Ibrance (Palbociclib)
Comments
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hi I just started Ibrance this week. I'm new to stage IV and this is the first thing we're doing with Letrozole.
Didn't realize this drug is like chemo or its SEs are.
I'm getting anxious, easily annoyed, tired.
Are any of you ladies working? I just got back to work from my first dx in 2014 but I really like it and don't want to just stay home and feel like I'm just waiting to end.
D
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Carol/Maltese, I have the tender scalp, too! I thought this was left over from the taxol hair loss. Do you think yours is from Ibrance and not chemo? If the wind blows my hair, it hurts. Also, it is thinning. Is your hair thinning?
Zarovka, keytruda is a new development that I will ask my onc about if/when she says I need a treatment change. The current plan would be faslodex, probably without Ibrance because "there is no data to support continuing it." I totally get your feeling. I am also sick and tired of being sick and tired. A small, irrational part of me would have been happy to switch to faslodex and get off Ibrance this month, even though it would have been because of progression. I know I am actually well off in the stage iv world, but wow. Really, this is my life now, and I am to be thankful for it. It makes me think of Elizabeth Bennet's line in the Pride and Prejudice movie (not bothering to check if it is a quote from the book), about her sister Lydia being made to marry the wicked Mr. Wickham after running away with him: "He is such a man. And yet they must marry."
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Hello, dancingdiva, and welcome to the thread. When were you diagnosed stage iv? That diagnosis alone will make a person anxious, annoyed, and tired. Were you on letrozole for a while before starting Ibrance?
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I was originally dx in2014 and did it all. The bc was on the left.This yr they found it on the right axillary nodes and right internal mammary nodes. I had pet scan and ct scans indicating no other tumor so they're treating this as a spread. Welcome to stage IV! Even though there was no organs or bones involved, they're treating it as spread.
So I think I'm handling this pretty well. Maybe too well. I knew this would happen just was hoping for a few more yrs. broke down a few times but basically I keep on chugging. I have 2 small kids so there's no time.
Let and Ibrance are new. I was on let for a week not feeling much. I've been on Ibrance for a few days and feeling antsy like my blood is boiling, felt the same on chemo but worse. Just lying here in bed with all these new aches and I know it's the drugs and I can't seem to relax . I'm getting scared reading these stories gonna admit.
I'm rambling.
DD
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Hi Shetland- I have not had chemo in 19 years so this is a SE of Ibrance with the tender scalp and hair thinning . I think the letrzole adds to it as well I notice if I go wash my hair when it is sore it helps. There is a FB Ibrance group and a very common SE of this is reported by many.
Carol
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Dancingdiva, all of us here understand how you are feeling right now. Hang in there, I went from extensive widespread bone mets to NED after 13 cycles of Ibrance/Letrazole. I work full time as a nurse. Feel pretty well, some fatigure and aches and pains but live my life as usual. Many advances in cancer treatment on the horizon. It's my new normal, not what I ever thought I would go through but I'll do whatever I have to to stay alive
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Dancingdiva, many of us do find that exercise helps with both the stress/mood and the achiness. It helps mind and body. Are you a dancer?
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dancingdiva, I'm so sorry you find yourself here in stage 4 land but this is a good place to vent and get some answers. My MBC came back after 25 years after I thought I was home free and everything you are feelng is normal. No one wants to be here or do this. I think that in the beginning of this return, I went through all the classics stages of grief, denial, anger, etc and finally acceptance that gave me a fighting spirit to beat this thing if at all possible. There are many women here who are working full time and while I have the luxury of being retired, I'm still very active and involved in lots of things. The advice to exercise is something that you should try to do even if all you want to do is stay in bed and cry. I can't tell you how much it has improved the fatigue I feel and more importantly the depression I was feeling. You need to do things for yourself so that you will have the strength that you will need to fight this battle. Have some fun, exercise, socialize with friends and try to find some sunshine everyday. It's amazing what a difference it makes. Ok, I'm done preaching now but you can do this.:)
I'm just finishing my 6th cycle of Ibrance/let. and the SE's were much easier this time and I believe it's the exercise and sunshine that has helped. It was a long dreary winter here in No. Illinois. I found out my cancer returned the second of January and there went our planned month in Florida and sunshine.
