Ibrance (Palbociclib)
Comments
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Candy,
Great that you got the appointment with doc in St. Louis. Yay! I think that will bring a lot of clarity to your situation.
As for my MO, I go to Hopkins, which is an NCI/NCCN academic center. I think the place is great, but I don't think they are the most innovative thinkers in the world, and they are VERY research based -- if I ask about something, the response I often get is "the research doesn't show that." That is the shut-down phrase, I've learned. I haven't figured out how to deal with that yet, except to find research that I can send to her to look at.My doc is a BC specialist, not a generalist (but I'm gradually finding out that maybe MBC is even more specialized than that, unfortunately.)
So how have I dealt with that? 1) I send my MO emails with very pointed questions, and if I have research, I refer to it. She is getting better at answering these, but it's still spotty. 2) Now, when I have an appointment set up, I've taken to sending her a list of questions beforehand that I would like to discuss. We just did our first appointment like that last week. She hit most of the questions, and referred to my email during the appointment. 3) I had a second opinion from a very esteemed MO who is at Northwestern. He sent her a report. Her tune has changed a bit based upon his recommendations (meaning: he said do not change from Ibrance; she was pushing for a change. Now: we are not changing, at least for the time being. She was also more open to discussing clinical trials that he recommended for future treatment options, even though when I suggested them she was less enthusiastic.)
I don't know that there is a "best" way to deal with a doctor, but these are some suggestions. I'm sure that others have more suggestions, and probably better ones than I. I also wouldn't worry about getting your treatment locally with direction from an MO who is somewhere else -- I've seen many people on these boards talk about that, and I think you should consider it. I think the pitch is that they are in consultation with one another, not that one is "better" than the other.
Good luck.
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candy678–. Have you talked to your specialty pharmacist? I know when I renew Ibrance each month, I am given the opportunity to speak with pharmacist. I have done that one time when I had a question I couldn’t get an answer to. Perhaps they would have something about the odd treatment your MO wants you to do??
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Candy, I understand how you feel. Your post on how you feel emotionally and physically are very similar to mine. I was glad you post it because I thought I was the only one. My MO keeps telling me to hang in there, until my last visit on the 15th. He agreed to reducing the dose to 100 mg. However, to make a long story short, I am having difficulty changing the dosage due to insurance and pharmacy issues. So I am working on three weeks without my medication. I thought I would feel better, but that is not the case. Continue to have headaches, hair loss, fatigue, sore mouth, emotional craziness. I have right side pain, some days worse than others. But the doctor just says to remember that "tinge" is just the medication working. I have been on Ibrance since October and reduction in one tumor has only gone down about 2 cm. (from approx 7 cm to 5 cm). They are following three on my scans. I have more. They seemed pleased and I should be I guess. But would really rejoice when I can feel good again and not take any medication.
My MO and staff help where they can. They have no online portal or way to reach them by email. They are very busy and are the only one locally. I would have to drive about an 1 1/2 hours to the next one. That doesn't sound far compared to some people on this thread. I try to be sympathetic to the office's time, but at the same time, I want to them to be sympathetic to my individual symptoms. As we know, one cancer is not a one size fits all. Anyway, I too have the concern to have to drive when I don't feel like it. But thanks to you and other responses, their other options to consider.
Good to luck with everything, will be praying for everyone.
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Elenas401, I read about a woman who was switched from femara to Faslodex after 3 years and is three years into that run. It sounds like a good option to me FWIW
Penny
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Penny-78 I appreciate that experience of the woman switched to Faslodex. It's nice to hear something positive like that.
