Ibrance (Palbociclib)
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When you guys see a PA, do you know ahead of time? I've been seeing my oncologist for four years now, and I love her. When I had my follow-up appt after my PET scan in January, I saw her PA. No notice or anything, my chart still said Dr. D'Andrea, and they confirmed my appointment with Dr. D'Andrea. When she walked in and introduced herself, I was confused. I asked why I wasn't seeing my regular doctor, and she said, "She isn't in today." I assumed she was ill, or couldn't get to NJ from NY (thad snowed the night before, and the appointment was really early) but they offered no explanation, and I felt funny asking. I had no real complaint against the PA, she just wasn't personable at all, and I'm used to my oncologist's upbeat style.
So I had my PET scan yesterday, and go on Thursday for blood work and scan results, theoretically with Dr. D'Andrea. I'm so much more nervous this time than ever before. I think that's normal - as time goes on, I fear the inevitable even more. And I lost a few online friends recently in facebook groups, which makes me feel even more vulnerable. So I really want it to be Dr. D'Andrea giving me the results; so far, the portal says the appointment is with her. I'm just afraid if the PA walks in the room, I'll cry.
I'm thinking of calling on Thursday morning to ask who will be there; at least if I know ahead of time, I can prepare myself and try to minimize my disappointment. Or can I request that it be my doctor instead of the PA? Not sure what I'm "allowed" to do...
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I either see my MO or her NP. I know in advance who I'm going to see. The MO is much more in demand, and she's told me point blank that I should tell the scheduler that I want to see her, and to be persistent about it. If it's just for something small, I will tolerate seeing the NP, but if it's something bigger, or if I'm feeling anxious, I can be pretty persistent about getting in with that MO. If the scheduler resists, then I usually will shoot the MO a note and she will get involved and get me scheduled with her.
I don't think there are any rules about this. I feel that I go to a big center so that I can see the docs who I want to see. I'm not going here to see the NP. It's my body and my disease, and so I think it's fine to ask to see the MO.
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Aprilgirl-That sounds very upsetting. I like my PA but I don't want her making serious medical decisions without consulting the MO. They simply do not have the same level of education and training. Years ago, I went to an ENT and saw the PA-she completely misdiagnosed me. The ENT kindly corrected her in front of me. I'm glad your situation was straightened out but it is exhausting to have to advocate like that.
Ciaci-I usually don't know who I will see. It generally says the MO but sometimes I see the PA instead. If I am stable and have no issues, that is fine with me, but if I have progression, I want to see the MO.
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Yes, I did know I was seeing a PA and that my onc's regular PA is out on maternity leave. Which I support and I really like my onc's regular PA. I think this also was "triggering" for lack of a better word because this same top rated NCI cancer institute ignored my MANY requests for scans due to symptoms I was having, and that delayed my dx of stage IV. A different PA in the wellness center was a complete gatekeeper to any oncologists. My oncologist from 2008 retired and I was transferred to their wellness clinic at 10 years from stage 1 dx due to "low risk of recurrence". HA.
I see my MO every other time and after a scan. To be honest, I LOVE my regular PA, she is much more personable than the MO but the MO is smart as heck and just fine. Together they are a great team.
Spookiesmom - it's scary to have a PA change meds . Good for you to stay on the dose and talk to the doctor.
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Cakes, you had me cracking up as much as you did when you said one time you were hanging onto the refrigerator sliding to the floor while laughing with your DH about some particularly expressive toots.
We need a gas mascot. I vote Bullfrog tho Cakes might have a point with the Geese
I used to switch off and on between PA and MO when going through early stage treatments etc. Now at IV she only wants me to see her, which I appreciate, our MO's know us the best, its best to see the MO as much as you can, if not mostly to avoid not getting answers to things or an out of touch PA who usurps the MO without checking. I wish we had more control of these things. My oncology wing is SLAMMED all the time. I remember first stepping in there for my first ever appt, the first thing that struck me was how many cancer patients there were, every seat taken, with people standing around waiting as well. It's like that in cardiology too. Sad stuff.
Spookie- that picture shows me the furry ones rule the roost there, they do here too. When we got our cat Violet as a teeny kitten a couple weeks after my IV dx. The livingroom floor became quickly loaded with toys, enough she needed her own basket. Our cat Vera who is a special needs cat (we adopted her as a kitten) with vision issues wasn't interested in toys so i've not had to deal with cat toy landmines around the house before. I have to be careful where I step these days, have looked like a newborn baby dear way too many times because i forgot to look down to see a cat mermaid toy with feathers on it tempting to launch me like a lawn dart.
April, I hear you. Once burned it can be hard to forget, especially a sun spot level burn where serious symptoms were ignored delaying dx and you had to fight to be heard. I still say bravo for sticking up for yourself with the PA and making clear what you want/wanted.
