Ibrance (Palbociclib)
Comments
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Hello all....my sentiments exactly Myra.....Best wishes to all who are going through scans. I had an MRI yesterday and now I'm allergic to the gandolinium contrast dye. Isn't this fun? So glad to be able to touch base with all of you. Thank you for your help and guidance.
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I finally started IBRANCE yesterday. I am hopeful. I have been following here and hopefully know what to expect. Thank you to all of you for being willing to share your goods and bads. It makes it a little less scary.
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Just got a call from my onc. CA 27/29 was 203.5 at time of discovery of bone mets. Went down to 156.4 after first cycle of Ibrance and yesterday was 106 after second cycle. She was very excited and feels that I will really benefit from this treatment. Nice to get good news for a change
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That is so exciting! I am happy for you and your family!
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Lynwood, awesome news! So happy for you!Babs, my MO has been on the same train as yours. My tumor markers have been steadily increasing, but she thinks that since this is a hormonal treatment, it takes time to work in some cases. I've been trying to hang in there for the last couple of months, but I hit a wall this past week. I'm in cycle 5 and have had increasing pain. Coupled with the increasing tumor markers, I just can't process it mentally anymore. My MO agreed and ordered scans. I'm having 3 MRIs because Pet scans don't seem to work for me. Had my first last night and 2 more this afternoon. Then, the fun part. Wait for results!
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Lynnwood, so happy for you!! Hope praying for you.....OY! Myra
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Lynnwood, that is really great news! Are you taking Letrozole or Faslodex with the Ibrance?
Hope- I'm so glad you are going to get some answers. As hard as waiting for the results can be, I think it's harder to float along not knowing anything. And you need to get some relief from your pain, whatever the cause. Maybe she'll prescribe something else when she figures out why it's happening. Good luck this afternoon.
And good luck to you, too, Raine-Wells. I hope your side effects are minimal.
Lindalou- What will they give you now that you have that allergy? What a bummer! Good luck with your results and please let us know asap!
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Sandilee, I am taking Letrozole with the Ibrance. Currently on day 10 of 3rd cycle
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So glad it seems to be working so well for you, Lynnwood. Your tumor marker reduction was really fast. That can only be a good thing!
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Sandilee, since I am new to all this, I was wondering if that reduction was fast. I know my onc was very excited when she called me this morning. I will be having a scan at the end of this month and we will see
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thanks for the good wishes Raine-Wells, Myra, and Romansma!!
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my Onc says there is this doctor at UCLA named Finn who is the expert on this drug. Finn says keep the dose as high as possible. My aNC is .9 and my wbc is 2.0. I'm on 100 mgs. He won't lower me unless my anc goes to .5. That's ok with me.
Also, for those of you with really bad pain flares, my Onc says it means the drug is working. Almost makes me wish for pain.... Almost.
Good luck on your scans !!!!
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Sandilee, I now have to take 100mgs of Benedryl two hours before the MRI and then they will also give me a IV Benadryl. I mostly broke out in a rash on my arms and chest and neck. ITCH.....
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Another Ibrance surprise. I called CVS specialty pharmacy to order my Ibrance 100 after being off for a month to let neutropenia diminish...They said "whoops" you needed a prior authorization. Hope to get it soon.cds
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Lindalou,
Sorry to hear about your allergy to the dye, I hope they can figure out what works for you. I had my bone and CT scans today and had a massive headache afterwards and was wiped out for the entire day. Also, they did the wrong CT scan - things didn't seem right since they sent me to a different place and didn't make me drink like they usually do - so I asked them why, and they said it was because they were only scanning the chest, but when I asked them if they were sure I was only supposed to have the chest scan (given that I had more scanned in the past), they found that they had done the wrong scan and that I now need to have it again soon (I had already had the IV taken out, and I don't think they could put in more dye anyway in same day, not anxious to have the dye again).
Morale of the story is "Make sure you question everything - don't be afraid to ask questions!"
