Ibrance (Palbociclib)
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Philly good to see you back posting and everything crossed that you have good news from your scan 🤞🤞🤞
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Im going to post this here as I think I have covered most of it in this thread-
Called insurance today to get the ball rolling on moving to private oncology. I can stick with the same consultant I have now (but have met once, when he had hospital rounds, last November - technically I am under his care but its usually a 'member of his team' who I meet monthly) or I can find a new doctor. For the ten or fifteen minutes I spoke to the guy I appreciated his manner and his communication style and he is at the same private clinic as the RO I had, and I really really liked her. Only concerns are that he focuses the bulk of his research on TNBC and I would prefer to go to a public hospital that has private services on the side.
I will have a look at who else may be available, but part of why I am looking as well is to maybe get a fresh perspective on my situation (if warranted), although existing oncologist may have more freedom privately than what he can offer under the public health system. I don't think I necessarily have to choose, but can go have a consultation and see if the MO would be a good fit.
Of those who have switched, or who really like their current MO, what would you say is the most important component of that relationship and what to look for?
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Long story, I am currently with my 4 th MO. I like him probably the most. He LISTENS to me. We actually have conversations about my concerns. He doesn’t just pop in, look at his screen and tell me what to do. I’ve asked some dumb questions I get good answers. He LOOKS at me when speaking. He moved office much farther from me, gave me choice of staying there. Told him I’d follow him.
If and when I/L fails, I’m confident h
will talk me down, and suggest what’s next.
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Sondra,
I am with my second MO (originally diagnosed in 2003). I don't have the greatest advice -- I picked my current MO bc she was the head of the breast cancer at my cancer center, had published a lot, was involved in a lot of trials, and also bc part of her medical education was outside of the US (I know you are in the UK, so that probably doesn't count) -- I thought she could give a different perspective on things. I will tell you that I wouldn't call it the "perfect" match at all, but we have grown on one another over the past year, as she has seen that I do a lot of research myself, ask her questions about it, ask her questions about treatments, etc. Gradually, she seems to be more responsive to what I'm looking for. But honestly, I just feel like I could have thrown up a dartboard to find someone and the same thing could have happened ... so not sure it's the best advice.
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The most important component of the relationship for me is mutual respect. Does he look you in the eye or at his computer? Does she take your research and questions as worthy of a well-informed answer? Does she ask you what you think, and do you want to get inside her head to understand her reasoning because she is smart? Is he threatened by a well-informed patient, or comfortable? I think the oncologist's knowledge and experience is important — do they specialize in breast cancer, have they been at it a while, did they train at well-respected institutions? Something I have never heard mentioned is their ranking at the institution. If they are one of the senior oncs, they will have the confidence to individualize your treatment, to call on colleagues for input, and will refer you to the best people. For you, Sondra, I would like to see an onc address your distress about the breast tumor.
I first decided to choose a well-ranked, major cancer center. I found my onc by asking a nurse there. I said, “I am a person who wants to understand everything, and I really liked how doctor X (The genetics specialist) talked to me. Which oncologists here are like him and might be a good match for me? Can you help me get in to see them?" She named two and I chose the female. My first visit with her was a “second opinion" and I visited another onc at another cancer center the same way, then made my choice.
If you don't have access to a major center or a breast oncology specialist, I think it is important that the oncologist have the humility to consult colleagues and do some research on your behalf. No arrogance masking lack of confidence.
In a word, Teamwork.
My first onc I fired even before I switched institutions, because he refused to discuss research with me or to explain why he suddenly changed his recommendations. Maybe he had assumed I was younger and then noticed my birth date? At times I could tell he had gone away and read something. Well, I can do that. What I needed from him was expert advice, not someone who would say, “It's up to you" whenever there was an important decision to be made. The last straw, though, was when my DH caught him looking at another patient's records on his computer when he was supposed to be listening to me. Now he had a reputation for being “nice" but I needed smart and invested.
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Sondra, I feel the same as Spookiesmom. They listen and don't rush me and are open if I want something tested. They make me feel like we're in this together.
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love from philly nice to see you back. Hopefully The advice from Pat is what happened. I’m happy you were able to enjoy some edibles. I use MM but so far haven’t found any in Tampa. Went Vegas a few years ago and enjoyed some chocolates and such. They pack a punch though.
