Using Ibrance again after intervening treatments

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EV11
EV11 Member Posts: 127

I was diagnosed de novo stage 4 (pleomorphic ILC) in May 2015. I had 42 cycles on Ibrance/letrozole (with intermittent Zometa) before obvious progression in my abdomen and colon was confirmed in the summer of 2018. I switched to Xeloda for 7 months with unremarkable results, then had three months on an immunotherapy trial with MUCH and significant progression. I recently started a clinical trial with an oral SERD (SAR439859)...I am in the arm using the SERD with palbo...The trial is designed for people with prior palbo exposure, with or without an ESR1 mutation (I happen to have an ESR1 Y537S mutation.)

I am wondering if anyone else is re-visiting palbo either alone or with another medication, in or out of a trial. If so, how are you responding to it? I've only been on the trial for two weeks, so it's too soon to tell how I am doing, or if it's working. Other than a tiny bit of fatigue I don't feel any different than I did three weeks ago!


I'm grateful for any information anyone is willing/able to share....

Elizabeth


Comments

  • BevJen
    BevJen Member Posts: 2,523
    edited October 2019

    Elizabeth,

    I don't have any information to offer you since I'm just in the middle of cycle 4 with palbo and fulvestrant, but I just wanted to say that I'm glad that you are feeling okay in your new trial. I hope it is successful for you!

    Bev

  • EV11
    EV11 Member Posts: 127
    edited November 2019

    Thanks, Bev...My trial appears to be going well. I am just about to finish my first trial cycle; my CA27-29 has been stable over the past few weeks, but my CA125 has dropped by about 25%...

    It seems that no one else is re-visiting Ibrance, or at least no one is responding to my query. But I'm thinking that this can't be the only trial that is looking at using a CDK4/6i after prior exposure. There seem to be so many new targeted drugs in trials, and so many mets patients previously on a CDK4/6i that you would think that some of them would try a new combination.

    I'll keep checking back periodically to see if there's anyone new posting.

    And I hope you keep on doing well with your first use of it. I know there are some people who have had more than 4 years on it. May you surpass their records!

    Elizabeth

  • EV11
    EV11 Member Posts: 127
    edited November 2019

    Here's an update in case anyone is following this out of curiosity...

    I just finished Cycle 1 Day 21 of the trial, SERD plus palbo 125 mg...shockingly, my ANC is a whopping 1.6 (down from 1.7 a week a go, and 2.9 at the start of this cycle.) The odd thing is that this time it seems to be really affecting my platelets...which were unusually low for me at the start of the trial (144; I'm usually in the 165-220k range.) But I have known bone marrow mets, and am thinking that they got active again when the abdominal mets woke up this summer...today they are down to 112K. Yikes...but I don't have to dose reduce, so I'll start the next cycle right back on 125 mg. I'm shocked. My ANC tanked to 0.6 by day 14 on 125 mg the first time I was on it. I won't be surprised if I eventually dose reduce, though. I'll keep posting intermittent updates her for posterity.

    May anyone who is reading here find a moment of joy in your days...

    Elizabeth

  • Simone80
    Simone80 Member Posts: 988
    edited November 2019

    Hi Elizabeth,

    I am still in my first time with Ibrance. My platelets have been low over 10 cycles, 93-140. My MO said that was ok and has never reduced it. It's normal for those other counts to run low also. She said she wouldn't reduce my dose unless my ANC was too low. It's always around 2.6 by the time I start my cycle.


  • EV11
    EV11 Member Posts: 127
    edited November 2019

    Simone--

    Thank you for the response-- It seems that platelets may be whereI am seeing the CDK4 effect this time around. I'll try to regain my sense of equanimity; I've never had platelet values so low before. Mostly I'm concerned that it is a reflection of more extensive bone marrow involvement; although my other blood counts are remarkably better at this point then they were at the similar place my first go-round. Maybe I should shift my perspective and focus on that instead!

    Regardless, my most sincere "Thank you" to you for the words of reassurance.

    Be well, and be happy...

    Elizabeth


  • Moissy
    Moissy Member Posts: 550
    edited November 2019

    Hi Elizabeth,

    I am currently enrolled in a trial studying Ibrance and Faslodex (both of which I had previously been on and stopped due to progression) and a third study drug Erdafitinib, which is an FGFR inhibitor. Like you, I had to start on Ibrance 125 mg for trial protocol, but my ANC went to .5, (same as it had first time around) and my onc had the discretion to drop me directly to the 75 mg. dosage on the second trial cycle, which is what I had been on for the majority of my first ttime around on Ibrance. Like you, I'm still too early for results. My platelets are doing ok on the lower dose also. I hope you see some good results and your platelets perk up soon.

  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited November 2019

    Hi Moissy, what is your trial #?

  • Moissy
    Moissy Member Posts: 550
    edited November 2019
  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited November 2019
  • EV11
    EV11 Member Posts: 127
    edited November 2019

    Hi, Moissy-

    Thanks for posting about your experience. I'll be following your updates closely to see how you respond. Did you have any intervening treatment after fulvestrant and Ibrance before starting on your trial? If so, can I ask what and for how long? And do you have an FGFR mutation? What prompted you to try this trial?

    I'm pretty surprised that my ANC stayed as high as it did and that my platelets dropped so significantly. I'm really curious to see what the values are at the end of my week off, and into the first week back on palbo (seeing that it has a 30 hour half-life and it's impact can continue through some or all of the week off...). I guess there is something positive that comes out fo the weekly visits during the early months of my trial!

    Here's to good trial outcomes for us both, and for everyone else-- from whatever treatment you are currently on.

    Be happy today.

