Ibrance (Palbociclib)
Comments
-
Rabbit, so happy for you!
0 -
Great news Rabbit and I’m ready to dance with you all (and Kevin)!
Snowdrop - I’m ready for pocket duty. When you reach in and feel us all, I hope it makes you smile.
0 -
Fantastic, Rabbit!
0 -
Snowdrop pocket duty for sure!
Congrats rabbit stable mable!!!
Tany
0 -
Snow-drop, it's getting crowded in here, in your pocket, too, for your scan tomorrow. I've got so much weird stuff going on in my lungs, we're taking a wait-and-see approach. Sending you hugs.
Rabbit, woo-hoo for stable! Let all those pent up tears go, yellow light for the next few months! In time for the holidays! I'm including a gif here for you of these delightful young men in BTS - this is your MBC crew dancing (we're pretty talented, aren't we?) This is from their song 'Not Today', which I love and is so appropriate! NOT TODAY, cancer, not today.
0 -
Snow-drop-- Pocket duty.
Rabbit- Woohoo !!!!
0 -
Rabbit that’s sooo great!! Definitely time to dance.
Snow-drop, in your pocket for your scans. I brought seasonal treats, pumpkin pie Kit Kats!Thank you ladies for helping ease my frustrations at having to take another week off of ibrance. Hopefully my blood work will look better next week!
So today I really feel like a full blown stage IV cancer patient. I talked with my palliative care team yesterday about my pain meds. The oxycodone ER hasn’t really been doing it for me and I’ve had to take the IR several times a day. I even had to double the dose a few days. And I’ve been having nightmares and body twitching since I started taking the meds. My palliative care doctor called me back today and she changed up my meds and prescribed morphine. This just makes me feel like a real cancer patient now. For some reason Ive always associated morphine with EOL cancer. I know I’m not close to that but somehow this change has shaken my confidence. Is being on long term pain medication a step in the wrong direction? Is morphine too much? My pain is normally a 3 to 4 daily but can elevate based on movement. There are times throughout each day that my pain can shoot to a 7ish. I don’t know, I’m just worried.
0 -
DH was on oxy for a long time. He was a stubborn mule, wouldn’t take on regular as directed to keep pain down. Who knows, may have helped better if he had. Palliative care put him on morphine. Instant relief. There is fentanyl patches too for later. He didn’t get those
0 -
we all dancing w/Rabbit...
0 -
Great News Rabbit!
Hope the scans were easy roast and boring for those in the other room, Snowdrop!
Hang in there Katy-blu. The pain does a number on us, for sure. People take morphine for pains unrelated to cancer. It’s just a bridge to get you to feeling better!
0 -
Great News Rabbit!
Snowdrop, Hope the scans were easy peasy (and boring for those in the other room)!
Hang in there Katy-blu. The pain does a number on us, for sure. People take morphine for pains unrelated to cancer. It's just a bridge to get you to feeling better!
0 -
I'm not great at keeping up with this thread, but with all this dancing (congrats Rabbit!), I thought I'd pop in to say I just got stable results as well (I'm at the end of my 3rd cycle of Ibrance). I've been dancing too.
Also, I wanted to share that I've bopped around with the dose (125, 75, now 100), not because of lab values but because of other side effects (major headaches and feeling like my "nether regions" had fire ants - sorry TMI, but maybe this will help someone). I finally realized that I was frequently drinking an herbal "cinnamon apple" tea that had orange peel in it. I also had been eating a lot of meals with lemon/lime zest. They say to avoid grapefruit and blood oranges, but you might want to double check other citrus additions if you are having issues with Ibrance.
0 -
Wow, Jsniffs, who knew about the citrus peel? The "fire ants" thing sounds like a whole lot of un-fun! Hope that's resolved. Thanks for sharing your experience. I've been stable on the 100 dose, but have been experiencing some prickling/tingling sort of neuropathy. Not really painful, just mostly annoying.
Carol
0 -
RRabbit - congrats on stable Mabel results! Enjoy the weekend!
JSniffs, congrats to you as well on your stable news! Awesome! Interesting on the citrus peel....I have been eating tangerines a lot - I will slow down because fire ants in my pants does not sound fun at all.
Snowdrop - in your pocket for your scans that were earlier today. Hope you get results soon!
