a long time to sort this out.
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Thank you so much, prairiesea. I probably could call and set a video call up, but I’m trying to wait it out. This is a silly reason, but I’m kind of going to test her this month to see if I’m going to ask to be moved to a different doc in the office. Way back when I started seeing her, she’s the PA, which I’ve asked to stay with her, she mentioned that she was more of a pushover. Well, I’ve learned that’s probably true. I’m at the point where I’m not sure she even looks at my chart anymore because she feels I’ll let her know what’s in it. Lol. I take full responsibility for always asking for things from her, but we should still be a team. I literally had to ask her if I should get a CT because it’s been a while. She said, Oh, let me look. My idea this time is to go in and stay mostly quiet to even see if she reads the report before I get there.
Also, last time was the first time she mentioned how far behind she was. I think she’d be happy to put me with someone else. I think after two years, they may just think everything is going to stay the same.
I do go monthly, and it will have been a month when I see her.
I’m so glad the Verzenio isn’t causing too many issues. I hope it continues to be good to you and you can stay on the highest dose.
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Well I posted Tuesday on here about a thyroid issue. I messaged MO about could I look into the issue locally-- local endocrinologist, local biopsy (as before). She said ok. I messaged PCP Tuesday. Today Friday. No response. Called PCP office. Doc out now till next Tuesday--- after Holiday. Great!!!! Guess not a priority. Grrr.
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Katy, welcome welcome
You've got a plan together and now its time to put it into action.Ibrance - the first 1-3 cycles will kinda give you an idea of how the side effects will effect you as your body gets used to the medicine. You may experience dry mouth (sucking on a mint or lozenge or something similar might help with that, masks seem to make the dry mouth worse as well if you need to wear one so I find the mint helps counteract that). Nausea a bit for some (spearmint tea or ginger candies help), fatigue, mouth sores are common (Colgate Peroxyl rinse can help if they appear- small bottle by regular mouthwash). Your MO might check your blood a couple times first cycle to see if dose needs to dropped due to neutrophil counts (white blood cells). Constipation can be a bit of problem as well so we all joke about prunes in the cubbard or prune juice in fridge or a bow of raisin brain in the morning. I see you've been through AC-T chemo. You will find Ibrance much much kinder than the red devil. Promise.
Arimidex - like all AI this might cause some joint pain and hot flashes, some moodiness. I find those effects come and go.
Lupron- this shot is given high up on derriere or as Forrest Gump would say "Right on the buttocks" -sorta. I didn't feel they hurt. First they will be given monthly for a few months and then you may move to getting a 3 month dose every 3 months. Hot flashes and symptoms of menopause are common because its forcing your body into menopause. Lupron didn't end up shutting my ovaries down and I ended up getting both my ovaries and tubes out - that was a easy surgery with quick recovery. So don't worry if that ends up happening.
Zometa - is a 15-20 min infusion once a month to start. The day after you will feel flu-like. Usually lasts 2-3 days. I found the first 3 infusions to be the roughest overall, but still experience a milder flu-like feeling after getting Zometa for 2 years now for a couple days following. After 6 months or so you may be moved to getting it every 3 months instead. I've heard about dripping over 30mins can help lessen the side effects, but I'm just in a hurry to get out of there and do the 15 min version.
In the Stage IV setting you will walk valleys, climb mountains, trek through deserts, meander through plains and fields with what feels like a heavy weight on your back in each of the 4 different seasons of weather as you manage treatments and try to figure stuff out. Some days will be hard emotionally. The first few months are hardest. Let life adjust to you and try to remember to breathe. Most of all, don't walk alone. Lots of ladies here willing to walk with you and that makes the weight on the back easier to handle, the weight of the burden is shared
Welcome aboard I concur on the hydrating part. I sometimes will drink Gatorade Zero or Propel for the electrolytes, tip one of my original dx sisters gave me that's helped when just drinking water is hard. Recently a poster Nkb gave me the tip of adding a splash of ginger ale to water...and I just drank the ginger ale...eek..lol. This all may be overwhelming kinda like going through Chemo class when they tell you what ifs and give you all this information making you wonder if you can keep it all straight. No worries, taking the first pill was the hardest, the unknowns and all, I thought it would be like what I had just went through with chemo, but its been a surprise, not easy, and in some ways hard, BUT I've been able to manage pretty well. So, take a deep breath and climb aboard with us. Welcome again 0 -
Felt I should split this one from my advise to Katy above.Spookie - You HAVE been getting stuff done. Woo! I myself one of those lift recliners with the heat and massage...game changer - w-o-n-d-e-r-f-u-l. Only problem is my cat has figured out the buttons on the remote and I sometimes catch her on my chair vibrating away upside down on her back. I know you got critters so beware you might have to fight for your chair. lol.
