Ibrance (Palbociclib)
Comments
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Has any of you ladies experienced a rise in lymphocytes numbers during your week off? We just got CBC results back and not only neutrophils are still low but lymphocytes and monocytes levels are higher than normal range. My wife doesn't have any sign of apparent infection going on though, no fever, no sore throat.
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leapfrog,
I have been on the ibrance/femera combo since january of 2016. My pet scan this may showed one active met on my spine. My MO said that this wasn't uncommon and chose to continue my current treatment. I was surprised, thinking this meant progression and my treatment would change. My tumor marker actually decreased. Anyway, I am still on this combo and hoping I get a little more time out of it.
Melissa
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lissalou, my oncologist says we won't stop Ibrance for small progression. He said that can even be false information on a PET. Maybe just inflammation? I'd let my brain run with that until the next scan! I'll be praying! PatG
Do you take XGeva?
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Thank you KarPC and holmes13 for your responses. I feel better knowing that you were able to get Ibrance. *keeping my fingers crossed*
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Dear friends, tomorrow (Monday) is the day of my 6 months PET/CT. I'll get results on Wednesday. I know God totally has this but I would sure appreciate your prayers for peace and PFS. I'm thankful to be feeling pretty well this time. At my last scan I had pneumonia but didn't know it. Sorry for the WTMI but I coughed up blood at the radiology clinic that day and had a dilly of a time trying to be still and not cough for all those minutes. I didn't tell the techs about the blood because I knew they would send me to the ER and my sweet husband, who was sitting outside in the car, would have to be called. It's amazing what we'll do to avoid drama, isn't it?! Well, I'm 20 months into this Ibrance Dance and hope very much to be able to ease my husband's mind by being progression-free again. I feel pretty confident.
Love to all of you tonight. My prayers will be going up for you during the scan.
PatG
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Prayers for sure PatG...And ty for yours while you're having it done...
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Daniel86, I just checked my lab results and yes, I have seen an increase in lymphocytes in off week. Last lab also showed a spike in atypical lymphocytes, but when I pointed it out to onc nurse she wasn't concerned.
Yaelle, so glad you dropped by. Hoping the chemo wrestles your cancer into submission.
Jens, how you feeling?
NMJanet, good luck with the lower dose. I'll be heading to a lower dose myself in a month so will be curious to hear how you tolerate it.
Leapfrog, are you experiencing symptoms that have you playing the "what if" game? Hope you are well.
PatgMc, God totally has this but I'll send a prayer asking for a little extra grace and strength for you this week. I pray for all you ladies all the time. Isn't it wonderful that we have these invisible threads that connect us together?
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PatgMc - Prayers and positive energy sent to you, here's for progression free scans!!
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Ciaci
I went to Sloan in Commack on Long Island.
I did not like the way they handled things there.
Doctors mention nothing about my bone cancer. No tests! No drugs!
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Prayers PatgMc. I pray that you and your hubby are celebrating on Wednesday.
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Piggy99
Thank you for your wealth of knowledge.
This is what my last *second' PET/CT CT impression after being on Ibrance and letrozole for 4 months.
IMPRESSION:
1. Findings overall indicative of response to therapy with interval decrease in metabolic
activity in and morphologic appearance of previously described lesions in the left breast
as well as left axillary, retropectoral and supraclavicular lymph nodes.
2. Decreased FDG uptake in the previously described osseous lesions in the right rib and
right greater trochanter.
3. Mixed response in pulmonary lesions with increasing FDG activity in and morphologic
stability in the lingular nodule. Interval improvement on PET and CT of the right lower
lobe pulmonary nodule.LUNGS AND AIRWAYS: Stable nodule in the lingula with slight interval increasing FDG
uptake, as described above. Previously described nodule in the superior segment of the
right lower lobe is not as clearly identified on imaging. No new pulmonary nodules are
identified. Stable moderate emphysematous changes and peripheral scarring. The major
central bronchi are patent.0 -
Chrstene, this looks like a report most people would love to get after just 4 months on Ibrance. Are you unhappy with this?
