Ibrance (Palbociclib)
Comments
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Artist,
I can appreciate. Our visit there was in July. Very nice. Winters here in Kansas can be tough and we usually try to go to Florida for January-March, but missing this year because of me and my pain. Hoping for an escape next year
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Hello Ibrance Ladies,
I am on day 14 of round 2 of the Ibrance 75 mg and I saw my MO today as well. In round 1 my WBC was 1.75, up from .88 on the previous 100 mg round. Today my WBC is 1.17. significantly lower than I'd anticipated. MO said that she wouldn't take me off of Ibrance for now, but I have to go for more blood counts in 10 days while I'm on my break between cycles to see if my wbc count has rebounded enough to start the next round. I'm really bummed about this.
artist - I lived in South Lake Tahoe back in the mid 80's and it was gorgeous. Of course I was much younger and definitely healthier.
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Kaption, I've never been anywhere East past Colorado but would love to see that part of the country. I have a girlfriend in Iowa I'm hoping to go see some day soon. Jazzy, I LOVE Salem! Went to a wedding there about 10 years ago. Oregon in general is beautiful as well. You probably wouldn't recognize South lake any more as they have just built casino after casino.....But it's a great place to go see a concert!
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artist - I know you're right about Tahoe being very different. Change is the one thing we can count on. When I left there in 1986, there were only 4 casino's. I worked at Harrah's for 5 years. I've also lived in Las Vegas for a total of 15 years and DO NOT miss it. I absolutely love it here in Salem.
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Hi everyone, i know many of you from way back, i'ts so nice to see you here. Romansma, Deanna, Patty, Ellelou some of the name I see here.
I could use some advice/input -so my daugther Dani (as many of you know)very young just 31, she has extensive bone mets throughout her whole skeleton, incl skull pushing into the Dura, I saw this weeks Pet/CT/MRI and it looks like a Christmas tree. (This state is beeen going on for over a yr) She was on a 6 cocktail chemo for 3 mos, so it's stable in a sense that after looking like a run away train the scans are the same as 3 mos before, but the TM's are gradually inching up, so Onco and us decided it's time to move on, because we really need to get some of that tumor load down.
She is Er+PR+HER2+ (she used to be HER2- then biopsy Jan 15 showed the change), she tried almost everything, it's been like 4 yrs, but it's getting more and more aggressive, progressive. She tried last yr all the good stuff H/P abraxane, then Kadcyla, it does not work. As of now, she is scheduled to start Ibrance/Letrozole this Monday the 11th.
My concern is first : she is HER2+ I know Ibrance is specifically guided for women with Her2- I called Pfizer, they said they don't have any studies for Her2+, but doctors do use things off label, so how many of you are Her2+ because when I read the threads in Stage lV almost all that are on it are Negative, so if you could tell me how is that working for you.
Also, what's the usual for the Nadir, on the WBC?? She has plans to go away w her fam away for a few days on the 24th, would that not be the week she would feel the worst? And is it then the norm for the WBC to go low? Because I might speak w Onco and maybe he should continue the other tx, (which also could bring down her WBC, but....)and then skip the wk that she will be away, and start when she comes back bcs what's the idea of her feeling sleepy weak or scared of being in a multitude and then ruin that week. How can you all advise me?? I need to call him soon if we are to change the schedule.
And the mixture will be Letrozole not Femara.
I started reading the thread to be able to comment also, but I need this info asap, and then I ill get back to the read.
Thank you so much,
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Hi Momallthetime, Letrozole is the generic name for Femara. Most of us take the generic Letrozole I believe, even when our signatures say Femara. This combo seems to affect people differently although it's supposed to have few SEs. FWIW--My WBC dropped at first and is now back up. I felt some fatigue but not bad. I've stayed on the 125mg and never taken any time off.
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Hey Elle thx sweetie, so nice to hear from you. I am so freaked out due to her upcoming vacay, I would hate for her not too feel well just then. So if I cold ask you when is your down with this mixture? If she starts on the 11th, and she will be away on the 24th. Thanks
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Hi ladies,
I have been on Ibrance 75 mg/Faslodex for a few cycle, I've lost count of how many, and am due to get MRI/CAT scan results today to see if it's been helping. My TMs have gone down modestly since I started, so not sure what to think, but pain levels are increasing.
Monika and Stefajoy congrats!! So happy to hear of a positive response to Ibrance!
Momall- good luck with the Ibrance for Dani, I really hope it helps her and moves those TMs back down. I am Her 2- so I have no further advice. My WBCs did tank during the first week of Ibrance and tend to stay low throughout the whole cycle.
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Momall, my fatigue is the worst the last half of the third week on Ibrance and usually extends to the first couple of days in my week off. But, it really hasn't stopped me from doing anything (except this past month when I also had 12 radiation treatments- but that wasn't the Ibrance)
Cjanet, I'll be interested to hear about your results because I've had new pain the past 2 months (all bone). My scan showed a small amount of progression. maybe changing treatment in February. Not sure yet. I've been on 125 since June 1.Prayers for good results for you!!