Candy - here's for good things with Lynparza, I haven't seen much about the drug, I think I wasn't around in this section when Pat was on it and not many others in these parts actively on it so curious. Long long run, minimal SE.
Zofran was like a literal cork to my butt. Definitely keep prunes handy etc, compazene was better but left me drowsy/dizzy off and on. Maybe an combination of alternating ginger candies/spearmint tea and the nausea meds might help and keep things flowing. Don't you love how holidays seem to get in the way of getting anywhere medically ie: appt or getting scan results etc. Had my scans fall near Easter and 4th of July, long weekends, extra day waiting for report. Grrr. Cakes - OMG lol, I've crashed your scans and have been forever immortalized on film with you! Thank you for your comments, they truly meant alot to me. I was pretty much a wallflower that was spunky only with my beloved or people I had established trust with prior to cancer- I've been betrayed in painful ways by people who share my blood, I've basically lived as an orphan since I was 20, I can't tell you if my mom and dad are alive or dead, I haven't seen either in 20 yrs and not by my choice. My mother knows about my cancer and she doesn't care. Cancer forced me to break out and it was really hard, learning to trust more. One of my friends noted how all my friends were so much older than I was. Like I was gathering mom's to replace my absent one. Even tho my beloved's mom has basically adopted me, its still hard to live with the fact that I will die and my mother won't care one bit that I did. They say the greatest human need is to feel loved and I've truly learned the reality to that statement. It feels good to be loved amongst all of you
RK- you are hearby forbidden from strolling too far from this thread or from us. The Ibrance thread is kinda like Hotel California, once you come in, we don't let you leave!
I've had those mini panic attacks that you describe. Kinda come out of nowhere and also include a electric or prickly feeling throughout the body. Friend of mine who's a nurse said its a chemical adrenaline influx that causes that - takes a bit for it (15 mins) to work out through the blood so I just take deep breaths and say "Its only a feeling, it will go away" and it does. It feels like these attacks come when like you I tell myself, gee I'm holding my own here and then its like a mortality snap back. My goodness you have a lot going on, even before you start Verzenio. Be sure to let us know how all works out and know we'll be there for pocket duty. That face mask for the rads kinda makes you think of Jason minus the chainsaw right? If the rads was happening closer to Halloween you could really have fun with this Still, it could be a good Halloween decor item - hang it from a tree with some uplighting with a chainsaw loop playing in the back I encouraged another sister friend of mine if she needed a face mask molded to use the holes in it to help grow tomatoes, then can the tomatoes since she's a canner. Kinda like an F U to cancer but also kinda practical, sorta, lol. Other friend of mine used it as a bird feeder, cracked me up. Joking aside, I'm hoping for stellar results from the rads and the Verzenio and a really boring brain MRI. prairie- good to see you check in
Ive been curious what Verzenio's like, many here may move onto it at some point so your experience is invaluable as well as the tips. I'm glad its been treating you good over all! Anyone seen or heard from Jackie? She's last signed in a month ago and haven't seen her post in piqray thread for long time. Hoping she's okay, WBR plus piqray was rough on her. Miss her and hope she's doing ok.
PS: I've lost way too many a typed paragraph in bc.org - will write something press send - it refreshes and its gone. So I open up notepad, write it there and then copy paste, much less frustrating that way.
