Ibrance (Palbociclib)
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Cure-ious...what is Dee taking again? It's hard to keep up with everything on the board sometimes.
PS...thanks for your knowledge on all this.
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Cureious, it has never been painful for me. The dentist found it during a normal cleaning and he referred me to an oral surgeon. There are different stages of ONJ and mine is stage one. The later stages are when the gums get infected or the area spreads. They normally don't do surgery on early stages so he put me on chlorhexidine to help avoid it from getting infected. The gum will eventually heal under the dead bone and cause it to be pushed out. It can take over a year for that to happen. I'm just hoping it doesn't spread and get worse.
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Thanks, Simone, that is good to know! I have a bumpy area/little ridge on roof of my mouth I wonder about, it doesn't hurt but I don't really feel one on the other side..
Jack5ie, Dee is taking the new CDK2/4/6 inhibitor from Pfizer, waiting to hear how she is coping with side effects!
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Cure-ious: My MO switched me after a few months taking Xgeva monthly to every 3 months for the same reasons you mentioned. My question is how long do we need to stay on it? Is there a point when we no longer are receiving benefit and it's causing more harm then good such as OMJ. Or do we need some type of bisphosphonate for life due to bone mets.
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42Young - congrats on good scan results!
RK2020 and Candy - checking on your recent scan and/or MRI.
JACK5IE - thanks for posting the article on the Ibrance trial.
Karenfizedbo15 - did you have a recent scan? Hoping your recent pain/pressure is something else and goes away soon.
Cure-ious - as always, I thank you for your assessment of treatment and help in analyzing the drug trials and what that means for us.
Wandering - good to see your post, hope that chemo is helping.
RRabbit - we miss you girl! Hope you are doing great.
I had a petscan on Friday as well as my blood test to check WBC for my next cycle of Ibrance. I see my Oncologist on Monday but the nurse called me and told me over the phone that my PetScan was all clear, no sign of any disease. This is my second "NEAD" pet scan and 10 months after starting treatment. I will wait to review the actual pet report with my oncologist but I am relieved and happy. WHC was over 1 so I started cycle 12 of Ibrance!
I had a bone density scan last month that I will review with my oncologist as well. I have not taken any injections for bone strengthening although do have bone thinning it doesn't read like I have osteoporosis at this time but will see what my oncologist has to say. Reading about the ONJ reminds me that treatment often has it's issues .....
Sad about Lucille Ball's great granddaughter - tragic to die so young.
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Thanks Aprilgirl for checking on me. I just had the MRI yesterday. I should hear something this week. The initial plan was to do this MRI as baseline and repeat in 2-3 months and compare the 2 (as I have never had a liver MRI before). No change in treatment yet. That is the plan. I guess if yesterday's MRI shows more than the 1 new liver met, then the plan changes.
I too have wondered about RK2020's scan report.
Woohoo on your NEAD results!!!!!
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Hi Candy, I forgot your MRI was just yesterday! Let us know when you hear.
I am very happy about my results but it was a quick call from the nurse (which I appreciated - I asked her to call me if they had results on Friday so I didn't have to wait until Monday - she told me not to expect a call but...called!). I like to scrutinize the pet scan print out and compare them to past pet scans and usually have tons of questions for my oncologist so will feel better after that appt.
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Candy , I was thinking about your MRI, I hope you’ll get a good result and that you don’t need to change the plan.
April I am happy for you, congratulations on great news!!!!! I actually can use your help, what questions you will ask your MO about your recent Pet ?
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I-beat-it - I probably am over doing it BUT I have print outs of my past PetScans (first one was last November 2019) and I like to have them all out and compare because sometimes one will mention something and then not mention it at all 3 months later - did they not see it or just skip it? Most of the original issues they write "previously describe superclavicular lymph node conglomerate is no longer visualized" or "resolved" , something like that. June 29th petscan has this note "left parasternal focus of mild fdg avidity without CT correlate is non specific and may be artifactual " so I want to see if that is mentioned this time. The scan from past Friday's write up/results is not in my MyChart yet - they won't upload it until I have met with my Oncologist. Sometimes when I have these questions about notes that show up she will email the radiologist for clarification. She is pretty patient with me (as she should be!). Another example is my scan in March noted "mild update of fdg in adrenal gland, may be artifactual" was not noted in the previous pet and hasn't been noted since. WTH! I literal hang on every word of these reports and my oncologist's explanation of them.
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April, thanks a lot, I like this strategy to get answers from oncologists. My MO releases results on mychart right after they are ready but will not let me to have prints before met him, one is good other is annoying. So I guess smart way is to write down all the report and my questions, well-equipped for the meeting!
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Yes Aprilgirl, had scan on Fri and results on Wed if the the report is done by then....
