Ibrance (Palbociclib)
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Well said PatgM
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Karen, I was blessed to help start a full-time support center in Memphis that offered a bevy of complementary therapies. Flying Colors lasted for almost twenty years and I'd give anything to have it back. Unfortunately, it's a super expensive, labor intensive undertaking. I hope all here take advantage of these activities where they're available.
Love from PatGMc Z
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Jaycee - you have an amazing memory. Yes - My MO is giving me Ibrance (with Faslodex) even though it is not approved for Her2+ patients. His rationale is that they likely removed the her2+ patients to fast track the testing by eliminating that additional variable Even still, we have no reason to believe that it won't work for all ER+ patients (and perhaps now even ER-) regardless of the Her2 status. The really cool thing is how he got it approved through my insurance. He suspected I would come back as her2+ when I was dx since I was the first time but that test takes longer. So he ordered the Ibrance when my hormone pathology was back but BEFORE the her2 pathology was in my record. He even called the lab and asked them to hold the her2 results until my Ibrance was approved. I love MOs who know what to do to treat our disease, but also know how to game the system.
Welcome to the newbies! Sorry you are here but in our situation, there is really no better place to be. :-)
Love to all,
Lauren
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Another bit of advice for our new Dancers: Be sure to apply for Co-Pay Assistance. Just google it for MBC.
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Just wanted to make a comment about finding the joy in life... I have done so much more than I ever thought I could, after being diagnosed with MBC. I was Stage 4 de novo, and at first resigned myself to a limited life of sitting on the sidelines and dealing with side effects. How amazingly fortunate to find out that I was a candidate for Ibrance! It changed my life. I've done things in the past 22 months that I never would have imagined - from ATV riding in the Vegas desert, to skydiving simulation onboard a cruise ship! I went to Nova Scotia to photograph ancestor's graves in an old family cemetery, and just last month, my husband and I bought a house in Fort Myers FL so we could become snowbirds every winter (I'm in New Jersey now). I have no plans to leave this life any sooner than I absolutely have to, and I plan to enjoy every minute of it now!
Have had Zarovka on my mind a lot, obviously, and I keep circling around to the advice she gave me when I started this "dance" - basically, to live my life as if I didn't have cancer at all. When something new came up, I've dealt with it, then moved on. Cancer doesn't define me, any more than my blue eyes or cholesterol level do.
"Once your treatment plan is in order, and executing, denial is very healthy state of mind." -Z
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welcome to the newbies!! I am also sorry you are here but there are soooo many incredible, smart, supportive people on this thread. Welcome to always exciting Ibrance dance! 💃🏿
PatgMc I am always inspired by your posts and appreciate it so very much when you always bring me down off a cliff with your reminders about how we can go on and on and possibly reach remission status!! I dream that for us all!!
My current Ibrance dance is, as I believe, showing me that I am getting diarrhea from the Ibrance now...I was having tummy issues a few weeks ago, so I went off the Ibrance for 1.5 weeks and then my tummy calmed down. I started back up on a new cycle (cycle 23?)last night and low and behold: DIARRHEA today!! Nooooooo!!
Anyone have any recommendations? I see my MO tomorrow and will discuss with them. Maybe lowering from 100mg to 75mg?
It’s not the worst thing in the world but definitely would love it to not be the case.
Thank you and love to all!
Brenda
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Good afternoon all
Checking in from ibrance land. Today is zometa and faslodex.
Welcome to the newcomers. I hope you all have long success and mild SE’s on your treatment train.
Love from Philly I reduced to 75 two months ago and I still feel fatigued maybe it’s less hard to tell. I hope the diarrhea is just for this cycle. Sometimes the SEs vary from month to month.
Newcomers as you adjust try to do everything that you like and are able to do. The scope of your treatment se’s Vary but should stabilize and then you can forge ahead with your plans.
Read but don’t post all the time. I’m so happy we have this knowledge sharing andsupport.
Tanya
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Hi everyone, I started ibrance 100mg 2 weeks ago, blood work yesterday showed low WBC, liver & kidney function is normal, MO told me to stop for now & will do blood work again next week. Is it normal? What to expect when see MO next week? Thanks
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42young- When I first started Ibrance (15 cycles ago) I think the low counts freaked out my MO (and me). I am in a small community and not many of us MBC'ers. We stopped, started, lowered dose, and experimented with dosing schedule. Now my MO just goes with the flow of the low counts. We watch the labs monthly and discuss watching for signs of possible infections, but I am on 75mg dosed as directed on 21 days off 7 days. Stick with the Ibrance. Take it seriously but don't let your MO take you off of it altogether. Watch the labs and maybe lower the dose to 75mg from 100mg. Keep us informed.
