Ibrance (Palbociclib)
Comments
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Thank you for sharing Bill Engval; I laughed so hard!! I did get my card and go to the dispensary. I tried smoking (practice) and coughed a bunch. While I am not a smoker, I was told that smoking will work faster and to be careful with edibles and such.
While it is legal I do feel like I am doing something wrong. I am just very hopeful that it helps with my next treatment.
MEandJax
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Cowgal - thank you for the positive thoughts!
Aprilgirl - thank you for these encouraging words. So glad to know that you noticed a difference being on Faslodex. I think it is significant that your doctor of Indian descent doesn't endorse tumeric supplements. So I am going to stop all the "extra" supplements and just take Calcium, D, C, zinc, magnesium/potassium, B-complex, and fish oil. No more tumeric supplements. And maybe stop the multi-vitamin, too. I do think vitamin C and zinc have kept me healthy these last 4 years with no colds or covid (knock on wood).
Simone - so interesting that the Naturopath also said no Curcumin supplements. Thank you for sharing that!
Katyblu - that is great news about neutraphil count; that's half the battle.
MKestrel - I hope your transition to Verzenio goes smoothly. I have heard great things about that med. A family member tried a couple of meds for her mbc, but verzenio and faslodex has gotten her to No convincing evidence of metastatic disease.
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AprilGirl - thank you for the post on supplements and drug interactions. I wish they were better understood, but nutrition and supplements seem to be poorly studies/understood. Most of the DRs seem to think they just make expensive pee. My MO suggests that I get what I need from food as much as possible rather than supplements. Tumeric was not on anyone's hit list to avoid, so I take supplements as well as using in food. Years ago I read in a runner's magazine that too much calcium supplements might cause heart issues for women, I don't think it said what was too much. At my wellness checkup, my primary said that biotin supplements might interefere with some lab tests for thyroid function, but did not suggest that I quit taking it then retest. https://ods.od.nih.gov/factsheets/Biotin-Consumer/
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PCPs aren’t that great with supplements either. Mine told me to take tumeric. I found out it interferes with Coumadin. Hmmm blood. clot, or tumeric. No brainer for me.
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I've been reading along and again how glad I am that you all are here, sharing your experiences with different meds, side effects, moods, etc. I learn more from you and share more details with you than anyone or anywhere else.
RK, are you done with radiation? Hope you're doing okay, those radiation side effects are no joke. I recall slathering mometasone and aquaphor all over my left chest for two months, wearing my husband's old baggy cotton tshirts, and I still didn't have any hair yet so I felt like I looked kind of like a cult member.
Spookiesmom, how are Spookies teeth? And yours? It does seem like things just keep happening, doesn't it.
Thinking of everyone with new-to-them treatments: KBL with Xeloda, Candy with Lynparza, MKestrel with Verzenio, Katyblu with Ibrance... on the one hand, it's good to have options, but on the other hand how do we plan our lives around unknown reactions, side effects, etc? My hair has decided to start falling out again, just this month, on cycle 8 of Ibrance. I still have hair but it is noticeably thinner. WHY now? I hate the unpredictability of our meds. Yes, I'm grateful for them too, but rats cats and bats.
Rabbit, thinking of you with your doc appointment and Zometa later this week, offering pocket duty and I can sing 80s tunes to you. Maybe you'd like to hear Love Is A Battlefield? Or Shout? Or Right By Your Side? I know every Duran Duran song, too. You said you were a poet before, and I would say you still are. I feel happy when I see you've posted something, whether it's coming from funkytown or not.
Aprilgirl, dreaming of those pumpkin rolls...glad you had a Treat Yo'self weekend!
Went ahead and got a CBD/THC tincture for sleep, which has done nothing for me yet because I took less than half of the recommended small starting dose, lol. Will see if a wee bit more does anything for me. If I end up posting weird stuff, well, point that out to me.
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SFcakes I hope the CBD finally relaxed you and you fell asleep. Insomnia is something I struggle with too.
I do love when I see Rabbit has posted something too. Always entertaining, witty, sarcastic - paints pictures with words and cracks me up.
Waving hello to all.
Tanya
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SF-Cakes, thank you so much. I got the first week down and am on my off week. So far it’s been good. I’m hoping it continues. If the combo of CBD/THC doesn’t help, try a CBD/CBN combo if you can find it. You won’t have the effects of THC, and it may help with the sleep.
