Ibrance (Palbociclib)
Comments
-
April girl congrats on doing the ibrance dance cycle 28!
Tanya
0 -
My upcoming PET Scan might be at a different location on a different machine, does that make any difference ? Anyone can share any exp
0 -
Finally able to get back in here, frustrated that it makes me log in every time, but doesn't recognize me most times!
Just wanted to let malebreastc know that I've had CA 15-3, CA 125, and CEA done every time I've had blood drawn, for almost 5 years now. None have ever varied more than 5 points, no matter what stage of treatment I've been in - before tumor was removed, before treatment, during treatment, 4-1/2 years in... so my oncologist doesn't use them, we just test them anyway. If one suddenly jumped, I think we'd both be shocked and scared!
Next month, she's doing some new blood test that searches for cancer cells in the blood. It's offered as part of the clinical trial I'm in, so we're getting it done twice, before and after the PET scan in May, since I had that "weird" spot on my spine.
0 -
Ciaci - interesting ! Is it testing for circulating tumor cells ? I am in a study about CTC but just donate a vial of blood along with my other blood tests .
MaleBC - I don't think the machine needs to be the same one . I often have a different tech and a different machine but in the same cancer center (I go to a large cancer center). Things do get mentioned on my petscans that don't necessarily have to do with cancer such as "inflammation noted and assumed to be reflux esophagitis " when I don't feel likeI have reflux or Gerd ? I also have diverticulitis noted once in a while but not every time . My oncologist goes over the results with me in detail .
0 -
Yay AprilGirl! I wanna be just like you
Just started cycle 5
0 -
Ciaci, that's great news that spot is likely benign. I wonder if your test on cancer cells in the blood is something like Guardant 360. I had that test as a liquid biopsy to catch mutations.
April Girl -- add my happy dance to the celebration of your scan results.
MaleBC, I too have my CA15-3 measured, but it's every 3 months when I have my CT scan. My next scan is April 1 -- can I trust the results? Meanwhile I start Ibrance cycle 6 today.
Spring is coming fast where I live. Here's to renewal for us all!
0 -
I’ve just completed cycle 23 of Ibrance (19 at 125, rest 100).
After almost 18 months of no imaging, my CTs from 4 weeks ago show NED. Instead of scans, my MO tracks my TMs. Since dropping to 100 mg, my CA 15-3 has been rising again to 100 (recent low in 50s, highest at 1386). My CEA has suddenly doubled to 13. I don’t know if I need to go back up to 125 mg, but my TMs have been worse, so I’ll wait again for the next labs.
0 -
Aprilgirl1, congratulations. That’s awesome.
MaleBreastC, I don’t think the machine makes a difference.
0 -
A friend in the group gave me hope that Ibrance works well if there is a late recurrence like my case where I have recurrence after 17 years ?
Any morethoughts or experiences ?
0 -
Hi
I was on Ibrance for about 3.5 years and stayed stable. I was dx with liver Mets in 2018. Recurrence after 20 years. I’m currently in the process of new treatments now but Ibrance was good to me.
0 -
I'm back y'all! And I do not like this new format! I've been gone for some time, some of it was vacation and some of it was a break from cancer thinking. I feel like I've missed so much so I'm only going to hit some wave tops below.
April - Congrats on NEAD! HAPPY DANCES abound!!!
Ciaci - I'm so glad it is benign!
MaleBC - My CA 15-3 and CA 27.29 are tracked monthly. When I was dx'd my levels were through the rook: 15-3 was 1600+ and 27.29 was 8200+. I've been in treatment the last 6 months and the levels have dropped by 50% so far.
I had my 6 month scans on 17 Feb and everything seems to either be stable or slightly decreased so yay! I was hoping for more shrinkage but I'll take stable. I just did my tox check for cycle 7 and unfortunately my levels are around 600 so I need an extra week off of Ibrance. Usually my levels rebound really well in the extra week. Thankfully my platelets and hemocrit are good. And I feel pretty good, a few down days from pain and exhaustion here and there. My main complaint is the awful hot flashes and night sweats I am having now. This medical menopause sucks big time!
