Ibrance (Palbociclib)
Comments
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msnar,
I hope your doing the ibranc e happy dance. Congrats on getting to NED!
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Cure-ious, while I believe everyone has a right to tell her story as she has lived it, I've always disliked books like this. In fact, I wrote the Support to Go Unbooks because, at the time, we had a library in the Flying Colors Center and there were far too many books full of fear. I just couldn't put them in the hands of the newly diagnosed.
I won't go into all the reasons this one makes me crazy based on the review alone but I'll leave this one on the shelf.
Forgive me for being so outspoken. It's just me.
Love from PatGMcNuts
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PatgMc, it isn't just you.
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Karenfizedbo 15- Interesting. "stress related neuralgia". Never heard of it. Definitely stressed. But does not hurt. No pain. Just feels like goosebumps on one side of the face with kind of a drawing up sensation. No pain.
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Thanks Cure-ious for posting the book review. I read an excerpt of it in the New Yorker. While it is dark, I thought the author did an excellent job of depicting what it is like for some to go through breast cancer treatment. It helped me to better understand some of the women on this board. I haven't yet had to be on AC-I'm not sure I ever will but the author writes about how deeply the drug affected her emotionally.
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hello my friends and good morning!
How is everyone doing/feeling today?
I had a neck MRI on Tuesday to see how the cervical Mets are doing and make sure no nerves are being compressed. The results came back with everything looking about the same and a couple spots where the tracer was taken up a little more.
The last time they looked at my tumor markers was in 2017 when I was first diagnosed in May and the result was 207 U/mL. They then looked at them again in June and they went down to 182 U/mL.
So our next step is to recheck tumor markers with my next blood draw next week.
I am feeling well and pretty energetic and Pat your words are always in my mind about staying optimistic. I think the optimism has truly settled in for me and I am so appreciative of that!!!!
Hugs and love to all,
Philly
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Good morning! I am having cataract surgery next Wednesday, September 18, (they just called) so for those of you who have had it done while taking Ibrance is there anything I need to be aware of? I am scheduled for a ct and bone scan the next week September 25, so hoping I can still have those - anyone have thoughts on this? I will be checking with my MO, but it is still early in the morning here and the questions are teeming thru my brain
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Pat I made ..I guess...the mistake weeks ago or over a month or 2 ago of watching this show on Netflix (cant remember the name now but it was the womans first name) about this sweet christian woman she was married to a pastor. She had stage 4 breast cancer. It followed her until the end...omgosh I thought it would help me be able to accept what the statistics say ...ya know that I have only a 30% chance to live 5 years. I figured it might help me with acceptance and seeing how another Christian handled it. It didnt. It just made my husband really upset and made me feel even worse. So I try to avoid those types of books or movies now.
Truthfully the only thing that makes me have hope or feel better is coming here and talking or venting to you all. That's the truth.
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Janky, I had both eyes done last Oct. I didn't do anything different in relation to I/L. The first anesthesiologist wouldn't use my port (even though it was accessed) but the second said he would have if I had it accessed (which it wasn't because of the first one). I had a really good tech who got the IV started in one go. What I did NOT know (and should have) was that the replacement lens can be either for close or distance vision. (They have really expensive ones for both.) I originally went to my eye doctor for distance so they gave me distance. It's ok and my close vision is not that bad. My vision changed again after I got new glasses after the surgeries. I may be buying yet another pair of glasses. Overall, my vision is way better after the surgeries. I read and use my computer now without glasses. Sorry, that's WAY more than you asked. PM me with any questions.
Cure-ious, Pat, etc. I WILL be getting that book. I find it illogical to be angry with cancer. My anger has to be directed at people, institutions, systems; things that can be influenced and possibly changed. Pat, how are you feeling about The Unwinding of the Miracle? Kind of in the same category but different.
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Nicole;
As Pat said try to be optimistic. When I was first diagnosed in 2004 the statistics then said that I only had a 9% chance for 5 year survival and here I am. I suspect this is because herceptin had just become available and the old statistics were just that....old and out of date. This also applies to us now.
God bless
Cathy
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Well, being "off-the-charts" optimistic by nature, nobody's books will affect my attitude, but to the extent that talented wordsmiths work to convey the anger and urgency of the situation, I'm all for it!
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Seaway..yes I agree to that now..thanks to other women on here steering me away from the those statistics and telling me they are not entirely accurate. However at the time I watched that show I was still thinking that was going to be me.
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Hi there!
Has anyone had any eye issues with Ibrance?
