Ibrance (Palbociclib)
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Stefanie I take mine with dinner also. I am far too rushed in the morning and many days don't eat a big enough breskfast. When I first started on Ibrance\Femara I had slight nausea and headaches. Taking it at night avoided all that. I have sleep issues also and have experimented with various herbals which seem to be helping. II've fround with most drugs it just works better for me to take in the evening.
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I'm on my 5 th cycle of letrozole/ibrance and no hair issues. I take my meds after breakfast each morning. Since I was getting leg cramps, I found that those were worse at night when I took the meds at night-hence the change.
I am still working on the crazy co-pay situation. I spoke with Humana and they can't help me. My MO's office is looking into help-nothing yet. CVS Caremark, who had told me I was eligible for the $10 co-pay but then I wasn't, told me about an assistance program for those in a household of 2 that make under $80,000 combined. They don't know of any other programs. I have a call into Pfizer and will advise what I find out there.
Today I got the results of my PET/CT scan from Friday. My MO is away so after 3 phone calls by me, her nurse called and said that the Dr looked at my scans and that I'm stable and should stay on my current meds. Upon questioning her further-I needed to know if stable meant my malignant lymph nodes were the same size or smaller- she advised that the malignant lymph node in my super clavicle area had grown, but not a lot. I then asked if there were any new areas of "activity" and she said there were 2 new spots on my spine. Is it me or what but does that seem stable to all of you- 2 new spots and one enlarged spot???? I am besides myself!!! I asked for my MO to call me ASAP upon her return. Just very scared at this point.
Babs
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I'm only on cycle one and no thinning yet, however my hair has thinned and I have small bald spots from being on Faslodex for 5 years now.
Question for everyone.....I had Zometa IV 2 weeks ago and am experiencing severe hip joint pain. I see my MO today. My nurse said if it isn't better this morning I will be admitted for IV morphine. Has anyone had this? Anyone taking Faslodex and Ibrance?
Babs.. I hope you get clarification and answers soon. It is so frustrating to get that kind of report from the nurse.
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Stephanie, I also take mine with dinner since it is my largest meal of the day and usually around the same time. Do you think it could be the Letrozole causing the insomnia? I have not had this issue but when I told this 7 years ago, insomnia was mentioned to me as a possible side effect.
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Stephanie, I also take my Ibrance combo after dinner since that is my largest meal and usually my most consistent times. I do not have insomnia, but I do get some killer leg cramps, especially if I don't drink enough,m(water that is).
Babs, perhaps the MO was trying to keep you calm until they returned and could go over the scan more thoroughly with you. I know how horribly frustrating all this must be for you.
My hair has not thinned, as a matter of fact, with all the supplements I am taking, both the manicurist and hair dresser commented how fast it was all growing.
I want to thank you all so much for your love and support over the last few days. I don't know you all by face, but I feel I know you by heart.
Myra.
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Lindalou I have been on Zometa for years and have never had that type of pain. I know that could be a side effect, but any discomfort that I've had has been minimal. Also any slight discomfort has been in a few days after and not so long after. I hope you get an answer to the pain and that you get some relief.
Babs I can imagine how frustrating this is to you. Hopefully you will get some answers soon from your MO. Could it be that other areas have gotten smaller, so that's why your MO is saying stable?
Regarding the insomnia which has also been an issue for me. I reviewed all of the supplements I am taking with the holistic pharmacist and have changed when I take many of them. There are several that I am now only taking with breakfast and lunch, since taking later in the day may be intensifying the sleep difficulty for me. The good news is that it's somewhat better. Taking a combination of herbal supplements and Metatonin for sleep. Also for me, having wine with dinner was not a good thing. When the wine would wear off, I would have difficulty getting to sleep. Sounds crazy, but wine can have that effect on me and apparently I've been told that it is not unusual. I was on Femara for almost five years previously and don't recall having insomnia. Perhaps it is the combined effect of the Ibrance/Femara?
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Folks, thank you for your replies about the hair loss--it is very reassuring! Will let my mom know.
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An excellent researcher and mbc friend of mine named Stephanie who sometimes reads these boards wanted to share information about IBRANCE and hair loss, as follows: In the PALOMA-1 trial that led to FDA approval of Ibrance, 22% of those taking both drugs ((IBRANCE and Femara) experienced grade 1/2 alopecia (hair loss) vs. 3% taking only Femara. From: http://www.pfizer.com/news/press-release/press-release-detail/pfizer_receives_u_s_fda_accelerated_approval_of_ibrance_palbociclib
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Spoke to my MO today. She said that the enlarged lymph node is just 1 mm larger and could just be a result of a different view or slice that was taken. The 2 more active spots on the spine are not active enough to be determined to be malignant- they're not definitive. So therefore I'm considered stable. She wants me to stay on the ibrance/letrozole combo and I'll have repeat scans to make a determination on the spine spots. We're meeting next week to discuss everything further and to decide when I'll have the repeat scans done. Waiting waiting waiting rots!!!!!
Babs
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The numbers are in. My WBC has dropped a lot. On the 10th, I was hanging at a very healthy 10, today I am at a 4.1. Even though this is just above their bottom number of a 4, it shows up on the portal in bright red with a # sign. Of course, there is no legend so I have no idea why there is a # sign. The rest of the CBC panel looks pretty good with numbers within the normal range, but in general heading in the wrong direction.
