Ibrance (Palbociclib)
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Haven't been back on this thread for a couple of weeks and missed some of the answers some of you posted- so a belated Thank you! Had my lumpectomy for this recurrence on July 11 and am meeting with SO and RO tomorrow. Will start radiation in about a week and then Ibrance + Femara. So far I have been told this is a local recurrence, but I have some inflamed lymph nodes in my chest area so I have to have a bronchoscopy on Wednesday to determine if I have lung mets or not. (radiation report from pet scan suggested it was probably "sarcoid-like reaction" so I am hoping for that. MO said he would treat me with Ibrance and Femara either way. I am scared of the side effects but thankful that these drugs exist and seem to be helping so many.
What were the worst side effects for you? How did you manage them? Were you able to keep working and maintain a somewhat normal life with these meds? I would love to hear your experiences. I've been reading back through the thread, but there is so much to piece together.
Thanks and love to all of you.
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Philly, I’m in Effexor and know that it helps my hot flashes. I don’t seem to really have them at night although I do everything I can to make my sleep space cool. My combo has been linen sheets, a standing fan that I use when it’s very warm at night (eg, 70 or higher), and keeping my feet uncovered. Rather than flashes per say, I just find I’m hot during the day. And, If I’m doing something very active, I sweat more than I did.
My son is grossed out if he accidentally touches my arms, which are often covered in a cool sheen of sweat. I’m definitely glistening. lol
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Hi Maureen,
Welcome to this thread. My worst SE is fatigue. I try to get 30 mins of some type of exercise in each day. That seems to help. I also eat small meals and take supplements to support my immune system. I am going to try acupuncture tomorrow so hopefully that will help also.
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Nicole - what wonderful news. Keep on the docs if the cough gets worse. But yay for a clear chest x-ray.
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Hi Philly - Like Jen, I take Effexor, as well. I believe it helps but I’ve been taking it for years (since early stage arimidex) so I’m not sure how much worse they would be without it.
Maureen - everyone is so different with these side effects and one thing you will find is they don’t tend to be consistent month to month - which is why Pat has dubbed it the Ibrance Dance. The two constants are reduced whites (and sometimes also reds and platelets, but not as much as whites) some folks find they have to reduce the dose to manage the white count reductions. The other is fatigue, which ebbs and flows during the cycle, at least for me and is usually worst during my week off. Most people have some hair thinning, but this also varies widely and isn’t consistent month to month.
Love to all,
Lauren
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People talking about the side effects changing during week off got me to thinking... anyone else out there see no difference between "on" and "off" days? If I didn't have that missing Ibrance bottle after Day 21, I wouldn't know if I were still taking it or not.
My side effects (mostly fatigue and achy joints) are always at exactly the same levels.
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thanks for your posts Lauren and Jen!
With regards to SE’s, I am with folks on the ebbing and flowing fatigue and low WBCs and funky RBCs. Joint pain and a bit of GI upset (acid reflux, mucositis, etc) are in there for me too
Cisco I sense that I am more fatigued when I am on my week off but I don’t know if this is psychosomatic or not? I mostly find that if I lay around most of the day, the fatigue is strongest and if I force myself out and about the fatigue seems to be less. It’s the getting myself up and out that seems to be the most difficult most days. I drag a LOT in the mornings.
I love a delicious afternoon nap, a good massageand the hot tub at my gym!!!!
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Ciaci- I too do not notice a difference in my week off. My side effects--bone and joint pain, heel and feet pain (go figure), hot flashes, fatigue, hair thinning, heartburn, constipation. Good grief. When you type out the list it sounds horrid. But my side effects do not seem to change with the time of the cycle of meds. I cannot tell my "on" and "off" days either.
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In regards to low blood counts, we do my monthly labs a day or 2 before beginning of the next cycle so the white count will be rebounded from the last cycle and at its best point. We do not test during cycle to see how low they go. We did when first started med and they did drop significantly during cycle.
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I don't see/feel any difference. Remember, some of the SE you mentioned may be from Letrozole which you keep taking on the week off of Ibrance.
