Ibrance (Palbociclib)
Comments
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Thanks, Stephanie!
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I do not post here a lot, but read everyday and keep up with how everyone is doing. I feel like I know you guys. Last PET I was hesitant about posting good results because It felt awkward. One of you kind ladies told me to never feel that way because good scan results give hope to all. Well I have uplifting news to report tonight.
I had my 2nd PET/CT since starting the Faslodex/Ibrance combination. All lung mets (and I had numerous) are gone and a couple of nodules still showing up on PET have NO SUV uptake. The only active cancer I have is 1 little bone met in my right iliac bone. For some reason it has slightly increased activity, but that was the only negative on my report. I am just on cloud nine!!! When I was diagnosed stage IV, I had a tumor in my neck (which was surgically removed) 2 tumors in my chest (proton therapy took care of them) and numerous mets in both lungs. The oncologist who diagnosed me told me I had 2 years to live. And here it is 1 year and 9 months later and I am doing great!! This is a good drug combo and I hope all of us get great results and stay on it a very long long time!
Strange thing happened today with my Faslodex shots. A nurse I have never seen before did my injections. When she was giving me the first shot, I started having chest pain and a burning sensation in my chest. I got a strange taste in my mouth and smelled a strong medicine smell. I told the nurse something was not right and she went to get my oncologist. She said that she nicked a sub cutaneous blood vein and some of the drug got into my bloodstream. They hooked me up to a bag of fluids to dilute the drug that was in the blood. The pain is now gone butI still have the burning sensation in my chest and a dry cough. The nurse told me this happened one other time to another patient. Now I will be freaking out before all future injections.
My oncologist told me they are doing a trial at Sarah Cannon (Nashville) with the new CDK4/6 and are having great results. She said it does not lower the blood counts and you take it everyday. She said it should be coming out in the near future! So we all have that in our back pocket for later.
It's been a long day for me... from PET at 7am to sitting in a chemo chair getting fluids. I did not get out of my MO"s office until 5pm.
Hope everyone has a great weekend!
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Robin, so glad you're okay! I've never heard of nicking a vein during Faslodex injections. What if they hadn"t realized that and given you the IV fluids? I wonder if all oncs are even aware that can happen?!
And woohoo on your scan results!!! So happy for you! I hope you do something special to celebrate.
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Robin, very scary! Good for you for recognizing something was not right and speaking up! I would ask for a "regular" nurse you are familiar with next time. GREAT scan results! I am also doing very well on Ibrance, to me it is a miracle drug! Hope we can all stay on it for a LONG time!
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Robin - Glad to hear your great scan news!
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Robin! I have chills!!! I am thrilled for you. I love the good news. I love the good scans. WE SHOULD love them. It gives us hope of what COULD be and if we focus on the POSITIVE possibilities then it will work for us. It's attitude. It's visualizing. It's believing it will happen. Good for you, Robin. So thrilled for you. And such a quick response too. HOORAY! Celebrate!
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Deanna, apparently the oncologists are aware of hitting a blood vein. The nurse explained that when they inject the needle into the muscle they pull back on the syringe and if blood is present they are supposed to remove it. The nurse told my oncologist that when she pulled back on the syringe a little bit of blood was there, but when she was done there was blood in the syringe. She knew exactly what was happening when I complained about the pain. I guess it doesn't happen often but it does happen.
Lynnwood, I will definitely make sure that nurse never comes near me. When she was sticking me for the IV fluids, it took her 3 times to find a good vein. My arm is very bruised today in 2 places. I am glad to hear you are having good results with this drug and I pray we all stay on it for a long time.
eelder, I am with you on attitude, visualizing, and believing!! When I was getting proton therapy to my chest, I would visualize the proton beams blowing up the cancer.
I will be celebrating my results in Vegas in 3 weeks!!
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Ladies - Checking in from my vacation to tune into the positive supportive vibe on this thread.
Just finished week 2 of cycle 7. Long days mountain biking with my daughter and nephews and I am doing better than usual. Minimal side effects. Sleeping deeply like I used to. Hiking along whistler peak with the family tomorrow. Great vacation.
Cure-ius - I really appreciate your posts. I plan to go back through your them when I get back from vacation.
rpoole - We are interested in all the facts here - the good and the bad. That said I am so happy your results were good. thank you for sharing that information about the trial for the other CDK 4/6 inhibitor. I know the ribociclib recently met the FDA standard for a meaningful clinical effect so the stopped and initiated the FDA approval process. There are others in the pipeline but less far along.