Faith (in the future)
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Back on Ibrance starting my 6th cycle after having mouth sores, fatigue, headache, nausea on my week off ... and I feel much better back on the Ibrance. It's the second time I felt bad on my week off and better when I got back on Ibrance. Maybe its just a delay in clearing the stuff from my system. Anyway, I just wanted to put that out there. I was freaked out when I felt bad on my week off. I had imagined I would not get a break from feeling bad and really felt depressed. But it appears I get my break a week late.
Feeling much better today. Biked and hiked with my kids today in the Valles Caldera. I live on the side of a 13 mile wide volcano. (Dormant thank god) How cool is that.
Welcome Dancing - I am so glad you have a job you enjoy. These are the things that keep us going. Don't give that up unless you have no choice!
Consistent, daily exercise even when I feel terrible (actually especially when I feel terrible) has transformed my mood and reduced symptoms. Mentally, its hard to see myself as sick after completing 200 jumping jacks or doing military presses.
That said I have to adjust my routine to where I am. I used to run a lot. I still get my aerobics in, but it's more like short sprints, a steep hike or a few sets of jumping jacks. It's no longer about beating my personal best and totally about maintaining my health and clearing the toxins and metabolites from the system. Yes this is chemo. It's on the mild end of the scale but there is a lot of crud in your system.
That said, there a whole range of symptoms that occur only as your body adjusts to the letrozole, which is also an adjustment to zero estrogen. I had the (irrational) anxiety and irritability during that period but it is gone now. So that can pass. Also, don't assume the symptoms are Ibrance as the letrozol is a powerful drug. Finally Ibrance symptoms do recede with time for many people.
Let us know how you are doing.
>Z<
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Dancing, I just have to add a PS. to my sermon, don't forget the power of prayer. There were many dark days for me when this first returned and I can honestly say that I believe it was the prayers of so many of my family and friends that got me through and are still helping me, sometimes I will be feeling really down and then just all of a sudden in the next moment, I feel better for no reason at all, so it must be the spirit lifting me up. I can't explain it any other way. And, be sure to keep dancing!
<Z> I also believe it's the Letrozole that causes so many of our side effects b/c the week I'm off the Ibrance, I still feel lots of weird things. I'm wondering if there is another AI that our bodies would adjust to better. I met a woman with MBC who stopped the let. and went on aromasin with Ibrance because of the joint pain and she says the pain is much better. I asked my MO about it briefly but he said they are all the same. I might press him further on my next visit. I also wonder if the actual brand name product Femara would be better but of course, try getting insurance to approve that one.
Faith (in the future)
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Faith -
Many people, including I believe Deanna, use a non-medical approach rather than AI's like letrozole to reduce or eliminate estrogen. For example, very low BMI, if you can pull it off, reduces estrogen because fat cells produce estrogen. Combine that with some other tricks and you don't need letrozole.
Your doctor may feel that all AI's are the same because the low estrogen (IOW the intended effect of all AI's) can probably explain most of the SE's he sees. However, for many people it is clearly the letrozol causing the problems and they just won't take the stuff.
Since the AI's are so commonly part of Stage I to III breast cancer the discussion of non-medical alternatives to AI's is active in other forums like the complementary and alternative forum. I need a couple more good scans before I make any major changes to my protocol, but if I hope to get to a point where I can consider other ways to keep my estrogen low.
The good thing about playing with the hormone suppression piece of my treatment is that I can always measure the estradiol to make sure whatever experiment I am trying is working.
>Z<
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Hello...this is my first post. I started 125mg Ibrance/faslodex on June 1, by 6/11 I was in the hospital with a fever and a huge drop in all my counts. They stopped the chemo to give my body a chance to recover. I started again on 6/24 @ 75 mg, and so far not bad - fatigue & diarrhea.
I discovered my liver was covered in tumors in Nov. (Not worked since) We were in survival mode until March when my TM and scans started to improve. Hopefully this will continue with this drug combo. Best of luck to us all.
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Retz - welcome.
if you update your diagnosis and treatment protocol in your profile AND make it public, we'll have better context to respond. it is a good sign that you are doing so well at 75mg. at least two people on this thread are on 75mg for 14 days with 14 days off. some people seem to be very sensitive to ibrance in the sense that they probably get the same effective dose (blood plasma level) from a lower oral dose.
we're all interested in how you do
>Z<.
