Ibrance (Palbociclib)
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Dancing, my liver enzymes went up every blood test on this combo so she took me off, and now they are slowly going down. She thinks it is the Letrozole but not positive. I was also getting a pounding heart and shortness of breath. I did feel twinges in my liver area but a lot of people say that is the tumors shrinking or dying off and I did have a good scan the next time. Unfortunately it was messing with my enzymes.
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Dancing Veggie- I only have one liver met and have not had pain with it, sorry you are having trouble with unexplained pain. As for my Cold, I decided to start the next cycle which coincided with a lessening of my cold symptoms and just had a cough to deal with. I reduced the dosage this cycle to 100 mg and so far I think I'm doing better this cycle (#5). Next week will really be the test for me. For those of you on letrozole I used omega3 to help lessen my arthritis in my thumbs (at least 3 pills). I did take letrozole for 14 years and eventually all joint pain went away.
I just finished reading some summaries from the San Antonio Breast Symposium and read interesting news about Ibrance. They just finished a preliminary study using it with Taxol; it's considered a complementary therapy. They alternated daily for a few days 75mg of Ibrance with once a week taxol, so far good results. They are also looking at a newly developed CDK4/6 inhibitor (that is the focus of Ibrance) called ribociclib, from Novartis. More drug companies getting in the mix now. The more studies there are, the more information we will have that will help us answer our questions while taking Ibrance. The second article dealt with the recognition that there is resistance to the drug that develops in some people and they are identifying specific tumor cells that become resistant. They will then start looking at drugs to prevent this resistance. Progress. I like reading about it.
Enjoy the holiday spirit around you
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Thanks for the info, Artist! My liver enzymes are climbing as well, and the pain while on the Ibrance made me seek the help of a chiropractor. I did experience that pounding heart sensation, too.
Anyone out there have any hand-and-foot syndrome? The skin on my fingers thickens and peels like when I was on Xeloda.
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DancingVeggie - I have "innumerable" liver mets diagnosed almost exactly one year ago. I had severe liver pain which responded well to Faslodex for about 11 months before I had to move on to something else. I've just finished my 2nd cycle of Ibrance/Faslodex and haven't had liver pain through that cycle or my week off. I've had a few twinges that I have attributed more to gas than liver. I know, tmi
My CA 27-29 tumor markers have dropped from 463 to 265 and my white cell counts have returned to near normal after a drop during the first cycle of Ibrance. Liver enzymes are also a little low but much better than they have been. I actually have been feeling much better.It seems like almost everyone responds differently but maybe you should ask you doctor about the Faslodex combination. Hope you come up with something that is helpful because the liver pain is no fun. Best wishes to all.
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So happy for you Lynnwood! that is a very nice christmas gift.
I wish all the ibrance ladies a mery christmas.
Cheers
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I have a question for those experiencing the pounding heart symptom. Is your heart rate actually elevated, and are you on some type of high blood pressure medicine? I experienced this for a couple of days, but it was when my pcp changed by high blood pressure medicine. Went back to my old one (a different type)
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I have a question for those experiencing the pounding heart symptom. Is your heart rate actually elevated, and are you on some type of high blood pressure medicine? I experienced this for a couple of days, but it was when my pcp changed by high blood pressure medicine. Went back to my old one (a different type)
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It has been four months since I read or posted on this thread. It was just so discouraging to hear over and over how "easy" this protocol was. This protocol was not easy at all. Between the skin disintegrating on my feet and fingers, the rectal and vaginal sores, the unreliable bowel movements, moving from constipation to endless diarrhea, the anxiety spikes and mood alterations, and the randomness of how I might feel at at a specific moment of the cycle, the anemia which made fatigue an ever present force, this drug was simply not easy.
It also didn't work. My tumor load has quintupled. It has been almost a month since I took my last Ibrance pill. An unopened bottle sits on my desk.