MO on the 15th, day before Aprils scans. Scans in November. Would be Oct normally but MO said we could go every 4 instead of every 3 months. I'm grateful, one less time I need to drink that barium crap.
Anybody ever have a day where you just feel like this? Your not sick per say, but mentally your like yep, describes how I feel.0 -
Rabbit, what wonderful advice for katyblu.
That you would trust here with such a personal story makes me want to give you the biggest hug. I truly don't know what to say. You are one of the kindest people here.
And I love your sense of humor.
As for the cat, that is just hysterical. I can just picture it.
I haven't seen anything posted by Jackie, but I thought there had been something posted a while ago by someone who knew what was going on. I just can't remember who.
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Rabbit - I must say that your suggestion to cut and paste out of notebook is a good one. I love this thread but absolutely hate the format of the forum and how difficult it can be to post. And let me just say this…I think you are a pretty special person and if your mom can't realize that, it's her loss. I'm sure it still hurts but you've got us and your beloved and beloved's mom. And I hope that's enough to give you warm fuzzies.
Prariesea - TY so much for writing about your V experience! I'm super nervous about the big D with Verzenio but hoping for the best as my MO said that based on my reaction to other drugs, she will start me at a medium dose which I believe equates to 100 mg x2 daily. I'm all about QOL and want to continue to be out and about daily. I will shrivel up if I spend too much home time. My hubby will do whatever we have to do but I sure don't want to negatively impact his retirement years with my issues. He puts up with so much already. And I will seek out the Verzenio thread soon.
KBL - I feel for you when you described your monthly visit. I suppose that's good enough for some. But I want MORE from my provider. I shouldn't have to go into Dr. RK mode. We should be a team with them at the helm but they should still be willing to have discussions and honor our input. My new RO commented on how well versed I was on my history and at the quality of my questions. I felt she was really smart and had my back but also valued ME and my input. And I can't tell you what a burden that lifted off my shoulders. I know health care professionals are often overloaded but our LIFE is at stake. We deserve to sleep at night knowing that even though we've been handed lemons, someone is helping us make lemonade.
I know there are other threads on BC.org but I feel like you all are my security blanket. My first life preserver when I was at my lowest…so I might hang out here for awhile. As Sunshine said, I probably will have a little Ibrance stuck in my big toe for awhile. 😂 And I'm definitely hanging my Jason mask from a palm tree this Halloween!
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RK2020, love the lemons/lemonade analogy. My PA is young with a baby just a few months older than my grandson. I can’t imagine the stress she’s under, so my heart said to give her some grace. My SIL has been begging me to change, and since I’ve known in my heart that I have been progressing with no proof, I think I’m going to jump this month. I hope she doesn’t take it personally, but it is my life, and I need a change for me. Thank you
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Lynparza update--- Here we go. Took first dose just now. Was thinking.... with Ibrance we had a "welcome kit", lots of literature, the never ending commercials. With Lynparza--- Astra Zeneca-- no commercials, no welcome kit, just the bottle of meds. Not even fancy packaging. Just a bottle of 120 pills. Hum....
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Rabbit - Wow! Thank you for all info on my new cocktail! Your tips and insight will be invaluable. It is definitely great to have others to share with. My husband is wonderful but he’s a fixer, so his approach to all this is “Well we’re just swapping out one pill for a different one and everything will be alright.”
I think the thing I’m most scared/nervous/sad about is that there’s no end to look forward to. With chemo and rads you knew how many cycles you had and you could count down. But I have to come to terms with this being my new normal. And I hate that phrase 😂 But its true. My husband says it’ll be easier once we get into a rhythm, so I guess I’m going to try to focus on that.
I hope everyone is doing okay today
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KBL, wow, yes, I believe your MO needs to read your reports ahead of time and be prepared for the appointment with you! I'd probably want to "test" the doc, too, and yet you are having symptoms, I think you need someone who is ON TOP OF THINGS! Your life and your treatment is so important.
