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Comments

  • lakelandgirl
    lakelandgirl Member Posts: 2
    edited June 2022

    Ha!! Great photo! Yes I’ve been THAT hungry for pizza..

  • aprilgirl1
    aprilgirl1 Member Posts: 800
    edited June 2022

    Thanks to all of you for the pocket duty ! It helps so much to know I have people cheering me on, regardless of outcome - with snacks ! Love that pizza photo Rk2020:)

    Scan (pet and CT) results are in and all unremarkable ! Reflux in my esophagus showed up again but otherwise it's all clear and they aren't concerned about the reflux as far as breast cancer is concerned. I'll see my new/temp oncologist on Monday 6/27 for faslodex , blood work and an exam .

    Sunshine99- sounds like you had a good appt! Onward to cycle 27 for you, which is great ! Cycle 32 or 33 for me start next week assuming my neutrophils are ok. Onward :)

    I'm here for pocket duty for anyone who needs it! Snacks....chips and salsa and corona lights with a slice of lime (gee....I can't believe I have reflux ....!)

  • dancemom
    dancemom Member Posts: 407
    edited June 2022

    I LOVE that Pizza shot 🤣

    Restarted Ibrance 4 weeks ago post surgery and radiation. (Cycle 7 or 8? I had to hold so many times for low neutrophils and treatments, im not sure. I started it April 2021) Saw MO and NP yesterday. ANC below 900 again🤨, so I am on hold one more week. Since I'm already on only 75mg, I am now going on a 25 day cycle. 18 on, 7 off. I hope I can keep my Calendar straight! I decided to not bring up that study. I am lucky to see my team in a big teaching hospital, where I know I have been the center of many interdisciplinary conferences (RO told me 40 were in last one!), so I figure they have access to a lot more nuanced info than I do. Scans at some point, not clear when but insurance won't do PET and I have TE so no MRIs until after exchange. (Nov is the plan)

    Good news Aprilgirl and sunshine99

    Sorry if I double posted. Also, sorry its hard for me to remember who said things on previous pages.


  • ciaci
    ciaci Member Posts: 315
    edited June 2022

    I'm also in the "If it ain't broke, don't fix it" camp (that was one of my dad's favorite sayings). Next month will be five years on Ibrance/Letrozole for me, starting Cycle 65 next week. I've been NEAD since my first follow-up scan, 4-1/2 years ago. I will happily stay on Ibrance the rest of my life if it will continue to work for me!!

  • sunshine99
    sunshine99 Member Posts: 2,723
    edited June 2022

    Pizza sounds good! What a great picture, rk2020!

  • rk2020
    rk2020 Member Posts: 697
    edited June 2022

    Aprilgirl - Yahoo! Keep the good news rolling! You too Sunshine and Ciaci! Long live the Ibrance dancers

  • sf-cakes
    sf-cakes Member Posts: 615
    edited June 2022

    I couldn't seem to log on yesterday, wanted to offer a loud WOO-HOO to Aprilgirl for your "unremarkable" scans! And Ciaci, thank you for sharing that your scans are showing NEAD after almost five years! Wonderful! I really needed to hear some good news this morning, thank you soooooo much.

    Love that photo RK, that's really my preferred way of eating pizza.

    Dancemom, that's an interesting Ibrance schedule, I, too, hope you can keep track with a good calendar and that it keeps your ANC level up!

    Hello to everyone else, wishing a peaceful and pizza-filled day ❤️

  • LI77
    LI77 Member Posts: 68
    edited June 2022

    I had the Ibrance study conversation with my MO yesterday. She is also of the mindset that if it’s working, don’t switch. She did say that they can’t get an accurate OS if people in the study are still alive, which is likely the case, and that the progression free period is the more important thing to look at.

    Hope everyone is having a good week. We have good friends coming in today to stay with us for a week and a half, so I’m super excited!

  • tanya_djamila
    tanya_djamila Member Posts: 1,540
    edited June 2022

    li77 I’m happy you have a nice visit to look forward too.

    Congratulations on good scans ciaci aprilgirl and sunshine!!!

    I spoke with my onc about the bc study results and he said he wouldn’t change anything for me bc this ibrance faslodex combination has been working for 5 years. Or according to the study maybe only faslodex has been working and ibrance just providing side effects???? I guess we’ll get the answer to that question soon enough.

