Ibrance (Palbociclib)
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Serentiy, Rabbit, RK, Chico -- thank you for your good wishes and support!
I'm in a "be careful what you wish for" mood for sure right now. After pestering the NP to release my test results, she did. My super high ver enzymes did fall a bit more -- not as much as I'd hoped -- but mostly in the right direction.
But my CEA has skyrocketed -- from 1.3 in May to 192!!!! It had never ever been elevated. And now it's through the roof. I know that's particular senstive to the liver, so a surge is consistent with the other numbers -- but 192?!!!
Has anyone else seen that kind of sudden leap? Again, my liver MRI was totally clear
Penny
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You all are so wonderful. I’m glad I found my way here. We are hanging in there. I think after the trauma of chemo years ago I expected these pills to be a nightmare and to be sick immediately like chemo was. I’m just thrilled to wake up on day three and feel about the same!
We are both blessed with a strong family and friendship network who are looking in on us, providing us meals and emotional support while we grieve. Im grateful for all of your tips and suggestions. I bought Imodium at my dr suggestion and got some mouth rinse after reading here. I figured given the pandemic I’d rather have them on hand than have to make another trip to the store should I find myself in need. Things are so bad here in GA I’m just trying to stay home and do all my shopping online.0 -
Penny,
I don't have any advice for you except that in my case, CEA is pretty screwy. My old MO didn't use it at all -- she only used CA27-29 and regular blood tests.
Just speculating here, but does that test measure stuff over a period of time? In other words, could it have been reflecting what you just went through rather than what is going on right now -- sort of like an A1C test for blood glucose measures about a 3 month window of time? Also, I think that like some other tumor markers, if you have infection or inflammation, CEA can rise.
Did your NP or doc react to that number? If not they must think that it's caused by infection or inflammation.
Thinking good thoughts.
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BevJen, thanks for those thoughts! I saw my MO about an hour after the blood was drawn. She didn't comment on the CEA but I think that portion of the blood result probably came in after our visit.
I've been consulting with Dr. Google all morning and you are right -- there's a chance it could indeed reflect what I've been going through. The liver enzymes have gone from 20X normal when I was hospital last week to 10X normal on Thursday so those are still pretty whacky. Seeing the CEA at 60X normal did just freak me out. Plus I'm not feeling that well today -- though who know how much of this is just stress!
Sandermomma, I'm so glad to hear you have a strong support network. Know that we are here for you too --don't hesittae!
Hugs, Penny
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Anyone heard from our dear friend PatgMc lately? I miss her!
Penn
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Penny,
I was thinking the same thing yesterday -- Pat, if you're reading, please check in. We miss you.
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Yeah where is Pat???
My second opinion MO appt is tomorrow. I will post an update afterward. I have my questions ready. Hope communication is good.
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Rosie- your scans last week? Any news?
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Good luck tomorrow Candy! I hope it gives you some peace of mind which is so important. Nobody on this forum needs extra stress.
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KBL - I wanted to thank you for recommending DenTek for my mouth sore. I have had a very bad sore since the first week of April - over 3 months! I have been to two oncologists and tried everything under the sun - prescription, homemade and over the counter. I used the products religiously and got zero improvement. I bought a pack of DenTek and put one on just before bed. It’s a little awkward and I ended up gluing the side of my tongue to the colored side - lol - but the improvement by morning was incredible. I put another one on last night and it’s almost gone! Seriously, almost gone. You can see a big indentation where it used to be but I’ve got new skin there now. You ladies rock! Oncologists may be medically trained but you ladies have learned a ton through the school of hard knocks and trial and error. Mwaaaa
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Ok, I am reviewing my notes for appointment tomorrow. I don't know if any of you do this, but I talked out loud (I live alone) like I was talking to MO. And presented my case like I hope to do tomorrow. I was factual, "just the facts ma'am". Dates and lab results, Zarxio injection, and follow up labs, etc. No emotion. No blaming current MO. Etc. I get that. But, then I wonder how to discuss with this new MO about what I am looking for in a MO for my future--- respect (both ways) and inclusion in treatment plan in the future, thinking outside-the-box not just NCCN guideline following, trying some things (change up Ibrance scheduling), knowing that I do read and research--not Dr. Google, but respected forums, seminars, conferences, etc.
Is this, or any MO, going to think "Oh my, I don't want this patient. She is going to be a handful. She reads and is going to think she knows it all and will question everything".
How do I not come across as a know it all, problem patient???????
Thoughts......
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candy678 - it sounds like you are on the right track with knowing what you want/expect from a DR, getting it clear in you mind what you want to ask. It is abolutely your right to ask questions. Is there any way to send your questions ahead of time? Twice I brought my list of questions with me on the first appointment, gave the DR the list, and went through them. One timie a friend went with me who also had the list, and helped me make sure I asked it and got an answer. Is it possible to schedule a "long appointment" ? Longer appointments might be coded differently and might be charged a higher fee - but they should be able to tell you this. A DR could be fully scheduled, and might need to meet the next patient right away, but if they can reserve the time ahead of the appointment, it might go better. If your DR is unwilling to schedule time, does not seem to respect you, sees you as a "problem patient", you probably should find another DR since you are likely to see this DR for years. One person told me she walked out on a DR who said he was not there to listen to her questions.