RK, I'm sending you lots of peaceful and calming thoughts, the "mask" for radiation, yikes. I hope the radiation works beautifully and ooh, yes, use that mask thingy for Halloween. Thank you so much for your comments about the wide variety of scan interpretations, depending on who's reading them, and also wtf with the wide variety of scan interpretations?! I've quickly learned to wait until my MO is talking with me to try and interpret the scan results, because she tends to put things in a larger perspective.
Candy, huh, no swag with lynparza? Lol, I find the ibrance packaging to be kind of ridiculous, it's all wrapped up like it's a present. Which I guess it kind of is, really, but not a present I ever wanted. Hope the new med is going okay for you so far.
Katyblu, the "no end to look forward to" regarding treatments, yes to that feeling/thought. I still get sad about that reality at times, and am still in denial sometimes.
Rabbit, it completely sucks when a parent abandons us, no matter how old we might be. My biological father stopped interacting with me years and years before he died – which was okay with me, as he wasn't kind or supportive in my life. For example, his first question whenever we infrequently talked on the phone was, "how much do you weigh?", and this was when I weighed about 125. I recognize that my recent weight gain triggers all that emotional crap, and I try to be kind to myself. You are such a lovely, perceptive, insightful, hilarious person, and I'm just going to step in as your big sister (I'm 51) who definitely cares about you and is pissed off that you have cancer! I'm going to see if I can download a version of the Bueller keyboard on my old Yamaha electric keyboard, and then play some Barry Manilow songs on it.
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Katyblu, I’m wishing you many reports of mets shrinkage on your new treatment. And hopefully there comes a day where you realize you’ve been on I/L for a while and you realize you feel pretty good. I’m 2 1/2 years in and honestly wouldn’t mind staying with this treatment indefinitely if it continues to work.
Candy, What a difference on the two drugs with extra stuff. I actually still use the pill caddy from Ibrance, but the booklets, notebooks and other info just went into a closet. I did feel kind of eased in to the new life of stage 4 with it, though. Hoping the Lynparza is easy on you and hard on the mets.RK, Best of luck on the Verzenio.
I too am really hoping anyone who moves on to another treatment will keep posting on how you’re doing. I don’t often have much to post but I read all the time. You all are like friends who I’ve never met in person, but feel like I have a lot in common with. Nobody leave, please???
The latest update on me is that I had scans yesterday. Bone scan came back good, no areas suspicious for mets, just a lot of degenerative change in shoulders, hips, knees, and ankles. Arthritis, I guess? I haven’t had any bone mets to this point so was hoping for this to continue. The liver mri has not been posted yet so I probably won’t see anything till after the holiday weekend.
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Lol, SF-Cakes, swag. I said to candy on the Lynparza thread that the Xeloda folks sent me free lotion and the neratinib folks give me free immodium. And I said, "Hey Astra- Zeneca, where's the swag?"
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Katyblu, when you said, "I think the thing I'm most scared/nervous/sad about is that there's no end to look forward to. With chemo and rads you knew how many cycles you had and you could count down" I could remember that feeling. My first mbc treatment was taxol chemo, and as I finished my fifth and final cycle, with NEAD scans, I could hardly wrap my head around the idea that in no way was I done, and that this was just the first in a list of lifelong treatment. Somehow I got to the place where cancer treatment was a part of my life, and I would adapt and carry on. I think hanging out on BCO helped normalize it. But in my house we did not call it the new normal, but the new weird.
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SF-Cakes, Monday, the 13thwill be the test. Let’s hope I can keep my mouth shut long enough.
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Gotta remember “the new weird “. Good one.
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Lynparza update----- Well I took the first dose this morning with breakfast. Some nausea today, but I had nausea before the Lynparza too (have had nausea coming and going for quite a while-- during Ibrance use) so.... I did notice more saliva today. You know how when you are going to puke you mouth gets full of saliva. I have had increased saliva all day. Then waves of nausea. Like if I smelled something bad it wouldn't take much to hurl. Hum... I take 2nd dose in about an hour. I will take with crackers or something. See how dose #2 goes. I wonder about how it will go as time goes on.
Rosie- Woohoo on good bone scan. Hoping for good liver scan too. Hate you have to wait until after the Holiday.
