Ibrance (Palbociclib)
Comments
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KBL- Yeah neutrophils of 0.53 are really low. I am still on the 5/2 schedule. We had been doing CBC every 2 weeks. Now switching to monthly. 2 weeks into the new dosing my ANC was 900 (0.9) (mid cycle). Then next time (end of cycle/beginning of next cycle) was 1300 (1.3). Next time (mid cycle again) was 900 (0.9). I am doing another blood test tomorrow-- Wednesday. I will let you know the results. Since I am doing good, we will test at the end of cycle/beginning of next cycle only. My doc is happy with anything over 900.
You said you finished your last pill and your number was .53. Did you wait the 7 days off for recoup? That is what the 7 days off are for-- to recoup the numbers. I always did my blood test the day before starting the next cycle. You should check that number. Then make a decision on changing to Verzenio.
RK2020--- That 5/2 schedule trial is being done at my new cancer center---Washington University. My new MO said the trial is done and will be published in Dec at the San Antonio Breast Conference. She said she could not give out any info early, though.
Spookiesmom- Zofran is the go-to for most docs, but there are other anti-nausea drugs. Can you message your MO about something else to try so you can continue using the Ibrance? Sorry, but I never have had much nausea with Ibrance--- mild sometimes that comes and goes.
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Spookiesmom,
I’ve found some constipation relief by eating more dried fruit...it has helped!
One lady here recommended soaking prunes overnight and then blending and drinking the liquid in the morning.
Hope you find something for the nausea...that is miserable
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KBL, insurance companies must provide case manager/ nurse navigator for MBC s. Case manager’s job is to follow up on authorization and to make sure referrals get approved in time. I hope you get your medication before Thursday. to avoid future stress, You can request this resource and let insurance deals with clinic/ pharmacy drama. they know each other’s language!!!!! This happened to me when my MO (hopefully soon to be former- amen) changed the order last minute, the specialty pharmacy did not get it I am stage 4 and I should start my cycle same day, they said I had to wait 10 working days, the MO nurse also didn’t care. so I asked urgent help from the case manager at insurance, I got my ibrance with 1 day delay which is better than 10 days.
Candy, I am happy for you that 5/2 method works well. Still I believe that 5/2 as a suggestion should pin tothe introduction of this thread. Did you see your MO recently, any update on the MRI follow up visit?
At first I thought cancer itself causes stress. Soon I understood that we manage MBC and do normal life (some levels), we keep our relationship with relatives, friends and network despite some times they don’t respond well to our feelings. We deal with SE s, pain, scanxiety, unpredictable future and and and, because we have each other here although we don’t know each other in person .... but dealing with some kind of health care providers who generously add extra stress to our lives is different story.... long story short the MO made medical error ( god knows how many mistakes until today) now threatening me to discharge from the clinic. apparently the MO and his nurse snooping in my social media to find anything that they can use against me Oh I have not used social media for years. thank god my former colleague/ mentor was with me in the meeting otherwise no one would believe that! I am beyond stressed, lost appetite and insomnia since. a bit of your support would be great 🙏🙏🙏
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I-beat-it,
Wow, you shouldn't have to deal with that. Are there other breast cancer clinics that you could switch to? That is some BS for sure.
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I-beat-it--- So your MO and MO nurse looked on your social media to get dirt to use against you professionally? Oh my gosh. Social media can be problematic. I do not vent about my MO woes on social media. I have posted on here about my previous MO and our disagreement about my care and my changing to a new MO. So, I guess, technically they could find me here and read my posts, but I doubt they will. You need to change MO's if at all possible. Time to start fresh with a new doc and nurse and keep things professional. You said doc made medical error, what happened? Did it harm you? Did you report it?
