Ibrance (Palbociclib)
Comments
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Sondra, I forgot you are in the UK. I don't know your political persuasion but say your last name is Cummings?
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Ah good to know. I have some cloth masks on order that should arrive before I have to go and I am looking forward to trying that out vs the medical mask thing. Unfortunately the whole face covering situation especially in a hospital setting has been politicized here in the last day or two, so I may not get a choice, but you don't know if you don't ask! Also - the new regulations are supposed to come in to effect that morning too so... who knows!
Jaycee - ugh, THAT guy. Im pretty sure hes rather universally hated across the country now for that stunt he pulled. And he's getting away with it too! Diversionary tactic... but really, the whole virus thing will be diversionary by winter when Brexit hits.How very convenient.
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Hello dancers
First, to those who have progressed Intolight, BLMike's wife etc, I am so sorry. I hope those moving onto new treatment from Ibrance will still drop by and say hello and I wish all the best on decisions being made goig forward
To those with stable and NEAD scans congratulations! Congrats to Jaycee, may the long run continue. You and Micmel and others continue to amaze me with very long runs on this drug
My tele MO visit went well. Tumor markers are "stable", up 5 pts from last month. They jumped in February and continued to go up, last month I was down 11 pts, I'm up 5 this month. MO considered that stable. In office visits resume for me next month and my every 3 month Zometa starts up again at next appt as well. My pain level has gone down alot. Haven't taken a pain pill in a month. This past month has been the month I've really noticed a difference. I was really concerned pain wasn't leaving for months and then at the end of cycle 6 beginning of cycle 7 something happened. Been afraid to jinx myself saying things are improving so was convincing myself just temporary. And while in the scheme of things it is true, I'm just so happy to not be hurting as much as I was, it was really awful. I'm really glad when things jumped in february we didn't abandon Ibrance too soon. We are not doing scans this month. MO's reasoning is to keep me away from the cancer center and living my life as much as possible. As curious as I am (last scans were in february), i think scans would add unneeded stress right now, I am sure scans will happen soon, but honestly I'm happy to avoid them. Avoiding that chalky barium in faux berry and banana sounds great!
I'm 5 days away from finishing cycle 7 at 125mg. Cycle 8 will be the tablets, I'm curious if I'll notice an after taste that Jackie noticed. Anyone on the tablets notice a difference in side effects? My cutter of muffins has been in overdrive lately, can't cough and try to cover it up when out and about, that freaks people out now and invites stares of horror visible even through a face mask. So i've resorted to the grocery store shuffle, where you pretend like your grovin to the song over the intercom and when whoever's singing hits a high note, pop goes the weasel.
I had been in a rough spell and away for awhile (emotional) - but think I'm in a better place now. Take care ladies and gents0 -
Hi, Radagast!
I was wondering where you were. Glad that you are feeling better and that Ibrance is treating you well.
You asked about the tablets. I've started them this cycle. Honestly, I don't taste or smell anything (I'm on 125) and I actually like swallowing them better than the capsules. I think the packaging is absolutely ridiculous (it's way overkill and it must cost a lot) but I don't mind them at all. My only complaint is that the packaging takes up so much room -- it's rather bulky. No real difference in side effects -- for me, it's still the fatigue and that hasn't gone away or changed significantly.
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Ibrance Users - have any of you noticed a difference in tablets vs capsule? Some have posted that they stink and taste bad. I start tablets at the end if the month. So far Ibrance capsules seem to be working. Tumor shrank from 2.3 cm Sept 2019 to 7 mm April 2020. Food/fat was very important to the absorption of the capsule, but not the tablet. So what changed? Will the tablet be as affective? I guess a question for the pharmacologist.
Candy678 - there is nothing wussy about cancer, the drugs, and the nasty SEs. I think I had neulasta with chemo 4 years ago. I remember fatigue being a huge issue at times, as well as stress/anxiety, but not pain. But everyone's experience is different. If it is given so often, and that pain is a common SE, that non-invasive , methods or even low key drugs/"alternatives", would be an option. On the marijuana/CBD forums some people post about positive results from CBD, with/without THC. I tried CBD (with and withut THC) for sleep issues, but did not find relief. I have found acupuncture good for stress/anxiety, and sometimes it even gives some relief from the joint stiffness/pain from the Arimidex.