Kayblu, I am so sorry about the pain you are in. Hope the morphine helps asap, but also the pain starts to diminish so you don't need morphine or pain killers all the time.
SF-Cakes and Snow-drop, I love the dancing gifs!
Hope all of you have a good and or restful weekend!
0 -
Jsniffs - Congrats! 💃🏼
Sunshine - I have a bit of leftover neuropathy from chemo in 2016. Ibrance definitely aggravated my feet situation and also made my legs feel very heavy and achy when lying down. Now that I’m off Ibrance, my feet and legs are back to their ”post chem normal” so for sure it was the Ibrance.
0 -
Just checking into the Ibrance community even though I've moved on to Verzenio. Great news for Rabbit and Jsniffs!! Snow-drop, thinking of you for the scan. Katyblu, so sorry about your ongoing pain. Maybe this will bring some hope--though I do think the pain you describe is worse than what I had, so I want to acknowledge that and sympathize, I did suffer on and off from pain from my spine and rib mets for many months after I started treatment (radiation, CDK4/6 inhibitors, letrozole, zometa) about 6.5 months ago. It's really only in the last couple of months that I have begun to feel more "normal" most of the time. So that can happen.
Missing this thread, Verzenio folks are also wonderful, supportive and full of suggestions. But kind of all over the place posting in many different threads. Ibrance thread is a steady community to come back to now and then! Appreciate all of you.
0 -
Congrats to those of you with good scans! Glad to see your still dancing.
0 -
Prairiesea, that does give me hope, thank you! My pain isn’t awful, but it does really limit some of the activities I normally do. I just feel weird being on morphine. I’m hoping that my PETscan on 22 November will provide more insight into the cause of the pain so we can target it better. I’m glad you’re “normal” again!
Thank you everyone for your well wishes. Hopefully the morphine will work. I can on just one dose, I didn’t have any nightmares last night so that’s a start.
0 -
Katyblu, no nightmares is a good thing! I have those, although not every night, and I'm very happy for you.
Regarding the "prickles", my MO didn't think it was a side effect from the Ibrance, but when I got my last refill I was asked, as always, if I had any side effects or symptoms that could be related to the Ibrance. I said yes, and so when we were done getting the order filled, I was transferred to the pharmacist. I told her about the prickly neuropathy thing and she did a quick check and said that around 13% of people report that side effect. Good to know.
Carol
0 -
congrats to all with stable scans !
It looks like I’ll be moving to the 75mg dose. The oddest thing happened . The day before my last pill of the cycle my neutrophils were 1.9 which isn’t terrible but then this week I ended up in the ER with unbearable abdominal pain due to Spontaneous bacterial Peritonistis. Again. I’ve been on long term antibiotics to prevent such infections but when they did blood work my total wBc count was 0.6! So definitely some bacteria took their opportunity. One of the MOs thought it was strange for the counts to drop that low given I was close to starting cycle 2 and she said ibrance doesn’t typically cause a dip that low for opportunitistic infections to take hold. So that’s been disheartening. But my MO said we can try thr 75 and if worse comes to worse , do a 2 and 2 schedule as she has some patients that tolerate it better.
i would have been delayed this cycle anyway because we had a ransomware attack on the health care operating systems and so many things got put on the back burner.Just wondering if anyone else experienced dips like this in their total white counts on ibrance.
I know last time I talked about my platelets. They had improved , just a little lower now due to the infection. hoping this is my last round with SBP cause it ain’t fun and it takes me away from home.
0 -
I'm on 75mg now. I didnt have those terrible side effects on the higher doses that im so sorry to hear some of you describe, but I was extremely tired. My bloods were VERY low. I seem to be tolerating the 75, although .9 seems to be the new norm on my ANC. Most of my bloods now seem to be too high or too low, but MO seems satisfied.
Stupid scans question here: so "no change" is good? I was hoping for some tumor shrinkage or something. Seeing surgeon again next week.
0 -
Another set of scans in the books! Thank you ladies for all your support, means so much!
