Ibrance (Palbociclib)
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Rosebessie I dont see why you can't go back up. Have you tried the 5 day on 2 off. My neutrophils haven't dropped below 1.5 since switching. I was barely able to get to one without a 2 week break.
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@brutersmom hi there, Thank you for responding to my question. I shall try the 5/2 on the 100mg. I never did give it a try before dropping to 75mg. I'll see how it works for me. Im praying its ok because I don't want to take a forced break. Especially since my last week's mammogram and Ultrasound showed a 0.5cm lesion where my original breast tumour was at diagnosis in 2020. Plus I've been getting some sharp pains from that location. I've no idea if the lesion was always there since the PET-SCANs of 2023. 2024 and April this year all had NOT Evidence of Active Disease. This cancer journey has many tough decisions.
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After persistently telling my Oncologist I was feeling some activity in my left breast, where my tumours were found at metastatis in 2020, I opted to get a breast surgeon to give me a referral for a mammogram and Ultrasound. I was right coz they discovered a 0.5cm lesion. Upon further investigation via an MRI, three more wre seen, in the same breast, plus the original 3 metastases lesions originally seen in the liver, and which PET-SCANS of 2024, and April 2025 did not see. So I guess a biopsy is next. I'll know for sure when I discuss this outcome with the Oncologist plus a second opinion.
The moral of my story......always follow your gut instinct. And if the doctor of whatever specialisation isn't listening, go to someone who will listen. Having said that, I really wonder if doctors ever stop to listen to their patients?? Do they know how to listen when the patient, the owner of the body they are treating, actually opens their mouth to speak? Is there any part of their training that teaches them to listen? Or do they all have tunnel vision? Too often, they outrightly dismiss a development that cannot be explained by their book learning or personal experience with other patients. FYI, im good, I'm moving on to the next treatment step. I've no anger because this happens anyway. Medications do stop being effective at some point. Anyone want to comment?
Will update you
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Rosebessie So sorry you found more cancer. You did the right think by pushing for what you needed. I hope the next step works. I should mention that my dr. will only do ctscans and bone scans. I have had many oncologist trying to find a good one. They feel that pet scans find to much or to little. They did say there is a place for petscans but for my situation my current protocol is better. All I can say is we need to stand up for what we feel in our body. My current oncologist is good. Not all of them have been. I recently switched my PCP because he said I had stage 4 cancer and didn't seem interested in addressing my bp issue. The fight is real. I have switched every single dr. even my ophthalmologist. My new one left and I got another one assigned to me. My old ophthalmologist was concerned that I was a super responder to steroids and had started evaluating it. The new dr said on 4% of the steroid responders are super responders so I doubt you are.. I asked him if he looked at my drug reaction list. My only comment is moving on.
Please keep us updated and keep standing up for yourself.
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@brutersmom you're absolutely right. My Oncologist just repeating over and over again how the PET-SCAN didn't find anything, and for that reason we've nothing to worry about. How, "You know, Cancer never comes noisily, it comes quietly. So i dont think theres anything to worry about. This is most likely something else." But I just wasn't buying it. And, here we are. You're definitely my kind of girl when it comes to switching doctors because I feel they aren't meeting my needs. Thanks so much for your moral boosting words. I'm still mulling on how to deal with all this but I'll keep y'all posted. Love, hugs and blessings to you ❤️ 🤗
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@Rosebessie Thank goodness you followed your instincts. Keep us posted on your next steps.
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I had a great run on Ibrance but now have progression and am going to get Doxil next along with Faslodex
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Sorry you have had progression. How long were you on Ibrance?
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I was on Ibrance 2yrs and 8mos. So a really good run.
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@wren44 im sorry about your news. What progression do you have?
Ive just discovered progression in the same breast, same biological markers (ER+ HER2-), same spot as the original tumours. Some small lesions were seen and tested via Biopsy. I haven't yet seen my oncologist to know what next but im still taking my ibrance as i calm my anxiety.
Anyone else had same localised progression ? I'd love to know how it was treated.
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My progression was finding spots in my liver and known bone Mets lighting up more. Just had my first Faslodex shots. Don’t know if it’s always on both sides or if that’s a run in practice. They heat it up for 30 mins and gave me a back number to call to tell them I’m on my way.
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@Rosebessie Localized progression was suspected for me although never quite clear. I still have my original tumor and a break out tumor in my breast. I am planning to get cryoablation later this fall to get rid of the tumors in my breast. It's still not widely available in the US. The tumor board at my cancer center recommended radiation, perhaps because they do not yet offer cryoablation for breast cancer. I thought the risks of cryoablation were smaller, although there still may be some unpleasant, hopefully temporary side effects due to the location of my tumors. Best wishes as you figure out what to do next.
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@chicagoan hi, its been a while since we chatted. Thanks for sharing your similar experience. When you say suspected, does that mean the progression was never confirmed via PET-SCAN or MRI? From the sound of it, you didn't change the CDK4/6? Im also curious why the cryoablation (never heard if it so I've learnt something new). Is it that Ibrance didn't shrink that original tumour, or did it shrink it but not enough?