KBL- congrats on 2 years, that's awesome!
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SF-cake, I needed that laugh!
April, hhhh that NP has no business to give you medical advice. Thankfully your MO made a note on your chart. For low ANC, I think Candy and couple of ladies use 5 days on/ 2 days off (instead of 21/7), just another way to keep ibrance. emotional swing is here too, we have too much to do beside this unwelcome disease. scheduling appointments/ different tests/ manage to be nice with careless staff, and being on top of test results etc etc etc are too exhausting marathon. I can relate when you had to wait for your injections so long....
I go to an NCI designated teaching hospital, always there are many residents hanging around and eager to see patients. Imagine being stage 4 with those unique conditions I have, high demand!!! couple of times happened to me that a non-physician-but-dreamer tried to deliver a lecture, I sharply replied/ challenged the NP (or whoever) “so now you gave me medical advice?/ would you mind if I check with my MO or your supervisor about your insights?” So now no residents without my permission would see me and NP of neuro oncologist only performs physical examination before my doctor steps in!Ciaci, as a stage 4 you have right to ask to see your MO, and refuse to see an NP. I wouldn’t be shy to insist to see MO.
Candy, I guess you are seeing your doctors today? I hope they are able to give you a good plan.
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Hello fellow dancers,
I have an annual mammogram Aug 9, and scheduled for first Moderna vaccine directly after. I have to get vaccinated in a clinical setting because I am high risk for anaphylaxis. I will be on day two of my Ibrance cycle, and will see my MO the next day and get my Zometa infusion. Any of you get the vaccine while taking Ibrance? Should I expect extra flu-like symptoms having the vaccine the day before my Zometa?
Fairy Godmother
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This PA did something similar last year. I called Humana, what can I do? Ask to see Dr R only, or ask to see different PA. Did, he wouldn’t go for that. He got a NP. Tried that. Nope. This PA has more experience. So at the yearly in January he walked in. I smiled and said Hi stranger, long time no see. My MO knows I don’t like her, my. Cardiologist is going to find out I don’t like her.
If his office wasn’t a mile from my house, and if I didn’t require frequent blood sticks because of Coumadin, I’d change. And I do like doc, when I see him.
At almost 12 yo, Spookie still plays with toys. Kris had a deprived puppy hood, but at 11 is learning. He leaves squeak toys in my bed. Pywacket the cat has his, and plays with Spookie toys too.
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Hey FGodmother - I had my first AstraZeneca after two weeks off Ibrance (I held an extra week due to a suspected sinus infection that could very well have been Covid given how widespread it was at the time). I had been advised to get my vaccine either at the very end of my week off or the very start of my next cycle. I can't answer re: the Zometa but you may as well be prepared for 24 to 36 hours of flu symptoms with the vaccine and schedule a buffer accordingly - and if it doesn't happen then great!
(to be fair, AZ really laid out a lot of people with that first dose and if I'd had covid then I really shouldn't have had it when I did)0 -
Fairy, I had my second Pfizer shot the morning of my Zometa infusion. No problems with either. I do occasionally run a slight fever after the Zometa infusion, but this time I was fine.
It happened to be my last "off" day of Ibrance, which I resumed the next day. My ANC the day before the infusion was 1.11, which is pretty good for me. I'm usually below 1 when I finish my 21-day cycle.
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FGodmother - I got the Pfizer vaccine first week of an Ibrance cycle, oncologist was not concerned. Hope your vaccine is easy to tolerate and you have no side effects/reaction.
Spookiesmom - your pets sound delightful! Spookie at 12 sounds like he is full of spunk, Kris is catching on:)
Snow-drop - yep, these big cancer places are BIG and crowded. My onc won't do the 5 on/2 off week schedule but I am happy with starting Ibrance at .80 or above anc since I have done well on it.
Candy - check in when you have time. Thinking of you often!
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Thank you, Rabbit.
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Thank you, Sondra, Sunshine, and Aprilgirl. I love when folks with experience can answer questions for others. I feel a lot better about getting the vaccine on day two of Ibrance and getting Zometa the following day. Love to all my MBC sisters💞
Fairy Godmother
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Ciaci, I pop in and read this thread ocassionally and hope you don't mind my answering your Onc vs PA question. First, I want to say I'm sorry to hear about the loss of several online friends of yours.
Imo, yes, you can request to see your oncologist and not the PA. You could even call tomorrow rather than wait till Thursday to find out if you will be seeing the onc. I know you have lots of experience talking on the phone from working with your husband many years, so be your charming self. I always start by saying, “hellooo, this is Mrs M, who am I speaking with?...Jane? Hi Jane, I have an appt tomorrow w/Dr. D and was wondering if you could tell me or how I could find out if I will see her rather than the PA." Explain how last time you were in you saw the PA, but this time you'll be getting scan results and are having some anxiety and have lots of questions and prefer to go over all the information with the Dr.
