Ibrance (Palbociclib)
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Bubblebeard, tonight I will start cycle 31 of I/F. I've been on 75 mg since cycle two. I dropped down all at once (no 100 mg) because of diarrhea but I get diarrhea from everything. I have NO side effects. NONE. Most people have se's but they are minor. Ibrance is not a typical chemo drug. Sorry I was not here to welcome you but I have been dealing with double cataract surgery. Finally got a new glasses rx yesterday. My old glasses give me a headache, especially when on the computer. Probably won't get the new ones until the end of the month given Thanksgiving falls next week.
OK, a little hair thinning and the odd mouth sore but Ibrance is nothing. No panic attack required.
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Bubblebeard - the most major thing that happened to me was day 2 on Ibrance I had one BIG bout of diarrhea.
Otherwise, yes, it does seem to build up in one's system. My side effects have been: indigestion (which is pretty calm these days for the most part), fatigue (which I combat with exercise and it helps so much!), mouth sores (got very bad and finally I was prescribed Magic Mouthwash. This was a couple months ago and I haven't had any mouth sores since), anemia, and the low WBC/neutrophils (which honestly I can't really "feel" I just see this on my chart notes).
I totally had a panic attack before I took the first Ibrance. I did take some anti-nausea meds with it the first couple months because I was so anxious. Now I don't even flinch when I take it - it's like eating an MnM! LOL!
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Bubblebeard, I've been on Ibrance 125mg since April. Fatigue, yes, but not like on Taxol. Stuffy nose, yes, but it's getting better. Nothing worth mentioning. Be sure to take it with food and a good amount of water, not just a sip. I also take letrozole which does give me problems such as pretty bad joint pain and stiffness. Still, very doable!! Also, and most importantly, I/L has helped me a lot over these months. I feel better during my Ibrance weeks than I do during the off week when I just have letrozole.
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Bubblebeard I had anxiety before taking Ibrance especially because of my experience with the chemo combo in 2003. But it was nothing like that. I do get fatigue, low blood counts, some nausea and other SE's mostly I just keep putting one foot in front of the other. I do what I feel strong enough to do. I don't work which makes it much easier.
Tanya
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Bubblebeard……….I felt nothing. I just started my second cycle 4 days ago and have never had any sort of SEs. I have been very blessed with this medicine. Even my blood work has surprised my ONC. the wbc/rbc are holding their own. I went into taking this medicine with the attitude that "this is good, it will help me, I am lucky". I think maybe, our thoughts do program the outcomes. God Bless
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bubblebeard- you will be surprised at how tolerable it is. i have been on ibrance and faslodex since february 2017 and other then my hair thinning i have had great success. this past september i was nead. i pray you have the same luck
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Hi to all: Bubblebeard, Ive been on Ibrance/letrozole since May of 2017. I had a 6mo. scan last Fri. And saw my MO Monday. My tumor had been over 16cm in Jan '17, now after initial Taxol and I/L, its about 2.5x3cm. Its about the same as it was six months ago, but still no more mets on scan, (chest wall and lungs originally). My tumor markers were 16.4. My MO tries to measure the tumor manually and she said she thought it maybe felt a little bigger but the scan doesnt show that, Its hard to know what to think. She said we can scan again in 3 mo. rather than 6 mos. so now I worry about that but she said it actually looks good for now. My right breast where feels smaller and the skin isnt red like it was when diagnosed, but my nipple is still inverted so that worries me. My SEs havent been bad except for very thin hair which never came back great since chemo, and muscle and joint paint which I think is from the Letrozole. I really hope you do well on I/L. I know I hope to stay on it for awhile and wonder what can be tried next.
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You are such a lovely group of ladies! I took my 1st dose tonight without any issues. I am also on Letrozole. And zoladex. I'm already getting some nasty joint pain, nothing I can't power through. Not looking forward to any possible diarrhea but that's something I guess I can deal with lol. All in all I'm just going to count myself lucky and see how it goes. I know not everybody's the same but I'm hoping to be NED with no side effects 💜
The blood work is something that I am also going back-and-forth with my fill in on cologist about. I dont know how much I went into it on this thread, but my main oncologist is out of the office for personal reasons and I have a very inexperienced young doctor taking care of me in the mean time . I was told by my other oncologist that if I ever got on this combo I would need to come in 2 weeks after I started it for blood work. The new doc has me waiting well over a month before my 1st bloods are drawn. I've gotten tired of arguing with her so I think I'm just gonna go to my primary care into weeks and have her pull a CBC. If there's any abnormalities we can contact my oncologist at that point because fighting back-and-forth with her nurses has gotten me nowhere. Ive already been for a second opinion and that oncologists reassured me that we are on the right track but I cannot wait till my doctor gets back… supposedly by January
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Bubblebeard, that is nuts! All of the documentation clearly states you should get bloodwork 2 weeks after starting, and then again during your week off. Perhaps your PCP can step in for you until your regular onc returns. Once you become more stable you can be moved to once a month, but that usually takes a while. You are correct to advocate for yourself and proper monitoring. Good luck!