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PatGmc, i'm already at 100mg. I may need to go down to 75mg? Wonder if 75mg will do anything for me. I'm very small, 89lb.
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Complementary therapies all the way for me... won’t stop the cancer but makes me feel SO much better! Ibrance dosages are very individual it seems...there’s a surprise in our world! My MO says as long as it’s working - I’m NED just now luckily - we’ll deal with the crappy bloods and the schedule. I’m currently on a 3 week on and 2 week off schedule as bloods very low at 0.6. Last day of a cycle tomorrow... we’ll see how bloods are next Wed
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Love from Philly & anyone else with diarrhea. I've had a problem with diarrhea off and on since I started Ibrance a year ago. For a few months it was severe and I lost too much weight. My MO recommended for me to take about a tablespoon of Metamucil in the evening before bed. This sounds odd but it works. Try not to drink water an hour before and an hour after taking it. You want to put the tablespoon in a cup. Mix a tiny bit of water in it. It should be like a thick applesauce. Taking it this way bulks up your stool. You can experiment with how much you take. You can also take it in the morning in addition to the evening. I was able to gain the weight back that I lost and felt much better. I still have diarrhea at times but it is much more in control. I've shared this trick with a few others at my cancer center and it helped them. I hope it helps! ~Kar
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Yes, 42young. I didn't read your post carefully. I'd go with 75mg rather than continue to shorten the treatment time.
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42young - please don't give it a second thought, if the Ibrance is going to work for you, the 75 mg will work as well as the 100 mg. I have been on the 3 weeks on and 1 week off schedule since the start. White blood cell counts have never gone back to the normal range, but they stay high enough to keep me on the 75 mg capsules. Did blood work every two weeks in the beginning, now get blood work faithfully every 4 weeks. Talk with your Doctor, but give Ibrance a chance. Keep you weight up and stay away from friends and family who mean well, but just can't seem to stay away when they have a virus or cold. The drug can definitely work and sometimes can even surprise your Doctor. Give yourself a little time to get into the rhythm. The drug is also now part of the clinical trial - "PACE" - and once the Ibrance and Letrozole combo stops working for me - my Doctor already has me lined up to jump right into the "PACE" trial.
Tanya - I am sorry to here you are still fatigued on the 75 mg. Maybe your body is still in transition. Hang in there !!
Every day is another day - and let's see what gets presented this year in Chicago between May 31st and June 4th at the annual ASCO conference !!
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So I was all excited to start to get my Herceptin and Faslodex at my local community cancer center 1 mile from my house rather than going to the main cancer center downtown. Today I went for Herceptin there for the first time. I always get blood work (for Ibrance) when I get Herceptin. The process at the local place is nothing like the Main center. It took as long today as it does to go downtown, including the 40 min drive each way and usually longer on the way home due to traffic. Everything took forever. 4 sticks to get a vein (I don't have a port) at which point, I asked about blood work - which is normally done as soon as they hook up the IV using the same line. The nurse looked in my chart and sent me off to "blood lab" down the hall? I was so confused. They did a whole new stick to take the blood work. I asked why they wouldn't just use the line for my IV to get blood and she looked at me like I had 8 heads. She said they don't do that because the they can blow the vein with the blood suction. I said this is the way it is ALWAYS done at the main cancer center. She said that was "very strange." Meanwhile this is a satellite of the main center... not some other medical group.
I love the idea of having a back up oncologist at the local place for the 2nd opinion every 3 months, but this place is nothing like the highly professional, well-run machine that I'm used to. I'm going to have to organize some sort of cross training program between the main and local centers.
Just venting. Hope you all having a good day!
Love to all,
Lauren
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Lauren, sometimes we learn that we were made for "such a time as this". You may be about to change everything at this local center by pushing for a training session! There's no reason a clinic should do anything other than the easiest and most comfortable procedures on their patients, right?
Good luck with your new mission, friend!
Love from PatGMc
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Thanks Pat - I’m on it!
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You go Lauren..That local center needs a course on communication skills...esp the listening part! Sounds like they are trying to compete with the main center..Wishing you and others who go there a solution..STAT😄
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Thanks for all your comments. Just found out my MO is leaving & today is his last day. May be that's why he told me to stop Ibrance without telling me how low my WBC was. I will talk to the oncology nurse tomorrow for more details & see if should lower to 75mg or not?