    Have a great rest of your weekend.

    Tany

  • weninwi
    weninwi Member Posts: 782
    edited June 2022

    To All,

    I've been away attending to other things, but appreciate the support found here. I asked my MO for a follow-up telemed visit to discuss the Ibrance study and she said "No". So it's been helpful to read about the conservations others have had with their MO regarding the topic. My last ANC was 1050 mg and I was told to continue on 100mg Ibrance. I've been paying more attention to dietary approaches to enhance the immune system and metabolic health - specifically the benefit of intermittent fasting. There are many differing theories and approaches. My next scans are first week of Aug. I'm hoping the "small progression" they saw is now stable.

    Wendy

  • sunshine99
    sunshine99 Member Posts: 2,723
    edited June 2022

    Wendy, I'm glad to see you back. I'll be anxious to hear how your next appointment goes after your August scans.

    Carol

  • malebreastc
    malebreastc Member Posts: 96
    edited July 2022

    I was diagnosed with Bone, Liver and Lung mets, after 6 months of Ibrance +Fulvestrant + Xgeva I am NEAD. My pathological reports have always been normal even during diagnosis.

    Anyone knows if this means the affected organs and bonescan go back to normal function ?

  • sondraf
    sondraf Member Posts: 1,684
    edited July 2022

    Has anyone seen/heard from PatGMc?

  • rk2020
    rk2020 Member Posts: 697
    edited July 2022

    Oh dear. PatGMc hasn't signed on since May. Pat, Pat, wherever you are, please check in! I hope she just got frustrated with the site and is taking a break.

    As a matter of fact, we have so little activity on this site lately, it sure would be nice to have a roll call even if you have moved on from Ibrance. Once a dancer, always a dancer.

    I hope everyone had a thoroughly enjoyable Fourth. ❤️

  • kbl
    kbl Member Posts: 2,975
    edited July 2022

    Hi, everybody. You all know I've been a part of this forum for over two years. In the beginning, I had an opportunity to work with RC Horowitz and complete a survey and have a 60-minute interview with them. They paid me to do the interview, but I felt it helped me more than it helped them. That 60-minute interview felt like I was lifting a weight off my shoulders. I have participated with them since then and have a close relationship with Devi. I've even recommended friends who were taking Verzenio when they needed help with a survey.

    Anyway, they are looking for participation in another survey that I can't do but thought some who could participate would benefit. It's a paid survey, and they're looking for those on Ibrance for less than six months.

    MaleBreastC, do you qualify? I cannot recommend them enough.


    Here is the flier. Please mention me when you write them. Although they've had a stipend for me in the past, they did not offer me one at this time, but I would sincerely do this for free.

    Kris B. (KMB

    RC Horowitz


    Paid Confidential Marketing Research Study

    If you have been diagnosed with metastatic / Stage IV Breast Cancer and have started taking Ibrance within the past 6 months, you may be eligible to participate in a paid

    marketing research study being conducted to help improve education for people living with these Breast Cancer.

    If you qualify and participate you will receive $175 for completing a single 60-minute web assisted telephone interview

    To find out more, please call: Jane Walker or Devi Heyer

    (888) 392-5000 or (212) 401-7902

    RCHorowitz & Company works to help bridge the gap between patients and the healthcare industry.

    The more our clients learn, the better we can make it for others in the future.

    Information gained from our studies is used to provide the healthcare industry invaluable information

    about patient experiences.

    Our studies have helped bring new drugs to the market, improve drug delivery methods, and develop

    patient informational materials like support websites, drug start-up brochures, and patient

    information packets.

    11 Main Street ♦ Chester, New York 10918 ♦ P: (212) 779-3633 ♦ F: 646-519-2470 ♦ www.rchorowitz.com



  • malebreastc
    malebreastc Member Posts: 96
    edited July 2022

    Kbl

    I am on cycle 8 so not sure if I qualify

  • kbl
    kbl Member Posts: 2,975
    edited July 2022

    If it’s been more than six months, I don’t think so. Darn. Thank you for responding.

