Ibrance (Palbociclib)
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SunshineDaydream, Just for comparison on frequency of MO visits, I too see my MO every three months and recently have been having MRIs at that schedule too. I’m at about 2.5 years and feel ok with it. My first MO (who retired at my 1.5 year mark) used to schedule me for every other month, but she alternated seeing me with her NP if I agreed. Scans then were every 4 months, usually CTs. For both the first and current docs we talked about the scan results at the visit following the scan. I found the Impressions section pretty self-explanatory, then we discussed further at the visit. I’ve never had a Pet scan, just CTs and MRIs so maybe their results are simpler to read. I think all of your concerns are valid. It’s possible frequency is determined by our treatments, as your MO told you, and this may come from insurance guidelines. Maybe not, just guessing. Hopefully you get more responses to see how others are scheduled.
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This is actually helpful. My MO has been out for over a month. My last visit was a video visit and she was out for the one before that. I'll see her for another video visit next week. I was afraid she had COVID or something, but it turns out she gave birth to her little girt prematurely. I got to see a picture of her baby at our list video visit and she is precious. She (my MO) told me that if her baby comes home in October, she'll take off 8 weeks, but will have someone else see me.
I do have regular blood work and am getting my Zometa infusions each month and I can message her office with any questions of concerns. They're very responsive there, but it's reassuring to know that others are not necessarily being seen every month. I'm about 18 months out from my Stage IV diagnosis.
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Sunshine Daydream, like KatyBlu, Sunshine99 and Rosie24, I don't see my oncologist every month. I see my MO on my appt that falls right after a scan, so quarterly at this point. Otherwise, the appts alternate between my MO and her NP whose is assigned to my MO and her patients. I have a blood draw, see Dr or NP for a quick review of the month and my bloodwork results (which usually I have already seen in MyChart), they give me a breast exam which is RIDICULOUS because my recurrence was never in my breast tissue, they do a lot of neck/lymph node checking and then I leave to get my fulvestrant injection. I LOVE my nurse practioner - she has been out since April on maternity leave and I really missed her. I have a baby gift for her and see her on Monday!
Go Kale, happy you are feeling better. I would say I had some fatigue in the beginning but am used to the Faslodex/Ibrance now.
SF Cakes -and Katyblu - I hear you with the lying awake at night with....tick...tock.. how much time.... fear that wallops us about plans for "next year" . It has kept me (and probably most of us) up at night, or at least kept me from falling asleep - especially the first 6 months of this reality. I started to use the Calm app on my phone to play "soundscapes". which helps me fall asleep. I live near Seattle and we had a drought of all things this summer so my favorite is Skylight Rain! haha. I also like Ocean sounds. It really helps.
SunshineDaydream - OMG I sell residential real estate and the market is nuts. Congratulations, sounds like you are in contract! Yes - Sellers market means that the Sellers don't feel like they have to make repairs - ugh. Congrats on your eldest starting kindergarten - I do know what you mean about time moving fast. How wonderful for you to be in your new home for the holidays this year. Great news on your petscan results, too!
KatyBlu - I will have to check out your podcast for night time! Beer fest sounds fun - we may go to an Octoberfest tomorrow after I show a few houses.
Tinkerbell - I love apple festivals, too! Any of these fall festivals - outdoors, fun food and /or beer!
B-A-P - have a great weekend and we are all sending you love and energy that the I/F is working!
Prost!
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Moth thanks for sharing the article.
many success and inspirational stories that I love to read, many great questions from new members, welcome new dancers.
Rabbit your posts always make me smile:)April, nice fall decoration 👍
I take ibrance around 6pm, and I never touch pills, rolling it in the bottle cap and from there put it in my mouth, lazy way! I did not know about sweat shirts. Fatigue starts around mid week 2 til week 3 sometimes it is high sometimes it is tolerable, I have low RBC as well. Light 20 minutes walking can help manage some side effects.
Ref MO visit, the first MO liked monthly visits, I should say I was in bad shape at the beginning, for my current MO it is like whenever she likes, no rules for visit/ scans!! her nurse reads the reports, and she is the one who responds MO’s emails, gatekeeper... If this helps you I had a long 7/5 months gap of no examination, I only had telehealth (zoom visit) during that time, I was told that the MO was unable to see patients because of the virus-spreading.. ha! but my other doctors were able to see me! Those unorganized visits stress me out? Oh yes, can I change her way? absolutely not, but I can rely on her knowledge, she has been in practice over 40 years.
Hello candy Tanya Spookie KBL SFCake RK Bev Sondra ciaci Katrose sunshand everyone
Pat how are you?
