Ibrance (Palbociclib)
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Gigil - we understand! We do need to be aware of any new pain. If it lasts more than 10 days I call my oncologist. I have joint pain in my hands, on and off lower back pain and occasionally wear a back brace. It seems to happen more often when I am traveling so I no longer carry or pull heavy items without a plan. I had a lot of joint pain back in 2009-2015 on Femara and it disappeared when I was taken off of Femara. It is back, I am guessing due to fulvestrant. I only need advil once in a while so it's not too bad. My oncologist took me off of tumeric supplements when I was dx stage IV. Tumeric added to food is ok per my doc.
A special shout out to SF-Cakes and others who we haven't heard from in a while.
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Aprilgirl I have considered getting a wagon or something to move objects around my house. I will keep that 10 day time period in mind. My hands feel better off the Femara also. I am wondering if this buttock pain is related to my first Fulvesterant injection.
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I remember, about two cycles into the Ibrance, I had shooting pains down my right leg. I panicked, and started crying to my husband, "it's progression, I just know it!" (I was diagnosed Stage 4 de novo, so was still getting used to the idea). He kept looking at me like I was nuts, as I described what I was feeling, and I was getting more worked up that he didn't care. Finally, he sort of tilted his head, and said, "But you've had sciatica for twenty years..." I stopped and thought about it for a second, then started to laugh - that's exactly what it was. Whew, boy, in those days every ache meant progression in my head!
Haven't thought about it in a while, gigi, but maybe your leg pain could be related to something else. Are you, by any chance, on a statin for cholesterol? I take Lipitor, and about one year into the Ibrance, I had such awful leg pain I couldn't walk three steps without a cane. I spent that whole Summer in misery, then suddenly one day my husband (a retired pharmacist) had a hunch about the Ibrance. He researched it, and it turns out the Ibrance and Atorvastatin use the same pathway to leave the body. Since the Ibrance was "stronger", it kind of took over, leaving the statin to stay in my system longer. I switched the Lipitor (generic) to every other day, and the pain was gone. My cholesterol numbers are great, and I haven't needed the cane since. Just something to think about!
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Hi all. I have been trying to do my own research on this, but can’t really find an answer. I was diagnosed metastatic this past September. CT showed three spots (shoulder, L2 and left sacrum), shoulder was biopsied and was definitive for metastatic. Bone scan had said no Mets, just a lot of degenerative changes. I have now finished two cycles of ibrance, plus 3 rounds of faslodex. Went for a hip mri for pain, came back as Mets. This led to a ct, and More bone Mets and lots of liver Mets have shown up since September CT (there were none then). Finally the question: have I already failed at the ibrance/faslodex treatment, or is two cycles too little to know? There was just so much progression in those first 2 months. I’m getting past the shock, will see MO Thursday. And getting second opinions cause this is snowballing.
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Believe-This is definitely something to figure out with your oncologist and getting a second opinion couldn't hurt. I have heard that it sometimes takes Ibrance 4-6 months to work but I would be concerned about all that progression in two months. Again-I am not an oncologist and would rely on their expertise, not ours. Best wishes.
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Hello, has anyone been taking Palbociclib every other day or has changed to a lower dose? Please I need information. I'll start treatment with Palbo and Fulvestrant and I'm afraid of side effect. I'm a stage IV BC patient, bones and lung and I've just finished radiotherapy.
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oliviacaba,
I started out on Verzenio (abemaciclib) + Letrozol and got about 27 months with no progression, but finally stopped due to side effects. Then switched to Ibrance (palbociclib) + Letrozol and my only side effect was low neutrophils, so switched to lower dose. Palbocicilb was much easier for me in terms of side effects, but I had progression after 3 months. Many women get much longer runs on it.
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Olivia, I was on Ibrance 100mg + Letrozole for 64 months, tolerated it super well. No side effects after the first few months of fatigue. I was diagnosed Stage 4 de novo, so Ibrance was my first line of treatment. I had metastasis to my spine, and recently had a few extra "spots", so I'm now on Verzenio (three weeks so far), and doing quite well with that...
Most important thing to know: if one treatment doesn't work for you, there are plenty more to try!!
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Olivia, welcome to the Ibrance thread. I have been on Ibrance for just over 3 years. Like Ciaci, i did feel fatigued a bit in the beginning but that settled down after a couple of months and I have not felt many side effects. However, my bloodwork showed low neutrophils which led to a dose reduction, twice. I have been on 75 mg Ibrance for 2 years now and my blood work has not shown too low of neutrophils on this dose. I felt very concerned to start Ibrance and fulvestrant so I understand how you feel. Let us know how you are feeling when you start.
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After 2 years of Ibrance (mostly at 125 mg, then 100), I had progression in my liver. Those were zapped by SBRT last month, but my MO wants to switch me to Xeloda in January.
I'll have a brief break between them.
Wishing everyone good days during this holiday season. 🕊️
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oliviacaba - I started on 125 mg but by my 4th cycle I was already on 75 due to low ANC. I remained on Ibrance/Fulvestrant for a total of 19 cycles. My fatigue story was a bit different then Ciaci and Aprilgirl. At each drop in dose, the fatigue got better and was non-existent on 75 at first. As the months droned on, the fatigue built. I do know people who took Ibrance for 2 weeks on/2 off or a 5 days on/2 off schedule but have not heard anyone taking it every other day. Good luck. Wishing you many trouble free cycles on Ibrance.