Had my MO yesterday. The regular three hour upstairs/downstairs ordeal. Wears me out. My regular nurse was on vacation so I had a sub. The doctor asked for me to come back in four weeks, as usual. She sends this info to the nurse by computer message. The sub nurse made the appt for Aug. 23. Yesterday was July 23. That's four weeks later, right? Nope. That's a month. When I got home and saw that (should have noticed it while I was still there but my brain was fried after three hours), I had to call them and get the appt changed to Aug. 20, four weeks later. I have to have blood work before I start new cycle on Aug. 22. My MO is really strict about that. Check ANC before starting next cycle.
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Jaycee- True the Letrozole may be the culprit for some of those side effects I mentioned.
Sorry for the frustration you had with your MO appt/rescheduling. We cannot let our guard down and must advocate for ourselves all the time. I had appt for my MO today, but yesterday I received a call from the office saying something came up and they had to cancel. We rescheduled for next Thurs. My MO used to see me monthly, at the time of my labs before the next cycle too. But a few appts ago she stated she would see me in 6 weeks vs 4 weeks. So I continue to get my blood drawn when due (local hospital outpatient lab facility). I thought the monthly office visit worked out better but she wanted to change to every 6 weeks. ??? Maybe she is too busy with her patient load. And I am 'stable' for now.
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I'm now finished three cycles of Ibrance 125 - the first month I felt amazing on the week off, but for the next two months I have noticed fatigue and constipation for the first few days of my week off. Exercise helps with the fatigue big time. I'm a bit limited because of compression fractures in my back but I squeeze in a couple miles walk each day plus PT exercises I'm doing at the moment. Way more hair coming out in the shower than usual. And bruising at the drop of a hat. My platelets are fine so I'm not sure what's causing that. ANC has been holding right around 1.1-1.3. I'm still pretty early on and expecting things to settle in but I'm always ready for anything on the Ibrance Dance.
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Moo... I am on my third bottle of Ibrance (I still don't understand the "cycles" even though it was explained on here) I too am having a lot of hair come out in shower. I don't notice a difference on the week off but I am going to try and take notice of that when I end this bottle. I have some fatigue but mainly when I do stuff like wash the car. I have some hip joint pain if I sit in a certain position too long. My biggest SE's and the one constant is this raspy voice (no sore throat) The lingering chest congestion cough from the URI I had 2 weeks ago. Other than that I am just praying it is working. I did get the eye twitch again the other day but even that has died down a lot from the first bottle. I did work out this week a couple of days and didn't notice too much left lower back pain or left hip pain so I am praying that means its working!
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Nicole, I keep track on this calendar I got from a magazine offer. It's posted on my fridge. I don't need to consult it anymore, unless someone asks what cycle I'm on. My cycle numbers are on the edges.
Think of opening a new bottle of Ibrance as the beginning of another cycle. You don't start on the same date each month, right? Next Tuesday I start Cycle 27 and on Wednesday, I complete month 24.
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Thanks Ciaci. It definitely is easier looking at it that way. I NEED to get something like that to hang on my fridge.. once I get back to being in my own home
We have been on an air mattress at my ex- brother in laws, before that we were on our sons couch in a 1 bedroom apartment and not in our own home for almost 5 months now It has been really really hard. All this because I came here to NY to seek treatment and be close to family until the military could move us from Hawaii. I thought being near family would make everything ok....but now...I am thinking that it might have made things easier to be in our home. I should add in we have been in NY since April. February to April we were in California while I was getting my BMX we stayed in a Fisher House there...(it's like a Ronald McDonald house but for military families). I found out 2 days before we were suppose to fly home to Hawaii that I had Stage IV...so I went right to NY from Cali to consult at MSK and Columbia. So that's why I have been away from our home so long. The 2 blessings though is I LOVE LOVE LOVE my MO at Columbia and that the Military has temp. stationed my husband here in Long Island so he is with me for all this. On a good note...our home in Hawaii was packed out last week by dear dear sweet military friends and we check into Quantico VA our new base Sept 1st. Praying we have an on base housing available when we check in. I just need my own stuff back ya know?
