Ibrance (Palbociclib)
Comments
-
Zimmerwoman - Congrats!
Apg - I am curious what they say about the pap smear. I am really hoping the answer is ... no pap smears for you because of all the drugs. I really can't deal with another diagnostic test to worry about.
>Z<
0 -
LaLaLady- France in July, c'est magnifique! I will be at a conference in Paris in June and am just hoping to stay stable till then! Anyway, if you haven't been, I highly recommend the fireworks at Versailles- truly amazing! They have a symphony hidden behind the hedges, light up the fountains to the music and an incredible parade floating down the grand canals before the fireworks; Disney has nothing on them!. You should try to stay overnight locally, because the show ends at midnight, right after the train stations close. You need a separate ticket from the day entry, and can book it through Viator
0 -
Here is a clip of a discussion where Hope Rugo/UCSF mentions they are seeing good results with PI3K-alpha inhibitors taselisib and apelisib in clinical trials for MBC; she also seems to be advocating for using circulating tumor cells to test for the PI3Kalpha mutation, because it is often not present in the original archived tumor samples, but rather the mutation often appears as the cells become resistant to AI-Ibrance therapy, enjoy;
http://www.onclive.com/peer-exchange/breast9-precision-medicine/pi3k-inhibitors-for-hr-breast-cancer
0 -
-
Thank you for the good wishes, Moissy. In your situation, with mostly stable, I think just adding Fas was a clever way of continuing what was mostly working and also addressing the limited progression.
Cure-ious, I'm glad to know you think my choice was a good one. I know of the TRINITI-1 triplet trial, but it is using Aromasin , not Faslodex. It is testing Ribociclib, exemestane, and everolimus. So there are two targeted therapies -- CDK 4/6 and mTOR -- plus that anti-estrogen. I agree that for someone leaving letrozole + Ibrance, Fas would seem a better choice as it replaces the aromatase inhibitor with a SERD. I think we will see more triplet trials happening. What is the one with Faslodex?
You know, as far as getting drugs authorized by insurance, I also had one onc tell me I could get my current combo approved and another onc tell me I couldn't. The first one was right.
Many, it is understandable that it worries you for your wife to be off Ibrance longer. Remember that she is still on her anti-estrogen drug, and that a longer break may be necessary to keep her body healthy in general, which is also important. Perhaps they will re-start at 100 mg so she can stay on schedule.
Time-for-a-cure, 22 months for me, but my TMs were creeping out of range before that, without the scans confirming progression until recently. MJH, if you do have to switch to Faslodex, I'll be there welcoming you to the Fas thread (I'm taking afinitor with it). I had the Foundation One genetic test of the tumor, and while it did not find any currently actionable mutations, it has been useful. This is because I can follow news of treatments or trials related to mutations, and check to see if my test included the one in question. Claire, I hope to hear that your TMs have moved in the right direction! DC197, yes there are treatments other than chemo that you can use if needed; for example, Faslodex or Aromasin with or without Afinitor. If anastrozole got you five years, maybe that means Ibrance + letrozole will get you a long time, too.
0 -
Mediclisa, it looks like you have sort of alternated between chemo and endocrine therapies. Does your onc say anything about that? I hope things calm down for you. Apg, if you just had surgery, then yeah, I would think inflammation could be the problem. I would ask if it is ok to wait a bit and re-test. Have your gyn talk to your onc so they can coordinate. Mominme, it may be that if your counts are that low, you do not need the higher dose. Deanna, so they told you at UCLA that it is more important to keep the higher dose than to keep the schedule? Of course, a few days is different from two weeks or something. Zimmerwoman, nice to hear your good news. LIL, maybe they will lower your brother's dose. I hear you on not wanting more diagnostic tests to worry about, Zarovka. I've had a couple non-bc tests recommended by doctors lately, and I tell them that I can only handle so much at once, and that their test is on my list for later.
0 -
I am starting my fourth round of Ibrance today.
When I started this drug I was bald bald. I kept asking my oncologist every time. Are you sure my hair will grow back? I had hair half way down my back and i was like Linus with his blanket, with my hair. Loosing it devastated me, still does. I try to avoid pictures, reminds me of Yet another loss. slowly it started to grow!