I've been on one 21-day cycle of it and I've gotten this pretty-much-continuously flashing/flickering floater-thing in my left eye. Just curious if eye issues were at all a side effect that anyone else has experienced.
Thanks!
AM
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Hi AnneMarie, I have some dry eye and blurry vision but it’s my norm. However I just reviewed Ibrance literature and it does say to contact your onc if you have vision changes. Don’t want to be an alarmist but better safe than sorry. I would consider calling the company or pharmacist too. It’s not like a sore muscle, your peepers are so important ....we want to see and enjoy everyday of life without one more hindrance.
Keep us up on what you find !
Praying for wisdom!😉
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Hi AnnMarie. Shortly after I started on Ibrance/Faslodex (but also a time of extreme stress) I had what is called an ocular migraine. It was for me an arc in my field of vision, that looked like shattered glass, but also had a flickering element. It started more in my left eye, but I could see the arc in both eyes. I had experienced one other event like this one, about a year earlier. This time I went to the ER and they did a CT scan that showed nothing going on in the brain and indeed it was deemed an ocular migraine. When I called my Mom, I found a genetic link--one of my Aunts also have them. However the ocular migraines are usually specific events, lasting 30 minutes to an hour. Definitely something for you to discuss, but the floaters and flickering in the field of vision are what I experience with those migraines.
Hope you get an answer!!
All the best.
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Ann Marie I have dry eye on it a bit especially at night and I have much blurrier vision. I did go to an ophthalmologist about it wound up getting prescription readers and prescription distance now (which to me really look the same even when I do not wear them....) But I wanted to be careful so i did go to the Opthmologist the actual exam was under $200.00 it was the glasses that were so much.....
Edited to add in: I have also had eye twitch..it was bad first month on Ibrance I was on 125mg then I dose reduced to 100mg then it kind of went away and now is just around periodically.
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Ann Marie- yes I’ve had flickering in the corner of my eye first 6 months of I/L. When I told my MO he sent me for an eye exam that day. I was told I had dry eye from my medication/aging dry eye was causing retraction that instigated flickering when moving my eyeballs back and forth. Mine was most obvious when transitioning from lite to dark rooms. He said common for people in late 40/50. But if I experienced a curtain like effect in my eye to contact them immediately. He ordered drops for dry and like all other ibrance SE it comes and goes. Not experiencing flickering anymore. Mostly blurred vision when reading lots.
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I do get blurrier than usual vision (I have bad eyesight already), especially if I read a lot. I think it's definitely from the Ibrance. I need to get back to the eye doctor soon to see if I need a new prescription.
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Janky, you may have to stop your medication a few days before your procedure. I think the following week for your scans should be fine, but of course ask your MO all your questions.
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Just to weigh in here -- I was on letrozole for 13 years prior to my current Ibrance/faslodex stint. My eyes, on letrozole, got increasingly worse, and I actually had to have cataract surgery in my early 60s, probably earlier than most people (can't remember exactly when). My ophthalmologist told me that he had had other patients whose eyesight deteriorated on letrozole/femara, and cause them to have to have cataract surgery earlier than usually expected. I also did some research and found and same info.
So it may not be the Ibrance here, folks -- it may be the letrozole.
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Jaycee, I've been getting donation paintings ready for a show so I haven't had any reading time but the book is right here on my table.
If anyone is interested in buying art work at auction this is a benefit for the Center for Good Grief and Memphis' Hospice House.
Nicole, I'm sorry the movie made you sad but I'm glad it didn't help you accept what the statistics say! For one thing the statistics are old by the time they reach the Internet. For another, they have nothing to do with you. God knew how many days you had before you got here and he didn't mix your number up with all the others and pull one! I was talking to a man years ago whose wife had just received a tough diagnosis. I told him what I just told you about my disdain for statistics and he started to laugh. He actually once taught a class at the University of Mississippi called "How to Manipulate Statistics"!
Let's only be manipulated by hope, realizing that anyone can die on any particular day but we don't have to start the dying until that day. Today we live! There's nothing unrealistic about that. Being grim and dreading death is not going to do anything good for us. I, personally, choose to be a statistic of one because God's eye is on me! And his eye is on all of you.
My breast cancer first came in 1994 before there was all this cancer info on the Internet. The only person I knew who had been diagnosed with cancer was my mother who had Malignant Melanoma and was told she would die in 2 months. She did die in 2 months so that was kind of my expectation. It was not a realistic expectation but I picked out my funeral songs! Thankfully, I haven't wasted these 25 years waiting to go. (I did waste time picking out those songs because I've decided not to have a funeral! That's a discussion for another day but I know how much my husband would dislike being the center of attention at my funeral so I've made my plans not to have one known. I'm going to be cremated and sprinkled in the park where I've played with my daughter and granddaughter. No eulogies. No hearses. Just lunch with family and, hopefully, laughter.)
