Ibrance (Palbociclib)
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Thanks KBL I will sleep better tonight.
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I'm new here. I started Ibrance on June 26th and I have questions that I'm sure have been covered here multiple times but at 754 pages and counting I doubt I'll ever be able to read all the posts, many of which don't cover topics that I need to know about. Probably I should ask my oncologist but getting through to her is almost impossible. For example I called last Friday about my follow-up appointment and when they hadn't called me back called about noon today. A scheduler called me back and said it was her "hospital" day and they "probably" would call me tomorrow. Topics I'm interested in right now include my ongoing indigestion, new muscle soreness, ongoing fatigue, and so on. I'd like to be able to do a computer search on these topics or maybe there are sub-groups that I'm not aware of.
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Hello Pennythepest! I know this is a group you never wanted to join, but we're a great group for support. I'm fairly new to stage IV but am learning VERY quickly thanks in part to these ladies. I know how frustrating it can be when you can't get a quick response from your doctor. If you complete your profile, it will help us You can list your current drugs, location of mets etc.
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Great news Rosie! Just checking in after spending a good couple of hours catching up on posts. I see we have more newbies, welcome and know that for many of us the reassuring presence and knowledge of people here is invaluable. If you have questions, someone will likely have had some experience and we have all been new at some point!
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Irsreyes, I'm so glad. I know those tumor markers can make us anxious, but unless they go up for me three months in a row, I'm not going to worry about them. I also have the 15-3 and CEA tested monthly, and they bounce up and down each month. I haven't had one that's steadily gone up yet month after month.
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Hi, Pennythepest. As RK2020 said, it would help if we knew your diagnosis. There is also a Search button to look up posts about different topics. Sometimes I find just what I'm looking for and other times I don't.
Are you taking Letrozole as well?
Have you had an endoscopy for your indigestion?
If you're on 125 mg of Ibrance, that could be where the fatigue is coming from.
I'll wait to hear back before I overwhelm you with questions. I'm sorry you have to be here. I remember one year ago being in your same position of just coming on to this board. The ladies here are super supportive.
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Rosie, yaaaaaaay! I'm thrilled! (And I'll also compliment you on your good memory -- yes indeed last week they thought my wild blood readings were from my starting the I3C supplement ... and then the opinion shifted to Ibrance. Bummer!)
AprilGirl, thank you for your good wishes!
Irsreyes, if my current tumor markers were an accurate reflection of my MBC I'd be long gone!
Candy, of dear Candy, how did it go?!?
Hugs, Penny
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Rosie24– so happy for you! Woot Woot.
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Congrats Rosie!
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Hi Penny. I was also wondering what they determine d the cause of your high counts.
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First, Rosie, congrats!!!!
Ok... here we go...Long post coming...
Travel-- I asked my Pastor (he is retired) to ride with me since this was a new route for me (I wanted to do some non-interstate roads for part of the trip, easier 2 lane highway situation). Added 20 minutes to trip, but oh well. But we did get a little turned around (lost) and had to pull over 2 different times and ask for directions to get back on the road we wanted. Good roads and light traffic, but, wow, I am not used to the travel, so I am exhausted from the trip. Concern #1 for the future.
Ok.. so the appointment... The nurse put me in a room and had me undress from the waist up and get in gown, but then the doc (x2 docs, I will explain in a sec) never assessed me. So I could have kept my clothes on. No biggie, I guess. But mild concern #2 that no physical assessment from docs.
The first doc comes in and says she is a "fellow" and wanted to hear my story. After the whole story, she says she will come back with the doc I had the appt scheduled with. Told story for the second time. Hum??
Probably is toxicity to Ibrance. But wonder if it could be a bone marrow problem--beginning of spread to marrow. But RBC and platelets are ok, so probably not that. Filgrastim use is up to each MO. Some may want to give it with CDK's, some may not. So up to current MO if they want to order it. They were not going to say anything against my MO for ordering it. They would advise to hold Ibrance if ANC less than 900 on off week for an additional week. If we see that I am having to hold multiple times and thus not getting the full benefit of Ibrance, OR if I would start developing infections from the low counts, then we would HAVE to stop Ibrance. They don't know about lateral move to another CDK 4/6, not usually done. Would probably move from CDK's to PARP or test for PIC3CA and see if that is possibility.