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Jensgotthis, Penny-78, Lissalou, Jaylea.....thanks for your response and sorry for any wrong spelling in your screen names. It's hard to hold them all while scrolling. I thought it would probably be the addition of Fasiodex (we call it Fulvestrant in Australia). I doubt very much that I do have any progression, Jaylea, but yes I am playing the "what if" game for the first time ever. I have several active tumours, I know that, always have even since I started treatment but every so often they remind me they're active. This last week I've had stabbing pains in those spots, especially the T6/7 tumour but a lumbar one and some of those in the orbital region in my skull have decided to chime in, which hasn't happened since I started treatment so I sort of freaked out, just a little bit. I'm not normally prone to worry as most of you know. But I had cancer for at least three years before it was diagnosed as de novo Stage IV which is always in the back of my mind. My MO told me at my last visit that though my bone scan is clear there is sclerosis and it's not always possible to know if there's anything hiding underneath it. This is all kind of new to me, even though I'm now eighteen months out since diagnosis because, after diagnosis, I immediately had bilateral mastectomy then went on a trial for Ibrance/Letrozole and, as all my scans have shown stable disease....ummm....I'm still new to this game, really. And PatGMcR...I read your words....wise as ever, thank you.
I guess I'm just feeling a bit vulnerable at the moment for no obvious reason that I can pin down other than knowing that activity is still happening, even after my 14th cycle.
Pat.....praying for you this week but, like Jaylea, I pray for all of you every day. Yes, it is a wonderful thread that connects us all. Quite overwhelming at times when it's almost palpable.
Hugs to everyone.
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Prayers for you, Pat, during your scans.....and for all.
Just back from my 50th college reunion. Whew.
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Leapfrog, I've got you wrapped in a big hug right now. PatG
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Pat, adding my voice to the chorus of ladies wishing you great scans.
Chrstene, those results look pretty good - good responses everywhere except that lingular node, which looks stable by CT and slightly more active by PET. Hopefully it's an artifact or healing activity.
However, it does seem like there are still active spots outside of the breast, so not really sure why your doctors changed their minds regarding the surgery. My only guess is that perhaps their philosophy is to generally treat MBC patients with surgery unless the breast tumor is too big to be removed cleanly, and yours has now shrunk enough to make you a candidate. Sort of the way they approach surgery for early stage people and sometimes treat with neoadjuvant chemotherapy before surgery to increase the chances of getting clear margins.
Please do ask why they feel differently about surgery now than four months ago, and perhaps look for a second opinion if you're not comfortable with their answers. Personally (and I'm not saying that this is anything more than a personal opinion from a patient, not a doctor) I would be a little uncomfortable stopping this treatment that looks like it's been working quite nicely for you to undergo extensive surgery and I would want to give it a bit more time to see if you can achieve NEAD just from systemic treatment. I'm sure people will chime in with opinions from both sides, but for better or for worse, you will ultimately have to decide for yourself (with hopefully a great deal of reasoning from your physicians).
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My MO is convinced ,that for me, Ibrance is working alone.
Anyone else ever heard anything about this possibility? I’m still in shock. But, after my most recent PET report, I think she is right.
I’m ESR1, therefore the AI that is required by FDA in order to RX Ibrance, is ineffective for me. Makes perfect sense till you look at the studies.
I had another excellent report that shows a great response. I’m 18 months out on I F only. If I continue to have this response on the next report I could be considered NEAD. The active MBC is in my lung and chest.
At DX I had liver mets, they did not respond, so I had y90. I’m one year out and have had no uptake since y90.
I’m excited to be where I am and hoping I will be NEAD on my next scan. Doing happy danc
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Christene, great advice and questions above from other posters. I'll only add that with a bone-only metastasis, it's especially hard to get a read on exactly how the lesions are or aren't responding to treatment from scans as bone lesions don't generally disappear but become sclerotic. And there can be flare-ups when they are healing which imply progession when that is not the case. So another plus in the camp of not surgically removing the primary is that it is much easier to measure response. FYI I believe that my MO was in the no surgery camp, though since a primary was never located in my case it was a moot issue and we didn't discuss pros and cons.
