Ibrance (Palbociclib)
Comments
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Good morning ladies,
This is my first post and I'm just figuring out how things work. From what I have been reading, you are all so amazing and strong so I hope I can keep up.
I will begin Faslodex and Ibrance on March 21 as a second line treatment. I have been in a clinical trial for the past 2+ years with Femara and Afinitor and responded very well, but have now progressed. So far mets are only in bones, but extensive (skull, back, ribs, sternum, pelvis, all proximal long bones, mid-femur and knee). Surprisingly not in horrible pain - have only needed tylenol or advil so far. I'm nervous about starting new treatment, but reading all the posts has helped. And I'm always looking for information.
I will try to keep up with all of you.
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Mary (hilltop49)-
I just started Faslodex and Ibrance in late February and early March. We can learn this together. So far, I have had no side effects.
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Welcome Mary! Great group of ladies here, tons of tips and support! I also have extensive widespread bone mets. Ibrance has been like a miracle drug for me. Wishing you much success on your new treatment!
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I'll be interested in your progress JoynerL and glad to hear no side effects. I have heard that it's pretty well tolerated.
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Lynnwood1960 I'm hoping it will be a miracle for me, too! Are you having any significant pain related to the bones? Any fractures?
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Hello,
I live in the Uk and am newly dx Stage 4. Does anybody know if Ibrance is available in UK?
Liz
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Jjackboo: Sadly, and with regret I think ibrance is not yet available in the U.K. See this link: https://www.nice.org.uk/news/article/breast-cancer...
I am hoping that with the new similar drugs e.g. RIbociclib being developed the costs for this treatment will come down. Progress is so frustratingly slow sometimes
Best wishes from a British expat
Sarah
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Hilltop, when my mets were discovered they found that I had a rib fracture that was in the process of healing. My bone mets are extensive and widespread but the only pain I ever had was in my left arm. The pain has gone away since starting treatment with only occasional twinges. My main pain now is joint and muscle pain which I feel is directly related to the Letrazole.
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Had to leave the house at 6:30 to be at the cancer center for 7:45. Mornings are my tough time of the day with anxiety. DH dropped me off st the door and when I got inside I had a bad panic attack. Felt dizzy and thought I was going to pass out. Sat in a chair in the hall until DH came in. It was terrible. The good news is my platelets went up to 136. MO still had me do one more round of A/C . Was bummed out with that. My mouth, tongue and throat are so dry I am having trouble eating. If things look good she will start me on Ibrance and Fasldex Thursday. The shots sound painful. Can anyone tell me what to expect with the shots. She said it's two a week for three weeks then once a month. I am excited to start but terrified st the same time. I must sound like I am crazy 😜. When I asked her how long before she would do scans she wasn't excited about doing them. She said my scans really don't show us any information and that my blood tells her more. Part of me was ok with that due to scan phobia but another part of me wants to know if it shows improvement. Just so confused. She did know that PPI's can interfere with Ibrance. Said she was going to ask pharmacist if taking them 12 hours before Ibrance would make a difference
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Dianarose, the onc office scared me to death on the shots, and they're NOT BAD (at least not for me). The trick is a good nurse who warms the shots well before giving and gives them slowly. Warm them yourself for a while, if you're not sure (under your arms works well). Don't be frightened. My fanny was sore (but not terribly so) for two days. Piece of cake. You can do this!!
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Dianarose,
So happy your platelets went up! Mine were 139 today, so very close to yours.
I agree with JoynerL. The Faslodex shots have been OK for me too - really not bad. My behind is quite sore for a few days starting the night that I get the shots, but manageable pain. I seem to compare every treatment to IV chemo I've had in the past, so Faslodex shots are just fine with me! I also feel fatigue, which could be the Ibrance, so I make sure just to rest when I need to.
I had my second loading dose of Faslodex today. I am doing two a week starting Day 0, then Day 14 (which was today), and then Day 28. 2 shots per month after that. I am really praying this protocol works for me, as it is by far the most manageable I've been on. Having BC spread to my stomach, I seem to have nausea with almost every regimen except this one. Yea for Ibrance & Faslodex!0 -
DianaRose - the type of cancer you have (ILC) doesn't generally show up well in scans. We have exceptions on this forum (Shetland) but if your doctors says no scans, that is why.
I am so glad your platelets are up and your ibrance is scheduled. I am also glad you got A/C today. I know the panic attack as I have a medical phobia. You are very brave to soldier through these treatments as many would give up. The payoff is coming ...
>Z<
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Southern, my friend on Ibrance had her BC stomach tumor reduced by 63% after 8 (maybe 9) cycles! I pray your results will be every bit as spectacular!
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DianaRose, your courage impresses us all. We are in a big circle around you awaiting your start on Ibrance. We expect great things!
