Ibrance (Palbociclib)
Comments
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Thank you NkB, I found the thread.
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Ceci I am on xeloda because the ibrance stopped working after 16 months, and I had already been on letrozole and then aromasin. So far I am refusing afinitor.
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Hi HLB, why are you refusing Afinitor? Curious as I am just starting Xeloda (major fail on Anastrozole) and my MO has suggested Afinitor would be his recommendation for the next hormonal.
Thx. Pat (2)
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Hi Pat, it just makes me nervous about the side effects. Based on what I have read here and on the drugs information page they seemed worse and more severe than other drugs. Just one in particular is pneumonitis, which was 19 percent on the drugs info sheet. It's a serious complication and for some people seems like they never get over it. 19 percent seemed high to me, plus the fact that I smoke. I've been lucky to have not had many side efects with anything, so I could be worried for nothing. If things get worse I'm sure I wil probably try it. Also, at the time I had only had one treatment, and after hearing so many pl say oh don't worry, we have so many things to try, I was irked that he wouldn't consider anything else and after one treatment I was going right to the land of mouth sores and all kinds of posible debilitating side effects. I still keep up with the A/A thread to see how people are doing with it. I like to be prepared for effects rather than being drug through he'll before the dose is reduced. I would have tried 5 mg but that was a big fat no! Sorry that was probably to long an answer.
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Pat I hope this isn't discouraging to you. As we all know, people respond very differently and there are people who have had good results with it and no SES. If I do ever try it I will probably be one of them, even though I get nervous that's how it usually is. Just would rather save it for another time. I want to work ft as long as I can. Not sure how I could even manage this disease if I ever have to stop.
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Thanks HLB. I don’t know much about it so need t do my research. I was a bit surprised when he mentioned it - for months he was suggesting Faslodex as the next stop or Xeloda. I have progression in my bones and chest/abdominal wall so wondered why he made the mental switch. He must be looking at something he thinks is stronger. I think my progression, so early in, was a surprise to him. I’m so many years out that the assumption has been that it is slow growing.
Appreciate the response. Pat
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Welcome Amarantha and ❤️ your Avatar photo. I started Cycle 3 of Ibrance and Faslodex last night and still 125 mg so very new to this too.
For those of you who work, I admire you!
I have a question for all of you on Ibrance. Have any of you had a change in eyeglass prescription? I felt that my eyesight was fuzzier recently and 10 days ago saw a new optometrist. Same group of FYI optometrists here in BC but different city as we moved in June. I had forgotten when I last went in Vancouver but followed up and it was only last December 22. My prescription since then has gone from 2.75 to 3.75 after being stable for several years. I mentioned it to my MO on Thursday and he asked me if anyone else had commented on something similar. I guess our doctors are depending on us since this drug is so now~~17 months in Canada not counting trials. Anyone know how long the trials were?
Bedtime after a super busy but fun weekend with 4 young (30's) people including my daughter plus a couple who are old friends staying with us. Two late nights and so worth it.
❤️Maria
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Pat that is surprising that the first TX didn't work very long. I was 8 years from stage II when Mets showed and he said that was in my favor. It's so unpredictable what will work and what won't. It seems like sometimes a few things don't work, then they hit the right one and it works for years. Ibrance/faslodex was my 3rd TX and it worled for me longer than the first 2 did.
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Maria I have been feeling like my eyesight changed since starting Ibrance. I have yet to get a check done but really feel I need stronger glasses now. Just started 4th cycle and it is only over the last few months I experienced this.
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HLB, thanks for your answer. Sorry the ibrance failed, but I hope you'll do great on your next treatment. I 'm glad to see they don't go straight for chemo after the first line of treatment fails.
Have any you ever heard or does anyone take meds from the everolimus family and such? I've heard they can be helpful but also read they shouldn't be taken together with ibrance and wondered which is "better" or why it isn't used as much but also have seen people on these forums who've taken both although not necessarily at the same time.
My onc seems under the impression that taking femara + ibrance must mean taking the pills together at the same time. Is there a reason for this? because otherwise I would rather take them at different times each. Thanks everyone keep the support and good advice coming.
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Good morning...
Maria....My eyes seem to be getting worse. I just keep buying stronger reading glasses.
Ceci...Like I said, I've never taken the two together. I don't see what difference it would make. I wasn't advised one way or the other and I don't really know why I decided not to take them together.
Has anyone had tinnitus from this combo? For the past couple months I've had a swishing sound in my ear....driving me nuts. It sounds like I'm listening to the sound of a carotid ultrasound.
Breakfast time...
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Maria and nonahope I did wonder if the anti-hormonal could be causing our eyesight changes. I was thinking about an eye test I had during my original treatment when I was taking anastrozole. The optician said then this could cause eyesight changes. I just did a little reading and there seem to be some links between lowered hormone levels and changes in eyesight.
Nonahope, I got tinnitus on my original treatment too, caused by the anti hormonal. It did lessen considerably but often I get a very mild ringing noise.
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Marianelizabeth,
I had a big change in my prescription once I started the Ibrance/Letrozol combo. I think its due to the Letrozol. It was my reading vision that got worse. I got the prescription changed after a few months on the combo-now my eyes have been stable. Another friend on just a hormone blocker also experienced a dramatic loss of sight.
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ceci, you don't really need to take the pills together since the 1/2 life for letrozole is about 24 hours and the 1/2 life for Ibrance is about 7 days. You take letrozole every day of the month while you get a week off from Ibrance.
I got 18 months non-progression from letrozole alone, but I had never taken a hormonal after the first diagnosis, so that could be why. I'm starting my 10 cycle of faslodex and Ibrance this week.
