Ibrance (Palbociclib)
Comments
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DC. Your breakfast may not have been enough. You should do fine this week on the hormone only if not you could have a virus. I know it's hard to tell.
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DC sorry you didn't do well on day 21. I switched to taking Ibrance with dinner as it stayed down better (as I'm not hungry at breakfast). Shetland - yes to adding a halo for a performance! They have several kinds, a fall which clips to your head and gives volume to top and length, and the snap around which adds length really well, but you need hair on your top (see the clip-in demo on their website below). The weight is very light compared to a wig and halos use human hair which looks natural. While I'm sorry to be in a hairpiece, I'm happy for hair which allows me to go to work, etc. with none the wiser re: my health.
https://www.halohairextensions.com/usa/clip-in-hair-extensions.aspx
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Thanks for the warm welcome jobur and shetlandpony. I'm sorry we are all here but glad we have each other for support. I have been a lurker on this site for the past year. I've only recently chimed in on some posts like mdillard04's post regarding possible mastectomy/lumpectomy but I didn't really introduce myself so I will do that now.
I was diagnosed with de novo stage iv breast cancer with bone mets in June of 2014. I was 52 yrs old, post menopausal, and had never had children. Since I was stage iv at initial diagnosis I did not have a mastectomy or lumpectomy as it is not the "standard of care" to do so. Tamoxifen was my first line of treatment along with monthly infusions of Zometa for 6 months and now just every 3 months.
I had a really good run on Tamoxifen (18 months) with virtually no SEs (an occasional hot flash and a little fatigue) and a pretty darned good quality of life overall. Unfortunately my most recent scans in December showed minor progression in my spine and thickening of the overlying skin of my breast tumor (for which I am contemplating a lumpectomy). As we know, progression means change in treatment. So here I am on the Ibrance/Letrozole protocol.
I am just starting the 3rd week of my 2nd cycle. I have to disregard any side effects I thought I was experiencing in the first cycle because they were clouded by emergency gallbladder surgery. I was attributing side affects like nausea, burning in my stomach and general malaise to the new protocol until the gallbladder attack proved to be the true cause. So far my second cycle is rather side effect free. Mornings are hard. I'm very tired and find it hard to get going but once I'm up and out I'm good. My WBC has dropped and that is to be expected but it is not at a scary place (yet?). I haven't experienced any nose bleeds as others on the thread have reported. I expect that the side effects will change over time. I'll continue to report any new side effects.
So far, so good...
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DC197
I have dry heaves pretty often and tend to vomit a small amount about 3 to 4 times each cycle. Onc and I discussed meds for this but I am going to try more natural options first. I am hoping they may help.
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There is an interesting article in the Wall Street Journal called How researchers are taking aim at metastatic breast cancer. You can Google it or try this link: http://on.wsj.com/1QhZtq7
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DC, so sorry you had that experience. During my early cycles (I just finished #6), a few times I would throw up in my throat -- weird, but it never actually came out. But the more suspect med to me is the letrozole. I had such a violent bout of nausea with that back in 2009, it actually triggered a passing out episode -- as I was standing in line at the post office -- and totally turned me off on taking any A/I back then. Have you had any nausea during the past 3 weeks -- maybe just not as bad? If it does turn out to be the letrozole, switching brands might fix the problem.
I also found a supplement that seems to help with Ibrance food issues. It's called DGL Ultra. My hubby had picked up a sample for me in a natural foods market, and I bought it on Amazon. It's a tablet you chew -- ideally prior to a meal. It tastes great and does seem to help with the bloating, although last night I made veggie burgers that were heavy on sweet potatoes and black beans, and even though it was day 23 for me (off Ibrance), I suffered and looked 5 mos. pregnant after I ate dinner. But I also sat there watching the Grammys for several hours and didn't move around.
AC, nice to meet you and welcome to BCO. I am so sorry about your de novo dx. That had to be such a shock. But glad you're tolerating your current regimen well, and happy you've found us here.
lalady, thanks for the tips on halos and other hair pieces. Wigs are hot, especially here in the desert, and I never would have known or thought about a lighter hair piece. It seems like a small thing that can make a big difference in how we feel about our appearance.
Kaption, I saw that yesterday, and all I could think is, YES!!! Thank God! We are finally being heard! We must all keep up the dialogue started by Holley Kitchen and continue to beat the drum for more research on mbc! Deanna
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If anyone is taking Nexium or anything like that for Ibrance-related digestive issues, here's some new and important information...
http://fortune.com/2016/02/16/heartburn-drugs-deme...
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Hi Ibrancers - I started Ibrance with Femara last May, first at 125 then moved to 100 in July. My August scan was stable, and November scans were stable with some spots being a little smaller. Today I got the results from my February CT and Bone Scan. No progression, spots in my lungs are stable and there has been marked REGRESSION in the spots in my bones (lower spine, hip and rib). This is the first time that the word regression has been used! I am so thrilled. Praying for continued good results for us all. God bless you all on this board. You are an invaluable source of information and comfort.
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Zimmer, that is wonderful! Congrats. Encouraging for all of us.