We or our insurance pays big bucks for us to see the specialist, that specialist is billing you for seeing her, so keep that in mind. We are paying to get the expert medical opinion of the oncologist so why shouldn’t we request the onc if that’s where the money is going. Also, I am sure people at the office get asked many times who exactly will be conducting the appt., it is probably a routine question for them. Nothing out of the ordinary. If they happen to say the PA will be there, ask if you’d be able to have the dr.
In a way it seems odd that the PA or anyone else didn’t offer a reason for the switch in January, but it could be a professional thing where they are respecting their superior's privacy by not sharing a personal reason why the she wasn't there.
Best of luck. I’m sending all good wishes that your scan is good news!
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Ciaci - in your pocket for scans. I am sorry you have lost some online friends recently, that adds to the scananxiety for sure. Hope you can feel us in your corner!
I agree with Divine that you absolutely can call ahead, see who is scheduled and request your Doctor give you the news. For what it is worth, my cancer place does switch off but they make sure the Oncologist is the one giving me scan results (which ocassionally means I see my oncologist two months in a row).
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I vote for the bullfrog as the Ibrance Gas Mascot.
April, thank you for sharing your experience with feeling exhausted and tearful with what can feel like constant self advocacy. I'm sorry you had to deal with another medical staff questioning the agreement you have with your MO, good grief. And switching medications is not straightforward, it comes with a lot of emotional weight attached, I think good doctors understand that it has a different meaning for those of us with MBC.
I really would not want to talk with anyone other than my MO about my treatment and general well being, and support anyone requesting/insisting on seeing their regular doctor. I love snow-drop's retort to the "non-physician-but-dreamer"! I rarely "see" my MO, we have monthly phone visits. That started during COVID, (well, my cancer started during COVID) and it's pretty convenient since I'm still working. I can request an office visit at any time, and have when I thought I felt something weird near my scar. I go into the clinic monthly for the lupron shot and blood work, and all the nurses know me since that's the same clinic where I took my husband for infusions. It's nice because they always ask about him.
I second the congratulations for KBL! I appreciate your posts about ILC very much, too.
Ciaci, hoping for good news from your PET scan. ❤
After work today, I am tackling the removal of a big ugly bush in the backyard, which I realized brings up emotions for me (seriously, a bush!!) Shortly before I was diagnosed, I was trying to trim it with hedge clippers, and I sort of fell over, exhausted. I remember laying on the grass thinking, huh, I think something's going on with me. So that bush and all its negative connotations is outta here!
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Hi everyone - I am supposed to start Ibrance next week. My MO originally told me to start with the standard 125 mg, then we compromised and decided to start with 100 mg (I don't weigh a ton, a lot of people end up decreasing the standard dose, and I'm a less is more type person).
Question for the group - My Ibrance was delivered today and was for 125 mg. *sigh* Would others recommend jumping through hoops to get what I actually asked for (100 mg) or just suck it up and see how the standard dose works?
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Spookie, Milo (13), Gray stripe is Violet (2) and the furball is Vera (5). This is what my bed looks like most mornings.
I have to say I'm not liking quiet Candy, Candy's not quiet. Hoping everything is ok. Thinking of you Candy.
Sitting here taking a break from trying to catch up on housework. Laundry never ends around here. Beloveds job is physical and dirty so our washing machine is the heart of the home. Its interesting to read others having emotional reactions to things, even seemingly silly things, but things that were the starting point of life changing things. Same reactions here. Food, music, commercials, something somebody says, a certain piece of clothing, even how I physically feel can be tied to a flashback good or bad. I purged absolutely everything pink I owned shortly after 2nd diagnosis. Donated every breast cancer related gift, book, scarf etc. Threw out my post surgery button downs, head scarves, my one free cheapie wig I had gotten. It felt good to purge. I wanted to start over, whatever that meant and that meant eliminating triggers as best I could. It felt pretty darn good, one thing I had any bit of control over in this whole mess. So Cakes, proceed with the desolation and carnage of hedgery. May it be therapeutic and extremely satisfying!
Spent yesterday morning arguing for Ibrance refills. Have cycle 21 ready to go but no refills on standby, normally I try to remember to ask for them at MO visit but I forgot this time for the first time so went through patient portal instead. Specialty pharmacy texted me there was a delay in my prescription request, then was told there was a denial for refills. Had to call MO office and her nurse was on it and called them back herself and straightened it out. Good to go again. Felt my life flash before my eyes a bit but was ok when all was fixed. Everything about this disease is emotional from how we physically feel to dose reductions or medication changes, it all hits straight to the gut or to the mind. Wish those who take care of us remembered that sometimes.
