Ibrance (Palbociclib)
Comments
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Hey Patchingpeg...you mentioned Ann gave you a copy of MBC guideline...can I get a copy. Maybe it will help me to understand a little better. Also, Z you are so knowledgeable and I appreciate all your info.0
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Hi patchingpeg and other newcomers - regarding the list of side effects I itemized a few posts back - I didn't mean to scare you or make you more apprehensive about taking ibrance. Although I have experienced what seems to be a lot of side effects they have all been very tolerable. And keep in mind I didn't and don't experience all of them at the same time. Some have come and gone never to be seen again. None of them have prevented me from enjoying a very good quality of life. Many of us on this protocol do! It's just that questions about side effects and what to expect from Ibrance from people new to the protocol come up from time to time and it can be daunting to read through 194 pages of posts to parse out the specifics you are looking for. So I thought I'd offer up a list from my experience. I also was hoping to underscore that everyone responds differently to treatment. You really won't know which side effects you will experience until you've been on it for a few cycles. I remember being scared of this protocol when I first started. My biggest concern was the low white blood cell count compromising my immune system. So far I haven't even had so much as a cold!
Hang in there! Take your pill on Wednesday. I am very grateful to even have this pill to take.
Cathy
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Hi Dee (GG27) - so good to hear from you. You are missed.
You are only the second person I've heard from to report the rapid nail growth effect. It is too weird, right? Just so you know, I still get hot flashes (although they are mild) and I'm in my 11th cycle. I think others do too so I don't think it is unusual to be getting them past cycle 2 as you oncologist indicated. I believe it's from the Letrozole.
Cathy
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Thanks, Pony! I did get Orajel Pain relief and that helped a bit. I will call MO to call pharmacist about Magic Mouthwash.
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Shetland, the CT + bone scan combo gives much the same info as a PET/CT. They show different things which, taken together, show active vs. inactive bone damage. It's what many institutions, including UCLA and DF, use. Of course it also helps to have specialized radiologists who primarily read a particular type of scan and oncologists who deal with a lot of mbc to ensure accurate interpretations. I was once told by a perhaps inexperienced PA that I had progression based on a CT only report, only to have my UCLA onc say, "Not so fast... it's much more likely to be healing," which it was. So the info is there, it just needs experienced interpretation.
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Oh, Cathy - I, too, feel very, very blessed to have this pill! I cannot count the number of times that I have said in the past six weeks - 'if this had happened two years ago, the conversation would be so much different!' Yes, your list was excellent and helpful - and yes, daunting. I am just working on building the fortitude that the next few years will require. I am trying to remember and utilize all the mental, emotional and spiritual tools that I used 23 years ago. And one of the tools was information-gathering. I cope way better with more information. I will happily, if regrettably, take my pill on Wed. Does that sound contradictory? Thanks for the good info - it is nothing but a HUGE help!!
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Airlinegal - in this Stage IV forum, look for the thread by Ann titled - Just sent the 1,000th copy of my MBC guide. She will send it to you. It is a phenomenal reference source. here is a link to the topic (if it works!) Ann's guide to MBC discussion thread
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Deanna, yes, an expert radiologist (NCCN place) told me that CT with contrast, plus bone scan, is a good combination. But he also said that in my case PET/CT would serve me well. I think that a patient's particular circumstances, and not just the place they are treated, inform the choice of scans. In my case, I do not have bone mets, and I suspect that because the liver lesions were so large and so many, that looking at metabolic activity via PET may give a valuable picture that size measurements done by CT can't give. With bone mets, yes, they can see the difference between a new met and a healing met, but I don't think that a liver CT can distinguish that. Agree that interpretation is critical. My onc and I wanted to try the CT with contrast to get a different sort of look at everything, because of the recent ambiguity of TMs and PET/CT. A CT with contrast is better than a CT without contrast, which is what you get with a PET/CT. As far as I can tell, my contrast CT did not reveal anything important. Or rather, no news is probably good news.
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That makes perfect sense, Shetland. Thanks for pointing it out. I hadn't even thought about the difference between imaging bone and soft tissue. I'm glad your results were all good. D.
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Hi patchingpeg - thanks for your response and understanding my intent. I surprised myself for forgetting how scared I was when I first started this protocol...
Cathy
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Airlinegal...I live in Burlington so I'm only a couple of hours away. Nice to "meet" you!
Thanks to all of you who gave me advice about the tooth extraction. Unfortunately, I had to have the tooth taken out yesterday. Went to an oral surgeon who was very knowledgeable about all of the possible risks so know I'm just praying for the best.
Have a great day yall!!