Question - how low was your WBC when you considered lower ibrance doses? I feel a little fatigue, but not sick or having fever or anything. I still work full time. Just don't want to give up on 100mg too soon. Please advice. Thank you so much
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Hi everyone,
In case you were wondering: I just wanted to let you know that I am still here and on I/L. My latest staging confirmed that my primary tumour is still completely gone, my nodes are also clear, and all spine mets are stable with sclerotic rims. My CA15-3 has decreased to 37, which is just within the normal range according to my MO. And my CEA is currently at 1.7, so completely within the normal range.
I lost count on my current Ibrance cycle, I think it is about cycle 19 (started 9/15/2017). I am not really able to keep track with the thread, because life is keeping me very busy (job, kids aged 6 and 8). I hope for many more I/L cycles to come, since besides being exhausted now and then, I am leading a close to normal life right now ... knock on wood.
Best regards,
NettaGER
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NettaGER, so happy to read of all your good news and that you are still here. Celebrating the positives with you!
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great to hear NettaGER
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As am I, Nettager...super news!
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Great news Nettager...wishing you lots of energy....42young sorry your here but welcome.
Lauren...I had a lot of problems with them trying to find a vein....one time they called the "vein whisper" in to find it. Some kind of vein locator machine. Finally was able to find a nurse that got it every time. I had to go to another floor from where I was scheduled but she did it. Some times we get a little timid about asking or suggesting but we are the patient. Good luck.0 -
Yeah for Neggager!!! Good to hear from you. Drop by when you have a free moment.
42young--- I was 120 pounds when started Ibrance. My lowest ANC was 400 (on day 15 of cycle when the med will cause the ANC to be at its lowest) when the MO (my previous MO--he moved away) freaked out about the lab. I was on the 125mg dose. I am now 147 pounds (yeah for lowering estrogen and adding on the pounds) and on 75mg. We do monthly blood work now- right before the next cycle is due to begin. Now ANC is around 900-1000. But I don't know the number for when it is at its lowest on day 15 now---would be lower than 900. Also about your comment about not having a fever. My MO told me just the other day that if our counts are low we may not present with a fever---I was having chills but no fever.
SouthJersey---You mentioned a trial -PACE. What is that?? I have mentioned to my MO my concern about next plan when the I/L quits working and she didn't say anything about PACE.
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Great to hear from you, NettaGER!! Make some big summer plans with your kids, what a great age!!
SouthJersey- That is exciting to hear your plans to join the PACE trial!! And congrats on making four years on I-F (and still going strong?!!!) Some of us have been trying to get INFO about how that particular trial is going, and its super-annoying how they went radio-silent and stopped giving any updates. Is your doctor connected to the trial, and have you heard whether it is successful overall? Like you, I'm pumped to comb through the ASCO abstracts, which should be online in about a month. Hopefully they have some clues as to which direction we should start swimming.
42young, Remember that another option other than dropping doseage is to change the schedule, I went back and forth and finally settled on the five days on, two days off (rather than a full week off) and feel much better (more energy) on the 125 dose..
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Cure-ious and others---
For those on the pulse of the latest information, was there a Conference in Texas recently? And how can we get info on that and the upcoming ASCO information? I don't know how to find out about these Conferences and what is discussed.
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For those interested, the PACE trial seems to have been designed for second- or third-line therapy, and requires that you got at least a six months positive response to Ibrance-femara in the first-line and are within a year of progression. It's a phase II trial offering a Ibrance-Faslodex-Avelumab combo (Avelumab is an anti-PDL1 immunotherapy drug). The premise comes from studies in mice showing that in addition to its anti-cancer activity, Ibrance also affects immune cells in a way that may make metastatic breast cancer respond to immunotherapy drugs. One limitation of this trial is that it excludes people who have been previously treated with Faslodex; another limitation is that its mostly in Boston and midwest locations, not widely available as yet). But, put another way, here is your chance to travel a bit while you take a trial!
Here is the link:
https://clinicaltrials.gov/ct2/show/NCT03147287
PS Another good point- unlike many other trials, the PACE trial allows for bone-only patients; many trials require "measurable disease", like liver or lung mets, so they can compare whether the drug is shrinking the mets versus remain stable..
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Thanks Cure-ious!!!! Second line-check. At least six months positive response to Ibrance-femara- check. Within a year of progression- not progressed yet, but when happens- check. Not previously on Fsalodex- check. Midwest location- Illinois, check. Hey, will let my MO know this.
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