PS, thank you all for putting up with me, its appreciated. I'm not really great at dealing with all this stuff and even a couple years into this I still find it challenging.
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That’s my bed in winter, now everyone sleeps where they are cool. I don’t wear pink in October. Can look at my non existent chest understand why. My hair is very thin, very short. I get called sir a lot. Way too hot for hats and wigs. That will put me in tears.
But we aren’t pushing up daisies yet so that’s a good thing.
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Rabbit- love that pic of your adorable kitties and pup!
Jsniffs- just from a purely logistical point, I’m not sure if exchanging the 125mg Ibrance for 100mg is worth the hassle. I say try the high dose and see how it goes. Also, if you have side effects on it, and you drop down to 100 mg, you might appreciate the decreased side effects of the lower dose more than if you didn’t know what 125mg did to you. Perspective- in summary. I hope it goes well for you. FWIW, I’m an average size person and after an adjustment period, I am handling 125mg well.
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Candy, how are you? Please do check in as soon as you can
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SF Cakes, thank you. After talking with doc’s office, I am going to stay on Letrozole. They were going to switch me to Anastrozole, but I’m too chicken to switch because I’ve been stable. I’ll wait.
Rabbit, love the fur babies. So cute.
Jsniffs, I would go ahead and try the 125. I did it for one month and then was automatically put down to 75.
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Jsniffs - I asked MO on Monday about what Ibrance triggers off, if its height/weight related (Im quite tall and solid) and she said its not like chemo in that manner and it doesn't impact dosing. Give the 125 a try, you may be surprised!
Candy did mention she had some family stuff going on on top of sorting out appointments and everything else, so I do hope its a function of dealing with a lot in real life right now rather than anything worse. Still, a bit concerning!
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Thanks everyone for the ideas/feedback on starting with 125 mg Ibrance!
KBL - I think I remember you writing something about joint pain on Letrozole recently. I was on it for over 2 years, I didn't have major issues with joint pain...but I did have some joint stiffness. What seemed to help me and prevent things from getting worse was walking daily, some form of qigong/tai chi/yoga, and regular massage (I see someone who specializes in acupressure and oncology massage). I have found the most benefit when I can get the massage on a weekly basis, but I can't always get to it because of time and money (I'm lucky if I go monthly). The massage also helps with sleep, which I have struggled with on all these drugs.
Oh, and the massage person also does moxibustion (applying heat to acupuncture points), which can help with white blood cell and neutrophil counts. It helped while was on chemo years ago, and it might be helpful on Ibrance.
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Jsniffs, yes, my doctor gave me a choice to switch to Anastrozole or stay on the Letrozole. I decided to stay on the Letrozole. Too chicken to switch when I’m stable. I do walk every day, and I just set back up my Total Gym and have started light training again to maybe strengthen the muscles around the joints. I have an orthopedic appointment on Monday as well to make sure the pain I feel is not something more serious. I don’t think it is, but better to be safe than sorry.
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Dug out that bad news bush, came back inside and sobbed in the shower. Grateful to be alive, but also miss when I used to feel kind of cute. You know, back when I had two breasts, long thick hair, strong nails, could get up from a crouch without groaning...so just a typical MBC kind of day today! Hate feeling sorry for myself, but rats, cats, and bats. Maybe I'll put on one of the hilariously bad wigs I bought last year and dance/toot around the living room for my husband, to lighten this place up some.
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My Ibrance gas lately has been more like a chain saw or a small motor bike. They are not short little toots, but long drawn out like a small engine. I’m glad the dog and my husband haven’t abandoned me over all the noise, lol
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SFCakes woot woot you got that bush out!!! cathartic. Dancing around with the wig on sounds like fun and will definitely lighten your mood.
Candy checked in with Mel on the thread My husband my life etc. She's caring for her sister who is ill and tired at the end of the day. But she is ok no news about medical stuff.
Tanya
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So I got my PET scan results this morning - from my actual oncologist, no PA - and scan is still clear!! No evidence of disease, no FDG uptake, no sign of metastasis.
Thanks for the good thoughts - exactly four years on Ibrance/letrozole now. Doc says next summer we'll decide if I want to keep taking the Ibrance; apparently, at five years, some make the decision to just stay on the AI. I already told her I'm not stopping it! Unless I start having unpleasant side effects, there's no reason for me to want to be off of Ibrance. She laughed and said that's a conversation to have after my next two clear scans.
I'm grateful.
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Tanya thanks for the update on Candy.
Candy bless you, caring your sister on top of everything, speedy recovery for your sister. Take care of yourself as well (((hugs)))
Ciaci, wonderful news, congratulations 🎉🍾 please check in often
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