Ibrance (Palbociclib)
Comments
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Thank you all for joining in my celebration! I’m praying for us all to be NED soon !
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Ginny - woo hoo! So excited for you. 😊
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great news Ginny
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Yep Ginny great news.... time to enjoy the festive season and just ‘park’ the thing for a wee while
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Hi All, just wanted to share my scans result. I'm not sure if I should take this as NED from neck down? I'm 10 months into Ibrance at 75mg.I don't post much, but still reading. Sorry for those with progression & congrats to those with good scans result
Hugs!!
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Ginny02 - congratulations, wonderful news. I'm on cyle 3, and hoping for the same. The oncologist is very optimistic. Have not heard yet from insurance for prior approval for PET. This is the 3rd time for me, twice on the left, and now on the right. The oncologist thinks each episode is a "new cancer" rather than recurrence, but when pressed, admits that there is no way of knowing.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. Trigger finger seemed to be getting better, but now 4/2019 seems worse, is it the break from added turmeric to meals?
Swelling in R-arm, opposite side from where lymph nodes removed. Noticed 6/18/2019. Could have been swelling earlier but wearing long sleeves. Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. Started seeing lymphatic therapist 7/2/2019. Stopped seeing lymphatic therapist early October. She did not think it would help until tumor removed/chemo'd/radiated into oblivion.
8/2019 CT, Breast/chest , neck/thyroid ultra sound
9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for)
9/29/2019 PET scan, no indication of spread. Arimidex and Ibrance prescribed to shrink tumor prior to surgery.
10/2019 – Stopped Tamoxifen. Started Arimidex and Ibrance. Brand name Arimidex so far does not seem to have the SEs that generics did, but stiff/trigger finger on left middle finger returned.
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Congrats to all those who are entering their 4th year of the Ibrance dance. I'm starting cycle 37. Don't post much. But read often. You are all so supportive, so thanks from one of the quieter ones. Would post more but my problems seem to be related to arthritis and old age.
I love you all
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42young, I'm not sure what the comments about the lung mean, but it says no evidence of disease. Congrats and enjoy the holidays!
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pinkpunk, # 37, Congrats that is great. I hope I\L works a long time for me also. The SE s don't seem too bad compared to other treatments.
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Thanks Simone, that lung nodule has been there since the start & the size (3mm) never changed, so they think it's not cancer.
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I drink at least one large lemon-water a day, then just plain water. One article online says just drink it with a straw and that will reduce the chances for enamel removal. The benefits listed were good.
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Always so happy to log on and see more good news. Go 42young!
I just realized that I've lost track of what cycle I'm starting next week. Is it 39 or 40? It occurs to me that it's very good when one begins to lose count!
FYI, I got so caught up in lamenting my root canals and wrist fracture that I failed to report on my end of September scan results. Both my MO and NP, who once before mumbled that I appear to be NED, this time grinned and exclaimed that my scans looked "beautiful." Both enthusiastically proclaimed "No evidence of active disease!" I don't know whether anything changed, or they just felt sorry of me because of my terrible toothache, but I'll take it.
I hope that those of you who are new here, and terrified, know that life *can* go on, and be good.
Hugs to all,
Penny
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Penny, I heard a discussion of oncologists commenting on how they sometimes see a clearly-improved scan more than two years after starting I-F, and they don't get that with standard therapies- they assume it is because of the Ibrance stimulating the immune system to take out cancer cells. So you are truly healing more the longer you can stay on I-F
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An interesting report is just out from Japan, analyzing who does best on current therapy- they conclude:
A total of 1031 cases were evaluable for overall survival (OS) analysis. Multivariate analysis showed that younger age (< 60 years), longer time from MBC diagnosis to fulvestrant use (≥ 3 years), no prior palliative chemotherapy before fulvestrant use, and progesterone receptor (PgR) negativity (PgR-) were significantly correlated with prolonged OS (median 7.0 years). For cases with histological or nuclear grade data, lower histological or nuclear grades were also correlated with longer OS. In recurrent metastatic cases, long disease-free interval (DFI) was not correlated with longer OS.