  • smallmoments
    smallmoments Member Posts: 42
    edited July 2022

    Hi Everyone. I'm a first time contributor but have been reading these posts since I was first diagnosed. It's been a lifeline during the most difficult times and I thank you.

    I've been on Ibrance since December 2020 and this week, a PET scan revealed "very small uptake in liver lesions". I was originally diagnosed de novo with extensive bone mets. My MO is out of the office but sent a message that I'll be scheduled for a Guardant test to check P13K status. Possible next step would be Fulvestrant or Fulvestrant plus Piqray.

    Needless to say, I'm anxious about the progression. I've only been on Ibrance for 18 months and was really hoping to get more time out of my first line. Actually, my CT scan in March noted something too small, probably "benign" in my liver, so that would have been 15 months. That's basically the placebo group progression free time, which really sucks considering the SEs (I believe the Ibrance arm was around 24 months). When I was first diagnosed, I remember my MO saying that she doesn't necessarily change treatments right away even with progression. But from the message, it seems we're gearing up for a treatment change. I'm scheduled to see her soon but wondering if anyone here has a similar experience? Is it possible to radiate these small lesions and continue with Ibrance or another CDK 4/6 inhibitor? I'm feeling that old fear creep back up. I have an 8 year old. I'm thankful for any insight.

  • ddil
    ddil Member Posts: 92
    edited July 2022

    hi KBL

    well I’m back in IBRANCE did not switch to Kisquali. This is the beginning of my six month drop my dosage from 125 to 100 due to low white blood cell counts. I am joining the Serena six clinical study at Mayo starting September I think. At least I’ll be meeting with them in September and getting all my testing done to make sure I qualify. So I may qualify for the survey as I’m starting my six-month period I can give them a call and see their criteria. I hope you are doing well I think of you often

  • kbl
    kbl Member Posts: 2,975
    edited July 2022

    Hi, Debra. Please call. They are so sweet there. They'll let you know if you fit criteria. It really was a wonderful experience when I did a survey. I know Fay has also done one about Verzenio with them. Keep me posted. Sorry you're not going on Kisqali.

    Smallmoments, I'm sorry I can't answer your question, but I can tell you when I was tested for PIK3CA, multiple times there wasn't enough sample for them to test. I finally got the answer after three or four tries. I did not have the gene. I got two years out of Ibrance and am now on Xeloda and Faslodex and doing okay ten months in.

  • sondraf
    sondraf Member Posts: 1,684
    edited July 2022

    Hey smallmoments-

    I too only got about 18 months out of Ibrance before my primary and axillary decided to reignite themselves. At that point I was still bone only so they went for the surgical control, timed perfectly so I would only be off Ibrance for a month (but still on letrozole), with the understanding that if my next scans were stable in bones I would continue. Unfortunately the scans showed one of my vertebrae mets got its grow on so that was the end of the dance for me.

    Now, they did radiate my vertebrae lesion so at this point everything is more or less gone, but I did wonder why I couldn't just stay on Ibrance. But I thought about it some more and Ibrance just wasn't 'my drug'. I had a tough time with low neutrophil counts and was restarted on 75 and finally felt decent for a month before that scan. It did a bit of work on my primary - I got maybe 40% reduction in size and it did nothing on my axillary at all - and that pissed me off considering I see all sorts of reports of women seeing their tumors disappear in like three months. There was also general concern from the MO about 'losing control of the cancer' and they didn't want to keep me on it to only fail spectacularly in three months. I guess I kinda 'semi-failed'. I feel like i have read a study somewhere about how in some women when Ibrance fails it can fail big so best to get ahead of it.

    So, like you, I was irritated that the miracle drug wasn't for me and oh hey, I got to spend about 9 months feeling like hot ass 7 or 10 days out of the month thanks to side effects. Now I wonder if Kisqali may have been better. And this is all in the backdrop of like super ER/PR positive so what, letrozole alone would have worked? Its all very frustrating. Im also de novo, for what its worth.

    Have you been tested for BRCA? I turned up a surprised BRCA1 so Im on the Lynparza train now (with a letrozole chaser) and its a much better ride (well, once I got past the 10 weeks of adjustment). My neutrophils are almost always close to 3 now, tumor markers normal, and I have so much more energy and never feel like I have a cold/flu coming on. Sometimes I feel a little nausea but I found the triggers (cheese/dairy) and keep exercise up to manage my fatigue. Every week gets better, so in a way I am glad Im off Ibrance. I was not offered a Guardant 360 at this point because I guess there was nothing to biopsy, but that would be in my future for sure.

