Ibrance (Palbociclib)
Comments
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Hi
I'm new to this forum.
I was first diagnosed in 2001 with BC and had several remissions since then. Recently a new scan revealed that I have several metastases in my liver. I have been on letrozole 3 years.
The plan is that I'm going to take ibrance and faslodex. I'm scared to death! Of course lymphedema should be a very small problem right now, but anyway it part of the fear that I have for the SE. I developed lymphedema in my left arm in 2008, and though it has got worse it's still manageable with compression and 2 visits to the physiotherapist a month. So far I haven't had any incident of erysipelas.
It seems that one of the major SE is the risc of infections. I'm so afraid of getting erysipelas as I understand that once you get it, it will keep coming back and you need to be on penicillin again and again.
Anyone else with lymphedema who can share how ibrance effects the lymphedema and the risc?
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Has anyone ever gotten eye mets? I am having issues with one eye and it's scaring me
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Hi, Dianarose...
Unfortunately ocular mets are not uncommon with ILC--sometimes it's in the bones around the eye, sometimes in the muscles that control the eye, and less commonly in the eyeball itself. It is difficult to diagnose (as is other lobular mets, damn sneaky cells...), but would be usually be treated systemically. On the east coast, the Wills Eye Hospital in Philadelphia has a few specialists familiar with lobular ocular mets....
There's a greater chance you are having an effect from your aromatase inhibitor that is affecting one eye more than the other. Best to go to a good ophthalmologist and get a thorough eye exam.
I have ILC with vision changes, greater in one eye than the other. Had CT and MRI scans that were inconclusive, but the visual changes have remained mostly stable lately, so we are just watching it....
I hpe you find out that it's just a bothersome side effect of your treatment. How's that for a wish??
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You all know so much more than I, and you are teaching me so much. I get occasional blurred vision but my MO says it is ses. It is minimal so I haven't worried too much about it.
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Lisbet, welcome to our little corner of the world! You will meet a number of people here whose liver mets are stable or resolved on Ibrance. Be sure to add your disease and treatment profile so they can find and encourage you. Like you, I'm a long time BC survivor...23+ years, 5 with MBC. I've been on Ibrance/Arimidex for 9 cycles and most of my bone mets are now inactive. My oncologist has told me from the start that he has had no one on Ibrance get an infection and that, even with low blood counts they're not seeing great risk of infection. I pray that you will stay well and that you won't let worry about what might happen take away your joy in living. If you're like most of us, fatigue will be your fairly constant companion and a little light exercise will help with that. God bless you, new friend. I look forward to seeing your great scan results in 3 months or so!
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Welcome, Lisbet. My onc, too, said that she doesn't see a problem with infections when on Ibrance.
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Mica1- when I close my eye or when's it's dark I see silver squiggly lines. My eye hurts and now it's twitching. This started back when I was doing the Taxol and A/C . Wasn't getting the Faslodex then.
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Hi ladies, I need some support. I have diffuse bone marrow mets and started Ibrance about three weeks ago. Unfortunately I only managed 15 days. I'm now anemic and my neutrophils tanked. I have had a one week break. But, my SEs of dizziness, incredible weakness and fatigue continue. I'm at the point where I need to stop and catch my breath when walking up the stairs. Now my bone pain has returned and I'll be putting myself back on some heavy duty pain killers. This is not living. This is exsisting. Did anyone else start out " badly" and then have things improve? All input is appr
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JFV- what dose did you start with? I only made it 18 days on the 125's and had ten days off to get my counts up then dropped to the 100's.
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Dianrose, I started at 125. 100 is working for you ?
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Also, Dianarose years ago when I first finished chemo my Oncologist had me get my eyes checked because chemo can mess with your eyes. I was told those things you see when you close your eyes are called floaters and flashers. They are part of the ageing process. I think I was told treatment increased them.
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JFV- yes, the 100's are working out much better. On the 125's my platelets got to low. On the 100's they have stayed in the normal range. I have been anemic so long it's now my normal. On Taxol and A/C I was so tired I slept a lot. I Ibrance it is more of a feeling of weakness then tiredness. By the third week of a cycle I have no energy. I still push and refuse to nap. Also on my weak off it seems like I have way more hot flashes. Everyone reacts differently. The good news is after the first two cycles my tumor marker dropped a lot. Finished my third cycle last week so haven't been tested for them yet.