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Z, regarding the week off: I feel best the latter part of my week off and the first week on.
Hello, Retz. Welcome.
Hey, look, I just reached 1000 posts!
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Z, my experience with Ibrance has been all over the place. First cycle was a piece of cake and during that cycle I had a rod insertion so go figure. I'm no expert on this but if I could share a quick log I would say that my body is clueless in telling me that numbers have tanked. I can associate my worst symptoms the week following my xgeva shot. I know my calcium drops because I have gotten eye twitches and a corner mouth twitch exactly 5-6 days after shot. This has happenened twice and both times my numbers were not within range to continue. I'm on a 2 week off from 2 week on 75. On Monday my neuts were .86 by Friday .60 so the drug works on week off for me.
Yesterday I had a hard day. The twitch was making me neurotic But today I took a nice walk maybe 2 miles and decided I'm getting my weight down to where I fall better with my BMI. I'm vegan but I'm going to add in fish and something else. Not read meat.
I also wanted you to know when I go back on Ibrance I always feel more energy the first week.
I am praying to complete a cycle with 2 weeks off and stay stable. My TM are not reliable as of yet with showing new disease.
Carol0 -
Carol - Kudos pulling out of a hard day. Fantastic walk. Looking forward to hearing good results from 2 on, 2 off.
I have a really hard time mentally when the side effects kick in. Thanks everyone for your support. After a bad week, my wellbeing seems to be on an upswing along with my mood.
Scans at the end of July after cycle 6. Dundadundun ...
>Z<
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Zarovka...thanks...now I'm public
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Z, thanks for the heads up on looking at the other forums for other ways of doing estrogen reduction. Like you, I'm going to wait for a couple more good scans before changing anything. I had a great response after only three rounds and MO suggested waiting till Sept. Before doing another scan which is fine with me. The less scans the better. Like Shetland pony said, I also feel better during the end of my week off and the first week back on. We will be going on vacation and I will take a two week break then. I'm really anxious to see how I feel. I don't know what normal feels like anymore. My MO even said it would be ok to stop a day or two earlier before we leave, so that I start to feel good. He seems to have a relaxed attitude about it, which is good for me.
Fait
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hi Retz, I'm new too.
Shetland that was funny about the 1000 entries😃
d
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HI Shetland,
Do u have shetland ponies?. I used to a shetland a loooong time ago when my parents bought me my first pony.
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Bad day today!! I just finished my first week on cycle 7! So far I have had a great response to the meds as per my scan, so Im not complaining.... just wanted to vent a little and ask for suggestions.
I feel very very weak and I feel faint when I'm on my feet. I could not do anything today, but stay in bed. It was all I could do to get up and go to the bathroom. I have never had any pain....just debilitating fatigue. The muscles in my arms and legs get that weak burning feeling when I move them just a little. I have been taking Vitamin B12 as well as a multi vitamin, but they have not given me anymore energy. I know these drugs are cumulative and I didn't have the fatigue this bad cycle 1-5. I wonder if maybe I need a small break? Does anyone else have that weak dizzy feeling when they move around? This is starting to be rough!
Any suggestions ladies?
Robin
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Robin - First - I am sorry you are going through this.
Whatever exercise you can get will move toxins and metabolites of the drug through your system. When I get hit with fatigue like that, I do exercise in short and gentle bursts. Three 15 minute walks a day or something like that. If things go really well, I do jumping jacks and sit ups for 15 minutes. I might try to add some jogging bursts to my walk. It's exercise as medicine, not really for fitness. The point is to get your lymph and blood moving to clear whatever hit you. I am sure that is the last thing on earth you wanted to hear, but it works for me.
The fatigue is a vicious cycle because you end up sitting around, which causes the crud to build up more in your system, which causes more fatigue ... The good thing is that it doesn't take much movement to be very helpful.
That said, take care to look beyond the Ibrance. Somewhere in my second cycle I got a nasty urinary tract infection and I did not know it. I've never had one in my life until I got on this protocol. I blamed Ibrance until one of my conscientious doctors took a urine sample. It was a major contributor to my fatigue and side effects. I am not saying you have a UTI. But do you have allergies? A lingering cold. Any sickness on top of this protocol will knock you out. I am suspicious it is not the ibrance because you are getting this fatigue in your first week, which should be a good week.
