Ibrance (Palbociclib)
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brutersmom I went every 2 weeks for the first few months. I am what my NP sister calls a "super responder": I respond atypically, very strongly to most drugs. It's great your team can track your response closely. My NP is better than my MD at tracking the exact dates for my blood work. But basically its at the end of my week off .
That said, thanks rk2020. I am a little scared to keep going off the Ibrance. A few months ago, she suggested that I might be able to goioff it n a couple years anyway. The whole oligomets thing is confusing. I hope the letrozole is enough for now. I am a little freaked out.
Hugs to all
Sondra, surgery recovery is OK. My abs are very weak and my shoulder is feeling volatile, like it may dislocated again. Big issue is rotatorcuf tear on other arm from over compensation after last surgery plus taking all the work after this surgery. I can't move it past 75* anymore, even with PT. I went back to work today, after 10 weeks. Kids gave me SO MANY hugs. But I kept having to explain that I might only be doing one arm, but they should do both arms!!! It is hard to prepare kids for a dance recital with only one working arm.
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dancemom thanks for the input. I am trying to sort everything out. I take few drugs because like you my body either developes a reaction or over reacts. Some drugs I need a children's dose. My MD was pleased to see how quickly my cancer responded to the meds. He could find no evidence of pleural effusion.
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brutersmom - There is nothing wrong with you telling the doc/np/pa explain EVERYTHING again to me like I am a new patient and walk me thru everything that is suppose to happen. Do not worry about that you missed something. Next time take a mini recorder in and ask if you can record what the doctor/pa/np is saying. Then you can listen to it again after you leave and if you have any questions about something they said then you can ask them thru your portal or call and get answers to those questions.
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Hi, all! I switched to Verzenio in December, because of progression (after almost 5 1/2 years on Ibrance), but still check back in here to see how y'all are doing...
Wanted to chime in re. the mouth sores - Ask your doctor for a prescription item called "Magic Mouthwash". Any pharmacist should know how to make it, it's got Benadryl (an antihistamine), Maalox (a coating agent), and Lidocaine (a numbing agent). When we had our pharmacy, we sold a ton of it, and people swore by it to relieve all kinds of mouth sores!
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Thank you rk2020, nkb, and sondraf for responding with your treatments. I hope to learn as much as possible before seeing my MO next month and then see what lies ahead, just in case. He did a liquid biopsy test (Guardant 360 CDx) and hopefully we will see results in a week or so. He’s looking for HER2 low since in 2010 when I had a lumpectomy it was either positive or negative for HER2 (I was negative). If I’m HER2 low then it opens up more treatment choices. I have a feeling it will be negative again. My cancer was ER+PR+HER2- the first time but now is ER+PR- with HER2 TBD. I just wanted to say thanks for being here. I read more than I write and feel close to everyone in spirit. My markers went down a little from 115 to 97 so maybe SBRT did some good. Stay the course....hugs to all....I’ll keep you posted. Sharware
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Cowgal, thank you so much for asking about the surgery. I think it turned out to be a bit more than they thought, but it’s over! I have 3 “long” screws throughout the hip along with the bonecement. There were several fractures. I kind of wonder if all this was due to cancer mets in the hip, or maybe some of it is that I am 62, on the thinner side, and had osteopenia long before cancer and estrogen blockers. Guess it doesn’t really matter. I get Zometa every 28 days now. Everyone has been so reassuring about the break from ibrance which was a concern of mine. Thank you thank you.
Nancy
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Believe60 - I am so glad you are doing better! I hope getting that surgery behind you and starting on the Zometa helps to get you feeling like you can get healed up and back to walking. I believe that Zometa may be like XGEVA that it can have some anti-cancer properties as well. Someone on Zometa may be able to answer that for sure.
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Aprilgirl-It was so nice to meet you in person. Glad you had such a nice visit with your family. I've actually been on Ibrance 6 1/2 years now!!! Time flies when you are having fun. Hope we all can squeeze more time out of this treatment.
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I love hearing about when any of our members here can meet each other in real life! Good to hear from and see you both here, Aprilgirl and Chicagoan!
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I started my second round of Ibrance this week and had my first follow up visit. Sorting everything out is challenging. I have been working through side effects of letrozole and Ibrance with the help of my MD and the dentist. Runny nose, dry mouth, irritated throat, and mouth sores.
This is the same cancer as the breast cancer, micropapillary CA but the make up is different. In 2015 it was ER 80%, PR 70%, HER2 negative, Ki-67 30%. This time it is ER was positive at 90%, PR was positive at 2%, HER2 was negative and Ki-67 was 40%. He said it has a protien that Ibrance slows or stops and believes it should respond well to Ibrance and letrozole combination. He is optimistic. My current oncologist is an interim oncologist with lots of experience in breast cancer. I have noticed that he is doing things slightly different then the protocols of the other MO's. At least that is my conclusion, based on my conversation with him and the assigned nurse. He is a bit concerned about my white count and wants to monitor it more closely this month then last month so he can determine what adjustment he needs to make. He feels I am at risk for my white count to drop to low this month. My CA27-29 dropped 23 points which is a good sign.
I feel good, tired but good. Night sweats are interfering with sleep. I just feel like it is a lot to take in. On the bright side I have started back to the gym this week after being cleared by my medical dr. last week. My lungs have remained clear for almost 2 weeks which is a big plus for me. As for the night sweats, I want to see if working out on a reqular basis will minimize them before I add another drug to my list.
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ciaci, We talked about different things. I am on 125 second cycle. He is going to do blood work weekly to see what my white blood count does. When he feels it is to low he is going to stop Ibrance until it goes back up again. He did talk about changing the dose. Depending on what happens. Thanks for asking.
