Ibrance (Palbociclib)
Comments
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Pat, just stopping by to see how you dancers are doing? So glad you got to see your granddaughter become a sophomore . She is blessed to have you as a grandmother. Sending prayers for your daughter too.
Jaycee I just started some Xanax at night. I’ve had and infection and I am on antibiotics. Starting Taxotere in 4 weeks after this last progression. I thought I could calm the anxiety but 3 nights of no sleep etc I asked for something. Valium or Ativan will be down the road with steroids. I figure so what if I become dependent.
I still think of you all and wishing you enjoy the August sunshine.
Maire
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I wanted to offer an idea for people newly starting Ibrance. This is not meant as a criticism in any way but rather something I’ve been thinking about.
For me, I notice things more when I have them on my mind. Some might say that I’m paying more attention. This can apply to anything.
What if by bracing ourselves for the SE of Ibrance in advance, we are actually pre-ordaining that we’ll have those SE rather than just seeing how we feel on them. My nature is one by which I want to be prepared for everything but I’ve noticed this for myself and thought I’d ask here. On the flip side, I do always feel quite reassured when I’m feeling something that I know others have too. Maybe there’s a middle ground. Or maybe I’m a nut lol0 -
My biggest concern about side effects is because we are so short staffed at work. I work full time weekdays and am on call 10 of the next 12 days from 5 pm to 8 am. I would need someone to cover if side effects were intense. That being said, I worked full time through chemo and rads but no call and I generally tolerate meds well. This is all just so new. I really appreciate everyone's responses. It helps ease my mind.
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jen, with all due respect, I completely disagree with the idea that “What if by bracing ourselves for the SE of Ibrance in advance, we are actually pre-ordaining that we'll have those SE rather than just seeing how we feel on them.“ For one thing, women’s concerns are far too often trivialized when reporting symptoms, not just of drug reactions and cancer but many other illnesses, too. Maybe I'm having that se because I read about it? Uh, no. Time for that to stop.
Diagnosed with mbc in early 2011, I'm proud to say I've developed some perseverance dealing with this disease. But, the se's of Aromasin/Ibrance which I began in March this year are kicking my butt more than I want them to. And it's not because I'm bringing them on by thinking about them. Ibrance is a powerful medicine and affects our blood and that is going to create se's. The aromatase inhibitors, too, are powerful medicines that come with their own side effects—hello, no estrogen for years and years.While I do my best to live as normal a life as possible, I'm not going to minimize the se's I have.
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Div.Mrs.M Of course, By thinking something is going to happen, you can have a self-fulfilling act. It's the whole principal of the Placebo effect. Your body believes what your brain tells it. Believe me,, I have OCD and have been living this scenario all my life
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Jen and Divine- I can see both sides of the SE issue that you brought up. But I tend to agree with Divine about this. Ibrance IS a powerful drug. It is a form of chemo from what I read. It is affecting our blood counts, and doing things in our body that I cannot fully understand or explain ( Cure-ious can explain it ). And stopping estrogen production through the AI meds is unnatural and we see true side effects from our bodies lack of estrogen. We do have cancer and we are on powerful meds to stop the cancer. We are not reading about the side effects and then through power of suggestion developing those side effects. They are real. This is real.
Dutchiris--- I understand your concerns. I used to work 3 - 12 hour shifts a week in a very demanding career--physically and mentally demanding. I did not have to take call. I am now "medically retiring" due to fatigue and body aches. I could not keep up the pace. In my opinion, that is where you may have the most trouble, is the fatigue to keep up with your schedule. It is not like IV chemo with the nausea/vomiting, but you will not feel like your old self. Just wait and see how it does for you. Many continue to work while on Ibrance. Each person, each situation is different.
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I fall maybe halfway between Jen and Divine, leaning toward Divine. Because I do think knowing about side effects can cause them (there is research on that, maybe doctor self-serving research) but that idea gives doctors justification for brushing aside our SE when we report them. They don't need any help. They do it naturally without any help. My former MO always thought that I caused my own SE's, not by knowing about them, but just because I was an anxious mess (in his opinion). I was hurt and angry about that. If a SE is caused by previous knowledge or it is an actual symptom (and we'll never know which is which), it feels the same. Psychosomatic pain is still pain. It hurts just like any other pain. You shouldn't brush it off yourself and your doctor certainly shouldn't.