It is time to move onto chemo; my doctor is convinced that I am no longer a candidate for any of the remaining anti-hormonals. On Tuesday, we will decide if we are selecting the BIG GUN Taxol, or the small gun Xeloda.
I wish all of you the best and hope that Ibrance keeps you stable, or even NED, for a long, long time.
*susan*
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Hi Susan
Sorry Ibrance didn't work for you and that you had a hard time with it. Ibrance/Letrozole also failed me. I'm now in a clinical study at MSKCC for GDC 0810. My next set of scans will be on 12/28 It seems we're always nervous and waiting to have a test or get the results of some test. It's just our new normal-oh well!
Babs
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Susan, Sorry Ibrance did not work or really the anti-hormonals didn't work since Ibrance is just "complementary" to whatever you are taking. That said, I noticed they are using Ibrance with Taxol now in Studies, not for the public yet, so you may still use the unopened bottle sometime in the distant future with some other therapy.
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Hi Susan - I'm so sorry that Ibrance did not provide improvement and was so hard on your body. It's such a mystery that our side effects are across the board, and in your case were especially difficult. I'm sure after having 4 years of NED on Faslodex this was a disappointment. I hope Xeloda or Taxol are a lot more effective for you. Sending hugs your way
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Yes, Susan, hugs to you. I'm so sorry this treatment has been difficult and not successful. Here's hoping for a long period of feeling better!!
My first 3 months were successful and relatively easy (except for fatigue). But, after the last 3 months, my tumor markers are up slightly. Had my PET scan last Monday. Up takes are slightly up too. I get an MRI Monday. My radiation onc (had rads in left hip because of sudden extreme pain a month ago) believes I will not be pulled off Ibrance because the change was not large. After the MRI my MO will decide. That conversation will happen Christmas Eve.
The ROs comments were helpful in that I didn't realize treatment is NOT an off-on switch. All our treatments gradually become less effective. And we don't want to switch too quickly. Just hadn't thought of that.
Hope everyone has holidays filled with love!!0 -
Oh, Kaption - The timing of some of our appointments is challenging, isn't it? Your comments about timing of treatment changes are helpful and interesting. I hadn't thought about it that way. Wishing you well with your appointments.
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Hi Susan,
I'm so sorry that Ibrance was a disappointment, and a difficult one at that. I'm only halfway through my second cycle, so who knows what fun side effects await me?! I've taken Xeloda and it's much easier to pop the pills vs. the dreaded infusions, but it's not without it's own nasty side effects. It packs a punch though in destroying cancer, so it may be a good option for you. Whatever you and your oncologist decide, I hope it knocks that cancer out and gets you back to NED!
Rose.
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Oh, Susan -- it sounds like you had one of the absolute worst experiences with Ibrance. And then not to have it even work for you! How disappointing and frustrating! I hope your body gets some time to recover -- especially from the anemia -- before you start whatever you and your onc decide is next. And I hope that whatever it is will be much easier on you and get those TMs going down again! (((Hugs))) Deanna
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Susan,
I can only echo what others have already said. I am so sorry you had such a dismal experience with this protocol! I remember you telling me when I got Ibrance approved that it might be a case of "be careful what you wish for" but I had no idea what a difficult experience it was for you. I hope whichever new tx you and your mo choose will be better for you, both in terms of QOL and results.
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Thanks for the info, we all love to hear promising news! Kaption, my blood pressure is fine, actually in a low range. The pounding heart and "elephant on my chest" feeling was usually when I did any exertion. 5 months ago I was riding my bike 15 miles a day. It is better now that I have been off of the Letrozole/Femara combo for almost 4 weeks and curiously my tumor markers still went down again. I guess because it stays in your body so long. You really have to go on Christmas Eve??? Susan, that is such a bummer, I'm so sorry this did not work for you. We will be thinking positive thoughts about you as you start your next treatment, and hope it kicks cancers butt! Babs, the new normal is making me a basket case......Kaption, I am nervous as to how quickly my MO is pulling me off this regimen when I feel like we may be able to adjust dosage or change the Letrozole to Femara or something a little less drastic as it was working to shrink the tunors and my markers went way down. Unfortunately I got elevated liver enzymes, pounding heart and shortness of breath. Just wonder if full doses of both was too much?
