Ibrance (Palbociclib)
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Happy Easter everyone.
April thanks for keeping this thread alive. I might missed your birthday, happy belated birthday or better saying happy birth month.
Thanks ladies for prayers and thoughts. not much here, still dealing with continuous low energy mode and fatigue.I don’t know why but I like this Year spring more than the last couple of years!
Good to see you here ladies, have a great day, big hugs to all
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aprilgirl, see you next time.
Kbl I'm with you on reading, but then not remembering who said what!
Still doing rads, so off this dance for a little while longer. This fatigue feels very different. I need to schedule in all kinds of vaccines before I start back up. I am told to get shingrix and pneumococcal and boosters and...but next breath is always "in a while, let's get this taken care of first".
Doing a stay-cation with my youngest. Seen two shows so far😁.
Happy spring!
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DanceMom, I get it. Lol.
I have been so extremely busy decluttering and getting my house ready for my daughter, SIL, and grandson to move in.
I cleaned out both bathroom vanities yesterday and literally almost filled a garbage bag. Here is the hilarious thing. I had a maxi pad and a tampon in one drawer. Does that mean I hadn’t cleaned them since my hysterectomy in 2012? Gawd, I hope not, but it sure seems like it.
I am so excited that I’m actually getting rid of stuff. Lightening the load of crap in this house feels so awesome. I’m having a yard sale this weekend. I hate them, but I do have so much to get rid of. I was trying to have it now before we heat up too much, but the forecast says mid 80s. Yuck.
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Hey everyone,
PET scan tmr. I'm a little nervous. I have been having nausea and dizziness the last little bit as well as vomiting. Not sure if it's med related, health related (had a scan last thursday), or liver related. I'm pretty over it. No one knows what it is without the scans. My Liver enzymes have been up and down. I feel like garbage. I'm going to take an antiemetic tmr before the scan so I don't have any delays. I need this done.
Send good vibes please
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b-a-p, I'm sorry you've been feeling so yucky! I hope your scans go well. I don't even know what I mean by "well." Do I mean that they show nothing? Then why the nausea, dizziness and vomiting? Do I hope they show "something?" Not, really, but it would be nice to have a reason for the symptoms - if it were something that were easily fixed. I don't know. I hope you know what I mean. I'm in a bit of a funk today. No reason, really. Just bleh.
Love to all,
Carol
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I too am still here. I had a rough weekend with pain and was just trying to get where I could somehow drag myself in to work today. I have managed. The worst of it for me is my lumbar back area and sciatic nerve. I feel like it all of a sudden Saturday morning took me back to where I was in 2020 when I could barely get around. I definitely feel that these drugs have exaggerated any degerative/arthritic issues in my back. I blame Faslodex for the most severe of the side effects. I know a lot of us experience pain and we have to take pain pretty serous concerning whether it is progression but definitely we need to remember that they can also be "just" side effects of our meds or treatment.
b-a-p - in your pocket for your PET scan tomorrow. Sending good vibes that all goes well tomorrow and that you start feeling better.
kbl - there is something therapeutic about decluttering. It does seem to make us feel better.
snow-drop - I definitely love spring and keep looking for the signs that it is truly here!
dancemom - enjoy your staycation!
Everyone else - I hope you have a great week and feel good enough to enjoy spring!
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B -a-p, sending you good vibes full of patience, calm, and good stuff!
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Thanks everyone
Carol I understand the funk for sure. I often get into them myself. This is awfully tiring. I understand what you mean as well. Not wanting to find something but also kinda wanting an explanation. I get it . I'm only on my 6th cycle so I'm hoping for a lot more longevity out of it. I have to wait until the 27th to hear I believe which is going to be a hard wait. I have a feeling perhaps the cirrhosis isn't getting much better and in that i mean, it's progressing in that way vs the cancer.
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BAP in your pocket for pet scan. I hope the scan is a good one for you.
Sunshine sorry you're in a funk. It's tough with this diagnostic cloud overhead MBC at every turn it's still there. I was gonna try to explain to my husband what it feels like to know that some awful cancer pain is gonna start and then it's gonna be the end. That's too heavy for normal people I think. Just too much.