    I guess the point of all this is to not feel down about your response. Piqray could be YOUR drug. Or another option could be the one. Unfortunately they just cant tell yet what will work for what cancer - its targeted to within the ballpark, but not the individual player I suppose.

  • aprilgirl1
    aprilgirl1 Member Posts: 800
    edited July 2022

    Hi all, I have been a bit busy with house guests so haven't been able to post. Hope you are all doing well!

    Smallmoments, great advice from SondraF - Piqray could be THE ONE! We are in such a strange reality.....I feel like I am taking my cancer meds and hoping I am an outlier so I can hang in (survive) for the next big "MBC miracle drug/treatment". I think we are all in this same altered reality. Some days it gets to me!

    I saw my Oncologist on 6/27 (a substitute onc as my oncologist is on medical leave) and this substitute Onc seemed very nice. My scans and blood work were all good, which was great news. On 6/30 I had my sister, her husband and their 9 year old came up for a visit with their dog PLUS my daughter and a friend and her dog so it was a very fun and busy 4th of July week full of laughter, good food, dogs, decent weather and yes, covid! The 9 year old came down with Covid on day 2 - we have a guest suite not attached to the house) so she and her father who already had covid stayed there. She actually wasn't too sick but wasn't able to join in the 4th of July festivities which was too bad. No one else came down with Covid while they were here, they all left in the morning of 7/5. I was back to work on 7/5 and my work partner (we share a 5 ft by 5 ft small office) came down with covid on 7/7 - I have been in our small office with her for 2 full days so it will be a miracle if I don't come down with Covid but we shall see. So far, I feel fine! I did take a test today and it was negative. No one I know has been seriously sick on this Covid Strain but I still would prefer to not get it.

    SondraF - I need to catch up on the UK politics - what is going on?!

    Ddil - Good for you to join that clinical trial! Keep us up to date on how that is going.

    PatMcG - hope you are doing ok, please post when you have a minute!

    SF Cakes - how is everything for you?

    Hope you are all as well as can be. Keep on keeping on!

  • smallmoments
    smallmoments Member Posts: 42
    edited July 2022

    Thank you kbl, sondraf, aprilgirl1 for your responses. My Guardant test is next week so I'll see what shows up.

    sondraf, my neutrophils also tanked but managed to hover around 1.0 so I was able to scrape by. But the fatigue and risk of infection were ever present (I had a mystery case of severe cellulitis last year that brought me to the ER). My MO is away but she just called me to check in (thankfully!). She reassured me that the liver uptake number is very close to what is normally seen on a PET. My tumor markers, liver numbers and function are all great. She did say that the uptake, although very small, may mean a possibility that things are about to become more active so we're staying a step ahead with the Guardant test. I tested negative for BRCA. I'm glad to hear Lynparza is treating you better. Having neutrophils at 3 seem like a distant memory!

    Aprilgirl1, congrats on the good scans. So sorry to hear about the Covid scare (the numbers are up again where we live). I hope you continue to test negative.

    In case this may be of interest to others, my MO mentioned that a new study was just presented at ASCO last month that showed people who progressed on Ibrance did well after going to Kisqali, so that may be an option down the line. I also asked her about androgen receptor based therapies in the pipeline (I'm highly AR+ ER+ and moderately PR+) and she mentioned that there is something related to AR being studied now but the mechanism is based on turning on androgen receptors (as opposed to inhibiting them) and is really being looked at for TNBC (this is her research specialty). I didn't quite understand how this worked and why it's not being studied for ER+. But putting all that aside for now to make a cup of tea and watch a baking show with my kid. Wishing everyone a peaceful weekend.

  • sunshinedaydream
    sunshinedaydream Member Posts: 35
    edited July 2022

    Hi Everyone,

    It's been a while since I've posted but I have been checking in and reading all the posts. I thought I would respond to RK2020's suggestion for a roll call and contribute to this thread, since I get so much from reading everyone's posts. I don't have much to offer from an advice perspective, so I'll give an update on how my Ibrance Dance has been going.