Lynnwood, great news, congratulations! Was this your first time treated with letrozole, or had you failed letrozole alone?
Romansma, hope you get some answers from the scans, and especially some answers to pain relief. Praying everyone gets good news on their scans. My doc appointment is not for a week (and now I need another scan), so I doubt I'll get results till then, but the guy who did the scanning said the nurse told him to tell me my blood looked good - though I'm not sure of the details, it is nice to hear something positive (I am still on the 125 dose, just finished 4th round of IBrance/letrozole).
Car2tenn, sorry you have more stress with getting the drug, good luck with the authorization.
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3Holly, I was initially treated with Letrazole 7 years ago when my Cancer was stage 2. Diagnosed with widespread bone mets in April of this year and immediately placed on Letrazole and Ibrance by my onc
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Lynnwood, then it is even more encouraging to know that you are having success on the 2nd try (with the help of Ibrance). Great news! My cancer also started 7 years ago, in 2008, but I was stage 3A (spread to bones/lung and Stage 4 a year ago) I hope you have continued success on the Ibrance.
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Stefajoy, I hope your Onc is right about the pain. He didn't happen to elaborate on why pain would flare on this combo, did he?
I spent almost the entire afternoon in a tube of joy! My one good vein rejected the IV for the second day on a row, so they had to put it in my hand. I have to go get labs tomorrow, so hop they can find a good vein!
Myra, when is your scan? I need to hear some more good news!
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Thanks once again, you guys, for the support. It really does help to know there are others to "talk" to that really understand. I am feeling better now- rebounded well from Round 1. Babs, I totally understand your concerns. I would be thinking the same as you. 3 mos to us is on a different time line than your onc's. When I was on Afinitor for 3 mos while my tumors grew larger, I felt like I had wasted precious time when I could have moved on to something that would work. But, hang in there, the scan was not bad- no new growth is a welcome sign!
Lindalou- sorry about the dye allergy. Do you have an allergy to seafood and shrimp? I have heard that sometimes they go together. I am thinking that the MRIs are bad enough without an allergy! And Holly, it angers me that they did the wrong scan! When I was on Veliparib I had an MRI of my pelvis every 9 weeks to measure a targeted tumor. On one of my scans it was coded wrong and they did my spine and stopped short of my pelvis. I realized they were screwing up and insisted on a pelvic MRI. I made a big stink, but they said it was "too late" and made me go back the next week. From then on, I asked to see the order sheet before getting on the table. You are so right - be careful! No one understands you and your treatment better than yourself.
Lynwood thanks for sharing the good news! It is so encouraging!
Myra, I actually do see a therapist (psychologist) right now together with my DH and it has helped us a lot. I also take an antidepressant and do well with it. I am not falling apart mentally but sh*t, my body is having a melt down! And dealing with pain, as you well know, is a real pain! lol - could not resist that play on words! I do like the idea that it means the Ibrance is doing its job!
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Vivian, so glad you are feeling better. Good idea, thanks, I will ask for the order sheet before any more scans to prevent the redo (especially given that I feel like crap after the dye injection). I haven't heard back from the nurse yet so don't know what caused the error - There is a new computer system now at Dana Farber which has caused some problems and long lines just to check in for bloodwork at 7:30 in the morning. I know they had a big effort to recruit more patients, maybe they can't handle the increase, or it could be they are having difficulty with the new computer system.
Good luck with your labs tomorrow, Romansma.
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Good morning all. I think I slept 10 minutes last night. Scanxiety is in full bloom. Appt 10:15. I don't know why I always have PET scans instead of CTs, but I do. No results until Monday because of holiday, so invited some friends over for the fourth to keep my mind busy. Scared. Myra.
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Ah, Myra, yes, scanxiety. Mine kicked into to turbo gear yesterday. May be tmi, but haven't needed my Lynzess the last couple days! All the what ifs. No one can say we have over active imaginations, though. We've been here before and gotten the worst possible news so it's probably more of a PTSD when it comes to scans. My appointment is not till Tuesday, so unless I figure a way to get my hands on those scans, I have quite a wait in front of me! Some friends invited us up to their lake cabin, so we are going with a group of friends and hopefully a huge dose of distraction.