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SFcakes, I hope sleep finds you quickly and comfortably! My NP just recommended trazadone for my insomnia. I’ll have to look into that and talk with with my clinical pharmacist to see if it would help and not interfere with anything else I’m taking. I’m so sorry about your hair though! These side effects are awful and unpredictable. With tamoxifen I had mood swings from deep depression to irrational anger, as well as most of the others. It would be nice if we could get some meds that have side effects like making us giggle or giving dreamless sleep.
RK, I used medicinal honey patches to soothe my skin during rads. They worked wonders!
Well I just got my second shot of Lupron and I start cycle 2 on Friday. So far, so good. My WBC came back up into normal range on my week off. I’m not having too many physical effects or side effects, most of my issues are all mental. I’m still just so angry and depressed and scared and hopeful. It’s a weird mix but I’m trying to take it in 6 hour chunks, getting through each portion of the day. So far today has good!
I’m thinking about y’all and hoping everyone is doing the best that can! Light hugs
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My poodle is terrified of thunderstorms. His vet gave him trazazone. He just gets real chilled, not drunk or extra sleepy. Hope it works the same for you.
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RK checking in…I completed my rads to c1-5, sacrum and both SI joints a week ago today. Surprisingly, I had very little issue with diarrhea (only towards the last days) and surprisingly, I DID have issues with lost taste buds. It's bad. In 2016 when I started AC I lost my buds and at first the awful taste in my mouth would wake me up. But some of the buds came back, the metallic taste waned and food was just bland. But I just ate a lot of zesty or sweet stuff. It worked for me. Not this time around. I can barely get food down. I eat because I know I need calories but gosh, the taste is awful. And my mouth is rancid 24/7. I can't even stand the taste of water and I know I'm dehydrated. I'm losing weight and I really couldn't afford to lose more then 2-3 lbs. Especially right before I start Verzenio!!! 💩 Speaking of Verzenio, I put off starting it for two reasons.
1-I have a PET scan tomorrow and I don't need any urgent bathroom breaks interfering with the test. It's rather soon after rads but I insisted because I want a baseline to see if Verzenio is working.2-I wanted to give my body some time to heal from the rads before bombarding it with a new drug. I'm really fatigued and my stomach can still act up. Since I'm not eating much, there really isn't much to poop out but it can happen.
3-I really wanted to go out for a nice meal before having to deal with Verzenio SE. Unfortunately my taste buds aren't cooperating so I guess that won't happen. Honestly, I LOVE food so this is a big deal as far as QOL is concerned.
Ok, so that's 3 reasons. I told my RO that I've got tough Polish skin. I tan really easily. I've never had a skin reaction from rads until last night. The skin on my tailbone just sloughed off and left raw skin underneath. I had to get a mirror to see what was going on but I have a very tan circle about the size of a quarter on my tailbone from the rads and about a dime sized piece of skin fell off. Well…I guess that part of my Polish skin never saw sunlight before and wasn't toughened up. Lol. This too shall pass.
I'm going to start Verzenio on Friday. No more excuses. This must happen. Im feeling a bit dramatic but I REALLY don't want to start a new drug. Any new drug. And certainly not one that has the potential to effect my eating. 😞 And if I lose any more weight, I'm going to start looking like a cancer patient. Good grief, I don't want that. Lol.
Hugs to all. Thank you for thinking of me.
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I have come to the conclusion that Gas is the universal language. Kinda like Mathematics. Its the same no matter how you cut it. Ha!
Beloved told me once every time he speaks with someone with cancer its like he's talking to me, they say the same things. I told him yeah, its all the same in that it all sucks, no other way to put it. He works with a lady who has advanced stomach cancer. She climbs up things and tarps them down like all the men. She amazes me. Beloved checks on her if he doesn't see her around for awhile and she asks about me when they talk. I ask about her a lot too.
