Ibrance (Palbociclib)
Comments
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Great news Patty!!! Praying that you have a happy and HEALTHY holiday.
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Nina, My mo says CT is the best way to see liver mets, but not so good for bone mets. Wish I could just have MRIs, no radiation to worry about. I think with bone mets it is hard to tell active sites from healing sites with MRI or CT.
Yea Patty! Get out and stay out!
Babs, From what I read here, TMs do funny things on Ibrance. Try not to worry. Easier said, I know.
Masonsma, I'm sorry to disagree with your mo, but my April scan showed many active areas on PET that were mostly gone on my July scan, 3 months after changing to Faslodex. I agree with others that you should insist on some kind of scan every 3 to 4 months unless you are NED. If mo does not agree, time for a different mo IMO. My CA15-3 TM has always been in the normal range, so for some, TMs aren't good indicators.
Artist, I went back a page, but can't see where or why you are not on any tx right now. Sorry for my poor memory, are you at least still on Femara? That can still work well by itself without the Ibrance chaser. Hopefully your insurance will pay if that scan bill is resubmitted with another code. Maybe question your clinic as to why it was not properly preapproved.
Happy Birthday Jazzy, whenever it is! Yup, they're all good now.
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Still haven't gotten my CA27-29 results from yesterday, but just logged onto my chart and see that my Alk Phos dropped from 356 last month (after a very concerning high of 444 two months ago) to 239! Hoping that's a good sign!!! Also just noticed that my Creatine levels are up a bit, which isn't surprising because Ibrance seems like such a harsh drug to me.
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Hi everyone! I've been lurking for a couple of weeks, but now wanted to reach out. I have MBC that currently shows NED. However, my mom is also Stage IV, but she keeps progressing. She failed Femara, went on Affinitor and Aromisin, which really got her down in terms of side effects. Her latest PET shows her lung tumor growing and new spots on her liver. She has numerous bone mets, but those are stable.
Her next set of treatments will be Ibrance and Fasoldex. I pray this is her miracle drug. She is only 67, but feels like she's 87. I think I'm in a little shock...Thank you for letting me reach out!
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Jobur, they stopped Ibrance first because my Liver enzymes were elevated and it seemed to coincide with the off week. After a week or so of being off they continued to go up pretty high so she took me off of Femara now to see if that makes them go down. In the meantime I have a liver specialist doing another battery of blood tests but so far no answers.....I am very nervous as he said if it is the Femara then that excludes anything else in that class for me. Yah Patty! I hope you have a wonderful Christmas at home!
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Cafelovr, congrats on your NED status! Sorry things have not been going as well for your mom. I'm on the Fas/Ibrance combo and have had good results, hoping this will be the tx that will turn things around for her too.
Artist, thanks for the (re)explanation. Hope you get some answers soon and that letrezole isn't the culprit. There are other tx's, but I can see why you are nervous about losing the AIs as options. I wonder if that would include Faslodex as well as it has a different mechanism than the others. Just a thought. When do you get your liver enzymes tested again?
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Deana - So glad to hear that your ALK numbers have dropped so much! That's fantastic and welcome news, I'm sure. Seems like that should be a good indicator. My ALK finally dropped the last time, and I ended up with a good scan. Watching these numbers can be nerve-wracking, can't it?
Cafelovr - Hope Ibrance works well for your mom. So glad to hear you are NED.
Patty - Happy Discharge!
Babs - So glad to hear from you here! Hope those TM's make a turnaround.
Dune - I hope that the sweating side effect improves for you.
Artist - I second what Deana said about the scan. This would be your provider's responsibility to get pre-approved. Also, when I was diagnosed Stage IV this summer, the onc office scheduled a PET and told me they would like to get a second PET in three months. They said it was getting harder to get approvals, however, and not to be upset if they had to do another type of scan instead. So I do think a lot of it is insurance driven. Hope it gets straightened out for you.
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My alk phos has also gone WAY down on Ibrance from 444 down to 93 in 8 months. Tumor markers 203 down to 56.5. Scans good! Holding steady! Wish this for us all!
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Great news Patty !!! Happy Birthday Jazzy!!! Make the most out of your special day!