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It is nuts! I know it. We've done our research and my mom is a registered nurse. It's fairly easy to tell when something's off because we've been going to the same place for years. With my old oncologist I never had to advocate for myself like this.... she was so on top of everything, now I'm checking my own blood work and getting 2nd opinions because I just don't trust her judgement.
I gave this fill in doctor a chance, I really did. I try not to make assumptions… she walked in the Room and is probably 25 years old at most. I was a nervous wreck until I got the 2nd opinion. Blood work has been ordered, then canceled, then ordered again. My treatment was being put off. I had to finally put my foot down and tell her I was not going to wait 5 weeks with stage 4 cancer and absolutely no treatment. At that point she finally started my medications. It's been a rollercoaster.
Anyway, I am relieved now that I've started my medication and all of you ladies have reassured me about the side effects. I think I am just going to have my primary care set up a CBC. She's very accommodating and is aware of the situation at Moffit right now (2 major BC oncologists are out of the office for months leaving all their patients to fill in docs...its a nightmare)
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Good for you and your mom, Bubblebeard. It is quite simply not safe for your blood not to be tested at proper intervals early on. So glad you're advocating for yourself, though you certainly shouldn't have to. We all have enough on our plates without worrying that our medical team is not on top of things for us. I'd be ready to steamroll someone. Janet, you need to get over there and do some fanny-kicking with Bubblebeard!
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Bubblebeard-I started Ibrance 125mg on 10/26. Two weeks later on 11/9 I had blood work. Unfortunately wbc were 1.1 and had I finished the last week they would’ve dipped under 1.0 making me neutropenic. I trust my onc and like these other ladies have said it’s so important to have blood work done at 2 weeks to stay ahead of any issues. Trust your gut-and your mom 😜. I’m 45 with three teenagers and I still look to my mom for answers. I start 100mg on 11/23 once blood work says it’s a go. Keeping my fingers crossed.
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Bubblbeard - here is one for ya!
Question: what do they call someone who graduated from medical school with all C’s?
Answer: Doctor!
I would run like hell from that inexperienced oncologist. Trust your instinct and that inner voice!!
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Bubblebeard the Pfizer company usually calls during the first few months sometimes they have mentioned things that were not discussed with me by my doctor. The difference is that my doctor listened and adhered to all of the protocols.
I was told before I started ibrance that bloodwork is done after two weeks and then again in two weeks. If all is well then I still get bloodwork the week before my faslodex shots and the week of shots.
Moffit is good but I’ve heard patients complaining about waiting for treatment. I get a zometa infusion once a month and a patient told me she chose Florida cancer specialist just because of the wait at Moffit. Stage 4 we don’t play around with waiting for treatment etc. I’ve had a couple of surgeries at Moffit but I don’t use them for my oncologist. Is there any other oncologist in there that you can talk to? Maybe write an email through the patient portal and include Pfizer’s instructions for bloodwork?
Tanya
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I just had my bloodwork done yesterday before starting my 8th cycle of Ibrance/Letrozol Monday. Except for the original bloodwork done before starting treatment I have only ever had my bloodwork done once a month during my off week. Luckily it's always been good. I have a CT scan every three months and after the mess of the last one I'm looking forward to my next January 4th.
Also, Bubblebeard, I had the worst constipation a month ago which the nurse said was a side effect. It can go either way. So now I take Senakot at night to be sure. I'm losing my hair and it's quite thin now. My nose runs like a tap but it did a bit before too. Other than this it's the fatigue that's the worse. I seem to be always so tired. But then, no pain, no mouth sores etc. yet so I'm very happy with these drugs certainly compared to chemo.
All my best to all and wishing you a wonderful Thanksgiving next week. Turkey, ham yum yum.
Cathy
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Bubblebeard, I would PRINT Pfizer's instruction for blood work and take it to that MO next time or sooner.