Finally, I did take a break after cycle four. I took an extra week off. Just got to be too much. Sometimes the drug and the side effects are simply too much. It is something to discuss with your oncologist.
>Z<
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Thanks Z! I am not sick or have not been sick with a cold in years. I have allergies from time to time but not bad. I will take your advice and try to move. We have a trampoline...so maybe just bounce a little. I know my iron is low but have been warned to not take iron supplements. I am on Faslodex, Letrozole, Ibrance and Xgeva. I am going to have my estradiol level tested next week and then I am going to drop the Letrozole for a month. I will retest my estradiol levels again after the month off Letrozole and if it is the same...I'm dropping the Letrozole. I can save it for another time!
Robin
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Trampolines are an awesome way to get a quick medicinal dose of exercise. Off for a hike ...
>Z<
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Carol my onc told me that he sees most people's counts go down but they nevber had an infection yet. They thought it was strange.
To everyone, I walk for exercise but if I run or do anything bouncy it hurts my butt where I got the fas shots, even though it doesn't really feel sore anymore.
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HLB, I just experienced the same thing in the injection site. It is not sore or does not hurt, but I ran into a store to get out of the rain...and both injection sites were sore as I ran. Weird....
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Robin! Checking in from round #7 Ibrance 125+ fas shots. My nodule in left lung is gone. Next PET is in August after I return from Spain/Portugal cruise - flying biz class and wearing support stockings helps. I just returned from a business trip to Turkey - at airport 2 hours before bombers - yikes. However it was my week off and I felt fine. I extended Ibrance "vacation" one day to finish work in Istanbul/Antalya and flew home July 2nd. I am still working full time ladies and walking a lot. Z is right, stay active as it really helps. Also I am nearly a vegetarian and take biotin daily. For newbies - I lost a lot of hair by round #2 , so I'm wearing a hair halo which really works. Pam - I will be a booth girl again in November. Hope you all are doing well! As for current SE's; mouth sores gone, fatigue is the baddy + hair loss.
Claire
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Question.... I got my first set of tumor marker results: 20.8 (June 9, 2016)
The blood draw technician gave them to me after I asked about them. I have yet to review them with my oncologist. This is a baseline. Unfortunately I don't know what this number means. Can anyone help? And also, what do the tumor marker results exactly tell us? How MUCH cancer is in us? Is the cancer growing? I'm so confused.... I assume we want this number staying the same or decreasing, correct?
TIA!
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Eelder, did you get ca27-29 or the other one? I think it's ca 15. Anyway, I was told anything under 37 is normal. When I was in remission for 8 years before mets they were always 24-30. When mets were found they had gone to 51, which is what prompted the scan to look for mets. Now that I am no TX for mets the normal "good" seems to be 30-33. When they start going up we know cancer is growing. For some people their normal might be 11-15, and so 24 would be cause to look for something, even though for me that was normal. Then there are also many people for whom the test doesn't work at all. For example numbers gioing down when ovious mets show on the scan etc. Mine have always worked well as far as letting me know when something is going on, so I started out not gettin many scans al long as they stayed in the range and I didn't have symptoms. Aftter you get a few more you will be able to tell better how they work for you.
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Lalady,
Happy to hear of your great results!!! My first scan after taking Ibrance showed all lung mets disappearing or gone with little or no SUV activity! My next scan is in August and I would love to be NED!!! But will be happy as long as there is no increased activity. Has your hair started to slow down with shedding? My shedding started at about cycle 5 and now that I am in cycle 7....it seems to be coming out more..ugh! I had very thick hair to begin with, so it is not noticeable to others...but to me....I have lost a lot! I still have my clip in extensions from when I lost a lot of hair with chemo. I went through the brutal process of cold caps to save my hair and now this!! It is very frustrating, but I am so happy the Ibrance is working. I know I would rather have thin hair and NED, than thick hair and the alternative.
How scary about being in the airport in Turkey just 2 hours before bombing!!! Perhaps a angel looking after you? I'm so glad that you are ok!
Robin
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