Ibrance (Palbociclib)
Comments
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I have a question about blood counts going down. Does it happen cumulatively, like it builds up in your system? Or do they go down every cycle and then up again on the week off? Just wondering because I had my onc appt Tues and he said "your counts didn't go down yet". That was day 28 of the first cycle and I started the new bottle the next day. Can I expect them to go down more each month? thanks, heidi
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HLB - in theory they go down over the 3 weeks you take the drug as the kinase inhibitor stops cells growing in your bone marrow. then you take a week off and your bone marrow recovers and the counts go back up. the main purpose of the break is to stop the accumulation of that particular side effect.
I am not having any drop in my neutrophils. many people don't. If you did not experience a drop in the first cycles, it's likely you won't. the side effects of ibrance seem to reduce with time, if anything. but everybody has a slightly different experience.
congrats on tolerating the drug. now if it works, you are golden.
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This may have been covered before, but I don't really want to dig through the entire message board. Is it realistic to assume that ibrance *could* wipe away some/all of your mets? I have 3 liver mets. My oncologist says yes it's possible, but I don't ever see anyone posting that it's happened. Are people seeing shrinkage? Stability, I know, is "good enough" and I agree with that, but psychologically I'd love to see those little "creeps" go away.
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momallthetime, Do not feel awkward at all about seeking 2nd or 3rd opinions. Most Onc's would encourage that. As Z says, the more complicated it gets the more eyes you need to help. I had a 2nd yesterday, which my Onc suggested by the way, and it just helps to clarify anything you still have questions about. For me, this second lady just explains a little differently, so between the 2 it just seems to sink in better. Most things she concurred with my regular Onc, which was reassuring. It gives me a little more peace of mind to have 2 people to bounce things off of.
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Eelder, I had a pet scan 2 weeks ago after 14 cycles of Ibrance. My mets are bone only but my scan listed numerous sites with the previous suv number and then stated all resolved. Also stated no abnormal uptake to suggest active Cancer, considered healed. So yes I believe it can happen, my mets were in almost every bone
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artist, you were in my thoughts and I'm so glad that yesterday's second opinion was well worth your trip! Having more peace of mind is great! Try to relax and have a good weekend
Lynnwood, such fantastic news!! I will definitely pass your wonderful results on to my Mom who just restarted Ibrance again yesterday (at the lowered 100mg. dose). She will be very happy to hear that! Congratulations!
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Zarovka, thanks, that is good to know! Yes, I am thrilled to be tolerating this drug and feel even better than I have for about 3 years! More energy and just happier. I just got my ca 27-29 and it is down one point. However the last one was April and based on the trend it would probably have been up about 60 points by now without treatment so I'm pretty happy with that too after only one month on it. I just hope it's lasts! taking it with faslodex.
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Lynwood! I have chills! Thrilled, elated, overjoyed for you. There is hope... lots of it. Thank you and good for you
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eelder, there is about to be a trial at City of Hope with Ibrance/letroze or faslodex paired with Keytruda (a immunotherapy). Not sure when it is set to begin, but my ONC is encouraging me to enroll. Don't know yetif I will, but I'll keep everyone posted if I do. I think you can find info on it thru clinical trials.gov.
Stefanie
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To clarify, the immunotherapy drug that was requested for her was approved. She is not approved to any specific trial. This is just this doc hunch that bcs he saw the BRCA mutation in the tumor he believes that Lynparza (olaparib) could do some good, with Ibr/Letrozole, with the Immunotherapy.
So sorry if there was a misunderstanding, there is no name for this "trial". It's just unusual he said to get approval quickly for Immunotherapy. I don't even know the specific name yet, will find out on Monday. She is not starting on it yet.
Thank you all for the good wishes. Kinda of anxious, still waiting on calls for consultation. Mentioned to me also was someone very involved in tumor mutation etc... at Robert Wood Johnson in NJ, need to pick his brain. I was told by accomplished Onco doc, not a breast cancer specialist, that I need to get someone that will think out of the box. Ever heard of that Institution?
Lynwood so happy for you.