PatMg, my prayers and very best thoughts are coming your way!
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I'm not great at interpreting the data but this research coming out of ASCO looked like potentially good news, with ribococlib combined with fulvestrant working well in a second-line setting as well as a first:
http://www.targetedonc.com/conference/asco-2018/both-frontlinesecondline-benefit-with-ribociclibfulvestrant-in-hrher2-breast-cancer-across-frontline-and-secondline
It does *not* appear that any of the subject were previously treated with a CDK4/6 inhibator though. Others who know more please weigh in.
Cure-ious, I was also both disgusted and disappointed by the P13K inhibator study handling (i.e. the PR) and results. I did note that some of the press releases still suggested this is a promsing research avenue. What do you think?
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Trying that link again:
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If you weren't around when Judy Perkins' cancer cure first made the news last year, please read this article and boost your hope! There's a long way to go before this treatment and/or future versions of it are available but it's important for all of us to be reminded that a cure for what we have is possible and even probable. Tell yourself that everyday!
You'll see a lot of articles about Judy today since the big announcement was finally made and most of them will use MBC and "terminal" in the same sentence. I have always refused to accept that inevitability because I have friends who have survived MBC for decades, therefore putting long-term remission/cure in the realm of possibility. Am I right? Yes!!
Here's to Judy, another pioneer much like the Ibrance Dancers here!
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Just reading to see how you all are doing, as a Ibrance dropout😉 I’m doing well on Tykerb and Her & letrozole. So I’ve been stable on this..after last PET ... no new Mets. So changing treatments has helped me realize there are other options.
Pat sending good wishes & prayers your way. Loved the article on Judy. Reading the ASCO news is very hopeful . I just read an article today saying that MOs are using different strengths of various drugs and seeing a response.
I think of you all since you were my first friends on this journey. I see some of you on bone mets. Take care all you wonderful BC sisters. Maire0 -
Hi Penny,
I'm a scientist, and if any of the big meetings I go to did something like that, heads would roll!! They are there to help the world interpret and understand the implications of critical research, and digging through the huge quanitites of data pouring in from hundreds of clinical trials to pull out the best of the best results. And its not like they don't have lots of experts who they could ask for help combing through the pile. Plus how hard is it? Any of us could have told them two months benefit is a big disappointment.
There are still some stories and even a PR piece from MSK making it sound like the results are promising, here is a new type of drug, etc, but probably because the reporters were just working off of the press release that ASCO put out, and they obviously did not see the news release from Roche that it is dropping the drug. Here is one story that did: https://endpts.com/roche-dumps-its-phiii-pi3k-effo...
Others put a positive spin on it despite the negative outcome in this particular trial, basically saying we know we need a drug to beat back this PI3K signaling pathway because it is common in MBC, and science just has to find the right drug that will work. And indeed we already have a drug in this pathway, it just breaks the pathway it a little further down in the chain of events, and its called Affinitor- but that drug is old, not very sophisticated, and they know the once they can develop something that will only work in the cancer cells and not all cells then they will get rid of the worst of the side effects of Affinitor, and presumable get something that is much stronger, lasts longer, etc.
Pat- I wanted to make a point for Judy's case- it was very usual- when they did the genetic testing of her late stage cancer (and she was months from death, that is the most amazing part of her story!) they found it her cancer expresses a protein called CD19. Most breast cancers do NOT express this protein, but they had a CAR-T therapy designed to go and kill CD19-expressing cells, so as soon as they saw her genetic test, it was obvious she was a great candidate for the CAR-T trial. And it worked! But it was a needle in a haystack kind of thing, very very few breast cancers will ever be found to express that particular protein.
However, they are banging away hard on CAR-T, something will eventually break in our favor in the immunotherapy field, one way or another, and its going to have a huge effect, the only part we don't get to know is when it will happen!