Spring is showing signs everywhere and that is certainly inspiring.
Cowgal you're absolutely right about what pain could mean as far as TX side effects etc. Faslodex is a doosey for me too. Some ladies used to take clariton I think before their shots. i never did but maybe it could help.
KBL are you still on the trial for faslodex pills? I really want to stop these injections. I have sore lumps all over my rear end that take forever to disappear. the medicine appears to be working so I'll deal with the lumpy butt.
Take care all.
Tanya
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bap, I’m your pocket.
Sunshine and cowgal, I hope things get better for you.
Cowgal, it really feels good when I hate physical labor. With my daughter moving in, I’ll take it because she’s going to do the cooking. Along with hating physical labor, I think I hate cooking worse. I’m so bad at it and so picky. My poor husband may actually be able to eat food with some flavor and not have to try to scrape the burnt-on food from the burner, as well as constantly have to clean the countertop from all my spills. I could make a comedy skit with my cooking skills.
Tanya, I’m on the shots like you, and ouch is right. It’s Wendy in our Zoom group who is on the pill form of Faslodex. I don’t have any side effects from it other than the lumps and bruising.
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Thank you, Tanya and KBL. People here on the BCO, Stage IV forums get it more than anyone else, I think.
Carol
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B-A-P, sending all the good vibes your way and in your pocket for your scan tomorrow. Hoping you get good, compassionate technicians, too.
Oh, the fatigue. I can't explain it properly to people in my life, as they usually say something largely unhelpful like, "take a nap". Thinking of Snowdrop, Serenity, Dancemom, all dealing with fatigue and/or low energy.
KBL, finding the tampon while clearing out stuff made me chuckle. I still have a box of tampons even though no period for me for almost two years now, not sure why I'm keeping it.
Cowgirl, I'm sorry you're in pain, and I hear you about having to drag yourself to work. I'm still working and some days it feels exactly like dragging myself. I hope your pain lessens. I hate pain, and like Tanya, the fear of future pain can scare me sometimes. This dark cloud of MBC can rain all over me some days, and then I feel in a funk. Sunshine, funky blahtown is a place I'd like to not visit again, but I keep going back there. Or I keep getting dragged back there!
I hope and pray for relief for all of us, some respite from the physical and emotional toll this illness takes. Hugs to everyone.
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BAP - In your pocket. I hope you don’t mind but I brought a giant bag of Cheetos to share while we wait. I’m a sucker for crunchy Cheetos. Hugs.
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BAP - in your pocket for the petscan tomorrow, I will bring hershey's kisses to eat after the crunchy Cheetos that RK2020 is sharing while we wait. I am sorry you haven't been feeling well. Sending good vibes your way and hope you start feeling better.
Serenity - I am sorry your medication break didn't help your fatigue. Hope you enjoyed the sun and spring is on it's way!
Rosie24 - so happy to hear that GemCarbo has been pretty easy on you and it's great to see your post.
Cowgal, I am sorry to hear that you had a rough weekend with pain. I hope you start feeling better asap!
Dancemom, enjoy your staycation! So much to do where you live. I had radiation back in 2008 and remember the fatigue. It is different and it's a lot. Hope you are marking off the days and will be done sooner than later.
KBL - it does feel good to declutter and reorganize. You have a great motivator in making room for your daughter, son in law and grandson. So great!
Sunshine99 - I too have been in a funk. No real reason, just feel bleh. I am blaming it on the weather up here in Seattle, it's been colder than normal. Hope that those of us in "funkytown" leave soon!
Snow-drop - I am so looking forward to spring and warmer weather!
Tanya - I agree, the diagnostic cloud over our heads is huge. Only those of us who share this experience really understand. Re Faslodex, I really can't wait for the pills to get approved so we can all stop the injections. Literally, a pain in our rears!
Chicagoan, how is your leg healing? Hope you are getting stronger every day!
SF-Cakes - thank you for the hope and prayers for relief for all of us. We all need a respite (emotional and physical) and I add you to these prayers!
To all,I still can't scroll back easily so I am sorry for missing the names of some of our tribe. I am sending you all hugs and positive energy that we have less pain, clear answers and get out of Funky Town as spring shows us her warmth!