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I was on sort of monthly MO checks when I first started, although WHICH MO (or other - registrar or some other type of cancer doctor) was always up in the air. Then Covid hit and it was telephone only for three minutes IF they called and I said F this and switched to a private MO who I see monthly for about 15 to 20 mins (although I can email my assigned nurse or MO at any time).
However, I have to say that Ive just gone two months due to vacations and I am wondering if we can maybe cut visits back to every other month (except to come in for blood) because not having a visit meant cancer was put in the back of my mind. Probably something to discuss on Monday at our chat. I think at the start, though, I did prefer monthly to make sure everything was in the right direction and for reassurance especially as that primary keeps changing my breast shape. Current MO is more than happy to do a physical exam if warranted. But Sunshine, its up to you - if you feel her approach to patient management isn't working for your needs, perhaps shop around? I'm really glad I did and found a wonderful onc and it eliminated quite a bit of stress/confusion/frustration out of my cancer pathway.
Re: pumpkin roll - I have NEVER made one of these yet you all seem to have! I do have a can of puree in the cupboard, and because its about $4 a can when you can get it on import here, I have three pie pumpkins on order in the grocery delivery this week so I can make my own. Usually I like a pumpkin bread, but I think Im going to attempt a roll, they look so good!
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Katyblu, I definitely get that. I ended up doing a blog on CaringBridge so I didn't have people asking what was going on. This way, they can read it or not if they want to. I just post once a month.
Hi, Snow-Drop. Thank you for the shoutout.
I have a question. I am now on Xeloda, but since Faslodex is sometimes given with Ibrance, maybe you can answer my question. I’ve had two injections so far, getting my third Monday. When I asked about warming them up under my arm, she told me they don’t have to be anymore because they don’t have to be refrigerated any longer. I want to see if anyone else gets nonrefrigerated Faslodex.
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KBL,
I'm more interested in the fact that you are getting faslodex along with xeloda. Isn't that an unusual combination? Does your doctor plan to continue with both of these drugs?
How are you doing with the xeloda? I am still having issues with it (not to jump into this thread) and will be discussing again with my MO next Tuesday at our Telehealth visit.
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BevJen, I will be on both. So far the Xeloda is doing okay. Tomorrow is the end of my second full week. Had one spot on my foot that opened up, but it wasn't bad enough where I couldn't walk. Other than that, a little nausea. Now you've got me thinking that's not normal. Lol. I will look to see if others are on this combo.
Below is a conclusion from a 2014 Phase II clinical trial.
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Sunshine Daydream,
I usually see my MO once a month when on treatment and every three months when I wasn't. There was a time I was NED for almost 2 years so I only saw her after my scans and bloodwork. Now it appears I'll be having visits with her before every new cycle of Ibrance. I do have a sticky history as of late which I think requires a little more attention from them. If you're not happy with the visits I would bring it up with them or shop around. Where I live, that's a little difficult as we only have one small cancer centre but I have a nurse navigator that can help me get a hold of her if I need to. My MO will either call me back or if it's non important , have a nurse call me back with her answer.
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hello all. I started with monthly visits and Montly zometa. I get monthly bloodwork but only see doctor once every 3 months. Also zometa is reduced to once every three months after a year.
Tany
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Thank you all for the responses. It seems that once every 3 months isn’t that unusual. I have some other concerns with the quality of care I am receiving from my MO, so I do think I will ask the center to transfer me to a new doctor but I am going to wait until after my upcoming PET scan as I don’t know if this change would complicate that.
Have a nice weekend everyone
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Ladies - I have to admit my chemo brain is getting worse. After AC+T in 2016 if I hadn't already planned to retire, I wouldn't have been able to work in my IT project management role. My brain lost it. And I never got it back. And lately, it's gotten REALLY bad. So when I don't call you out by name or forget to respond, don't take offense. It's because I'm reading this thread in my pool and can't take notes. Lol.
But Aprilgirl, I remember your post because your pumpkin roll belongs in a foodie magazine. I assure you that if I attempted to make one, it would not look like yours!
Regarding melatonin - I tried low dose, high dose (cant remember the mg any longer) and a mid dose. It did nothelp me much. Actually the low dose helped the most. I only take it about onc every other month nowadays - only when my sleep deprivation is impacting my mental health. I am much more emotional when I'm sleep deprived.
