Ibrance (Palbociclib)
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Josalo, I'm so sorry about the brain mets. Please be hopeful about getting rid of them. I have one friend who had Gamma Knife for MBC many, many years ago and she is still NED. Another had whole brain irradiation about 6 months ago and she's doing great. I pray the same happens for you.
Love from PatGMc
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Josalo, brain mets are scary, but there are a lot of treatments available. I'm woefully uninformed, but there is a thread called Brain Mets Sisters that is active and helpful. I know there are new treatments that pierce the brain-blood-barrier, and of course cyber-knife and radiation.
LovefromPhilly, couldn't agree more. Cultural, religious, and personal diversity disappears here; what remains is love, concern, and support.
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Josolo,
Thank you for joining us here and for sharing your story. There are no words to make it all go away...but we are here to hold your hand (cyber-like) and help you get through this scary time.
Gumdoctor
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Ugh! Where to start? I saw my oncologist today, monthly appointment. LFT’s mixed-ALT, AST up to 73 and 80 from 32, and 40. My ALK PHOS down 6 points though. Scariest thing is my tumor marker. Had gone up from 182 on 9/28 to 632 on 10/26. Now 4 weeks later it’s more than doubled to 1,311. My doctor wants to keep me on Ibrance even though I was only on it for 2 weeks before I had to stop due to low ANC. Started 100mg today. Blood tests in 2 weeks, may have a scan in December. I feel great, no pain anywhere to speak of. Could tumor marker be ahead of scan? More sensitive? Doctor said if liver were in bad shape bilirubin and other liver tests would be off. He wants me to stay on it for at least another monthto “give it a chance” How long do tumor flares last? So sad and confused. Onto Halaven if this fails.
Jill
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josalo - sending you lots of positive thoughts and prayers and holding your hand through this message!!!! We are here for you, please keep us in the loop.
Jill - so sorry that you are having the scary numbers! Looks like you recently started Ibrance? I know it is hard with the scary lab results but hang in there and try and breathe and be with your loved ones and get fresh air. Ibrance takes a few months to kick in. I think for me it was about 6 months before we could confidently say it was working. And my numbers get wonky sometimes but then even out again. It's the “Ibrance Dance." Hang in there!!
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Hobbes, please continue to post here anytime you wish. We are here for each other for the good and the bad and everything in between.
I’m sorry to hear news of progression for friends here and to have new friends join, even though I’m glad you found us.
Jill, your rising TMs are concerning - tumor flare is pretty common in the first couple of months but I can’t recall what I’ve heard about typical impact on TMs other than they can rise. Can your next scan at least be moved up?
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LovefromPhilly-thanks, I'm trying to be patient. He did say that Ibrance takes a while to work, it's not immediate like chemo was for me. I asked about brain or lungs as I don't have any involvement there but he said I would have symptoms-balance, cognitive issues, headaches, breathing issues is the rising TM was reflective of disease in those organs.
jensgotthis-I've never experienced tumor flare. When I started A/C chemo in June my tumor marker was 876 and it consistently dropped 100+ points every two weeks. No tumor flare with chemo? Only endocrine therapy? At two week mark with this new 100mg Ibrance he is doing LFT's as well as CBC to stay on top of it. If those are still rising as well I will have scan on 12/21 when I see him.
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Josalo- Thinking of you and praying for you. Keep us informed.
Grrifff- Definitely see if they can do scan early. And keep us informed.
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Josalo- Prayers, hugs, and here’s to hoping that they will come up with a good treatment plan for you to get rid of the nasty brain Mets or at least alleviate some of it.
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Josalo, good luck with this new twist! Grrifff, best of luck to you, too. This is all so scary, and especially trying right here in the middle of the holidays.
Will be thinking of both of you and praying for good news ahead. Hang in there, girls!
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Hey ladies, I am on my 8th day of Ibrance. Over the past few days I've noticed that I have a lot of fatigue, which I expected. But it's getting to the point where I'm actually falling asleep sitting up. Unless I'm moving around and doing something, I begin to fall asleep. I can be mid conversation or halfway through a movie and I can literally not keep my eyes open ( This is not me, I'm a raging insomniac and usually I'm fighting to fall asleep). I really don't think I'm anemic...anyone else experience anything like this?
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Bubblebeard
YES. I have had the sleep issue just like yours. I'll be on the computer playing a game or watching a movie and I'll fall asleep. You can almost feel yourself fighting it A couple of times I've felt it coming on in the car while driving. Now that's scary!. I roll down windows and turn the music up loud but no help really. Plus at bed time, I'm asleep before I hit the pillow. Now that is not me. Never have I fallen asleep so fast. I've been on Ibrance, well I'm toward the end of my second cycle. But I recently started Xvega and Tramadol so I didn't know which med was causing it. But it's getting worse. Another thing that is worrying me is my ability to think clearly. It just seems like I'm drifting along in a fog. Days and nights are running together. Strange
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so I am not alone...but sorry you are fighting it too! I am on sooo many meds but this started after 5 days of Ibrance which was too much of a coincidence (i try to stagger when i start meds if i can bc it makes it easier to narrow down side effects).