I was thinking about RK's word "hooligans". There is this character in a musical/dance version of Cinderella that's pretty old ( I like older movies) called "The Glass Slipper" with Leslie Caron the ballet dancer. The fairy Godmother was played by a an odd but sweet lady who marched to her own drum (adored her character) and she had favorite words she liked the sound of "Pickle Relish" "Elbow" "Apple Dumpling" "Window Sil". I think my favorite words are: medulla oblongata (young frankenstein is guilty of introducing me to this word), pumpernickel, and lollygagging,
Lately I've been walking around like freaking frankenstein ("Don't look at me like I'm freaking Frankenstein- Dr Evil") - its stiffness in the joints and just up and down the back- I miss estrogen. I woke up a couple days ago real early in the morning unable to move my right leg much without it feeling like it wanted to snap (upper area of femur near the ball/hip area). I've had similar things happen except on the left side only. Didn't want weight on it. Felt strange. But after forcing myself to try to hobble around a bit and then resting most of the day whatever it was went away with only a dull ache there. My left side has done that several times between 2 scans and nothing was noted in that area other than the cancer they say hadn't changed. Concerned right side is doing this now. I thought to myself "Oh no, that Mustafa clip from Austin Powers I posted was a harbinger!". I've avoided using my rollator and sticks outside the home to prevent stares - people STARE at people using any kind of medical device, its embarrassing. I do however keep them in the car. Beloved has had to grab them at different points when out somewhere if my cancer knee gives me trouble etc. But really trying to avoid them, I use the grocery cart as a rollator, don't have to fight to push the cart anymore, ha!
Its scan time again. Scared. Multiple reasons but because I have this system of getting through them and if that doesn't go smoothly my anxiety amps up a bit. My system includes drinking a lot of decaf coffee to clear out my caboose. I get so nervous about the radiologist seeing Ibrance has me all stopped up or something, heaven forbid the radiologist sees crap in my colon. I dunno, I just have this thing, they see wayyyy to much of my insides, I'd like to keep my bodily functions off the film if possible. I just have visions of the radiologist calling others in "hey, check out this colon!" - one scan I forgot to do my 'cleanse' because things were busy outside cancer life and the whole time I kept thinking "hey, check out this colon!". Will know dates after tomorrows appt/infusion when we schedule them.I have had some weird boops or palpitations concerning the ticker, nothing that hasn't happened over the past yr. Making myself cough a bit seemed to 'fix it'. I keep the heart stuff discussions I have here. My mother in law reads my blog and beloved reads neither it nor here so, I'm just trying to keep some stuff to myself until its time to bring people up to speed. It keeps things less dramatic. I want as close to drama free living as possible. My anxiety goes up in response to others freaking out so, its better to keep lids closed til they need to be open. Heart stuff is still suspected based on blood and other symptoms, suspect prior chemo as cause but since I won't go to a cardiologist to confirm (anything thats broken is staying broken attitude) we just treat my MBC which is what I said I want. Limitations on dr's is my priority now. Anything to avoid saying my last name and date of birth an extra time is a good thing. Beloved has heard me say it in my sleep. Kidney function is down too from last yr I'm at 60/ish GFR now. I do not suggest people fluff stuff off like me. These are just my personal choices at this stage of the game. Also my BP that was low 117/64 and 117/60 with the same nurse 3 appts ago was high the following appt with a different nurse. What gives! That darn cuff wants to tear my arm off I swear, hurts how tight the thing gets and that's it being done manually, "Lets see if her arm pops off, Increase pressure!!". Lets see what it decides to be tomorrow.
Anyone want to do a little gig of glee the first page full of unused pinned threads are gone? Much easier to navigate and see active threads. Thank you Mods!
Pocket duty please ladies- Yes! let the 80's tunes blast. I think this is my dozenth time doing this set of scans. It gets harder to walk toward them, legs feel like jello, mind races while i try to focus on that voice telling me to "Hold your breath".."breathe"...I have plans to make chili, get me a pumpkin roll and light a candle (too warm for pellet stove) - a pretty pathetic substitute for a real fireside huddle with you all but it will remind me of all of you and that's what I need. Chili is for after each scan of course. Last thing I'd need to feel is like Harry did in Dumb and Dumber and that "gotta go" feeling from breaking the Ibrance dam. I particularly liked the little squeak and his little laugh at the end of his whole fiasco. Still puts me in stitches.
Kestrel - of course you can dance! You were dancing. The medicine was dancing. But you were like mismatched dance partners. Couldn't find rhythm together. So in comes a new dance partner. I've seen others do well on Verzenio when Ibrance doesn't work due to count issues.