Hello to all
Tany
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Shit, Shit, Shit Just saw on my online chart that I have progression in my lung mets after only 8 cycles of Ibrance/Falsodex so my tumor markers are accurate. (They were going up last 2 months)I cannot go through another biopsy surgery like I had in December. It was a Vats procedure and is pretty invasive. Are CTC blood tests now approved to see if my cancer has mutated? I know I have seen people on here remark about it? I'm so bummed! Was hoping to get longer on my 1 st TX.
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Oh, Karen, that really sucks! I'm so sorry...
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Karen, that sucks. Sorry to hear of your progression.
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Imagine- Sorry to hear of your progression. I do not know about the CTC tests, sorry.
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Imagine - I'm sorry about the progression.
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Shetland - thank you for that long post, I appreciate it. I think part of the problem is that in the UK doctors still take an approach that they know what is best and the patient must listen, or at least the british ones do. As an American I want that teamwork approach. I am currently at one of the major teaching/research locations, but being bound by treatment protocols does not really lend itself to effective treatment or patient management. Your post gave me some really good ideas to consider when I check out a new option or two.
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I just progressed on Ibrance/Falsodex my first line of TX after only 7 cycles...I will print this and try to understand it.. I feel so bummed. I am highly ER+++ why did Ibrance fail me???
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Imagine: So sorry to hear about your progression. I progressed after three years on Ibrance/Femara. Now I'm trying Ibrance with Faslodex. I just started the monthly dose so don't know if it will work, but might you possibly try Ibrance with something like Femara? I'm also on Herceptin/Perjeta for a different cancer in my other beast. Ive yet to meet anyone here with that. Many on this site are all here for you.
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Imagine - I am sorry to hear about your progression. Cancer sucks. It seems like it mutates rapidly and often becomes resistant to what ever drug is thrown at it. It is often silent. I am cycle 12 of Ibrance/Arimidex and am now confused whether it is doing any good. After the first 2 CTs the first thing I was told was that the tumor in the R-axilla had shrunk - hooray. This last time I was told "overall, it looked better". When I started asking questions, I was told that size did not matter because the tumor could present itself/be seen differently image to image, that where one radiologist measures it might be a different place than another radiologist measures it, or different radiologist interpret the same image differently. When I compared the results, it seems like it actually grew. F****. I am supposed to call another surgeon, because the CT picked up a gastrosomal tumor. Well, Sh**. I just had one of those removed in February. That surgeon told me it is not cancer and had been there for years, the problem was that it was starting to obstruct the small intestine. The oncologist told me that it is considered cancer. I have not called the GI surgeon yet.
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Cross posting---
Just an update on my Ibrance/neutropenia issues. To recap, at the beginning of the last cycle my ANC was 700 after my week off. MO told me to start cycle. Oookkaayy???!!!! But I did. We rechecked blood 2 weeks later and ANC had dropped to 500. Told to stop Ibrance and recheck lab in 1 week. Recheck was yesterday morning. No results by end of workday yesterday. This morning got message ANC is now 900 and we are going to try the on 5 days/ off 2 days scheduling. I will start that tomorrow with breakfast.
On Monday, 2 days ago, I messaged MO nurse that I wanted appt with MO to discuss ideas I had -- I think I listed them here before, but here they are again. 1. Try 5/2 schedule. 2. If no help, try on 3 weeks, off 2 weeks. 3. If no help, lateral move to Verzenio, with still using AI and Lupron. 4. Or Ibrance vacation, and use Letrozole/ Lupron only for a bit. MO nurse wanted me to message my list of ideas so MO could read over and be ready. Sounded good. I know some on BCO have said they email questions to their MO's so they would be ready for appt. Today I got message MO would try to call me between patients today. It is now 6pm and no call today. Disappointed. I have order to do the 5/2 dosing starting tomorrow, but I feel like my concerns, our communication, is not important to MO. Maybe she had an emergency, but I wonder if I am bugging MO too much with my messages to nurse. That they regret taking me as a patient. Maybe I am wrong.
All this time, with all these neutropenia issues, my communication with my new MO has been thru typed messages. First appt with her was July 13 and next appt is scheduled Sept 28.
So, to summarize-- trying on 5 days off 2 days schedule and see if neutropenia gets better. Do not know when next lab is supposed to be done.
Sigh....