Good thing--- They have a tumor board and she is going to discuss my case at this weeks' meeting and see if we can tweek my Ibrance schedule. Either on 5 days/ off 2 days OR on 3 weeks/ off 2 weeks. But she wants to run it past the tumor board. I told her I want to get the most mileage from Ibrance before moving on, so I REALLY want to tweek schedule and stay on Ibrance.
Question about transferring care to them--- If I was doing good, she would want to see me every 3 months for MO appt and get scans at their facility. Right now, with neutropenia issues, she would want to see me monthly for appt. I can get labs done locally and send to them. But, biggie here, I would have to get monthly Lupron shot with them, not local. Concern #3 So we are talking at least monthly travel for the shot.
I did ask about how I love to read and learn and would that be offensive to them. She said that it is good that I want to know about my care. She has a patient that told her about something they read. She had not heard of it. She researched it and ended up treating that patient with their recommendation. I don't think it was breast cancer----Concern #4 So I guess she sees all cancer types, not just breast.
I don't know. There is good and bad points about everything I guess. I have a lot to consider and think thru.
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Candy, glad you made it there and back ok. You got a lot of info, and you must be a good note taker or have an excellent memory. As you said, you have to think about everything. When you’ve rested up and absorbed their responses, I’d be interested in how you feel about the MO herself. The monthly drive sounds like a lot to me but you’ll eventually decide if it’s worth doing. Hope you can get some sleep with all that’s probably onyour mind.
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Thanks to all who celebrated with me. I’m happy till the next scan!!
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Rosie24 - great news! Woot Woot!
RRabbit - in your pocket, scan this week?
Candy, well done! You got a lot of info. It will be interesting to see what their tumor board has to say.
pennythepest, welcome to the Ibrance group. As RK said, I am sorry you are here but you will find great support on this thread.
lrsreyes, I agree with the others - sorry about your tooth but that is probably the reason your markers went up a bit. Keep us posted!
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So more thinking to do, but I did get some sleep.
I did forget to mention that the 2nd MO (the one I had appt with) did comment that oncology is an "art" and not just following protocols, and that sometimes you need to get "creative". She was discussing the change in Ibrance scheduling. Shetland mentioned about being an "art" on here. And that is along the lines of my thinking. So I felt good that she and I seem to be on the same wavelength. She also said if I am looking for an academic center, then she thinks I need to come there. And, Yes, that is what I am looking for.
I do wonder if I would see a "fellow" or partner when I go to appts and not necessarily see her. I really would want to be "her" patient.
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Rosie, woo hoo!!
Candy, it sounds like you had a great appt and you took down really good notes, it seems you like her, enough to switch? I'm happy she mentioned key buzz words and things important to you, that's a good sign, a sign your dealing with someone who will artfully craft a tailorized approach to you and treatment.
April, yep, CT Scan tomorrow at 8:30am and then the 2 part bone scan on friday starting at 10:15am. I keep replaying it's been 6 months since the last set, my 3 month delayed another 3 months because of the pandemic. I was okay with staying away and not scanning for awhile, ignorance is bliss kinda thing. But I just finished cycle 8 of Ibrance. Its definitely been long enough to know for sure it's working, so that is amplifying scanxiety for me.
My MO goes on vacation the week that would be my monthly visit and thus I pushed my monthly visit back with her 1 week. A refreshed MO might make for a better appt next go around thus my appt with her again isn't until August 12th. I will be asking after each scan that a note be put on my chart I want a copy of the final report mailed to me. That way no waiting for me to know and I can meltdown good or bad and formulate thoughts on my own, gather myself for next appt. I'm pondering switching MOs after next appt to someone else in the group I saw once when she was at a conference last yr. Was trying to stick it out with 1 MO, but I've been feeling trust was broken a bit last appt and with the whole Ibrance fiasco I had not too long ago. Just things I'm contemplating and rolling around in my head.
Welcome to the newbies and love to you ladies!
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Candy - You sure do have some pondering to do. All in all, it sounds like the trip was worth it even if you choose to stay local. And your experience is super helpful to me because, as you know, I’m interested in changing my MO at Moffitt. And like you, I want to be seen by the MO. My Moffitt MO handed me off to her APRN licketysplit. That’s not what I want.