Artist i could "hear" from your post that you are more comfortable now, good for you.
eelder is there any talk about radiating those buggers? I was wondering the same for Dani, the worst is she got 2 spots while on Ibrance, so...
Zark Faith Carol thank you so much.
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eelder - at least 2 or 3 people posting here have gone to NED on ibrance/letrozol over time, probably more. even letrozol alone will shrink tumors.
i keep reminding myself that stable and NED have the same outcome; however I want to be NED to. At least I want to get rid of the liver mets. If the liver mets are gone my oncs will consider surgery and/or radiation on the primary tumor in my breast. since i was diagnosed de novo stage IV, i still have that bad boy.
all my mets and my primary tumor decreased in volume by more than 50% after 2 cycles of letrozol and ibrance. some of the smallest liver mets appeared to my untrained eye to be gone. the radiologist is only measuring the 2 largest lesions but i had 5-6 in my baseline scan. now i can only find 3 in the scans. the reduction happened so fast (<2 months) that i believe that was the result of my aggressive complementary protocol more than the ibrance/letrozol protocol. the mean time to response for ibrance/letrozol is 4 months. ibrance is slow and is known to produce results 6-7 months out. my onc has many patients on ibrance and had never seen a response that strong that fast. but i did read a post from one person on this forum who had a response like mine in 2 months. so who knows.
if my scan in july shows further reduction in the size of my tumors, i am going to feel like ibrance/letrozol almost certainly contributed. many researchers believe that cancer responds best to cocktails of drugs that each attack the cancer in a different way. this is one of the many reasons why my protocol combines the standard of care with complementary therapies. if i have a good scan in july i'll gladly give them all credit and there is some science to back me up on that.
stefajoy - thanks for pointing out the trial. Pemrolizumab is keytruda. this study is for patients been undergoing treatment with letrozole and palbociclib for >= 6 months and have tumors that have ceased to decrease. this is another answer to eelder. if you are stable on letrozole and palobiclib for at least 6 months, you can join this trial and add this immunotherapy drug to see if it will start decreasing the size of the tumors again. many people on this forum are stable and may be interested.
Phase II Study of the Addition of MK-3475 (Pembrolizumab) to Letrozole and Palbociclib in Patients With Metastatic Estrogen Receptor Positive Breast Cancer Who Have Stable Disease But Are Not Responding to Letrozole and Palbociclib
>Z<
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Lynwood- I am thrilled for you. That's just wonderful
Artist-so happy you're feeling more comfortable after getting another opinion. It really does help to have someone else to bounce things off of. I tend to call my BS who has become a friend. After discussing any changes with her, I always feel so much better!
Wonderful weekend to all,
Babs
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momallthetime - is the immunotherapy drug keytruda (pemobrolizumab) by any chance?
here is a good summary of the main immunotherapy breast cancer trials.
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I've just returned from getting my scan results. My L3 in my spine that looked suspicious in November is now looking downright guilty! My new onc, who I really don't like or completely trust, was very nice to me today. Maybe that's because I complained about him and then got a survey in the mail and reamed him. HA. He decided to add Ibrance to my Femara. I've done well on Femara for 4 years, so I am hoping to do even better with Ibrance added. Plus may be having radiation to my spine. It's been hurting a while, just not showing up on scans.
The nurse told me when they get the Ibrance in, they will call me for a training session that would last an hour. To take a pill? Really? Did anyone else have that?
I'm not too very upset to hear that I have a little progression. I knew it was there, just was playing hide and seek with the scans.
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Great news re: Keytruda. This is the treatment that has done WONDERS for people with other cancers. Gosh I'm excited!
I was diagnosed in March 2016 Stage 2. Then, one week later in April I was Stage IV due to the pet scan showing 3 liver mets. Two of them are a little over 1 cm and one of them is about 2 cm. So, not "large" at all (or that's what they tell me). I too still have the breast tumors (two of them, both relatively small). What I've been told is I can have surgery to remove the breast tumors once I show stability. As for the liver spots I've been told we want to treat the BC first (which is what we're doing) and then liver ablation is an option IF they shrink a lot and are just stubborn about going away. That said, each of my 3 spots are on separate lobes and for some reason (I'm not a doc) they wouldn't want to operate/do ablation on separate lobes?? SO.... I was told if two go away and one remains THEN we could do ablation. I liked hearing this because while I believe ibrance/letrozole should work, I am worried it won't wipe away the spots. I wanted to know we had other ways of attacking this. I'm sure every surgeon/onc has a slightly different view on how to attack this, but because I have limited mets (possibly meeting the definition of oligomestasis) I'd like to think we could be somewhat aggressive about this. I want to get to NED.
