Ibrance (Palbociclib)
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42young - I think you’ll be amazed at how “okay” you are. I taught a 3 hour class in physiological medicine to graduate students the next day. Don’t worry! Maybe make sure you know where a bathroom is just in case of diarrhea. I had just ONE bought of diarrhea day 2 and then no issues for a long tome
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42young - I started noticing dry skin (eyes, nose and throat) in about a week. My sore throat has since resolved but still I am still quite dry; drinking a lot of water is a must for sure. I've suffered from severe fatigue for quite sometime (pre mbc diagnosis, but post recurrence) and it seems to get worse the closer to day 21 I get and then my week off, let's me recover nicely.
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thanks everyone for your kind words. I wish I could thank you all personally, but am typing with one hand as when I bend my IV arm the darn machine goes off. Nurses and I are playing cat and mouse. I set off an alarm, then they get back at me by enabling the bed alarm so when I stumble out to pee in the middle of the night I get the full lights and sirens treatment. It’s adorable.
Appears I have more to worry about than GI issues. CT showing liver involvement. That’s a mother may I giant step forward. I’m still processing but will come back to you with advice. On GI front, I had an endoscopy 6 weeks ago but will get another tomorrow. CT shows my esophagus is dilated-apparently non-functional. So there’s that. Will write more as info comes in. You guys lift me up.
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Jaylea, this is part of a post you made to my good friend Lynn when she was struggling. I've never forgotten it.
"Plan in place, check. Confidence in decisions, check. Head held high, check. Friends supporting you every step of the way, check check double check. "
This is where you are going to be very soon. Friends supporting you every step of the way is already a big double check.
Lifting you up with all my strength. I'm pretty weak but I turn into Superwoman when I really need to.
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Jaylea, what is the saying about when it rains, it pours?! You have all possible options available if you at this point, so will be interesting to hear what they suggest for the next treatment..
Novagirl - from your comment way back (who can keep up with this thread?!) - I did not realize that HCQ is FDA-approved for malaria! I will ask my MO if she will prescribe it- tho I bet the answer will be NO, because: 1) I don't actually HAVE malaria (one bright part of my life), and 2) the FDA has not approved HCQ for anti-cancer use, although there are lots of reports of its anti-cancer properties in the literature, and especially about its role preventing drug resistance from developing. HCQ is a chloroquine derivative, so maybe we should just be drinking tonic water?
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42Young, I agree with the others. You should do fine for awhile with perhaps increased fatigue and dry skin. You will find that drinking lots of water helps with most ses. I continued to work for about a year, but then since I was retirement age, I chose to retire to spend good days enjoying life. And I am still kicking and enjoying retirement 2 years later. We are here to help you through as much as we can long distance.
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42young, just live your life and know that you may have no side effects to amount to anything. Even the fatigue is not an immediate thing. If you feel any dramatic change in the next few weeks it will probably be because your counts are low. But I'm more than two years in on these drugs and don't have low blood counts. Nausea is my major side effect. That and heartburn but those took a long time to kick in.
You're going to do just fine. See Jaycee's friend's quote above. God bless you.
Love from PatGMc
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Jaylea, I'm praying for you right this minute. God has not moved his eyes from you.
With love from PatGMc
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Jaylea,
I hear your humor in your posts and you keeping your chin up...your description of lights and alarms made me smile. Thinking of you and sending vibes of support and warm thoughts.
Had onc appt today, on 3rd cycle of Xeloda and everything seems stable.. may have scan end of March. Hang in there everyone!
Grannax how are you doing? Has anyone heard from Leapfrog?
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42young, I'm fond of telling "newbies" that if I knew then what I know now, I'd have danced around the kitchen after taking my first Ibrance instead of bursting into tears! I'm in the middle of cycle 21 at 100mg, and my side effects are minimal - tiredness (which I resolve by taking cat naps), and that's about it.
I have no active tumors - had my primary tumor removed during the surgical biopsy (surgeon suggested it, I was thrilled), and one met to the spine that has since disappeared. Next PET is scheduled for July, and I expect no changes!!
This is a wonderful site for support, and no matter what you experience, someone here has had it (and dealt with it) before!!
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Thanks everyone. I really appreciate your comments. I drove to work today & have not felt any difference so far. I hope for minimal side effects. Thanks again for helping me through this diffucult journey.
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42young...I can say, I've had very minimal side effects from Ibrance. I just started my 11th cycle of 125 mgs. If anything, I've had bouts of explosive diarrhea. But, a lot of that depends on the foods I eat. I can't even complain about fatigue like most have. I think you will be surprised how easy the Ibrance journey might be.
Jensgotthis...Thanks so much for the list of podcasts. Like you, "Cold" just blew me away. There are some you listed that I haven't heard...so thank you, again!
Hope
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Jaylea....Keeping you in my thoughts and prayers!