Please don't think I'm wagging a "Be positive" finger at anyone. I don't believe a person should feel guilty about having a sad thought nor think she's going to die because she isn't positive enough. I just believe in giving yourself moments to grieve while trying to focus on good and true things. If I get too sad for too long I always come back to the fact that I wouldn't trade places with a perfectly healthy person and swap my family and others I love for theirs!
And Cure-ious, you are one who helps me remain optimistic about being cured of MBC! Thank you for everything you do here to lift us up. My comment about the book is in no way a criticism of you for recommending it or the author for writing it. Her comments about Adriamyacin and Cytoxin, which were the standard of care during my years at Flying Colors, reminded me of holding frightened women in my arms as they dreaded taking it.
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Anne-Marie, I had forgotten I had that flashy-floater thing for months and it went away. I also had a twitch for a while and my eyes are definitely drier. Ah, the Ibrance Dance! Hope you're better soon.
Love from PatGMcWordy
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All- PLEASE CHECK OUT THIS THREAD ASAP
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JayCee, Jacksie and everyone else - My MO has me off the Ibrance now (1 week prior to surgery) and then the next 10 days after, so basically I will just start a new cycle early October.
candy - thank you for the link to lita, she has been a mainstay for many of us here.
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Pat you are so awesome. Your post was great. You also always make everyone feel better. There have been times I have felt so defeated and you just gave me examples of people that have Liver mets and such and to have hope and to remember that I am ME and that everyone's body is different and reacts differently.
Cure-ious I too, 2nd what Pat said about how you remain optimistic and you also have made me be hopeful many times so thank you!!!
Bev, yea a lot of times we are all realizing things are not the Ibrance..but instead are the Letrozole.
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NicoleRod/Pat completely agree with everything you just posted!! This is a place we can come and find hope, strength and companions that understand....priceless at this time in lif💞
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Ann Marie, I also have drier eyes and occasional flickering. I also have had two ocular migraines where one eye goes completely blind for about two minutes during the flashing, etc. Scared the heck out of me thinking it was a TIA so I called the emergency number first since my eyesight came back fine. They sent me to the opthomalogist and after a lengthy exam he told me my eyes are very healthy with no cataracts or other problems, and recommended the over the counter eye drops (the more expensive type like Systane) when they feel dry or things get blurry. They really help. It is worth a trip to the eye doc for peace of mind or for him/her to make sure everything is really ok.
I had lunch today with a 32 year BC mastectomy survivor. She is my idol! Of course she had Stage I vs my Stage IV but the fear and pain is the same. She is still NEAD after all this time and her doctors can't believe it even doing several biopsies a couple of months ago to make sure. Her only problem (although not small for anyone) is lymphedema in one arm which she keeps under control with a sleeve. I say that to send hope to all of us.
I choose to focus on positive stories and people. We Ibrance dancers are blazing new territory and I am proud to be a part of this group. You all give me hope and support.
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This is a weird turn of events which those who have lost hair on Ibrance will find amusing. They're studying the use of CDK 4/6 Inhibitors to prevent hair loss during chemo treatment using taxanes.
https://www.manchester.ac.uk/discover/news/scienti...
I'm not buying stock for sure. I just don't see this being successful, nice as it would be.
Love from PatGMc
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I found that excerpt of The Dying in The New Yorker magazine that Chicagoan mentioned. I will probably not read the rest. Just not my kind of book. It is very philosophical? I don't know how else to describe it. I don't mind the negativity but I like stories. This is not really a story like The Unwinding of the Miracle. I did learn something, though, from the portion of The Dying I read. Chemotherapy drugs are really bad for the environment. They get emptied out of us and into the water system. Toxic.
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posted by Kanga roo on the Kisqali thread -- applies to us too:
ISSUE: FDA is warning that Ibrance (palbociclib), Kisqali (ribociclib), and Verzenio(abemaciclib) used to treat some patients with advanced breast cancers may cause rare but severe inflammation of the lungs. FDA has approved new warnings about this risk to the prescribing information and Patient Package Insert for the entire class of these cyclin-dependent kinase 4/6 (CDK 4/6) inhibitor medicines. The overall benefit of CDK 4/6 inhibitors is still greater than the risks when used as prescribed.
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