I did post on the Liver Met Thread about my MRI results. But here is a recap---- I had the MRI on a Saturday. MO nurse messaged me the Monday after. MRI saw 4 lesions. 3 of the 4 are 6-7mm and the 4th was 1.2cm. But not considered progression yet. I only knew of the 1 met (the 1.2 cm one). Last CT mentioned a possible new 2nd one. So I asked how that could not be progression. Nurse explained that MRI's are more specific and so we cannot know if the 4 were there and not seen by CT or if they are new. So... we are doing another MRI in Dec and compare the MRI's. If increase in number of lesions or size of the lesions, then progression. So continuing same treatment for now.
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Candy,
Here's another thing that could have happened with your earlier scans. As you know, yesterday I had an ablation of another liver lesion. It was the same size as yours (1.2 cm). My interventional radiologist, when discussing this with me, said that it might have been there all along and just not seen (I have had MRIs and CTs.) Interestingly, when they got me in the procedure room yesterday, they did have a hard time finding the darn thing under sonogram (even with the MRI films on another computer) because the doc said that it was "hiding" under some ribs. He also told me after the procedure that from time to time when they were doing the biopsy and the ablation, the lesion vanished from view due to the fact that I was sedated, and my diaphragm and other things were blocking it. I didn't get into detail with him about that, but it makes sense to me. I thought it was very interesting.
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BevJen- All of this is so confusing to me. I have had CT's every 3 months for 3 years. Always spoke of 1 met. Now see 4 on MRI. And they could have been there for who knows how long, even the whole time. So how do you know when you really have progression? Seems so haphazard. 1, or 4, or who really knows.
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Candy,
On one of these threads (don't think it was this one) Cure-ious was talking about how they loosely define progression as a 20% increase in mets. I think that's really a rough number, but there was an article about it that I posted that sort of explained it. But that's clinical progression measurement within a trial. I don't really know how they "measure" it in real life, outside of a clinical trial.
And, as folks have discussed before on various threads, different eyes "read" scans differently. For me, if I can, I have my scans done at the mother ship for my cancer center, bc I know that there, it's a teaching center, and there are always TWO people reading them -- a fellow and a supervising radiologist. It sounds ridiculous to have to think that way, but I do feel much more certain of results when I do it.
And the other piece of it is that different types of scans see different things with varying levels of specificity and size. So I can definitely see how things could be seen differently, for example, on an MRI versus a CT versus a PET. I think we just have to live with the uncertainty, and question everything that we are not comfortable with. Sad but true. This is evidenced by the fact that radiologists always state which prior scans they are looking at -- and, lo and behold, they tend to adopt some of the language from that prior scan. Despite their extensive training, they are only human too.
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Candy, thank you for letting me know your numbers so far. I’m so glad it seems better.
I always do my blood draw on the day I’m supposed to start my next cycle, but this time I am going out of town and won’t be here on that day. I had to hold back a week last cycle, otherwise yesterday would have been when I would have started. I had just finished my last pill Sunday and knew it would probably be extra low. She told me I could start again next week because we won’t be able to test it. I will talk to her again about Verzenio but probably won’t make a decision until my next blood draw, which will be five weeks so we can get back on track of blood draw after the seven days off. It was just because I won’t be here. It would have worked out perfect had I not had to hold a week last month.
I-beat-it, I’m so sorry about what you’re going through with your MO. I hope you can find a new one who will treat you better.
I called the pharmacy, and the medication is packed and ready to be delivered to me by tomorrow. Finally got someone at my insurance who figured out the problem and got a rush on delivery. I do have an advocate that calls me monthly. I will tell her what happened and ask her if I should call her if it happens again. We should not have to deal with that part of it.
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KBL- Yeah sometimes things collide with our schedules. I too think you should check again next month when you can get blood drawn day before starting next cycle before making decision about Verzenio. Then, will insurance let you move to another CDK? I have wondered about that. If MO documents issue with neutropenia will that allow change in CDK and insurance agree.
Woohoo that you will be getting your med delivery on time!!!
