Ibrance (Palbociclib)
Comments
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dsodasso, if your neutrophils are 1 or above they're usually okay with keeping on the Ibrance schedule.
Neutrophils are not quite the same as white blood cell count but related. I could be wrong but I think the neutrophils count is called ANC on the report. Someone, please correct me if this is wrong.
I use melatonin to help me sleep. My oncologist said it was okay but check with your doctor. I use a 1.5 mg dose and usually that is enough but I can take one more if needed during the night. Just make sure you have three more hours to sleep after the last dose. I've seen others here who use higher doses of melatonin and I might do that some day. Sometimes I use tylenol pm if I have pain.
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dsodasso I am like you and don’t have pain. I think surgery comes when pain is relentless? I could be wrong about this.
My WBCs dipped a teeny bit below 1.0 (1000 count) in the first few months so my MO lowered me from 125mg to 100mg and I’ve been steady above 1.0 since. This is the normal Ibrance protocol is numbers dip too low.
As far as insomnia, I take 20mg of melatonin as prescribed to me by my ND. It knocks me out about an hour after I take it. I also listen to meditation podcasts to help me settle down and relax. When I wake up a lot through the night which is pretty much every night I put another meditation or soft talking podcast on and pass out usually pretty fast again. Sleep has been an issue for sure.0 -
Leapfrog;
I've been thinking that I was harsh and judgemental in my comments. I'm sorry. Wishing you all the best.
Cathy
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I get blood work tomorrow and its been almost 2 weeks and the only side effect so far is a tender scalp...has anyone else seen this side effect?
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Yes, I have. It happened a half dozen times. I am on my 19th month.My MO wasn’t impressed. It didn’t last long. Curious as to what your MO will say to you.
Suzy
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Buzzy, yes, my scalp is tender off and on, and I am on my 26th cycle. But it is minor and doesn't bother me much.
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Yep - my scalp is tender, and I can hardly tolerate the hairdryer!
So I had a nuclear med body scan test Monday. I have an appointment to discuss the results with MO on the 30th. Because I didn't want to wait that long for results, I badgered the nurse to set me up an appointment with the new RO, and I met with him yesterday. He says the scan shows a small amount of increased activity, and he says that's a win. He says that he'd recommend that I stay with the ibrance/faslodex/xgeva that I'm on now.
I'm interested to hear what the MO will say on the 30th. I was hoping for NO increased activity. When I went to the University of Michigan cancer center for my 2nd opinion, the MO there said that she agreed with the ibrance/faslodex/xgeva, but that if my scan showed that it wasn't working, she'd move on to something else (which probably means infusion chemotherapy – yuck!)
I guess I'm cautiously optimistic – I'm going to focus on the fact that the RO says the results are good, but I'm not going to start celebrating until I meet with the MO.
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I had my monthly blood work yesterday and everything was fine. I'm ready to start Round 6 of Ibrance/Letrozole tomorrow. I am thankful for this medicine combo and I pray I can take it for a long time. I have SE's that are from the Letrozole but I'm trying to tolerate them. I also had the monthly Xgeva yesterday too.
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good morning wonderful people!
Does Ibrance cause insomnia?
I know I’m on a lot of meds that can mess up my sleep (letrazole, lupron)...but I was off Ibrance for about 2.5 weeks because of traveling and just started back on cycle 16 here. I feel like my sleep is awful.
Just curious if insomnia and/or sleep disturbance sleep a side effect. Thanks
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Philly and others who have posted about insomnia-I don't know if it was the Ibrance or Letrozole but after being a 40+ year coffee drinker, I became extremely sensitive to caffeine. I have now cut caffeine out completely and have no more issues with insomnia. KInd of a drastic solution but I find I don't really miss it. I have decaf coffee if I'm in the mood for it.
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My wife has terrible sleep problems. No idea if its the ibrance. Some times its from neuropathy from her previous chemos. Burning feet and hands. Now, she has terrible itching.
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Happy Friday (though for those of us retired folk, it's always Friday
)! My 2 cents are - sleep is too important to not happen, therefore I finally succumbed a couple of months ago, and now take a 5 mg of Zoplicone (Imovane) nightly around the same time, read for 10 minutes, then shut down. I generally get 3 -5 hours unbroken sleep, and fall back to sleep when I do awaken around 3 or 4 am...There are other less habit forming sleep aids out there, and I highly recommend trying something, it has helped with my well being immensely. I figure if I am 'addicted' to a sleeping pill, it is not the worst addiction I could have...0 -
Philly et al., yes, sleep problems seems to be a se from Ibrance. I know if I have iced tea with dinner, I am going to have extra trouble getting to sleep, so I take a Benedryl before bed since it doesn't matter when I wake up in the morning and I can sleep until I am no longer drowsy. Sometimes I take a half one if I want to make sure to go to sleep before a busy day. I wake up fine from that. My DH says it is a placebo at a half, but it works for me. I usually sleep well once I get to sleep although I wake up at least twice to pee every night. Last night I fell out of bed getting back in from getting up and I didn't take anything before bed. But I did have an infusion yesterday so I am a bit weak today.
