Ibrance (Palbociclib)
Comments
-
Pat~ I have a call into my Onc for a consult and request for physical therapy of soft tissue! Thanks for the advice! Have a great day! ~M~
0 -
My doctor has recommended it, but I can't pay 3000 dollars co-pay. They are looking into ways to get it for me and the latest is to contact Fizer specifically. I haven't heard any news. I was curious about the spreadsheet.
0 -
Some thoughts on privacy - when I private message people I reply with my real first name, but I don't want my first name used on the public boards.
Some people don't care and sign their posts with their real names; however, unless you actually see someone using their real name on the public boards, it's best to refer to people by their monikers. I know a few people who are sensitive as I am about this but I also recognize it may not be obvious to everyone this is an issue.
In my case, I am slowly re-building my business which depends, among other things, on my reputation for being reliable. It's a tightrope walk as you can imagine, but I don't want my cancer public. I also don't like to talk about cancer with people who don't have cancer. Pointless ... too much to explain and largely unexplainable.
There has been no actual harm done to me or anyone that I am aware and we're all so close that the privacy issue is not obvious. Just trying to raise awareness ...
>Z<
Zarovka means lightbulb in Czech. Would have prefered something from the natural world, but it reminds me of a specific time in the Czech Republic in my 20's ... long before all of this.
0 -
shirl - the $$s likely a solvable problem. keep pulling the string. but if you don't get ibrance now, there will be some benefits in waiting to do CDK 4/6 inhibitors as a later treatment, IMO. Abemaciclib is looking a lot better ...
roll with it, don't worry too much about whether you get it now or not.
>Z<
0 -
Hi sorry to keep popping in when I have questions but I do just follow along now for support
the boards move so fast it's amazing.I am on my 4th round of ibrance and I have been having wonky liver enzyme numbers. Have been testing weekly for the past 3-4weeks. They were up then back to normal then now only my ALT is 200 (high is 42?).... all other numbers are normal. Doctor says, no way it's the ibrance. Any thoughts? Could it be the letrozole? I do take 1-2 pain pills a day that contain acetaminophen.
My last scan was in April and showed no progression. Bone mets only... anyone have similar experience? Doctor said they will order another scan if it continues but I am getting concerned.
0 -
Casun~ that amount of acetaminophen is no where near your daily recommended daily allowance, I take way more than that daily and I have had a very small tumor removed from my liver! I am pretty sure its not from that and I am not convinced that it is not the ibrance, I Think i remember on the billing packet, and reactions listings reports, Before I got sick and stopped working with them, there was mention Of rising liver enzymes, although it was a small percentage, it was recorded. I believe what usually happens is they monitor the blood weekly and if the numbers show consistent issues out two consecutive months, they will most likely, either , have you delay a few weeks to see if the break brings on improvement, and If you go back on to the medicine and it happens again , they will discuss lowering the doseage. That is what I remember reading for the protocol. Usually your body adjusts after a few cycles, you may just need a doseage to be lowered. The 100 and 75 mg report were also very strong, with very little differences. I wish you nothing but a speedy improvement. Please keep us posted when you are able. I will be sending prayers as well. Hugs ~M~
0 -
I just saw a commercial on facebook for Ibrance that will be coming to TV. The world will know that we exist!
0 -
whoa! A commercial on Facebook LOL.I can't wait to see that pop up in my feed. thanks for sharing.
Micmel - thanks I am hoping I get an answer soon or like you said maybe they propose a drop in dosage. the thing that is concerning, that I didn't mention before is, there is some new abdominal pain too. So this is why I have been searching/panicking 😊
Off the get more blood tests tomorrow!
0 -
I just saw an ad for Ibrance in the latest People magazine. Made me ill, actually. I feel it is being oversold.
>Z<
0 -
Pa: I have seen magazine ads for Ibrance for awhile here in California so I am not surprised it is coming to TV.
Casun: I have only had Ibrance and Letrozole for treatment in the 1 year since my diagnosis; no surgery and no other chemo. The several tumors that were on my liver are gone enough to make my surgeon wish she had taken a biopsy to prove their existance although they are clearly there in the original PET scans. I say that to tell you that in my case, my liver improved on Ibrance. I know it is different for everyone, but I wanted to send you some encouragement.
0 -
I saw the Ibrance ad on TV yesterday, I hated seeing it. I've been seeing an ad in the only magazine I get which is Southern Living. I hate that too. I just plain HATE THIS CANCER. I'm tired of feeling like crap and I know this is probably as good as it's going to get since I don't really have any pain from the cancer itself, for which I'm most grateful. The meds are what make me feel so awful but I guess I'm grateful to have them. It could be so much worse, I know. Sorry I just needed to vent. Now I'm dealing with dizziness and we need to fly across the country for a granddaughter's graduation and then come back and the next weekend drive six hours for a grandson's graduation. This past Saturday we drove five hours round trip for the third graduation and it rained the whole time. Not a fun day. And I feel like a terrible grandmother because I don't want to do any of this.
