Ibrance (Palbociclib)
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After taking two weeks off ibrance because she wasn't feeling well, both of her tumor markers have gone down. Go figure. Who knows how things work in the real world? She has been on ibrance for approx. 2 1/2 years now.
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Husband,
Hey, I would take that news. That's great, and gives you incentive to figure out what's going on with the other stuff.
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Insurance approved next scans--scheduled for CT and bone scan on Feb 5. Time for scanxiety.
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You'll be in my thoughts and prayers Candy.
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Happy friday and best wishes to everyone!
Sending good thoughts and positive healing energy to those receiving scans, news, surgeries and procedures coming up.
I am doing well - still awaiting petscan approval. Got a friendly message from my insurance company that the petscan (originally ordered on 12/16) is now in an appeal process which can take 30 days. Someone will call me from the appeal office that is assigned to me to discuss, at some point. What a CRAZY criminal thing! Like seriously how does someone with STAGE 4 MBC get denied a petscan? And then the process gets dragged on and on and on. I am kinda losing my shit feeling frustrated but also I do not want to add any unnecessary stress so I have to let it all gooooooooooooooooooooooooo....
Anyone else dealt with this ever? It seems like some folks get regular petscans as their scans. Why am I being denied? The story for me goes that I had an MRI and nuclear bone scan that show progression but the CT scan came back that there are no major changes. We want the petscan to try and make sense of the whole thing. I am on Keystone First so on one hand I am able to have zero copays for medications and visits with specialists (like my MO) so that is all incredible but on the other hand, apparently Keystone First is QUICK to deny petscans. Maybe I seem too healthy for one to them? So confusing!
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Question about Ibrance: I know that folks have reported that they have different symptoms in different cycles. I am right near the end of my pills for cycle 6 -- tonight is day 17 of 21. I have figured out that each cycle, around day 13 I have been pretty wiped out. Last cycle, I also picked up a stomach bug around that same time. Told my onc when I saw her -- she said my white cell counts were "a little bit low" but she didn't think they were too bad and that I could fight off stuff. So this month, I got one and a half (one larger, one smaller) mouth sores. Have been managing them with peroxyl. Two days ago I came down with some sort of a cold/throat thing. It's getting better, but I'm not crazy about picking something up every month. I also think I've been more tired this month. I have bloodwork next Tuesday for this month.
Has anyone else had this kind of thing with Ibrance -- picking up things month after month? And have you convinced your MO to lower your dose because of it? I'm still at the 125 level and have been since I started in July.
I may be overreacting, but I just was wondering what others have experienced. Thanks in advance.
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BevJen
How are your tumor markers doing after 6 cycles on Ibrance? I just finished 1st cycle
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Imagine,
My MO does ca27-29 and CEA. We did not do a test prior to me starting I/F (because I think that neither the MO nor the NP thought to order them... sigh). But I had had local liver treatment (microwave ablation) in early July, and that can apparently make them go up. So, given that picture and numbers after that local treatment, my tumor markers are coming down. I am nowhere at normal yet, or even close, but the 27-29 seems to be coming down between 30-50 points a cycle; the CEA has been slower, but it's also coming down. When I inquired about that one, my MO said that it tends to stay higher if you have liver involvement, which I do.
I will tell you that last month, right after I had my stomach virus, the CA27-29 went up about 14 points from the previous month. However, that is consistent for me -- my TMs tend to go up a little bit if I am sick or am recovering from something. The MO described that rise as "stable to slight."
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My wife has experienced the same thing, slight rises in tumor markers when she is sick.
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Hmmmn Bevjen. I've been on I/L since May 2018 - the SE's and fatigue vary from month to month. My team assure me they are not cumulative, so every month can be different. Sometimes I am very tired in the last week and other times I'm fine. Sometimes my joints are sore other times fine. Bowels the same. I use a chlorhexidine mouthwash twice a day to stave off the mouth stuff. I'm on 75 mg and a 3 week on and 2 offschedule as my body can only cope with that dosage!