Aprilgirl - how did the girl's trip go?! I bet you had a blast! No pomegranates on Ibrance? Shoot, did not know that.I like those arils on salads and stuff. I drink OJ for immune support. I knew about the grapefruit. Funny how everyone isn't just told the same across the board stuff on what to take and not to take with it, what to not eat or drink with it. Speaking of pomegranates.....
(PS, in clip above the professor was teaching a development psychology class and someone took a snippet out of the lesson. It's how to not teach kids to dislike/like something - still funny tho - people even made songs with it, lol)
Katy, Lemon, Anntop our Ibrance newbies, How's 1st cycle going?
KBL - glad to hear things are going good so far! woo hoo!
RK - It was good to read your update and that your all done. Woo!! Congrats on getting through that, so happy for you! I had taste bud issues for a bit during AC too but then also after I was done with the T part. Zesty, sweet, everything else tasted awful. Understand that completely. I hope tastebuds come back for you soon. As a confessed foodie myself, its one of lifes little pleasures still. Lets hope Verzenio lets you eat and that you get to keep more in than out.
Glad I checked the thread so I could edit the part I wrote to you to be more current!Spookie - how are you enjoying your chair? Having to kick out any furbabies to sit down? Have they figured out how to turn on the heat and massage like mine have?
Cakes - my eyelashes fall out or thin out depending on the cycle - i have not heard anyone else having this issue yet. They grow back, but still. Will be putting on my warpaint as beloved likes to call it and when its mascara time its like "Oh, guess I'm skipping this step for awhile". Hoping the tinctures help with sleep. I agree, I learn more here than I ever would elsewhere, medical people can be not so forthcoming. Its safe for me to talk freely with you all no holds barred, i don't have to censor myself and you all get the unspoken. I find I really can't much anymore share with others unless they are in my position with Stage IV, there are just some things people can't understand unless they live this, its so much different than the fear of it happening.
Candy- hope the nausea and fatigue are at least letting up a little. Frustrating you can't find literature to help you with deciding on lowering the dose. Hope MO can help you with that tho I see challenge on changing up with the mg tabs you have. I could be wrong but there always seems to be a little wiggle room with the meds in alot of cases - taxol can be effective at half dose etc and verzenio is effective at lower doses as well as piqray. I'm wondering if just a little tick down could mean all the difference for you SE wise while still working for you. Hoping end of October you'll get some guidance from MO.
Jack5ie hasn't logged on since Aug 5th. Last heard from her privately in late June-ish. Worried.
Even if you don't post alot - please please checkin - we get worried if we don't see a name for awhile. Been a lot of loss lately and missing names. That worries me too.
Maybe I am a writer, I just wrote a book length post, holy cow! Takes me a full day on notepad to write what I want to say most times (writing on breastcancer.org signed in has had me loose stuff multiple times if I take too long to write so i avoid that by writing in notepad then copy pasting), hard to get thoughts out quickly, but it sure hasn't shortened things up words wise yet for me. I need a character limit on here.
Mini rant: Someone I know asked for prayer for the removal of their confirmed Lipoma. Someone I know asked for prayer for indigestion. Someone I know asked for prayer concerning their refrigerator. I'm all for prayer (Christian). But to me it should really be serious if your asking a whole group of people to pray for you- life and death serious, missing limb serious etc. It makes prayer trivial. Just my thoughts.
Note: Anyone having issues with getting their meds? I had a almost 2 week delay getting Exemestane generic for Aromasin. Last month my MO said I was the 4th person that day to tell her. She mentioned delays/supply issues with some IV and oral chemos. NicoleRod mentioned Abraxane supply issues today. I was on hold with the specialty pharmacy (Optum, formally Briova) for 2 hrs this last go around for reorder for Ibrance - normally its a 5 minute wait. WTH is going on!
I may be a bit quieter til scans are done and everything is back. Deep breaths, come on, you can do this, you a pro! On Cycle 24 currently 100mg (12 at 125mg, rest at 100mg) lets see if I get to stay on it. Love to you ladies!!
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Thank you, Rabbit. Well, you described my scans to a tee. The last six or so have said they can’t see my colon for the mess in there, and I’m going almost every day. What the hell? One even mentioned I was obstipated. I had to look that one up. I am at a loss. I’m not cleaning myself out for a scan when I don’t feel constipated, and I certainly know what it feels like. Lol
I’ve had multiple times where I’ve had to make numerous phone calls about my meds. One time I was so angry and asked for a supervisor. When she said, “I know how you feel,” I lost my shit and asked her if she was dying of cancer. Not my best moment. With mine it goes from my doc’s office to their pharmacy, who then has to go through my insurance specialty pharmacy, and with three places involved, it gets stuck.