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Just to add my two cents worth on the SE issue: When I first started IL in May 2016, I was so naive. I had not yet found this site and had no other communication other than my onc and the printed brochure which I knew listed everything even though I would not experience it all. I always naively thought companies listed everything to cover themselves so I paid little attention to some of it, and grabbed on to other parts. It was so new back then... My experience with the SEs were minimal and no more than most of you mention. Now I am grateful for all of the information you all provide me which is more complete and honest than what I originally knew, but it has not changed my SEs. Everyone is different. Some of us are more anxious and some are more laid back, and some bodies are more tolerant of medicine. I believe this affects our SEs. Yes Jens..., I also believe we notice things more when we think about them, like seeing how everyone is pregnant when we are, or has thin hair like us, etc. This phenomena is real and proven, but so is our cancer. My advice to newbies is to be honest with yourself and your oncologist, and grab hold of a good friend or family member who knows you. For me, my faith is also important to help me smile and get through each day. Whatever helps you just know you can get through this. Some days I have to force myself to get out of the house but I am always glad when I do. Other days I am thankful for a recliner and a good book or my crochet yarn. I love that we have this media to communicate with others. I don't know what my life would look like if I had to go it alone like in the beginning. I have learned to be thankful for the little things.
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dutchiris, you do not mention what dosage of Ibrance you will taking. SE's can be quite debilitating on the 125 dosage, less so on 100 and some of us are doing ok on 75, but every one is different and has different symptoms. If you got through IV chemo and still worked you must have a strong constitution, perhaps you can prepare your work associates by telling them that you may become tired after 2 weeks of taking Ibrance, but you won't really know how it will affect you until you have completed a couple of cycles of the medication. Please drink as much water/liquid you can manage everyday and take the Ibrance with a meal of at least 400 calories to help your body cope. Wishing you well on this treatment.
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interesting discussion!
Jens I totally get what you are gently encouraging. For newbies to not get too anxious about the “what if’s” of starting Ibrance and just see how it goes and what pops up, side effect wise. Just like any medication or supplement, some may tolerate it and some may not. There’s definitely a wide bridge of folks who barely have any side effects to those who simply cannot even take the meds due to terrible reactions and side effects.
I was OVERLY informed when I started I/L and incredibly anxious. I needed to know that people could function normally and live their lives while on this medication. My biggest fear was vomiting (I am a vomit-phobe!) I can handle diarrhea but not the other direction. So that was honestly my biggest worry. Thankfully there’s drugs for that!
The biggest lesson for me at the time of starting the meds was to inform my MO of any side effect I was having so we could address it and lessen it. He was ready and willing to give me whatever meds I needed say I could take the Ibrance without vomiting. Thankfully I have never vomited and didn’t need the anti-emetics for very long. I get nauseous occasionally and will take one like maybe once every two months.
I had a similar experience to IntoLight where I didn’t know this board and community existed so I floundered on my own for the first year or so. It wasn’t until I went to the LBBC MBC conference and met a bunch of women who looked “normal” (I know I know, the words we hate to hear!) that actually helped me realize that I could live and function pretty normally with this disease and medication.
It also took me finding my wings again and going to foreign countries on trips and other states and being fine doing so that helped me realize I am ok!0 -
My wife finished her second cycle of Ibrance on Tuesday, and we met with her MO today. It seems as though the 100mg is treating her a little bit better as her ANC level was 1190 (1.19) today versus 320 (0.32) on her first cycle of 125mg (her other blood counts were generally better also). They'll do additional blood work next week to confirm everything is still A-OK before starting Cycle #3.
Relative to SE's, she's been relatively SE-free (knock on wood): a little insomnia the first week of her Ibrance cycle and some fatigue but that's all certainly manageable (so far). Even the fatigue was somewhat reduced on the lower dose.
We've also scheduled her first scan for next month. We had assumed it would only be the lungs (to see relatively size of the tumors there), but they want to do full body. This was surprising and a little disconcerting because her full-body scans in May were negative outside the lungs so they're obviously concerned the cancer may have spread in the meantime. Better safe than sorry, I suppose, but still nerve-racking. I feel like we're playing Russian-roulette with the scans every three months. I hate this! Better figure out a way to accept this "new normal". (I still hate it though!).
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Ref: SE's... I will say that I was probably the most scared of the side effects I heard about with Xgeva..the condition you can get with the jaw. I may have even thought It was happening because I did have some jaw pain after the shot a few days or weeks (I can't remember now when exactly after the shot it was) but I did even post a thread about it..saying my jaw was hurting and could it be from that. I realized once the pain didn't come back again, it wasn't that...and I was just being overly paranoid. I think we all can get like that and it's understandable because these meds can/do have lots of SE's. I will say though...every SE I experienced on Ibrance...I came here to ask about it and low and behold other have had the same ones I had and that did put my mind at ease.