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Candy - Excellent questions on how to “interview” another oncologist. I’m hoping someone in this forum can chime in. I’ll be reading their responses because I intend to change MO’s when I go back to Naples this fall. I just didn’t gel with my Moffitt MO last winter.I’m likely going to stay at the same facility which adds another level of awkward.
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Candy - the first time with BC (2009) I thought a lot about what wanted to ask. You might even have more if changing DRs/clinic asking about other treatment options. The Oncologist and Radiologist Oncologist were much more receptive than the surgeon, but the surgeon was also respectful and answered questions. Somewhere I found a list of questions to ask, and started from there. I added questions and rephrased some, and did not ask others. If you can get these questions to the DR ahead of time, it will give them time to have a better response, maybe aggregate questions. The second time with BC in 2016 with BC2, I changed clinics. The biggest reason I changed clinics, is that the first one would not let me do cold capping. The idea was so "controversial" that the board of directors met to discuss it. I was also very unhappy with the oncologist, he seemed uninterested in me or in discussing my questions. The other clinic had no experience with cold capping, and said they could not help me with it, but both the oncologist and surgeon were very interested in the DIY. The oncologist was a much more positive person and listened to all my questions. I looked at one other clinic out of state when considering DIEP, not available where I live. I would have done everytning there: chemo,bi-lateral, reconstruction. I ended up not going there because I was not a good candidate for DIEP. The surgeon I saw for the bi-lateral, even though I did not have surgery there, was increadible. When she walked into the room, she said she liked to hug all of her patients, and asked if she could hug me. During the interview, anytime we both started talking at once, she stopped herself, apologized for interupting me, then asked me to continue with my question. I hope you find such as person. I also found taking a recording device helpful. It is hard to take notes, you can get overwhelmed with information, not remember/misremeber things. It also help to bring a friend to see if you ask the questions you want to, and get answers.
https://ww5.komen.org/BreastCancer/QuestionstoAsktheDoctorPDFDownloads.html
https://www.webmd.com/breast-cancer/12-questions-to-ask-medical-oncologist
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Candy, thanks for thinking of me, I decided to call on Monday/tomorrow for results. Will report what I hear. I hope your second opinion goes well. You seem ready and practicing is a good idea.
Penny, I’m following your posts and hoping you get more answers about your startling numbers. At one point it sounded like an added med was thought to be the cause, is it now thought to be Ibrance? Hugs to you.
I have a mental list so far, for when I meet my new recommended MO in September. She is in a satellite office of my big hospital, a lot closer to home for me. I’m hoping I’ll still have the resources of the big hospital. I want to know what her thoughts are on local liver treatments (for when I have progression) and who/where will do it. I also want to know if she has access to a tumor board. I’m not sure if tumor boards are everywhere or not, but I liked knowing more than one doctor is giving their opinions on my care if needed. I want to know how she feels about supplements that I read about others taking. Of course, the big factor will be how I feel about our conversation.Candy, I hope you feel satisfied with the info you get, whether or not you decide to change to him. Well all be anxious to hear how it goes.
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Candy-678: in your pocket for your 2 hr trip each way tomorrow, plus for the interview of a possible new MO. Also will say prayers for you that God’s Wisdom will control your tongue. (I always give over my voice to Him when in uncertain circumstances)
One thing I do tell any new doctor is that I see the arrangement as a team venture. I tell the doctor that I will tell them about changes I have experienced or about new symptoms o side effects. I tell the doctor that I realize not all SE or symptoms will be applicable but the doctor doesn’t know how I feel and I don’t know what’s important and what’s non-important. I say as a team, we are working to keep me alive and that without my contributing, the doctor doesn’t know what’s happening inside of me.
I do tell them that I will ask questions and will read what I can find about my condition because no one will be more concerned/ vested in my life as me.
My current MO tells me all the time that decisions are mine to make and that he will make recommendations but that I am the one who has to live with the SE and that’s something he can’t do for me.
I have a calendar where I write SEs or symptoms on and bring it with me so MO can review.
I sure hope you find someone you connect with.
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Candy, I think you are well-prepared for your appointment. I do that myself, practice talking to the doctor when I am by myself. I think it helps me to be more concise at the actual appointment. I also agree with your not-too-emotional presentation. Your list of what you are looking for in an MO Is very good. If the MO you are speaking to is the kind you are looking for, they will not be offended by it but will welcome a thoughtful, involved patient.