Husband11 - Any good links for melatonine? An ND suggested I take 20mg/day. Not for sleep, but at least in one study, it seemed to help BC patients. I have been taking it for about 6 months now, along with other supplements. Also cut back more on sugar, since cancer feeds on it.
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Question for group on the capsules versus tablets--- I have capsules left in my bottle, but I got tablets in my shipment this time. I don't want to waste these expensive meds. I asked the pharmacist if I could use up the capsules and start the tablets mid cycle. Same drug. Pharmacist said yes. What do you guys think? I know that the packaging is meant for a cycle-- 3 blister packs for weeks #1, #2, #3. I just don't want to waste what capsules I have left from the old bottle.
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Candy,
Well, thanks for that info -- because that's exactly what I did. For the first 6 days of my cycle, I took the capsules that I had from a shorter cycle while traveling -- and then I started the tablets after that. I'm not sure when it will even up, but I figured it was fine, and I'm happy to know that your pharm said so too.
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candy678 - why would you not finish the capsule cycle, rest 7 days, then start tablets ?
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I had to wear a mask during my CT and Nuclear bone scans. It didn't occur to me to ask not to wear it. I was issued one when I walked into the hospital and kept it on. All the staff, of course, also had masks on.
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BlueGirl- Over time, somehow, I have capsules left. Let me explain better--- I call for my refills in plenty of time each month. Good thing as sometimes there are delays with the pharmacy, Fedex, etc. So I don't want to wait until I am too low on meds. So when the new bottle arrives, I finish out old bottle then open the new bottle. So I do not start out each cycle with a new bottle ( as one would think one would do). Does that make sense? It is the same with my other meds--- blood pressure meds, Pepcid, etc. I get the refills in plenty of time, finish out the old bottle, and move to the new bottle.
I could start this next cycle---- the Neupogen/ hold Ibrance saga of the last week (see posts)--- with the tablets, but then I am wasting the 6-7 capsules I have left in the bottle.
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I too kept my mask on during CT and bone scans. MRI would be worse, I think. I get kind of creeped out with MRI's anyway. I would probably ask if I could pull it down if I was having an MRI.
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Hi Miss Rabbit! So great to hear from you! Glad you are doing better.
Your muffin stories always crack me up!
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RRabbit - so good to see your post! I, too am starting cycle 8 next week. I just finished the new tablets. I hate the packaging - I keep them in my purse and the packaging is bulky.
I was reduced to 100mg at the same time as I started the tablets. I never had significant side effects (occasional mouth sore and constipation) but both seemed to be less last month, most likely due to 100 mg vx 125 but who knows.
I will have a petscan at the end of June and think I will keep a mask on! Good idea.
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Sondra, I had to leave the mask on the 45 minutes while waiting for the meds to distribute throughout my body (even though I was in the little room alone) but they had me take it off during the scan. They said it was because I could breathe easier and slower so I didn't move as much.
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Radagast, so very nice to hear from you. I’m so glad you’re pain is better and also that you have landed in a better place.
Hugs, Penny
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Hello Ladies, I was switched from Ibrance capsules to tablets this month. I totally agree on the packaging, it is so bulky and I have a hard time pushing the tablets through the cardboard back and then paper to boot! I also think they have a bad smell. I push the tablet into a small paper cup and then with one hand tip it into my mouth followed by a glass of water in my other hand so I really don't taste it. I go for a scan on June 15th and hope I don't have to wear a mask during it; I am very claustrophobic and hate having my mouth and nose covered. Can barely tolerate an MRI.
I hope everyone has a good Sunday! Love you all.
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My bit of advice for the mask-during-scans situation:
Wear your mask until you're in the room with the technician (who should be wearing a mask too).
Make sure all the places you'll touch are covered with sheets or towels.
Take off your mask right before the test begins and if you're asked to put it back on, refuse and say that's just too uncomfortable a prospect for you to consider.
If they insist, insist right back. They are not going to deny you the test because they have a really expensive block of time set aside for you.
Be as much an advocate for yourself as you would be for a child you love.
PatGMc
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Hey BevJen
Yeah I took a hiatus, I needed it. Had to work through some things.I do want to agree that the Ibrance packaging is overkill. Also not really convenient in that i keep my Ibrance in my purse like aprilgirl that way I always have it with me (along with my exemestane) so there is no mad dash home because "its time to take my pills and i left them at home". Makes spur of the moment decisions easier. Thank goodness I carry a big purse in the spring/summer, but the winter might be interesting carrying all of it, might need a new winter purse
Jackie - its my biggest side effect outside the mouth sores and the fatigue. When its loud and long enough to draw my husbands attention and laughter 2 rooms away with fans and air conditioners going, its noteworthy lol :)I figure some else out there might wonder where the william tell overture al a booty is coming from, its Ibrance, all Ibrance and I'm sticking to it!