My head has thick dark hair. Of course it's not what it was, but it's there, growing everyday. Side effects are mild compared to heavy chemo by far , but there are some I've noticed regularly. (I take 125 mg with hormone blocker daily, 21 days on and a week off of ibrance, not blocker.) Headache frequently, especially without eating. Even though food tastes like card board. Dizziness, over all general flu like feeling, not terrible, but not like I used to be. Joint pain, terrible Heat flashes, fatigue never goes away, sleep is a must. Somedays the effects aren't as bad and you think "hey this is not so bad" . I keep up on pain Meds to keep ahead of bone pain which is where my mets ended up. I am stage four clinically. But only have cancer in my pelvic area bones. Surgery removed all left side lymph nodes and breast, scanning for prep and diagnostic testing, showed it spread to liver in a small area. Had liver surgery and mastectomy same time. After healing was over and was finished with chemo it was determined small spots were found in my bones in the pelvic area. So that is what I was left with, surgery a great success,
To only exchange for those little buggers nesting some place else. The ibrance is wonderful compared to cytoxin and adrmyicin. The hard chemo is rough, caused some neuropathy in my hands and feet. Which is really tough to deal with. I send prayers and blessings to all us warriors dealing with this. My new thought lately has been, we all know during life we will have to dance, we just don't know what song yet . rest well. It's all we can do!
0 -
Micmel, You reminded me when my hair started growing back in after ACT chemo, it was so soft! I told my 8 year old daughter that I had heard sometimes it can come back as feathers, and she would pat around my head, laughing and inspecting, "No, momma, its just hair!" and I would tell her I thought I'd seen a feather in there, we had a lot of fun with that..
0 -
I was glad that when I took that look good feel great class they said remember your hair won't come in the same as you lost it. Some color their hair and the texture changes. I was like. Ok who are you? when it started to come in.
My son calls me pretty face because he knows my heart has been broken loosing my hair, among other things along the way. I have a wig that looks just like my old hair. But it feels like a job to wear it, and one bad wind and who knows what would happen. So I chose the caps. I am not able to loose the caps yet. It is just too cold on my neck and head. It's crazy!! I just said to my husband this week. Look honey I have a feather of hair sticking out of my cap. It really looked like a feather. One day at a time I guess. Thanks for the chuckle.
0 -
Micmel, thanks for sharing your experiences, and even your humor and inspirational comments! We are glad you found our community!
0 -
Thank you for making me feel welcome!
I shed tears when I read these wonderful women's stories and battles, I can't help it. Sounds like my life!
My mother always told me that she thinks I would cry at the opening of a Kmart! Sensitive I guess ! Have a wonderful day!
0 -
I'm always happy when you guys share your funny moments on this journey. I once was part of a cancer support center where people gathered all the time to share the sad and the happy and I miss that. Unfortunately, after almost two decades, it ended. But here you are...a circle of friends sharing your experience and I love it. I can even stay in my PJs for our visit!
I was asked once to share a bit on Cancer.net and I hope you will too. I tried to pull out the paragraph about hair loss to include here but was unsuccessful due to pathetic computer skills! Here's the whole thing with a hair loss story hidden inside!
http://www.cancer.net/blog/2014-02/keep-fun-funera...
I'm finishing up Round #5 (I think - too lazy to go and check!) of IBrance (+anastrozole) and am so pleased with the results. My oncologist called the response remarkable. While looking at the blood test results this week, I noticed a number that had dropped a lot (142 in October to 49 this week) so I was a bit alarmed. At this rate of decline, I'd be dead in no time! I was happy to learn it's a bone marker test called ALP and the drop was a very good thing. I didn't even know such a test existed. I bet you all did!
I'll return for a follow-up to the orthopedic cancer specialist on the 21st and am looking forward to more progress shown on his X-rays. I'm trying to schedule those appointments mid-way between PET/CTs so I can keep getting doses of good news!