There is one point that I think you might rephrase. “Not just the NCCN guideline” is going to cause a fight or flight reaction in many great oncologists. The guidelines protect them and you. I think what you are getting at is that you want someone who thinks creatively to individualize treatment for you, and practices not just the science of oncology, but the Art of Oncology as well. See, the guidelines do not spell out every single detail of what drug to use when and how to use it. A confident and smart oncologist knows how to individualize treatment without going too far off the rails. I will give you an example. When Ibrance + letrozole failed me, my onc and I discussed possible things to try. We both felt Afinitor would be a good idea. Now that is usually paired with aromasin. I didn’t feel great about using another aromatase inhibitor when one may have just failed me, so I suggested Faslodex. That is not the typical combo, but it makes sense. Many oncs would have said, “No, that is not what we use with afinitor.” But my onc said, “Oh, hmm, that’s right, there was that study...“ and got that combo for me. She is an author on the NCCN guidelines for breast cancer.
Finally, I do not think there is much danger of your coming across as a problem know-it-all patient, because from what I know of you, you have humility and are very considerate. (Only stupid oncologists would be threatened by you or anyone else who asks questions or knows something.)
P.S. While sending questions ahead can be a good strategy, I think you have more than questions; you need a live explanation and discussion.
ShetlandPony.
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Candy, you've received a lot of good advice here from our friends. Particularly Shetlands "not just the NCCN guideline" advice. You will know by the end of the appointment whether or not this new MO is the one for you.
Leigh
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Candy, I'm thinking about you for your appointment tomorrow. I will tell you at my appointments I'm able to ask every question I have, and if I want some kind of testing done, she truly listens to my reason why. She has not said no. After my MRI on Tuesday, I think I'll give her and me a break.
I hope you find this kind of doctor tomorrow, one who listens and doesn't just talk. Virtual hug.
RK202, I am so happy the DenTek is working for you. They can be tricky buggers to put on. I appreciate you letting me know, and you made my night knowing it helped.
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Thank you all for all your insight.
Bluegirl- I do not think there was an opportunity to ask the questions before the appointment. I have only met this MO once, in Oct of 2017. I do not even really remember what she looks like--LOL. I just called the office and told them I saw her in 2017, and what do I need to do to make another appt. Going forward, I could find out if emailing questions before my appts would be a good idea or if this MO works that way. I do not know how long I have for the appt. But I did tell them I needed to discuss my treatment plan and I think/hope they set aside enough time.
Dodgers- I am TRYING (hard to do sometimes) to be in God's will. If I am supposed to stay local, I do not want to jump ahead of God and move to the other MO. I know God can see the future and where I will get the best care. I have a tendency to want to do what I want. I like the idea of the MO making recommendations, but it is ultimately my decision. And the MO is ok with that. My current MO seems miffed if I do not follow her orders.
Shetland- Point taken and I tweeked my notes---"individualize treatment for me".
Thank you all.
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Candy - best of luck tomorrow! You are so clear and thoughtful with your questions on here I know it will go well. I am very interested to hear a recap.
RK2020 - so happy your mouth sore is healing! Isn't it amazing how much we learn from each other? It makes this experience so much easier to take.
Rosie24 - still in your pocket for results from your scan!
Penny78 - hoping you get answers soon and continue to get stronger while those numbers go back down.
My neutrophils were .67 after a week off of my 100mg Ibrance. Will retest next week. It's a bummer! My onc said we can go down to 75 mg. I really don't want to go off Ibrance to the V drug because I have minimal side effects on Ibrance (except for the low neutrophils).
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Candy - just chiming in to say don't forget to do something nice for yourself after the appointment. This is a long drive there and back and potential new Onc, etc. Its a lot of stress. Take yourself 'out' for lunch or something after to celebrate that you took this step, regardless of the outcome.
I forgot if you have this question on your list and don't want to lose this response here - but do you have a question on there to ask if the onc has experience working in tandem with more rural MOs and how she likes to manage those relationships.
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Sondra- Good question. I am thinking rural OR new MO, but tandem would be good. I will have to get her thoughts--- if one wants one thing and the other disagrees, how do you solve that? Such as, current MO wanted filgrastim shots, what if new MO did not. Then what do you do? Who decides? --- Wish I could go out for a good meal, but with COVID I do not want to do dine in. Pooh.
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Pick up and then enjoy in a park!
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I have been taking Ibrance for 1 year and my CA27-29 went down from 267 to 55 in February. I had 2 tooth infections ( need periodontal treatment on 1 tooth) and just anti biotic for the other. Since my Neutrophil went down my MO changed my dosage to 100 mg in May. After my periodontal treatment my June Ca 27-29 was 69 but my July went up to 84. My MO is scheduling me for a pet scan. My MRI scan in June stable. Should I be worried?
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My scans were stable, yippee 😊. No new activity.
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Rosie,
Yay for you!!!
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Awesome to hear Rosie!
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Irsreyes, I would not be worried yet. I think infection can cause tumor markers to rise. I had a bladder infection, and my 27-29 went up 76 points in one month. After it cleared, the next month it shot right back down.
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Rosie, that’s great news. Congratulations
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