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I beat it sorry that you're fighting with the MO. I don't like the fact that they were stalking you on social media. Yuk. You're absolutely right about the stress thrown our way as we live through this and try not to make other people feel bad etc. Deep sigh. I hope you feel supported.
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Thank you, Candy. With the mix-up I had this time, I’m almost afraid to ask about switching. I’d really like to stay on Ibrance. I know the side effects, and they’re manageable. I just hate having to hold. I did so well fortwo cycles and then it tanked again. I want to know what I did different. Lol. I will keep you posted.
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My WBC's take a long time to rebound, even on the 75 ml dose. I usually take two weeks off.
Spookiesmom: when I have some nausea, I sip cold pickle juice (the kind with garlic and dill floating in it - they have anti-cancer properties). It's high in sodium, so it's not for everyone, but it does give some relief without side effects.
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you ladies are wonderful thank you so much for your support, Tanya yes I do feel supported and I like your post, thanks a lot and hugs
Candy, first I am happy for you that you are in good hand, I pray for you for good results in your next mri. Please don’t worry about your posts. these people made mistakes big time that is why they acted immature snooping around. My network suggested taking legal action but I don’t waste my time and energy on them instead keep my energy for doing something useful (I am at the beginning of week 3, so the level of energy is minus zero!), for now changing the MO is the plan and searching to see if the insurance will allow me to move to another clinic.
I am sorry if my post was irrelevant to main concept, I thought I would ask help my expert virtual people.
I wish everyone the best.0 -
KBL - blood draws and travel . Twice now I have gone to an "urgent care" type place for blood draws while in travel/play status. Travel was known well known in advance, so my DR gave me a hardcopy order for blood draw. Nurse said patients do this all the time, and the clinic sends results to DR.
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BGRS - I was just thinking about this earlier today, as I would like to come home for a few longer trips next year. I can get pills for that long, but what about the blood testing. I dont know how that would work overseas necessarily, but can you just pay cash at the urgent care for a CBC or whatever? Any idea on cost? It looks like sub $100?
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Hi, BlueGirlRedState. I have a house further north from me as well where I have gone to Quest and gotten a blood draw when it was due, but where I’m going is a brand-new area for me in a very rural part of Georgia. I am finally spending a week with my husband, daughter, her husband, and my grandson. Having to go for a blood draw was the last thing I wanted to do. My cancer is going to be on the back burner this week. I don’t want to talk about it, think about it, or go anywhere and see anybody about it. Lol. The only time I will have to think about it will be when my alarm goes off to take my medication daily. Thank you for thinking of me, though. I totally get where you’re coming from. It would have been easier to make sure to get it done at the right time.
I did get my medication after a horrendous battle with the different companies, so that was a lot of stress off my plate.
I probably will try to stay off the forum for the week since I don’t want to think about it. We shall see if I can actually take that break.
Leaving soon, and I can’t wait.
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KBL...have a wonderful time with your family. Relax and enjoy!
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KBL- Enjoy the time away! I am glad you were able to sort everything out with the specialty pharmacy. Getting away and not thinking, talking or having to see anything cancer related for awhile really helps with recharging the batteries. Been kinda doing that a bit more myself these days, well, I've been finding Im needing to do it more these days. Enjoy, Enjoy, Enjoy a break!
Jackie, I didn't want people to worry so I thought it might be a good idea for me to check in. Especially with the loss of Penny and knowing how i feel if I don't see a name pop up for awhile. Even if I feel like emotional poo, I still wanted everyone to know I was around and "ok".
Spookiesmom - for nausea I drink flat ginger ale. Zofran works for me, but I find it really makes constipation bad for me. So Ginger ale or even Ginger losenges seem to help. Queasy Pops sells these losenges for chemo patients. I got a free sample of them while on IV chemo, tasted good and they worked, found some in Walmart that worked well too, cant remember the brand.