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Ciaci, I just looked more closely at your calendar. I do that same thing on my Google calendar on my phone. I don't do the whole year in advance though. Way too optimistic for me.
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NicoleRod
Calendar Labs has great templates you can download. I'm looking at them too - having everything laid out like that really could help you keep track. Hopefully we'll be on Ibrance a nice long time like Ciaci and others! I'm in NY too but clear on the other side of the state. You are in a great place to be getting advice and treatment! I went to a wedding at Quantico some years back. It's so pretty there. I'm feeling really sad for you. That is a lot of uprooting and upheaval while going through the early part of this dx. I don't know that I could have done that - you must have a superpower because that's a lot! I will be so happy for you when you can get settled somewhere.
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Moo...your post made me cry. in a good way. I just really felt like you "felt my feelings". It really has been so hard. One person said to me..."what is weighing the most on me with your situation Nicole is not even the diagnosis, which in itself is awful, but the fact that you cannot even curl up on your own couch or bed with your favorite blanket etc."..... After she said it...it hit me and I was like my gosh...yes exactly
Quantico is really pretty it looks very similar to where we are in Long Island which is where I grew up. We find out August 1st how long our wait will be for housing, we are praying it wont be long because from Sept 1st on we will be in a hotel
So we welcome any and all prayers 
Thanks for that link I am gonna check that out!!
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Jaycee, I'm always optimistic - but if anything changes, I'll toss it, LOL. It was free with some magazine offer. I didn't even buy the magazine, just used the calendar
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Hi PatgMc, thanks so much for your response! The week off went really well and yesterday I started round 2 with IF however I'm a bit more concerned this time. My WBC was at 8 when I started the first round and fell l to 3.7 after the first two weeks and although it's back to 4.2 after my week off.....I'm going into the second round with much fewer WBCs and ANC is still falling ....now at 1.52
Do you think that seeing as I already have so much of the IF in my system, from the 1st round, that it won't fall as much this time?
I know that everyone is different but I'm wondering what others have experienced.
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Ginny, my ANC hovers between 1.0 and 1.5 when it is tested after my week off.. It just stays there. The only time it goes any higher is when I skip some portion of the 21 days on Ibrance.
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Thanks Lauren, you just answered some of my questions!
I’ve also enjoyed hearing some of your humor. It s certainly uplifting! Thx
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Thanks Jaycee! Seeing as my ANC was at 5 before my first cycle and now starting 2nd cycle at 1.5 ....perhaps mine will settle there too . 😎
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I started with 100 mg then had to stop due to low ANC- 0.6. Resume after 2 weeks, ANC was still low around 1 & hemoglobin also went low to 11 at day 14, so i asked to lower to 75mg
I'm on 75mg for the last 4 months & my ANC is stable around 1.5 -1.8, but my hemohlobin is still low 10.5-11. My first scan shows improvement.
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42young- thanks for the onclive link!!! They need to do more of these discussions and analyses of what to do post-I-F! It seems everything added on to Faslodex is good for 10-11 months (PFS), but not more- why?! This seems to be the case whether the add-on is a CDK4,6 inhibitor, PI3K inhibitor, AKT inhibitor, Alisertib, etc etc... Pi3K/Piqray requires the cancer have PI3K activating mutations, but that seems not be true for the AKT inhibitor- how do the SEs compare, etc? There seems to be very little discussion about this topic, given the numbers of patients facing the question of what's next..
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Jaycee, why did you have to skip at times on Ibrance?
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Cure-rious, yep, all of them seem to have short life. I hope we'll live long enough to benefit from immunotherapy some day.
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My daughter's breast cancer was Triple Negative so my ears are always tuned to drugs for her should she recur. This article is pretty exciting, especially the part about a doctor prescribing off-label.
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I shouldn't have spoke so soon...sore throat now!!!
but my glands feel swollen too....can I be getting sick again??
I have 11 days of Ibrance left so I am not on the last week.
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