Yesterday, I picked the brain of someone on another site who goes to an MO locally but does consults with Mayo in Rochester. Her big thing was that she wants more then one radiologist reading her scans so her concern is a bit different then ours Anyway, she asks for a consult at least once a year. Now that she has been doing this for 3 and has an established relationship, she can just go in the portal and get a virtual consult. They pull up her scans and have their radiologist read them. Again, she has a different concern but maybe we can gleam from her experience to create a better fit for ourselves. She said that her onc’s talk and share records. Good luck with your decision!0 -
Rabbit- In your pocket for your scans. Sounds like a good plan for your appt--refreshed MO. And getting scan results so you can formulate your questions for that appt. I understand about your thoughts of changing MO's in your group. That progression fiasco was nuts.
I am going to see what the tumor board has to say about me. And I am going to ask again about doing my monthly injections local so I don't have to travel monthly. Every 3 month travel for scans and MO appt sounds doable. But monthly is a bit much. I did like her--first impression. But hard to really know what she is like from 1 visit. How would she react to ___ when it comes up. I just do not know enough about her yet. Wish I could have 2 MO's--her primary decision maker and local MO for convenience sake. Guess it doesn't really work that way. Esp since travel MO is only 2 hours away, not States away.
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RK2020- Yeah that is another question to consider-- would I see MO or a fellow or NP/PA. Can I request to see the MO? I need to find out.
And I do wonder about co-managing. But then you run into if there are 2 different views on how to treat something. Who decides? That can be a sticky situation. Seems 1 needs to lead.
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This is for pennythepest-but-you're-not-a-pest, no one would expect you to read all 700+ pages - besides, the early info has changed so much! For example, most of the time, back then, if people's counts went low, there was no tweaking, they just had to stop!
And so many people join all the time, you're better off not trying to get answers from before, anyway. So many people on here are ready and willing to help with any concerns! Know that anything you could possibly be feeling, whether physically or emotionally, has been felt before.
My area of expertise, if I may say so, is muscle problems in patients also taking statins for cholesterol. Yes, it's a limited specialty, but I lived it and fixed it! I was blaming the Ibrance/Letrozole combo, and it got so bad I couldn't walk without a cane. Even then, my legs hurt constantly. My husband said it was my cholesterol med (he's a pharmacist), but I had taken it for years with no issues. Well, we researched it, and Ibrance is known to increase the effects of the statin (in my case, Lipitor). I reduced my dose by half - only taking it every other day - and the pains went away within a week or two. I tossed the cane, and have no issues at all anymore, and my cholesterol is hovering around 160, which is great.
Sorry you have to be here, but it's a great forum!
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Candy - yes, I agree that managing differing opinions can be a sticky wicket and something that might give me extra anxiety. In this women’s case, she had an incident where her local MO (from a well known hospital in Milwaukee) wanted to change treatments because they saw progression @ 18 months. She said she wanted some time to think about it and then went about getting a second opinion from Mayo who saw things differently. Mayo said to wait and see what the next scan shows. That was 2 years ago. I’m not sure how she handled informing her local MO that she wanted to wait 3 months. Did she do it? Or was it the Mayo MO that called her local MO? Gosh, who would ever think getting care could be this difficult. I envy those that found the right MO from the get go.
By the way ladies, if anyone knows a good MO out of Moffitt Cancer Center in Tampa or the Naples area, let me know. I’m planning my MO strategy for when I go south this fall.
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Candy - my medical oncologist (breast cancer only) is at a top rated academic hospital, Seattle Cancer Care Alliance - part of Fred Hutch and Univ. of Washington. Because of this, I do have that situation where a fellow meets with me from time to time first. They always ask me if it's ok and I usually say yes. In addition, my MO works with 1 Oncology Nurse Practicioner and my monthly appts alternate between the NP and the MO . I am getting petscans every 3 months so always see my MO after my petscans.
Interestingly, my NP is much "warmer" compared to my MO but my MO is super smart and I feel very confident with them as a team. Oncology is science and art and I think my doctor has that combo.
Edited to add: Ciaci - I still cant believe how you were walking with a cane and you and your husband researched the drug interactions and resolved your issues. AMAZING. So thankful for all of you!
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Candy, my MO has a NP and I see one of them every other month. MO always asks if I’m ok with seeing “Katherine” next time and I say yes. I take it that means I could also say I’d prefer not to. I’ve found the NP very helpful and thorough. I’m curious how often my new MO will schedule me and whether she has a NP.