For constipation issues, I found strong decaf coffee with truvia sweetner and my carmel macchiato coffee creamer sees to really do the trick. Or I'll eat an anjou pear. I heard sugar free candy can start the train again. Some swear by Russell Stover sugar free peanut butter cups. Not sure Russell knew their chocolate could pull double duty. But apparently it can.
MO visit on the 5th. Had Zometa last MO vist. Due again in January. Will be starting Cycle 12 next week. 2nd cycle at 100mg. These days I feel like the day after a Zometa infusion. Beat up and sore. But still treking along, even without the pep I wish I had. I feel ancient and I shouldn't. I'm not even 40 yet. TMs dropped last cycle. Dunno why. I'm wondering if TMs are just not accurate for me. Maybe just have to wait and see. My TMS were normal when my mets were found throughout my skeleton.
I can't believe its been a year on Ibrance, it feels like not too long ago I just started. I will say the mouth sores are MUCH better at 100mg and I am thankful for it.
Shoutouts to Aprilgirl, Sondra, Candy, RK, Ciaci, Jaycee, BevJen, Bluegirl.
Take care ladies!!
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Rabbit!!!!
So good to hear from you, and yes, we do worry when we don't see people here. Although, like you, I'm feeling the need to pull back some bc I tend to focus on my BC way too much and it can get very heavy, as I know you know.
Grateful that you're still trucking along here, even if you don't have pep in your step. I am finding Ibrance to be doing a number on me as well, but this month, I'll only be taking it for about 10 days bc I had a liver ablation/biopsy on Monday. I figure that my body needs a break anyway, so I'm going to go with it.
Take care of yourself!
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Rabbit - Mmmmmmwa! 😘
I too have pulled back a bit. Every 2-3 days I try to get caught up only because I want to follow how you all are doing. I'm in sunny Naples now and trying to forget. I live in a small community of 289 lots. About 5 lots are occupied year round. The rest of us dribble in slowly between October and the end of the year. It's not even Halloween and I'm already a bit tired of hearing how good I look. Ugh.
Here's a non cancer story for your entertainment. Two days ago my husband and I were at the bottom of our drive painting a protectant on a new patio umbrella. A neighbor (an older gentleman) RUNS by our lot with his dog yelling “watch out for the bees - I've got 3 bites". I looked at my husband and said I think our neighbor has lost his mind. And then we were instantly swarmed by BEES. I'm allergic to bug stings so I ran inside to get my EpiPen. My husband dropped his bucket of sealer and tried to outrun them. I got stung once on the tip of my nose. My husband got stung 5 times. We found two stingers in my dog. I never know how severe my allergic reaction is going to be. By the time my husband got inside with the dog, I had already taken Benedryl and was ready with the Epi if my throat started to swell. Fortunately, the swelling was not life threatening but man did I look bad. My face swelled up like a puffer fish. It's now been two days and the swelling is almost gone. Sooooo, apparently the palm tree trimmers unknowingly disturbed an aggressive African bee hive. I've never seen bees so aggressive. It was like a scene out of a movie. Once I was inside I watched the landscapers running down the street trying to escape the bees. One poor guy was stung so many times he was throwing up. I'll try to post a picture of the hive before it was sprayed.
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Hi all.
Rabbit- Good to hear from you. Thanks for the shout out.
KBL- Enjoy your vacation.
I understand wanting to get away from the cancer and the boards for a while, I don't blame anyone for taking a break. I personally cannot do it though. I want to see how you all are doing. You feel like family, or at least besties. No one understands like you all on here. I have been isolated in my home due to Covid. And now with cold weather coming with all the regular illnesses PLUS Covid, I am staying in. Not too much to keep me occupied. And the cancer is what it is. It is a permanent part of me now. I do call church friends during the week, and been Zoom gaming with 3 other people once a week. I like to read. But.... I always find myself back here. Reading all your posts.
Hugs to all.
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Thank you all. I’m on the road, so I decided to check one more time. It is hard to stay off, but I will be busy most of the time once we get there.