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Newly built (last 5 years or so?) require only private rooms be built due to Hipa rules-
vast improvement and so true.
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It really does make a difference to have a lovely room with a view. I hate being in hospitals, but, having the beautiful room with a view and nice chair and private bathroom, window seat, automatic window shade closes at night, opens in the day-
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One week into my second cycle and my doc had me do blood work at the end of week one because he had some concerns. My labs are interesting. All of these are low
Bilirubin .2, AST 12, white cell 2.4, RBC 3.56, Hemoglobin 10.9, Hematocrit 32%, Neutrophils 1.22. He said depending on these numbers he would decide if I stopped right away for 3 weeks, stopped next week's for 2 weeks, and probably lower the dose.
Now it is a waiting game until I hear from the oncology department.
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Hi brutersmom
What is the dosage you’re on? Many of us started with low numbers and were reduced from 125 100 or 75 pretty quickly with the same efficacy of the drug.some others the interval changed, instead of 21 days on 7 off, some did every two weeks then a break for a week. There’s a study on this thread about studies that recommended this.
All of this is part of the ibrance dance. Take good care of let us know how you do.
Tany
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Has anyone been getting cramps being on Ibrance? I have been on it for 4 months and in the past two weeks have been getting cramps.
Thanks,
Gina
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luvdbyhim. Are you referring to leg cramps. I get them but I am pretty sure it is from letroze. Just found out today my sodium is low which cod be the cause.
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thanks brutersmom. I wonder if it from sodium? I do not use alot of salt in my diet and actually was baking bread today and thought I need to add more salt next time I make this recipe! LOL
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I get cramps in my legs from time to time. I try to make sure I’m drinking enough water when I’m getting cramps
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it's hard to know. I am usually well hydrated. There are four possible causes that I know of, hydration, sodium, potassium, and magnesium. I have high blood pressure and try to avoid salt. I am sure Ibrance or letrozole can interfer with any of these.
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Thanks cowgirl and brutersmom. I have been trying to increase my intake of water. I use liquid iv here and there to help with the hydration. I am trying to get up to 80 ounces per day. I used to drink a gallon a day. I will work on the potassium and magnesium also.
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luvdbyhim,
I have not had that experience with Ibrance. 26 years ago when I was pregnant I got leg cramps and it was believe to be due to low potassium, from what I remember. I hope you can find an easy solution to this!
I just had my quarterly pet scan/CTscan with contrast and they are clear, "no evidence of residual or recurrent metastatic disease". I am very, very thankful and started up my 40th month of Ibrance last night. I know this can change suddenly. My oncologist told me I can spread out my scans a bit since things have been stable for a while BUT I think I would worry more having them less frequently. IDK if that makes sense to anyone, but I would rather know quickly if things are popping up. I think there is no right or wrong answer to this and we all just have to do what makes sense to us (and what our insurance will pay for).
After being slightly moody for a few days leading up to my scans I have renewed energy to get stuff done in this next 2-3 months. Living with stage IV disease is really something none of us thought would be our reality and it is just a lot....I just keep trying not to get too far ahead of myself and I know you can all relate to that feeling.
Hope you are all doing as well as you can and spring is on it's way!
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Hello to all. My reason for popping in this morning is to share this message from the Mods that has been posted on the forum. I want to make sure as many people see it as possible. Please spread the word.
Important update:We're very close to the launch of our new community forums! The conversations that have been shared here over the past 20 years will be waiting for you in the new forums.
During this migration, which will begin on March 12 and end approximately on March 23, all newly created threads and posts will need to be moved by the mods to the new forum through a manual copy and paste process.
Unfortunately, we can't migrate private messages you send and the threads you favorite during the migration period. Please copy and paste any private messages you'd like to save for yourself in a separate document, and write down any favorites you want to bookmark in the new forums.
We thank you for continuing to be patient with us through this process. We're doing our best to make sure all conversations continue and pick back up where you left off on the new forums very soon!
--The Breastcancer.org Community Moderators
March 9, 2023
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Wow - oh how I hope we get a better working forum again! Please, please, please let the new one bebetter!!!!
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Aprilgirl1 - great news! yes i think it is what insurance will pay for and what helps you sleep well at night. For me I would rather go 4 months for a scan than 3 because then I have 4 months of no scanxiety. LOL. But you are right everyone is different. Great news on scans.
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Wonderful news, Aprilgirl!
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April girl. That is good news.
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Aprilgirl - Congratulations on the scans! I have been moved to yearly scans after my last scans. My next scans are early April and yes, I have scanxiety!
I think that those of you that mentioned potassium as a possible reason for cramps might be right in my situation. I sometimes have bloodwork that checks my potassium level and it sometimes runs low and my oncology nurse will tell me to try to get more so I probably need to make sure that I keep my potassium up as well as drinking plenty of water. I'm sure in my case that while I don't salt food hardly at all, I probably get enough from the tortilla chips that I shouldn't be eating.
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I’m on a diuretic and potassium. I was still getting leg cramps. Cardiologist suggested adding magnesium too. Just started that yesterday so don’t know yet. Can try eating almonds and other nuts too.
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@DivineMraM - thank you for posting , I had not seen this message as I generally just jump to the stage IV threads. I have to say I have some concern about the transition as when this happened last year (was it 2021 or 2022 ?) it was such a challenge ! I recommend any of you who can join the zoom (by smart phone or computer ) try to join one . They are super helpful , too.
All, thanks for the congratulations on my scan news. I appreciate all of y'all and I've never lived in the South;)
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