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Candy678 - I’m waaay behind on reading this thread! Life is hectic right now Thanks for asking about my PET. I had mostly good news. The mets in hip and sacrum are continuing to diminish. And no new mets. That’s always good news! T11 is getting hotter. We are going to wait until my next scan to decide if we need to make changes. I’m comfortable with this plan. I just arrived in Florida so my Moffitt MO can also chime in on what she thinks of my scan when I see her later this month.
If you recall, I’m on 75 mg and was really happy with the way I felt. My ANC and RBC however, are starting to struggle again. I finished my 3rd cycle of 75 (overall cycle 7) and after 7 days my ANC was 860. I was put on hold for an extra 7 days and go for a blood test tomorrow. Im confident that I’m now above 1000 but I have a feeling that Ibrance isn’t for me long term. Each of the 3 cycles on 75 have my blood counts going lower and lower. After chemo 4 years ago, my WBC went back into normal range but always stayed at the low end and never recovered back to what was my normal. And my femur tumor likely compromised my blood marrow so I don’t see Ibrance working long term. I don’t think a schedule like yours would work either. I’ll talk with my Moffitt MO but my northern MO would like to switch me to Verzenio. I really really don’t want to start off Verzenio at the highest dose. I had way too many side effects with Ibrance 125 and diarrhea isn’t my idea of QOL. I want to be able to exercise in a pool and enjoy life. Im all about quality over quantity. If I have to switch, then I’m going to have to be firm with my doctor. It’s my body, my life.
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I was just switched to 100 after 4 cycles of 125. I'll be on hold for 14 days, then will have my blood work (CBC) done on Wednesday. If my ANC is acceptable, I'll start the 100 mg tabs. I got a call from the original pharmacy that filled my first prescription about filling this one. I was switched to another specialty pharmacy after that first cycle, so I don't understand why the first pharmacy called me again to fill the prescription. Weird.
I'm also having it delivered to my local CVS, because when UPS delivered my second cycle, they just dumped it at the top of my stairs leading to my porch. It was in the hot sun, in plain view of the street, with no ringing of my doorbell. With the cost of this being $14,000 per cycle, I decided to have it delivered to my local CVS. I can pick it up at the drive-through.
Here's hoping the 100 mg is better for my ANC and other counts.
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RK2020- mostly good news on your scan is good news for sure ! I'm sorry about the low ANC on 75 mg of Ibrance.
Sunshine99- I went down to 100mg at about the same time for the same reason and 100mgs has been easier on my ANC. I can't believe UPS just threw the package of Ibrance on your steps And didn't bother to ring to ur doorbell. I can't imagine working with insurance to have a replacement covered if someone decided to steal it. Good idea to have it delivered to CVS. My insurance makes me use Accredo and they used to text me when ups delivered but that stopped randomly . I called for my refill and asked them to set that up again.0 -
I received an e-mail video "how to remove the Ibrance tablets". I am no longer on Ibrance but find it interesting that they need instructions on how to remove the tablets from the packs.
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Decent news for you RK2020! Sunshine that’s a shocker re your delivery. Over here we have to personally collect Ibrance from the cancer care centre hospital pharmacy. They will not send it to another pharmacy or even allow the nurses to bring it to clinic ( which is outreach in my local general hospital), never mind sending it through UPS...Loads of protocols to follow too!
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Cross posted with Liver Met Thread.....
Ok guys, what do you think of this??....
I have had CT's the entire time (3 years now). The CT reports always discuss the single met and what the measurements are currently. And say "no other liver mets noted" or something like that.
Now I had a liver MRI.
Got a message from nurse today. 4 spots seen. Original area at 12mm. And 3 more at 6-7mm. Nurse says not considered progression. Because MRI more sensitive than CT. This was a baseline MRI and we will repeat in 2-3 months and compare the 2 MRI's. If growth, then considered progression.
Thoughts......
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Candy, No surprise, MRIs are more accurate for number, size and actual location, they use that data to pinpoint the radiation...
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Hang in there Candy678. As Cure-ious said, it’s not surprising that the MRI showed more, I’m just sorry that you have to wait and see. I know the waiting can be tough - sometimes, for me, the waiting is tougher then the knowing. Hugs.
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Thank Cure-ious. No radiation or intervention discussed at this time. I had a CT with the new MO/facility and the radiologist saw a 7mm spot not seen when reviewing the CD's of the CT's from the other facility. So they ordered an MRI for a better look.
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Cross posted from Liver Met Thread.....
Ok, so thinking about this today since I heard from the nurse. I always thought I had 1 liver met--- 8cm when found. All the CT's locally have talked about that 1 met. I have focused on that 1 met. We biopsied that 1 met in the beginning. It has been all about that 1 met. Now, I did MRI and there are 4 spots. Those might have been there since who knows when, the beginning even. Since we have not done an MRI before.