Joyner, I would do some butt kicking for BB but I have my own to do. My MO sent a new rx for Ibrance to Walgreen's. I have to tell them over and over what pharmacies I use (yes, I use multiple pharmacies because of my insurance) but you'd think they'd get it right eventually. And the money person at my MO's office yesterday gave me an email from PAF (foundation) that said they had funds starting at 1 PM yesterday. By the time I got home and checked, it was gone. A few hours. So I'll be spending hours on the phone today with MO, foundations and Pfizer. I'm pretty concerned, especially with January coming up when co-pays are so high. PAF was offering $4000 and $3000 of that would be used up in January. Glad I have a few spare bottles sitting around.
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In Canada our Ibrance is covered so we, fortunately for us, do not have the worries you have over payment. I do notice as well that Ibrance seems to be cheaper here as well. When I picked up my Ibrance yesterday at the drug store it was billed at $5,652.09 Cdn for which I paid $4.11. I remember this from years ago when I took herceptin. A lady was picking up hers and as a non-resident had to pay and hers was much cheaper than it would have been in the US. I don't know if this helps anyone but perhaps checking out.
Cathy
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Hi Everyone –
I've been a frequent lurker here sponging up all of your good advice for the past few months.Since Bubblebeard inquired on SE of Ibrance, I thought I would participate as my experience has been different than those already mentioned.
Bubblebeard – I am on my 3rd cycle of Ibrance.After starting at 125, I was titrated down to 100.Like most others have posted, I have had increased fatigue.But instead of diarrhea, I have been very constipated.I manage this with Metamucil twice daily and increasing water intake.I also have a frequent runny nose and loss of appetite.I have not had joint/bone pain, hair thinning or mouth sores.I take everyone else's word for it that these are all mild SEs since it is my first line treatment and there is nothing to compare it to.
I have not received a communication from Pfizer.
I had my first scan this week since starting treatment and it showed increased sclerotic bone lesions (my mets are all sclerotic bone).I am meeting with my MO next week and am hoping she will say this is indicative of a tumor flare.
BTW I am an oncology nurse and if any patient asked for something as simple as a CBC, we would order it even if it wasn't indicated just to ease the patient's anxiety.
Leigh
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seaway: Ibrance is just shy of $8,000 for me in BC. Paid by extended medical and Pfizer picks up a portion that's not covered. I was originally told it would be $11K so the $7,980 was a surprise. Either way I'm happy I don't have to pay for it. No one should have to!
BubbleBeard: Good on you to advocate for yourself. Esp when something doesn't feel right. I made the mistake of NOT second guessing my doctor at the start of Ibrance over a year ago. I didn't get lab work done at all until I was expected to start cycle 2. I was told it wasn't necessary even though Pfizer says it is important day 1, 14. By the time I did my CBC my neutrophils were almost at zero. I had the worst experience with mouth sores in my off week. This likely wouldn't have happened if we'd done my CBC mid cycle as I would have stopped. It took me over 4 weeks for my counts to rise above 1.0. My doc learned from my case. I always did labs around day 10 after that and had to drop to 100mg after first cycle and then to 75mg after my second cycle. Now Im on a 21 days on and 14 days off cycle and check labs at the end of my two week break. Side effects have been minimal if at all on the 75mg. I don't recall ever having diarrhea. Hair thinning yes.I had some stomach pains a few times but it has been nothing like chemo! Every body reacts differently but this drug is very tolerable/manageable. Wishing you well!
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OK ladies, after talking to my mom and seeing all your responses I got upset again lol. Not sad upset but mad. I hate that I have to do this but I ended up calling my doctor's office again and told the nurse that she needed to go track down my doctor and that I needed blood work 2 weeks after I started.
I was on hold for like 10 minutes… she came back on the phone and said "Oh, yeah we're gonna go ahead and schedule you for blood work in 2 weeks"... And the way she said at you woulda swore it was her idea. Why did I have to even do that? Anyway, it's getting done so that's good.
I woke up with a terrible headache this morning but other than that I can't even tell that I have added a new medication to my list. Hoping it stays as easy as possible… I never got mouth sores , even with the chemo. That does not sound fun.
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Welcome, Leigh! We're happy to have you among us but sorry that you have to be here. As an oncologist nurse, you may become the recipient of some questions! Let us know what the MO says about your scan-
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GG27
I think it is outrageous how unevenly access to breast cancer drugs is granted in Canada. It shouldn't depend on what province you live in as to whether or not you receive vitally important medical care. And it shouldn't be a bureaucratic government decision, it should be up to the doctors. It makes me SO mad.