Hope everyone has fun plans this weekend! I'll be looking forward to seeing the fireworks over the lake while I try to keep my anxiety in check!
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Holly, the wrong scan? At Dana Farber???? Totally unacceptable. Bad enough to do this once, but twice is just plain cruel.
Romans, good luck with firework distractions. The waiting is not an easy thing at all.
and Myra, same to you. Hope you find a way to make the waiting tolerable.
The last few days have been full of fatigue. I am also having some difficulties concentrating and remembering stuff [see how many people I didn't respond to above.] But, I am done with cycle 1!!!!! I am still standing, though on very tender feet. For some reason, this feels like a bigger accomplishment than the last five years of getting Faslodex once a month. I suspect that this is mostly a mental thing.... once a month vs taking every single day. The every single day is a reminder, regardless of how I feel, that I am a "sick" person while a monthly hospital visit meant that I could "pretend" every other day of the month.
Now a 7-day reprieve.
*susan*
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Myra, the anxiety is the WORST!! I am already feeling anxious about the scan that my onc said she will order at the end of the month. My heart pounds and I can't concentrate on anything until I know the results. Romansma, good luck with your appointment on Tuesday! Vivian, you are 100% right that it really helps to be able to talk to people that totally get it. Until it happens to you, you have NO idea of the shock, stress and uncertainty.
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Wishing everyone waiting for scan results a pleasurable, distracting weekend. I totally agree with you, Susan, that getting Faslodex once a month is much easier than this medication every day, if just for the reminder of our illness. So sorry you're so beat, too, and I hope this week off brings your counts and energy back up.
My son and wife and dog are coming for the weekend- down from Davis to us in LA, so I'm really excited to see them. My daughter and BF who live locally are visiting his family out of state, so it's especially nice that son will be down so it's not so lonely and the house isn't so empty.
Scan for me scheduled in two weeks, so I haven't really been stressed about it yet, but I feel for you who are waiting. I also am really looking forward to seeing some positive results from this drug! Crossing my fingers for all of you. {{{... big hugs...}}}
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Getting a CT with yesterday after several years of PET-CTs was so easy and quick I could hardly believe it.
I wish my onc's office would call me with the results of the report, but he told me a scan or two ago that they won't and that I should call them.
Why am I so reluctant to do so? I don't think it's that I fear bad news, because for some odd reason I think I'm okay. It's partly because I don't want to be "that patient," the pest. I also want to be in control and have read the report before I get the news from someone else. Yes, this includes my doctor.
I realize this makes no sense and is nuts, particularly since I won't receive the report from the imaging facility until well into next week, if ever.
I guess I'll call this afternoon.
Sigh,
Temporarily Trepidatious Tina
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Sorry, posted on the wrong thread. Irrelevant content!
Tina
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susan_02143,
I totally get the daily reminder thing! I've been suffering major fatigue as well. My white cell count wasn't horrible (2.6), so I'm continuing with the 125 mg dosage. Looking forward to 7 days off starting on Sunday. I sure hope this drug is working, I have scanxiety and my next scan isn't even scheduled yet! Wishing everyone peaceful thoughts.
Celeste
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Lynwood-great news-thanks for sharing.
Romansa & Myra- I know how hard the waiting is! I now have to wait another 3 months for new scans to see if the 2 new spots on my spine are BC or not! Trying to stay really busy and strong but it isn't easy!
Sandilee-enjoy your visit with your son and daughter in law's visit. That's great that they're coming!!!
Thank you all for being so helpful!!!!
Babs
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MY MO JUST SENT ME SCAN RESULTS! STABLE BONE METS WITH MARKEDLY IMPROVED RIBS AND STERNUM. HAPPY FOURTH OF JULY! 🎉🎊🎉🎊🎉🎊🎉🎊 Myra
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