Ibrance (Palbociclib)
Comments
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Diana, I'm from Pennsylvania and we have a local Amish farmers market. We go there just about every week. All of their food is amazing! Love the bakery store!
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Has anyone heard about vertigo/dizzy spells as a SE of Ibrance? I've been having these about every 2 weeks for the past 3 months. I've had a brain MRI about 2 months ago that was negative for mets. Yesterday it happened while I was driving. Scary. I was in a left turn lane stopped when it hit me. All the streets and cars started whirling in circles, my head wasn't spinning everything around me was spinning. I finally got my hazard lights on and the people stopped honking at me as much. I sat there at least five minutes until it finally stopped. Then I had to drive 30 minutes home.
I'm going to see my PCP today.
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Dianarose- you go girl! Enjoy your trip! Sounds just right!
I am seeing many newbies here. Welcome aboard; this is a wonderful group. Want to offer reassurance
to all of you; most of what I am reading are "normal" Ibrance issues. Generally, things will improve with time. Hang in there!
Love to all of my MBC sisters, MJH
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Dianarose~ you must be heading off to Lancaster perhaps ? I am from PA. Very lovely area. Have a blast! But bring an umbrella. For Saturday my dear. Supposed to rain on and off all weekend. Yuck. Happy Mother's Day to everyone and I mean the puppies mamas and the kitty cat mamas too! 💜Color of hope. ~M ~
Lita ~so special and such happiness I see in your smile, such pride. She did it! You did it!! God bless you both seeetheart, you look very nice and love the picture with your DD & DH! Hugs hugs! m~
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Grannax, only one minor dizzy spell way back. OMG, you must have felt so scared. I am so relieved that you are alright and heading to your PCP.
My father and his sisters are prone to episodes of vertigo caused by inner ear imbalance. Some viruses can also cause it.
Holding you in the light, feeling concerned.
Best, MJH
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Grannax2, Ibrance does increase your risk for stroke, and it is possible to have the kind of stroke that lasts only for a few minutes, ish something. Glad that you are going to your PCP.
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Lindalou, hopefully the fatigue will lessen as you go forward. I am on 11th cycle and,for me, fatigue levels vary. My mental status, along with joint stiffness affect my energy levels. Let's face it, vacuuming your house for the 165,000th time is not as tempting as lunch out with girlfriends! I do feel better if I try and move about some, even if it's a five minute walk in the driveway. Somedays, I do feel like I'm slogging through jello.
Neupogen/neulasta folks- I guessing that my MO, and others, do not think about using these rescue drugs with Ibrance as often, because the majority of patients rebound on their own. There are always exceptions, of course. The low ANC's seem to be more dramatic at first, then level off. It just depends on your body's response. Most of us have not experienced serious infection due to low ANC's. More commonly, colds and "flu" may linger or be felt more acutely.
Best, MJH
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LillyMillie, I'm with you on counts. Just finished cycle one and have dropped to .8 so a longer break for me too.
Have a good trip Diana. There is an Amish bakery not far from here that has the most amazing breads and pastries and pies.
Good weekend to everyone.
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We are heading to Lancaster. I do go to the farmers market. Love all the food! I bought some home canned cherry pie filling last time and I could have just ate it right out of the jar. We are seeing Jonah at Sight and Sound. Will be our third time. Moses was awesome!
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Great to hear such encouraging news of the Ibrance/letrazole regime it's giving me lots of hope. My ANC was 1.5 after 9 days and having labs again on Monday. Overall feeling pretty good just trying to motivate myself to exercise! Hope everyone has a wonderful Mother's Day weekend.
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pedsnurse - inviting you to join us on the stage V fitness thread ... I am a bit burnt out so sleep and stress management and everything but exercise has been the topic of the month. however, we all did a great job exercising for the first four months of the year and we'll get back in gear June.
Grannax - so glad you are safe. I have not had that side effect. It could be Ibrance but it also could be something else ... not everything is the drug or even cancer.
>Z<
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Pink, finally, someone who feels like I do! My side effects with Ibrance and Femara have be mild compared to heavier chemo I see with others. I have taken both together for 11 months, with dinner, and rarely have additional problems. I do have increased fatigue but I can usually push through it although I have stopped working and have now retired. My hair has thinned so much that I wear a wig to special outings. It did not get bad until about 9 months of treatment. I am avidly reading tips from others to hear if there is any hope to salvaging what little hair I have left! The good news is that the drugs are working for me and most of my mets have resolved, although my adenocarcinoma is still active.