I hope your doctor can facilitate a special compassionate care request. My onc recently told me that the Ontario government is trying to shut down the use of Exemestane/Everolimus as a second-line treatment, because it is too expensive...again , it is just so wrong it leaves me speechless.
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One of the SABCS2018 abstracts describes an upcoming clinical trial where the goal is to see whether Ibrance should be moved to secondline only. The idea behind the trial seems to be that, because people are staying on firstline Ibrance+AI for so long (?) that it should be determined whether the "toxicity" and "costs" (!!) are too high, at least compared to whether there is a real advantage in survival. For example, maybe just go on Fulvestrant or AI until you get progression, then add Ibrance until you get progression again, etc.
Given how hard it is to show any survival benefits to any drug in MBC (because patients do tend to live longer than in some other cancers, and are moved onto a whole panoply of different treatements for the next steps, some of which work and some do not), it seems likely that this trial might not be able to show an OS benefit, or OS difference between the two approaches . And how "much" of an OS benefit would it take for Ibrance to be available as a choice for us up front?
My concern is that every time we have progression, the cancer has mutated to overcome the drug- sometimes it mutates to ESR1 or PI3K, sometimes it goes to something more dangerous like triple-negative, or to HER2 or a bunch of other things. The more mutations the cancer acquires during treatment, the more aggressive it gets. So from my perspective, I would want to stay as long as possible PFS on each treatment.What If the firstline were just an AI alone, and then the cancer mutated to triple negative? In addition, it is incredibly stressful every time you get progression, so I'd want a longer stretch, and I don't think Ibrance is so "toxic" and could care less how much it costs.
But I wonder what others think, and maybe there could be some positive reason for this trial that I'm missing? And it does kinda piss me off that they are doing trials like this rather than figuring out what our next best subsequent therapies should be!!!
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Amici’s; I do agree. The federal government has over time reduced their monitary responsibility for healthcare to the provinces allowing them to make these individual decisions. There are provinces I would certainly not want to live in with a serious illness. I’m not sure what we can do about this other than educate the public to create pressure. I have friends in other provinces with different cancers that I do not believe are getting the care I am here in Ontario. We are not the worse province.
Cathy
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It hasn’t been mentioned lately and we have so many newcomers, as well as mention of constipation, that I wanted to raise again that it’s really important with Ibrance to drink tons of water. This won’t solve it for everyone but there’slots of other benefits. I’m somewhere around my 26th cycle and can tell a big difference when I’m even mildly dehydrated.
My newest SE is acidic stomach a couple of days during my off week. I’m adding more probiotics then trying to reverse this. It’s terrible
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Cureious, isn't being on a treatment a long time without progression the goal? Are they saying the drug combo works "too well" for first line treatment? Now that so many ladies are on Ibrance, shouldn't the cost begin to go down? They always say it is the research that costs, so how far out does it justify the expense? We receive enough conflicting signals without this one rearing its ugly head. I am with you!
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HI every one
Loved your video Granny. Helped me to remember positive things now when things feels dark. I'm tired of sleeping pills and painkiller. I was thinking of by some cbd oil. But would like som recommendation. I do not know what strength to buy. Can't talk to my onc about this. It is not really accepted in this country I'm living in even if it's not illegal.
Waiting on MR resultat before I can go to a physiotherapist. I'm started limping but I think I'm overworked in some muscles . But it can't get helped without they checked with mr
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Cure-ious, I'm in agreement with you 100%. Progression would indicate, I believe, a generally diminished level of resistance in an MBC patient and therefore a more hazardous/tenuous position for the patient going forward. The classic locking the barn door after the horse is out.
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Josalo...
I'm so sorry to hear you're in a dark place. Know that we're all here for support and to cheer you on. I use CBD oil quite successfully for a lot of my neuropathy and joint pain, It also helps immensely with the depression and anxiety. If you would like to pm me I would be happy to help you out. There's so many different kinds and brands and it does depend on where you are for what you can get so I don't wanna clog up this particular forum. But like I said if you want to message me please feel free
Jenna
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josalo. Thank you. Believe me, it's hard to stay upbeat all the time. I don't, in fact. But it does seem my body has gotten used to IL. I have mood problems that I believe are mostly from letrozole. And the kicker is I have ESR1, so L is not doing be any good, just bad. Grrr
Cure-pious. I agree too. That would be a shame if they changed it. Boo to that idea.
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