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Animalcrackers - thanks for posting your list! I agree, noting I had major hair loss and now use a hair halo, plus the biggie SE is fatigue. I saw Dr Glasby at UCLA yesterday as I started (drum roll) round #12. He said I have responded very well to ibrance, but the jaw met needs rads, which I will start in December after my cruise. Also told me to forego my next PET until I am finished with rads. And importantly told me he has one lady on Ibrance for 4 years! That's my goal too. And I am still working and lost another 2 lbs (Z!) - because I am walking every day. So if you met me, or saw me speak on the NM panel, you wouldn't guess I was on all these meds in Stage 4. I try not to think about all of it too much. As I headed down to my car yesterday I saw my old neighbor, Joni Mitchell (yes that Joni) in a wheelchair after her stroke. We talked for a few minutes in the elevator. She is a fighter too! (())
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Hello Ladies,
I am joining this forum. Rats! Was on 400 mg. Xeloda for 1 full year (October) and in August my CA 27/29 rose 50 points. My PET/CT scan showed 5 "hot" lesions with 3 new ones on my cervical spine. My MD wanted to radiate and start a new chemo, but I was going overseas for two weeks, one week off and another two weeks and didn't want to start a new chemo. I did take my Xeloda however, to help whatever it could. Last Monday, I did my 3 month PET/CT scan and found that I had "blossomed" according to my MD. My CA 27/29 went up to 217 - so new something was cooking - just didn't think there would be so many. Many are on the bony sites - over 60 new lesions with a 2nd one on my liver. WTH! My MD wanted to me to do another trial, but I did one in Alabama for 4 months and ended up with a new lesion in my liver and in my neck, so no ablation for me. I work about 56 hours a week as a paramedic and am going to start Ibrance/Femara tomorrow. Thanks Animal Crackers for the list of side effects. Was wondering what to expect. I just hope that Hand/Foot Syndrome is not part of it - can't wait for my hands and feet to heal from Xeloda. So are the majority of you taking the combo at night with dinner? Sounds like you need a full meal to counter act some side effects. I started reading your postings (I was on the Xeloda forum) and am grateful to see some of you have some longevity with this drug. Hope for the best!
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I am also joining. I started Ibrance yesterday along with femara and will get my xgeva and 2nd lupron shot Monday. My doctors downplay side effects but I'm glad for this forum to let me know what to expect. I had a blood test to test for cancer mutations and while the plan was always Ibrance the test showed that I had a mutation of my CDKN2A gene which Ibrance specifically targets so my doc is extremely happy about that. Anyone else did this test - mine was Guardian360 Tumor Response Map? Thanks a lot for all the info. Hugs to everyone! Jo
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Welcome Lisa and Jo!
You will find quite a bit of helpful information on this thread. I'm on cycle 13 of the Ibrance, Femara protocol and am getting Xgeva every three months to strengthen bones. So far the side effects have been annoying, but manageable. There is a pretty comprehensive list of possible SEs that is on page 193 (I think). Sometimes it takes a few months for improvements to show up, but other times the combo works very quickly...
The last week of the cycle and the week off seem to be the most challenging. Fatigue and fuzzy brain make it harder to focus. I have found that exercise is absolutely the best way to offset the SEs.
Again...welcome! I hope Ibrance is wildly successful for you!
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Welcome Mediclisa and Jo! Sorry you are here, but this protocol can really work for some ladies. Lisa - I am working full time too. I find that Ibrance is best taken with dinner as that is my biggest meal, but others prefer breakfast. Are you starting on #125mg? No HSF here - that is for Madame X. However, the fatigue, mouth sores and hair loss do happen for a lot of us.
Exercise seems to help a lot. Avoid graperfruit (and for me pineapple) as that can interfere with Ibrance. My onc feels this protocol can help a lot - so hoping you both respond fast! I started round #12 yesterday. Any questions - fire away- lots of savvy ladies here. (())Claire
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Mediclisa, welcome. I've been on the combo since February with really good results and very minimal side-effects (low Neutrophils and manageable fatigue). I take Ibrance right after dinner and Letrozole in the morning with only water, and this has worked fine for me. I hope that you have the same good response that many of us have had.
I avoid grapefruit, too.
Katty
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Hi ladies -
I posted Animal Crackers list of symptoms HERE on a separate thread dedicated to Ibrance side effects so we can easily link to that information for people looking for it. If everyone would just jump onto that thread and report their symptoms, briefly and what, if anything, they did about it that will be helpful for people considering ibrance or those on ibrance trying to figure out what is going on.
Remember that you can edit your posts. That thread will work best if everyone makes one post and updates it rather than doing multiple posts as thoughts occur to them.
>Z<
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Hello Lisa and Josgirl,
Sorry to hear that you qualify for the group, but happy to have you aboard. Ibrance is a great medication. I think you will be surprised at how well you tolerate it. I take all of my meds with breakfast. I was told no grapefruit, pomegranate, or star fruit. (not sure many of us ever partook of star fruit that often!) I am on cycle #6. I think I had already "blossomed" at my initial Stage IV diagnoses. Mets all through my spine, ribs, hip, and one in humerus, two small mets in liver. Ibrance basically annihilated the liver mets and shrunk the others after three cycles. My tumor markers were in the high 600's, but are coming down. Here's to a long tolerable run on this protocol for all of us!