Thank you to all the dancers that peek out less frequently for peeking out to say hello and congrats too Scans this go around were different on many levels. Bone Scan tech ended up being the pulling yanking arm one from a couple scans back. She remembered me and I certainly remembered her. She could tell I was visibly uncomfortable and admittedly I was a bit irritated I had her again. She picked up on it tho I was trying so hard to be polite against how I was feeling during the Q+A part before the isotope injection. She basically called me out at one point and I explained she was rough with me and aloof last time and even scolding toward me telling me she wasn't doing anything wrong when she was pulling and rough in places of known cancer and I wasn't looking forward to a repeat. She was caught of guard I said anything and even accusatory toward me saying it didn't sound like her. Gaslighting. I stood my ground tho but realized I wasn't going to really get anywhere and just wanted to get the injection so I can skedaddle for a bit. Upon my return for scans she said she felt bad and wanted to make this experience better. A few times she yanked and then caught herself. She was good about helping up and down as I had to empty bladder for the close ups. She did watch my scan unlike the last time. After it was done she said "After watching I realize this must of been horrible for you, but hopefully it wasn't as horrible as last time". I said it was better, thank you. I have a feeling I may run into her again, maybe I'll just have to be a guinea pig on teaching her gentleness etc with patients, I felt my speaking up wasn't just for my benefit, but I thought of you ladies too and I wouldn't of wanted it for any of you, that's my criteria for making a stink now, "How would I feel if a fellow dancer dealt with this?" I call it preventative measures. Looking out for me, trying to help others of us out there not encounter same things.
CT almost didn't happen. Barium was hard to get down this go round. Forgot to give me two different flavors in the bag. Was gagging and praying trying to get them down but I did. With Barium up to my neck receptionist tried to tell me my co-pay was triple the normal. I explained I do this every 3 to 4 months I know exactly what my co-pay is and what your saying it is is not it. Then they threatened if I didn't pay the higher amount I'd have to reschedule. I prayed the barium would stay down while I blurted "If you do that you will need to explain to my oncologist why I don't have scans for her to look over tomorrow at my appointment, I have Stage 4 cancer, this is unacceptable!" After still arguing with me over amount, I said I would pay the amount I knew was correct and take up the rest with insurance later. Was told they would need supervisor approval. I said get it, I'm not prepping for this again. After pacing and a 10 minute wait, approval was given and I was taken back for my scan. The nurse who did my scan was fabulous - thank God, kind and patient - definitely had the bedside manner we all need at this stage of the game. After my CT I walked up to the window of the receptionist who pulled the strings, dropped my mask down a bit so she could see my face and through holding back tears I thanked her and apologized for being upset - she smiled and said if it was up to her she would of just let me go in - I smiled back and went on my way.
At my MO appt the next day - which I had to walk into totally blind because radiology was so backed up I couldn't get a copy of my bone scan report and medical records was closed when I showed up early prior to my MO visit to get a copy. Never walked in blind before, I was a mess. Ended up only getting partial news. Bone Scan was back - stable. CT hadn't even been read yet. MO said she was most concerned about bone scan, I said I was mostly concerned about CT and wasn't happy walking out with partial info. MO said they were down 5 radiologists but that she would call and push them and get me the answer before the weekend and would call me on her cell phone. A trip to taco bell afterwards for one of those Cantina cheesy melt tacos (OMG) and an hour of trying to decompress later I got a call from MO personally - CT stable and unchanged. Que going through every emotion possible in 15 seconds followed by heavy heavy waterworks. Whats worse is Beloved had injured his back in the midst of all this (irritation of an old SI joint strain he had a long time ago in his 20's when he was a mover) and we weren't sure if he would need to be out of work for awhile longer than the half a week he was already out. Almost a week lost in pay. On one income. Cancer is expensive. Was forced to use his personal days/vacation earlier in the year to make up for Snow days he can't run when various governors shut the highways down - they don't pay him for snow days. Its major BS. With rest he's much better and using a support brace on his back now like he should be doing. Was out running a double today to make up. I draw a hot bath for him when he gets home, give him my lift chair to use (which I know he secretly loves with the heat and massage it has too) and give him as good of a plate of grub as I can make him. Was pretty sad to see the 2 of us walking around looking like a pair of frogs standing up with their pants janked up to their chest hunched a bit going "Ow!" "Ow!" the last few days lol. The other worse thing is bc.org was glitching for the past several days so I couldn't even bitch and moan. First world problems, I know, but still, it helps to be able to vent when it feels like your in hand to hand combat with Beelzebub himself.
Onto my fellow dancers!