Thanks for the information on the whole eye thing. It's frightening.
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JFV- I have mets to my spine and skull. Had a lot of pain just prior to Ibrance. Now if I get pain Tylenol works pretty well and no prescription pain Med's. Hang in there. Maybe you just need to lower your dose.
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Dear JFV, first I'm sending you a big supportive hug. I'm always beating the drum for 100mg Ibrance because my oncologist told me he never prescribes 125mg. He has found that 100mg makes for a much better quality of life and works very well. My widespread mets improved dramatically after 3 cycles and much more after 9 cycles. You can do this! About the pain...with my orthopedic oncologist's permission I was evaluated and treated by a physical therapist. It turned out that most of my pain was in soft tissue and was resolved with therapy to the fascia! It had nothing to do with the cancer!
I'm going to be praying for you, JFV. Keep hanging out here with people who believe in the game changing ways of Ibrance. Those pills you took this month are doing their work and if you can start the 100mg or 75mg, you can keep up that good work. There are certainly other drugs but Ibrance is worth a good try. Please know we're all pulling for you!
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Thank you Pat ! I'm in need of your positive words. I'll ask about an evaluation for physical therapy. These pain meds do little for the pain and just make me feel weird.
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JFG, sorry for the error in my earlier post. My onc never prescribes 125mg...always 100mg! I edited.
I have had bad side effects from pain meds in the past too. My onc recommends a combination of Motrin and Tylenol instead of prescription meds when people are not in rough shape. I have side effects from those too. They just tear up my esophagus and my tummy. I do hope you can see a PT. I had no out-of-pocket costs and had 13 visits.
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JFV-I was dx with mets to my bone marrow last October. Started Faslodex and Ibrance 75 mg in November. First cycle of Ibrance was to be 21 days on/7off. Never made it past week 2 because all my cell lines tanked. Since then I've been on 75 mg every other week (and the monthly faslodex) and my body is responding very well I do suffer from fatigue, sometimes profound fatigue during my off week. You learn to adjust. Best
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JFV--I also have bone marrow mets (as well as many bone mets and mets throughout my peritoneum) and could not begin to tolerate 125mg or 100mg-- but I have made it through the past 2 years on 75mg without ever missing a cycle for low counts (I did cut a cycle short and wait an extra week when I had oral surgery, but that was preventative and not in relation to low WBCs, ANC and/or RBCs).
Dianarose--the blurry vision and floaters/squiggly lines are most likely due to changes in your eye due to lack of estrogen, which for us accelerates our aging process. My oncologist says that every year on an aromatase inhibitor/SERM/SERD is like 3-5 years of natural post-menopausal aging. Shouldn't be painful, though....might want to schedule an eye exam just to be sure that there's nothing nefarious going on...It's probably just low estrogen, really, but go be sure.
I'm also a huge believer in PT for treating muscle and joint pain, so I second that suggestion. It's a slow process, but can be very helpful. Heat and ice and some tylenol or advil (depending on your liver and kidney function...) can help.
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mica1....I love hearing that you've had 2 successful years on 75mg! I wonder if it might not be enough for all of us. I look forward to seeing you "Thrive on 75" for many more years!!
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Considering dosages are determined by a phase 1 trail at which maximum tolerable dosage is found, its no wonder prescribed dosages are so close to intolerable. Yes, the phase 1 dosage is used later to test effectiveness, but that doesn't answer the question as to what dosage is necessary to get results. Simply that the maximum tolerable dosage proved effective. I doubt the drug companies want to chance a phase 3 trial that determines approval or not, by using anything less than the highest tolerable dosages.
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I agree, Husband11, that's where our individual oncologists, with major input from us, the patients, will come in. I imagine Pfizer will be keeping data on those of us who are on the lower dosages and how long we remain at No Disease Progression.
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Hi, I have been on 75 mg for about 20 months after having problems with 100mg the first month. I have had an excellent response to the 75mg. I have also found that my body seemed to adjust to the medication after a couple of months. I still have fatigue and mouth sores, but the fatigue is mamageable.