I have also felt it in the car, watching tv...basically whenever I am not up and physically doing something (and even then i am exhausted and just pushing through)
I wonder if this will get better...if it was to stay like this I am afraid of a car accident with my little guy in the backseat. I am drinking soooo much caffeine and it doesnt seem to do anything
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Yes, I also worry about car accidents. I wonder how much longer I'll be able to drive. Not driving is almost inconceivable too, live alone in a small town. Need to get this figured out. Hope that you get relief also, you're in my prayers Hugs
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Hello everyone, I am just trying to catch up with the thread after having visited my brother during the last few days.
@Hobbes: Please keep posting. This community is not made only for good results but also for support during hard times. Everyone here is aware of the eventual fate ahead of us and we need to learn to deal with it.
I wanted to let everyone know, that my last week's staging results were fine. Still nothing can be seen in my breast, the whole tumor has just resolved under I/L. I have one enlarged axillary node, but it appears only to be active, not cancerous (I asked my MO if this difference can be seen in ultrasound, she said Yes). My bone mets are stable and have become even slightly more sclerotic under Zometa. All other organs are still clear. They had forgotten to take my tumour markers and took blood only at staging day. Usually, results take until late afternoon and I can call to get them the next day. But this time, the MO called my at 2 p.m. and told me that the CA 15-3 went down by another 22 points to merely 46, while the CEA is down to 1.3 (was something like 2.4 3 months ago). My MO seems obviously very eager to tell me these good results, which is rather understandable as they are also humans and have to tell bad results far too often. So off I go for another 3 months on I/L... :-)
@grrifff: With respect to tumour markers, I want to let you know my CA 15-3 history to show you not to give up too soon. At dx, my CA 15-3 was 38, then it went up to 149, 162, 171 (this was after about 5 mons of I/L). After 6 mons, I had a drop to 129 and since then, my TMs have been steadily decreasing to reach 46 now after 14 mons of tx. I strongly believe that I had a tumour flare, because most of my tumour mass in the breast disappeared until Feb 18, every though my (former) MO told me there are no tumour flares under I/L. I also believe that my currently a bit elevated TM is correlated with mucous tissue inflammation, which is my main SE from the Ibrance. Plus, my liver enzymes are also elevated, which might also cause TM elevation.
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NettaGER...just wanted to say Woohoo! Those are the type of scan results I hope to see...that is wonderful! It would def make all this exhaustion well worth it 💜.
I am not familiar with a "tumor flare". I will have to look it up. I have noticed a few symptoms I was having before i was diagnosed, that had resolved on the eribulin, seem to be popping up again (dry skin, lack of appetite, pain in my neck and some other minor things). I plan on calling my onc nurse Monday but was thinking it was bc i had a month off tx before starting the Ibrance and I have only been on that for 5 days...
i guess I am terrified this nasty thing on my liver is growing while the ibrance builds up in my system. It doesnt begin working instantly like chemo, right?
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Thank you ladies för your support. Feels nice in the heart.
It's better to know whats wrong. This group helps a lot to, chat with people that understands from another perspective, all the knowledge you got and wisdom.
I'm feeling quit ok not lost my hope. My friends and family supports me and I know they will set up a good plan for me. I will fight this one as well, 'just another brick in the wall*.
Yesterday evening I was aloud to leave the hospital and meet my close friends. We had planned a surprise to celebrate my best friend. We could not do the surprise but we had a nice evening anyway with laugh and tears
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Happy for you NettaGER, what a feeling:-D
Grrifff , I do not know what to say, just thinking of you.
Sharing a photo of my lovely evening yesterday. I'm the one with glasses.
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LOVE the photo, Josalo...beautiful and supportive friends. What could be better?
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Bubblebeard and Snooky-
Yes, I think most of the fatigue you are experiencing is from the Ibrance. But, Snooky, the tramadol could be making the sleepiness worse since it is an opioid pain med. It can also cause the fogginess you are experiencing. You may want to try a lower dose. I am on cycle 11 and the fatigue still hits but not as often as it did. A couple of months ago it hit at work and I thought "Oh boy" and took a break, walked around the office, and prayed I could make it through the rest of the day. But still today if I am at home comfortable in my recliner and watching a show I wanted to see, I may fall asleep in the middle of it. I wake up and think "darn it, I wanted to see that".
Josalo- Great pic. Glad you enjoyed your evening.