Off topic: I wish i could remember who it was on here that said their ANC is always on the low side and that it's ok for them? Was it Pat? Anyway mine at day 5 off of Ibrance was at 1000 my doctor says that is fine and we are not lowering from the 100mg.?? I am wondering if I am just going to be low at 1000 and thats just gonna be my new norm?
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My ANC hovers around 1.1 and is my new normal. My MO watches my platelets, too. They tend to run in the 70s.
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To me the side effects of ibrance accumulate over time. ANC on my first cycle was 600, but i felt normal. Now after 6th cycle, even at 75mg, my ANC is still low at 1400. However, i feel so tired, much more than when ANC was 600
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That was me, Nicole. I don't know anyone on this thread whose ANC hovers around 3-4. Mine and most others hover around 1-1.5. So that's the new normal. We don't tend to get infections because of it, though. When your doctor said 1000 (1) was fine, she meant fine to start next bottle of Ibrance.
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Denny10,
I will start at 125. I am also in the PROMISE Trial. Most of my questions about side effects are about preparing myself and colleagues for how this will impact my ability to do my job without talking about all the time. They are very undertanding.
I am grateful to have you all to help me.
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Have not heard from Gumdoctor & Shetland. I hope they are doing ok!!
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Jay - yes I meant to write that she meant it was fine as far as continuing on with the next bottle. Hopefully I wont be at any greater risk for infections at that number
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I should also mention I am about to get Zometa soon since I had an allergic reaction to the Xgeva massive bad hives even with the claritian. My doctor said she will not risk giving me Xgeva again because each time you have an allergic reaction it can get worse...anyway i have to admit, that I have been worried that I may get the flu symptoms that I have heard everyone that got this medication tends to get....but on the bright side they said the symptoms only lasted a day
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Nicole, my "flu-like" symptoms on Zometa are mild--just a little body ache and slight nausea. Here's hoping that is the worst for you. I still do everything else fine the next day even with the symptoms. Chris
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I can say that I get zometa iv's four times a year for many years now and never have any se's! They can set the iv to drip as fast as 15 minutes, but I ask for a 30 minute drip because I tolerate it better that way. I drink a lot of water before and after. I never get flu like symptoms or body aches. Most often I meet my son for lunch afterwards because he lives not too far from the cancer center. Then I drive an hour through Pittsburgh traffic (ugh) home.
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In the past several years, I've really woken up to how often women's concerns in many areas, not just our health, are minimized. Women are not always HEARD. I feel very strongly about this.I feel the need to advocate for us because a lot of women are conditioned to take a back seat, not make waves, ect.
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Speaking of blood work, here's some of my most recent. I am not sure what the ANC is.
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Nicole, I just did my second Zometa infusion last week (I get it ever 12 weeks) and it went fine. I took Claritin the day before, the day of and the day after. On the next day after that when I did not take Claritin I did get some minor nausea/indigestion but I did not get the fever and body aches. So I don't know how much the Claritin helped and I don't know if the nausea was from the Zometa three days after the infusion. The first Zometa infusion back in May I had nausea, fever, chills and body aches that began 24 hours after the infusion and lasted for about a day.
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Divine ANC is the neutrophils. Looks like you are .9?
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Greetings from Northern VA. I just recently joined and have been reading all of the incredible advice and support provided on this forum. It is truly a blessing.
I have bone METS (ribs, spine, and arm) and for those that are taking iBrance and Letrozole (Ferama), hang in there. Someone in the group wisely stated that you are beginning the 'iBrance dance'. That is so true. Each month can offer different challenges as your body begins to test and adjust to the drugs. I'm in the middle of cycle #72, 125mg iBrance, and Letrozole (Femara) 2.5mg, and still have different side effects each month.
This is my third time to the 'cancer party'. First diagnosis was in 2001. Had a lumpectomy, sentinel, had a port put in and AC. I had a new diagnosis and bi-lateral in 2009, with a metastatic recurrence in 2013. The surgery in 2013 left me with a lot of nerve pain. I started taking Lyrica for the pain and found it also helped with the bone pain.
I was part of a very small iBrance clinical trial for over four years (started the beginning of 2014). I had to drop the trial because my husband became very ill and I wasn't able to meet the strict timelines, but I am still being followed by the study group.
I thought it might be helpful to share the side effects that I have experienced:
- In the beginning the side effects were rough
- Fatigue; continue to struggle
- Hair thinning - I also experience a burning sensation on my scalp. In the beginning my hair loss started at my hairline and would slowly work across my scalp. I soon discovered my hair would thin in the areas of the burning. Ice packs or an ice cap help with the burning and suppress the hair thinning.
