Ibrance (Palbociclib)
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Holly- CDK4,6 inhibitors were initially restricted to ER-positive cancers because that was the strongest marker for response to the drug. CDK4,6 activity is up-regulated by estrogen, and is needed for estrogen-dependent cell growth,
But just recently they found that about one-fifth of TNBCs, characterized by low levels of the CREBBP protein, are also sensitive to CDK4,6 inhibition
http://www.pharmatimes.com/news/researchers_identi...
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Here is another discussion of what to consider when you get progression on Ibrance-Femara/Faslodex.
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Thank you for the positive vibes, PatGMc!
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RosieRed,
The most helpful things for me to minimize side effects are drinking lots of water-I try to get in 72 oz a day. The other thing that helps me is to exercise as much as possible given how I am feeling. Stretching, yoga, walking, etc plus the water all seem to keep the Ibrance moving in the body. As counterintuitive as it may seem, exercise seems to diminish fatigue. As Pat notes, you may not even experience side effects.
Cure-ious-thanks for the great articles! They are so very helpful and encouraging. Do you know yet if you are going to change treatments or add anything?
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Thanks, Chicagoan, for the suggestions. Feeling a little nauseous from the Ibrance, so I've been trying to drink more water. Snacking seems to help a bit too. I'll have to make time to exercise. My kids are remote learning and I have a part-time job.
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Rosie - you are taking it with a main meal, yes? Also I have seen recommendations to have it with a bit of fat (like piece of cheese or whatever). I tried a bunch of options (breakfast, mid morning, lunch, dinner) and dinner works best for me from a remembering standpoint and its my main meal of the day. I didn't mind at breakfast, but then i was eating way too many calories!
Some ladies prefer the evening to manage side effects like fatigue. If you decide to try a different time, wait until your next cycle. And even a 20 min walk helps, it doesnt need to be a big to do.
Good luck!
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SondraF brought up taking Ibrance in the evening to help with fatique. I have always taken it at breakfast. Do those of you that take it in the evening notice that it leaves you less fatigued than when you took it in the morning?
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SondraF,
Yes, I took it after eating some scrambled eggs with cheese in it. I’d prefer to take it in the evening, but my nurse said to start in the morning to see if I have any reactions to it. If so, then I could call them and let them know. I do have an elliptical that I can use. Maybe find a TV show to watch to distract me while I exercise.
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Thank you for asking about recommendations, RosieRed, and to everyone for all the great suggestions. I'll be starting Ibrance next week (my doc wanted to wait a little bit after completing SBRT). Hoping for minimal and manageable side effects, and am very grateful this medication is available.
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X-posted with the Covid thread, but I found out tonight that my last neutrophil count was .98, though that was after two weeks off (but two days after my Covid vaccine). Has anyone experienced a dip in neutrophils after their vaccination?
Also, Candy - 26 March is penciled in for the BSO (ovary removal) surgery, if you want to add that to your tracking. Surgeon mentioned he likes a 1.5 or higher count so there is likely a filgrastim injection some point in the next few weeks.
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Sondra- I will add you to my list of upcoming appts for pocket duty. Let me know how it goes. I am 50 years old, still had periods before all this cancer stuff, so now in chemical menopause with Lupron (Zoladex) injections monthly. I have wondered about having my ovaries surgically removed so I do not have to do the Lupron.
Per my MO, I was to be off Ibrance 1 week before Covid vaccine and then 1 week after vaccine to make sure my counts are up for the vaccine. I did that regime with Covid vaccine #1 but I did not recheck labs before restarting Ibrance. Now, I am off again for vaccine #2. So I don't know how my counts are. Wow, .98 after 2 weeks off is low !!! I don't know if the vaccine lowers the numbers.
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Yeah I was surprised by that - I didn't find out at our appointment as there was a delay in biochemistry and as I am usually at or around 1 she is happy to release the Ibrance. However, in January I also had that sinus infection and possibly covid before that so who knows. And yet in November I posted a 1.06 after three days off.