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Southern- my mets are in my tummy too. I have nausea every morning. Once I can get past it and eat something it get better.
Thanks for all the kind words and encouragement everyone . Makes me feel so not alone on this crazy ride. Any advice on do's and don'ts when starting the Ibrance
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Southern- I meant to ask you what a loading dose was. Is it a smaller dose to work up to a full one
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Dianarose, I completely understand the panic attack. I had one at home the day I had an appointment with the cardiologist. I also have cardiomyopathy, hence the need to see him. His office is connected to the hospital so I told my husband lets go there and if I'm having a problem they can just take me to the ER. I walked in there shaking and could hardly talk. They put me in a wheelchair and took me back to an exam room where things started to calm down as they did an EKG. Knock wood but that was the last one I've had in a year.
I'm so happy to hear your platelets are going up, that's great news. Regarding the Faslodex shots, I'm not on them but I watch that thread because I imagine I will be eventually. At the top of the thread are lots of hints and good information on getting the shots and avoiding pain. Being well hydrated and walking around for awhile to get things moving are a couple I remember in addition to warming the shots.
As Z has said, "the payoff is coming", hang in there.
Z, have you started the lower 100mg dose yet? I'm anxious to hear if you notice any improvement right away. I'm on day 17 of this 15th cycle and this fatigue and muscle aches are awful this week even though I'm exercising more.
Welcome Mary/hilltop and any others I've missed. I'm sorry you have to be here but you will find lots of good information and help. This thread moves fast sometimes so I'm sorry if I've missed welcoming any of you.
Have a great weekend and Happy St. Patty's day to our Irish friends.
Faith (in the future)
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Dianarose, I called it a loading dose as they build you up quickly prior to what I consider the normal/maintenance schedule. So we get 6 shots total in 4 weeks (2 shots each on Day 0, 14, and 28) and then 2 shots every 4 weeks thereafter. Dosage is the same in each shot but have the shots more often at the beginning of this protocol. That may not be the right terminology, but that's what I heard when it was explained to me. Also, nausea is so difficult and has been so wearing for me. That's why I am very pleased to finally not have that side effect on the Ibrance and Faslodex- at least so far.
PatgMc - thanks for your encouragement. I would love to have the same great response to this as your friend did. I do have ILC, so not specifically a tumor that can be measured. It would be great to see a reduction in my TM bloodwork though, as it has always been an accurate predictor of my cancer activity.
All - enjoy reading this thread as you are all so full of great information. I don't post much here, but I am reading each post and try to stay caught up as best I can. Hope everyone has a great weekend with minimal, painless SEs. Welcome to all newbies too!0 -
Your journey sounds very similar to mine, Lynnwood1960. My mets were discovered with a small pathologic fracture in my pelvis which caused pain, but the rest of the areas weren't painful except for some mild headaches (multiple lesions in skull). Receiving Xgeva and starting treatment with Afinitor and Femara really gave me a new lease on life for a while. I, too, have joint/muscle aches due to the Femara, but now switching to Faslodex so not sure if that will continue.
Thanks for the warm welcome everyone. Hoping all of you have a good week with any and all appointments and tests.
Hugs to all. Mary
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Southern- thanks for explaining that to me.
Lobular is strange. I too don't have any sizeable tumors it was once explained to me that it's like someone sprinkled pepper everywhere. Like a dam army.
I hate steroids. I am so dam tired but wide awake if that makes any sense
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Girlfriends, I have some advice that can totally interrupt a panic attack. Many years ago I had a gut wrenching time with anxiety and clinical depression. Fortunately, I saw a psychologist and learned how to overcome it without medication. One terrific thing I learned was how to apply Rational Emotive Behavioral Therapy to my life. Then I learned something amazing...Laughter Yoga! Here's a website that will show you techniques to start right this minute that can change everything for you! http://www.laughteronlineuniversity.com/laughter-w...
I've been to several conferences where this is the star of the show, where research is presented to show proof that it works. I hope you'll give it a try. I've been teaching it to my 13 year old granddaughter so she can use it before math tests! I know it helps relieve scanxiety!
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Faith - As you know, I decided to drop my Ibrance dose from 125mg to 100mg (even though my neutrophils levels are almost normal - around 1.6-1.8 - by the time I restart my cycle). I have burning scalp, fatigue, rashes, nausea all of which could be from Ibrance.
I switched in mid cycle, as soon as FEDEX delivered the 100mg bottle, last Friday. I've been on 100mg since last Friday. I am hesitant to report because I've only been on this regime a short time, but I am very hopeful. My scalp is not burning, the rash is subsiding and I feel a bit more alert, a bit more energy even though I in the third week of the Ibrance cycle.
I am hopeful that a full cycle on 100mg brings additional improvement, but I'll take even the bit of improvement I have gotten so far.