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I’m so sorry for those in a funk. I’m sending you all hugs.
sf-cakes, maybe it’s because those things are so expensive. Do they have an expiration date? The other thing I did was clean out my spice drawer. It was totally full, and it was a pretty big drawer. Was looking as I was pitching. I never use spices. Why the heck did I have so many? The earliest expor date on some of the bottles was 2012. Lol. Yuck.
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Aprilgirl-Thanks for asking about me. My leg is getting better every day. I can walk and drive now and do everything for myself but it has been a very jarring experience. Just one more reminder of how life can turn on a dime. Then I feel guilty when I feel down because I have healed a lot faster than I expected but I feel cut off from my former life, just as I did when I first was diagnosed with cancer. But I went out for lunch on Sunday and am meeting someone today so it's really not too bad, especially given what others are going through. I had to be off Ibrance for a month to allow the leg to heal from surgery. I'm back on it which is a relief because I kept imagining the worst with every ache and pain.
I am following everyone's news and hope that things go well.
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thanks everyone for the pocket duty! My techs were lovely but my oh my it was chilly in there today. rk and April girl , I’ll take all the crunchy cheetos and hersheys kisses ! Yummmm
My brain scan from last week was clear so atleast there is that. Hopefully the PeT will be just as clear.
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BAP congratulations on the cleat brain scan and I’m glad things didn’t go bad today. I’ll be waiting with you for results
KBL thanks for the reminder about Wendy and shots. I was fine for awhile but now I dread the bloodwork and shots. I always dreaded blood work. I was trying to be a good girlscout with shots but…. Cumulative is not the same as beginning
Take care all it was really nice hearing from everyone.
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Tanya, I’m sorry you have a rough time with bloodwork. I will be in your pocket for Faslodex and bloodwork next time. My next appointment is May 2nd, three years and one day since finally being diagnosed. I’m so glad to still be here. Hope to see you again next Monday.
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Hi! I was just starting to wonder does ibrance seem to work with invasive lobular bc? This is still a drug my oncologist may put me on. I know it is oral chemo. Back when initially diagnosed I did adriamycin and taxol. I remember years later a different oncologist told me I should have never done chemo. He told me I should have just been put on hormone blocker. He said chemos don’t work on lobular. So that stuck in the back of my head and I am just curious who has lobular and has success with ibrance? Is it something you can get tested for to see if it will work? Or if your cells are sensitive to it?
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Dear Anne16,
Ibrance is not a chemo drug -- it's what is known as a targeted drug. They are not the same thing.
I have lobular breast cancer, and years ago I was treated with TAC chemo. I went into remission for many years. I think the wisdom is that chemo is not the best for lobular.
I was also on Ibrance, along with fulvestrant, upon recurrence in 2019. It worked for me for about a year and a half, perhaps a little bit longer.
You may want to do a bit of reading on Ibrance, and the other CDK 4/6 targeted drugs to find out more about it.
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Hi, everyone:
I'll catch up more later, but send my support and love to you all. The day before our trip to Italy (April 6-15), I got my CT scan results -- they were still NEAD. That made for a far happier trip -- our first since COVID started. We were in northern Italy -- I think this poster from a cafe in Turin sums up how some of us feel. It was great to spend some days not thinking too much about MBC and sticking to my regular strict diet and supplement regimen. We ate, drank, and made merry instead.
Ann
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thanks bevjen! What are you on now?
Ann, how fun to go to Italy! And what a great place to celebrate a NEAD scan! Love the poster!
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Dear Anne16,
When I recurred in 2019, I went onto Ibrance and fulvestrant. But I had been on letrozole from 2006 until 2019, with nothing going on -- completely NEAD. Next up after Ibrance/fulvestrant was keytruda (but only because I have so many mutations in my cancer -- but didn't work for me). After that, I went on xeloda and neratinib -- worked fine but I couldn't handle xeloda even at a very reduced dose. Currently on neratinib and fulvestrant because I have two ERRB2 mutations. Scans reading stable right now.
I also have a PIK3 mutation, so I could try piqray. My doc has also talked about Verzenio with one of the AIs.