MO visits - I've had 3 MOs during my MBC treatments. One had me coming monthly but after initial visit, pawned me off on her NP. I wasn't impressed with her NP and honestly felt I did a better job at interpreting my results so I asked to be scheduled with the MO. They obliged but my MO was a train wreck too so she's no longer my MO. That MO was a breast cancer specialist from an NCI designated cancer center. I had another generalist MO who took the time to actually bring up my last two PETs on his computer and he showed me areas of concern, how he interprets them (in greater detail then the radiology report) and we bantered about treatment options until we both felt comfortable with next steps. Once he felt I was stable, he asked if it was ok to schedule my next appointment with his NP. I said no so I continued to see him monthly. Then I moved. My latest MO is a generalist with a special interest in BC. Our relationship is new but so far she sees me monthly. She already knows I'm a pretty educated patient so when I went to see her after my PET, she just said “I'm sure you've read the report. What questions do you have?" Unlike my first MO, I get the sense that she comes to the party well informed on the specifics and nuances of ME.
Candy - Glad you posted I've been thinking about you a lot. DEFINITELY let us know when your next scan is scheduled. I want to make sure I'm in your pocket
Rabbit - You asked how I'm doing. I gave myself 1.5 weeks to heal from radiation to 4 areas before starting the big V. My fatigue had not yet lifted, I was losing weight due to having to force feed myself, and I would have sporadic bouts of diarrhea from radiation and then I started Verzenio. Hmmm. Call me a baby but I had only taken it for 4 days when I had my MO visit and told her it was too much. It was not the QOL I wanted. On the way there my hubby asked what I was going to say. I said “I'd rather LIVE a shorter amount of time then EXIST forever". He agreed. My MO listened and we immediately came up with a plan to take a break and heal while the lowest dose is on order. My fatigue has now lifted, tummy still has periodic bouts but I feel SO much better. I spent the entire day boating yesterday so I'm currently LIVING! Blood is the best it's been since I got on this merry go round. I start my low dose on Tuesday and see my MO in 2 weeks. If I'm doing well, we can slowly up the dose until I cry uncle. I think that's a plan I can live with. And my GFs bee sting is healing well lol
Love to all.
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RK2020 lol at the healing 🐝 bee sting.
Happy that you’re living not just existing. There’s a huge difference.
Tany
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RK2020 - living not just existing is the GOAL FOR SURE! Thanks for articulating that so well. Im sorry that you had to go from rads to Verzenio so quickly - good for you to advocate for a lower dose and less side effects! Brilliant.
SunshineDaydream - sounds like a good plan to get the scans and then perhaps change docs. Our lives are in their hands so to speak and we deserve to get top notch care.
To anyone interested in baking a pumpkin roll, they are not hard. Just a jellyroll pan lined with parchment paper or a silpat mat, don't over bake it and roll it when it's very warm to get the shape. You unroll and frost after it cools. They freeze really well. One 15 oz can of pumpkin puree makes 2 rolls:). I try to keep a couple in my freezer so I can gift them. Sometimes my son eats it right out of the freezer (if I label them, he leaves them alone!).
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I need to try this pumpkin roll thing, maybe next weekend. Get that can of puree out of my cupboard and if it makes two I can send one to my buddy down the street. Any particular recipe you would recommend?
(sorry for the thread derail!)
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And to get it back on track,
Just out of chat with MO and results of my scan Saturday showed very slight primary growth (a matter of a few millimeters) and a new very small lymph node next to the main one. Otherwise bones look awesome. Will now be put forward for local treatment at MDT this week, surgeon call and exam u/s likely next week and then we go from there.
I think I am... OK this this? I'm not surprised as I'd flagged node pain two months ago and had an episode of searing pain to that nipple when I was away and noticed last week it had turned in more. I imagine had I had my scan on time it may have been too small to catch but the delay due to trip and here we are.
Most of you are aware as to how annoyed I have been by having to live with this primary to date due to the changing shape and such sunken nipple. It will almost be a relief to get this done, so I suppose its for the best. As long as the drugs are holding the mets stable elsewhere then let's do what needs to be done locally.
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SondraF - I’m glad you are getting some clarity and moving forward. It has to be frustrating to live with your primary. Hugs.
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Sondra F: The literature goes back and forth removing the primary tumor. I’m a strong advocate of the same. I hope the surgeon will agree. Have a few recent case studies handy in the event the surgeon is not in favor of the same. From a mental standpoint this will do you a world of good. I recall how unsettling this was for you to have the primary tumor. Good luck with your consultation. Keep us posted
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Sondra - Hope you can get the surgery if it's causing you pain.
After 19 cycles at 125 mg, I'm finally dropping down to 100! My TMs rose a bit this cycle, but overall has been trending down.
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SondraF, I hope that you can get your primary tumor and the node surgery now. It's good that the bones look clear and you can stay on current treatment.