Thanks everyone!
EDIT: My dx info isn't showing now.... hmmm
0 -
Thanks for response on antidepressant.
0 -
I wanted to thank everyone with my question .I ended up going to the hospital.Jan 24 for two days Had a lacunar stroke. Getting speech therapy. Did not need an antidepressant.
0 -
Lakewoman, I am so sorry you had a lacunar stroke and were hospitalized. Thank you for letting us know you are doing ok. Hopefully, speech therapy is going ok. Were you able to stay on Ibrance during this time?
Katyblu - I was thinking about sending you a PM as we hadn't seen you, so thank you for checking in! Great news on your stable mabel scan results! Your tumor marker drop is great news too. Sorry your anc is low and you need a week off. That happens to most of us from time to time:/
Anntop - good to see you, too and good news on starting cycle 6!
SerenityStat - YAY for NED scan results! Keep an eye on the CEA but NED is great .
b-a-p- Great news on starting cycle 5! You are an inspiration and proof of how great a drug Ibrance can be since it has worked well for you in a short time
kell001 - good to hear from you, sorry you moved on from Ibrance but keep us up to date on how you are doing on new treatment
This new format is still klunky, so it's hard for me to scroll back and look for all the ibrancers. PatMcG, Snowdrop, spookiesmom, Chicagoan, how are you all doin?
I appreciate the messages of congrats on my scan news and am here for anyone who has upcoming scans or meetings with their oncologists.
0 -
PatgMc- How are you doing?
Anyone heard from Snow-drop? She has not logged in to the site in a while.
0 -
Sigh.... so after posting about my TM drops I just got back all of my blood work from this week. My CA 15-3 went from 838 last month to >2000. Needless to say I am freaking out! I've emailed my MO so hopefully I'll hear back soon. I just... don't have words. I know for some TM don't indicate anything but mine seemed to have been echoing my decreased disease activity. So now I am full of anxiety and fear. And of course I am at work so i have to try to hold myself together. Sigh....
0 -
katyblu, I'm sorry about your CA 15-3 jump. I hope it's a fluke. I hope your MO reaches out to you soon.
Yuck, damn, and double-yuck!
Carol
0 -
I’m trying to be here, but this “wonderful “ upgrade makes it hard Spent way too much $$ on my teeth, thanks AIs, Spookie is getting over kennel cough. I have a PET Monday. My usual stuff. I’m not freaking about the scan. Is something lights up, I’ll handle it.
0 -
Katyblu, ugh - so sorry. Hopefully your MO has some good info and like Sunshine99 said, it's a fluke. So stressful, we are all in your pocket - pls keep us posted.
Spookiesmom, I had a typo in your "name" but have corrected it! So sorry. Teeth are worth it but I know can be so expensive if you need implants or a crown. Kennel cough is no fun, either - for you or Spookie. In your pocket for scans and its good you are not freaking out - we have to just roll with it, some days are easier than others for me.
0 -
Katyblu, I’m so sorry you have this worry. My tumor markers work for me too, so I get it. I hope you get clarity soon.
0 -
aprilgirl1, yes, the new blood test is for Circulating Tumor Cells. The way it was described to me, the tumor marker tests search for proteins that indicate cancer activity (mine are completely unreliable, never having gone anywhere near the upper limit of 31/35, even before the primary tumor was removed, and before Ibrance or Letrozole), while the CTC tests for actual cells in the blood that the tumor sloughs off. She said it's sort of like doing a liquid biopsy of the blood, since the "spot" itself is not safely reachable to test. The first draw is scheduled for April 19, then another 4 weeks later. I'll fly up from Florida for the first, and we'll be back in NJ for the season by the second. I'm getting so used to the flight that I'll miss it over the summer!