Regarding masks, I've had to wear them for my blood draws, hate it. I feel like like dark helmet from Spaceballs wanting to shout "I can't breathe in this thing!" - so claustrophobic.
If wearing a mask during a scan is asked, I'd decline and say i'd be happy to wear one before and after but not in it, you won't get good pictures if your asking me to suck in my gut whilst smothering me in a mask. I hope the mask wearing phase will die down soon, it just feels so un-natural and its summer. Humidity, summer and face masks don't sound like a good combination, hope it doesn't cause people to pass out etc.
Thank you for the welcome back BevJen, Jackie and April
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LOL RR - oh god I'm never going to forget that image the next time I tear that mask off exiting hospital/Tube/name a place. But that is exactly how I felt the first time I had to stick a mask on a few weeks ago in order to get a blood draw (and my blood pressure taken!). We went to a house showing last week and we were required to wear one for that!
Thanks for all the thoughts ladies re: scanning - I am hoping/expecting the MRI is the scan where I am half hanging out of the machine, but I don't breathe well anyway flat on my back so who knows how this is going to go. That hospital services COPD patients too, though, so I'm hoping there are some protocols for people who just can't handle it.
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My favorite free standing imaging office has an open MRI machine. I sit up and can look around. No flat on my already hurting back with that tube inches from my face. Much better. I did wear a mask last week there, as did rest of staff
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Thereishope- What happened with your scans? Results?
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Thanks for thinking about me Candy. I have been following your updates. Hope your pain has eased and you are back to the routine.
I was so nervous getting the result. Cried as usual with all the emotions. Luckily is good news. Same as the last result in April, nothing was worth noting according to the report. Considering numerous spots were found in my lung lining (mainly) and a few in the bones and liver 2.5 years ago, this is a miracle! I happily celebrated this week by deliberately eating some junk food and cookies
Next week, reality will hit again and I worry about the next scan 
Thinking about you all. Hopefully my story can give hope to others as many of you have given me.
Hugs
Thereishope
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Thereishope, great news. Celebrating here with you!
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great news Thereishope!
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Thereishope- I am feeling better. I had 2 days of horrid bone pain and headache. I get the CBC in the morning, so hoping my counts are great and I can restart Ibrance (over 2 weeks off). Woohoo on your results !!!!!!!!!! Give yourself some time before thinking of the next scan. Hugs.
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Sandibeach- I have you down for MRI in June. When?? I didn't miss the post about your results, did I?
Trying to keep up with everyone's scans.
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SERDs have been shown to be effective even on cancer cells that have become resistant to AIs, such as those expressing ER (ESR1) mutations. Interestingly, the newer SERDs are also effective inhibiting the growth of cells that have become resistant to CDK4,6 inhibitors, so these are truly attractive for treating endocrine-resistant cancers:
https://pubmed.ncbi.nlm.nih.gov/31852484/
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A new inhibitor of CDK12 was just reported in Nature, a compound that causes degradation of its cyclin partner. We don't have CDK12 inhibitors in the clinic yet, but in principle this would make MBC sensitive to immunotherapy..
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thereishope...wonderful news!
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Ok... Just got the call from my MO's nurse. Drumroll..... After 1 dose of Zarxio and 2 weeks off Ibrance, ANC 1500 (1.5) so I can restart Ibrance cycle. But..... MO wants to recheck lab in 2 weeks. Good grief. Nadir of Ibrance is day 15 so I will be lower again, how low I don't know. Will the MO freak out again. Seems she wants me to use Ibrance as my scans are stable, but she wants my ANC to stay within normal range. Ain't happening. So... we will see how low I go in 2 weeks and pray that my MO will be ok with the number. I don't want to move from Ibrance when it is controlling the cancer just because my MO doesn't like my lab numbers. And I don't want to take Zarxio all the time when the literature doesn't even say to use it with CDK 4/6 inhibitors. I have been fever free and no signs of infection. And I have had these low numbers for the 2 1/2 years I have been on Ibrance (nothing new). Why the freak out now????!!!!! Well, 2 weeks of back to normal treatment.
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