I think that's borne out by what others say too.... ladies and gents?
State of mind and stress levels def impact on the SEs IMO! We don’t do TMs in the UK it seems....too unreliable I’m told
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For the newbies...I have been on 125 mg from the beginning since June 2016. My SEs do still vary but by now I know what to do, and no, they do not accumulate. Sometimes I am achy, sometimes not. My fatigue is worse in the middle of my pill cycle. I eat Greek yogurt everyday to avoid mouth sores. My tumor markers vary too much to be reliable so we only look an long-term trends. I get a PET scan every 3 months--no MRI or bone scan so perhaps that is why I am approved so consistent. (I have bone and liver mets.) It is good to compare the same types of scans. I did go to 6 months in between scans until I started slight progression last Fall. Next scan is in 2 weeks. I was getting sick often because I live with my granddaughter who attended pre-school, but I now watch her full days so she has been healthier and so have I. we have discussed dropping to 100 mg because my fatigue is worsening and I don't recover well. I try to walk a little every day and I do know it helps to stay active. I got a Zometa infusion today so we will eat out so I won't have to cook. I am 66, retired, and spend a lot of time in the recliner crocheting and reading, when I am not chasing the 4 year-old that is. I do travel occasionally and refuse to be house-bound. You can do this.
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Philly, I learned yesterday that several large insurance companies have extensive departments that perform a cost/benefit analysis for medications and medical interventions and develop guidelines on what they consider sufficiently cost effective to cover. Apparently Blue Shield and Kaiser share one of these departments, and it appears that they have deemed PET scans to be cost effective for MBC patients, so people who are insured through these two companies seem to have less trouble getting PET scans. Other companies including yours appear to have unfortunately decided otherwise, and make patients jump through hoops to get PET scans approved. I have a feeling that regular PET scans for MBC patients probably save the insurance companies money in the long run, but nobody is asking for my opinion...
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Piggy, unfortunately, it is the doctors who have to jump through the hoops. They may have to fill out an extra form, write a longer justification, or make a phone call. Patients have little control over this. Some doctors are willing got do it, some aren't. My MO office has a PERSON who does this but it always involves some intervention by an MD.
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Piggy- I did not know that about bone marrow mets nor about the insurance companies different approaches to PET scans- Thanks!!
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A remarkable story was published this week- investigators at the Broad Institute (MIT) scanned 5000 FDA-approved (non-cancer) drugs for their ability to inhibit the growth of nearly 600 different cancer cell lines. They ended up finding almost 50 drugs with cancer-killing ability, far more than anyone had suspected. For example, cancer cells resistant to chemotherapy could be killed by the dog anti-arthritis medicine, tepoxalin. They are expanding the screens to test more FDA approved drugs and to identify the molecules that are targeted by each drug, so they can establish cancer biomarkers that would predict sensitivity to each drug. Awesome.
https://www.sciencedaily.com/releases/2020/01/2001...
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OK, confession time ! Now try not to drop your jaws!
I intentionally decided to skip a dose of Ibrance! 😬My defense is that I've been feeling really fatigued since I started my 7th cycle 9 days ago. I'm on 125mg and all of my RBC numbers have been dropping steadily. . Onc said that she would've dropped my dose last week but I had already received my next month's supply. She went on to say that that I'm starting this cycle lower then the previous times and that they'd probably drop more. She feels pretty strong about me needing to decrease to 100mg on the next cycle and I'm fine with that as everyone mentions it as being just as effective as 125mg.
I shouldn't play doctor but I thought that skipping a dose may help in slowing the decrease of RBC's and get me through until the next cycle. lI'm praying that I get through the weekend without any further decline but if I'm still feeling punk along with brief periods of stomach pain when I ambulated, which I've had for awhile, then I'll call my Onc on Monday and request a new blood work.
Anyone else try this bird brain idea? 🙃
BTW if things aren't cumulative then why do my numbers keep dropping?