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thinkpositive, I am new to this site, and I haven't read every post, but you do lose hair on Ibrance. Mine wasn't really noticeable until about 6 months in, but now I am at the 11th cycle and my hair is very thin. I wear a wig when I go out special, but it is ok during the day. I am unsure if I was working still how I would feel because I now wear it very short and it is noticeable. The good news is the drug is working for me so I will gladly accept the hair loss.
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into~ I have a full growing head of hair. Thick thick and it's really growing tons each month. Some people experience thinning, some do not, some have patches and sore scalps areas. But Z has shown can be alleviated with lowering the doseage and we learned excersise helps a great deal. Good luck and this is wonderful medication. These ladies are saviors sometimes when you reach your lowest point sometimes.
I just got back from seeing my onc. To go over the results that I had already knew about from my nurse friend who retrieved them early for me so I wasn t stuck worrying all week long waiting. No progression at all, I am considered very stable , I just needed to hear this from his mouth. Sometimes reading those things can be pretty scary. The terms used. Yuck. ! So I stay on ibrance 125 and anastrazole, and monthly blood work, monthly XGeva shots, don't need to see him again for three months, which I have to admit is music To my ears! I am sending out strength and blessings to all lovely ladies coming up to scan month or week even! I know exactly how it feels, I never thought I would be living my life in six month time periods at a time. Holding my breath along the way not wanting to hear. It's time to scan. Uh no! Hugs to everyone ~M~
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it is so weird how the mind works. I get scanxiety also, I always say I live in 3mo increments. However, what really gets me more anxious is when he wants to give me an extra mo to give a new treatment a solid 3mo to work. I am there now. Finished rads 11 days ago, I see MO Thurs to get the go ahead to restart Ibrance(round 19) then wait until Aug for new scans to see if the rads helped. I can't stand it, that's what I get etremely anxious about. Actually thinking I might have to call palliative care Dr and get something to help with this. Its worse than the other time. Anyone else deal with that?
Hugs and prayers to all-C
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My PCP says it's vertigo. She is sending me for PT. And if it doesn't get better, to an ENT. I relieved that I didn't have to do a bunch of testing and that it has nothing to do with cancer or ibrance. 😊
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Grannax2.....about 6 wks ago in the middle of the night had vertigo. Went to the ER wondering if I was having a stroke....brain tumor. They did a CT scan and did not show anything. Very scary....never had it before. Checked in with my primary dr and she said it usually takes a couple wks to go away or if not pt. And it took the two wks,,,,but I try not to bend over for very long just in case. Hope yours is gone in a couple wks too.0
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Bighome~ I have a pallative doctor and I adore her. She helps me in every area of my pain and fatigue. She listens and tries to help me because I don't like to take strong narcotics. So everything is very low doseages, she is actually my favorite doctor. I haven't needed radiation yet thank goodness but I have my share of bone pain, back pain you name it pain. And it never goes away. Don't look at seeing a pallative care doctor as a bad thing at all. They are there to help! I hope your pain improves. ~M ~. I can't stand scanxiety or scans. I hate cancer period!!0
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Grannax, a few yes ago I had vertigo. Was called Benign paroxysmal positional vertigo(BPPV). I had to do the Epley maneuver to get rid of it. It was just as u described it...everything swirling around me. I've been thru so much with this cancer but THAT was the worst thing ever.
I had a mini surgery biopsy on one foob and it seems that doc might have kinda fixed a TE a little so it doesn't bother me as much. They keep aspirating bloody serum and then it gets filled up again causing pressure on my chest. Maybe I'll get implants soon. Fed up of these TEs.
Happy mommy's day wkend to all!!!
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Dancingdiva yes it was scary. I thought about going to ER, too. I'm so glad I didn't. I love my PCP. She cut right through the BIG C to see that this had nothing to do with cancer ( like you said Z). She also said if it doesn't go away, they will call it Meneres disease. I sure hope it goes away.
Thanks everyone for your encouragement.
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Grannax2,
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Grannax2,
I had that a couple of times the first few months I was on the Ibrance. It scared me also but thankfully I was home when it happened. I spoke to my MO who stated it sounded like vertigo. I had never had this before. However, it only happened a couple of times and that was it. I have not had it since. I hope the same for you!
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Hi everyone, like all of you, I have scanxiety and I'm so happy to hear of women on Ibrance for many years but what's giving me the anxiety now is I'm just finishing my 17 rd. and the longer I am on it, the more I worry as I get closer to the 23-24 months time to progression we hear about. I keep wondering when it's going to fail me? Anyone else feeling that?
