Ibrance (Palbociclib)
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Uh, yeah! I added too many 0s. Make that $9800! I will check on the card. My ins does not allow for the specialty pharmacy mail in to my home. But, I can deal with that.
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Hi all, wow this thread has been busy! Thank you so much for the info on the conference, I will definetly be listening☎️☎️☎️.
This weekend has been wonderful. DIL and DS are here and we had my DILs baby shower. Happily beyond belief, I was there, well, and able to enjoy every fabulous moment. Had it at a country club so there was minimal muss and fuss by me. They did all the cooking, cleaning up and serving. I know it was a splurge, but worth every dime in terms of health.
Sandilee, I know how frustrating it is to wait to restart! I have done it also, but as my RN told me while I was bitterly complaining: what good is a dead patient taking Ibrance? In her callous way, she is correct, try to stay calm and take your supplements.
To all dealing with TMs: UGH! Mine have been up and down like the Ibrance roller coaster we are on. Hold on to your hats, hopefully it will be a long ride.
That's all for now....Enjoy your BBQs and swimming pools and whatever wonderful things life has to offer. Myra.
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Hi everyone, hope you all had a nice weekend.
I am checking in to see if anyone has had nausea at night (early morning) on the Ibrance/letrozole combo - I don't think it's connected to the Ibrance because it feels like reflux, just checking to make sure, since I've gotten sick 3 or 4 times on the combo?
I have had very bad reflux/heartburn ever since my first radiation several years ago and was on Prilosec but stopped it with the Ibrance (now taking Zantac at night, and tums). I got sick on 5-21 around 4 in the morning, and again early this morning (5-26) at 4 a.m. Don't want to gross people out, but on 5-21 I was sort of alarmed since it was bright red and looked like blood (however, I had watermelon the night before, and the Ibrance pill is red, so maybe those 2 things contributed to the redness, but it really was bright red (blood color), so it scared me since I never had that before). The nurse said she thinks it is unrelated to the cancer (maybe bleeding ulcer?) and to go to the emergency room if it happened again. This morning at 4 a.m. I got sick again, but no red, thank God, so no emergency room. I took the Ibrance later in the afternoon yesterday (usually take it around noon). I did have a cup of tea last night which I usually avoid, so maybe that aggravated things.
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Holly, so very sorry you're experiencing this! It must be difficult, too, to try to eat in such a way as to not get heartburn, and then to try to fit your meds in with all that. I can imagine how alarming your symptoms must be.
I haven't had any heartburn or other problems when I took the combo, or Letrozole alone, except the occasional headache. I hope this can pass soon for you. It's unfortunate that you can't take your usual for heartburn, as the Zantac doesn't seem to be working too well for you. Have you explored causes unrelated to cancer with another specialist? It's a nuisance because we are in the doc's office so much already, but it might give you some relief if they could find the cause, or at least prescribe something that works more consistently that is also suitable to use with the Ibrance.
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Thanks, Sandilee, I figured it was not the Ibrance but since nausea is listed as a possible SE, I thought I'd see if anyone else experienced it. I have not had the headaches except once or twice (probably unrelated for me, but yours does sound like a SE so I hope you are also getting relief). People react so differently, it is great to have this sharing of info (thank you again Romansma for starting this!)
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Holly I did have very slight nauseau when I took the Ibrance in the morning. So I started taking with dinner and have not really had any problems since. Also I have not had any acid reflux since on Ibrance/Femara. Strange but I did have on my prior treatment, but that seems to have stopped. When I first started on Ibrance I had some slight headaches, but haven't had since the second cycle.
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Holly, hope you are feeling a little better. Are you taking the Ibrance with a full meal?
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Holly. Sorry about the nausea. Have some mild nausea occasionally. As Hope said, I take it after dinner on a full meal. Myra
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Thanks everyone, for the feedback - the timing of the pills is something to think about. I have been having them with a sandwich at lunch since dinnertime is crazy in our house with everyone running to and from sports, not sure if having it at dinner would help since I'm trying to eat light later in the day because I get the reflux worst at night, and the worst of it has been at 4 in the morning (but only sometimes).