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Ginny02, my wife took 2 weeks off ibrance last cycle, entirely of her own volition, without telling her oncologist. She was sick with the flu, and simply decided she had had enough. We were worried we would see higher tumor markers, but instead saw lower. It improved her neutrophils and platelet counts, but for some reason her hemoglobin is continuing to fall. She just had a bone scan, and they saw nothing to indicate progression to the bones. So that is still a mystery, but the taking an extra week off turned out to be a good idea, she feels a lot better.
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My oncologist has told me many times that if I'm feeling really bad, or get a fever, or just need a break, to go ahead and stop the Ibrance for a week. People delay their cycles all the time for low counts, so missing a week won't do any damage...
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I am on my 40th cycle. I was dropped from 125mg to 100mg after the first six and down to 75mg around my 30th. I had a couple of longish breaks last fall due to major dental issues and then needing surgery for my broken wrist. Fatigue has been my constant companion. Otherwise I had a stretch of about 6 months, after I was switched from anastrozole to Letrozole with other weird and annoying side effects that came and went — watery eyes, hair thinning, burning scalp. Those mostly abated long ago. Overall it's been very tolerable and I count my blessings! I hope this is helpful!
Curious great post. Wow! Maybe science and technology really will kick this things butt
P.S. Ciaci are you also de novo?
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Penny, I was diagnosed de novo in May of 2017, with one met to my spine. Started Ibrance 100mg/Letrozole in August 2017 (incompetent first oncologist had apparently never heard of Ibrance, hence the delay). Have been NEAD for 2 years now.
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Has anyone figured out what the best time to take Ibrance is...morning, noon, night? I will be starting it as soon as it comes in so probably next week. I didn't know if you all thought that a certain time of day worked better than another. Thank you.
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Cure-ious, thank you for the link - those are some beautiful results. What I would have liked to see in the article is whether anyone is doing anything to translate these exciting scientific findings into clinical trials and ultimately FDA approved oncology drugs. For the drugs on that list that are already human-approved for a non-oncology indication there would be very little incentive for "regular" (i.e., for profit) pharmaceutical company to conduct clinical trials and get FDA approval for the new oncology indication. The way patent law and FDA regulations are set up, they would never be able to effectively block out generic competitors and recover their expenses, let alone turn a profit. For the drug that is only approved in dogs, things look slightly more promising, and the first company to secure human FDA approval would enjoy some exclusivity and opportunity to turn a profit. However, because the Broad data is publicly available and multiple companies could be working simultaneously to get that first approval, there's no guarantee for any one company that they will be the ones to win the race and recover their costs. I would wager a bet that most pharma executives would be weary of taking that risk.
These types of data provide a very strong argument for some type of public funding for clinical trials, especially in the area of re-purposed drugs, where the costs to the government would be much lower than for a traditional drug development program. They already have the compounds and in-vitro efficacy data. They probably have a pretty good idea of the pharmacokinetic parameters and safety issues. All they need for most of these things is a phase III efficacy trial. Which is not a trivial cost, but oncology trials are often smaller and shorter than, say, a cholesterol-lowering phase III trial. The NIH has the expertise and could run the trials and the government would have new, inexpensive drugs to treat life-threatening cancers. Shall we bet on the chances that this administration gives the NIH the budget it needs to do so?
My more realistic hope is that the Broad data would spur some philanthropy-minded billionaires into action to help bring these medicines to people. Something like the Parker institute, but not limited to immunotherapies.
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Hi all. Reading your great posts and good conversation going.
Philly- Sorry you are having issues with your insurance company about the PET approval. I too believe that MBCers should get whatever scan their MO feels needs to be ordered. Insurance companies are crap. I had a PET at diagnosis of the MBC-baseline PET, along with the baseline brain MRI. Since then, we do every 3 month CT's to monitor. I wanted a PET for the 1 year anniversary to see how it looked after 1 year of treatment. Insurance company denied. Said when progression is shown on CT they would reconsider. I had slight progression to liver met on Oct 2019 CT, so then Yes the insurance company approved PET in Nov 2019. Insurance companies have the power, not the patient or the MO. I certainly cannot pay out of pocket for these tests if the insurance won't cover them. So, our treatment is in their hands.