Having said all this, a woman in my town was diagnosed with Stage IV BC 18 years ago... also three mets to her liver. Guess what? She's still here and the mets are too! Not growing, stable - she gets a scan every year now. SO.... you can imagine why I choose to have hope. They didn't have nearly the tools 18 years ago that they do now. I know not everyone will respond this way, but the point is, it's possible. And I think this happens more and more now.
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Z... question for you... what is your complementary protocol? Your response in those first two months is AMAZING. Wow-wow! Good for you.
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Mzmerz - I am sorry that your L3 evolved from suspicious to guilty but it sounds manageable. A one hour training session for Ibrance is ridiculous. You'll do far better spending that time reading this thread. Ibrance is an interesting option. I will say, however, that Xgeva or Zometa are the go to treatments for bone mets. They can be prescribed with Ibrance or separately. Whenever you are changing treatments its good to get a second opinion. However, since you don't have a great feeling about your current oncologist, it seems even more important to get another point of view here.
Eelder - It is so cool there is a keytruda trial for people with ERPR+ BC who are on Ibrance, eh? Hopefully there will be a phase III if and when we need it.
I'll gladly PM you with my regime. That said I think the complementary doctor is more important than the specific regime. I believe there are several complementary protocols that are working. The key is the appropriate medical oversight. There are many competent doctors who have jumped the fence and provide effective complements to the standard of care.
Can you fill out your treatment and diagnosis history in your profile?
>Z<
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Eelder
January I had multiple new liver lesions. Took Ibrance for 3 weeks at 125 and 4 weeks at 100. Scanned. Liver lesions not seen.
I had bmx and whole ball of wax first. Bones and liver showed up two years later. I'm over the moon with my results since I didn't take a full 12 weeks.
The fatigue sucks. The other SEs come and go.
Good luck. That 18 years is awesome. My children would be graduating from college then. We can all hope.
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Hello ladies...
I hope all is well. Just checking in and reading up on how everyone is doing. I celebrated 1 year on Ibrance on Thursday. I am tolerating it pretty well and have been NED since my January scan. MO moved me from every 3 months to 6 month scan, so the next scan will be in September. My week off has been the worst for me. Super tired and had a cold/allergies that kicked my butt! I am still working full time. It keeps my mind occupied. I am looking forward to traveling!
Monika
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Hello, hope everyone is enjoying summer as much as I am. I guess having cancer again makes me appreciate the things I've been taking for granted. I went to a class on hypnotism today, sponsored by my cancer center. I need to learn how to relax and let go of my anxieties and not be such a control freak.:).
There was a woman there who I have seen at my church but didn't really know. I had heard her breast cancer had returned and we talked a bit. She has been on Ibrance for 11 months now. When I asked her if she was also taking letrozole, she said she had been switched to aromasin (sp?) because of all her joint pain caused by the letrozole. I am only dealing with plantar facitis and some knee pain, both of which I had before the return of my cancer. So, this might be an answer for some of you dealing with bad joint pain. I think I have lots of other side effects from the let. such as insomnia, shortness of breath, hair loss, dry mouth and sundry other things. I think these are from the Letrozole because they don't go away on my week off.
So, I'm wondering, those of you who are also on aromasin, do you think the SEs are better when you went off the letrozole if that's what you did?
Faith0 -
Thank you, LovesMaltes!
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Yah Lynnwood! Good news like that must have had you flying high!
Thanks hummingbird! Yes, this lady just has a very calming and assuring manner so I walked out feeling more relaxed. After that we went out to lunch and looking at cars! Mine is pretty worn out so I am pretty excited to jump into something fresh. Haven't found it yet but we will. Today I had a hug yard sale and unloaded a TON of clutter and made $600 dollars!!! It was awesome but I am whooped.