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Artist - Assuming your liver enzymes drop back, I think it would be worth at least asking your onc about possibility of trying the lowest dose for a bit and see how it goes. I had actually been wondering if that might be a possibility for you -- especially if it is being effective for you. I'm on the lowest dose now, and the reduction in side effects for me was noticeable. I don't know all your specifics of course, and maybe there's a good reason not to try the lower dose, but maybe worth asking at your next appt. Good luck.
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Thanks Moissy, I don't know why but I have this intuitional feeling that this might be something to try. As I have said before my Onc seems to get a little annoyed when I bring up any suggestions or research I have done. I am going to still ask her about this idea but I am also going to make an appointment with another Onc for another opinion, just have someone else to bounce some ideas off. After a few misinformational statements I am not feeling super confident that my MO is up on all the latest in BC treatments....
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Artist, I think getting that second opinion is a good idea. My MO welcomes my thoughts and even asks me what I've been reading on this discussion board.
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Kaption, yes I plan to do that this week. We have a pretty major cancer center about a half hour from my house that is affiliated with another very highly rated medical center in SF. I was just soooo upset after the last appt because of her attitude. My anxiety would drop so much if I had one like yours. Thanks everyone for caring, it has been so incredibly helpful!
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Artists
Since this journey we're on is so difficult you should def seek another opinion. You really need to be comfortable with your MO. Seeing him/her should be a safe haven for you!!!
Bab
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Susan- so sorry to hear about your results. Will you be starting right away, or will you wait until after the holidays to begin your new treatment?
Femara/Ibrance didn't work for me, either, although I didn't suffer the side effects that you did. Also, my onc hasn't given up on hormonals in the future. (He has more faith in them than I do, at this point. )
Still on Xeloda. Praying that it's working. Tumor markers have stabilized, and they were going up with the Let/Ibrance treatment, so I'm optimistic. I had to lower my dose a bit, to four pills a day, in order to make the HFS tolerable. Scan in late January will confirm if the liver tumors have stabilized, as well.
Good luck with your decision. I chose Xeloda because it was oral and my onc said the side effects were more tolerable than the infusion meds. I'm sure it's just a matter of time before I get to see if he's right. Cancer sucks.
Sandi
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Susan,
I've been thinking about you and wondering why you haven't been posting in this forum. I hope your next course of treatment is effective for you and brings you stability. I do not have many SE's except persistent fatigue. I thought this would ease up but not as yet. I long for my old energy to return as I have to push myself for ordinary tasks.
Kathy
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Sandilee. I have been on xeloda for 2 years. It has worked soooo good. I had mets in my liver, and they are gone. I had them in my bones, well, still do, but they have shrunk so much. I had a PET scan last week, and suddenly, after 2 years, I have a new met. Now the dr suggested Ibrance, and I am upset. The only side affect I have with xeloda is the hand and foot syndrome. Good luck
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I have been on Xeloda for 2 years now. PET scan results today show a new bone MET, and 2 of the other 3 bone METS have grown a tiny bit. Dr suggested we may switch to Ibrance. I am afraid it wont work. In the 2 years on xeloda, it has shrunk my bone mets significantly, and got rid of my liver mets completely. I hate the hand/foot syndrome, but thats the only side affect I have. I tried tamoxifen, and it worked about a year, then to xeloda for a few months, to jump start the femara, but then the femara didnt work, then to faslodex for a few months, and it didnt work. Not working because tumor markers kept going up. After 2 years on xeloda, the tumor markers are going up a tiny bit, but the scans show growth in the mets. Dr says ibrance with arimidex. Assuming because the femara didnt work. I am scared to start on ibrance thinking it wont work. I just spent a couple hours reading all the posts on ibrance. It still scares me to start it, and all the shrinking the xeloda did, will be worthless. I feel like all the shrinking will start growing. My dr looks at my tumor marker numbers, and if they start going up, he stops the meds, and switches me. Has anyone gone through all these meds to find anything to work?