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welcome to new ibrance dancers! Yay for those who received good results.
Candy, thanks for sharing your experience about new treatment, I hope it will be good on you with zero se. I never received any Pfizer welcome kit! Ahhh this specialty pharmacy in the cancer clinic must’ve taken it, not cool!!! I feel I am in kindergarten and a kid took my lollipop!
RK, ladies are right you are belong here, please report back about your new treatments.
I had a trip to ER yesterday, my calf started being swollen, red and stiff, otc hydrocortisone didn’t work so headed to ER. The ER hot and attractive physician-noticeable even behind a mask (!)- came and started breaking ice, very carefully said it is most likely blood clot, do you know what clot is? I let him know that I measured my calf and the difference is 1/5 inches, he impressed “how and why do you know these stuff”, I replied I am stage 4 I don’t scare this little thing, and I have to learn many medical terms/ prevention (more credits and thanks to you ladies for sharing different exercises so we learn from each other). ultrasound’s result back negative, so his best guess was skin infections, so oral antibiotics prescribed. Today my leg looks like a watermelon! More red and hot , my ankle almost disappeared. Emailed my MO but it is long weekend, since I remember my all emergencies happen over holidays!!! So I guess I have to trust the antibiotics do well. Pharmacist said cephalexin doesn’t interfere with ibrance, so I continue taking ibrance until MO’s response.
I appreciate any thoughts about skin infection?treatment?experience? Antibiotics and ibrance etc.While I was in the ER waiting room, I saw many people with not urgent cases -some silly reasons- showed up!
Have a smooth weekend everyone
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Snow-drop, so sorry you had to visit the ER. So cute how you thought doc was cute. I’ve had a few of those myself. I hope the antibiotics work. So frustrating when crap happens at all,but when it happens on a holiday weekend, it totally sucks. Keep us posted.
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Snow-Drop....so sorry to hear about your leg. I have had a couple of bouts with skin infection on my leg---cellulitis---in the last year and half or so (while is was in the diagnostic process that led to MBC). It did not blow up as much as yours, which definitely sounds worrying. But I think it can. I caught it fairly early, bright red patch each time that was hot to touch and painful. Both times had to go back for a second round of antibiotics, as the first was not enough. And I think in some cases they will put you on IV antibiotics. Pay special attention to any lines of rash heading up your leg toward your upper body. They wanted me to go straight to the ER if that happened. I hope you feel better soon!
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Portmanteau, I'm sorry you're having to start this, but I've been on it for a little over two years. I was never told to refrain from sex or be careful when I use the toilet. The only thing I do is make sure no one touches the medicine, including me, unless I wash my hands immediately afterword. I push the pill through the godawful pack it comes in (I have a hard time with my hands) and put it straight into my mouth without touching it. I'm curious to see what others say because I have had sex during the 21 days on. I was never told anything about bodily fluids.
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Portmanteau, I was not given any cautions about sexual activity either, but I was told to flush twice after using the toilet. I didn’t really keep that up, btw. I think the fact that some consider Ibrance “chemo” is where the confusion stems from. I don’t think it’s chemo, but a “targeted therapy”. I may be wrong of course, and would like to hear what others say on that.
Snow Drop, I hope the swelling is responding to the meds you got. Please let us know.
Update on my scans now that both are posted. Bone scan, nothing concerning for metastatic disease. Liver MRI, ablation zones still clear, no other metastasis shown. So yippee!! Good for another 3-4 months. There were a couple things noted on the liver mri that I’ll be asking MO about, hepatic parenchyma and saccral aneurysm (1.5 cm) of splenic artery. The aneurysm sounds concerning to me. I looked it up but still not sure how worried to be.
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Snowdrop ouch your swollen leg sounds severe. Hopefully the antibiotics turn everything around.
Portmanteau 4 years on ibrance never was told anything about refraining from sex or toilet seats.
Rosie 24 great news on your scans! I don’t know about the aneurysm part but you haven’t spoken to your ONC yet right? Hopefully it’s nothing major.
Enjoy the weekend ladies
Tany
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