Dlb, I have seen that information on Prilosec type products. I've been on it a long time because I used to have Barrett's esophagus. (It's not supposed to go away, but it did!). Bad news is, it's very had to get off Prilosec when you are on it more than the prescribed time. Used to say there were few se. Now, kidney damage and possible dementia ( in those over 75-but that study needs a closer look). Anyway, I tried to get off about a year ago. Guess I'll try again- harder. Going to talk to my onc next time I see her. Good news is my kidney function is checked regularly.
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I was on Nexium for 7 years because of esophagitis. Last summer I weaned myself off of it (took 3 mos. of misery) Did the whole apple cider vinegar/water thing, but it didn't really help. Then I started the Ibrance and experienced nausea, stomach pain and couldn't keep anything down, so went to E.D. They gave me a bunch of new scripts., but the only one I stayed on is the Omeprazole 20 mg, which I take one every morning on an empty stomach. Now I am able to do the Ibrance without any G.I. issues. So far all my bloodwork is in the normal ranges, so I guess I'm o.k. to continue the Omeprazole.
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JazzyJune,
You give me something to think about. Guess I won't start weaning off until I talk with my onc. I have not experienced many of the digestive problems have bee described by others. Maybe with the constant kidney function checks, it will be ok.
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Awesome news Zimmerwoman!!!!
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Zimmerwoman! Regression! It can't get any better than that!!! Well, maybe NED, but for now regression's right up there! Great news!
Thankfully, I've never been on Nexium or Prilosec of any of those, but what's the issue with getting off them? I know that research focused on older adults, but I figured if we weren't on them for med SEs, we might know someone, like maybe a parent, who is and shouldn't be unless it's absolutely necessary.
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Zimmerwoman-regression-GREAT!!!!!! So happy for you!
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Kaption, Interesting that the woman who wrote this article lives in my town.....Also an interesting article! Hope that guy in Reno is on to something big! AC, welcome. Sorry you have to be here but it's a great place to help. I was DX'd De novo as well. Great news Zimmerwoman!
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Zimmerwoman - regression rocks! Kaption I am thinking of you in that full wig - please show your hairdresser a halo. I slept in mine last night.
and went to work today where several people 'liked' my bangs. If they only knew...0 -
After looking at the halo pictures and videos, I'm just afraid I'm too thin on top. I will check with my stylist and/or wig lady though. Thanks, lalady. (The tiny picture on my avatar is me in my wig-the day I got it
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dlb823, Thanks so much for you tips on Ibrance/letrozole. Are you still taking the Ibrance with letrozole or did you discontinue the letrozole altogether. I am considering asking them to lower the dosage of Ibrance for the next cycle. Are the lower doses proven to be as effective? Can the Ibrance be taken without the letrozole? Have you had nausea/dry heaves and/or a metal taste in your mouth? I have had all of these which makes it difficult for me to want to eat anything. And I know that eating and drinking is important so as not to take meds on an empty stomach, So, what can I do?
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DC, I quit taking Letrozole after that passing out episode and never went back to it. Since my Stage IV dx, I was on Anastrazole for 18 mos., and have been on Faslodex w/Ibrance for about 6 mos.
I don't believe they've studied lower doses, but some women who have had go to a lower dose report continued stability or improvement. My UCLA onc told me it's better to stay on the higher dose if possible. This was in response to a question I posed to her recently that others had wondered about a few pages back -- whether it's better to stay on the higher dose even if you have to wait for wbcs to rebound, or if it's better to cut the dose and not miss days. If nausea turns out to be a continuing issue, maybe an anti-nausea med might be an option. Or you may find the nausea lessening as your body adjusts to the med. And I don't think Ibrance is meant to be taken by itself, but as mentioned above, maybe a different Letrozole -- either a different generic or the name brand -- might work better for you.
The only time I've had a metallic taste in my mouth was last month, after my first Xgeva shot. I had my second dose of Xgeva today, so I'm waiting to see if the same thing happens.
Hope this helps! Hang in there! This med can be a bit tough at first, but it's also turning out to be a wonder drug for a lot of women, so worth sticking with and trying to ease the nausea. Deanna
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Ladies, it's been a couple of crazy! days around here. What if i tell you, I was going back and forth with the neighbor, she has something wrong with the platelets and hemo and it's going really wayward, she goes in and out of ER. And then my auntie. We got Dani with her foot, doc says it is not a clot, but some fluid that is def getting better. Her wbc was low, so even thou she started on 100 this wk, she had to stop for 2 days then she will start again tom. Deanna it's so apropo what you mentioned about stopping or lowering the dose. She is so angry that they keep stopping it, she wants to give it a good bang, let's hope that next wk it will rebounce. Onco takes blood every wk so far.
Zimmerw fantastic to hear of regression. Music to the ears!
Lalady gr8 advice for halo. Dani wears a wig. Sometimes a cap. Crits - you mean creatinine? Why particularly that BT?