You might talk with your doc about neratinib. My regular doc and my consultant doc both thought it was a good one to try, and it seems to be holding me right now. Xeloda is chemo in a pill form, but a lot of docs still like to use it, even with lobular. If you have any way to access a doc who knows anything about lobular, it would be worth your while to get a second opinion because most docs don't know that much about lobular.
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Anntop, Congrats on NEAD! Italy sounds wonderful. We went years ago and had so much fun. We’ve been talking about going back now that Covid is winding down. Hopefully we’ll get there this year.
Enjoy
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My primary care dr called about my pet today and there’s likely a chance I’ve gone from NeD to two bone Mets. There was also mild uptake in the right lung but no nodule.
It says
Along the superior endplate of L1, there is slightly increased focal low-grade
FDG uptake/SUV max 4.8 along the superior endplate, which is new in comparison
to the previous PET study. There is suggestion for very mild endplate depression
at this level (series 611 b, image 63). No definite underlying osseous lesion is noted.
Within the thorax, there is a focus of low-grade FDG uptake/SUV max 3.8 by the
left transverse process of T6. There is slight loss of the cortical lining
anteriorly (series 4, image 97), which is more conspicuous today in comparison to the previous study.
And
Within the right upper lung, there is a focus of nonspecific low-grade FDG
uptake/SUV max 2.5, which is of unknown significance, as there is no
corresponding pulmonary nodule at this level (series 1300, image 8)
My GP said it’s reassuring there’s no obvious tumours , nodules or lesions . But I honestly don’t know what to make of it. Have a failed ibrance so quickly after becoming NeD ?
Oh also you note it’s mentioned a gallstone so perhaps where the vomiting and increased liver enzymes have come from.
Can anyone make sense of this?
I have to wait a week to see my MO as she is on vacation.
My mind is effed. Basically being told it’s not necessarily bad but it suggests MRIs to look further . Except the lung should be checked in 3 months.
Sigh
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Hi B-A-P, I am sorry that your scans had a few things pop up. I really miss Cure-ious! She was so helpful with her science background when we have these situations. I am not a doctor and don't have bone mets but it is good news for you that your organs look clear. Also, I would say the FDG levels are fairly low when I think back to my first stage IV pet scan and the FDG levels. How is your nausea now? I do think it's great that there are no obvious tumors and I am still amazed at how well your Liver responded to Ibrance and your Liver is still clear.
AnnTops - congrats on NEAD! Italy is a fantastic trip to celebrate your scan results! Enjoy:)
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Thanks Aprilgirl. It’s possible there’s something going on in my lung but the uptake is low at 2.5 so I think they will leave it until my next three month scan. As for my liver , they are still recommending mri as it is so scarred they are worried Mets might’ve been covered by it. But it appears on the outside that the liver is shrinking (it’s been enlarged) and the portal and hepatic veins are now open. I had varicies banded a few weeks ago but this scan is showing there’s some low down that she missed but I assume there’s no access there with the endoscopy.
So with the bones I wonder if it’s an early catch or osteopenic issues. It all seems mild. I guess the scary part is that it wasn’t there three months ago. Also the ALP has been rising but the fact I have liver issues kinda skews whether or not it’s a bone thing or liver. But I know rising ALP could be either
Does this mean I have to move on from ibrance ?
As for the nausea , I had a bad bout over the weekend. My scan also showed a gallstone so I assume that is the cause right there especially as I had a greasy meal the night before (which I don’t do often
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BAP - I wish I had better insight to offer. And the waiting blows. The fact that the SUV levels are low might mean a wait and see next scan results. But since it is in more then one area, your MO might want to switch up meds. If I had to venture a guess, as long as your MRI comes back with good results, I think this is a minor stumbling block that you can overcome. Until you meet next week, think about what would make YOU most comfortable -switching things up completely, tweaking your current lineor staying the course? Something as simple as switching to a SERD (Fulvestrant) may be just what you need to be NED/NEAD again. Although I will never know for sure, I think that Fulvestrant did more for me then Ibrance. Hang in there and keep us updated. Hugs.
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i wonder if verzenio would be helpful or are those inhibitors out bc I have been in ibrance ?
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