April and Rabbit, thanks. 😊
PennyPest (not really), I hope your indigestion, muscle soreness, and fatigue level out as your body adjusts to Ibrance. Hopefully you can connect with your MO soon. For me the indigestion I had early on was helped with small snacks like a granola bar and more water in the day. Not sure if this would help you. I had some queasiness mid mornings and it did help. Fatigue is still an issue for me. My MO asks about it and so far I say that it’s manageable. I’m not sure if you’re on Letrozole with the Ibrance but that can have its own side effects that you may see. Please stick around and let us know how you’re doing.
Ciaci, thanks for the statin reminder. I’m thinking about the every other day experiment.
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Penny--- I also am new to Ibrance, just finished my first cycle. I have had gerd/heart burn for a long time and mainly under control with Famotidine. I noticed right away after starting the Ibrance that it is worse again (at night). Maybe ask about taking a med to help with it.
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RK- TanjaDijmala and Booboo are both in the Tampa area, and I think Boo switched to an onc earlier this year who she is very happy with. You may want to PM them (they are typically in Mel's living room thread in the other Stage IV section)
Candy - why does the Lupron shot, of all things, need to happen at the far away MO? That is just bizarre. That and bloods can easily be handled by a trained nurse, why is this an issue? Is it the cost of the injection or?
I get that MOs want to keep things streamlined and let you go 'live your life', but I think its gone a bit far here. I haven't spoken to an MO since February, and I don't have my next chat with anyone until August because the drugs are working so I got pushed to two month consults. I keep getting shunted to the 'registrars' who are actual doctors in the oncology department, but I don't know what their role is. Its bothering me enough that once we get housing locked down in the next week or two Ill be looking to switch hospitals and use my insurance so I see the same MO every month for the same amount of time. I never have enough time to ask all my questions, and I still need someone to look at my lower left leg IN PERSON (I think its a strained Achilles but I don't know). Think Ill go start with the GP for the leg and then ask about how to get a referral to the other hospital.
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Sondra- The way I understand it is they want the ordering doc for the Lupron to be at the facility that it is administered. Yes, the nurse gives it. But the doc orders the med and then the nurse administers it.
I am going to ask again if I can do shot locally and just travel for the scans (they want scans on their machines and with their rads reading them) and the MO appts. That would be better.
So you haven't seen MO in 6 months?? Feb-Aug?
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RK2020: When we were traveling from Montana to Arizona for the winter months, I did my own research and found an oncologist in Scottsdale. I had forwarded my medical records to him and another oncologist and made my choice after meeting with both. This could be a back up plan in case you do not get a suitable recommendation from someone in the group. (I previously was using Mayo Clinic in Phoenix but too many reasons to go into, I "fired" them and made a different choice.) We no longer travel from home for the winter so I am back with my regular oncologist year around. So far, so good.
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Rosie...great news!
Rabbit...wishing you the best as always. My scans are on the 22nd.
Candy...sounds like you got a lot of info there. Take your time trying to process it all.
Hope everyone is doing well! 🤗 💐
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Okay, folks, here's a strange one for you. This was my first month completely on Ibrance tablets versus capsules. I've been on Ibrance now for just under a year. I wasn't always the best about taking my capsule with a meal, but figured that I was "close enough" if I took it within an hour or two of dinner, especially if I had a little something with it.
I've related this before, but starting in January, my CA27-29 and my CEA started moving upward, reversing a downward trend. The last two months, CEA didn't really move, and the CA27-29 went up by about 20 points each month (so not dramatic movement but a bit slower than it was moving before that).
In today's bloodwork, my CEA moved up a few more points, but my CA27-29 (which I consider pretty accurate for me) moved down by 22 points. Still not close to normal, but hey...
My (unscientific) theories? Maybe I'm one of those people who had a resistance to the capsules if I didn't exactly take it during a meal? Or -- I had two bouts with two different viruses in late December/early January and then again in late January/February. Could that have been THE virus and did it screw with my numbers for this length of time?
Anyway, I'll take the decline bc I feel pretty good. Happy to have some good news for once.
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RK2020 I use Florida cancer specialists. It’s about 5 min from Moffit on USF campus. I have been referred to surgeons at Moffit and specialists but my main oncologist is Dr. Egbert Zayas 813 632 6220.
Hope this is helpful
You can message me if you’d like any additional info
Tanya
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