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Once again I come to my sisters ( and brothers ) in this crazy world we now find ourselves in to ask for advise.
When we talk about "progression" it is usually to another organ - brain, lungs, liver, etc., but can we have progression to the other breast, formerly cancer free?????
The reason I ask is, at the mammogram I had to find the cancer last spring ( 2017 ) the cancer was in the Left only. We did a mastectomy on the Left only, and thought it was Stage 2. Then we found out it had metastatized to the liver and bone. This summer I asked my MO if we needed to do my yearly mammogram on the remaining breast and she said no. Now, I am having some soreness under my Right arm and into my Right breast. No lumps, no discharge, no skin changes. I mentioned the soreness to my MO and she did a manual exam and told me to take ibuprofen. She said " I don't really want to do a mammogram" but didn't further explain. My CT chest, abdomen was ok last month and my TM's are pretty stable--fluctuate 5 points up and down over last few months. I am probably worrying too much and the soreness is probably nothing, but every ache and pain anymore makes me think the cancer is growing and spreading.
So can the cancer progress to the other breast, but no signs of progression anywhere else???
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Philly: my sleeping issues are mainly caused by the Letrozole, because my insomnia is getting worse during my week off Ibrance. Since Ibrance causes fatique, it kind of equals out the insomnia for me. However, I have to be careful not to take naps during the day, otherwise my nights are aweful.
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Candy. Sometimes docs base whether they want to order a test on if they would change treatment based on the result. So, that might be her reasoning. Personally, I would push for the mammogram. There could be something there and it might even be different as to receptor studies. It's not an expensive test and it, at the very least, would be a relief for you to know. It might not be metastatic, it could be a different type of breast cancer. Or, nothing at all. I think it's well worth it to have it done.
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Candy, what Grannax said is true. The cancer in my left breast was ER PR Negative (? on HER2 because it was before they knew about that). My second cancer in the right breast years later was Triple Positive. Then the metastasis was ER PR Positive and HER2 Negative. If I were you, I would want to know what I'm dealing with, if it's anything at all. (Remember that the great majority of these oddities aren't cancer at all.) You don't have to have a referral from your oncologist to get a mammogram. Your ob-gyn can do that. I wish you the best.
Love from PatG
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grannax and PatG - you are both soooooo full of kindness love and wisdom. Even though your not necessarily responding to me, I always feel loved and cared for when I read what you write in response to others. These characteristics of the heart are true gifts!!
Thanks to all who responded about insomnia. IntoLight - I hope you didn’t get bumped up too bad when you fell? Are you feeling any better from the infusion? Sending a hug friend.
Chicagooan- I used to be very caffeine sensitive too! But then when I started taking the cancer meds, it sometimes barely makes a dent. But recently I’ve noticed that it is affecting me more. Always up and down! I go on and off it. I like to drink tea a lot in the winter and usually get sick of coffee and take multi-month long breaks. Right now it tastes too good in the early morning and I can’t really form sentences without my morning cup. (No I am not addicted!! 😂)
Yes definitely a combo of the Ibrance and letrozole and lupron are causing me to be a total insomniac whereas I used to sleep soooo well!! Time to figure out how to make this more fun and interesting!0 -
MuddlingThrough and LovefromPhilly..thank you. My counts were not good after my full week off. WBC was still at 1.6 but my ANC was still below 500. I already received my 125 mg, so the plan is now to take another week off and recheck blood work next Thursday. My doc said we could try the 125 again but check blood after 1 week and see how it's going. If it goes too low again we will decrease dose.
I am taking Somnapure now for my sleep. I still wake up several times, but ususally get back to sleep after 15-20 minutes. I may also try going to decaf coffee and tea or find something else palatable to drink. Chemo really ruins my taste buds and water tastes awful and I don't do soda and am trying to avoid my nemesis, sugar. I somewhat do the Keto diet, but not too strict on it. On occasion I will eat a piece of pizza or I just have to have some pasta. I have given up most breads and grains or just have them on special occasions.Using erythritol if I feel I need sugar or in baking. Anyone have a similar issue with water tasting bad? Suggestions for a drink that tastes good?
Best of luck peculiargirl. Hope you don't have to go back to the IV chemo. I would have a tough time deciding that one again. Maybe one of the other new drugs.
Doctor is also going to add Xgeva to my regimen. I see many on here take something to help prevent bone fractures.
My best to all of you.
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Thank you, LovefromPhilly! What a lovely thing to say!
dsodasso, I'm glad you'll be taking XGeva. I'm a believer in anyone with bone mets taking something to prevent fractures. I think the day will come when everyone will get a bisphosphonate or something similar as adjuvant therapy to prevent bone mets. The one bit of advice I'd give you is to get a complete dental check-up to clear up any problems. The percentage isn't huge but some people end up with necrosis in the jawbone after a long time on these drugs. (I will add that I have friends who've taken them for decades without any problem.)