I learned a bit of info on Oncology Business Review today that might interest those of you with pain from bone mets. A newly reported study shows that just one radiation treatment helped a good percentage of patients. My right femur lesion just causes discomfort, not what I'd call pain, so I haven't pursued radiation therapy. If it gets worse, I might consider it if I could just hit it once. We'll see.
One more thing that I'm not sure I've posted about here. In the Fall, I had discomfort (and sometimes, real pain) in my sacrum, pelvis and left leg (where I have mets). I asked to see a physical therapist for an evaluation and she discovered that my problems were not from the bone mets but were in the fascia. She treated me for a couple of months and all that discomfort went away. She called what she did Myofascial Therapy. I have Medicare + a supplement and it was covered 100%.
I pray that all of you have peaceful and happy week-ends. I say let's leave cancer here and pick it back up next week! Love to you all!
0 -
That is exactly what I am on. I hope and pray for equal results. Last time I saw onc he said I was stable. I will certainly take it. I can't believe you mentioned bone pain , because I just reached over and grabbed a lidocane patch to bandaid my aching annoying little un welcomed guests in my right pelvis side. I will ask about the radiation and physical therapy. Thanks so much for the suggestions. Have a wonderful weekend and so nice to meet you all.
0 -
micmel... I'll be praying that you too just have some trouble in your fascia! You could start treatment right now just by moving your thumb around and pressing it until you find an especially painful spot. Press as hard as you can until the pain starts to dissipate (Is that a word?!).
Stable is a very good place to be. First you stop this thing and then you turn it around. We'll celebrate it either way!
0 -
Cure-ious - Thanks for the video. It's good to know that Dr Hope Rugo thinks that PI3K inhibitors work. She seems to like the trial results for alpelisib and taselisib. I will keep my eye on those, as she would know. I am still trying to understand if you have to have the PI3K mutation or not for those drugs. It seems that some studies show they work either way.
Mediclisa - I am also interested in the way you have alternated between chemo and hormonal treatments. Seems like a great strategy for getting the most out of the meds we have, but not often practiced. Your perspective on how this works is of interest.
>Z<
0 -
Hi everyone, this thread really does move fast. I just wanted to thank everyone for the great conversation here and valuable info! After a small delay I will start Ibrance/letrozole next week 😬
Since the topic of herbs/supplements came up. I am starting to dive into my supplement research. but would like to see if anyone is willing to share supplements they take while on ibrance that they think are beneficial? I am interested Biotin, something to help joints, also I keep hearing about ashwaganda? Licorice root, and turmeric. Or has anyone found a good multivitamin that does the job? Don't worry I will ask my MO before taking anything to make sure it's "right" for me. Just looking for a jumping off point or additional ideas that I may not know about.
Apg - eiyiyi.... I am keeping my fingers crossed for you that it's a false positive. I am just reminded of something my Gyno said to me, She said the "uterus/cervix can act differently without ovaries and then you throw the cancer drugs at it. It just gets crabby! Hopefully it's just the treatment messing with your results
0 -
For the PI3K inhibitor Apelisib, from a journal report last month:
Alpelisib's maximum-tolerated dose (MTD) in combination with letrozole was 300 mg/d. Common drug-related adverse events included hyperglycemia, nausea, fatigue, diarrhea, and rash with dose-limiting toxicity occurring at 350 mg/d of alpelisib. The clinical benefit rate (lack of progression ≥6 months) was 35% (44% in patients with PIK3CA-mutated and 20% in PIK3CA wild-type tumors; 95% CI, 17%-56%), including five objective responses. Of eight patients remaining on treatment ≥12 months, six had tumors with a PIK3CA mutation. Among evaluable tumors, those with FGFR1/2 amplification and KRAS and TP53 mutations did not derive clinical benefit.
0 -
Cure-ious - tks. It obviously makes a difference whether you have the PI3K mutation. The variability may be due to the fact that the genetic tests are not perfect. It was interesting that Dr. Hugo is exploring the CTC tests for determining this mutation state.