As for those of you with thinning hair, mine was also and it got very thin. I started using 10 mg of Biotin almost a year ago and it is now getting much thicker. It's actually coming in more curly again like it did after I lost it all in the first go round with Chemo 26 years ago. So, don't despair, it can get better, it just takes awhile. For WIW, my onc said it wouldn't work, I think he was wrong at least in my case.
Happy Mother's Day to all,
Faith (in the future)
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Faith,
Thanks for the tip on Biotin. I will try it!
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I've been in treatment for Stage IV breast cancer since 2005. Xeloda recently failed me after working for over 3 years.
Oncologist started me on an Ibrance/Faslodex combo. I have taken 2 cycles of Ibrance so far.
I had blood drawn yesterday which shows my Alkaline Phosphatase value jumped from 153 to 354 in the past 2 1/2 months. Can starting Ibrance affect the alkaline phosphatase numbers?
Since starting Ibrance I've had stomach issues. Pain, indigestion, nausea, vomiting, lack of appetite. So far Clinic is considering the stomach problems to be side effects of Ibrance. But late last night when my liver enzyme results were emailed to me that's the first time I saw how elevated they are.
Kessala
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Kessala - That 12+ years stage IV ... holy cow. You have more to teach us that we do, but I can tell you that I've been nauseas for months and my liver enzymes never blipped. Never quite sure what it is. I don't worry about it much because I can get down a decent diet and it helps me maintain my weight despite the hormone suppression. I am prone to weight gain but I have been able to keep stable because it takes effort to eat these days ....
I will say that the stomach issues were worse when I started Ibrance. In hindsight I chalked that up to stress of early diagnosis ... I imagine this new progression has your mind whirling. But perhaps there is an adjustment.
Regular moderate exercise helps minimize all Ibrance side effects as well as get your mind of your impending demise (which is not actually going to happen).
Welcome
>Z<
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Kessala, I am on the 5th cycle of Ibrance/Letrozole. My liver enzymes have been normal since starting this duo, including the alk phos. The only GI issue I have with these past 5 cycles is increased bms. (1-2x/day from 1x/week). Drinking half gallon water daily helps prevent constipation. I have tolerated these drugs fine. I did have dose reduction from 125 to 100mg due to chronic low platelets on higher dose. It is so good to hear from you, especially knowing you have had a long journey with this crappy metastatic dz.
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This is my first post i stumbled across this forum while looking for info on ibrance. Im 35 was just diagnosed with bone mets 2.5 weeks ago after having bilateral bc in september 2015.
Im so envious of you girls in the US who can get this drug. Im currenty trying to get on a drug trial for it here in Australia, but it looks like i wont be accepted because i had 2 separate primary breast cancers:( The only other way to get the drug is from your doc starting mid may but its apparently going to be very expensive so unlikely ill be able to afford it. Its devastating to know there is a drug that could prolong my life and give me more time with my 2 kids (6 and 9 yrs) but i cant have it because im not rich! All the docs agree id be perfect for this drug too. I understand it may not work more me but i atleast want to chance to try!
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Babysaurs, I am so sorry to hear of your struggles to get Ibrance there in Australia especially with you being so young. It is very expensive for me too. My normal co-pay for drugs on my insurance is $10 each Rx but I have to pay $150 each Rx for Ibrance. I have no idea how much more my insurance co has to pay, but I am sure it is a lot. But you are right that if it prolongs my life, it is worth it. I will pray for you and that your docs will find something that works for you there.
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babysaurs sorry you have had to join us. Do not feel disheartened. There are many options you can avail of if you can't access ibrance (look into Pfizer compassionate fund or some kind of course pay too). You will read here that many women have don't well and taken hormones and oral chemo for many years and done very well before they had access to ibrance. The women over on the bone met thread are all on various different treatments. I read above that Kessala above has been stage 4 for 12+ years, not without difficulty I'm sure but very inspiring for us to hear and is only starting ibrance now. Does your oncologist have a plan of action? My breast care nurse told me on Wednesday that she has a former colleague who presented with bone mets 15years ago (she had to think for a while as she left that hospital) and is still going strong, she bumped into her last month and seemed to be living her life. It didn't even come up in conversation! I wish it had as I wanted to know all the details. There are many options if you can't get ibrance yet.
Kessala I hope your side effects ease up. I'm sure the ladies who have been on this longer will have better advice. 12 years is amazing. I hope this drug works well for you.
Faith scanxiety is always awful but as mentioned by some of the other ladies there is a woman on her 41st cycle. Hope that's you too.
I'm heading in for bloods this morning. I only made it to day 13 before nuerophils dropped to 0.9. Had 5 days off so hopefully my levels will have recovered to restart! Like you sandybeaches if this continues they may reduce dose.
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