Ibrance (Palbociclib)
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Tumor markers up third month in a row on Ibrance. Going to have a PET and an MRI. He said even if the scans don't show progression, he would still take me off because in his experience, which he has a lot of, markers moving up means treatment not working. So, I guess I'm out. I'll go lurk on the Xeloda thread and see what goodies are in store for me.
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Darn. (Insert stronger word.) I'm sorry to hear that, Stefanie. Let us know.
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VLT, there are people who are getting the Ibrance with femara, even though they have had femara in the past, and more and more are getting the Ibrance alongside Faslodex. I was NED for 5 years on Faslodex alone, so it can do some good things if you are a "responder." The NCI centers seem to be getting the approvals based on the most recent research. Have you considered having a "consulting" oncologist at the hospital 2.5 hrs away? This seems to be more and more common for people who do not live near a major center.
Stef, the words that came out of my mouth might get me banned. I am really disappointed for you.
Still processing my own oncologist appointment from this afternoon. Will post more later.
*susan*
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Christina good luck on Ibrance/Femara. Praying that you have a great response and minimal side effects,
Stefanie so disappointed that your TMs are going up and you are off Ibrance. It seems so random whether it works or does not work. I had Xeloda and its really not that bad. The dosage can be adjusted if the hand/foot issues become a problem. Please keep us posted.
VLT I was on Femara with NED for almost five years. So far the Ibrance/Femara is keeping my stable. My onc felt that the addition of the Ibrance could trigger the Femara to work again since I had such a positive response in the past. My onc has also told me that when the Femara stops working, Ibrance/Faslodex is next.
Have a great day everyone.0 -
Hi, ladies... For those of you on Faslodex + Ibrance, I have a question... I started Faslodex 2 days ago. I was able to get my Ibrance RX sooner than expected, so picked that up yesterday, but haven't started it yet. So my question is... Do I need to start Ibrance the same day of the month I start Faslodex so that the labs they do on the day I get Faslodex will reflect what's going on with Ibrance as well? I don't know whether I should start Ibrance right away -- even though it will two or three or more days off from my Faslodex regimen, or if I'm overthinking it. I emailed my UCLA onc's PA, but haven't heard back yet. My local onc had said earlier that waiting even a few weeks to start the Ibrance was fine (when we anticipated a delay in insurance approval that didn't happen). But I'm confused about the possible need to coordinate both meds cycles.
I also have a raging headache today, I'm guessing from the Faslodex, so it would be nice to let that simmer down before I add Ibrance.
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Deanna,
You just can't get away from me today, ha ha! Was going to mention this on the other thread, but trying to make my posts less long and boring.
When I talked to my mo yesterday, she told me not to start taking the Ibrance until the next visit when I get my Faslodex and Xgeva shots. I believe this was to help coordinate blood work and treatments as I know she mentioned more frequent blood work once I start Ibrance. I will be getting my pills next week and start on August 18th.
Talked to the specialty pharmacy just now. Sounds like my co-pay for Ibrance will be $80, and a discount card from Pfizer will bring it down to $10 a month! I am so pleased and amazed.
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stefajoy
My bc tumor markers also went up 3 mos in a row but started to go down the 4 th month on Ibrance/Femara. My MO felt that I should give it more time after the 3 mos since, from her experience with Ibrance, it can take a little longer " to kick in" I wasn't happy to wait but now that my markers are going down maybe she was right? Possibly discuss this with your MO. My MO was involved in the clinical trials with Ibrance at MSKCC. I'm certainly not sure what the right answer is!!!!
Babs
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Deanna.
I'm going to start Ibrance tomorrow if it came in the mail today. And I got my shot Wed, like you. My butt is still sore. No raging headache from the Faslodex. Had that the day of and day after the shot. I am going to take it with dinner tomorrow night likely. I'm nervous.
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That's good news Babs. This treatment can absolutely take a bit longer. Can't, congrats on starting. Don't worry too much on the Ibrance, it's pretty easy on you. Just take it with food, for sure. Biggest issue is a few weeks in the blood counts go down so you get tired. Really hope it works!