    I hit my 18 month mark from initial diagnosis a couple of days ago and sometimes it freaks me out to think I've hit the half way point for the average survival rate. I try not to think about it too much because when I do it immobilizes me. I try to keep calm and carry on and hope for the best.

    I finished my 15th cycle of Ibrance last Sunday and am feeling good but developed a bumpy rash on my pointer fingers (it’s worse on the left and mostly resolved on the right hand at this point. I was put on a lower dose for that cycle and went from 100 to 75mg due to low ANCs. I've always been right around 0.9 or 1.0 (if lucky) after my week off. I think I was at 0.7 when I was switched from 125 to 100, but that happened almost right away. I think I was on 125 for 2 cycles. The same thing happened with this switch to 75 but I had been on 100 for 12 cycles. I really hope I can stay on Ibrance at this dose for awhile. I switched MOs in March when my previous one left my center. She was ok with her patients taking two weeks off between cycles if needed but my new MO seems to prefer to lower my dose over taking more time off. Seeing as this is the lowest dose for Ibrance, I hope she is open to taking more time off if needed rather than being quick to switch treatment. I had to discontinue Cycle 13 at 17 days and discontinue Cycle 14 at 14 days due to catching colds. I also took 3 weeks off between cycles 14 and 15 to have a wisdom tooth removed. So, perhaps she considered that as already taking extra time off, although, I feel like there were many other factors at play. Having labs on Monday and will be interested to see if they are well above 1.0 or hovering as usual.

    I have extensive mets to bones, various lymph nodes, and liver. The liver and some lymph nodes resolved after my first two follow up scans (6 months in) and everything else has been shrinking and healing (bone Mets). I have my next PET on 8/2 and hope that everything continues to shrink even after all these incomplete cycles and breaks. I am also taking letrozole and didn't take any breaks from that, so hopefully it was carrying the load. I also switched from a monthly Lupron depot to a 3 month depot back in May. I hope it's just as effective. I will say I am enjoying not having to get the shot every month. If I didn’t have to take letrozole every day, I might actually be able toforget for a day or two that I have stage iv cancer.

    @smallmoments, I'm glad your MO called with some reassuring information. I hope you and your medical team find a great solution for you that works for many many years. I have a 6.5 year old daughter and a 4 year old daughter, so I can relate to you on that front. Please feel free to message me if you'd like to chat.

    Wishing everyone a nice weekend.

  • ciaci
    ciaci Member Posts: 315
    edited July 2022

    My 87-year-old mom has recently been diagnosed with Myasthenia Gravis. She had a "crisis" last week (too weak to even lift her head when laying on the couch) and ended up in the hospital for three days. My daughter and I visited her yesterday, and she's doing great. In fact, she was out walking around her townhouse development when we arrived. When my daughter told her she was proud of her for getting back out there, she said, "I figure if I got hit by a bus, I wouldn't be afraid of getting hit again every time I saw a bus, so I'm just going to live my life. If something happens again, I'll deal with it. Until then, I'm not stopping anything I like doing." Then my daughter turned to me and said, "I see where you get it from. You have that positive outlook, too! I hope if I ever face adversity, I can be like that." I told her my grandmother used to say, "Don't worry if it's half full or half empty, just refill the damn glass!" so there's a good chance it will continue into the next generation!!

    Happy thoughts to all!!

  • sunshine99
    sunshine99 Member Posts: 2,723
    edited July 2022

    ciaci, good ones! I especially like, "Just fill the damn glass!" Your mom sounds like an inspiration! Thanks for sharing!

    Carol :)

  • aprilgirl1
    aprilgirl1 Member Posts: 800
    edited July 2022

    Ciaci - just refill the glass, I love that! You and your mom are an inspiration for sure.

    SunshineDaydream - thank you for posting and it sounds like you are doing well! Enjoy your kids. We all understand how you feel as you hit these "milestones" such as 18 months from MBC dx, knowing what that means in OLD MBC data. Remember what Han Solo said...."Never tell me the odds"....However, all of us in this MBC world and Ibrance dance understand you.