I know there is a layer of side effects from letrozol - muscle and joint pain and fatigue - that I just have to soldier through. But it will be great to dial the SE's down a bit.
I get this itchy rash below my belly button... between my navel and my petutie. I am scratching in meetings... it's weird. It needs to stop.
>Z<
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Z....Ha! We must come to BCO to find out we have "petuties"! Thanks for the laugh tonight!
I can't wait for you to see how good you feel after a full month on 100mg! Fatigue and just mild itching sometimes on my ankles. All good with the petutie!
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Oh, Dianarose, did nobody stop to help while you were waiting for your husband? Hooray for the much-improved platelet count! Let's see Ibrance and Faslodex kick some ILC butt, now. Many women don't mind the shots much. For me, yes I have some pain, but I'm sure it's nothing compared to some of the other stuff you have been through, like that nephrostomy tube--may it soon be a thing of the past. My onc says Faslodex has the fewest side effects of the anti-estrogens.
Hilltop49/Mary, I can tell you that having switched from letrozole/Femara to Faslodex, I find that the joint aches and stiffness have gone away. How interesting that you were on a trial of Femara with Afinitor. There is also a trial of Faslodex with Afinitor. (I have just started that combo based on successful results reported in December.) It looks like just as Ibrance is being combined with various anti-estrogen drugs, so will Afinitor, which used to go with Aromasin only.
Micmel, I'm sorry to hear you have to deal with lymphedema and flare along with everything else. I'd like to say that you show such a kind and lovely spirit, and I really appreciate your contribution this BCO community.
Z, I think you will notice a big difference on 100. Stop that scratching.
Pat, a friend has invited me to try laughing yoga. I'm gonna give it a try.
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Good morning to all. I'm not sure whether to post this question here or on the Newly Metastasized Stage IV site, so I think that I'll do both. I have asked my onc at VCU in Richmond VA for a referral for a second opinion. (My original IIA BC from 1990 has shown up in the bones after 26 years, extensive but limited to bone [ER+ 40%, PR-, Her2-], and I've been started on loading dose of Faslodex and 125mg Ibrance).
She suggested any of these NIC centers for a second opinion. I have no idea where I should best ask to be referred. Any guidance??
Memorial Sloan Kettering in NY,
Dana Farber in Boston,
UNC at Chapel Hill,
Duke in Durham.
Johns Hopkins in Baltimore
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You can't go wrong at any NCI center. Access is the issue. This becomes a long term relationship since you will go there every time you have a crisis. You need it to be easy because these will be tough times. Which one's are easiest and cheapest to get to. Do you have support at any of those locations (family), a place to stay to make it cheaper?
Access to the right doctor is also an issue. I went to Seattle to get a second opinion and the doctor I saw was less useful, shall we say. I have to keep looking but I've done very well on Ibrance so I have put it off ...
On this trip you are looking for someone to get you through this long term. In this first visit, frankly, the questions you bring are the easiest. You are on Ibrance, and they are unlikely to change your treatment because that is the best first line drug we have right now. What you are really doing is interviewing someone to help with the job gets tougher. So if you don't like them, get a third opinion and a fourth until the doctor impresses you. You want to be established with a second opinion doctor that you trust. And you want to do it now because it's a pain in the a$, and if you have a crisis you will not have the time or focus to get this done.
>Z<
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I went to Dana Farber for a second opinion and found it to be a waste of time. Found out he spoke to my MO at the time prior to me going and just agreed with him Nit what I was looking for . I wanted a fresh new opinion of his own . It might have ended up the same anyway but was already planted from MO
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Faith, As I read through your message I came to realize that we seem to be on the same path. I am 78 and my cancer was discovered in 1987. No positive nodes. I chose not to take tamox... 28 years later the cancer returned in my lungs. I've been keeping stable on arimidex, Faslodex, and now ibrance plus letrozole. Tamox is still a possibility since I did not take it in1987. So nice to meet you here, but so very sorry we have to be here. I might be the oldest one in the group, so don't feel alone. I will be starting my 3rd round on Monday and will scan after that. Hoping for good result after progression on Faslodex. Hugs, Nanc
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Shetland~. The feeling is very mutual. There are some strong, special warriors here and I am so honored to be apart of all of this, because I understand how everyday is hard, and emotional, and physical and there is nothing we can do. Every word written here are our stories as a group. I just want them to be VERY LONG STORIES 🙌❤️️~. Bless you all!
~M~
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thanks everyone for the Ibrance comments. Think my last month's shortness of breath was an anxiety attack. Had that when I entered menopause. Guess it makes sense as the estrogen gets out of m body. Had 2 weeks off due to the mouth sores and low white blood cells. A week to go on the second month and feeling pretty good.
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