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dlb, I start each new cycle of Ibrance the day I have my Faslodex shot, after the doctor visit and shot. It certainly simplifies things. I only go in once between cycles to have blood work this way. Otherwise, I would have to go in an additional time for Ibrance blood work. Also, so many people, including me, have needed to lower doses (usually early on). Having the combined Faslodex/Ibrance 4-week doctor visit before I start the next cycle of Ibrance has allowed me to eliminate going in to the doctor to consult on Ibrance between cycles. Also, it is much easier to remember to start the new cycle after the 7-day break this way.
Good luck on the new med!
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This thread has been very informative. I have been lurking on this site for a while and I was looking for others who have been undergoing a similar treatment to my own.
Today I am starting week 3 of Ibrance and last Monday I had my second cycle of Faslodex injections. So far my bloodwork is fine and I have experienced minimal side effects.
Thank you for sharing your experiences.
edit 8/19 I spoke too soon: day 1 week 2 cycle 1 I got a horrible rash on my hands, very similar to poison oak. It lasted about 5 days and it was awful. I used .1% prescription Triamcinolone cream and it helped.
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Babs, thank you for that advice! I was thinking that three months maybe wasn't long enough to tell, but its scary when you are gambling with your life. He just didn't like the direction of the markers which, btw, are relatively low (but outside of normal) anyway. So I am going to wait and see what my PET and MRI say next week. If there is no progression showing, I may talk to him about waiting one more month. You gave me the boost of confidence to try that.
I saw Sandilee over on the Xeloda thread, so if I do end up over there, I'll already have a friend there.
Stefanie
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Welcome Pup-pen! Glad to hear you are doing well with your treatments
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Has anyone had swelling while on Ibrance? This drug is really easy on my body but I now have swelling in the leg and arm, all on the side of surgery but that was 4 years ago. Dr ordered compression stockings which helped but now arm is swelling and if not better will order compression sleeve. Just wondering if this is a side effect or just my body?
Happy news and congratulations for all those getting results from Ibrance. I will have a scan done Thursday to see if Ibrance is working. TM came down but Dr doesn't rely on just TM.
Praying for those looking for other treatments and those having side effects. Be strong.
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Thanks for the input about starting Ibrance two days after my first Faslodex shots. After hearing back from my UCLA onc's PA (she was in favor of starting it now) and thinking about it and talking to my DH, I just popped my first $550 pill ever. (I still can't wrap my head around the cost of this stuff!) So I'm technically 2 days behind my Faslodex schedule this month, but I think it will be okay. If necessary, I'll delay one or move one or the other up a day in the near future so that they eventually start on the same day of the month, which admittedly will be easier to keep track of and ensure that labs fall on the optimal day for both. But the bottom line is, my TMs were up almost another 50 pts. in less than a month, and I just didn't want to go at it halfway when I was fortunate enough to get the Ibrance so quickly.
Editing to add a question: I noticed in the information print out from UCLA, there is mention of bleeding more easily. I take a lot of nutritional supplements, including some that increase bleeding, such as Vitamin E and curcumin. Has anyone's onc cautioned against taking these or any other supplements?
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Hello fellow Ibrancers! I have been following this thread off and on since my official diagnosis in May of this year with Stage IV Invasive Lobular Breast CA with mets to spine. There was not even a palpable mass in my breast, only a very miniscule, less than 5 mm spot, on my left breast new since last Mammo! Well darn it! No initiation period with Stage II or III even! Right to Stage IV for me! This is scary stuff. I just started my 3rd cycle of Ibrance after taking 3 weeks off for my Neutrophil counts to improve. I started on 125 mg and had to stop at 2 weeks. Then went to 100 mg and went all 3 weeks, but the Neutrophil count tanked at the end. So 3 weeks later my count was high enough to start the 75 mg dose. I am so scared that I will not be able to keep my Neutrophil count up high enough to stay on this drug. I am reaching out for help from anyone in this community to see if you have suggestions for keeping the Neutrophil counts up. Supplements, treatments, anything? I am desperate! I so much want this drug to work so I have some good time left with my family. Thank you for anything you can share.