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After some persistence, someone finally admitted something. I finally got an email through my portal. Apparently the person in charge of pre authorizations made a mistake and checked the "yes" box instead of the "no" box like they should have in regards to progression of disease while on Ibrance causing my refill request to get rejected. I'm thinking to myself.."mistake"....we have skedaddled way past "mistake" and slammed headon into quagmire territory. I called to inform my MO of the issue thursday morning. My MO's nurse said an appeal was filed this past Monday and NOBODY from then until now thought to tell me "Rabbit, its okay, its not progression, it was a typo, someone screwed up". Here I am thinking I'm going to be told the worst come July 8th because nobody's saying anything until almost a week later and nobody would just directly answer my most pressing question "have I progressed?". All it takes is a 2 minute phone call. WTH is this BS, would the person who made the mistake like to pay for my meds if I have trouble because of their "mistake"? Man does this make me feel pressure to be on the ball, if I hadn't caught this myself it seems like nobody else would have and I'd be 7 days from finishing cycle 8 with no meds in the queue. The appeals process to try to appeal a notice of denial has 3 stages and can take as little as 72 hrs in all 3 stages to be reviewed in urgent cases and as long as 20 days in others. I'm just hoping I don't have an issue with re authorization and that it doesn't take forever. My hubby noted how quick Insurance companies are to pull the trigger. I plan on calling my Insurance company to make sure they received the appeal, I feel I have to baby this process now every step of the way, energy I really don't want to waste on this crap.
On a side note. I gave the tablet a good sniff today before I took it. Definitely smelled something, not sure how to describe it, don't remember capsules having odor but these did. Chugged down with water, smacked my lips around a bit. Nope no taste. You really have to give it a good push through the front though to get it to come out the back. I really do tolerate Ibrance well, hope all gets sorted out. What I hate about this most is now I feel ashamed for having gotten worked up about what happened. But who wouldn't? Being made to believe you've progressed and then its a "mistake"...ugh.
Candy, proud of you for going for second opinion. I sometimes hate the abrupt appointments we have sometimes dealing with dr's and the dismissiveness of "Don't visit Dr Google". All I've ever seen on this site is people researching scientific and reliable sites. Very educated women on these forums. Everyone above has given great advise, wishing you all the best with testing the waters with the st. louis dr!
Well Ativan and me are gonna try to chill out this evening a bit. Thank you ladies for hanging in there with me and lending support through this
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Rabbit,
All I can say if OMG!!!!! Wow. It's not like mistakes can't be made, but man, why couldn't they just fix this sooner?
Hope you can chill for the rest of the night.
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Oh my gosh Rabbit! Don't these practices know that this isnt just a job for us, it's our lives? If a mistake was made, IMMEDIATELY pick up the phone! Geesh.
My old surgeon was the best and one time even called me on the Sunday NIGHT of Memorial Day weekend with results so that I didn't have to wait until Tuesday. She called me as soon as she got text results. I'll never forget that little act of kindness. I miss her so much unfortunately I don't live in that state any longer. 😩0 -
Rabbit...I am so so glad you finally got an answer and the answer we were all hoping for you. You must be emotionally exhausted. I hope you had a nice relaxing evening.
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Rabbit- Wow that was a BIG mistake !!!! I would think of complaining to the administration over that. Progression is a big thing for us. To have to be worried over a "mistake" is unacceptable. And, Yes, now you are on high alert that you have to double check all their work. Not good. Loss of trust.
So I am in the process of requesting records to be sent from my center to the St. Louis doc. They want my records from 2017-present. I last saw the St. Louis doc in 2017 and she wants to review what has been going on with me. And they want the records BEFORE my appt July 13.
Another question for group--- So I met the St. Louis doc once. And I was shell-shocked from the new diagnosis of Stage 4. And I have learned A LOT since then. I will be looking at her through a new set of eyes now. And I know what questions to ask. And have the research to back up my questions. So what if..... she is another by-the-book MO like my current MO?????? There are multiple docs at the new center. But how do you go about finding one that would fit me--- my thoughts of thinking outside the box, my having questions and not just blindly following the doctor without question. I cannot make an appt with EVERY doc on staff till I find the one I like. Is it a crap shoot on who I get?? I hope I am not getting the same type of MO and having to travel for the same situation. Thoughts....
Edited to add---Those that go the the large cancer centers that staff multiple MO's --- or Leigh that works in a university center--- can I ask the MO I am due to see in St. Louis who on staff would fit my personality if she does not. Could she say "Dr. X would be a good fit for you. Lets get an appt with him for you". Then I could go to the large center with more to offer and have a good fitting MO. Thoughts...