Maybe I'll try switching the pill taking to dinnertime next cycle and see what happens. Trying to be more conscious of diet - eating smaller portions, avoiding fried things, avoid tea (hard since I'm a tea addict), avoiding acidy foods like tomato and sauce, and am thinking of cutting down on soda water (I drink it all the time, am wondering if the carbonation is contributing to it). No fun cutting out foods, but on the bright side, maybe I'll lose a few pounds!
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Holly, I've been having what I would call irritation in my esophagus,on Ibrance where I never had reflux or much indigestion before (except during chemo, but that's not surprising). It comes and goes and doesn't seem to relate to the pill timing. I even had it the first few days of my off week. It's hand in hand with increased nose and tongue irritation and sort of a cough when I breathe deep so I think it's just an Ibrance cell turnover thing.
For me it's annoying, but I can imagine it would be much worse when you already have reflux issues. Hope you find a way around it soon. Hang in there
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Thanks Roses, that makes sense that it could be the Ibrance irritation making the reflux worse (I don't have the irritation on the tongue or nose, but I do have a slight cough which I guess could either be from the Ibrance or the lung mets) - Like your irritation, it does come and go, so I'm hoping I'll get a break from it tonight.
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Holly, my reflux/irritation in my esophagus is very much like what Roses described. Started to be really noticeable during my off week between rounds 2 and 3 and at the beginning of round 3. I did not have it before so I'm pretty sure it's either Ibrance or letrozole related? Annoying but so far manageable.
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Holly, I'd just make sure, whatever meal you take it with, that it is substantial. At least 400 calories. A small sandwich may not be enough to keep the nausea away. Nausea was a big issue in the trials until they changed the dosing to be taken with a meal. I chose dinner time because it's consistent at our house AND if I start feeling any nausea, hopefully, I'll sleep through it! I have felt nausea a handful of times and when it has happened, I ate a really small dinner, or I waited too long after dinner to take the Ibrance.
Hope everyone is feeling well. My energy levels are not improving. My pain levels flared on my week off Ibrance again and it continues now. Starting week 2. Confusing. I guess I'll know soon enough if anything is working. In the mean time, trying hard to stay a little active and eat right. I slept 10 hrs straight last night. Doesn't usually happen because I wake up in pain way before then. I think the infrared sauna yesterday helps to make the pain meds work better. I think it has something to do with improved circulation. I read somewhere that using the infrared sauna on chemo days can have that effect too. Still experimenting with it to see if it helps.
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Thanks for that input, Kaydeesmile and Romansma, I am keeping it all in mind and will have to experiment and see what works. Actually didn't have it last night, so that was a relief. A friend just told me bisphosphonate drugs can cause ulcers ( Zometa is a bisphosphonate drug and I have been on it for a year). So it could be many or all of these things combined.
Romansma, I hope the infrared sauna will give you some relief soon. Praying for everyone, and thank you so much for all your great advice!
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Hi Ladies,
I started Ibrance on February 15 and have had TERRIBLE reflux. I just started on omeprazole. I also found out that it hasn't been effective for me. My tumor marker went from 120--216 in a month, so I am switching to Halaven. Good luck to you all with Ibrance.
Liz
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Sorry to hear that, Liz. Had you failed Femara previously? Hope you have good luck with Halevine.
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Hello - new to the board. Diagnosed at age 25 in 2001 and mets to bones and lungs in November 2014. Just started Ibrance (added to Femara) last week. So far only side effect seems to be headache. Was so grateful to find this board! Love, prayers and positive vibes to you all!