Rk2020, So sorry for the bee stings. Ouch.
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KBL - have a fantastic time on your vacation!
RRabbit - good to hear from you! I appreciate you popping in to say hi because I think we all worry when we don't hear from people on here. Hang in there and I hope as you continue on 100mg Ibrance you get the "pep in your step' back.
BevJen - keep us posted on your liver ablation /biopsy. I agree, a little break from Ibrance might be nice!
RK2020 - wow, African bee hive and stings, that would be scary! So relieved you had an epipen at the ready and weren't seriously impacted!
Candy, I hear you! I did take a break when we took our road trip to Yellowstone and some national parks - which we scheduled between Ibrance blood tests and Fulvestrant injections...I do like to check in on bc.org because I truly feel less alone and less afraid in this with you all.
My friends and family in "real life" who are aware of my recurrence just don't really get it . I can't expect them to truly get it, but you all do and I appreciate all of you.
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Miss Rabbit...I totally understand about needing a break now and then. Glad you continue to check in.
There are days I am here reading and laugh at some stories, cry at others and happy for the good reports, but don't always comment because I don't always have it in me. But just know that you are all always in my thoughts and prayers.
Cancer is a constant on my mind as I'm sure it is for all of you. It is exhausting. Just today I was looking back at old records and noticed that my ER/PR status went from ER+/PR+ in 2009 to ER+/PR- in 2018. I'm sure I was told this when I learned I was metastatic but that was a devastating time so I'm sure I didn't take note. Now of course I am researching if the change in status has a worse mortality rate.
I'm also finding that my side effects on the tablets seem worse than on the capsules. More overall fatigue and body aches seem to be the issue now.
Have a nice weekend everyone.
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Hi JACK5IE,
I'm new to breastcancer.org, only joined in June of this year after finding out I had breast cancer with mets to bones. I also was diagnosed in 2009 w/ER+/PR+/HER2- tumor markers. However, when they biopsied my right 12 rib, the results came back ER+/PR-. At first my MO put me on Ibrance & letrozole; however, my CA 27-29 markers continued to rise, last result on 08/25/20 was 313. At that time, I was sent for another PET, which showed progression of disease in my C-spine, T-spine, L-spine, iliac bones, and sacrum (originally met diagnosis was right 12th rib and T10). Anyway, the next day, the letrozole was switched to Faslodex, so now I'm on Ibrance and Faslodex now. After starting the Falsodex, I noticed mild nausea, for which Saltines & peppermint candy seem to work and episodes of extreme tiredness (no body aches). Also, I think the Faslodex is causing constipation too! Was thinking about starting Colace, but maybe something more natural would be better. Of note, the only side effect I had on the Ibrance & letrozole (3 cycles) was very mild tiredness.
Anyway, getting back to the ER+/PR- status, I believe Ibrance, letrozole, and Falsodex are only dependent on ER positivity from what I read and what my MO has discussed with me. I'm hoping the Falsodex works, because the next med my MO wants to use is Affinitor and from what I read the sides effects are numerous.
Please let me know if your research turns up anything different.
Thanks,
Katrose
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To all my Ibrance sisters:
I hope you are having a wonderful day!
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To all my a Ibrance sisters -I hope you are having a wonderful, worry free day
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RK2020: Thanks for the post. I can close my eyes and image I'm at the beach. It has snowed here over a foot and keeps on coming down. We are "hunkered" down until at least mid week when it should warm up (just over freezing). I have a doctor's appointment on Wednesday so I am hopeful it will melt/clear out by then. We cannot put studded snow tires on until November 1. The neighbor has a new homemade sled to pull behind his truck and smooth out the road. We are 3/4 of a mile from pavement. Sound rural - well it is. Nearest loaf of bread is 100 miles round trip. We love it here.
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Geez You get snow, northern Gulf Coast May have ANOTHER HURRICANE by next weekend. I’ll get rain from it.
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