To be fair my nutrition went completely off a cliff in early January and I am only getting it back on line now. Something to discuss Monday with the MO (surgeon said he may drop in at that time if he is out of surgery to say hello. I really liked him and he is highly regarded). Food isnt fortified here like in the US for the most part so you really need to keep on top of a balanced diet and its really easy to NOT be balanced too. Although I do keep a box of fortified bran flakes in the house.. maybe ill have a bowl here in a moment. Had baked chicken, rice, and wilted spinach for dinner.
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Sondra - That’s a tough one. I don’t get blood tests often enough anymore to tell you. I only know what my ANC was the day OF my vaccine. My ANC was 1.42 on the day of first vaccine and 1.25 on the day of my second vaccine. I know that doesn’t help you. I’ll keep my fingers crossed this was a one time dip for you. 🤞🏻
FYI - the second dose knocked me on my butt for a day but I’m good with that. It was short lived and told me that my body built plenty of antibodies after dose 1.
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Chicagoan,
Yes, I am going to start Faslodex next week- because the mets are still confined to bone, and because I did fine with femara-Ibrance (5.5 years), she wants me to just move to Faslodex, and keep taking Ibrance. My first shot Wednesday, delayed a few days because I get my second Covid shot Monday. So I get the Covid shot, then the next day have to go get a blood draw and take a Covid test, because you cannot get into the infustion room without a Covid test. And I had a rather strong reaction to the first Covid shot, so this is going to be fun!! There will be three shots of Faslodex in March, each one preceeded by a Covid test. Plus I am finally having cataract surgery, two separate days in March, each one of those also requiring a Covid test- so, that means one Covid vaccine and five Covid tests- and a lotta running around and driving (while vision- impaired) this month!
What I am really enjoying is my bit of time off Ibrance, I am off this week anyway, but then with the vaccine will stay off next week. My thinking right now is to stay off Ibrance for a couple more weeks, and keep on the Femara for the first month while starting the Faslodex shots. I really feel my body needs a break from the Ibrance, and I am weaning myself off Prilosec for the GERDs I get from Ibrance. So first month maybe Faslodex-Femara, then move to Faslodex-Ibrance in second month. I;d like to get over the GERDs and get my neutrophils fully up there before continuing. But, depends on my tumor markers, if those are moving higher I may chicken out and add back the Ibrance earlier...Now that I hear faslodex can be easier on the bone pain, I am excited to try it!
At some point soon there will be a scan so we can sse if this works, and if not the plan would be first to try switching out the Ibrance with Verzenio..
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Cure-ious-That sounds like a good plan, although you will certainly be busy running around to various appointments! Lots of Covid tests too!
I really hope that the Ibrance/Faslodex combo works for you. You are a trailblazer for us and I wish you all the best with the med change and cataract surgery. My friends who have had that surgery have reported it is amazing how well they can see again-they hadn't realized how much vision they lost. Hope you have the same spectacular results!
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Yikes Cure-ious that’s a lot all at once! You’re clued up though so I’m sure you’ll see a way through. I really hope the Faslodex combo works well for you!
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Thanks you guys- and Karen, I'm sorry the Faslodex did not work for you! I really haven't heard of anybody who got a long run out of anything in the second line, but we'll see how it goes, obviously. The Foundation One did not give any clue as to what's up with these resistant cells, so all you can do is try it and see..I will be thrilled to see again, especially colors as I like to make quilts and wall hangings with bold colors and now everything is fuzzy and dull!! There seems to have been a back-log with the cataract surgeries, this was the first they could get me in when diagnosed last July! The surpeons only work one day a week and then Covid shut down on and off a bit- they kept saying surely a cancellation will appear, but nope!! I had eyelift done last summer, now this, and if Covid lingers any longer I am going for the laser facial and anything else requires a long "down-time"
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Question- does anyone think it would be worth it to only start on letrazole and delay taking ibrance only when there's progression? Just to have it available as another option down the road? The research I've read seems to indicate a longer period of progression-free with both, but I'm wondering if anyone else has done this delay. My MO recommends doing them both, starting next week, but said we could also just start on letrozole if I want to.