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Ok, ladies, so I guess I freaked out too soon. My MO just called-- 7:30pm.
We are going to do 5/2 scheduling. Recheck CBC every 2 weeks for the month. If cannot tolerate 5/2, will try on 3 weeks/ off 2 weeks. Ok with moving to Verzenio if need be. And scans due end of Sept so assuming all will be stable. May do bone marrow biopsy if I continue to have issues to rule out anything else going on.
She was friendly.
We have a plan. That is good.
Edited to add-- She said the clinical trial conducted at her facility on the on 5 days/ off 2 days schedule is done and due to be published at San Antonio Conference in Dec. Could not discuss with me until published. So.... we need to be on the lookout for that info in Dec.
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Imagine...I am so sorry you have progressions. You'll be in my prayers.
Candy...so sorry you are still dealing with all this.
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candy , I am glad that ibrance with extra days off works well for you, take it as positive outcome consulting with new MO. Don’t worry about the call, probably your MO thinks while your blood test is good so it is not urgent to call you. Or a confused careless nurse made a false promise.... it was couple of weeks ago a nurse called me urgent visit with neuro oncologist, said mri reports showing something that dr wants to discuss with you in person, and scheduled an appointment next day, I was on too much stress for a day until I get the clinic, guess what?! it was a “mistake” and funny.. nobody even apologized. I told this story only, please don’t take it seriously what a nurse would say on the phone. Be happy that ibrance works for you.
Despite I am in lower dose of ibrance still fatigue is an issue, I read your posts ladies and get energy to see how strong you are fighting this unwelcome disease
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ohhh probably my tired eyes didn’t see new post! again happy for you candy that all works for you. Having a plan ahead will reduce stress.
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Candy,
Well, that's a positive interaction with your new MO. Also, the fact that she called you at 7:30 at night is remarkable. One of my docs is like that (the radiation oncologist).
I hope the 5/2 schedule works for you. I'd like to try that, so I hope that that report is positive (which I'm guessing it is if she's putting you on that schedule.)
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Candy...I think I was posting while you were updating. Glad it seems to have worked out.
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Well, hi ladies or some fellows: I saw the oral surgeon yesterday and he wants to perform a graft to my jaw from my shin. The surgery is too "major" for him so he wants me to see a specialist (Seattle, Salt Lake City, etc.) I saw my oncologist today and my tumor markers have gone through the roof. He is taking me off Ibrance and Faslodex. doesn't want me to have the jaw surgery until my cancer is under control The oral surgeon is concerned about my jaw breaking since there is so little bone left. The oncologist is putting me on either Taxotere or Halaven to get the cancer under control. My husband thinks the cancer is flaring up because I am eating too much "sugar" - mostly in the form of fresh fruit. Any advice you can give regarding the chemo would be appreciated. I have never been on chemo before and am intimidated. Not sure if I will get any support at home but will have to deal with that also.
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Candy, I’m glad your MO called and you have a plan you’re comfortable with. It will be interesting to see if you feel any different on the new schedule. I hope you can rest a little easier tonight
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Wandering: My uncle's wife has MBC. She's had different treatments the last few years. She progressed on Ibrance and had issues with her jaw that sounds like yours. She went on Afinitor and my uncle posted on Facebook a few weeks ago that she is in remission. So I hope something works for you two. Hope you get the support you need.
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Sorry, meant "hope something works for you too."
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I feel wound up tonight--not sleepy. A good wound up. I am a plan person. I am glad we now have a plan. Try 5/2. Next try 3 weeks on/ 2 weeks off. Then to Verzenio if Ibrance still an issue with neutropenia. A plan for the next couple of months. Yes, I have scans Sept 28 and all would change with progression, but if still stable then we have a plan for my treatment and my numbers.
So good to feel hope. That there are choices. That my MO is willing to try stuff.
God is Good.
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Imagine, what does your progression look like? If it is minor, it may be worth talking with your MOma our staying on your current meds two more months and then rescan. It can definetly take some time for Ibrance to show improvement.
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Wandering...I'm sorry your tumor markers are flaring. Is your doctor taking you off the meds based only on this or did he/she do scans as well?
Try not to think that things you did caused your cancer. How many people out there smoke, drink and eat anything they want and they live until 90? You didn't cause it. It's just our dumb luck.
Here is info on sugar intake and breast cancer:
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