Ibrance (Palbociclib)
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Sunshine99 My oncologist didn't seem to think the tree in bud is anything to be concerned about. The PA didn't either. I want to have knee surgery as soon as it I'd safe from the orthopedics point of view, since I am NED. I have asked the oncologist and PA about anesthesia and they said it is not an issue. I have a friend who is an anesthetist and I am going to ask her for her opinion. I hate doing that but I feel like my doctors don't think it is of any concern. I want to be sure. Of course I don't have any other symptoms either like you do. I have been told I don't need anymore scans studies etc. until I have symptoms since I was NED on my last scan which is where they found the tree in bud. I start with a new oncologist next month. I sure hope they figure it out for you really soon.
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Hello all
welcome Rose it’s nice to see you here.
I’ve been on Ibrance since 2017 with faslodex injections monthly and zometa every 3 months. I get scanned every 6 months. In the beginning it was every three months. I do know one ibrance patient who scans yearly.
take care all
Tanya
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Sunshine99. How did all your testing go? Any news?
My husband has his MRI for his sudden hearing loss and I have no idea what it says. Hopefully when the Dr calls him and explains it he will understand.
My neutrophils did not come up again this month. I will need two weeks off. Wondering if my Dr will be willing to try an alternate dosing schedule. I get mouth sores 2 days after my last does. I feel like at the end of the 3 week mark I might have stage 4 neutropenia which it is why it is slow to come back up. Yesterday test I was stage 3.
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brutersmom, thanks for checking on me. I communicated with the GI doc and at 10:45 LAST NIGHT he messaged me about the results. Apparently, they were bad enough to warrant seeing another GI doc for another test. They wanted to do it tomorrow, but I can't work that into my schedule. He only does these on Wednesdays so I'll have it done next Wednesday. It's a honking long test name, which I will copy and paste below. At least I'll be out for this one. My original for that same day was cancelled. It's almost the same procedure but this one includes an ultrasound. Yay! More fun!
ESOPHAGOGASTRODUODENOSCOPY, FLEXIBLE, TRANSORAL; WITH TRANSENDOSCOPICULTRASOUND-GUIDED INTRAMURAL OR TRANSMURAL FINE NEEDLEASPIRATION/BIOPSY(S) (INCLUDES ENDOSCOPIC ULTRASOUND EXAMINATION OFTHE ESO
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Sunshine99 Wow that is a mouthful. I hope you get to the bottom of this issue with that test.
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Hi all, I just tested positive for Covid. Has anyone had Covid while on Ibrance and how was it handled? Did you pause Ibrance, take paxlovid, how long did it take to get over the virus? Ibrance typically beats my ANC up but this is the first time I've gotten sick since starting it. I'm having chills, body aches, fever and a minor cough. I plan to get in touch with my MO's office tomorrow but was hoping for some feedback. Thanks!
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Mc22 - I had a mild case of Covid in April 2023. I called my oncologist office to report it and they advised me to stay on ibrance. i did not have a fever, my symptoms were like a mild cold with congestion. Hope you feel better soon !
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Aprilgirl1, thank you for responding. I’m hoping it doesn’t last too long.
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Mc22-I had Covid a few years ago. It was no big deal but my oncologist advised me to go off Ibrance until I tested negative.
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Mc22 feel better soon.
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Chicagoan, thank you for the info. I’m wondering if fever affects how Covid is addressed.
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Dear chicagoan
Thank you very much. I've held on so far despite my harsh impact on my joints, especially my knees.
I wish you well too. Did I see that you stopped Arimidex due to side effects?? Or am I looking at the wrong profile?
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Rosebeessie. You might be thinking of my profile. What would you like to know?
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Just a little update. My oncologist advised me to stop Ibrance while I have Covid. Fever seems to be gone today so hopefully that’s a good sign.
brutersmom, thank you for the well wishes
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Hello everyone. This thread gives me a little hope seeing how many people have been on Ibrance so long.
I am a newbie. I made it to day 12 on my first round with zero side effects until the fever hit. I couldn't pinpoint any infection because there were no other symptoms. I've been taken off Ibrance after day 15 due to low ANC (1.17) and have had two injections of Neupogen, but I think I read somewhere this isn't a good mix with Ibrance. Also, I am afraid the MO will want to change my treatment already without really giving this a chance.