Serenitystat - Xeloda did a great job on my liver and bone lesions I found it to be my easiest drug yet. I hope your experience is similar. Enjoy the break from meds. I know I did.
All - I hope each and every one of us gets to spend a blessed Christmas/Hanukkah with loved ones. Sending you all wisdom for every decision, strength for every battle and peace to calm your heart. ❤️🎄0 -
oliviacaba
I am on my 14th cycle of Ibrance 125 and Fulvestrant, I have not had much side effects except low blood count but in acceptable limits, have tolerated very well and most importantly it has worked very well so da
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My cancer was Er + , pr - and HER2-. I did not last long on arimidex (little over a year) before becoming metastatic and now I seem to not be responding to ibrance and fulvestrant after less than 3 months. Already signs of new bone Mets. I am so down right now. Does this mean I don’t have as many options lef? Thanks.
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believe60 - I am sorry you are feeling down! It is disappointing and I can understand why you would be down. I am new here dx Oct 25, 2022, but I do know there are other hormonal and targeted treatments out there so I would think there is other options for you. And just because this didn't work doesn't mean the next one wont either. I also am not sure how long you have to be on these therapies before they work? Maybe someone else in here longer in can shed some light on this?
Hang in there.
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Believe have you spoken to your doctor about next line of treatments? There are numerous treatments some used xeloda and enhertu is a popular successful one too. They may want to try radiation or ablation depending what the cancer is doing. And then there are always clinical trials. The moderators had posted a site yesterday on the thread my husband family my life, like a search engine for trials and prerequisites for qualifying. Hang in there dear. There are options.
Tany
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Did anyone experience mouth sores when taking Ibrance? If so, how severe and did they eventually go away
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Yes-I experienced mouth sores on Ibrance. Another woman here, PatGMc advised eating some Greek yogurt every day. It really helped. I don't have Greek yogurt every day now but several times a week and I haven't gotten mouth sores in a long time. Other women use this stuff called Magic Mouthwash. Maybe try the Greek yogurt-if that doesn't work, tell your doctor and they can prescribe something. Good luck!
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Magic mouth wash is rx, your MO can send in a script. Is good stuff.
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Thank you both. I have Greek yogurt in the house. I will try that and let my doctor know if it gets any worse. So, it eventually gets to be less of a problem
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SerenityStat, I am sorry you had progression but Xeloda is supposed to be a good med. Keep us posted on how you are doing!
Malebc - good to see your post - sounds like you are doing well which is great to hear.
Believe60 - I understand how you feel. It is challenging to "wait" and worry. We are here for you. I think you got a second opinion and they also said you should stay on Ibrance/faslodex as you have completed just 2 cycles. I would want a biopsy of one of the new spots that showed up while I stayed on Ibrance/fulvestrant. I understand that oncologists don't like to take us off a medication/treatment before they have given it enough time to work and in this case, it sounds like they think it takes 3 months at minimum. As Tanya and lovedbyhim mention, there are many more treatments to try in the future. Cure-ious is someone who is in this forum and she has an advanced degree in biochemistry or pharmacy or something like that. She does a lot of research and often has good advice. You might want to reach out to her on a PM about your situation? She posts on this thread from time to time but is no longer on Ibrance.
RK2020 - I love your Christmas/Hanukkah message and send it right back to you - hope each and every one of us gets to spend a lovely holiday with loved ones or enjoying the season, and good health, clear decisions and strength to all for 2023.
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Hi Ibrancers,
I was on Ibrance for 18 months. Around month 11, I had a bout of pancreatitis. Was wondering if anyone else experienced that while on Ibrance? (I’m on Xeloda now)
Lanne
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gigil,
I did not develop mouth sores while on Ibrance, but now have a couple after starting Xeloda. I was informed of Magic mouth wash, a compounded product, but was advised to first start using a salt and baking soda mouth rinse 4 x day. There seems to be different recipes out there, but the one I used is 1/2 tsp salt and 1/2 tsp baking soda in 1 cup water....added to a pint jar that is now sitting on my bathroom counter.....made fresh each day. I also read about cryotherapy for mucositis due to IV chemo. Obviously Ibrance is not chemo, but it's easy enough to suck on ice chips or add ice to a glass of water, and maybe that would help. Also my periodontist recommends AO ProVantage Dental Gel for sore mouth tissues. It's available on Amazon - expensive, but maybe it would help?
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gigil, I use an OTC mouth rinse by Orajel. I don't get bad mouth sores, but it seems to keep them at bay. I think it has hydrogen peroxide in it.
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gigil - I had mouth sores on Ibrance and they invariably indicated I was going to post a low ANC score and have to hold a week. I used OTC mouthwash Colgate Peroxyl for management as they didn't really hurt, just were in awkward spots.
No sore problems since starting Lynparza, but I have much stronger blood work too.
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Sondra, how interesting that your mouth sores coincided with your low ANC count. I hadn't made that connection with mine.
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SondraF - interesting observation. The only mouth sore I got on Ibrance was when I took 125 mg for 14 days. My ANC tanked on 125 and that was the lowest it’s ever been.
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Thanks everyone for the good advice on mouth sores. I am following it. Hope everyone is having a good holiday season. GiG
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Has anyone experienced a sore scalp with Ibrance? If so, have you foun any remedies that work?
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gigil yes sore scalp and mild hair thinning which resolvedafter a short period of time.
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