Ibrance (Palbociclib)
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Well, my big update today with my oncologist was not what I was expecting. The PET scan report said they found no sign of cancer in any bones but my oncologist was not convinced. There were a few bright spots she pointed at and said "well, what is that then?" She's going to follow up with them, but it wouldn't have changed the treatment plan. What did change the plan was the new mutation test result. Turns out I have the mutation that Piqray targets! So no Ibrance for now. I was a little disappointed (okay a lot) because I'd read all about it and felt like I was prepared, only to be given something totally different and unknown. And from what the pharmacist said, it seems like the side effects are way worse, more like what you get from good ole AC. They even gave me some of the same meds to help with side effects! So that was disappointing to hear.
The two main Piqray posts in the forum are also very quiet and I don't know what to make of that.
I had also gotten the impression that Ibrance was used first and that Piqray was a second line treatment. (I have no facts to support this, it was just from scanning everyone's treatment history in these forums!) My oncologist said we'd do Ibrance next if Piqray doesn't work or stops working. So my question before exiting this conversation is has anybody done that? Had Piqray first and then Ibrance?
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Parakeet- You might find this guide helpful. https://www.nccn.org/patients/guidelines/content/PDF/stage_iv_breast-patient.pdf
I was tested for the Pik3mutation after starting Ibrance. If you do go on Piqray first, I wish you the best of luck. Hugs.
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ParakeetsRule,
This is probably something that I would try and get a second opinion on, frankly. I have the Pik3 mutation, which was known if I recall correctly when I was put on Ibrance. It was my impression that Ibrance/kisquali/verzenio were first line CDK 4/6 treatments and Piqray would be a subsequent treatment. Obviously, I am not a doctor and don't know this for sure, but that's my impression.
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Is it a bad sign? 😬
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ParakeetsRule: I agree with Bev Jen. I have the PIK3ca mutation and would be hesitant to go on Piqray as a first line treatment. Did you receive information on your domain type, double/single mutation?
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If they tested that they didn't mention it. I've never heard of those!
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Hello ladies! It’s been a few days but it feels like forever as this thread moves so fast! I got both my COVID booster and flu vaccine on Monday and suffered some nausea and vertigo. So not too bad. Cardiology told me that my heart looks fine and they can’t seem to find a reason for the tachycardia. Doing some labs to check cholesterol but the cardiologist thinks it’s probably just all the meds and situation that’s caused the problem. Then I had a palliative care appointment face to face. It went pretty well, the doc is prescribing me some more sub-lingual zofran and has recommended I take 2 morphine ERs at night. I did it last night and slept great! And she’s putting in for more acupuncture. And finally, today was the start of cycle 4. I got my Zometa infusion and Lupron shot. So far, so good, just a little nausea. Took my Claritin yesterday and today.
My visitors are still here. But my mother has been in bed just about every day by 3pm. My grandma is about half deaf and you have to raise your voice to get her attention. Not really getting a lot of support lol. I’m just ready for everyone to go home. I miss having the house to myself during the week.
Rabbit - So sorry I missed your birthday! Happy 40th!!!! I hope you had a wonderful day 🎉🎊I hope your pain is under control.
B-A-P - Your ANC level looks great! I wonder why they think it’s too low? My MO says I’m good as long as I’m above 1.0. Good luck! And congrats on the hair styling! Have a great birthday dinner 🎂
Aprilgirl - I hope your scans went well today! I’ll be in your pocket until you get your results, with plenty of winter-y snacks and all the one-hit wonders from the 80s.
Sondra - I’m glad you’re healing! Good job on your short walk!
Spookie - Your kitty is so cute! And looks so innocent 😇 😂
Chicagoan - Happy belated birthday! And congrats on the 6 years since dx
The rest of you ladies I hope are having a great week I think about y’all a lot, even if I’m not posting. This has been a great source of comfort to me over the last few months. Thank you! And I’m sending out happy thoughts as always
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Parakeets - And if you are on Facebook, you may want to join the private group “Piqray and those with PIK3 mutation support group”.
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Ooh, thanks! I'll check it out!
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ParakeetsRule: I would inquire more about your PIk3 mutation. Can you obtain a copy of your Testing? Literature review mentions "hot spot" domains and double mutations have a greater sensitivity to PI3Kα inhibitors. As RK2020 has pointed out the FB group has an active membership, which I belong too. Hope to see you on FB.
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Parakeet, Probably your MO is suggesting Piqray for firstline because there is evidence that the PI3KCA mutation causes the cancer to become endocrine (AI-) resistant, and therefore you might not get a long run on Femara/Faslodex-Ibrance. I see you were taking tamoxifen before- there are some recent studies indicating that tamoxifen can increase PI3K signaling and the chances of getting PI3K mutations, so some are advocating that Piqray should be added in when tamoxifen is given to lower that risk. Anyway, the tamoxifen may have pushed the cancer to mutate PI3K in order to escape the drug.