Recipe for Pumpkin Roll is below:)
I had my very early oncology appt with my favorite Nurse practitioner. Just the bloodwork, which was good - anc above 1.0, fulvestrant injections and now back home and back to work. I am on 75 mg of Ibrance and my bloodwork has been consistently good on this dose. Thankful for this!
SerenityStat, happy that you are doing well on Ibrance, too!
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Thanks aprilgirl - do you know what size jelly roll pan? Im not sure my oven could take a standard size US one similar to what my mom uses for her jelly rolls, but I wondering if I just use enough batter on the one that fits in my oven, even if its a bit smaller.
Thanks also to everyone re:my update. Had a moment of being upset and frustrated last night because this news came like almost 2 years to the day exactly of being told they wouldn't operate! And its coming at a busy time of holiday season, trying to get a work promotion/move on, backdrop of rising covid cases and limited hospital space and I really just wish someone could have cut this off in April when I had the ooph. I was finally getting some core definition back too. But my main worry is if this is the start of Ibrance starting to fail and well, I guess we will see. MO said she had a few ladies in a similar situation last year and they had the surgery and have continued on ok.
Counts were low too, so one more month at 100 and then we agreed to dose reduce to 75. I would rather not but with the amount of illness flying around here at the moment I would rather be safe than sorry.
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I’m on my second week of ibrance and it’s going fairly well. I do notice extra grassiness and having “to go” more frequently. It’s not always bad movements but it’s getting quite annoying. Seems to happen after I eat but again, not always loose. Does this ever ease as our bodies get used to it or something I have to deal with every cycle ?
It isn’t enough to want to stop or lower the dose but annoying all the same
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B-A-P - Yes, I have extra gas and had similar bathroom issues when I started. I don't know if it was from Ibrance or radiation because those were started at about the same time. I don't remember when, but the bathroom issues finally resolved. It probably took a few weeks. I still have extra gas, but it isn't too bad now. I have no serious complaints about Ibrance now. I hope you feel better soon and able to do all of your regular activities.
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B-A-P - I had a plethora of SE on Ibrance 125 but it left my bowels alone. There are, however, plenty of women who suffer with gas. Oooooh Rabbit…come out, come out wherever you are! Toot toot
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Yes, Rabbit where are you? You can tell her better than we ever could 🤣🤣
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LOL now I’m intrigued !
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I have a video appointment with my MO this morning. I'm going to ask about the tingling/neuropathy I have. I'm noticing it more lately. Even in my face. It's more annoying than painful.
I have to ask her about some other sort of worrisome stuff. I'll post when I know something - even if she tells me that its nothing.
Happy Tuesday everyone. (Sheesh, I just realized that I didn't take my Ibrance or Arimidex yet this morning.)
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BAP - Did someone say Gas?
Yes Ibrance is known to cause that little side effect and I unbeknownst to myself seemed to have appointed myself Ambassador of Gas, taking hold of the mantle to transfer this acquired knowledge to the 4 winds.... of the earth. The only way I feel I can adequately demonstrate the frequency as well as the strength and length of a Ibrance fart is for you to take a peek at exhibit A and possibly Exhibit B which provides a more encompassing view of the Ibrance constipation dam breaking and the sputtering chainsaw gas accompaniment. In colonoscopies the legendary farts can be attributed to being pumped full of gas to 'see things better inside' - Ibrance seems to just fill us to this level naturally
Now that we are all sqeaky clean inside now on to other matters I realized I have something in common with ya'll, I listen to something before going to sleep/trying to go to sleep too- mostly 80's or oldies, things that make me feel good or help me deal with my emotions - in a way its like therapy. I don't know but I seem to pay attention to words more closely lately...last night I was listening to the song "Never Surrender" "Just a little more time
Is all we're asking for
'Cause just a little more time
Could open closing doors
Just a little uncertainty
Can bring you down"I thought to myself "Oh your speaking to me Corey....you've been though some rough crap haven't ya Corey...I feel you". Mr Mister's "Welcome to the real world" album was my chemo album. Yes's "90125" has been my go to album lately. Trivia - the lead singer for Yes sang the ending credits song in the movie "Legend" in a collaboration with Tangerine Dream (love them!)
Beloved came home the other day and I was sniffing and tearing up a box of kleenex. "Whatcha doin?" He asked. "Whatcha ya watchin?" "The Stand" (the older miniseries) I said...he laughed and said whatcha watchin' that for, don't ya think you could watch something a little less heavy? I mean you watch ER sometimes before bed and you wonder why you're having trouble sleeping ya goof!" I guess I should lighten up my viewing line up while in funkytown.