>Z<
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hi all!
Cross posting here from the bone mets thread, wondering if any of you have any thoughts about this? I'm having some lightheadedness & shakiness in the afternoon. I'm on Ibrance but have been off it for 3 weeks now, just on Femera but my WBC have been low. Could this be causing it? I feel like it's low blood sugar but not particularly hungry when it happens. I get my labs done again tomorrow & have an appt with MO on Tuesday, so I will ask then but in the meantime?? cheers, dee
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Dee, what are your red cell and platelet counts? Hopefully you will have new CBC. I never have had those symptoms that you are describing. Also, did you have a fasting glucose taken?
Hugs Carol
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Hi Carol,
Haven't been able to get my labs, don't know if it's because I'm on a trial, but my PCP's ass't has requested those now, so I will find out on Tuesday (what a PIA not having access to labs has been) I do usually feel better after a bite to eat but it happens every day. I have only noticed this in the last month since I've been taking Femera, so I wondered if low blood sugar was a SE. Yesterday the shakiness & light headedness was so bad that I could hardly sign my name. I will definitely mention to trial nurse & MO on Tuesday. thx, dee
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Dee, I have been having lightededness since June. It gets so bad at times, I feel as though I am going to pass out. I told my MO and she ordered a brain scan just to be safe and it was clear. She really did not have much explanation to offer me other than It is a side effect from Ibrance. I stay slightly anemic on the Ibrance, but she told me not to take iron. I asked her again this week if I could take a low dose iron supplement and she said just get pre-natal vitamins. It really is a scary feeling to feel this way all the time and it happens daily. I would be interested to see if your MO gives you a better explanation.
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thx rpoole, I had a brain MRI in May & it showed nothing, actually it showed that what they were calling a skull met wasn't so that was good news. I will post what MO says. cheers, dee
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I'm no longer on Ibrance/let. (Faslodex & xgeva only now). But, since starting Ibrance I have had low sodium numbers and I can get very faint feeling. I do drink a lot of water. I do not get the shakiness though. Just might check your sodium.
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Dee - I have lightheadedness and shakiness routinely since starting my protocol which includes Ibrance, letrozol and other stuff. I sometimes suspect the metformin which is supposed to lower my blood sugar; however it seems to be a common side effect of ibrance. My measured blood sugar levels and WBC have been pretty normal throughout treatment. I feel like having something lemony or gingery and slightly sweet. It usually gets me back on my feet after a short rest.
A lightly sweetened Ginger beer or watered down lemonaid on ice or tea with lemon and a little honey works for me. I can imagine other herbal drinks might help. Maybe something minty. In any case it's been frequent for me, so it might as well be an excuse for some TLC that I enjoy.
>Z<
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Thx >Z< I rarely ever have anything sweet but maybe I have to keep something with me to keep me from passing out. Anyway, I will ask my MO on Tuesday & post what she says in case it helps anyone else. It's a pretty weird sensation. cheers, dee
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Hi everyone!
I've just started on Ibrance and Femara. I'm on my 4th year with metastatic breast cancer, and was previously on Xeloda for 2 years and Faslodex for almost 2 years. What kind of side effects have all of you been experiencing?
Thanks for any help you can give.
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Hi Lynne, I am in the midst of the approval process for Ibrance and hope to start the first cycle within the next week. I just started Faslodex rather than Femara, so unfortunately, I cannot give you any info about SEs. I just couldn't resist saying hello since we share the same first name and spelling and live just one town away from one another. I am just down the road from Manchester, in Bedford. I am sorry that we also share the same diagnosis. I am sure others will provide you with the information you want. I hope that Ibrance and Femara prove to be the treatment that works for you for many years to come
Lynne
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Hi, Lynne from Manchester, and welcome to this Ibrance thread. I'd say the most common side effect is fatigue.
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I just started on the Femara and Ibrance combo. Today is day 9 of adding in the Ibrance. During the first week, I was extremely fatigued. I rested really well over the weekend and feel better today. I also added a b-12 supplement. Either the b-12 is helping, or I'm getting used to the Ibrance. I get the first blood test for my counts on Friday.
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Femera gave me very achy joints, the Ibrance at 125 mg gave me extreme fatigue and a pounding heart and elevated liver enzymes which were the worst SE's. Other easier ones were teary eyes and mild mouth sores for a short time. I am now on 75 mg with none of these symptoms. I am on Arimidex rather than Femera.
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So how long have you been on 75 mg, Artist? And are your liver enzymes normal?