BevJen and others with discussion of Ibrance side effects month to month-- I am on Cycle 26. 75mg for all but first couple of cycles (doc switched to 75mg early on due to ANC numbers around 400). Fatigue is constant for me. No rhyme or reason. Any time in cycle, and also on week off. I have had just a couple of mouth sores here and there. Aches and pains--Letrozole culprit or Ibrance or both. Constipation. Hair thinning. Most listed things are constant, not come and go. This is my 3rd winter on Ibrance and low ANC numbers (ANC 900 after the week off). Knock on wood, I have been cold/illness free. But I am a germaphobe. I wear face masks in public and carry bleach wipes with me. I do not shake hands at church. And I wash my hands a lot. I am not around kids-none in family-so I am sure that helps. I may seem paranoid, but hey, I have not had colds. Hope I didn't jinx myself. LOL.
Ginny- I have not skipped any doses, but I haven't felt the need to. I think you are ok, though. You do what you feel is right for you.
Cowgal- I was told to take Ibrance with food. For me, breakfast is the best time. I eat breakfast the same time each day and I have always been a breakfast eater. I just take my meds then because it is easier and fits my schedule. Also, that way I am home and don't have to pack my meds for eating out somewhere. The meds stay in my cabinet at home.
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Cowgal -- As candy-678 mentioned, my wife was also told take Ibrance with food. She takes her's with dinner primarily because it's our most consistent meal -- we eat at pretty much the same time every night.
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The clinical trials looked at ibrance absorption and food intake. What they found was that for most patients, taking it with or without food made no difference, but there is a large enough group that it did make a difference. So, they currently recommend that you take it with food, just to be safe. That might change with the switch to tablets, as someone mentioned above.
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I take the capsules after dinner. The tablets don’t need to be taken with food.
https://www.ibrance.com/tablets
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Thank you all for your responses! I will probably take at breakfast when the pills arrive as it is the most consistent time for me to take them.
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Ciaci thank you for sharing that information. I had a sense from your earlier posts that we had some similarities in our trajectories. I was hospitalized at Mt. Sinai, which is just a few blocks from our apartment, in late 2016. I had no primary breast tumor so it took quite a bit of time for them to determine why I had become so ill. The lesion they eventually found on my spine ultimately tested as MBC and I was super fortunate to end up at the Dubin Breast Center, which is part of the hospital. They are amazing totally state of the art. My early scans showed a fair bit of bone damage beyond the one definite lesion and some uptake but it wasn't clear if that was metastasis that was already healing or just arthritis. The de novo experience is weird enough but not having a primary made super difficult to track my progress. I've been NEAD for about two years also. It's always helpful to hear other stories. Also, I get the sense you are very upbeat and like that!
Hugs,
Penny
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I take Ibrance after dinner sometimes around 8 pm. I always wonder if it’s too late and the meds would stay in the body overnight while I am not taking much fluid. I wonder if this would be an issue as they recommend drinking a least 8 cups of water during the day. I worry that the meds would damage other organs by not being fleshed out.
I tried switching to taking the meds during the day, but can’t always remember or be consistent. Whereas at night, I am more likely to be home.
It’s been over 2 years, still not sure if I am doing this right. lol
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ER visit went well. I was admitted to the hospital and discharged today. The doctor gave me some hydromorphone via IV, and that helped with pain in the throat and ear. I was able to start swallowing and eating some few hours after. They checked my throat and ear and did not see narrowing or anything to cause the pain. The ER doctor thinks the pain might be from cancer cells in the base of skull. I'm just happy I'm able to swallow now. Looking forward to brighter and happier days ahead with no ER visits or pain with swallowing.
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