My progression lesions are small, I think the biggest is 9mm or something, but multiple, 5 in total, I think. But my original tumours shrank and kind of withered away since I started treatment in 2020 coz they've never appeared on the PET-SCAN.
Im due my next PET-SCAN next month so that's an opportunity to compare and update.
I appreciate your sharing. Its very helpful as I try to understand what's happening inside me. Big hugs 🫂
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@Rosebessie Yes-sometimes based on the CT scan progression was "suspected" but never confirmed. The rest of my body was stable so there was not much concern. Since I have done well on Ibrance/Letrozole, both my MO and I would like me to continue on it as long as possible. I don't know how I found out about cryoablation but I researched it and it makes a lot of sense to me. Japan has been using it to treat early stage breast cancer for almost 20 years. Ibrance originally shrunk my tumors which were quite large and ulcerated. One of the breast tumors disappeared but the other one just decreased in size. I've never had a PET-SCAN-just CT and bone scans. I recently had an ultrasound and MRI on the breast to help prepare for the cryoablation. I also had an ultrasound last January. The weird thing is that the tumor seemed to shrink a bit since then.
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Chicagoan I’m so curious about the cryoablation. Putting it in my back pocket for later.
Rosebessie I so hope those lesions disappear on the next PET.
Plugging along 17 months now on Ibrance/Letrozole/Zometa. Next scan isn’t until January. Except for the fatigue I’m doing well. We had to put our beautiful pup to sleep last week so I’m missing him something terrible. He was a big part of my recovery and healing especially since diagnosis. I miss my walking buddy as well.
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wren44. Yes it is always on both sides. My clinic no longer has to refrigerator the shots because the company they use modified the formulation. I find that walking after the shots really helps. Masaging the area can spread the drug to quickly and increase side effects. Same with to much heat after the shots although I do find the seat heater on low very comforting on cold days. I lake to do but stretches of various types the week before the shot and afterward. Seems to help with discomfort. I also like to hydrate extra for a day or two after the shot. Don't worry if your pee stinks. That is normal. Some people get a funny taste in their mouth for a day or two. Both those issue are ussually gone in 2 to 3 days. Remember when getting the shot to keep your weight off the side that is being stuck. Helps relax the butt muscles. I have had very few issues.
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@sully01 So sorry about the loss of your beloved pup. Pets seem to understand what we go through better than humans many times. I have a cryoablation thread that I started. I update it once my procedure is scheduled and let people know how it goes. No one else on here seems to have had cryoablation based on my inquiries.
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@chicagoan thank you I’ll check out your thread.
@brutersmom thank you for all that info about Fulvestrant shots. I’m so worried that will be in my future even tho it is an effective treatment. I have zero fat on my bottom, now don’t ask about my belly lol
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Sully01. You have time to build some muscle. The nurses joke sometime about my butt. Especially when I tell them I did glute workouts on preparation. They like the fact that mine is mostly muscle. I am 73 and I still workout and do weights.
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@sully01 sorry about the loss of your beloved pup. I hope he went straight to pet heaven. And thank you about my progression. At first I was overwhelmed at the thought of a whole new treatment plan and dealing with a whole new set of side effects. But I've kinda pulled myself together and relaxed as I contemplate my next PET-SCAN. Ive read some very encouraging stories here of women braving so much. Surely I must also try 🙏🏻🙏🏻🤗🤗
@wren44 Sorry youre dealing with progression and I hope the Doxil and Faslodex plan does the trick. Did the biological markers of your metastasis change?
@chicagoan I hope the cryoablation goes well, but keep us posted. Ive also been otherwise stable, despite the new breast lesions. Im keeping an eye on things to see if i really need a change of medication. You've shed some light on a grey area. I take it the breakout tumour was a new development? Im sorry about that.
@brutersmom 73 snd still working out. Way to go girl. I try to do "something" everyday, but the fatigue sometimes gets the better of me. Thanks for sharing that very detailed guidelines on how to manage Faslodex. Ive saved it for future reference. I do wish meds came with some kind of information to help us manage the process with minimum side effects. But, at least we have each other
Love and hugs to you all 🤗🙏🏻❤️🫂
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Rosebessie That is what works for me. I have had very few problems. Next shot will end the first year. I started exercising back in 2017 after I developed some serious side effects from aromatese inhibitors. My surgeon said in early studies exercise showed almost as much benefit as aromatase inhibitors in preventing recurrences. My recurrence happened about 4 months are the miniscus detached from my knee and it became painfull walk. I had to stop the high intensity exercise and do mostly did weights. I go to a gym and have a group of people I work out with in classes That keeps me motivated. The fatigue is real but I find exercise helps. The nice thing about classes is my instructors help me work at my pace and we encourage each other. I did have my knee replaced 1½ years ago but I developed scar tissue . The pain is gone but I have to work daily to keep the stiffness under control. They think it is due to the cancer drugs. I try to keep moving as much as possible.