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actually, in the phase III trial, they tried all three doses, I believe. 100mg was as effective as 125mg, which is why i dropped down to 100mg despite fine bloodwork. 75mg did show slightly less efficacy, but i don't believe that is the case for women who are having a lot of side effects. that is a sign you may be metabolizing the drug slowly and getting a high effective dose. possibly too high.
anyway, i don't understand why your doctor is not aggressively dropping your dose, JFV.
>Z<
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lisbet - don't be scared. Faslodex is relatively easy. I get 2 shots into my hips simultaneously (the love handles bit of my back are scrunched) it's stingy going it but doesnt take long and is fine afterwards. I have mild lymphodema in my right arm. Not problems what so ever there. I did get a little rash on my feet after 24hrs in on first cycle. Disappeared within a day or so. Onc was not worried. Several people have had one. My only issue on 125gm first cycle was i only lasted 13 days. Nuetophils dived to 0.6 like you JVF. I felt fine on day 13 when I was told but I did get very tired the next week. Weepy tiredness and struggled to think straight or do a lot. Everyone in group starting with me at hospital were ALL taken off ibrance around day 13 on first cycle. Glad to report cycle 2 is going much better. No issues at all. Energy has been good. I'm on day 19 and starting to feel tiredness kicking in. Maybe 2nd cycle may be easier after your body adjusts. I felt better reading that the other ladies here never got an infection. I'd like to stick out the 125 for as long as I can as I progressed a bit on hormones alone and would like to claw back some lost ground if possible as long as it's not affecting my quality of life.
Great to hear ladies are doing well on 75 for long periods of time too!
Listen to you body and onc and adjust dose according. All the very best. Great thread full of information and experiences here!
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Welcome Lisbet. As you can tell, we all are different but want you to know we care.
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Lisbet, another thing on the Faslodex shots. Most here have heard about this already, but it bears repeating for new folks. One of the gals on the site pointed out some time ago that if you take Claritin (I take the generic Loratadin) 2 days before the shots through 2 days after the shots, it dramatically reduces the pain associated with the shots, at least for me. I think that Z takes it daily, and now I do as well. I did call the specialty pharmacy, as directly, before beginning this over the counter drug, and it was fine for use while on Ibrance. My onc approved as well and was glad to hear about this "trick". Don't be frightened...be joyful that this powerful drug is available right now when we all need it!
Hugs to all, as always...
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Hi, a friend has just been diagnosed in the Manhattan beach area of California. Does anyone have recommendations for breast surgeon and/or Mo?
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Yes, Zarovka, you are right. This drug is unusual in that it almost certainly requires a dose reduction during use, so frequently that they designed a protocol around it, and no doubt kept track of the results of the various groups.
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Pat, Husband, Z, Lilly, single,pat, mica, scout,and Diana,
Thank you so much for the information. Knowing that a lower dose should work gives me great comfort. Slept over 12 hours last night and I still have no energy.
I will alternate Tylenol and ibuprofen for the pain in hopes it works. The prescription stuff is too much. I'll also add extra acid reflux medicine. I did find there is a pain management group nearby that uses a number of ways to manage pain. I think I'll see about getting an appt when I get some energy.
Z my Onc suspended my Ibrance after my blood work tanked about 10 days ago. I get another blood test today. Considered how I feel I assume my numbers will be slightly better. I see the Onc on Thursday. I assume we'll talk about restarting again and dropping the dosage. I will also get Falsodex and Zometa on Thursday.
I get very frustrated. I actually felt better before treatment began and assumed since I am stage 4 treatment would be gentle so I could do more than sit on the sofa.
You ladies have been so helpful and so encouraging. If I forgot your name forgive me. I want to thank all of you for your kindness
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I got my pet scan results today and there was no progression. Tumor counts down even more. But all along they keep seeing something going on in my right lung. Onc says Pet scan can't determine if infection of what kind. I have had the crude for about 3 wks..up until the week of the scan. So, they are going to stick a tube down my throat (I know there is a name for it) but can't remember. Hopefully, they kind find out what is causing the spot to show up. Have any of you had this throat procedure?0