0 -
Candy-678, I reached out to Snow-drop. She wrote me back and asked me to let everyone know she’s okay and will be back on soon. She’s had some things going on that are not health related.
0 -
I was going to respond to Aprilgirl yesterday saying everything's great but I couldn't log in. Well in a few short hours everything changed. I broke my tibia playing pickleball-I could feel it snap just as I was running after a ball. Now I'm in the hospital awaiting surgery. It's kind of scary-wondering if cancer had moved there even though I just had a bone scan in January. Or it could have just be a stress fracture that finally snapped. If surgery goes well and it is only my tibia, I can put weight on it immediately and possible go home. Otherwise, if my ankle is involved, I won't be able to bear weight and will have to go to rehab. We'll see-I'm trying not to catastrophize and just go with the flow.
It's weird-I've never broken a bone in my life and the only surgery I've had was the removal of my wisdom teeth. Hard to deal with not being able to walk or even move around much in the bed. Surgery's in a few hours-hopefully it will go well.
0 -
KBL- Thanks for letting us know about Snow-drop.
Chicagoan- I posted to you on Mel's Thread, but just wanted to say my prayers are to you today for the surgery. Hoping it is a clean brake and you can go home later today.
0 -
Chicagoan - Ugh ugh ugh ugh ugh. You are out there, playing pickle ball and living your best life, then wham. Grrrrrr. I hope you mend quickly. Hugs.
Candy - Thanks for the update on Snowdrop. I saw a few days back on the liver mets thread that you had a stable liver MRI. Go Lynparza! 😄 I wanted to post back then but couldn’t log on. And now that I’m finally logged into this thread, I dare not navigate elsewhere. This finicky site can go down at any time. I couldn’t get logged in earlier today. This happens to me regularly now. Sigh.
Ciaci - CTC is interesting stuff. Thanks for the laymen’s explanation. Keep us updated.
Katyblu - Hugs. This had to be so disheartening when all other indications were that you are stable. I’m still holding out hope that this is a fluke. Please let us know what your MO has to say.
0 -
Does having P13K mutation mean moving from Ibrance to Piqray straight away ? Or Piqray is added to Ibranch + Fulvestrant ?
Is it a better or worse situation to be in ?
0 -
Malebreastc- Having that mutation means that when Ibrance/Fulvestrant stops working for you (when you have progression) then you also have the option of Piqray as another therapy. I was on Ibrance for 4 years. I had the BRCA mutation, so when I had progression, we changed me to a PARP that targets the BRCA mutation. PI3K is one of the mutations, as is BRCA, that they have a treatment to address that mutation. Gives you another option for a treatment that you would not have if you did not have that mutation.
0 -
Chicagoan, so sorry! We understand your concern but since you had a clear bone scan in January let's all focus on a clean break and not cancer related. In your pocket for a successful surgery and no ankle involvement! Pls let us know how you are doing when you are able to check in.
Candy678- i read on here somewhere that you had recent stable scans so congrats!
KBL - thanks for the update on Snow-drop. Snow-drop, check in when things settle down.
MaleBc - Candy gave you a good explanation. Something I didnt know until I was stage IV is that we can acquire mutations (called somatic ) when the cancer cells are trying to work around our treatment. GAH! This is why if and when we have any progression it's important to try to get a new biopsy (from what I have learned on here)
0 -
Thank you for your support everyone.
My surgery went well. Turns out I had broken both the tibia and fibia so I had a titanium rod inserted. Took some baby steps yesterday. Now my standing blood pressure is pretty low so they are having me hold off on walking for the moment.
My surgeon did not think that the breaks were from cancerous lesions-at least pre-surgery. I hope to talk to him today. Now I am thinking that maybe I did fall first. I thought I fell b/c the bones broke but if both broke, it is probably the opposite.
Hope that everyone has a nice day!
0 -
Chicagoan, I’m glad the surgery went well. I hope you can heal quickly and find out it has no cancer in the bone. I also hope you’re able to get up soon and blood pressure regulates
0