    Elizabeth

  • Moissy
    Moissy Member Posts: 550
    edited November 2019

    Elizabeth,

    Yes, I have the FGFR1 mutation, along with ESR1 and PTEN. Just came off Xeloda due to progression and my MO presented this trial option. I have previously been on all anti-hormonals and targeted therapies that I'm a match for (Ibrance, the AI's, Tamox, Afinitor, Verzenio) and my next move would likely be IV chemo. We also discussed the possibility of trying Megace, but I haven't seen many on BCO try it except to increase appetite.So I decided to give the trial a try. My MO did keep me on Faslodex even while I was on other treatments like Afinitor and Xeloda. It's been about two years since I have been on Ibrance.

  • EV11
    EV11 Member Posts: 127
    edited November 2019

    Moissy-

    Well, I am starting cycle two, still on 125mg.

    After 6 days off, my ANC is 2.6 and my platelets are up to a whopping 165K (from 144K at the start of the trial 4 weeks ago, and 112K 6 days ago.) Go figure. Will be very curious about how this cycle goes (My and was 3.6 at the start of the trial, so not quite a full recovery...)

    Keep us updated on how you do with the FGFRi and re-visiting Ibrance...I hope you get a fantastic, durable, tolerable response.

    I am still getting labs every week throughC2, then (if I get to stay on trial) it drops to every other week. It will be so nice to not have to drive 7 hours to/from Seattle just for a blood draw every week!!

  • EV11
    EV11 Member Posts: 127
    edited November 2019

    Well, I am two weeks into cycle two of this SERD trial--

    and let me tell everyone that this is the EASIEST, most TOLERABLE regimen I have been on to date. Way easier than Ibrance/Letrozole, in that I have none of the AI-associated side effects. This SERD has minimal s/e for me (slightly dry eyes, a bit of constipation); and I am tolerating 125mg palbo better than I was the 75mg (although I am only two cycles in!)

    My platelets have recovered to 200K+, my ANC is 1.76 on day 15, and my WBC is 3.4...RBCs are a bit lower than I'd like at 3.3, but not concerning. All other labs are completely normal.

    My first on-trial CT scan is Friday Dec 6-- I'll get results on Monday Dec 9 and learn if I can stay on the trial. That would be lovely Christmas present!


    I hope all of you are doing well, getting a good response from your treatment, and looking forward with a light heart to the winter holidays. May you all be blessed with happiness, good health and the love of family and friends.

    Elizabeth

  • EV11
    EV11 Member Posts: 127
    edited December 2019

    Hello, all...This was cross-posted in the "Clinical Trials" thread....

    Well, for me at least, the SERD plus palbo trial was a bust.

    I had my 2 month CT scan yesterday, and despite the fact that SCCA won't release the scan before your appointment with the onc (scheduled for this Monday), I got the results last night.

    My local onc scrounged around in her patient portal for me and sent me the report last night. Unfortunately, it shows that there is more ascites, thicker stranding in the omentum, slight growth in the bladder lesion and two new lesions in my lung...I've not had lung mets before, so that is a bit of a shock. They are 1.2 cm and 6mm in the longest diameter, but appeared in two months, so are significant. I have not been sick, and unlike a few years ago when I had two odd-shaped lung lesions appear, these are ovoid and look like metastases....the ones in January and April 2018 were very oddly-shaped and the radiologist noted "not typical in appearance." Those disappeared over 6 weeks when I was off drugs waiting to get onto a trial. One of the lung lesions was going to be my "measurable disease" for the trial, so when my start of trial scan showed them resolved, the trial was off. But I was never so happy to fail to meet inclusion criteria! These look more like cancer...I'm going to see about a biopsy (I'm wondering if my HER2 equivocal disease--2+ on IHC but ISH negative-- might be driving this more than the ESR1 mutation) but they might not be in an easy to access place, and even at 1.2 cm, might be too small. I know the 6mm one is.

    So I imagine I am off the trial. I will learn my fate officially Monday morning. I am so thankful that my onc understands my preference to know the scan results prior to our appointment so that I don't feel blindsided and can come to an appointment with some well-though-out questions rather than spend our appointment time digesting the news. She worked behind the scenes late on a Friday afternoon to find the results for me. The trial is at a different cancer center, in a different state, and they are not on the same EHR system that her clinic uses, so it took a bit of work. She's caring and thoughtful like that, and I am so grateful to have her as my usual doctor. Se will be at SABCS next week (I won't--ugh) and says she will be on the lookout for some new ideas for me.

    I'm sad. I'm scared. I don't know how to tell my 16 year old daughter that yet another treatment was ineffective. But it won't be tonight-- tonight she and her best friend of 10 years and I are going for our annual outing to have a nice dinner and see the Nutcracker. This is our 8th year in a row for that. So this morning the three of us will decorate our tree, do a little Christmas shopping this afternoon and then enjoy our annual outing.

    I might just try for one of the HER2 low drugs next. My local cancer center is just starting a phase 1 trial for HER2 expressing solid tumors using A166...I'd really like to get into the DESTINY trial, but that's phase 3 and I could be randomized to the "standard of care" chemo only arm. There's no crossover to DS-8201 if there's progression on chemo, so it's not quite as appealing. I'm open to thoughts and suggestions from any of you smart, innovative thinkers!

    I hope you all are feeling well, and finding happiness and joy in this holiday season.

    Peace...

    Elizabeth

  • Chico
    Chico Member Posts: 196
    edited December 2019

    So very sorry Elizabeth that this trial has not worked out for you. I wish that I had some useful information to offer you but sadly I don’t however I am sure that others will chime in very soon. In the meantime I hope that you and your daughter and her friend have a wonderful evening and that by the time you have your appointment on Monday that you have a long list of questions and suggestions.

    Best wishes and good luck. Xx

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