I fully expect to get a call from the doctor or her annoying PA tomorrow. At what number do they start talking about stopping the cycle? I really don't want to do that.... if at all possible.
*susan*
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Hi Susan, my lab posts normal range to be between 3.4 and 10.8 so I would think you have some room to drop. I believe people have dipped pretty low, even into 1s and 2s but bounce back in off cycle. Is this your first round and what dose are you on? Here is information on dosing protocol if it helps:http://www.drugs.com/pro/ibrance.html
Joanne
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Susan, I would be dancing in the streets at 10 OR 4. They stop me at 2.0. ANC is the more important number for my onc. Myra
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Myra,
I don't see anything called an ANC on my panel. Any ideas on other names for this? [I am not much of a dancer, but I could start in the morning.]
*susan*
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Susan, ANC is absolute neutrophils count. It should say neutrophils (absolute) on your results.
Joanne
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Okay.. that is AbsNeu on my report .... and I am at 2.28.... and the normal range is 1.6-6.1. So low, but not red on the screen.
*susan*
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Here is a link to go with jjski62's link for the Ibrance protocol. It shows the number range for each grade (1-4) of out-of-range lab results. So you can see how severe or not your numbers like WBC or ANC are, and guess whether your onc is likely to say your dose should be lowered or your cycle delayed. It's probably TMI for some, but I feel more secure when I can understand more about what my lab results mean. (Disclaimer: I have no training in this, but it looks like the right chart to me.)
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Thanks Shetland! I bookmarked the link. Very helpful.
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They stopped me when the WBC were 2.1. They let me continue when they were 2.5 so the cut off must be in there somewhere. On my week off, they went up to 4.8.
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Hi everyone, Can hardly keep up with all these posts,
Thanks for the info on blood counts, Shetland pony. My neutrophils were only 1.23 at the last visit to Dana Farber, and my onc kept me on the 125 dose of Ibrance with letrozole. I am on my 4th cycle (will have scans 7-1 to see how it is working). Very nervous to have the scans, good thing I am so busy I don't have much time to think about it.
Good Luck Myra with your scans, I think you have them around the same time as mine. Praying for good results for you and everyone. Try not to worry and just take things one day at a time, otherwise it can be overwhelming.
Romansma, hope your aunt is doing better. My friend (was my babysitter and next door neighbor as a kid) almost died from chemo (was done to about 80 pounds) about 9 years ago, but she made a miraculous recovery and looks great now and is doing amazing (in fact, she is the same friend who found out about Ibrance getting FDA approval just as I was needing a new drug).
I have not had bad leg cramps in a long time, but they were very bad last night - had a glass of wine last night for the first time on this drug, and it must have dehydrated me. So everyone keep hydrating!
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PA just called and stated that my blood work is perfect. So, onward!
*susan*
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Yeah Susan!!!!!
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Woot! Woot! Great news Susan!
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Susan,
"Perfect!" Take it to the bank!
Tina
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Go dance in the streets!! Myra.
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The balls of my feet are too sore for dancing, but, my daughter made me some lemon sorbet from scratch. I think I will enjoy a small bowl this evening. Evidently, I should anticipate finishing this cycle, and starting the second cycle on time at 125mg.
*susan*
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I will chime in... I have had three cycles of Ibrance with NO change in hair. I have also had significant neutropenia and am hold til next week on restarting Ibrance. I take my Ibrance and femara at lunch. I attempt to swallow them in the middle of my lunch. But if I do not take them til evening my insomnia is increased. My tumor markers are at 7- hurray.. hope this helps. Carolyn from Music City
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Enjoy your sorbet Susan. Love lemon sorbet and homemade sounds wonderful! Great news on your bloodwork.
I am ready to leave the office for a much needed and much anticipated vacation. So I will be celebrating tonight with a bottle of beer. Do love it but try not to have too often.
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I applaud all of you who have been taking Ibrance before me. I am truly awed by your strength and your bravery to begin this new drug. My WBC is 3.2 today so my MO doesn't want to start me on it yet. I will remain hopeful and continue to be guided by all of you. On a side note, Northern Lights are supposed to be seen in my area this weekend. Certainly worth a 3:00 am outing don't you think? Linda
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Go outside Lindalou! Enjoy your sorbet Susan and ur beer Dorothy. I imbibe in a glass of wine every night. My one vice.
Went to the Intervention MD today. He thought I was crazy spending money on Infrared Saunas. He told me I had to do cardio to raise the heat of my blood naturally with exercise. 5days/30 minutes per day. He put it this way, Ibrance and Letrazole were the nails and exercise was the hammer. Made tons of sense, perhaps that was why my aggressive BC stayed away for 16 years. Was a total gym rat then, slug now. Anyone want to guess where I will be tomorrow morning?
Hugs to all! Myra.
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I have been on Ibrance for 9 days now and AI for 3 weeks. No side effects yet. I have trouble swallowing pills but have been able to get the pills down until tonight. The pill broke so I spit it out because the nurse from Express Care drug said not to swallow the powder. Very disappointed in myself. I have a tumor sitting on the lining of my ovary and it is pumping fluid into the belly. I have to get a paracentsis tomorrow. This is will be the 5th one in 7 weeks. Anyone else have to get fluid drained?
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