BAP - Glad to see your checkin so I can edit my inquiry how Ibrance is going. Cakes had a big dip that landed her in the hospital but has been doing good for awhile now on 75mg so take that and run with it (Cakes can better explain what happened than I can with the counts etc). I'm glad MO is open to 2 and 2. I think there are some others on here doing 2 and 2 and did well on that too. So don't lose heart with Ibrance
Ransomware attack on heathcare operating systems, good grief. I wish hackers would stop doing that, they are messing with peoples lives. So sorry you ended up in the ER with that bacterial infection. I hope nothing else happens to keep you away from home. KBL - how are you feeling? Appetite better? Thinking of you
Anntop - So glad things worked out concerning cost of Ibrance! Woo! MO/Specialty pharmacy helped me apply for the Pfizer Ibrance co-pay thingy (technical term) since we have private insurance, zero co-pay with it. (If anyone's reading needs to know I think Verzenio has one too). Hope 1st cycle is still going well. No worries if need to drop down, all dosages of Ibrance show same benefit
Sondra - you definitely get it about bone scans. Bone Scan ended up stable and I thought to myself. It better be stable! Oooo la la on fancy china tea and a brownie during recovery from angiogram. Tre' chic...magnifique!
Katy, concerning pain. Mine has been up and down, its been as high as 7/8 but usually sticks around a 4/5 most days. I tried MM (Medical Marijuana) but didn't work, truthfully didn't get to try other strains due to cost prohibitation/and that it didn't even really dent the pain so I was put off as it were. Then I tried Tramadol for a bit as MO didn't want me on opioids yet/I didn't want me on opioids yet. However, I didn't feel "me" on Tramadol. Was nauseous from it and I felt like I was traveling the milkyway or something on it - just felt off and I didn't like it. So I stopped. Some have sworn Gabapentin helped them which is a neuropathy drug - tried that for taxol neuropathy- worked - stopped when it went away on its own after about 4 months with gabapentin's help - tried for cancer pain - no go - didn't work. I've been a tough/stubborn bird so I've been living with 4/5 pain all the time. Some days are better than others but its always there. It definitely brings the invisible visible when pain crops up and you know its from the cancer. So much is hidden within us and sometimes we can't see it. But when we feel it, we know its real and it adds a new hyperawareness to it all. I think the pain issues is a personal one in how to deal/cope. I got myself good comfortable shoes to try to keep my walking supported to try to help with pain, slippers that are supportive for around the house and those things do help. Unfortunately we do need to baby ourselves a bit, hoping pain is better managed or you've found a balance with the meds to take the edge off. I did experience increased pain for a bit when some mets were trying to heal/beginning to heal in the bone so hoping scans on the 22nd show that for you. Crossing fingers, toes and heart for you
WeninWi- I was told try to take it around time of day - more to make it routine - and if I was off by a couple hours because of a "Whoops!" chemobrain moment or something it was okay. No worries about beinng late taking it alittle bit
I've changed what time of day I take it (usually taken at a meal) for each cycle, just getting the pill in there is really what matters Positive - for nausea I try to go the natural route because compazine makes me dizzy and Zofran is like a butt cork. Flat ginger ale, ginger candies work (near the cough drops they have ginger lozenges - those helped a lot with AC chemo), spearament/peppermint tea helps both for nausea and a disheveled tummy. BRAT diet can help til you get the digestive factory in agreement again. (Banana, Rice, Applesauce, Toast). Hope you feel better soon!!
RK - I'm glad your MO is working with you to try to not only help you be able to stick with Verzenio but also is taking into account your QOL and letting you body dictate next steps and steps up in mg. This is a good approach. I wish more Dr's did this. Rather than cleanup/rectify carnage by taking a Tazmanian devil approach to treatment an all encompassing and more compassionate yet effective approach sounds much better than a hail mary I hope you can handle it mindset. Venzenio, go in there like King Leonidas and the 300 and get rid of those cancer cells. But don't do such a good job that you hurt the wrong things. Re-group 300 - target cancer, not good stuff - understand?!
Snowdrop - in your pocket still from scans. We're in all there clamoring away. We've all decided to tell cancer trying to mess with you to take a fleet enema and jump off a cliff. Hoping results back swiftly and "unremarkable".
Jsniffs - congrats on stable!! Woo hoo!