Has anyone else experienced low neutrophil issues from the get-go? Did you continue with the same treatment?
Also, I've read some ideas on here of two weeks off and one on and was wondering if anyone has any other information on this. I haven't done any research yet, but figured I'd ask here first.
Thanks for contributing to this thread. Like I said, it has really changed things for me.
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Hello dulcea, I took 125mg of Ibrance for 21 days, then ended up in the hospital due to neutropenic fever, white blood cell count below 1, platelets around 35... they started me on iv antibiotics just in case. I was upset because I assumed that meant I couldn't continue on Ibrance. My MO said the efficacy of Ibrance all depends on if one's body responds to it or not, and I clearly had a response! I've been on 75mg Ibrance ever since, and am on cycle 34 right now.
Talk with your doc about dose reduction, some of us simply can't handle the highest dose.
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Delcea. I am sorry you are here but this is the place to come for questions about Ibrance. I would trade you for a score of 1.12 after 15 days the first month. I was .7. At day 15 and had to stop for a week and get retested. After 1 week I was up to 1.12. They were concerned I would drop below .5 if I started to soon. I had to take a second week off and then start again. I did not get a fever. I started at 125 mg. After that I went to 100mg. I lasted on that one for 3 months. Now I am at 75mg. My blood test after a week off is about .96. They will no longer allow me to restart a cycle until I hit 1.5 or above because of how low I go. Other then that and fatigue I do well. After 6 months have been no evidence of disease. I have been on Ibrance since January 2003.
I have done some research on alternative dosing. We have talked about 3 weeks on two weeks off. I don't like 2 weeks off because letrozole is a big issue for me. I take effexor to control some nasty side effects. Right now pfizer is doing studies on alternative dosing. So far they are studying 5 days on 2/3 days off or 2 weeks on 1 week off both seem to be working for neutrophil issues.
The next step your Dr should try is reducing your dose. All of the cdk4/6 drugs, reduce neutrophils. You don't know if the fever is from a virus, infection, or Ibrance right now. See how you feel in a day or two or and see if you get more symptoms of a cold or flu. I know nothing about neupogen but I was told that none of the meds used with chemo therapy or radiation really work for cdk4/6, when I asked. Hope this helps and I hope your fever is gone. Hopefully some of the others here will comment. This group has really helped me a lot over this journey.
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@sf-cakes, that is great that you have found your balance with Ibrance. I am very sensitive to a lot of medications so I guess I can add this to that list. So it’s good that I’ve responded to Ibrance this way? My MO did mention reducing the dose, among other things, but said she didn’t really want to do that for me.
@brutersmom, I feel comforted knowing other people had difficulties with Ibrance right out of the gate. I misquoted my lab results. My ANC was 1.15 and then two days later it was .44. Thus, the phone call at midnight a few nights ago. I was told that if my fever reached 100.4 I had to head to the hospital.
That is amazing that you have been on Ibrance for so long with great success! I was wondering if that was a typo! 20 years is truly amazing!
Do you take the letrozole when not taking the Ibrance? Be thankful you don’t know what Neupogen is. You may know that it stimulates the growth of white blood cells, but it causes a lot of fatigue. I just want to lie in bed all day. It takes me so long to accomplish anything at all. At least I haven’t experienced the bone pain that is also a side effect (knock on wood). Are you saying that the white blood cell boosters don’t work?
The high fever subsided after two days but remained in the 99-100s for another 5 days. Yesterday was my first day without any temperature at all. Maybe it was because I stopped the Ibrance two days ago.
I was feeling pretty good on the Ibrance but now I’m a little discouraged. I’m sure we’ll figure out a good balance for me and hope it doesn’t include fatigue. Wishful thinking.
Thanks for responding ladies.
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Dulcea. I am not sure where you saw 20 years. I am only 10 months. I suspect I have been below .5 because I always feel like crap the last few days of ibrance and the beginning of the week off. Maybe if they over your dose you won't get the fever. Hope you drs can get things under control for you. Remember to be your own advocate.
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Sunshine99 we haven't heard from you in a while. How did your test go? Are you doing OK.