Hope
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A piece of my front tooth fell out the other day..not even eating anything..To match had crowns put on both front teeth..My OLD teeth drilled to stubs..Had them long time😁 Am I out living my teeth or is it I/L??? On positive side temp crowns and then permanent ones be whiter..They were dark and I like color much better..thus enjoy my smile more!!! Any comments thoughts or experience s..started to google it ..said nope BC friends know more!!!
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Lakewoman;
When I was first undergoing treatment I had an inoperable tumour in my supraclavicular node. Following chemo I was blasted for a month or so with radiation. They really did a job on the tumour and I still have radiation burns in the area (so high neck blouses etc. are my look). However, what they didn't do when they radiated me was protect my head in any way....and I never thought about it at the time. All of my teeth ended up with holes in them (god knows about my eyes and brain) and I ended up having to have caps on ALL of them.....very expensive!! I will say they look nice but be warned about the devil radiation. In fairness even with a poor prognosis originally I did go 11 years before my ovarian cancer and almost 14 before my mbc.
Love you all,
Cathy
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TY for your input Cathy..So far no radiation needed. But now am prepared with knowledge thanks to you.😁
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Honestly, for how many years would OncLive like to post comments with the exact same take-home story, namely that the CDK4,6 inhibitors work well and have similar efficacy?!
The latest one, posted today, has a tiny bit more to add about what we are to do when we have progression:
...patients may develop ESR mutations, RB mutations, and PIK3CA-activating mutations, for which FGFR inhibitors and the PI3K inhibitors—buparlisib (BKM120), taselisib (GDC-0032), alpelisib (BYL719), and gedatolisib (PF-05212384)—are being investigated.
Specifically, for those who develop PIK3CA mutations following prior endocrine therapy with CDK4/6 inhibition, interim data from the SOLAR-1 trial showed that alpelisib induced a prolonged OS when added to fulvestrant compared with fulvestrant alone...
Looking toward the future, Stilwill explained that CDK4/6 inhibition has shown preclinical synergy with PD-1 inhibitors (ie, immunotherapy), but whether it can enhance response rates in these patients remains to be seen.
So in short, they recommend sequencing for the new mets, and say we still have no answer as to whether we should be getting immunotherapy with the Ibrance...
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just off phone with MO - we are going to take an Ibrance break (not a long one) just to see if it’s the Ibrance causing tummy issues and if that doesn’t seem to be the culprit then give the Lexapro a break to see if that’s causing all the excitement in my belly.
I’ll report back when we have more info
Thanks for all the support lovely friends!!!
Brenda
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Philly, two questions:
1. Why not take a break from Lexapro first?
2. Why not lower the dose of Ibrance instead?
These just seem like better options to me. But I'm all talk. As I've said before, I take breaks from Ibrance all the time but I am on the lowest dose. Not a long break, right? Like an extra week off?
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Jaycee great questions! I guess he’s thinking that if it’s the Ibrance we should find out sooner? Also I only have 4 days left of the 21 day cycle and so it’s maybe easier to stop early and yup exactly, take like an extra week off the Ibrance it sounds like he thinks it’s not a huge deal to do that.
He didn’t seem incredibly concerned but I am trying to be a “good” patient and would rather nip something in the bud instead of waiting it out these days. I used to wait until I was practically on my deathbed with illness before going to the doctor, now I have zero hesitation calling the MOs office with any symptoms that arise that are out of the normal.
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Oh wow a bit of a deluge re SEs and stuff happening with everyone.
Jaylea... hang in there. Trial and error for the medical team and yourself as we all know - you seem to be in the hard place right now. Really hope things calm down and a plan made which improves your QoL!
42young welcome - I’m a newbie here too but 8 months down the line on 75mg Ibrance as my body just did not recover on the higher doses and still not coping with 3 weeks on 1 week off cycle consistently... I need another week for counts to recover. But I’ve never been floored completely and have eve had a cold, which would have put me in hospital previously but didn’t on this regime.
Doing fine really and now NED - apart from everything hurting ( Letrozole SEs I think) and the runs (diarreah) both of which are actually quite manageable for me, although I’m very heartened to hear other folk have had a couple of accidents and carry around wipes adnnspare underwear .... me too! Embarrassing but hey in the grand scheme of things....
We’ve just had the most fab weather for Scotland in Feb...warm sunny and feels like spring. My husband and I walked 8.5 miles yesterday in the lovely Perthshire countryside.... and I wasn’t even wiped out today. Result!
K
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Morning to all my friends.
Jaylea--- Praying for you, my friend. Your last post ( I read just now ) said you were having a scope, yesterday? Any new news? Anything we can do to help, just call on us. Wish I was there to be with you.
42Young- We have your back. Any questions you have, we will try to help. Praying your Ibrance Dance is long and well tolerated.