Your tip about the citrus will have me checking labels a bit more, might explain alot of things - little SE going on. Thank you for checking in and congrats again on stable mable! Sunshine99 - I've been borrowing your phrase when anxiety is rough some days. I just give myself a peptalk "Tarp your load lady!" - works
I'm glad you mentioned the 'prinkles' SE - I have that too. prairiesea - I've been saying it, Hotel California, you can never leave
How's Verzenio going? Are you doing it as a monotherapy or in combo? I hope its treating you well and gives you a long long run Your always, ALWAYS welcome here. Once a dancer, always a dancer Aprilgirl - you have to be around same cycle as me now - 25 or 26? Look at us! It feels like only yesterday and I was taking my first pill. We've become veterans! Whoa! Aprilgirl is guilty of getting to think of Paul Rudd dancing while in the machine too
Spookie - skyline chili making went well. I made enough to have for a few days and then I froze the rest for later. It turned out really well and cocoa was definitely not forgotten - spaghetti - chili- cheese- onions filled by bowl but no oyster crackers - I guess that sacrilege can be forgiven - but not the cocoa - no substitutions there
Cakes - how is sleeping going? I have to admit sleeping and anxiety are a bit of a problem again. Might have to dig into the natural remedy bag for some aid tho lately I've just been tolerating the wee morning tossing and turning til I settle enough to sleep. How is you sleep protocol going, working? You know what would be fun about bone scans (your smiling at your last one gave me the idea) is if they let us do a "Just for fun" pose at the end - with a single digit salute to the cancer for good measure - shocking the radiologists reading the scans would be fun - I think we should explore this addition to our radiology file
. Candy - how is Lymparza Lindy going? I think you mentioned about a slight dose reduction? Is that helping? Do you get to peek if its working soon? Wishing you all the best and for reduced side effects, definitely hope your feeling better than you were.
Dancemom - "no change" is good. Being able to 'stop' or 'pause' the cancer is considered the holy grail of things to hear - very good thing. You may yet have shrinkage in subsequent scans, but "no change" - good, very good. Welcome to the thread
When I couldn't get on to bc.org during my usual day to update MIL how i'm doing I complained I couldn't log on and I wanted to update everyone so no one worried because I worry if I don't see or hear from someone in awhile. She said "Their like your family" I said "Yeah, they are, I need them." I love all of you, as one who says those words very sparingly because for me they mean something and are sacred and not easily tossed around - I'm a blessed lady to be loved and say I love so many women who make everyday more bearable. *Hugs*
This counts as dancing too...so if all you can do is this below (I'm guilty of this some days) its all good - your still dancing
0 -
Love the bird. We had several birds, keets cockatiels conures. Fun pets, but messy. Couple of them learned to talk. I’m into the 4 legs pets now.
I’ve been grumpy since BCO has had problems. I need to check in several times daily make sure everything is ok.
So I made regular chili tonight, got cold(for here). Had a brain fart, put cinnamon in instead of chili powder. This is not skyline!!
0 -
Rabbit - You so eloquently put my thoughts into words…”Rather than cleanup/rectify carnage by taking a Tazmanian devil approach to treatment an all encompassing and more compassionate yet effective approach sounds much better than a hail mary I hope you can handle it mindset.“
And on that topic, I got an email today that I’m sharing below. I think this change in the FDA thinking is going to help a lot of us that just can’t hack the maximum dose of some of these drugs. Defining an optimal dose based on both efficacy and toxicity…Gosh, how novel.
0 -
rabbit , very encouraging. Thank you. They almost made it sound like an anomaly. I’m glad at this point they haven’t given up on the treatment bc I haven’t. I think it being my very cycle that it’s obvious some kinks have to be worked out. This is my second bout with SBP and I hope the last. My counts end up going haywire In Hospital and I think it’s the being here plus the crap food they serve. It just doesn’t agree with me. They are trying to see if they can isolate the bug so they can treat me with home IV therapy. That would be lovely. Days are long when you’re mainly by yourself all day. Because of the attack their wifi is down. So I’ve been reading a bunch and I did manage to download a couple of episodes of things on Netflix but I’m babying it incase I’m here until antibiotics are long. My BP is naturally low but sometimes being here all day mixed with the beta blocker dips it and they get concerned. So I was pumped fulla albumin. Last thing I need is to stay cause of that. But again , the diet here is not necessarily albumin healthy.