In your pocket for your scan. Hugs.
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Rabbit, this is in response to your husband's co-worker who tarps things down. My DH and I were driving from San Diego to Bishop recently. It was night and along the way, there were those lighted highway signs (you know, like "Gusty Winds Ahead). This one just said, "Tarp Your Load".
For some reason we both just cracked up. Now when someone needs to calm down or "cool their jets", we say, "Dude, tarp your load!" Probably not so hilarious to anyone else, but that's our newest expression.
Thanks for the reminder and the laugh.
BTW, I just ordered my Ibrance refill through my insurance website. We'll see if if comes when it is supposed to. Haven't had a problem yet. I'm about to start cycle 18.
Carol
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Sunshine, I laughed out loud at "Dude, tarp your load"! That's hilarious and perfect. 😆
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Rabbit, singing this from your pocket! (My voice is nothing like the fabulous Annie Lennox, and I tend to make up words when I forget the actual lyrics...but hopefully you will have a chuckle)
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I’m doing ok, go out when I need to, content staying home. Had been out, came in, plopped In recliner. Massage was on. WTH? Kris likes to sleep in it, so I guess he somehow hit the control.
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I just took my first Ibrance pill 100 ml tonight. I had taken 2 weeks of Ibrance 125 and had to stop. Severe pain in side and blood in nose. Just curious if anyone has done well on Ibrance.
I’m pretty anxious to feel better and start doing things. I am still on crutches from femur rod surgery, but I am hoping to walk again0 -
Rabbit I’m here for pocket duty with all the great 80s one hit wonders!!!! We’ll do some Come on Eileen and some Africa, maybe throw in some 867-5309 and whip It! I’ll even wear some leg warmers and a sweat band 😂
So I just had my first cycle check in. My WBC were back up in normal levels, platelets were good, kidney and liver functions good. So today I get to start cycle 2 at 125mg. So far I feel pretty good physically. I don’t have as much endurance as I used to but I’m working on building it back up. Mentally is my issue. I just cycle up and down so much. But the last 2 days have been good so I’m going to hold onto that!
Happy thoughts to all
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Oh my gosh, I'm so in on the 80s tunes. I even have this corny little dance from high school when we blast some 867-5309. 😂💃🏼 Look in your pocket Rabbit. The gang's all there!! 😘
Katyblu- I'm glad Ibrance is treating you well. IMO you are doing better then many so keep up the good work and I can't wait for the day that you tell us it's working!
KBL - I personally love that you lost your shit and put that person in their place. You aren't going to hear me tell you to “tarp your load". Lol.
Positive - I wouldn't think that your pain or nose bleed are a side effect of taking one pill of Ibrance. If the pain is severe, have you called your MO? They should be told of any new severe pain.
I read my scan results last night. All in all, I'm happy. Areas radiated are less active and it's only been a week since 3 weeks of radiation was completed. Hopefully they will continue to die off. The nodes are resolved. The only area of concern is my T12 which was radiated last February. It's growing. In June my MO said the tiny spot that showed up was different then the spot radiated and on the opposite side of the vertebrae. Maybe Verzenio will kick its ass. 🤞🏻And I have a spot on my lung that the doc will probably want to watch. I'm not worried (yet) because it was described as a 1.8 cm thickening of the pleural with an SUV max of 1.3. In prior scans the radiologist remarked that what they saw was likely damage from breast radiation in 2016. Time will tell. So now I know where I stand and this morning I took my first Verzenio. Let's see where this roller coaster ride takes me.
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RK2020 - sending healing vibes for Verzenio!
Katyblu - so great to hear that you are doing well with Ibrance. As far as your mental state goes, I feel that it is equally important. I need to establish a regular meditating habit because it really helps me when I do meditate. But I need to make time every day. Also I am looking into Qigong - I have heard great things about it.
Rabbit - I totally agree about people asking for prayers for insignificant and sometimes ridiculous things. Some folks lack vision for the big picture.
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HI All, I am back from my girls getaway, had a fantastic time! It was only 5 days but every day was great.