    Smallmoments - your Onc. sounds like she has a great plan and I am sure you appreciate her reassurance about the petscan. I was tested for Pik3ca at my stage IV dx but it was negative - when/if i have a recurrence I know my onc. said they would test for it again. Enjoy your 8 year old! That is a sweet age.

    RK2020 roll call! So important!

    Ibrance dancers current and those who have moved on to other meds, check in, we love to hear from you!

  • candy-678
    candy-678 Member Posts: 4,171
    edited July 2022

    Previous Ibrance Dancer here.

    I got 4 years out of Ibrance, before moving on to Lynparza. I am headed to 1 year on Lynparza (Sept). My 5 year mark for MBC is Sept. Next scan is August, so we shall see. I mainly post on Mel's Living Room Thread-- "My Love, My Life..." Thread. But I still read this Thread.

  • spookiesmom
    spookiesmom Member Posts: 8,178
    edited July 2022

    I’m here. June was awful for me. I keep telling MO I’m constantly nauseous. Well, it got. so bad,, I was only eating applesauce and ensure. Lost 5 pounds. Had a bad UTI. Fell 3 times, have HELP button called EMTS at 4 am for first time down.

    MO said to stop ibrance and letrozole for 3 weeks, then restart letrozole see if nausea comes back. Did all that, it’s coming back.

    So I guess I’m off both. Won’t see him for a few weeks. Don’t know what he will do.

    This is scary.

  • rk2020
    rk2020 Member Posts: 697
    edited July 2022

    Ciaci Ciaci Caici thank you for posting that. ❤️ I’m in a bit of a funk off and on for a few days now and needed that. I’m preparing for my son’s week long visit with his girlfriend that we are meeting for the first time. I’m always thrilled to spend time with my son and I’m excited to meet his love but I’ve been draggin’ ass for 3 days now and I need to snap out of this. Today was my last day of xeloda so tomorrow I start a 7 day break. Hopefully, the break will help. 🤞🏻

    Sunshinedaydream - I’m so glad you contributed. Ibrance was tough on my blood too. In your pocket on 8/2!

    Smallmoments - I had bone biopsy material tested in 2020. It didn’t reveal much. No PIK3 mutation. I had a Guardant test done earlier this year when I had significant progression to my bones and it showed up for the first time in my liver. I got zilch out of the test. I hope your results are more enlightening. I was on Ibrance/Fulvestrant for 19 cycles but I had to wring every last bit out of that drug to get that far. My first bone progression was at 11 months and we zapped it with radiation. Then I had some nodes pop up and we decided to wait and see. They were gone by my next scan. Then on the following scan I had multi focal progression in my bones. I was in the midst of a move and was trying to get a second opinion from my MO at Moffitt but change in treatments were delayed first because my records got lost in the mail. When Moffitt finally got my disk, I had a Zoom to go over the results. The day finally came for the Zoom and my MO somehow didn’t order a comparative read. 🤦♀️ Another delay. I got a new oncologist in Florida but all that craziness cost me a month. So theoretically I progressed enough to move treatment in 18 months but I kept taking it for 19 months. Ibrance was my security blanket and I was bummed to start a new med. Because of my move and switch of MOs in Florida, I actually got 3 opinions. We decided to treat the bone progression with rads and then switch to Verzenio/Anastrozole. Verzenio was rough on me so we quickly dosed all the way down and then escalated back to the mid dose. Unfortunately, my next scan showed spectacular progression and for the first time in my liver. On to Xeloda…and my last scan was spectacular. The best scan I’ve had yet. And my blood hasn’t been this good since I started MBC treatment. I guess my point is that it may take a try or two to find YOUR drug. If you don’t have the PIK3 mutation, there are other drugs out there. Good luck.

    Aprilgirl - It sounds like you had an eventful Fourth. Both good and bad. When my husband came down with Covid last January, I had been boosted in the previous November. I didn’t ask him to quarantine and I never got sick. I hope the cooties stay away from you as well.

    Candy - I’m so happy to hear your anniversary is coming up. I think you too were nervous to switch from Ibrance but things are going well for you now. ❤️

    Sending love to anyone I missed! This new format doesn’t allow enough posts on one page and I’ve learned the hard way that if you go to a previous page, you lose all you’ve typed. 😡

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