It's the first time I've ever seen a report decide that PR-negativity, which is common in metastasis, can be associated with a better outcome, usually the reports are the opposite, so perhaps there are different subsets of PR-negative tumors? And usually they say those with longer disease free interval do better, but that was not the case here..
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Thanks, Cure-ious, that's an interesting article. Here's a link, in case anyone else wants to take a look: https://link.springer.com/article/10.1007%2Fs12282-019-01029-3
It's amazing that the median overall survival for all patients was 7 years, with 20% of the patients reaching 15 years. For the patients with "favorable" prognostic factors, we can infer that it's longer, but they don't show a separate curve. That's a pretty big difference compared with data we tend to get from 1st line ER+ US clinical trials, which peg that median to just over 3 years. Some of that difference is probably explainable by differences in biology (Asian patients generally tend to do better), but it seems much too large to be just that. Especially since this study was pre-CDK4/6 approval in Japan.
They do mention that their analysis might have been biased by excluding the very ill/rapidly declining patients that never get to have fulvestrant - their analysis was aiming to see how timing of fulvestrant associates with OS. This may explain the better survival, and it might also explain the counter-intuitive findings of DFI making no difference and PR- being better than PR+. Still, that's an amazing OS number, and I hope that whatever the selection bias was to get to that number, it applies to most of us.
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Not sure where to post this, so I'll try it here. My MO does both a CA27-29 tumor markers test and a CEA markers test. I understand the CA27-29, and it seems to be accurate for me. I don't fully understand the CEA test, and it's relationship to the CA27-29 test (if any). I've looked both up and read the info that's online. What I want to know if this: my CA27-29, though not normal at this point in time, has come down significantly since I started treatment with Ibrance/Faslodex. My CEA has come down a few points, but I'm still in the low 20s and as a nonsmoker, I should be at 3 or below.
Does the fact that my CEA is not coming down more mean that there's something else they haven't found yet? I will post to my MO next month when I see her, but this is puzzling me and I hope someone knows more about this than I do. Thanks.
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Newbie question here - Day 16, Cycle 1 and was just wondering what everyone takes to help manage the bone and muscle pain? It feels like everything is on fire (if I don't take some Advil) and like I have steel rods inserted in my limbs they are so stiff. Have had a few rounds of loose stools today too which Immodium is holding in check at least. Worried as I have been taking 800-1200mg of Advil a day since June to manage the back pain and if I dont take it I feel really really bad - nauseous and irritable, but no sign of fever.
Blood tests two days ago showed everything fine and in normal range. Maybe I just overdid it this week. Im hoping after two cycles this all passes; I am so tired of feeling sick - I haven't felt normal since mid June.
On the plus side I get cold flashes, unless its 4-6am and then I get a brief hot burst for 10 seconds or so.
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Sondra,
I'm guessing the bone and muscle pain are from the letrozole, not the Ibrance. I was on letrozole by itself for 13 years. When I had bone and muscle pain, I would take either Tylenol or Advil or naproxen, or alternate among the three. If it was really bad, I'd "layer" them -- so maybe take Tylenol, and then 3 hrs later take Advil, or something like that. I also used hot water bottles and those pain patches with capsaicin if it was in my back.
I'm on cycle 5 of Ibrance and fulvestrant, and I haven't had diarrhea with the Ibrance but twice since I started and I took Immodium for that. Most of the time, I have the opposite problem. So no help there, sadly.
Glad that your blood tests are showing everything is okay. I do notice that when I overdo, I am a bit more achy and tired.
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Piggy - I re-read the paper, and it seems they did some selection particularly only including patients who had fulvestrant use- if they went straight to chemo they were excluded, so they are looking at the endocrine-sensitive population. The one that surprised me was PR-negative was associated with longer survival, (so if you are PR- do not assume you will not do well!), although that could be off due to small numbers. And yeah, their chart shows some 15-20+ year survivors, and that in the days before CDK4,6 inhibition- very encouraging!
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Thanks again everyone for celebrating the good news with me!,
Still praying that others get a break for the holidays !
Love and prayers
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Congrats Ginny02
Tanya
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Hi everyone! I started my first cycle of Ibrance tonight. It's wonderful to see people having great results.