Stephajoy, I will be interested to read up on that trial and immunotherapy in general as both my Onc's seem to think we are a LONG way out for BC. I hope they are completely wrong.
Thanks Mom! I do feel better.
Thanks for the link Z. My diagnosis is very similar to yours and hope that my Onc will also discuss down the road, surgery to get the primary out.
Sorry about the progression msmerz. No, not the end of the world but still a disappointment we all know.....I was told to go in for a training too and it actually took 10 minutes as I had read up on it ahead of time and told her so. Hope they can help make your spine feel better. Wish I could get 4 years out of anything I've been on so far...
eelder, interesting about ablation being a option if you lose two of those buggers. Hope than can happen for you and I. boy, 18 years is something to daydream about....
Hi Monika, haven't seen you for awhile. Keep on going there!
Happy weekend!
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I do have Xgeva every 3 months. I'd been having it every month for 2 years, then just changed to every 3 months.
This onc, the reason I don't like him so much is that he is quite full of himself. Apparently the nurses are not allowed to speak to the patients in his presence. I wondered why they were acting so weird and not them selves when I had my breast exams (which I think having now is a little stupid). I had complained about him to the nurse and she got her supervisor and she asked me "what did he do now"...and he's only been there 6 weeks. They have lost a lot of patients due to the onc change, and his rudeness. He's on probation with me. As long as he is civil and not being a jerk I will see him. My other options are to go see the other onc I fired for lying to me, or driving at least 45 minutes or more away from me. I actually did want to add Ibrance, you know, to be part of the "in crowd" lol. So he at least did what I thought was a good change. Hopefully it works!
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mzmerz as someone here said, these so called doctors should be patients for one week, one day even and I think they would change real fast.
monika so happy for you.(always loved that name!)
I do believe it's Keytruda. So I think he will put her on Lynparza(already ordered, even thou I told him to wait, bcs I wantd to hear from 2nd opinion first), Ibr/Letr, and Herceptin! I gues it's his own trial. But he did not say a/t regarding the large lesion in the skull, so I have to work on that. And nothing about the liver. I did ask a PA from an Onco lung specialtist, she told me they don't always do liver biopsies. So the question is in Dani's case, things change so fast, and are so unresponsive, if that would be advisable. I am so uncomfortable in having liver mets just seat there. They have much temerity, and i just don't want to see it go crazy, and then they say oh it's too many we can't treat all of it.
I reread Dr. Nagourney's book Outliving Cancer. He does not take Insurance. But he takes the biopsy and tries to see which cells die with with tx. He believes that everyone else was looking at cancer cells the wrong way, he looks at how and what makes them die, instead of focusing on what makes them grow.
eelder, you know I am just a lay person, but this Immunotherapy thing I think it's the future. Again, just reread May Elizabeth Williams' book - A series of catastrophes and miracles...so she had melanoma, was one of the first ones to try Immunotherapy, and it saved her life, now they are aiming to treat many cancers with that. If it doesn't have too bad SE's I think I am telling doc we will go for it.
But, I am still waiting on at least one Doc in a large Cancer Center to respond, she was looking the documentation over. And the other one we have an appointment next wk.
Will keep everyone posted.
Warm Hugs...
P.S. Why not get rid of at least the lumps in the breast and deal with the liver separately? And btw could they not be of 2 dif mutations? I thought Guardant was a great idea, bcs it was just a blood sample, but now, I think not. Bcs there is a lot of doubt as what mutation is really in the cells, bcs it was not taken from actual tumors....
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Hi, Faith~
My MIL also has mets in her lungs- both. She has mets in her sternum, manubrium, spine and skull (all small). There is lymph-node involvement, too. She hopes to start Ibrance this week- getting approval from Medicare was a nightmare!
Can we expect shrinkage in the lungs using Ibrance? I keep reading positive feedback about Ibrance and bone mets, but I haven't read thoughts on lung mets. I got the impression from her last appointment that they are more concerned about her lungs than bones.