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i agree Candy... It must be from the Ibrance. Like I said I am really careful about staggering new meds to try to pinpoint as best I can where the side effects are coming from. I just didn't know if that was normal to be this fatigued.... To the point where I'm nodding off like a junkie 😕 ...
Seriously, I have some opiates left over from my surgery and my mom was wondering if I had gotten into those over the week, I am just so out of it 🤷♀️
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Hello all!! So for the past week I have been having horrible headaches with some dizziness off and on and have been popping Tylenol like candy.....today the one was bad enough that my vision even went kinda goofy and I was seeing double. I am planning on calling my MO's office tomorrow to let them know and see what they want me to do. Something just doesn't feel right and I'm worried. Have any of you experienced this and had it turn out to be nothing scary??
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Crazeejane, on Thanksgiving Day I woke feeling dizzy and light-headed. My family kicked in and helped do all the work, but I am still a little dizzy. I think it is because I re-started Ibrance after being off for a month for pneumonia (my first time off since starting 30 months ago.) I am hoping it all evens out so I am waiting, but I will call if it doesn't improve this week. You should still call your onc tomorrow because I do not have headaches or blurred vision. But just know these meds do strange things.
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CrazeeJane and IntoLight, I’m a little fuzzy on this but know that when I was around the 12 cycle mark, I experienced two or three episodes of extreme wooziness (but did not pass out). At the time, I shared and found others here who had had something similar. My MO reminded me to stay very hydrated and to keep my blood sugar leveland also did a brain scan just to be safe. I’m also on effexor, so tht could have been a culprit too.
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Hi guys;
I have only had this se once to this extreme but one night I was so dizzy I was bouncing off the walls literally as I tried to get to the bathroom. This then caused me to be so nauseated that I spent the night throwing up. The worse night I can remember. It lasted for about 12 hours and took a while to recover but it has never happened again....so far. I was likely about 3 months in. I take my pills in the morning and this began about 1:00 in the morning.
Cathy
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hi during my first few months on treatments (Ibrance, letrazole, xygeva and Lupron) I experienced crazy painful headaches (abnormal for me) and also had some intense stomach pains. I really don’t know what the exact culprit was but I would say I was “adjusting to the medications.”
Looking back at it now, I wonder if it had to do with the tumors “dying” off and that was a sort of die off response that I reacted to? Hard to know
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Hi all - I’m back from Orlando and 5 days of Harry Potter at Universal Studios. I don’t think I’ve traveled without a trip to urgent care since I started Ibrance. Ended up with a sinus infection, bronchitis and mouth blisters (viral). 3 meds and I am on the mend. Even still, I powered through it and my son, his cousin and orphanage-mate had an awesome time. Thankfully I had my best friend with me (she has no kids but loves Harry Potter) with me to make sure the kids didn’t miss a beat.
So I’m really sad to read the news from Hobbes and I am praying for your peace and comfort. Please stay with us to share how you are feeling so we can be there for you. This group exists for all of us - regardless of what we are going through.
Josalo - keep us posted on your treatment for brain mets - as Pat said, a lot of folks are able to treat those and move on. I hope that is also the case with you. Loved your photo with your friends - sounds like that was a pretty special night.
Missed you all - hoping those of you with headaches and dizziness are just experiencing some crazy side effects of our medical cocktails.
Lauren
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Had my MRI today of my brain.....good news is that my brain is good!! Bad news is that I have METs to my skull that we didn’t know about before so add that to the other numerous areas of bone Mets. I will now be having an MRI of my spine because my MO believes the METS in my spine could be putting pressure on my spinal cord which could be causing my headaches. I have been having some pretty serious lower back pain in the past couple weeks along with the bad headaches. He is also wanting to switch my AI once again to Falsodex instead of the Aromasin that I just started on Thanksgiving. Needless to say I am a bit disheartened and down in the dumps. It’s my 9th wedding anniversary today and I had a nice dinner with my wonderful husband but all I keep thinking is how many more times am I going to get to celebrate this day? I try so hard to stay positive and believe that I have a long time still but something in my gut keeps telling me not to get my hopes up. I just hate how unpredictable this can be
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Crazeejane, I am sorry to hear of your news. Just know that we all support you. I am sending virtual hugs believing in positive results for your future. Chris
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Lauren, I hate that you got sick on your trip but I'm really impressed you could do a week at a theme park on Ibrance....Amazing! You must have had some kind of magic powers!
Crazeejane, I remember thinking that my 26th wedding anniversary might be my last. It can really make you sad when you think the special moments are coming to an end. Guess which anniversary my dear husband and I will be celebrating In mid-January.......#50! Keep living your life, my friend, and remember that these days are precious days even though they may not be the seemingly carefree days of the past. I look forward to celebrating when you hit your next and the next and the next and......! God bless you.
Love from PatGMc
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