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Thanks a lot Cive. I'm starting femara tonight. Will come back with more questions later if that's ok with you all ^_^
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Thanks for comments re eyesight. Since my new glasses (Friday) cost $1000 I am going to be watching (no pun intended) this closely and have another eye exam scheduled for early January. Seems worth another $148 for an exam than going past the 3 months and change happening again. Chicago, I am on Faslodex with the Ibrance and was on anastrozole for 4.5 years prior. No chances at all while on the AI and I have had yearly eye exams.
Marian
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Nona-I do have that swishing sound in my left ear. You describe it perfectly-it's like I can hear my blood flowing. I've only had it for a few months-it's not too annoying but a little strange. I didn't know it was tinnitus and never associated it with the Ibrance/Letrozole. I started swimming regularly in August and figured it had something to do with that. Hmmm...?
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Interesting comments about the tinnitus everyone. I have noticed over the last month or so that I have a clicking noise in my left ear when I talk/swallow. It will be interesting to see if it disappears now that I am off Anastrozole. I like this explanation better than where my mind went... I'm sure you can all imagine!
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I started having pain in my groin area. I'm on my fifth round of Ibrance and faslodex. I read that faslodex patients have groin pain but it's usually much later in the treatment. Has anyone experienced this?
Tanya
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Hi All! I have been reading posts once in awhile and enjoying seeing those who have made progress. My condition has been pretty stable until just recently. I've completed my 19th. cycle of Ibrance last Friday when I saw my MO. He gave me the results of my latest PET/CT scan and my liver mets are acting up! He's switching me from Letrozole to Faslodex which I'm just thrilled about (sarcasm intended!). I'm hoping that I can get the Faslodex without much SE. Did any of you receiving Faslodex encounter much nausea afterwards? That's primarily my concern as I'm already tired from the Ibrance but totally hate being nauseated. I have a prescription for Zofran which I'll get refilled just in case. I have not seemed to have many side effects from either the Ibrance or the Letrozole, except for the fatigue, and they have been effective for approximately 19 months. I haven't really been down about the whole thing since I was first diagnosed but I'll have to say finding out that the disease may have resumed it's progression was getting to me this weekend. I hope all of you are doing well in your txs.
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I've never had the remotest problem with nausea with Faslodex.
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My experience is the same as Joyner's - no nausea from faslodex. My MO said that he rarely hears of SEs from faslodex. I know how upsetting it can be when we see progression. I hope that faslodex stops that progression and works well for you for a long time.
Hugs from, Lynne
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Chicagoan....My daughter is an audiologist -- that's how I found out it was tinnitus. It's called pulsatile tinnitus. It can be caused by anemia and hyperthyroidism -- I have both. And, it could be fluid. She said it's usually nothing serious. Mostly annoying. And, annoying it is!!!! I am going to mention it to my onco when I see him on Nov. 2 and see if he thinks Ibrance/Letrozole could be the cause. Funny....mine is in the left ear, as well. And, I don't think there is a cure. I'm not a swimmer, so I can't blame it on that...but, maybe that's what is causing yours.
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I get the swooshy sound in my left ear and I thought it was blood flowing through the carotid. It matches the heartbeat. I figured I had carotid stenosis! Lol
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Okay... that's just bizarre. Four of us with issues with our left ear???
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Wallaby. No Nausea from Faslodex. Can't even complain about a sore bum. Good luck with your treatment. Oh smelly urine so drink lots of water. Mair
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I have had tinnitus in both ears for 39 years now. I got a virus that settled in my left ear when I was 18 and it damaged by 33% the balance function in that ear. At the end of the first year, my PCP sent me to the Shea Clinic in Memphis. That was where the confirmation diagnosis was made. Dr. Shea told me I would be on Valium for the rest of my life to control the vertigo, but I can go for years without when my health is good. But I have tinnitus 100% of the time and have had severe bouts of vertigo bouts every decade or so, and always have a mild amount of vertigo. Before I started my 4th cycle of Ibrance and letrozole, I had to ask for a prescription for Valium 10 daily to control the vertigo because the vertigo and tinnitus got worse. It is doing a good job of controlling the vertigo, but the tinnitus is louder than it has ever been in my life. I have to sleep with a fan blowing in my bedroom to drown out the noise so I can sleep. The sound I hear is like the static "shhhh" sound you used to hear late at night years ago when a TV station off programming at midnight. I have lost some degree of hearing in both ears from the tinnitus, but only because I have had it bilaterally every day for almost four decades. two of Dr. Shea's sons still run the clinic in Memphis if you ever wanted to consult them. There are a lot more treatment alternatives now than when I was there in 1979.
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Lindalou, I had one round of Carbo/Gemzar and it also made me ill. My MO dropped the Gemzar and I did Carbo alone. I hardly had any side effects except for low platelets. The Carbo was knocking the crap out of my disease, but had to take a break after 3 months to give my bone marrow a rest. I will be starting Verenzio next week. Ibrance only worked for me for 8 months, so I am a little nervous about this drug not working.
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Interesting to read the comments about vision changes. I’ve felt that mine is getting worse particularly in my right eye but didn’t know it could be related to the treatment. Good reminder that I need to make an exam appointment.
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I think I found a really good treatment for dry eyes, which many of our meds can cause. I put coconut oil in them last night and the improvment is amazing! I didn't use any drops at all today. I was looking up home remedies and apparently castor oil works even better. I ordered some from amazon as well as some small dropper bottles and empty mascara tubes because it's supposed to help your lashes grow. Using the coconut oil until it gets here on Wed. Only doing it at bedtime because everything is blurry but it felt good instantly.
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