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Cure-ious, hey, that's what I did in October. Had first Faslodex shots on Oct. 21. Stayed on Ibrance. Had Pet in January that was "mixed." Some mets (bone only) grew and some got smaller. (No one even mentions my lung mets anymore.) I opted to try for another three months to see if we get a trend. The shots for me are nothing. I turn on car seat heaters on the way home. MO knows he can't control what I do and doesn't even try.
I also had cataract surgeries (both eyes) last year. I only wear my glasses for driving now because it feels weird driving without them. My eye doctor said I would pass the eye test to drive now without glasses.
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Took my first Ibrance/Faslodex/Zometa on Monday. Today had a low grade fever, chills, and nausea on and off all day. Is that common when first starting this combo?
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Rosie - it is the zometa. After getting my first dose, I got chills and felt like I had the flu. It passed after a day. Hang in there.
Cure-ious - that sounds like a great treatment plan. Excited to see if this combo does the trick. Hope you do well with all the covid tests, cataract surgery, and the covid shot. Many say the second one knocks you out. I wouldn’t know since I am so low on the totem pole here in OR. Thanks for the cdk info. I am curious to see what my Foundation 1 reveals. I just had it done yesterday.
Someone asked about taking ibrance at night vs morning. When I took it, I did it at night. I did not feel too much fatigue since I was sleeping through it.
Sondra - I had a BSO in 2013 when I was 36. It is nice not having Aunt Flo come. Hee hee.
As for me, I start RT next Tuesday. IMRT for the soft tissue mass on my chest for 10 days and 5 treatments of SBRT to my L5 and humerus. Hoping it resolves my Horner’s syndrome. I also start immunotherapy (Keytruda) this Friday. I’ll be making multiple doctor visits just like you, Cure-ious!
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Rosie - was it chills like when you get the flu or, what I called, "deep bone cold" where it feels like while your body is warm enough you can't seem to get the bones warm?
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My goodness, the complicated lives led by MBC survivors! It all just seems too much yet everyone takes it in stride. You are some incredible women!
I'll be praying for everything you're all facing, that you have peace and that you feel better.
For those who are new on Ibrance you can be confident that most of your side effects will come and go. I remember when mouth sores were one of my most annoying things and then I ate Greek yogurt for months and I almost never get a small one, much less the throbbing ones I had.
Fatigue and the GI problems remain with me but I'm still glad to be where I am though I may have to get out and whup some older granny to get that second Moderna vaccine!! I didn't live these nine years with MBC (never mind the other eighteen with BC) to die from some crummy virus! When shot openings are posted in our county they fill up in a flash. (If I get arrested I'll get my hubby on here to start a GoFundMe for bail!)
I have my oncologist trying to find some 75mg Ibrance capsules for me, perhaps turned in by another patient. The pills are much harder on my GI tract for some reason. That used to happen to me with the generic AIs coming from different companies. Nobody can explain it except to say the binders must be the culprits.
Have a wonderful Wednesday, sweet friends.
Love from PatGMcViolent
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SondraF - it felt like I had the flu, like my body was trying to fight off something.
Hollyli1202 - thank you for your response. A couple of people on the bone mets thread said I might feel under the weather, but when I asked my nurse about it, she said she had never heard of people feeling sick after getting the first dose of Zometa. She was actually surprised when I called her yesterday and told her I was nauseous. Usually the nurses are well versed on SEs. I'll have to tell her about this so she can warn other patients in the future.
Just woke up and I can already tell that I feel way better than yesterday. Can't wait to move taking Ibrance at night instead of the morning so I can sleep off some of the SEs.