Cure-ious- I seem to come back to the same thought. Your post said in part, " patients may develop …..mutations" and "for those that develop....mutations...". Soooo, my question remains, when we have documented progression---i.e. Jaylea's situation with now liver involvement what testing is done to see what mutations we have developed and what meds are now used?????
LovefromPhilly-- Hope your tummy issues resolve and you get back on the Ibrance Dance soon.
So a report from here--- I saw my MO this morning. I told her about the chills I had last week and that I have had them before and never thought to mention it. She asked if I had just had my port flushed. I said, as a matter of fact I had it flushed that day and the chills happened that night. I don't remember if it was that way with the times before. She said we will have to monitor the next time because we could have flushed some bacteria into the bloodstream and I was fighting off an infection. I told her that I was not running a fever---I checked my temp. She said with our low white counts we may not respond with an elevated temp on the thermometer. She said this MAY have been the reason. I plan on watching and recording any more chill episodes and as LovefromPhilly said I guess I need to report to the MO rather than waiting. Next, I mentioned the fatigue issues I have. She said fatigue is to be expected. She said she would not be surprised with fatigue with Letrozole alone, much less with Lupron and Ibrance use also. She said light exercise, a walk for example, is good. But not to feel bad if a nap is needed during the day. And not to be hard on ourselves if we see we cannot keep up the pace we once had. She said to do things that make us happy. If that is reading a book, then we should do that. QOL I guess is what she was saying.
So, the rest of today I am staying in the warm house with my cat at my side.
Hugs to all.
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Hi 42 young,
Sorry we find each other here. I was diagnosed a month ago and just finishing the first cycle. I'm having hot flashes a few times a day, joint aches, fatigue, and a drippy nose since I started but otherwise doing OK. Still working and exercising 3 times a week, so I guess it hasn't impacted my life too much. Lots of vial and flu related illnesses here in Chicagoland where I live, so just trying to stay healthy as my counts are low. I think you should be fine to drive tomorrow!
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Candy...Your MO sounds very caring. Interesting about the chills and port flush. I've never noticed chills, but I will be more alert.
Thinking about Jaylea and hoping to her some good news.
Hope
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42young, sorry we meet here but glad we have a forum to ask questions and seek out others in the same boat. I am a month into my diagnosis and 3 weeks into ibrance. Working full time and going to my exercise class three evenings a week. I'm fatigued (especially this week as counts have dropped), have generalized aches, my nose has been dripping since I started, and a few hot flashes a day. All in all it's manageable and life seems like it's going on as usual!
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candy- yup, every drug we take puts a selective pressure on cancer cells to mutate so that they can start growing again- the cells mutate randomly, and most of those mutations have no effect or even make the cell die, so the process can take a really long time, but eventually a mutation will arise that allows the cell to grow and it then quickly multiplies up even in the presence of the drug. So sequencing after progression will show what has changed and see if there is a drug that will best handle the cancer, plus the cancer can change to HER2-positive or triple-negative..
Immunotherapy is a different deal, and I'm not sure if cancer cells can mutate in any easy way to avoid being eaten by an immune cell that recognizes it as foreign. Radiation or chemo can help make immunotherapy work better by blasting open the cancer and sending pieces out into the bloodstream, where the immune cells can get at them and through that process the cells learn what specific cancer proteins they should go hunt and kill. Because it is so different, it seems a good idea to mix up immunotherapy-based treatments with drug-based treatments.
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Cure-ious, that is the best and most succinct explanation that I have ever read. We are blessed to receive your knowledge on this forum. Thank you!
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into the light-I couldn’t agree more, Cure-ious explains things so perfectly.
Cure-ious let me know what your MO says about an HCQ rx. I’m going to ask too. I looked up the side effects and they seem pretty terrible so I’m sure it will be a NO.
Jaylea I’m so very sorry to hear about new liver progression. I hope you can be out of pain and into your next treatment that will knock it back. It’s jusy so utterly crappy and I’m sorry.
KelQ and 42young I wish you both a long time on Ibrance with minimal side effects. I’m on my 3rd cycle and I’m praying I’ll have good scans and can stay on this for as long as possible.
Cicai I love the advice you give to newbies. Wow, that’s great. I’m trying to focus on that.
Frenchorn I’m glad you are stable on Xeloda. I hope it stays that way
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Novagirl, if you look at my avatar pic, it's me driving an ATV in the Nevada desert last year - something I absolutely NEVER would have considered, pre-cancer! My Stage 4 diagnosis (or, as my onc calls it, "the best kind of the worst kind of breast cancer") has given me such an appreciation for what I CAN do...
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Jaylea....you are in my prayers.....Curious..WOW...thank you for sharing all that knowledge. I have question...does anyone use Hemp oil for sleep? I have tried everything....over the counter sleep aids help but wipe me out the next day. My Onc says the over the counter builds up in your system. Sleep is so important.0