Sunshine99 - OMG "tarp your load" will become my go - to phrase for "calm the f$%@ down" . It is perfect!
RRabbit - once again, you put into words what we are all feeling. It is also why I don't bother to talk about this stage IV reality with my "in real life" friends, except for 1 sister and 2 very close friends (one I was traveling with this week). In your pocket! It's crowded but I have Fannie Mae candy from Chicago and 80's tunes. Here comes the rain again by the Eurythmics is first up. I also love Chumbawamba Tub Thumping which is '90's but a good song for scans. Of course, anything by "The Cure" is appropriate....let's start with Love Cats.
KatyBlu - great news on your blood work! The emotional part is the hardest (and the waiting...for scan results, blood work, for possible side effects....the waiting for what if's can get to us). Hmmm...just like Tom Petty sang in the 80's. Knowing I have others on here who get it and will help me "tarp my load" makes the experience easier.
RK2020 - great news! I am so happy you have such good results just a week out from the rads being completed. Your new oncologist sounds fantastic. Let's see Verzenio do it's magic.
Positive2strong - hang in there! I have had 2 dose reductions on Ibrance and will be starting cycle 23 or 24 at the end of the month. With the exception of low white blood counts or neutrophils (which is why my dose was lowered) I have found Ibrance and Fulvestrant both pretty easy to tolerate. My hope is that you will, too and you will start feeling better as you regain strengh from your femur surgery.
KBL - very few know how we feel and good for you for keeping it real with the customer service rep!
SF-Cakes - I am still laughing about your t-shirt design and truly want to order one but I rarely wear t-shirts.....might have to order one anyways! I hope the CBD is helping you sleep.
Love to all of you!
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Well ladies, I'm going to have to ask for extended duty things are happening a bit later in the month than I thought scan wise. I fell asleep when I got home from my MO appt/Zometa yesterday, I was just knocked out. Spent 2 hrs there at my center between the appt, blood, zometa and going between 3 floors trying to arrange my scans - everyone was out of sorts yesterday more than usual. Infusion nurses in the back all kept saying "What a day". Infusion room was the quietest I've seen in awhile now. Only 2 other people back there with me. One just finished their chemo and was told to remember to come back for their shot (so they got some tough stuff- brought back memories a bit- I did half my AC chemo in the month of October -in 2018) and the other was just getting their 30 min chemo infusion started. This scan set is going to be unique to my others ones because I'll be walking into it partially blind possibly.
The soonest bone scan I can get is Oct 29th with injection at 9:45am and then the soonest CT I can get is Nov 3rd at 1pm. My next MO appt is the following day Nov 4th. I normally fill out a medical reIease with medical records to have the reports emailed to me once they are read/signed off on. I will probably be able to see my bone scan prior to my appointment but the CT scan is up in the air not sure if it will be read soon enough for it to be emailed to be prior to MO appt. Also I'm not sure if I can get to the medical records dept near the oncology dept and get a printed out copy prior to seeing MO, but it looks like I'm going to have to hustle to make that happen. I can't go in partially blind, not comfortable with that. This is the closest I've had an MO appt to scans. Normally there is like a 2 week space between when I finish scans and when I see her but not this time. No real time to formulate questions if I have any. I'll have to do a cliff's note look over of the CT scan if I can get ahold of it beforehand. What a mess.
I feel a bit like I've been hit with a truck today thanks to Zometa, Nothing quite feels like that beat all over feeling. I will be better by tomorrow and much better by Sunday.
Lets all put on some extremely heavy makeup, set ourselves up behind some keyboards and guitars, pretend like we're playing them and sway as Robert Palmer sets the scene and tells us that we might as well face it we're addicted to....Gas.
PS: will be back to check in/reply to everybody - on my 2nd nap today, geesh.
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I hear ya. Did the nuclear bone scan on a Tuesday, MO on Thursday. Ortho ordered it , knew I wouldn’t see him for a few weeks. Also knew if I did light up, he’d shove me to mo anyway. So MO staff did some magik and got the results. Nothing. So relieved
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Spookiesmom - great news/scan results! Such a relief!