Phrogger wow, that's so tough to be dx stage IV right away. Dani was 10 yrs younger than you, she had oophorectomy, it's bearable, it was done laparoscopicaly, of course early hot flashes, some dryness in the private area, she manages, but it gave her opportunities to have tx only given for post menopausal women. And some protection re-estrogen. Good luck with the new tx.
AnimalC sorry for the setback, hope you get better results now.
Kaption I see you are Her2+ also? Is it so? My daughter is Er+Pr+Her2+(after re -biopsy done after a few yrs). Ibrance is not officially recommended for ppl Her2+ so would be important to know if your doc also is doing it off label?
thank you everyone for the info on what could be the problem with the ankles, let's hope it goes away.
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Dear Ladies on Ibrance,
I was dx with bone mets in June. I've been on faslodex and zometa and onc wants to start Ibrance. 75 mg. I'm scared. I don't know what to expect. Will I be sick? Will I lose even more hair. I'm so strung and sad. Advice please!!
Rachel
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Rachel1 - I am on Faslodex/Ibrance & Xgeva. I experienced nausea until I started back on the stomach med. Omeprozole. I also have Fibromyalgia and osteoarthritis, so those are exacerbated by the drugs I'm on, but none of it is so bad that it's not doable with the help of anti-inflammatory meds & some narcotic pain meds. I haven't experienced any hair thinning, but everyone is a little different. I had to be put on the 75 mg dose because my wbc's went too low on the higher doses. They're still low, but above a 1,000. I get to start my 4th round on Friday. I hope this is helpful for you.
You can do this!
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Momall, I was HER2+ but am now HER2- I've always been ER+
The change in HER2 status is weird, but it happens. I was barely + when diagnosed with the mets. There's even a word for us borderline people. I was on Herceptin and Perjetta about six months.It failed. I was tested for a clinical trial and found to be HER2- That led me to Ibrance
Rachel1, I know it's scary but Ibrance is a doable treatment that has helped many of us. Fatigue is the main se, but many of us seem to improve over time. Best wishes.
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I had my pet scan Tuesday with good results. I have been on ibrance since August. My breast tumor considered stable, all spine tumors decreased in size except for t12and l2 which are completely gone. I did have 10 radiation treatments to lower back. A little hair loss and some nausea are acceptable for these results. Marilyn
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Kaption, interesting about your Her2 changing. I'm just curious, was your Her2 factor checked by FISH the first time around? MomATT, here's an article on the importance of that -- although it's safer to be thought Her2+ and treated as such (as Dani is), than have that missed and be thought to be Her2-. http://www.medscape.com/viewarticle/746628_11 But Kaption your experience is something for all of us to be aware of -- that stats can and do sometimes change.
Rachel, I know we've "talked" on the bone mets thread and PM'd about your fears. I wish I could help you more. After a few early SEs that never stayed around very long, I have honestly found Ibrance to be a very tolerable drug and nothing to fear. Of course, we're all different, and I was also dreading it when I was originally handed a list of SEs prior to starting it. But thankfully, the few that have happened have been fleeting, and I will be very grateful if I can stay on it for many more months.
I have a CT & bone scan tomorrow afternoon. Any and all calming thoughts much appreciated!!! I'm actually glad to be getting it done to see where we are with Ibrance+Faslodex+Xgeva, but definitely can feel the scanxiety kicking in a bit today. Deanna
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Marilyn, Very happy to hear your good results! Time for a little celebration, woo hoo!
Deana, I feel confident we will be congratulating you too in the near future. Sending thoughts of peace and comfort for now.
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Zimmer and Marilyn -Congrats on the good scans! woohoo!
Rachel -We are all different when it comes to our meds, but I can tell you that on 75 mg Ibrance I am having few side effects. My blood counts do drop down and my hair has thinned some. But I attribute my hair to the drop in estrogen caused by the letrozole I'm on. I'm functioning absolutely normally since being on the drug. my dose was dropped from 125 to 100 and then to 75. It's possible that you may have no issues. Wishing you well!
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Marilyn, that is wonderful! So good to hear!
Deanna, I know you will get good results.
My HER2 numbers were checked by FISH. I've had 4 biopsies checked. The first-left breast, in 2005 (stage zero); second, right breast, in 2012 (stage 0); and MBC diagnosis (spine biopsy) in 2013 were all barely over 2 and slowly decreasing. After H & P failed they did a biopsy on my left hip and it was below 2. Our original decision to treat as HER2+ (with input from 3 oncs) was just as you said, Deanna, to treat as if it were more aggressive. Bottom line is, cancer is tricky and can change over time. That's my weird experience"
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Can anyone tell me, is Her status checked by a liver biop or just a blood test? I was initially dx as Her- but always wonder if mine will change or if they even think to check? I will have to ask my Onc. Rachel1, I was on Ibrance for 3 rounds and yes the only real SE was the extreme fatigue/low blood counts. Had a few other very minor SE's such as small amount of blood in the nasal passages and a sore jaw for a few weeks. Other than that it was pretty OK. I had to quit because it was suspected to elevate my liver enzymes.
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Don't post much but read every day. Just wanted to let you know that my ct scan today was stable! On cycle 11. Cancer still in homes but nowhere else
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