- Finger tips peel; thumb and first finger primarily. About year three that condition slowed and has now moved to my feet. This has impacted my use of touch screen devices (iPhone, iPad, etc.)
- Weak nails and they would lift off the nail bed; eased up around year 3.5
- Dry eyes early on in treatment, but ended
- Blood in my nose; not a bloody nose - that ended around year 3
- Nauseous feeling - really bad in the beginning (sniff peppermint oil, eat ginger, or take Zofran) still have periods
- Stabbing pain in the thigh or next to my shin; in the beginning it was constant, now it is occasional
- Bone and CT scans every three months; I found the scans take more out of me the more I have. I feel like I've been hit by a truck for a day or so after the scan. I also have to do the scans on different days. My first scans were both done on the same day and I developed a severe headache as a result.
- Denousumb (Prolia) injections every month for 24 months; every three months subsequently
- I have trouble sleeping. I take melatonin or occasionally Ambien
- Joint discomfort/pain is constant, especially if I have been sitting or when I first wake up. If I stretch before getting up it helps with moving around. Once I've been up for a few minutes, I'm alright.
- Tender gums, sores in the mouth, on the tongue and gums (Geographic mouth); this is constant now; my dermatologist, in connection with MO, has prescribed Retin-A for the sores….oddly it works
- Appetite constantly changing. Things I may have loved once, I can't tolerate now. I may find a new food/meal that is appealing and after a few months I can't eat it anymore.
When I stopped the trial, I was switched from Femara to generic brands of Letrozole. I developed crusty rashes, almost like shingles. After many biopsies/scrapings there wasn't any resolution. I stopped iBrance and nothing changed, so I stopped everything and the rashes cleared up. It turned out the generic brands of Letrozole (I was given at least two different brands) were the cause. Once I was on Femara again, no issues. The generic brands had food dyes in them that I reacted to.
My first approach in handling any side effects, is to take a natural approach.
My bone scans have started coming back with references to broken ribs. My doctor explained that this was a good sign. As the bone heals, it begins to appear as if the bone has been previously broken or bruised.
I hope this will help anyone just starting treatment.
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Hey ladies I take 100mg
I thought ibrance was fabulous even with all the se’s I read about bc I was comparing it to my 2003 tx of red devil taxol taxotere and radiation. No comparison. I mainly have fatigue and nausea and after over 2 years the se’s Vary month to month.
I hope you newbies get everything you need here.
Also when I first started a nurse from phizer called me once a month I think for the first 6 months. That was helpful bc I wrote down my se’s and at the end of the day they didn’t seem So bad.
Tanya
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Lucky4 that's really helpful! Thank you.
dutchiris - the SEs seem to come and go according to what folk report here and my own experience. Some months are bad and others fine. My nurse practitioner is quite certain they are not cumulative. E.g. I have had issues with feet mild neuropathy this month, but never before after a year on I/L. Also some months I am way more fatigued than others. I too have had the nose blood but not quite bleeding every day for a couple of months, now gone I think it's also about lifestyle, relaxation and basically whatever other crap is going on in your life apart from this!
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Lucky4life,
Welcome to the thread! Congrats on doing the ibrance dance for so long. That gives me hope that I\L can work for a very long time.
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LuckyforLife:
THANK YOU!!!
I especially liked the fact you are 72 cycles on Ibrance 125 and you figured out a specific side effect was related to generic letrozole.
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Wow, Lucky4life, that's a lot of side effects. I would have lowered the dose at about number 5. And only a real Apple person would spell iBrance like that.
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i thought I would run this by the group to see if anyone has any insights. I have been on I/L for over 4 years and have been doing well on 75 mg. Of Ibrance. On three occasions now I have had a very weird side affect. I am totally fine, in fact yesterday I was about to leave for work, and all of a sudden i start shivering. Because this is the 3rd time this has happened, I know what to expect. I took my temp and it was 100, within a half hour it was up to 102. I contacted the clinic and headed in, I had the standard septic work up- but nothing ever shows. My white count was elevated (for me) and my neutrophils are up to 91% so something is up but all cultures, xrays ets are negative. I get a liter of fluid , sleep a lot and ave a couple days of what I call Mack Truck Syndrome. I feel l like I’ve been hit by a Mack Truck- body aches, fatigue, weakness etc. . It has happpend at least three times, once I was on a walk with a friend and about 100 feet from her house, it came over me all of a sudden and wasnt sure I would make it to her house. On another occasion , I was decorating for my granddaughters 5 th birthday and the chill came over me in about 2 minutes. off to the ER I went. Any ideas????
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