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"What I hate about this most is now I feel ashamed for having gotten worked up about what happened. But who wouldn't?" Exactly, Rabbit. I believe we all have PTSD. I was officially diagnosed with it after chemo. This experience has caused an exacerbation for you. Please don't blow it off. Unfortunately, something like this will very likely happen again. PTSD can get dangerous if left unacknowledged. People at your MO's office need to be made aware that this "mistake" caused you great distress and harm. I would want to sit down across from the person who made the "typo" and explain what happened to you. How serious it was. Don't let them blow it off, either. I know this seems overly dramatic, especially for me, but they need to know how serious this is so maybe it won't happen to you again or to someone else. You need to say to as many people as you can, "do you know what it is like sitting around for a week thinking you have progressed when you haven't? And getting that information from insurance? And having this office ignore you? Do you know what that's like?" They don't have to answer. (They can't.) They just have to HEAR you.
Bev, as far as a research outlook, my MO#1 was very research oriented. At least in his own mind. His favorite phrase was "there is no evidence that xxx." I had UTI's the whole time I was on Tamoxifen. I told him I thought the T was causing the UTI's. He said "there was no evidence that T caused UTI's." I was not ready to argue at that point. But we know that T causes uro-vaginal dryness and uro-vaginal dryness causes UTI's. So indirectly, T (and AI's) causes UTI's. I kept him for another two years then he was gone. The last straw was when he said, "I think you want to have an infection." Twice in five minutes. Fired him the next day.
After meeting so many people here from all different types of locations and seeing their experiences, I'm not sure if there is a huge difference between rural and city medical providers. I think there are good and bad everywhere and luck plays the largest role.
Edited to add: In WWI, PTSD was called shell-shock.
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Just got phone call this morning. My appeal went through and I'm approved for coverage of Ibrance again! Progression is a big deal for us like Candy said, for a fleeting moment I was there and it scared the crap outta me. Off I go to pop another pill, cut a rug and cut a muffin. I watched blazing saddles the other day and thought of all of us gathered around that campfire, for them it was the beans that made all the racket for us it's just cuz we popped an Ibrance. I feel like I just completed an emotional iron man triathlon. Thank you, Thank you ladies for riding that out with me.
Candy, I'm with my original MO now but have had experience with 2 others. 1 when my houses roof fell into the bathroom along with a cascade of water and I needed to temporarily reestablish MO at new place out of state as I stayed with MIL to start chemo when I was early stage. Yes indeed ladies, day after biopsy results came back positive for cancer my roof decided to do that. That MO was very by the book and wouldn't accept me doing any chemo that wasn't AC+T. My current/original MO wanted AC+T for me too but was open to TC x 6. My temporary MO nope, no wiggle room. Felt she would just come in see if I had a pulse and then sent me off to be poisoned again. Hit her again infusion nurses and put some stank on it, she can take it she seemed to say as I crossed myself exiting the room. The other MO I saw once because my MO was at a conference he was very laid back, 2 treatments away from finishing the Taxol part of AC+T back home. He leaned up against the cabinets with a smile folded his arms and said what's up? He listened even made suggestions for supplements for neuropathy I was experiencing. I liked him.
I think it's kinda a crapshoot. I feel the infusion nurses are more out of the box thinking than the MOs are. Mine is by the book but is flexible and willing to listen to my concerns about a treatment. I feel like in most cases it's up to the patient to advocate, research and push for what they want. MOs see so many patients and I think playing it by the book is their safety net to keep everything straight. I wish things at this stage was more personalized and customized. Where I got treatment with my temporary MO they had an absolutely fabulous nurse navigator. That made up for the MO because she was outta the box thinking and gave that personal touch of care and concern. The place I am now doesn't have that service at all. Hoping you'll get someone like that laid back personal MO I got to meet once. I thought about what you said above about being careful not to burn bridges, i feel like that alot sometimes.
RK2020 new name to the thread I've seen pop up a few times I think I've neglected to welcome you, welcome aboard!
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Jaycee, I intend to do what you outlined above. Not necessarily just for me. But I do not want another person to go through what I did. I get mistakes happen but that went a bit too far for me. Hubby is coming in with me as well to my in person appt and said he will do screening or whatever but doesn't want me to have to go inside alone after that fiasco. I will be quietly pulling multiple people aside while I'm there.
Edited to add: I'm pretty sure I have PTSD from the chemo too. It's amazing what cancer treatment does, the aftershocks. That's what made this hard because Ibrance is my drug, I won't do chemo again, I just can't.