Love from PatG
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lovefromphilly. What a nice compliment, thank you.
I have sleep issues too. I just go straight to the Ambien. If anyone could seriously hate a pill, I hate letrozole. It messes me up in so many ways I can't even count them. Turns out it is not even helping me. I have ERS1, therefore I'm resistant to AI. But, because FDA says it has to be RX with Ibrance, I still have to take it. I have threatened to throw it it in the toilet but haven't done it yet.
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dsodasso, I still drank mostly water when nothing tasted right but I would often put some lemon juice in it. I had coffee every morning, and still do. I drank a small glass of orange juice or pomegranate-cranberry juice, real juice. The tangy flavor seemed to taste like it should. You're avoiding soda and I limit myself to one real Coke a week, not diet. My body cannot tolerate artificial sweeteners!
If you like citrus fruit, slice an orange, lemon, and/or lime into a pitcher of water.
Edited to add a caution about pomegranate as it might interfere with Ibrance. When I drank that for flavor I wasn't on Ibrance. Also, some folks like coconut water. That might appeal to your tastebuds.
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Grannax....for what is worth....I also have ESR1, but I did very well on letrazole for two years by taking half the reccomended dose. The 2.5" tumor disappeared and has not been seen again since....
The full dose made me feel terrible, thus half dose, I figured on my own, half was better than nothing. AndIt worked!
It's important to remember that all these TX are based on conjectures and results so inconsistent and unpredictable they defy logic. We are over medicated. But this is unfortunately the state of the arts, based on clinical trials conducted years ago.
For example I have also the AKT mutation, but instead of greatly benefitting from Afinitor, the targeted therapy for that particular mutation, I experienced terrible SE and a tripling of TM that have not gone down since!!
Not only it was useless, it was outright dangerous for me. “Scientically speaking" in clinical trials it has not improved anyone overall survival time. So why do they prescribe it? MONEY! That's why!
You can't make this stuff up! God bless capitalism
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Hi all - it’s been about a month since I’ve been on here and I sure have missed you all! Thanks for all of the laughs (boxer shorts and ocean waves and art show critics) and as always the great information shared. I pray for all of you daily even when I take a break from reading or posting. I’ve just been pretty busy with work and vacations and trying to enjoy my NEAD life as much asI possibly can, while I feel good and have no progression. I learned that from all of you so thank you for that!
To address Candy’s question.... I’m about 7 months into MBC and my MO mentioned that he needed to get me the script for my annual mammo and Breast MRI and I was a bit shocked... I said, you mean even with all the PET and CT scans, and meds I am taking, we will still do those? He said they are not focused on your breasts when they do those scans so of course we will continue checking them. This made me very happy and made me feel somewhat normal for a moment. So i would demand a mammo - especially if you have concerns.
As far as spread, my understanding is that ductal BC does not “spread” to the other breast; it goes elsewhere. The concern with anything spotted in your other breast would be a brand new early stage breast cancer. Hugs to you as you navigate this!
Lauren
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Some pics while we were away in Colorado for Vietnam Heritage camp for my adopted son and his 2nd place win at a baseball tournament at Rehoboth Beach, DE
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miaomix. So, there goes that theory! We just can't win. My MO has some theories that are exclusive to her. She thinks it's Ibrance alone that is working for me. I said good I will throw L away. No, no there might be some synergistic benefit. I think she just didn't want to be quoted on her theory.
I remember us talking about this before. If it's just theory then why are we paying who knows how much for the tests? Oh yes, greed. I thought it was the next new thing.
I'm staying w my MO because my scans are so good no other doc would want to change treatment. If it ain't broke don't fix it! I have another PET in two weeks.
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Lauren H. You have a beautiful family! Your son is an amazing pitcher. Glad you enjoyed your vacation. Glad to hear from you.
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I'm sticking with my MO as well Grannax, because from what I read on these boards, except for some really bad apples, they think, respond and behave similarly. No one is thinking outside the box and if some of us are NED or survive longer there's no rhyme or reason as to the real causes. So much for science
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Lauren, great pics! Your son looks like a joy to be around. I haven't heard such a good reason to continue a mammo before. I suspended mine last year because I thought it was just duplicity and my MO easily agreed. I will check with her in a couple of weeks at my next appt.
Grannax, I am right with you with my next PET in 2 weeks. We can stress together!
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We're three days into the "great Wisconsin to the Chesapeake Bay boat trip" and so far still on the right side of the water! And still speaking!
Muddling, I don't think that we're supposed to be having pomegranates in any form. It increases the action of ibrance.
Grannax, good luck on the scan!
Candy, I agree with Lauren on the mammograms. I think you should continue to have them.
Lauren, your family is gorgeous and so is your pitcher!
Hugs to all-
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