RRabbit - rest up, girl! We will be in your pockets until your scans at the end of the month and your MO appt. At least the zometa and blood work are behind you today. Edited to add: will apply heaps of purple eye shadow for the 80's tunes
that and, of course big hair was my look.SF-Cakes - I think you mentioned hair loss ? I am sorry about that . I lost about 1/3 of my hair so far and it probably started coming out after 6 months on Ibrance . It did start growing back but not all of it, so I have weird 6 inches of new growth.
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I really need to come in this thread more than once a day. I read to catch up and then forget what I want to respond. I may have to start taking notes.
Thank you, RK2020 and Aprilgirl1. I may tell my husband to tell me to tarp my load when I get snippy. Lol. Poor guy. I can be fine one minute and raise up about ten octaves if something happens to get me upset. I’m not sure if it’s the new meds or what. I also have to tell him to get off a subject if I feel overwhelmed because we’ve been talking about something for too long. My brain goes on overload, and I have to tell him I need a break. So weird.
Glad your scans were good, RK2020.
Aprilgirl1, I’m so glad you had a good trip. I bet now that it’s over, it feels like it whizzed by.
Katyblu, glad the meds are not causing too much trouble. 125 is tough. I hope you get to continue with good blood numbers.
Rabbit, sorry so long for your scans. Hopefully the time will go fast. Good for you for listening to your body and resting.
Spookiesmom, so happy scan went well.
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Positive,
Two things: blood in your nose (kind of like a slow nose bleed) is not an uncommon side effect of Ibrance. If you read through the literature, you will see the write up on that.
After your femur surgery, you should be asking your surgeon to provide a referral to physical therapy. It will help tremendously with improving your walking. It's a lot of hard work, but it helps a lot.
Good luck.
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KBL - I’m with you girl. I start reading the thread and I think about what I want to say and by the time I’m caught up, I’m like “what was I going to say?” 🤦♀️
Rabbit - Your Robert Palmer lyrics crack me up. Rest up and rest assured that I’ll be hanging out in your pocket on both your scan days. Good luck with getting your results. I don’t like hearing them first from the doc. I have a tendency to get that deer in the headlights look and then think of a million questions on my way home.
Spookiestmom - 👍 yahoo
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To Positive and all the other newbies - wishing you clear sailing on Ibrance! I'm more than four years in (finishing Cycle 55, for those who count that way), on 100mg + Letrozole since the beginning. My only side effects at this point are some minor fatigue, and brain fog (my kids call me Dory - from Finding Nemo - because my short term memory is shot). I was diagnosed Stage 4 de novo, with one visible met on my spine, which resolved by my first follow-up scan. Just wanted to pop in to say that this drug really can work miracles, and even though I dread scan days terribly (waiting for that other shoe to drop - every 6-7 months now), I'm just happily living my life. Heading to Florida next week, to become a snowbird again (from NJ), and we've already booked an 8-day cruise in January. It's been fun, planning excursions and counting down the days. I miss real vacations!
I send prayers and positive vibes to everyone having difficulties, and even though I read here all the time, I hesitate to post sometimes because I don't have a lot to add to the discussions besides letting you know that positive outcomes, and good quality of life, are possible. We used to talk a lot about the Ibrance dance (it was metaphorical, and had nothing to do with bodily functions, LOL), and I often say that if I knew then what I know now, I would have happily danced around the kitchen the day I took my first capsule, instead of sobbing on the floor. So I'll end with what has become my mantra, thanks to Lee Ann Womack: When you get the choice to sit it out or dance, I hope you dance!!
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ciaci- Thanks for popping in. I always like to hear from someone we haven't heard from in awhile and it's always good to be reminded of success stories. Miracles do happen. Keep on dancing!
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Ciaci: It was nice to have read your post as my first one of the day. In addition, I noticed you mentioned having 6 month scans, which made me feel better after meeting my MO yesterday. MO suggested we can move to 6 month scans (previously was on a 4 month schedule) now that I have 2 years under my belt with Ibrance. Last night I obsessed a little if this was the right decision , yeah I have an extra 2 months w/out scan anxiety but then think well is is better to catch progression early. Then again, does 2 more months from 4-6 really make more of a difference.
After the scan discussion, MO said in the future that my Xgeva can be 6 months (she mentioned a different name) rather then my 3 month injection. I did have my Xgeva injection yesterday. So this decision can be kicked to the curb for now.
It was a lot to absorb in one session. I hope everyone has a nice weekend. Beautiful fall foliage in PA .
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