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First of all, Congratulations Monika! that is amazing news.
I saw the oncologist yesterday. The doctor didn't know that the insurance had denied the use of Ibrance, but when I went back to the infusion room for my Zometa, the nurse said she had already sent an appeal to the insurance co. She said she has already sent letters for 3 other patients, and she added a "guilt inducing paragraph" at the end saying the denial would affect the survival of this patient, etc. She went right to the phone and called to check on the progress. When she came back she had a bottle of Ibrance that she gave to me! She then went back and asked the doctor if they could do Faslodex today without insurance approval and he said " yes, and if it is denied, we will just eat the cost!". So, yesterday I had the Faslodex shots and this morning I started on the Ibrance. This was a real answer to prayer, and I am so thankful!
Thank you all for your advice on the cost of the Ibrance. The parity law is interesting, I will definitely check into that. I have BC/BS federal employee plan and will also have Medicare next month. I will look at that website right now!
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Lindatwo,
I like how your onc's office works! Great news.0 -
Momallthetime, I would agree with Kaption about the timing of the fatigue. I think it also probably depends on Dani's current energy level. Mine was pretty good to start with (I'm 59). I just took care of an 18 month old for a week by myself and survived.
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Momallthetime, I concur with kaption and Ellelou, my fatigue was the worst the third week in and a couple of days on the break. Sometimes I tend to think it was the Letrozole not the Ibrance. My WBC went down but hovered around 3 which was pretty OK and I was on the full dose.
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MomATT, I can't speak for others, but for me, the low energy w/Ibrance is nothing compared to the fatigue I had with TC chemo after my first dx. With Ibrance, it's more like some days I just can't seem to get going to get things done, so I piddle the day away and then realize -- oh, it's the Ibrance! It's more like a lack of energy or a general malaise -- but not that bone deep fatigue of chemo -- at least not for me. Since Dani has been doing chemo, I think she may even find Ibrance much easier.
As far as WBCs, my UCLA onc goes by the granulocytes. They must be at least 1000 to restart the next cycle. Mine have been around 800 on Day 28 -- too low to start -- so I usually wait 4 or 5 days, since that's what it took my first cycle for my grans to come back up to 1100. Last month, I got sick and my onc told me not to restart until I was better, and to check my counts before I did. So I decided to wait until my next Faslodex shots (a total of 16 days) so that I didn't need to go in and get blood drawn an extra time. But that time (and I was still sniffling and congested), my grans were at 3100! So I'm curious to see how low they dip after this cycle, since they were higher than previous cycles to start.
You had also asked me on another thread why I've started taking my Ibrance earlier in the day, and the reason is I had a couple of nights of bad insomnia earlier in the week, and I just felt like the Ibrance -- which I was taking quite late -- might be a contributor. So I'm now taking it in the afternoon. Surprisingly, there seems to be a benefit re. the horrible bloating and gas I was having. It's hasn't been nearly as bad. Deanna
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Yes I am still going to CTCA . I transferred to the Atlanta location since it is closer. Love it! I also have an onco locally that flushes my port, labs and monitors me on the Ibrance and gives my Faslodex and Xgeva injections.
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Kaption, Yes, I really like my MO and the nurses are all wonderful. Artist, I live about 30 miles east of Reno and that is where my MO's office is. Just wondering what city you go to for treatment.
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Linda, I am in Lake Tahoe but am considering looking up someone at Renown just for someone else to bounce my questions off of. Kaption, I never answered your question about which med was failing. Apparently she decided it was the Letrozole causing the liver enzymes to elevate. First I stopped the Ibrance for a week and the enzymes weren't coming down fast enough. So then she stopped the Letrozole so I was on nothing for over 3 weeks (yikes). But my enzymes did come down pretty far in that time. Then she started me on Faslodex and said to resume the Ibrance as well. In my mind we might have wanted to start the Faslodex first and test the enzymes before putting the Ibrance back in the mix just to see if the enzymes started creeping back up. Because if they do now we won't know for sure which one is causing it again??!! I just hope that is not the case as I am feeling pretty well right now. Just pray it doing some magic! Will find out tomorrow what my labs say and get the second dose of Faslodex.
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anybody get hit with a huge payment this month because of a deductible? CVS Caremark wants 4K from me. That'll more than cover my deductible for the entire year.... But OUCH
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Thanks to everyone for writing here! I've just started the ibrance/Femara protocol 4 nights ago. I've been especially interested in when the toughest fatigue days are. I can adjust my work schedule a bit to accommodate, but just a bit. Has anyone had any experience with using aerobic exercise to "fight the fatigue" or does it seem best to respect it and get more rest?