I'm so appreciative of any feedback or perspective.
Warmly,
GracieGirl
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Graciegirl... I haven't really read/heard anything about ibrance being more effective for bones vs. lung/liver/brain. My onc told me something interesting. I am Luminal B. Luminal A tends to grow very slow and will often appear on the bones. Luminal B however can "misbehave" and is more likely to metastasize. This explains why despite having small masses in my breast (Stage 2), I was suddenly Stage IV after a pet scan (thank goodness we did that). Anyways, she told me that she wouldn't have given me ibrance if I were Luminal A. She said Luminal A's often don't respond quite as well and do fine on just hormone blockers (Femara, for example). Because I am Luminal B she said I am more likely to respond to ibrance b/c these types respond better to chemo. I have 3 mets on my liver (two of them a little over 1 cm and one of them a little over 2 cm). I haven't had my first scan yet so I have NO clue if I am responding. But I think this info is interesting. One can conclude that ibrance can do just as good of a job on visceral mets as bone mets, especially since Luminal B tends to have visceral mets and my oncologist claims B's respond better to chemo. HER OPINION. NOT GOSPEL. Something to think about....
This all said, it sounds as though there are some on here with NED and had bone mets so gosh - sounds like we've all got a good chance to have good results here.
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eelder~
Thank you so much for sharing your experience and insight. I understand each person responds differently, and maybe I'm getting ahead of myself bc my MIL hasn't started the drug yet. I've read every article about Ibrance research I can get my hands on.
It's been such a tumultuous diagnostic experience for her (first diagnosed with lung cancer), and getting info has been challenging (three different oncologist and two surgeons for biopsies). We're just so eager for the rest of her treatment to start (Letrozole started two weeks ago and waiting for Xgeva and Ibrance) and hopefully relief of symptoms to start.
Again, I'm so thankful for your response. Your words and those of others give my family such support. We're so appreciative.
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gracieg what I could advise you is for you to make sure your MIL gave you and your husband Power of Attorney, make sure it's notorized, medical for sure and financial you will decide. Bcs if someone at an office or Hospital is not in a good mood, they could make your life miserable, asking who are you to make decisions, or how do we know she would like you to speak on her behalf. If you don't have it, I'd say do it yesterday! And a health proxy. Extremely important. If you can't handle the DNR business, it's hard for ppl to conceive this things when they are well, and she does not have to, but at least that you are her Health Proxy. And make copies.
And make sure to have all blood tests, and ask for copies of scan reports and the actual CD's. I just find it easier to have it all as we go along, so if you ever need another opinion etc...you have at your fingertips. And keep tab of what treatment she is having when.
She is sure lucky to have you guys.
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Hi graciegirl,
I'm happy to tell you I have had a very good response to the tumor in my lung. After only three rounds, there was quite a reduction in the size of the tumor and the lymph nodes have almost disappeared also. I was coughing a lot which is what led to the chest X-Ray that found the tumor in the top lobe of my left lung and the cough was also gone after a few rounds of Ibrance/letrozole. So, I would thnk there is every reason that your MIL would also have good response to these drugs.
I'm so sorry to hear she had trouble getting approval from Medicare. Does she have an HMO Medicare plan or does she have Medicare with a supplement such as BC/BS.? That's what I have and while it's expensive, it turns out to have been a good decision for us. I hope the specialty pharmacy getting the drugs for her has also gotten her financial help from a grant through the PAN Foundation or something similar.
I'll pray she can get started on the drugs this week and also has a good response and for all of you to have the strength to deal with everything that you're going through. Things do get easier as time goes on, at least that's been my experience. The side effects will lessen and she will gain some strength as the drugs do their job. As others have said, she is very lucky to have you to lean on.
Faith (in the future)0 -
Monika - congratulations on your 1 year anniversary. May we all get to NED in 6 months.
Zills! you were the 2 cycle ibrance miracle. how awesome. may we both see our kids graduate from college and more...
Faith! another fast response to Ibrance.
So that's 3 fast and strong responses to ibrance, or 4 including myself, among the folks on this thread.
I'm curious if there are any more out there ...
>Z<
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