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I'm waiting on the biopsy results from the procedure last week. I don't remember where I posted, but I had a seizure last week, am now on anti-seizure meds, and the neuro doc ordered a stat MRI. I showed up for the MRI, but the equipment was down and the woman behind the desk (who appeared not to care) told me the next available appt was December 17! I'll call scheduling when they open at 8 this morning.
Hope everyone is doing OK this morning.
Carol
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Wow sunshine99 the seizure must have been scary. Hope you got your appointment. Rthis morning. Keep use posted. If central scheduling can't get you a stat MRI I hope your Dr. can.
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Carol (Sunshine99) I am so sorry to hear you had a seizure AND the scheduled mri was canceled :/ In your pocket for the biopsy results and an mri stat . Pls keep us posted , ok ?
brutersmom , thanks for checking on our Sunshine99!
MC22 - hope you are feeling better and recovering from Covid .
Dulcea , I'm so glad SFCakes saw your post and shared her experience . I, too struggled with low anc , dropped as low as .6 at times but never spiked a fever . I had 2 dose reductions in my first year on Ibrance and settled at 75 mg. I rarely go below .80 and my oncologist allows me to start the next cycle of Ibrance if my anc is .80 or above on day 28 when I have a blood test and receive my fulvestrant injections .
4 years officially mbc today (first faslodex injections on 11/13/19) 3.3 years with clear scans (no evidence of active disease picked up on scans ). Thank you all for sharing your experiences on here - it really helps me not feel so alone on this journey.
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Congrats on 4 years Aprilgirl. May you have many more good years.
Sunshine-So frustrating! Hope you can get an MRI soon.
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Aprilgirl two questions for you and sorry if you answered them somewhere else. Does your MO do tumor markers and use them to determine when you have scans?
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@Aprilgirl1, congrats on hitting that milestone! That is amazing. It sounds like you have found the perfect treatment for you. Do you have any other side effects from the Ibrance?
Has anyone had wonky liver labs after starting Ibrance? If so, what was the treatment, if any?
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@Brutersmom - my oncologist ( at Fred Hutchinson Cancer Ctr in Seattle ) does not follow cancer markers for me . As part of my monthly blood draws to check my neutrophils for Ibrance the CEA (carcinoembryonic antigen test) is run as well as CA15.3 . These have never been elevated, even when I was dx stage 4 and not on treatment. My oncologists (I've now had 3) have all told me they don't make decisions based on these . I'm also enrolled in a study at Fred Hutch, www.kevincheunglab.org which is studying circulating tumor cells so they may be using these blood tests ?
I don't think that it's a good idea to not have scans / surveillance when we have stage 3 or stage 4. At minimum this early in your stage 4 journey I would want scans every 6 months. We need to catch any changes as soon as possible to prevent significant spread of disease . I'm stage 4 and have never had elevated tumor markers so how far would it have to spread to show up in tumor markers ? Same with symptoms - many women don't have overt symptoms .
Plus , on Ibrance they should check your anc every month- especially since you've had low anc levels . I don't see my oncologist monthly but have a blood test when I get my faslodex shots.
if you've been NEAD for an extended time (5 years or more ) I could see annual scans . I'm now at scans every 4 months and that is when I see my oncologist .
Id look for a second opinion, your doctor's plan does not sound like standard of care - if there is standard of care in the US for stage 4 / ogliomet surveillance .
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Thank you, everyone for the encouragement. I spoke with the scheduler today and she nabbed a spot for the Monday after Thanksgiving. She said she would keep looking for an earlier one. She called me back and I have an appointment for the Sunday before Thanksgiving. It's at the same location where the equipment went down, so hopefully there will be no problems this time.
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Sunshine99 - that still seems too far away but I guess it's only 6 days ? Keep us posted . When do you get your biopsy results ?
Dulcea, I've had very few side effects on this treatment which I am thankful about . I have definitely lost hair , at least 30-50% and my hair is no longer wavy, which is weird ! I had fatigue in the beginning but was fatigued from the cancerous nodes pressing on my larynx and laryngeal nerve so that started to go away within 2 weeks of starting ibrance and fulvestrant .
I have not heard of elevated liver enzymes from Ibrance but it could happen I guess ? The low anc / white blood count is the most common side effect that creates problems.
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