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Candy - I’ve had the same thoughts as you on finding an oncologist that I can gel with. I feel like reading their bios online does little good and reviews aren’t always that helpful either. It’s like rolling the dice and I’m not a gambler. I’m looking for a new MO at Moffitt. Im happy with Moffit Cancer Center, but think I could get an oncologist that’s a better fit for me. My plan was to post here as well as on some MBC Facebook pages to see if I could get a recommendation. I sure would feel better getting recommendations from women who educate and advocate for themselves. Don’t even get me started on the “Dr Google” comment. That’s horse doo doo.
Lo and behold, without soliciting I got a recommendation last night from someone on Facebook. I haven’t made an appointment yet but just getting a name was a BIG relief. If anyone else on this site happens to go to Moffitt, I’d welcome their input as well. I won’t be going back to Florida until the fall so Ive got some time to sort things out.
I wish I had some better advice to give you. I wish you luck!!
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Jaycee,
I agree with you that there are good docs all over the place -- it's not necessarily that someone is located in a rural area or in an urban area. Some docs just have lousy bedside manner, and think that patient opinions don't matter at all.
For me, I'm on my second MO. I was with my first from 2003 (original diagnosis of BC) until May 2019. She didn't have the best bedside manner, but she seemed to be very up on the research and only treated BC patients. Hey, she kept me relatively healthy from 2006 (my first recurrence) until 2019 (my latest recurrence) and so I trusted her pretty much. However, I never really had much reason to challenge her. Our relationship changed in February of 2019 when, with rising tumor markers and her throwing up her hands about it with no ideas, I went up to Hopkins for a second opinion. Original MO didn't like that at all. Then she didn't call to tell me what my MRI said -- that I had cancer in my liver -- so that I saw it on the patient portal. And then, when I emailed her to see what she thought of local liver interventional therapies, she completely dismissed that as "not something that she had ever advised any of her patients to do in thirty years of practice." STRIKE.
Current MO is the doc who I saw in Feb. 2019 and who I called in a panic in May 2019 when I saw that report on my patient portal. She is well regarded in the field, and she's the head of the breast cancer center. She is very well versed on everything that's coming out, and she is the main researcher on a boatload of clinical trials. My main problem with her, though, besides the fact that she is a bit unyielding if something hasn't already been proven, is that I think (although I have no direct proof) that she delegates a bunch of stuff to her NP, who is much more of a functionary. I don't like that one bit. Sometimes I think that gives the MO "permission" to not be as well versed in a particular patient's case. I do think that's probably a bad byproduct of a large center. But it also means that you have to be on top of all of your stuff yourself. If I had any advice to offer to anyone, that would be it: do NOT depend upon your doc to remember all of your stuff, to reach out to you, or to be your sole advocate. It's just not likely that that's going to happen in today's medical situation.
Candy, you can read between the lines here. I'm not sure how you end up with a perfect doc/patient match. We can all look on paper, read doctor eval sites, look at publications, etc., but it's hard to tell without sitting down with someone. I hope someone else can offer you some suggestions.
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Bev, I am on my third MO. (Not surprising, right?) It's all a matter of trade-offs. I could have traveled one hour each way to El Paso and maybe done better. I could have traveled three hours each way to Albuquerque and had even better choices at the University of New Mexico. I chose not to. I chose to stay here and deal with what I have. In all cases, (not just at large centers) "it also means that you have to be on top of all of your stuff yourself." That is our lot in today's medicine. Doctors are not happy with it, either. This is not what they signed up for, especially the older ones. MO#1 told me he spends 90% of his time dealing with INSURANCE. I believed him because he was never reluctant to complain. And they have to be good at it. Case in point, Rabbit's fiasco. I hope Rabbit can get her DH in because that would show them how serious their mistake was. My center would not allow it.
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My original MO was with Florida Cancer Specalists. Dr Patel. I liked him, and would have stayed, but Humana kicked FCS out out network. 2nd MO retired. Currently with Comprehensive Hematology and Oncology. Dr Hansalia. I like him too. I am near Clearwater, Moffitt has always been my plan B, since it's only an hour away.
I think FCS has offices all over Florida, possibly in Sarasota, which would be closer for youHope this helps.
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Rabbit - glad to hear that you were able to get things straightened out and that it was a "checkbox" error. But it is really discouraging that with all the advances in technology that a significant change in the medical record is not flagged for review. Also discouraging how long it took to get an answer.