I do want to recommend a "all day" movie. "Storm of the Century" - you can watch it on youtube for free. Stephen King himself tweeted out the youtube link to it not too long ago. He helped on the screenplay. Its like 4/5 hours long so, its a slow build story rather than action packed wham bam thank you mam. Probably one of the best made for tv adaptions of one of his stories, with Tim Curry's "IT" being right up there (there is no other "IT" imo).
Spookie, yep really! I grew up right on the Ohio border and spent alot of time throughout my childhood in the state and thus was introduced to that wonderful concoction of tasty deliciousness I definitely won't forget the cocoa! I ordered my Ibrance and was on hold quite a bit again but not the 2 hours I was the month before. New automated message now plays while I wait "Due to current circumstances, you may experience longer than normal wait times". I ordered last friday, they can't ship it to me until wednesday. We'll see how things continue to go going forward.
RK, I hear ya on never being the same after AC+T chemo cognitively. Something changed afterwards. It keeps getting worse. It shows up mostly now in one on one conversations or trying to concentrate. I just veer off way too much tryig to talk to people or I'm stuck and just find myself quoting a famous line "You know the thing" because I just can't remember what I was going to say or the word I was going to say to describe something. Lately I've been better on paper...it just kinda ebbs and flos on how I'm going to do day to day or week to week so I totally get what your describing. Its frustrating and truthfully a bit scary, It feels like your loosing yourself. I'm really glad you took that break to heal from rads before trying to start again on a kinder dose of Verzenio. I like your plan of attack to start low and inch up rather than inch down. "I'd rather LIVE a shorter amount of time then EXIST forever" <-----a million thumbs up to this comment, I think we all feel this way too. But lets get down to the nitty gritty and say how happy we are to hear your GF's update that the bee sting is on the mend, there we all heave a collective sigh of relief, lol
Aprilgirl's pumpkin roll looks like a still shot in Good Housekeeping or one of my Allrecipe mag's. I don't think I can attempt this, even tho I've grown alot as a cook and can make chili that doesn't burn my beloved's bottom anymore. I am getting myself a store bought one and will have to pretend it's one of her's- a way of keeping her and all you ladies close to me while having scans. Will have my homemade skyline-esque chili and my roll and entertain myself with chili amplified Ibrance post each scan coming up
April, I hope your having your best year yet in the real estate market lady! Sondra - Congrats on Scans and that the primary is going to be given the heave ho outta there soon. It would annoy me too to still have it, I'm glad local treatment is a go now, lets get that sucker outta there! I agree with Tinkerbell the literature goes back and forth but if the patient wants it out, they should respect this, its not much to ask considering all we go through.
Sunshine, Let us know what MO says about the tingling and the worrisome stuff going on, in your pocket!
Candy - your most welcome
I miss you around these parts so just thought I'd inquire. Understood, we are always here. Sunshinedaydream - welcome to the thread!!
Cakes - yeah, I hear ya. Telling yourself to quiet your thoughts seems to have the opposite effect sometimes, harder you try, worse it gets. I looked down and sometimes miss my left breast. I'll run my hand over the area, sometimes cry about it. Totally lopsided but don't wear a prosthetic to avoid the Picasso look in public or demonstrate the magic of absorbency with one of those fluffy falsies. So me and Uni-tat just fly solo
I'm used to it, but I'm not, you know? Flexible MO's are awesome, glad she worked with you so you can enjoy the holidays. I love your toot story "setting off illegal firecrackers" lmao So the next time you land in funkytown or crabbyland (this place exists!) and you want to have a little fun just say this....
They will never know what level of seismic activity you will produce, like grab a piece of furniture level or what, I just tell my beloved to call me Admiral Boom.
Sorry if I missed anyone, I'll get ya next round, I promise
Hugs!
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Oh my gosh Rabbit, you are a HOOT! Your creativity, sense of humor and videos made me laugh and laughter is the BEST medicine. So for that, I thank you. You make a fine Ambassador of Gas
And you may want to consider putting a seat belt on your toilet just in case your Skyline-esque chili joins forces with Ibrance.
And I’m going to talk my husband into watching Storm if the Century. “It” is my favorite creepy movie
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LOL, Rabbit I’m relating to the hippo right now. I don’t have the constipation, quite the opposite. And the gas. Geeze Louise , every other minute my husband is like “is that YOU?” Sure is lover. Just another factor in this breast cancer business that makes me so *desirable*. You know, along with the awkward hair regrowth, menopause at 33, twiggy body but ascites , and now.. gas lol. All I can do is laugh that this is real life. Lo
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