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Liz so sorry that the Ibrance didn't work for you. I know firsthand how disappointing it is to fail on a drug that holds so much promise. I'm also concerned regarding the Femara. I have taken it in the past and was NED for five years. But of course I'm concerned now that since I've had Femara in the past, the combo won't work as well. But I will just have to be patient and see. Just curious, had you discussed with your onc the possibility of combining the Ibrance with Faslodex? My onc had indicated that would be a possibility
Good luck on Halaven. It worked for me for over a year. I felt great on Halaven, but I caution on to stay on top of the neuropathy. I made the mistake of not telling my onc until the neuropathy got so bad I could barely walk. That was six months into it. He then reduced the dose and gave it every two weeks. I am still annoyed with myself that I didn't mention that sooner.
Praying that you do well on Halaven.
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Zimmerwoman, welcome!
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Sorry it did not work out for you Liz. I pick up mine tomorrow (With the Pfizer card!). Good luck with Halavan. Is that a Her+ drug?
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Hi all,
Just a word of caution about making sure to stay hydrated on this drug. As I was finishing up the last few days of cycle 4, I got a little dehydrated working outside and had a tailspin. I literally felt like I hit a wall. I could only lie in bed ... I couldn't even focus on TV. Trial nurse agreed with me to skip the last two doses and I bounced back.
For the newbies, I have always taken it right after dinner with no problems, only some very slight nausea in the beginning that has disappeared. Blood work tomorrow and on to cycle 5!
Good luck to everybody!
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Well, shoot, I have to delay cycle three because of mouth sores. Onc says I have to wait until they are completely healed, then resume on a reduced dose. I was too cavalier and didn't pay attention to taking care of my mouth. Gosh, I love potato chips.
My recent scan and TMs were good.
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Hello and Welcome, Zimmerwoman.
3Holly, regarding your question about Ibrance and nausea, I had diarrhea and vomiting my first night on Ibrance and a tummy ache for a couple days after, but have been ok since then. It seemed like my body took a few days to adapt. I take it with breakfast and try to avoid anything questionable like high-fat restaurant food. You probably know about sleeping on a foam wedge for reflux.
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welcome Zimmerwoman. Good luck with Ibrance. Started cycle 4 tonite. Lenn, can't believe you said that about hydration. I had a very similar experience at the end of last cycle. They gave me the Xgeva shot when my counts were down. I got out of the car and reached for the door knob and my knees were about to buckle and I was shaking. Did not feel better til I drank enough water. Flushing out these meds is paramount!
Shetland Pony, sorry about the mouth sores, but good news on scans and markers.
Have a good nite all...Myra.
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Hi. I'm new to the board, but I feel like I know you all from reading all of your posts back from the beginning one from Romansma.
I was diagnosed stage 4 to bone in from the get go in 2011. Had an amazing run on Faslodex and exemestane. 3 1/2 years NED. Was hoping for longer but that was not to be.Just started Ibrance with Letrazole one week ago. I'm very tired. I dont like being tired. I've got things to do, ya know? Anyway, blue shield denied me so we are appealing. And apparently we don't qualify for any Pfizer rebates because we make too much money. Well ok, but $ 120-150,000 a year for one medication is a lot, even for us. So, fingers crossed on the appeal.
Anywho, here I am. Thanks for all of the great insight. Hopefully I will be able to add as we go.
Stefanie
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Welcome, newbies!
Stefajoy, you are the only other person I have heard of that was given Faslodex and Aromasin as first line therapy. I hope my run is as long as yours! Are all of the Pfizer programs income-based? Good luck with your appeal. I am going through that whole drama myself.
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Pfizer didn't even ask me income as I remember. Myra.
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Myra and Lenn, I will heed your warning about staying hydrated. Thank you!
Hello, Stefajoy!
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I did the standard cytoxin taxotere drip for 18 weeks, bilateral mast, radiation, then I was put on faslodex and exemestane. Is that still first line?
I will ask my husband about Pfizer. They asked him a bunch of questions and the last one was his income, followed by...oh, you don't qualify. But it is worth checking again. I suppose they aren't asking for tax returns so I guess we could lie.
Did I say I was tired? Ugh.
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Ok. I asked hubby. He said the co pay card is only valid if your insurance approved it and pays some. Then Pfizer drops the co pay down for you.
So far, we have a flat out denial.
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