It's not that any particular mutation is "bad news", it's important information, and suggests that if you choose to try Ibrance-Femara/Faslodex for firstline, you should see if you can add in something to suppress the PI3K signaling pathway- if not Piqray, then perhaps drugs that inhibit other enzymes in the PI3K pathway, such as Everolimus (mTOR inhibitor) or an AKT inhibitor. Piqray alone does not have a great track-record, although it works really well for a subset of patients (including those who have multiple mutations in the PI3K gene), so they are looking for biomarkers to better identify the group of patients who would get a really good result with the drug. But without knowing if you are a great candidate, its possible that an not-so-great response to Ibrance-Femara/Faslodex could still end up being significantly longer than an average run on Piqray, and you might move to it secondline Anyway, as BevJen and Tink suggest, a second opinion with someone at a major cancer center, preferably one with clinical trials, would be really worth it in your situation, just to be sure.
PS Piqray has an unfortunate effect of elevating blood sugar- a good way to try to get around this is to follow a daily intermittent fasting schedule (eat only within a 10-hour window. and then take a water-only 14- hour fast, this allows the body to burn off all the sugar that accumulated from the day; this is now being used in clinical trials).
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Thanks! I can check my online records portal. They are pretty good about uploading stuff. I do like and have always trusted my oncologist though. This is the first time I've been genuinely puzzled by her treatment plan, so she's probably got a good reason. But you never know, nobody's perfect.
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PPS The PI3K mutant cancers are less responsive to anti-estrogen therapy, but just as sensitive as non-PI3K-mutant cancer cells to the CDK4,6 inhibitor drugsHere is a link where they are discussing the drug, note the good response of someone with a dual mutation. If you end up taking metformin, the fasting schedule will make it work a hundred times better. very important to control the blood sugar or else the drug will not work
https://www.onclive.com/view/managing-patients-wit...
here is a link about intermittent fasting
https://www.nature.com/articles/s43587-020-00013-3...
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Thanks for all that detailed info Cure-ious. That's very helpful. I think I'll talk to my oncologist soon and see what she says, and then look into a second opinion.
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Katyblu- They think my ANC is fine
my ANC was 1.9 half way through cycle one at 100mg and now 1.7 at the 75mg. So the lowered dose hasnt made much difference yet. But it’s me that’s worrying because then my ANC tanked to 0.6 last time on my week off and I ended up with peritonitis again. So I was hoping that at halfway through the second dose, it would have been a little higher to give me a little buffer zone for my last week and week off. I think if I can keep any possible infection at bay (like no peritonitis ) then we will be okay to keep going albeit probably a schedule change (like 3 and 2 ).
So yes, as of last Friday it was totally fine, let us hope it stays that way.0 -
RK- I missed your comment. Thanks so much for contributing
I know my Mo is open to switching the schedule a bit if it stays low and I think I might ask for the extra week off even if my ANC has improved on the week off. I don’t want a dip around Christmas. Like I mentioned to Katy, I think things will be okay to continue as long as I don’t get another infection since ascites is still an issue.
I doubt they’d want to continue if every time my ANC is under 1 , I get hospitalized. I also think the stress of them telling me no chemo anymore/it’ll speed up my death, has got me stressed that they won’t let me try anything else period. If that’s the case I’d ask for an out of province second opinion (my Center is small and they all tend to just agree with each other). I’m probably overthinking it but I’ve had so much trouble over the years being heard that I lack trust.Thins will likely be okay. But until then I wait. Last pill of cycle two is today
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BAP - I think 1.7 is good for ANC. My MO gives the OK for me to proceed when my ANC is above 1.0. Try not to stress. There are other options out there if you need them.
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Thanks GoKale
It’s 1.7 after two weeks. So hoping I stay above 1 during my third week and my off week. Last cycle it was fine at two weeks and then totally tanked on my week off.
As for other options … I know they’re there , but they have been telling me I’m not strong enough for chemo. Hoping she will be open to verzenio if there’s a need to switch. When discussing cycle two she was like “we can try a lower dose or do nothing , but I assume you don’t want to do nothing” So I think it’s that comment that is making me concerned.
Technically , the counts are supposed to go up on the week off no?
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Hi BAP - yes, counts should go up after 1 week off. Early on I had to take 2 weeks off. I hate what your doc said to you about the option of "doing nothing". If it were me, I would look around for a second opinion so you can start calling if your doc continues to be pessimistic. I'd much rather have false hope than pessimism.