Holding you all in the light, MJH
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I discovered star fruit just a few weeks before I learned I wasn't supposed to eat it. Phooey.
My oncology nutritionist said to avoid grapefruit, noni, star fruit, pomegranate, and bitter orange/Seville orange (Other citrus fruits are ok). This is because the same liver enzyme, CYP 3A4, is involved in metabolism of Ibrance and these foods.
Iwrite, I agree that exercise helps with so much. Kind of like compost helps no matter what kind of soil you have in your garden.
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Shetland, I may have commented on this earlier, but several of us on a FB thread for Ibrance have called Pfizer -- one as recently as last week -- and the only food they warn against eating is grapefruit. Not saying the others may not be an issue for some, and I'm certainly not a scientist. But per Pfizer, grapefruit is the only one they're concerned about. And the issue is that it actually increases the effect of Ibrance. I eat pomegranate seeds all the time with no noticeable issues. Just thought I'd share this, but by all means we each need to trust the advice of our own oncs.
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Yes, good point, Deanna. This topic puzzles me. On the one hand, my oncology nutritionist is at a major cancer center; on the other hand, Pfizer ought to know. Maybe the nutritionist looked up the enzyme and wants to be extra careful? Maybe Pfizer hasn't considered less common foods, or maybe the other foods would not have a very big effect? Just anecdotally, when I started getting a mouth sore after a long period without them, it was when I had been eating some of the other fruits. But it could just be a coincidence. MJH, where did your info come from? I'd like to get to the bottom of this. I really like pomegranate juice.
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Hey Z - thanks for starting the new thread for the Ibrance side effects. I know I said I would start it but I didn't get around to it so I'm glad you took the initiative to launch it!
I wanted to compile a comprehensive list that included other people's contributions and remove the items specific to letrozole. I'm happy to take what's been posted so far from Deanna (dlb823) and Shetlandpony and merge them into one list (along with their helpful comments). As people post more side effects I can update the list so that the top post of the thread contains the full list. I think we should keep the original posts but just update that top part of the thread. Is everyone ok with that?
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I have not seen a study of grapefruit and Ibrance. This admonition, I believe, is based on what is known about the pharmacology of Ibrance (it is metabolized by CYP3A4) and what is understood generally about grapefruit and friends.
Grapefruit and some other fruits have furanocoumarins that INHIBIT CYP3A4, one of the enzymes that is known to metabolize ibrance and many other drugs. The risk is that the level of palbociclib in your blood will INCREASE because it is not being broken down (metabolized) as quickly. Any fruit containing furanocoumarins will do this. They are mostly related in some way to grapefruit. The fear is that you get an overdose.
I see this as an issue if you are having severe side effects on ibrance to the point where you have to consider lowering your dosage. However, on this protocol, they want us on the maximum tolerable dose. There isn't necessarily a problem with a high dose.Furthermore, the blood plasma levels of ibrance vary widely between individuals in the pharmacology studies. I think they would have a hard time even finding this effect if they did a study.
In defense of grapefruit, pomegranate and star fruit: These are tasty and healthful foods that can help control your weight. If you side effects are severe, it would interesting to experiment with cutting out these foods for one cycle. Certainly no issues with grapefruit on your days off.
I have heard people take this as far as worrying about putting lemon juice on their fish (yes there are furanocoumarins in lemons). But I enjoy the occasional grapefruit. I drink a lemon and ginger drink frequently as an easy liver cleanse. The citrus fruits are not something I want to eliminate from my diet.
I think it is more important to focus more generally on a healthy lifestyle than get distracted by this.
>Z<
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Animal Crackers - That's a good idea. I would wait until a few more people post. I am going to post my own experience at some point, but haven't gotten to it yet. I just wanted to get your post up there, since I think it covers about 90% of the issue and there were a number of people looking for that information.
Since I started that thread, I may be the only one who can edit the anchor post. We can chat by PM on how to get that done.
>Z<
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ShetlandPony,
My info about the fruits to avoid came from my Ibrance handout provided by my MO's office. The source of their info is not present on handout.
Cheers! MJH
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Okay, dumb question...what does the "M" in MO stand for? Managing, moronic, main, monkish, metastatic, macho, melodious?
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Hi Kattysmith - there are no dumb questions. MO stands for Medical Oncologist.
There is a button called "help with abbreviations" on the left side of your screen below this menu and under the "jump to forum" search field. It'll bring you to the Topic "Discussion Board Abbreviation Key". You can also navigate directly to the topic. See screenshot at the very bottom.
The button above brings you to this topic. Or you can navigate to it yourself following the path provided here.
Cathy
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Too funny, Katty! I have two oncs who, until now, I have simply referred to as UCLA and local. Your post cracked me up and inspired me to rename them based on something much more entertaining than their location. I've gotta think about it, but thanks for the laugh.
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Thanks, AC, so far that's the only one that stumped me. Medical? I wonder what other kinds of oncologists there are.
(That's a joke!)DLB, glad to be of help! Now I have to think of one for mine, too, ha!
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