I went off Ibrance/Femara on October 5 . I was on nothing for 3 weeks until I started GDC0810 on 10/29 (a clinical trial) In the 3 weeks that I was on nothing, my TM's (CA15-3) went up 20 points which was the biggest jump ever (and usually my TM's were taken every 4 weeks). I started the GDC 0810 and had my next TM test on November 24th at which time my TM doubled (went up over 100+ points) Next TM test is 12/22 and scans are 12/28. I am worried and concerned but I know it's the scans that really are key.
Trying ti stay calm
Babs
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I went to MO yesterday. I am in the middle of my second cycle of Ibrance. TM went from 45 to 60- and Alk Phos stayed the same as last month at 174. I have ct scan on the 16th to see if there is progression, he already mentioned Xeloda to me. In the interim, I have been doing rads to 3 areas and yesterday I had the xgeva shot. I have not gotten out of bed yet today.
I really felt a let down to know that the TM went up but MO at Dana said the only thing she watches is cat scan.
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Loves, my TMs went up every month for 6 months before they stablized on Ibrance. First scan during that time showed no progression. Second showed one met getting a little bigger, but no added mets. ONC has been mentioning Xeloda as the next step for the last four months, but I'm still hanging in there on Ibrance. 8 cycles now.
Just love all the uncertainty.......not!
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Stephjoy- That is encouraging!! Thanks for sharing! Don't you sometimes just think you have had a bad dream and can't wake up from it? After 18 years I didn't even really think about it BC anymore- Thank God we have this group, it is a true blessing to have someone see a post and give you encouragement. Thanks.
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LovesM, my UCLA onc was pleased when my TMs went down even slightly my 2nd month on Ibrance. She commented that it's not unusual for TMs to rise for several months before finally starting to go down.
Babs, let's just hope & pray that the trial drug you're on now might have a similar thing going on -- TMs up at first before turning around. Is it also a targeted therapy? If so, maybe it's just the way they work -- preventing the formation of new bc cells, but not stopping the ones that already exist, which will die out eventually. (Not a scientific explanation by any means -- just the way I picture that possibly happening!)
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DLB
I hope you're right! It is a targeted therapy. While on the Ibrance/Femara my TMs went up monthly but always less than 10 points. My first set of scans at 3 months was stable but my second set of scans st 7 months showed mets to bones and liver. TM going up over 100 pts is really scary!!!I I find staying positive isn't so easy! But I'm trying!!!
Babs
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Just a repeat post for newcomers if you are concerned that your tumor markers don't drop right away. Found this info on Oncolink that indicates that up to 30% of us will still have elevated markers for 30-90 days after a particular treatment--even if the treatment is being effective.
Although tumor markers are not reliable for all of us and some oncs don't used them, if they are reliable for you, you may fall into the "delayed" 30% mentioned in this info. Both CA 15-3 and CA 27.29 tests can be delayed in showing a drop.
Scroll down to the particular test your onc uses to see.
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Thanks Moissy ! The support here is so amazing. Hugs and Squeezes to all.
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Just popping in to share something that happened to me this month that might be helpful. Until now, I haven't had the mouth sores that many complain about while on Ibrance. But I finally got one yesterday (day 26 of my 4th cycle), and the only thing I can think of that's different is that about a week ago I ran out of an immune building supplement I've taken for several years that contains zinc, a bit of copper, pumpkin seed extract, and two or three other Asian-sounding extracts. It's something I buy from a friend (not available in stores... from a direct selling company w/which I have no affiliation)... and I'm not even recommending it specifically, because I'm thinking any natural zinc supplement would probably work. But it's the only thing that's really different this month.
Anyway, just thought I'd share while it's on my mind tonight, hoping it might be helpful for those dealing with mouth sores from Ibrance.
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Jobur, Onc said Faslodex would be my next Tx if i have to stop my current. I get the enzymes tested again Monday and there is still one test out that the Liver specialist hasn't gotten back yet. I am anxious to get on some sort of treatment so I don't lose the ground I gained. Cafe, that is fantastic! Long may you be NED! Moissy, yes I plan to ask them this at my next appt. Isn't almost EVERYTHING insurance driven?? Sad.....Yah Lynnwood! More good news! Best wishes Babs and Loves, the nerves rarely get a rest it seems. Hope you are feeling better enough to get out of bed Loves. That is encouraging Steph! The bad dream thing does happen to me and sometimes waking up in the morning is the worst, especially if I am alone on the weekdays. (Otherwise, on the weekends my DH does not give me much time to mope.)