There are different schedules that other people have talked about -alternate weeks take the Ibrance, then take a few days off. I don't know the details. Someone else who does this might chime in.
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I'm on the 21/7 schedule of Ibrance. Just had my CBC mid-week of my off cycle and my ANC was 1.14. Grade 1 neutropenia, I believe my MO called it. I'm OK to start my next cycle on Saturday. The lowest I ever went on the 125 dose was .44. Since I've dropped to the 100 dose I've stayed pretty much over 1.0.
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thanks GoKale. I will see what she has to say. It’s hard where i live cause they (the MOs) all work so closely together and she is the head of breast oncology. I trust her , I like her but those comments have bothered me and caused this stress. She did mention a possible alternative schedule so I think if I can stay infection free then it’s an option. I am going to ask about other options in the off chance it doesn’t work. I can’t handle the pressure of feeling like this is my last chance when I know there are other options. I don’t know how I’d set up a consult out of province but I will do what I have to. I guess all I can do is wait. I see her next weds after blood work to see if I can restart on the 17th. My off week starts tmr
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B-A-P,
There was another woman on the boards (Candy 278) who had issues with counts, and I think her doctor put her on a modified schedule. It was based upon research done at Washington University in St. Louis, Missouri, and if I'm not mistaken, they publicized the research about a year ago and talked about an alternative schedule of dosing. You might want to find that research and show it to your doc. Just a suggestion.
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thanks Bev , I will look around. I know she’d want to try 3/2 first because she said to me last time they’d like to get the three weeks in if they can. But if I can arm myself with info that there’s many acceptable schedules she may be more willing to go my way.
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B-A-P-- BevJen mentioned me in her post. Yes. I had trouble with my counts with Ibrance. I started on Ibrance (2017) at the 125mg dose. My ANC went down to I believe 0.4 (400) early on and my then onc freaked. He was new to Ibrance. We paused me and restarted me on 75mg and that is where I stayed for the next 4 years. But I always had trouble keeping my ANC up. Then it dipped again in early 2020 and I changed cancer centers. My new onc at Wash U in St. Louis said we would try a 5/2 schedule--- on 5 days, off 2 days. No week breaks, just the 2 days each week for the break. They did a clinical trial at Wash U about this alternative schedule and found it helped ANC counts while still being effective. My ANC hovered around 800-1000 (0.8-1.0) each month when we checked it (since not a week off, we checked it once a month the same time each month). My onc (still my onc today) was ok with my ANC numbers, knowing I was one of those that struggled with ANC numbers on Ibrance. I never was sick during my time on Ibrance, thankfully. Since then I have moved from Ibrance due to progression. My new med, Lynparza, doesn't seem to knock my ANC as bad--- last blood test my ANC was 1700 (1.7) !!!! Highest it has been since the cancer started.
You can probably scroll back to around August 2020 to see my posts about the Wash U clinical trial. Or check clinicaltrials.gov for the info. I will try to find a link and post it here for the trial info.
Edited--- Here is the link to the trial info.
https://clinicaltrials.gov/ct2/show/NCT03007979?te...
And I found this...
https://cancerres.aacrjournals.org/content/80/4_Su...
I know it was presented at the SABCS but I cannot find what I wanted concerning the conference.
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thanks for the links Candy ! I will for sure be armed with this.
I’m glad you got 4 years out of it despite the ANC. Since I got the peritonitis last time , I always feel like I have this added issue I have to look out for (stupid ascites).I have been sounding like a broken record on this thread. There’s just a lot going on and riding on this.
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Well I got my mri report today and it's not a good one. "There is interval increase in size and number of hepatic lesions." It says at least 5, largest measuring 1.8 cm, and 1.7 cm. I'm pretty sure my Ibrance days are about over. I see my MO next week and will find out what happens next. Ugh.
(Cross posted to Mel’s living room)
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Oh Rosie, that sucks. I'm sorry to see that. Any known mutations from before that you think will point to the next path?
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Thx Sondra, I haven’t any tumor or blood testing for mutations yet, I guess I should have that done. I only had the basic genetic testing at the beginning and nothing like brca showed up. Would this be Foundation One testing that shows mutations?
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Rosie - I am so sorry about your news. I think either Foundation 1 or Tempus are the tests you would need. I had the Tempus test right after I was diagnosed with the recurrence that had progressed to stage 4 in September 2019.
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Rosie,
Another test is Caris. There are probably others. And some centers are developing their own genomic tests as well. I'd contact your doc immediately if you want to do that because they will need a tissue sample, usually from a biopsy. It takes a little while to get these results back, so if you talk to your doc, he/she might want to do that sooner rather than later.
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