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Rosie - Yes, on my new medication list, it was highlighted that I would feel crummy, almost flu-like. I remember feeling great that first day. But then later that night, I felt like a train had come and run me over. I was shivering and I could not get warm at all. At one point I got nauseous and was sitting by the toilet. It felt like chemo all over again. Fortunately it all passed. It happens with your first treatment. I've had six and the other five were fine. I didn't feel horrid afterwards. How did your Fasoldex shots go? I remember the nurse would bring out mine and I would stand/sit there with them in my hands warming them up. They always laughed. One nurse was skeptical and almost didn't give them to me. Maybe she thought I would bolt out the door with them. Silly. Why would I do that?
Pat - you always put a smile on my face.
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Hollyli1202 - I can’t tell you the last time I’ve had to get an injection in my tush. Didn’t know that’s what was going to happen until I was in the infusion room. Luckily I had my favorite nurse give it to me along with another nurse. Poked me at the same time as I bent slightly over a chair. I have heated seats in my car, so that felt good afterwards.
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SF-Cakes, For me, I wouldn't take Faslodex alone and save Ibrance for later, because once the cancer mutates it is endocrine-resistant and a bit of a crapshoot what it mutates to may not respond ss well to Ibrance in later rounds. Verzenio is different, it can work alone, can be used at any stage. There is a clinical trial testing this scenario that will say definitively what the difference is, but I would be concerned that the best shot at Ibrance response may be up-front
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Jaycee!! Are you still on Faslodex and Ibrance?! That would be terrific to know it can be OK to remain on Ibrance, and then be able to attribute the changes in the scans to what Faslodex is contributing. In the trials, the PFS for the combo was around 10-20 months, but that includes some who got it as firstline treatment, and those who weren't firstline would not have had prior Ibrance. Apparently Faslodex can also take time to fully kick it, it takes time for it to get in and degrade all of the estrogen receptor in every cell
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Rosie, I track my medical stuff on spreadsheets - dates, doses, SEs, etc. It's nice to be able to look back and remember stuff. (I love Excel! haha)
I'm getting Zometa monthly. My first infusion was rough with nausea and fever starting at about 4:00 AM the morning after the infusion. The second was better with less nausea and less fever. I really haven't had any notable side effects since then. Maybe a slight fever now and then, but not enough to worry about it.
I think I read about taking a Claritin the day before, of and after the infusion. My MO was fine with me trying that. She also gave me a script for Compazine to help with the nausea. I took it only the first two times and haven't needed it since then.
I'm really surprised that the nurse didn't know about the SEs of Zometa. I thought "everyone" knew that! Mine are really good about that - I heard them talking to a gentleman in the chair near mine about the SEs he might experience. One thing they ALWAYS ask is about upcoming dental work since we have to be careful due to the possibility of ONJ.
Good luck with your future infusions. I'm hoping that they'll get easier for you like they did for me.
Carol
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Cure-ious, yes, I am still taking Ibrance. Faslodex/Ibrance for three months (after almost five years on Ibrance/Letrozole) then "mixed" Pet in January. I am staying on that combo for another three months and will have another Pet. (MO said two months but we all know insurance will not pay for that.) So maybe April, another Pet. I am almost out of my Ibrance stash (only three months left) and I have no funding for future purchases. Gotta decide soon. Grant money is still tight but Pfizer is more generous. I am just REALLY tired of dealing with the money aspect. I guess if I switch to something else, the money aspect will still be there. MO mentioned Afinitor in Oct. but in Jan. said he didn't like it. He seems to be leaning toward Xeloda. Just ho-hum, this is what we do next. Your info that Fas takes a while to kick in is interesting. Maybe I can talk him into another three months.
Just think about this for a minute. We, all of us here, probably know more people on these drugs than our MO's. I asked my MO once how many patients he had on Ibrance. Two. I asked my nurse giving me the Fas shots how many she gives them to. Three. I know that many people here go to big cancer centers but I don't. It is a choice and I am happy with it.
Pat, I have two months of the 75 mg capsules left and one of the tablets. Not looking forward to that. Although your GI side effect is nausea and mine is gastritis. Hmmmmm.
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