Praying for all of us here. Hugs to everyone.
0 -
I saw the television commercial tonight just two hours ago. And that looked like one healthy woman on that commercial. Me I have to relocate limbs to be able to walk some days. I wish I felt like that lady. But I sat there with my jaw dropped thinking wow. And that's As far as I got. First time I ever saw it. How weird is that, I log on and you guys are talking about it. After I thought about it, I would hope that by getting some more coverage, maybe MBC will get even more attention and it can lead to more competitive trials and more successful treatments for us faster. It's all I could hope from seeing that. The more awareness we get the better for more results!! I hope hope!!
casun. I honestly feel like everyday there is a new ache or pain. Usually though when I originally had my isolated liver met, before they cut it out , I could kinda tell it was there. It wasn't pain per say though, more of an uncomfortable unfamiliar feeling that just was always kind of there. Not something that waxes and wanes like all the other freaking pains I have. It will drive you mad. I'm sending power of strength for good blood results. I'll be looking for your follow up results ! Maybe they went down already! Hugs!! I know what you mean about worry. I wish I could take that worry away for you. I'm sorry that this all sucks. ~M~
Faith honey what you're feeling now is exhaustion plain and simple. When I don't rest like I should I get dizzy and feel nauseous and sick and way too tired to even move sometimes, I know how you feel I honestly do. I'm sending you hugs of strength for your up coming busy week, you're not a bad grandmother,by any means, you're a strong beautiful woman who is fighting this awful cancer the best she possibly can. I am so sorry that this is so hard on all of us. ~M~
0 -
Micmel, the lady in the commercial sure got out of bed fast! When I stagger out I can hardly walk from all the aches and pains!
0 -
Faith; you are not alone in this. My tumors may be gone, but I feel like crap like the rest of you. We just cancelled a trip to MO to visit my new grandson because my husband and I don't have the energy to travel through airports with my daughter and her 2-year old who was going with us. We settled on a road trip to Colorado to visit other family. Yes, cancer stinks!
0 -
and my eyes are so dry I have to feel my way to my eye drops because I can't see a thing until I pry them open with moisture ,as I sweat a storm and took an unwanted shower while sleeping some how. Those commercials annoy me now that I think about it. There is another one for nuelasta, and they speak of heavy chemo and getting that shot the day after and this is onpro,attached to the back of your arm. When I got my shot I was NOT smiling the day after I was writhing in agony with bone pains. Not to mention she hada full head of ponytailed hair. Really? I had zero hair! Zilch. Ugh! Advertising! Good night ladies. Rest well! ~M~
0 -
I guess they have to make these women look good or no one would watch. Who wants to see balding, wrinkly, age spots and the ever expanding waistline? The thing I hate most is how many young women are dealing with this and leaving young families behind. Life is just not fair for so many people. I've had a good life and if it weren't for my DH and kids, I'd say, I'm done with this. I know I'll probably feel better after some much needed rest but lots of days are just really hard and I've lost too many people to this damn disease.
Thanks for letting me vent and understanding how I feel. It's so good to have a safe place to come to.
Good nite dear friends, sleep well.
Faith
0 -
Just watched the AD and boy is Julie doing well. Working, runs with the dog, ...! I'm exhausted just watching her. I have had quite an exhausting few days - think probably because I have 'the cold' (I lived in Scotland when my boys were young and a cold was always called 'the' cold and we as family joke that there's only one to go around and compete to be the only one suffering) So I'm just off to have a swim - probably a very short one - but I'm gong because I am really trying to get some regular exercise and hope this will make me feel relaxed and sleep well.
As a brit expat I was amazed when I first came to California with all the ads for drugs and also found it strange they should be advising people to tell their doctors all the medicines they are taking - doesn't the doc know? I also found on my internet search for the Ibrance ad an article about a proposed ban on DTC (Direct to consumer) drug advertising (see link) Its from 2015 so no doubt this never got past the lobbyists!
Wishing everyone as few side effects as possible and successful treatments.
0 -
what type breastcancer do you have and when diagnosed.