Casun - Drop me a note if you want my supplement list and why I take each one. I am happy to share, with this caveat. I strongly believe in having a complementary ONCOLOGIST on your team. Complementary oncology requires more expertise and more experience than an average regular oncologist. The fact that complementary oncology sometimes uses herbs or "natural" substances doesn't necessarily make these treatments safe or simple or, of course, efficacious for your particular diagnosis. Some of the nastiest chemos are plant derivatives.
Doctors with FABNO certification are highly trained. The main thing you want is someone who has done nothing but oncology. For years. There are a several good ones that consult by skype, so you don't need a local complementary oncologist. But if you can find someone nearby that is best.
>Z<
0 -
For Taselisib PI3K inhibitor, the numbers are not yet published but some early results appeared in their ASCO meeting abstract (2016):
Results: 60 pts were enrolled; 17 had PIK3CA mutations, 27 had WT PIK3CA and 16 had unknown PIK3CA mutation status. Among pts with baseline measurable disease, confirmed response rates were: PIK3CA mutations (n = 12) 41.7%, WT (n = 21) 14.3%, unknown (n = 11) 9.1%; all confirmed responses were PRs. CBRs were: PIK3CA mutations 41.7%, WT 23.8%, unknown 27.3%. Common Grade ≥ 3 adverse events (AE) were colitis (13.3%), diarrhoea (11.7%), hyperglycaemia (6.7%), and pneumonia (5%). 18.3% of patients discontinued taselisib treatment due to an AE. More detailed safety and efficacy data will be presented. Conclusions: The combination of taselisib plus Faslodex had an acceptable side effect profile and clinical activity in pts with HER2-, HR+ advanced BC, with a numerically higher response and CBR in patients with PIK3CA mutations compared with WT pts. Taselisib is currently being tested with F in a randomized Phase III study (SANDPIPER, NCT02340221). Clinical trial information: NCT02340221
0 -
Also this discussion from last December about first and second line treatments, most would put A/A third, this was before considering the newer PI3K inhibitors:
http://www.onclive.com/peer-exchange/breast9-preci...
0 -
Cure-ious - Thanks for the links amd info.
0 -
I am trying to catch up with all the posts! You all amaze me with your knowledge. I could never learn all this info on my own. This thread has more info than I could ever get from my docs!!! I have posted on Facebook page for ibrance that I'm on about my pap and there were women who also said that the chemo that I've received along with being on the treatment I am now would cause an irregular pap. One also said they were told not to get a pap if you have had chemo in the last year or 2. It's only been 7 months for me so I probably should have asked my med onc about it before. I didn't really think about it though. I will talk to my dr Monday too and see what he suggests. I would prefer to wait and have a repeat pap later.
Regarding the pi3k, a woman I saw post on the Facebook page also was on tasalisib trial along with ibrance and a/I said in 8 weeks her tumor shrunk 30%. I will get my scan in 3 weeks so I'm praying I have the same response from gedatolisib. The one thing I wish was that mine was a pill but it is iv. The tasalisib is pill. It would be much more convenient. I will say all my back and hip pain I had has went away. Not sure if it is from losing weight (I've lost 32lbs since 11/22) doing yoga and exercise or from the tx! I'm hoping that the scan shows improvement! I have little mets as I was dx shortly after initial tx ended. How do they tell if bone mets are stable or shrinking
0 -
Apg - thanks for the update on your health and the info on the pap smear. you are doing so well!
Curious - thanks.
>Z<
0 -
I found this comparison of CDK 4/6 inhibitors from Cancer Commons very interesting. There are two in the pipeline ... ribociclib and abemaciclib ... in addition to Ibrance/palbociclib. Ribociclib is shaping up to be very similar to palbociclib, but I did not know that abemaciclib worked as a singlet therapy ... palbociclib did not work without an A/I.
Abemaciclib worked as a singlet therapy in patients who already exhausted hormonals. This makes me think it is stronger and maybe different enough than Ibrance that we have another line of treatment .... I thought of Robin, Shetland, LMWL, everyone in transition and how this might ... shake up the options down the line.
Here's the relevant paragraph, but the whole article is good.