I've been reading the thread. One food to avoid that I don't recall being mentioned is lime. I was surprised when the pharmacist told me earlier this week. Of all the foods to avoid, limes are the only ones I love. I already had lime juice in my water when the pharmacist called me.
Hope everyone is doing well.
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Husband11, YES, gabapentin does make one drowsy. I take it morning and evening right now, I make sure to take it a few hrs before my ambien at night. Definitely improves sleep for me, tho my sleeping even with all that on board isn't the greatest, but it'sbetter than laying there wide awake unable to sleep most of the night which is where I was before. Hoping passage of time and processing things makes sleep my friend again. Serenity, welcome!! I will be starting 3rd Cycle very soon. I've found Ibrance very tolerable compared to the chemo you and I have done previously, you'll do great! Are you sticking with the Exemestane with the Ibrance or switching to different AI or going to Faslodex? Welcome aboard!! Having another newbie to go through this with will help with trodding through the cycles until we become pros like many on this thread
Sondra, I agree with Bev, it’s probably the AI that’s causing the bone pain. If taking Zometa that can be to blame too, I can attest to that. Nothing over the counter was helping me pain wise, saw some oddly were getting relief with gabapentin so I asked MO if I could try it and so far so good. Hope you can find relief soon! I do find too if I push too hard I feel it the next day so have to learn to take it easier on myself, which is hard when your a spring chicken, you just want to go go go, not possible now, I’m a decrepit spring chicken now
Picture of Violet this AM for Candy
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Radagast- Thanks for the pic of Violet !!!!!
She is a sweety. Give her a kiss for me. Yes, I kiss my cat. On the velvety nose. When I started Ibrance and my counts were so low, my sister said I shouldn't kiss my cat anymore. Pugh.... he is clean. Lives inside. How dirty can he get. Besides we all have our priorities. 0 -
Hi all, such great news and i really appreciate all of you! Tomorrow is my last day of my first 21 day cycle of Ibrance. Sadly, on December 1st I fell and broke my wrist. So far side effects of Ibrance and Fulvestrant seem to be fatigue but the wrist is making everything take twice a long to accomplish so that might be part of it as well.
Wasn't doing anything exciting (raking in my yard and slipped!). 7 years of femara definitely contributed to this as I have osteopenia due to the femara. Cast on my left arm (I am left handed) has slowed me down but my husband and kids have been helpful and with the recent cancer recurrence/treatment etc we were already planning on a scaled down holiday.
Someone had posted we aren't supposed to have lime with Ibrance. I was told grapefruit was not allowed but will check about lime too when I see my doc this friday.
Hope everyone has a great week!
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Hi aprilgirl sorry to hear about your fall. Many of us have had falls on this thread since ibrance and treatments. I know my ONC asked me if I feel dizzy or imbalanced at times because it is an se for my treatments. He was also concerned about the neuropathy in my feet contributing to the fall. A few on this threadfell a couple of times. I think it’s a collaboration of everything. I hope you heal quickly.
I hadn’t heard of lime being a fruit we shouldn’t eat but did hear about pomegranate, asparagus, starfruit and grapefruit.
There’s a wealth of info here. I’m sure others will chime in.
Tanya
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Question for group.....
What do you do with your empty bottles of Ibrance? Throw in regular trash?
The reason I ask is the literature says not to handle pills with bare hands. Right, we swallow the pills so what Is the big deal about handling them. Hahaha. But should we put in regular trash to go to the town dump if there may be residual in the bottles. I have kept all of mine (2 years worth) in a small bag. Should I just dump them?
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I've been dumping mine, but that's a good question.
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I've been putting my empty bottles in the recycle bin. It has a recycle symbol on the bottom
Tanya
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Radagast - Sweet picture! I'll stay on Exemestane. Still in week 1, but so far I haven't had any notable side effects.
April - Hope your wrist heals well.
On Lime - It was the pharmacist that sent the Ibrance who went through the foods to avoid. He also mentioned pomelo which I've never had. So, today I made Lemon Cranberry mini loaves. Mmmm.
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