So, question.... I guess the 3 other spots are cancerous? I mean makes sense. The original 8cm met was biopsied and was MBC, so not a stretch that the 3 other spots are cancerous too--- broke off from the original big one. Is that the way we should think? We cannot biopsy the others--too small for now. So assume that they are MBC too???
Thoughts.
This has me thinking in a new way---4 spots, not 1.
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Candy I think maybe just hang fire for a tiny wee bit until they confirm a plan for you? This info will be new to your team too, plus you have a new MO. It’s surely a good thing that they’ve acted so quickly to get you the MRI and far more detail. Really really hard, but spots are just that ( I had about 4 in my lungs too so I get your anxiety), they aren’t recognisable tumours.
Again, hang in there and give them a chance to work out what to do.... of course if they piss about then kick ass!
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Candy -- Wait. You said original area is at 12 mm -- I think that's 1.2 cm. But you originally thought it was 8 CM? That's quite an improvement. As far as the others goes, I agree with Karen. Let your doc do her work, but even if those spots are "cancer" they may not be vascularized. My other spots are just sitting there and doing nothing. I don't know if they ever will, but we know they are there so we can watch them.
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candy, it is standard procedure they monitor you every 2 or 3 months by mri to see if any changes happen. Ct scan machine in new clinic perhaps is more advanced to capture that small shadow, and yes MRI is more accurate than scans. I guess curious shared a study that saying about 20% growing is not considered as progression.
I hear you and understand your frustration, I have to take MRI of my spine every 2 months for 3 rounds now every 3 months and took brain MRI once, next brain mri in about 6 months because they’ve seen some spots in my cord/ epidural so they monitor them to capture any changes.
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Karen- I agree to hold off for now and continue treatment as is. I do not want to change treatment too soon. Will see what next MRI in 2-3 months says, and I guess we will do MRI's from now on versus CT's. I have not seen typed report yet. See if they label them as spots, tumors, etc. They are 6-7mm in size.
BevJen- Yes original tumor was 8cm. I have the CT report from then to prove it. Went down to I think 3cm early on and shrunk more over time. Been stable at 10-14mm for a while (measurement varies depending on the rad reading the CT).
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Well ladies that seems to be it for me with the Ibrance dance. Small pleural effusion with 5mm node and another nodule in lining and my MO says we switch treatments completely to Faslodex / fulvestrant only as of tomorrow. Any hints on how to make those injections bearable gratefully received.
She says scan in 3 months and if not working it’s chemo. Also that the chances of this working for as long as Ibrance Letrozole have for me ( 28 months) aren’t great. We just need to wait and see how I go with it.
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Karen,
Sorry to hear your news. I hope that Faslodex works well for you and that you get another 28 months from it.
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My wife is working on making a switch to abemaciclib, if it is approved by Eli Lily's compassionate use program. While ibrance is still working, she would like to try abemaciclib and perhaps be able to use a stronger dose and with less suppression of her blood counts. Approval is pending. She just had a pet scan, and the ibrance seems to be still working, but this could be her last chance to switch, as they won't permit a switch if ibrance fails.
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I'm picking up my new dose of the 100 mg tabs of Ibrance today. Getting my bloodwork done to see if I can start it. I have an un-opened full cycle of the 125 mg tabs in my cupboard, but I guess it's going to sit there.
I was hoping I could just finish out the 125s, but since my ANC wouldn't come back to over 1, I'm going to be starting this new dose. Had to take a 2-week break. This is cycle 5 for me. Here's hoping this works...
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Karen,
Sorry to hear about no more Ibrance and the new lesions. But faslodex/fulvestrant isn't a bad treatment. I started out just on faslodex bc I was having a local procedure and they didn't want to start Ibrance until I was healed up from that (blood count caution).
I may be one of the weird ones, but I don't mind the shots in the butt. My nurse does them on the upper part of my backside, not smack in the middle where you sit (I think that's common). I'm sure you've looked at the tips, but the important ones that I can think of are: make sure they heat up the faslodex vials (they can either use their hands, you can put it under your arms for a bit, or they can use those warming pads that are disposable). It's very thick, so if not warmed, hard to get in. Put all of your weight on your leg NOT getting the shot, then switch. If you feel any stinging, then tell the nurse to slow down. It should take at least a minute to go in (sometimes longer). I usually try to walk it off for a bit before I get back in my car. And I know that not everyone does this, but I ask for cold packs for my drive home (I live about 50 minutes from my cancer center). I think it helps.
Interesting that they are switching you just to faslodex. In the US I've heard of some folks who still stay on Ibrance, ditch the letrozole, and then add the faslodex along with the Ibrance. I started Ibrance with faslodex bc I had been on letrozole for many years (2006-2019) and the consensus was that I needed another estrogen suppressor.
Good luck. I hope this treatment does the trick for you.
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