There’s a light at the end of this tunnel. Hopefully soon0 -
RK2020,
Great news on dosage issues. My one concern is that because apparently they will now identify alternate doses, clinical trials will take longer and that means a longer time for drugs to come to approval and market. I hope that isn't the case.
0 -
BevJen - Agree. I would think that the trials can be run concurrently and not consecutively.
BAP - This is a heck of a rough patch you’re going through. I hope the antibiotics do their thing quickly.Hugs to you.
0 -
Rabbit, I’m so sorry you had issues with getting your scans. Especially trying to deal with it while trying to keep the barium down. And I’m sorry that you had to go into your MO appointment blind. I’m sure it’s very anxiety inducing if you’re used to seeing the reports early. I usually don’t get to see my results before my MO calls me. I get my medical information through tricare online, which holds results usually for 4 business days. Every once in awhile I get it before the call/appointment and then I spend all my time looking up terms and reading medical abstracts. For me, I think that can be more anxiety inducing because I go down the rabbit hole. But I’m glad everything was stable! Having lived myself with 3 to 4 level pain for awhile due to injuries, I’m so sorry you don’t have any pain relief! I wish they could find something to help you. My pain is in my ribs so a lot of every day movements cause pain. I stopped going to my workout classes for now and am just trying gentle yoga and walking for now.
Anywho, I completely agree that you ladies are like an extension of my family. I find it so uplifting that everyone here is looking after each other. I’ve only been on a short while but I already get anxious when I don’t see some people for awhile. I come here to share both joy and pain with everyone so that no one is carrying too much themselves. Thank you all for listening and understanding!
Sending out happy thoughts!
0 -
Rabbit, with all you've been through/are going through, you are so thoughtful to think of me. My nausea has calmed quite a bit. I take a Pepcid AC every morning now before I eat, and I've definitely felt better. As far as how much I can eat, still not a ton, but nit having nausea helps. My thyroid is also off again, so switching my dosage again. I can't get the stupid thing to stay in check.
I'm sorry you had quite the experience with the nurse and then them trying to bill you more than the norm. Good for you for speaking up. I'm sure the not-so-nice nurse went home and gave what you said some thought, or at least I hope she did. I'm thinking of you as well, and I appreciate you so much. Hugs!
Hi to everyone else, and yay to stable scans. I've had my grandson for four nights, so my attention has been elsewhere.
0 -
Rabbit--wow, I'm so sorry that your scan had to have so many issues! You would think that the medical process could be a little more geared to easing the path of people who already working hard to deal with a difficult condition. I do relate to your sense of needing to train the technician.... I feel a bit like that about my MO, who made some stumbles in the course of my diagnosis, which, when I discovered that some of the other MO's I might deal with were actually worse, I decided to just point out and see if we could go on with better communication, attention to my tests and condition, and transparency. I actually think he has listened and gotten better....friends who knew of this history said "you are really training him in how to treat a patient." Which one naturally feels ambivalent about, wishing they could have had that training before. But if they do listen and get better....that's something.
Thanks also for your affirmation of my continuing in this group. Verzenio is going ok. I'm taking it with letrozole....my understanding is that Verzenio as a mono-therapy is mainly for those who have already been treated with AIs before. I was diagnosed denovo, so that's not the case. I remain on highest dose despite dips in wbc that in some cases have not been unlike what I had w/ Ibrance. Have figured out how to manage other SE's and am going on with my life. Lately ANC count, at least, is better, around 1.0 or a little lower. If it can stay there, I'm ok with sticking with the highest dose. MO thinks because of my extensive "bony disease" that my bone marrow is enough affected that any CDK4/6 inhibitor will take down my wbc, for now. And the alternatives he offered seemed to me like they would be less effective as a first line. I did ask, well, are we expecting enough improvement that eventually the bone marrow will get better and I won't be so immune compromised, and he said yes, just not right now. So, I'm willing to try.
But also encouraged by RK2020's news about the rethink on maximum tolerable dose. I do think this is rather ridiculous even while I also want enough of a dose to smack my extensive bone mets as hard as possible. There does need to be a recognition of the need for balance between treatment and a full engagement with the life we have, I think.
Hi and best wishes to all the other dancers.....
0