0 -
so glad to hear about your liver! I too have a large tumor on one side of my liver and another on right. My breast is swelling again and the intense itching is horrible. I am taking Ibrance 125Mg and Femara. Been on it little over two weeks and I feel pretty good no nausea thank God. Keep me pos
0 -
Faith~ i understand, i will be 47 on Thursday And I never even worried about something like this happening . I was strong and athletic and ran like the wind six miles the day I was diagnosed, I did have a lump and that is how this nightmare began. I love my three kids dearly and my sweet DH is the unwavering love of my life and any other life for that matter. I feel the way you feel everyday just this flu like sickness that never leaves or ever feels better no matter how much we sleep or rest. You have the scans, get the results, question every and all pains. It's just really awful to deal with. I know everyone feels that way sometime or another. My daughter is 21,son is 20 and step son is 16. I wanted to retire with my sweet husband on a porch, in the mountains, in our rocking chairs watching our grandchildren play on our land. Now I think one of the chairs will be empty, and I truly hate that more than anything ever. Hearing of KD's passing sent me into a dark place today. Losing another wonderful woman to this awful disease. Louis and Her two precious sons. Doesn't seem fair at all. Nothing makes sense anymore. We can't go back and we don't know how to go forward. It's a terrible way to have to live. Or die... either way you choose to look at it. You ladies give me strength, when sometimes I find none. We have to go on together. And fight for everyday we can. We have no other choice. ~M~
0 -
I feel the same way, Z. I guard my medical privacy like a big dog. I never post directly about it on my FB page, although I know word has gotten around. My friends and family know that I have a "don't ask" policy; they know if I want to update them on something, I will. I don't want my illness to be a topic of conversation. If I bring it up, that's one thing, but I don't want anyone else doing so in public. I had a horrible experience last September when I was invited to a dinner party during (Jewish) High Holy Days. The hostess sat me across from another cancer patient she had introduced me to, so "you can talk about things." I said, "Why would I want to do that???" The other woman talked all during dinner about her tests etc. and prodded me loudly, but unsuccessfully, about specifics of my treatment in front of a table of people I barely knew.
I have always found well-meaning comments like, "Please join us if you're up to it" etc. grating and intrusive, especially as I'm stable and feeling fine.
0 -
Yes - most of us are more fit than the average american. The truth is that our situation is simply beyond anyone's comprehension if you aren't living it. Lonely in some respects, yet I have all these lovely friends. Terrifying yet the good things in my life are especially wonderful these days. I feel focused and intent on living each moment, except that sometimes I can't concentrate enough to read a web page.
No need to explain this to you guys. Thank you all.
>Z<
0 -
MO said swollen ankles and feet is not a side effect from Ibrance or Faslodex. She even looked it up while I was there. Faslodex can cause sciatica which I suffered with for over three weeks. She is keeping an eye on me for clots. Both feet and ankles were swollen so she really doesn't think it's a clot at this point. I did request a different nurse for my shots today after the last one got my sciatic nerve. I was in no way blaming her but they went and told her. I felt so bad.
0 -
Dianarose, Thanks for your response. Yes, my onc said it is not a direct se of the Ibrance, but happens with everything else that is going on, which is why she did not adjust the meds. The se of Ibrance are the blood clots which you are right to keep a watch for. My feet are not swollen at all but just my ankles and lower legs. They are improved some today.
The nurse hit something wrong when I received my last pneumonia shot. My arm hurt for 2 months! I am hesitant to have her give me another shot knowing it just happens sometimes, but I am thinking of saying something next time so she is extra careful.
0 -
I must say, I saw the Pfizer Ibrance commercial last night on the nightly news. I hope the general public realizes the woman is a healthy actor portraying a cancer patient AND they listen to the litany of side effects that we are dealing with - be it all or a few. It annoys me to no end. I thought the same thing to a degree with the commercial for Neulasta and the actor's full head of hair. But that I can almost see because there are lots of chemo protocols where you don't lose your hair. I wasn't that lucky the first time around or with ibrance/letrozole/xgeva protocol. OK I am done ranting. Have a great afternoon and evening ladies!0
-
Ibrance is kicking some cancer ass!!! My tumor marker had been in the 200's and after two cycles down to 103 😎
0 -
Hello Ladies,
I have questions about my bloodwork. I am on my 7th cycle of 125mg Ibrance with letrozole. 5th year of being metastatic. I did very well on Tamoxifen after chemo and radiation. My fatigue is getting worse and my PA just dx my bloodwork as macrocytosis which means I have enlarged red blood cells and she also feels I'm anemic based on low rbc and platelets . So much of my bloodwork is off a little . My Neutrophils are low but high enough for my next dose 1.2. She tested me for B-12 and Folate which seemed fine. She mentioned checking bone marrow at some point . Has anyone's bloodwork improved after awhile or have they had their marrow checked? My numbers have been going a little further off each time we check. Any thoughts would be greatly appreciated. Thank you.
0 -
Congrats Dianarose - So good to hear about some good news. This is some powerful stuff. Hoping your side effects are minimal too.
0 -
Dianarose, congratulations! Yay! I like hearing good news.
My bloodwork bounces up and down just a little each month, but the trend is pretty stable. It is just high enough to continue the Ibrance. I have been on for one year now.
0 -
teacher, I just got my labs back today after cycle 1 and my RDW is high too. My ANC is 1.2 like you so keeping at 125. I'll have to ask for B-12 and folate. What is your red blood count? Anyone else have high RDW but low most everything else?
0
