Ibrance (Palbociclib)

Hi All!

@brutersmom I am so thankful that you feel better on fulvestrant! I have to say, I have less side effects on fulvestrant injections compared to the years I was on femara (gave me joint pain).

@chicagoan Awesome news that you are still doing great on Ibrance and letrozole!

Last time I posted on here I think I mentioned I have a spot lighting up on scans that my onc. kept wanting to "watch" as it was under 1 cm and not in a good place to biopsy (on my rt adrenal gland). After 3 scans showed the SUV getting brighter but the size not growing, she still wanted to "watch" it so I decided to get a second opinion at UCSF while I waited for my December scans (I had a trip to SF for a family wedding already on the calendar in November). Meanwhile, my Fred Hutchinson onc. also ordered a tempus blood biopsy which showed ZERO tumor mutations and no info - which I guess is good? Another reason I wanted the second opinion is that my onc. left on maternity leave 11/1 and will be back in February of 2025 so I have an interim onc. at Fred Hutchinson.

UCSF appt was great (11/22/24). She advised switching me to Kisqali, depending on my 12/5/24 scan results. She agrees that it doesn't make sense to biopsy this spot. Fantastic write up for support for why she would switch me to Kisqali. Dr Michelle Melisko, UCSF - if anyone wants to get a second opinion or is in Calif!

12/5 scans show the spot is now 1.2 cm, needs to be over 1 cm for Fred Hutch to consider it progression. Also, a hilar lymph node is starting to show SUV. Something is brewing! I just had a telemed with my interim onc. and she wants to switch me to Kisqali. The dilemma is should I stay on Fulvestrant or pivot to arimidex for the hormone treatment? UCSF doc recommended staying on Fulvestrant at first and see if the change from Ibrance to Kisqali makes a difference. Interim oncologist agrees. I think I should change the cdk 4/6 and can monitor side effects in lieu of changing both. Plus, I tolerate the injections really well.

Otherwise, everything is good! I had a record year in selling homes. The late US Thanksgiving date has really thrown my holiday "planning" into a warp speed;) I feel good and am happy with this new plan.

Hope everyone is doing well and appreciate all of you! This thread is my "home" as I've been on Ibrance/fulvestrant for 5 years. Hopefully you are ok if I still check in on the Ibrancers. I am beyond thankful for these medications.

Chicagoan & April so pleased to hear that you are both doing well & hopefully the change of meds will halt any progression April. After my 7.5 years on I/L the last 9 months for me have been on Orserdu only. I have a number of mutations including ESR1 so it’s a good choice for me and so easy. My blood work is perfect. I have scans on 6th January so we will see if it has worked.

I enjoyed my Ibrance days and was very grateful to have had the opportunity to be on it.

Good luck everyone and enjoy the holidays and let’s hope 2025 is kind to us all. xxx

Malebreastcancer congratulations on 20 years. That is great. I hope your journey continues for 20 more. Spending time trying to get ready for the holidays. Not many days left. Tomorrow starts the parties. This year they are all squeezed into 2 days LOL. After the new year comes my 2 year anniversary or my mets. Not sure how I feel about it. I do know that I somehow managed to schedule an oncology follow up for that day. Hope everyone has a great week.

@brutersmom hallo there. I must say a big thank you for keeping this group going even in the face of silence. Sadly, being patients of a very demanding illness, sometimes the side effects are so overwhelming that simple text communication becomes a challenge. But, here I am after a long series of side effects that at times made me ask myself "What's the point 🥲🥲??" I've had continuous upset stomach which I put down to gut imbalance. So I tried to include Natural yoghurt and it was helping, but the sadly, I also discovered the primary protein in dairy casein causes joint pain and inflammation. Casein acts like an excitotoxin.  And then there's our arimidex. Joint and muscle pain are common side effects of Arimidex, affecting almost half of women taking it. Pain can occur in the hands, wrists, feet, ankles, knees, back, or other parts of the body And then there's the occasional Neupogen which sets off more terrible joint pain. I could barely walk for 2 full weeks!! I'm only just getting better.

So, @brutersmom I'm seriously considering knee replacement early 2025 because my knee is not going to get better. It is old, has atthritis, and it's being made worse by all my medication. I'm trying to psych myself especially regarding recovery time and the pain i should expect, so any words about your experience are welcome 🙏.

@Rosebessie sorry you are having so much joint pain. Knee surgery has really helped. My onocologist recently switched me to Fulvesterant because of side effects. It has made a huge difference. I also know that my lingering left knee pain is gone. Fulvesterant blocks estrogen differently than aromatase inhibitors. Things that weren't healing right are finally getting there. After you have surgery, feel free to private message me with questions if you think I can help.

Hope everyone is ready for the holidays. I got smart and have help coming tomorrow to clean the living room, powder room and Dining area and kitchen so I don't wear my self out next week. All I will have to do is vacuum up cat hair. Along with this I have been fighting a business issue that happened due to nothing in my control. I think it was an AI decision. I also found out my new oncologist is leaving. Maybe this is why my stomach has been acting up. I started on my ibrance cycle Monday and the stomach pain and neausea has been awful. Extra stress. Nothing over the counter has helped so I took a Zofran last night and feel better today. Hopefully I broke that cycle. Haven't had this since I started on Ibrance.

Hope everyone has a nice holiday.

Malebreastcancer - I too read online yesterday about it being approved, but I don't know any details. I would imagine that if you google around, you can find more info. (I don't take Ibrance, and I don't have the mutation. I read this thread from time to time because I take the "sibling drug" Verzenio.) Good luck with finding out more, and maybe it can help you! Fingers crossed.