Abemaciclib .... received a Breakthrough Therapy designation from the FDA in October 2016. This was based on results of the MONARCH 1 trial, in which abemacicilb showed promising activity when given on its own (as a single agent). In the MONARCH 1 trial, 42% of women experienced a clinical benefit (either tumor burden reduction or stable disease). The important point about this trial is that many women in the study had already received multiple lines of endocrine treatment, developed resistance to all of these treatments, and progressed. These women had exhausted all options for endocrine treatments, and many had already received chemotherapy. Abemaciclib therefore presents an entirely new treatment option as a single agent ...
>Z<
0 -
I put that in my notes. Thanks, Z.
0 -
I started faslodex and Ibrance Jan7th & 9th (took a little longer for the ibrance to be approved). On 1/7, my 27-29 tumor markers had risen to 42.1 up from 35.1 in November when we found the lymph node near the liver lightning up on the Pet scan. This was about a 10 point jump up even in November from where they had been living most of the previous 45 months. This past week on 2/7, those tumor markers had come down to 38.3 almost back in normal range (though it was "normal" when we initially found the progression).
I should be happy that it is trending the "right" way, correct!? Do people normally still see spikes up before it comes down usually on this combo? Or I thought I'd read that it takes a while for some people's tumor markers to show anything on this drug combo. What have you guys found? I've had no side effects other than being mildly neutropenic, but it is easier to handle the idea of all of those precautions and masks in public, etc.indefinitely if I at least now think that it really is doing the job it is supposed to do. Have others found that to be true, too? Being so new to this, I'm just curious about other's experiences. Thanks in advance!
0 -
nbnotes - my TM's spiked from 25 to 40 in the first month or two on this protocol and they have stayed there since (13 cycles so far). there is no evidence that low neutrophils make you more susceptible to infection or that avoiding bugs or life in general is necessary on this protocol. i live with two tweens who bring home bugs all the time. I haven't been getting sick even though they are sick often.
>Z<
0 -
Here are some active Abemaciclib trials. If you are interested in coupling abemaciclib with hormonal therapy or chemo, it is pretty easy to find a trial.
A Study of Abemaciclib (LY2835219) Plus Tamoxifen or Abemaciclib Alone in Women With Metastatic Breast Cancer (nextMONARCH 1)
Robin - that one has a site in nashville.
A Study of Abemaciclib (LY2835219) in Participants With Non-Small Cell Lung Cancer or Breast Cancer (PHase2)
That one is at UCSF (Hope Rugo lead) among other places.
They have a formal expanded access program for Abemaciclib which on the face of it seems to be just a US thing, but they have active trials internationally. For those of you who don't have access to palbociclib, you might try for access to abemaciclib. It is showing signs of being the better drug.
A Phase 1b Study of Abemaciclib in Combination With Therapies for Patients With Metastatic Breast Cancer
That trial combines abemaciclib with essentially doctors choice ... taxol, faslodex, letrozol.
There are a bunch of trials if you scroll to the bottom of this page, that combine abemaciclib with experimental immunotherapies (PD-1 inhibitors).
0 -
apg, the fact that your pain has diminished is huge! I had the same experience when the Ibrance/letrozole began working for me. The definitive test to measure shrinkage of mets is the PET scan. My MO waited about 21/2-3 months before ordering the scan. Sounds like your next scan is going be great.
Psyched about the apemaciclib! The more options the better!
Yeah for us!
love to each. MJH
0 -
Z- I would love your opinion on my future options. As I stated earlier in one of my original posts, I was previously on Letrazole alone when first diagnosed with bone mets and it kept me stable for 3 years at which time I had additional bone mets and started on Faslodex. I was stable on the Faslodex for 5 years before significant bone mets progression around Thanksgiving 2016. I am currently on Letrazole and Ibrance and am on round 3. So, with all that said, I'm wondering if the Abemaciclib would be the med for me if this treatment doesn't work or when it stops working?
Also wondering, if lower doses of Ibrance are just as effective, why not just start with a lower dose, say 100mg? The RN at my MO said virtually every patient of theirs starts out at 125mg but has to lowered because of SE. It makes no sense to me to start high if lower works just as well. Thoughts anyone?
0