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Beth, if you do not have confidence in your onc's recommendation, perhaps a second and even a third opinion would be helpful at this point. As you probably know, not all oncs think alike, but you do need to have confidence in yours. As far as I know, Ibrance+Arimidex has never been through a trial, so it sounds like your onc is taking some creative license with Ibrance, which may or may not be a good thing in your situation. I also think we sometimes have instincts about what will or won't work for us, but going into something with a fearful or negative mindset (which it sounds like you have) may not be helpful. So I think if I were in your situation, I would absolutely get another opinion, just to see what someone else can add to the picture. Just my two cents worth. (((Hugs))) Deanna
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beth, it's great that you had such success with Xeloda. I understand your concerns about a hormonal + Ibrance if hormonals haven't worked in the past. I kind of feel the same way. I think my onc will want to try me on Tamoxifen when Xeloda fails. But I did have really good luck with Faslodex, so I think he's thinking that hormonals may still be a viable option. He doesn't stop a treatment based on tumor markers, though. He will only change if a scan shows progression.
At least our oncs aren't giving up on us! But I agree with Deanna that if you are uncomfortable with your onc's suggestions, maybe it would be a good idea to get a second opinion. You have to feel good about your treatment. Heaven knows they aren't easy to deal with, and if you don't think they will help, it would be even harder. Good luck!
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Trial for Ibrance in DC for HER2- or Her2+ Metastatic Breast Cancer
Sisters of BC.org, I wanted to tell you about the trial I am on, since it is a way for Herceptin positive people to get Ibrance/Palbociclib. It is also open to Herceptin negative. (Also includes lung cancer and bowel cancer patients.)
The trial is at Georgetown in DC. It involves getting Ibrance plus 5FU, an old chemo with fewer side effects than regular chemo. For example, I have had no hair loss or diarrhea.
I have Stage 4. Right before the trial, I thought I was nearing the end because my cancer was growing so fast. I had bumps of cancer that I could see in the mirror near my clavicle and mets to lymph nodes and bones. I am Her2+ and ER+. After 8 months on the trial, the bumps have disappeared, and the bone mets shrank significantly. I am stable now.
I feel good most of the time. Ibrance -- no side effects. The chemo comes in a pump I have to wear at home for 48 hours every two weeks. Slightly inconvenient, but after getting it a few times, I realized I can walk, run, even bike with the pump on! Chemo side effects are low appetite, tiredness, mouth sores, hot spots on fingers and feet ( mild hand and foot syndrome). Most days I can do daily activities, and even on very tired days (about 1 a month) I can get out of bed and do household tasks.
You have to qualify for the trial through a genetic test, and they will do 3 biopsies as part of the research if you get in the trial. You can get general anesthesia for the biopsies if you want -- I just did local.
It is a stage 1 trial but both the 5FU and Ibrance are proven medicines -- they are testing the combination.
Here is the info from Georgetown:
Your trial falls under NCT01522989 which is called "PD-0332991, 5-FU, and Oxaliplatin for Advanced Solid Tumor Malignancies." We are still recruiting patients. More information can be found here: https://clinicaltrials.gov/ct2/show/NCT01522989. Interested parties should make an appointment in the Developmental Therapeutics clinic by calling 202-444-2223, chose option #2 to schedule an appointment with a provider, and option #6 for the Developmental Therapeutics clinic
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Artistatheart - Definitely get a second opinion and change MOs if you feel like your current one isn't open to input. I did that and have never regretted it. Even switched to a different doctor in the same clinic and I think they are fairly used to that. My MO suggested Xeloda after Faslodex alone failed but after reading about the side effects and learning about Ibrance on here, we discussed it and he was very comfortable with the Ibrance. Best of luck to you.
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