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That sounds like a good plan, Stefanie.
Capinva, if your swelling is lymphedema, you should be seen as soon as possible.
ComingUpRoses, welcome. Remember that you still have the hormonal therapy working for you, too.
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dlb, I stopped taking baby aspirin when I started Ibrance due to the increased bleeding side effect. I still take turmeric and fish oil. Now that the aspirin is stopped, I no longer notice any increased bruising.
Quick note on random side effects:
I think Stefajoy mentioned swelling of lower eyelids a while back. I too developed puffy eyes - both upper and lower eyelids. It is annoying but tolerable.
I also noticed I can go days without washing my hair and it doesn't look greasy. So odd!
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Deanna you have inspired me to start tonight during dinner. Please let me know how you are feeling today! I got the pills yesterday but chickened out last night.
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Babs, would you mind giving me the name of your MO?
Any other ladies out there with tumor markers that kept rising until after the third month on Ibrance and then they stated going down?
Stefanie
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Stef
I just sent you. a PM
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Hi Stef, I'm going for scans next week so I don't know really what's going on, but my markers went up 3 months in a row, too, before going down a little bit (I even put the graph on my blog, lol!). I should know more after the CT scan, but the down tick made me happy with all the trouble I've been having with the white blood cells.
Wishing you some good news with it!
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ok. I have a question. It's probably been answered before but I can't handle all of the scrolling back.
Is anyone super fatigued on an OFF week? I'm day three off and I don't want to move and I'm so tired but can't sleep (of course). Is this possibly a normal pattern?
It's probably still better than Xeloda so hopefully my scans this week will be good enough that he'll let me try it one more month.
I'm supposed to make dinner but I really don't want to. I made DH order in yesterday. I'm a bad wife.
Soo sleeeepy.
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Stef,
Why yes. I am beaten on my off week. In fact, I feel slightly pummeled on the on weeks as well. I am working hard to maintain my regular schedule, but it feels harder and harder. My oncologist thinks that my body will adjust as each month passes and has suggested that I wait to make any decisions about my "career." I think you have been on this drug longer than I have though, so perhaps this is a warning to me.
*susan*
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Susan,I just finished my third cycle. Most of the time I am not as fatigued as I was during the first cycle . I generally have lower energy than I used to, but it's not horrible.
I have a scan on Monday and I took a xanax the last two nights because I'm anxious. Maybe I'm having a Xanax hangover
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I think I feel a little better during the first week, after the break. But overall, I am more tired now (cycle five) than I was a few months ago, even though my dose got lowered. I used to feel like I was running on 70% power, but lately it feels like 50%. But I'm willing to stay on it.
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Definetly very fatigued, I can fall asleep during commercials then wake up for the show. Don't know if it is the Ibrance, new pain med w/o acetaminophen (no increase in dosage) or depression. Just started on cymbalta, we see how that does. I don't recognize much difference from the on weeks vs. off week. I am anemic, don't know if that matters.
This drug is not a walk in the park, good day to all....Myra
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I also feel better during the first week, after the break. Will take the last pill of cycle 4 tonight and am pretty fatigued. My onc says the combination of Femara and Ibrance is a recipe for fatigue since both meds cause this. Other then that, I feel very well. I think I am adjusting as the months go on...bring on cycle 5!
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I'm another one who doesn't feel that great during the first week off but better the second week after (I've mostly had multi week breaks while waiting for my counts to go up, so the second week thing may be more closely related to that). I think for some of us, it just takes a little longer for those blood cells to bounce back.
Also, I'm on my Ipad and can't scroll back well to see previous posts (sorry!) but someone was asking about swelling? I've had lymphedema for a couple of years, but I've definitely noticed it being worse since starting the letrozole/Ibrance. Not sure which is doing it, but I think it must be one of them!
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Hi,
Just started the Ibrance last night. When might I notice the fatigue building? In a week? 2 weeks? a few days? next cycle?
Thanks!!
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