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Thanks, Cure-ious, my oncologist is confident the CAR-T will break for us too. He's an old St. Jude researcher so I have confidence in his instincts. He often tells me he used to go a year or more without a new drug and now he can hardly keep up. He's well into his seventies and I'm so happy he's still practicing at such an exciting time. He has always been passionate about helping patients maintain a good quality of life and that's happening with more and more of the new drugs. I'm thankful for him and I'm thankful you're here sorting all this out for us! PatG
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Hi Everyone. I was only in this thread for 3 months last summer as I had substantial progression immediately on Ibrance. I still follow all your good results. One thing that has been a mystery is why some are either immediately resistant or become resistant to CDK 4/6 inhibitors. Some Harvard scientists are starting to crack the code. Here is a poster from ASCO on which mutations cause resistance. Now they will begin to work on therapies to inhibit those pathways. One mutation is AKT which might be addressed with triplet therapy along the lines of Ibrance/Afinitor/Aromasin. This is good news for those of us who are moving quickly through treatments
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Thanks, Pat, your MO is the best!!!
And MaryLark, wow- a poster, love it!! Yes, those who got progression already when they were on an AI are probably endocrine resistant (kinda by definition, at that point) and some are almost already there, where often the PI3K pathway has been turned on and is driving the growth of the cells at that point. And if they can beat that pathway down, then the cells start growing on estrogen again, and so that's why some can return to anti-hormonals after having been on chemo or some other drugs in between. There was data in one ASCO abstract, and it might well be the one from Broad you are showing the poster, that identifies how one becomes resistant to Ibrance-Femara (in terms of what changed molecularly in the cancer) and they concluded that it was most often getting mutation in the Estrogen Receptor itself (called ESR1; the mutation makes the ER work and be active even in the abscence of estrogen, whereas it normally is active on when estrogen is present) and the others are in the PI3K pathway. There are others as well, but the most common ones on Ibrance-Femara and the ones they see on Femara -alone, which indicates that if you move to Faslodex, you should keep going with a CDK4,6 inhibitor. But then you'd also like to incorporate Affinitor or something in the PI3K pathway, in order to keep that pathway off and make the cells as dependent on estrogen as possible...And that's all do-able, unless you have big liver problems and they need to move over to chemo for awhile..
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Oh, I see the poster is about how one can develop resistance to CDK4,6 inhibitors, its growing into quite a list of different ways. But the ASCO abstract indicated that only about 4-5% of the time does the I-F resistant cancer contain a mutation that makes it resistant to Ibrance or its sister drugs. Most of the time, the cancer has become resistant to Femara only, and still would be sensitive to CDK4,6 inhibition..
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Cure-ious. I'm one of those unfortunate 5% that has a couple of the mutations that cause intrinsic resistance - AKT-1 and FGFR1. I failed on Ibrance immediately. This is exciting research for me as it opens up new combined therapies. And researchers will know what to pursue in new drug development. It gives me hope when I have had none. I hope that folks like me will see this and have hope too.
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Good evening everyone,
Earlier today I went to my MO for a bi-monthly office visit and my monthly Faslodex shots. I also started round 30 of the Ibrance. During my conversation with the MO about the fractures I've been experiencing in my Lumbar spine over the last several mos., she urged me to have a nuclear bone scan since my last one was 6 mos ago. I told her I didn't think that the fractures are related to my BC (that could just be me trying to stick my head in the sand, but I hope not) and the MO reminded me that at some point the Ibrance as do all cancer drugs will stop working and I'll have to move onto something else, and that I have already out lived the average Ibrance user. While I understand that this is true and I know that she was in no way being unkind, her statement just hit me like a brick and has really messed with my brain. Anyway, so now I wait for the hospital to get the order for the scan and then for the results afterward.
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Leapfrog, holding you close as you navigate next steps.
Pat, praying for great scan results.
JunieB, I see my MO Wednesday, 3 days short of my 2 year mark, so I have gathering apprehension also. So far, I am good, but I have increased fatigue and back pain, so we shall see. It is tough enough to go through all of the physical ills without dealing with the mental issues also. I am so thankful for this site where I know I am not so isolated. Although I have several people around me who listen and care, they don't understand. You all help!
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