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Rabbit, this kind of “mistake” is unforgivable, emotionally but we have to find a practical way to elevate them. All of us dealing with bunch of lay-back staff who do not care to pick up the phone and correct their own “mistake” which those “mistakes” affect our mental health and physical health accordingly. As I read posts here, Jaycee has done excellent research to help to understand what is going on with insurance in case the disease progressed. All I am saying is that we need to find a legal support to protect us from wrong action=mistakes
Here my story about of one of those mistake!! But short version: I diagnosed with stage 4, spread to spine bones, my MO referred me to a radiation oncologist right after but guess what I was waiting for mri referral for 3 weeks while the nurse responsible placing referral was careless enough to do that! When I spoke up my voice to clinic manager I was told that nurse X has family issue so be patient with her..... oh really!!! My whole life is upside down just diagnosed stage 4 .... finally I got mri results and saw a radiation oncologist, when she wanted starting radiation therapy next week, her nurse (call her xx) thought my case is not as important to place urgent order for insurance! 2 weeks later when I followed up with Insurance they said they have not received any referral, again back to nurse XX she lied she sent a referral, naive me I believed her, and asked her please resend it, she said big NO: “we only place referral once, we don’t have time, we are busy...” nor she did not send my message to RO dr..... my spinal bone fractured and the lesion spread to spinal cord. I did get radiation treatment after all but only for 10/10 pain management of bone fracture and nerve compression. Being in bed for 6 weeks, having a lot of pain, I losing my spirit and lots more I lost because of a stupid nurse made health decision for me. And the story continued on following up with RO dr in 3 months, the nurse again indicated I don’t need follow-up and canceled my appointment. 2 months ago mri showed there are progression of disease in some areas of spinal cord.... these things might not happen if those 2 careless big-headed nurses had done their job at first place.
I feel I am powerless to manage all things and bullied. asked myself these progressions couldn’t be happened over and over. My MO’s tone has alsochanged after seeing those results, he was optimistic but now he uses that phrase that I hate “improve quality of life”.
I know this forum is only about Ibrance and am sorry if my long post is irrelevant but I can’t see a “mistake” again affect one of us.
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JuliaBeatIT and Rabbit - your posts about errors and how they affected you are not irrelevant. Self Advocacy is so hard and exhausting. Hard to know what questions to ask and who you should ask, followup. I'm not asking for a watchdog, but a patient advocate who can help with critical questions and followup, someone not tied to the DR, facility, insurance, pharmacy. It seems like once in a while when my MO asks a question (did I do a test etc) , my initial response is don't you know ? Sometimes the test has not been scheduled, even though ordered. Once I interupted a surgeon as she was explaining something and told her not to use "the 5 year survival rate...." because it means s*** to a patient. She stopped herself, and asked me what questions did I have. She was actually a good listener, so I should not be too hard on her.
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I saw this tonight and thought the message might comfort you as it does me:
Love from PatGMc
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Pat - that is actually something I was contemplating last night. This was very timely and I appreciate you posting it!
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PatG I just logged in to see if we’d heard from you lately. And there you are.
Thanks for being here.
Love, Penny
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Pat,
As always, thank you so much for your timely and comforting message.
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Pat- That is a hard one for me. I know my Lord is in control. But... I do stress over the 'what next'. And I wonder about my decisions. Like with this changing MO business. Does God want me to stay with my current MO--- is that His plan? Or is it the plan for me to change? If I take it upon myself to change, and that is not His will, then did I just screw things up? Am I walking ahead of God, not letting Him lead?
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Thanks for your post Pat. I think finding peace is a struggle for many of us.
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reference my question about limes while on Ibrance: had appointment this week with MO. Eating limes or lime juice on my off week of Ibrance should be fine. Thought I would share this with everyone
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DodgersGirl - what about lime on days you take Ibrance? I’m about to make carne asada which uses lime in the marinade.
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RK2020: I had reed on one of these threads that limes were a no-no just like grapefruit while taking Ibrance. Seems it could increase side effects and/or slow the process times of liver breaking down meds.
During my week off, Ibrance isn’t in my system so it should be ok to eat/drink limes.
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RK2020, I put lime in everything including water. I use it throughout the Ibrance cycle. I would not sacrifice carne asada for any reason.
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