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Hello Ibrancers,
It’s been a while since I have checked in. This thread seems so quiet now, unlike when I first joined in the spring of 2021. I wonder if it is because those were Covid years and we were all home and now everyone is back to being busy and out and about, or if there are fewer of us. I was going to say I hope everyone is managing, but really, I hope you all are thriving.
I started my 54th cycle of Ibrance last week and am grateful to still be taking it as my first line. I also had a PET this week..: maybe my 12th one? Things are stable but they noted hepatic steatosis. I googled it and it is fatty liver disease. Has anyone else developed this while under treatment? I’m also taking Letrozole and read that aromatase inhibitors can cause this. Wondering how serious this is… anyone have any experience with it?
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@sunshinedaydream I wonder if this thread is quiet because most American women now seem to be put on Kisquali instead of Ibrance? I haven't heard about anyone getting fatty liver desease. I hope it is not a problem for you.
I've been on Ibrance for a long time-over 9 years but a recent MRI discovered active cancer in my hip. I had a hip replacement. The confusing thing is that my CT scans and Bone scans never showed this cancer so I don't know how long I have had it. I'll meet with my oncologist in a few weeks to see if she advises me to switch to a different treatment. Ibrance has been really easy for me but now I don't know if it is working and no longer feel like I can trust the CT and Bone scans. I have never had a pet scan or tumor markers.
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Sunshinedaydream. Sounds like you have been doing well. I don't know much about fatty liver disease. My husband had it but he was a type 2 diabetic. Once he started on metformin and a statin it went away. Hope you figure it out.
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Hello @chicagoan and @brutersmom!
Thank you for responding so quickly!@brutersmom - I am glad to hear it can go away. I am going to try to find a hepatologist so I can nip this in the bud.
@chicagoan - I am sorry to hear about the newly discovered cancer in your hip. 9 years is a very long run, you must be one of the first to take Ibrance and possibly been on it longer than anyone, certainly most. I am sure it is frustrating to have CT scans and bone scans and not have them pick up the new cancer on your hip. I hope your team finds a treatment to knock it out. Please keep us updated.
That is interesting to hear that most newly diagnosed women are being put on Kisquali. When I was first diagnosed, the oncologist I met with was moving to a new location and knew she wouldn’t be treating me further. She asked me if I wanted to take Ibrance, Kisquali, or Verzenio. I couldn’t believe she was asking me to choose. I told her she was the expert and should tell me which one to take. She said ‘Verzenio causes Diarrhea, and no one takes Kisquali, so let’s put you on Ibrance. Sheesh. I couldn’t believe how indifferent she was about it, meanwhile it was such a huge thing for me. Do you know the reason for the switch to putting everyone on Kisquali?
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@sunshinedaydream I think Kisquali proved to be slightly more effective than Ibrance in a trial. However, it also brings the risk of heart problems and people seem to complain of nausea. Ibrance has certainly been effective for me and very easy to tolerate. Hope that you will have a long run on it too!
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@sunshinedaydream have you been tracking liver enzymes AST & ALT? If they’ve drifted up, you can add more omega 3 from food sources, cruciferous veg like broccoli sprouts, 1/2 tsp black cumin seed oil with food. You should be eating with insulin sensitivity and optimal glucose in mind (whole food diet, no processed carbs, etc.).
In addition to scans, a lot of places are doing ctdna testing like Guardant or Signatera, which offer an insight into shedding dna from circulating tumors. They’re much more sensitive and can pick up active cancer faster than imaging. I would also ask for that and for pet scans going forward since you know the CT isn’t picking up everything. Wishing you all the best.
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thank you @chicagoan! I have had dose reductions, many breaks, and now on a 5/2 cycle so I can stay on Ibrance. Hoping to continue for many many more years.
Hi @aimeeeee, thank you for responding. When I was first diagnosed, I went on a strict diet similar to what you described. I lost 30 pounds in a matter of months. After about 2 years, I decided I wanted to eat and enjoy birthday cake and ice cream and pizza with my kids. I’ve let that get out of control and have gained back 20 pounds. Once I saw the note of hepatic steatosis, I jumped back onto that original diet. I’ve been hungry and craving processed snacks all week!
Oddly, my AST and ALT have always ran low. AST ranges from 14-16 (I had a spike to 19 in January but it came back down the next month). My ALT is very very low - very often <10 (with a spike to 14 in January - also came back down). I’ve always thought these were on the very low end.
The center I go to runs CEA and CA-15 blood tests to check for tumor markers. My CEA has been on a steady decline but my CA-15 recently jumped up 5 points 4 months ago. My oncologist says she doesn’t think it’s a relevant increase. For reference, I was at 160 at diagnosis, then lowly down to 33 before the jump back to 38. It’s been hanging steady there since July.
I did get referred to the Hepatology department and have an appointment in a couple weeks. I’m hoping this can be diet controlled and is not a sign of something worse.
Hope everyone is enjoying the weekend!
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