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artist, good luck tomorrow. I'm thinking of you and hoping you get good liver enzyme results so you can get back on track.
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Thanks so much Hummingbird! I think always in the back of our minds is "What if the worst case scenario is here"? But I am really trying hard to practice calm and optimism, trust in my doctors and just research all I can, eat well, rest ect. It does not help me to let the anxiety rule. I hope you and your Mom are doing well and getting some Holiday spirit into your lives. I am going to a huge Nutcracker performance today and hope it is a good one and helps to uplift my spirits as well.
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artist, that's a great idea! I'm sure you will enjoy the performance and get in the Holiday spirit! I have been decorating, shopping, meeting up with friends...
My Mom finally has begun an antihormonal treatment for MBC. Her biopsies showed breast cancer (metastatic) and NOT lymphoma which was also suspected originally. So we will support each other through this crazy disease. Glad I know a lot and can help her. She's at the point that much of what her oncologist says just goes right over her head. I think it's her way of dealing with it. Thanks for thinking of her.
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Hummingbird, I am glad to hear there is no lymphoma on top of everything else. I hope your Mom can comfort and support you some as well as it is hard enough coping with your own stuff. Thank goodness for friends and family! The Nutcracker was very nice and when I got home the tree was up and lit which was nice. Take care!
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Glad your Mother has started tx, Hummingbird! I hope and pray it will work quickly and for a very long time!
Linda, I hope Faslodex+Ibrance will be a miracle combo for your Mom! Gosh, I can't believe that you and Hummingbird are in the same situation! Not the kind of Mother-Daughter stuff anyone ever imagines going through! Sending you both extra prayers for strength!
artist, good luck with your liver test tomorrow! I'll be thinking of you and hoping everything looks much better!
I don't know what made me check my on-line lab results tonight (labs were on Thursday after 4 cycles of Faslodex+Ibrance), but I was so happy I did! CA27-29 is at 218 (down from 263 last month); and CEA is at 5.2 (12.5 when I switched to this tx regimen). I've been concerned because I started having some increased rib discomfort in the past week or so, but now I'm hoping maybe it's just tumor flares from my most recent Faslodex shots.
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dlb, that is very good news that your markers declined! Happy to hear that! And thank you very much for the extra prayers!
Linda J, just read your post. I had missed it. Unbelievable that we are both going through this Mother-Daughter MBC. I wish you and your Mom a good long success on your treatments. Sending hugs and prayers.
artist, thinking of you. Good luck today!
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Oh, Hummingbird! That's just awful! I think being a caretaker is a lot harder than being a patient!
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Had severe fatigue and very low WBC count even on the 100 mg dose. My onc gave me a week off before my third cycle and then restarted at 75mg. I'm on the third week of my third cycle and am having severe bone pain and vomiting. Anyone else having vomiting problems? I'm trying to keep up nutrition with ensure, but it's a challenge.
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Hummingbird - Hope things are going ok with your mom and you.
Deana - So glad to hear about your markers. That's great!
Babs - Hope your new treatment kicks in with good results appearing soon!
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Thanks Deana, The last test for an auto immune disorder was negative so he thinks it is probably the meds. My Onc was supposed to call with enzyme numbers today but still waiting.....I hope that is just a tumor flare too. I had some rib discomfort this week too but today it is gone so who knows.....
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Hawks - I had similar issues with the Ibrance at the two higher doses, so I had to start taking omeprozole each morning on an empty stomach. And now on the 75 mg dose I've had no nausea or vomiting. Thank God! I see my onc on Thursday to see what my WBC is. Hope that is helpful.
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Hello, Ibrancelanders. I'm just jumping back in after some time off the computer. As in the rest of my life, I'm not keeping up! At least I caught up on reading everyone's news today, if not on responding. Good wishes to all of us.
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