So far, the only symptoms I've had are a bit of low-grade nausea and some diarrhea.
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Stephajoy, I will get hit hard as well because my first thing to happen this year will be meds. My deductible is $6450 which ironically is about the same as what they charge my insurance for Ibrance!! Ouch is right. I just paid off all of last years bills.....Game on, I don't know what line of work you are in but i was pretty OK to work even with major fatique. It was more of a bone tired sluggish fatigue. Just before my 3 week was over on Ibrance hit the hardest and I ma not sure if I could've done much aerobics! Had no N or D though...
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Thanks, artist. I also like to make changes one at a time.
Game on,I have not done aerobics, but I did some pretty rigorous walking and yoga before my new pain set in mid November. Exercising felt good when I could do it. But I'm also sure you need to listen to your body and know when to rest.
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game on, I find the fatigue on Ibrance is pretty low level. Nothing like chemo fatigue. I'm sure everybody is different, but maybe don't take your daily pull until after work each day.
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Monika, good news indeed. Enjoy!
Tina
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Stefanie and Artist...Did your respective pharmcies sign you up for that additional savings plan directly from Pfizer? Forget the name and am in LA tonite (UCLA appts tomorrow), and on my phone... But look back a few pages and it's mentioned. Should take your co-pays way down.
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Deanna I literally had to print out what you wrote so I could study it. Thank you, thank you. so to understand about the BT, PA told me that Dani would have BT drawn every wk, she could do it in a lab nearby her home, instead of traveling to their place it's more like an hr and half each way. So if it's low on let's say a Monday, how soon after would she have to go to get blood drawn again, she'd have to go back 2 - 3 days later? Is that what you do? And the granulocytes you mean like easophils, all of those?
Artistatheart- Kaption - Ellelou really thanks so much in giving your input. So if i count right, it looks like she would be back on the 3rd wk,(she is starting tomorrow, going away the 24th) and even if she feels a little sluggish she will be in her own terrain.
You guys gave me a goldmine of information. Although it's still a toss up what time of the day it's best to take it, at nt or lunch time. She could use a good nights' sleep because she is up early in the AM for the little ones to go to school.
Cristina hope they give you good news on the scans results.
Lindatwo boy you prayed well. You know, doctors are of course important, but really the way the whole office staff helps you along is priceless, I had to be in touch with the office like 5 times on Friday to get the pills, the prescriptions for the BT, and even though they are paid for that, a little smile(over the phone), kindness, patience is everything.
Onco still wants to use an Immunotherapy injection into a lesion that is visible from the outside in the sternum area. I have to do my homework on that. I'll see if there is a thread for that over here alos, I would like him to biopsy it, so it's another conversation I have to have with him. He probably dreads my calls, I try to be direct but he knows I ask questions
Warm hugs
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I don't see an Ibrance 2016 (Palbociclib) topic, so adding to last years' topic.
Here's an interesting response to extending indications for the drug:
Release on cancer drug reaches to (as yet) unwarranted heights
Warm healing wishes for all, Stephanie
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This is an article about Pfizer raising drug prices http://www.nbcnews.com/business/business-news/pfiz...
I am in the Pfizer copay assistance program. My MO (prescription nurse) and Specialty Pharmacy Express Scripts signed me up. I did nothing. Anyway, I believe you have to have insurance already to qualify. My normal copay for this drug would be--not really sure--85. to 280. a month. So only paying 10 bucks is pretty great.
Here is a link to the program http://www.ibrance.com/getting-ibrance#financial-a...
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Kaption, todays appointment update is that my enzymes went up again! So my Onc and I both decided to stop the Ibrance again and see what happens. I was also getting the rapid heart beat back pretty bad last night. We went ahead with the 2nd loading dose of Faslodex which so far has been fine. Just pray those enzymes come straight back down! She says they haven't really seen this SE from this drug but she is now suspicious. Me too. It feels good to be on the same page with her. If they still stay elevated I go in for another liver biopsy, not terrible but not fun either....
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Artist, I certainly hope they get your treatment figured out. I also hope you don't have to have a liver biopsy. I pray your enzymes behave and you get the response you need!
The rapid heartbeat is interesting since I've had that with a new high blood pressure med my pcp has had me on. I see him tomorrow.
Also, am I correct in thinking some people just take Faslodex? I know there is a discussion board for that, but I haven't read it carefully yet.
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I too am dealing with the first of the year deductibles. Not sure how much I will get hit yet on meds though. We met our out of pocket maximum in July of last year so haven't had to pay for anything since then. I was kind of dreading the beginning of the year for that reason.
Has anyone lost their hair on Ibrance? I just finished Abraxane infusions and went three weeks with no treatment. My hair has started to grow again and I have SIX eyelashes!! Yes, they are just tiny stubbles, but still........So now I am reading in the Ibrance side effects that hair loss is a side effect. NO!!
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