Welcome, talpha1.
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artist. How out of whack did your enzymes get? Mine were elevated last month. MO wanted to know if I drank a lot on vacation. Nope. He's not worried (yet) but I'm concerned. How long have you been on 75? Results normal? Any dietary changes?
Thanks
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Thought I may ask here in this forum..have a question if anyone has experience side effect of memory loss with palbociclib..
Long story short mom is Stage IV TNBC with met to lung, bone and brain...on clinical trial with Anti androgen receptor and Palbociclib...
Since starting the trial....appears she's having memory problems...more short term memory recollection than anything, like naming things...
Otherwise she is eating well, going to her senior center, taking the train/bus...but the memory has me a bit concerned...
MO said its probably related to the radiation/ traumatic brain injury she had earlier in the year January ( She has hx of 2 brain mets diagnosed last year in September initially they just did SRS to both, but recurrence of larger met caused problems----led to right sided paralysis/significant edema and swelling of the brain/my mom even lost her speech, had craniotomy of larger met and went to rehab) was a very difficult time....But she has slowly recovered since March doing ok...I never thought she would make it out of the hospital walking....
Anyone have an idea of what can be causing this memory loss,,,what can help?..could this be chemo related...or cancer related?:/
Would appreciate to hear your experience...
Thank you!!!!
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Nanita, I think the onc is right and what you are seeing is the long term effects of the trauma her brain has been through. It seems like your Mom has made GREAT progress in her recovery. It may just take quite some time to see to what extent her brain can recover from all she has been through. I don't know how old your Mom is, my Mom is 78 and her short term memory is terrible, I think just a part of aging.
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Nanita_daughter, I agree with Lynnwood -- cumulative, probably exacerbated by her brain surgery. But I'm also thinking just the stress of her diagnosis and treatment have surely taken a toll. So if you haven't already, maybe actively work on ways to help her de-stress, whether that's an occasional light massage, or talking to a really good oncology social worker (many larger facilities provide them free of charge as part of a patient's ongoing care), or just watching some comedies together -- anything you can do to help her de-stress.
Now, that said, my non-medical degreed opinion is that palbo probably can have some impact on brain function, and I think it's probably more noticeable in older patients. I occasionally have trouble thinking of names, for example, that will then pop into my head 10 minutes later without effort. I've chalked it off to chemo-brain since I had chemo in 2008, but it does seem a tad bit worse since I've been on palbo. But I'm also several years older, etc... So probably also a confluence of factors.
As Lynnwood said, it sounds like you're Mom is doing great! I hope you'll stick around and keep us up-to-date on her future progress! Deanna
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Shetland and Zills, I am almost at the end of the 1st cycle on the 75 mg. I get a blood draw tomorrow. ( I hope a couple of glasses of wine on Saturday do not skew the numbers.........
) My liver enzymes on the 125 mg were in the 700's, then on 100 mg were in the 500's. I'm hoping they are pretty normal this round and that it is working. SSStttttrrrrreeessss!0 -
Thank you for the reply!<3 I know she has made progress overall. But just got worried again...
We got a referral from her MO to see a cognitive specialist/psychiastrist I believe! I also told her to keep herself busy, keep going to her center and keep doing her daily activities...
Write down list, just try to work around this memory fog.....
Depression is also an issue I am sure..She is on anti depressant and of course she also worries about the cancer...
Thee memory loss has made her more frustrated and upset, but like you said hoping she gets better with coping with it...
Thank you again!
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Hi, everyone. I'm catching up on this thread (currently on page 130 of the 172 pages). I just got my bottle of Ibrance and had my first Faslodex shot yesterday. I'm trying to decide if I should take this now, with my main meal (lunch) or start tomorrow. I don't want to start taking it at dinnertime because I usually don't eat very much in the evenings (toast or a fruit smoothie, usually - possibly not enough to coat the stomach and prevent nausea).
Did anyone experience immediate, or same-day effects from their first dose of Ibrance?
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I did not experience first day anything but after about 4 days I got a weird mild sinus like headache and excruciating tooth/jaw pain of all things. It was at the site of a filling I had had done like a month before which was super weird. This was on the 125 mg. My dentist gave me a pain med but it went away on it's own after two days. The headaches subsided after about 1 1/2 weeks. I also got some mild mouth sores but a soft toothbrush and rinse helped and this went away too. All in all the worst was after about 3 weeks I began to get the major fatigue......I am now on 75 mg and feel fine.
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