Ibrance (Palbociclib)
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LaurenH - let’s pray we stay on track for many more years! I have contrast bone and ct scans April 25. 3 months from from my last scans- no pet scan
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Yay Gracie!!! Doing a happy dance for you! Don't we just love stable!
I'm doing my 13th cycle of Ibrance and I'm still stable so long may it last for all of us.
Cure-ious...I want to thank you for your very clear explanation of how the action of Ibrance differs from chemo when it comes to neutropenia. I knew it did differ and I kind of understood it in a foggy way but you've made it simple for a science dummy like me.
Chani...I'm often nauseated and sometimes I vomit after a meal even though I've been taking Ibrance for over a year now. Just a couple of points that I hope will help you somewhat.... you probably know this but Femara causes muscle and joint pain and heavy legs in some people. I get very weak, tired and dizzy in my third week of the Ibrance cycle. I'm in that week now and whether I like it or not (I don't like it!) I have to rest more than usual. You could have been overdoing it as it sounds as if you did a lot before that happened. Also, my haemoglobin level rarely goes above 100 which contributes to the dizziness, weakness and feeling short of breath that I get but my MO has checked and it's not iron deficiency anaemia so eating iron rich food makes no difference. It's another thing Ibrance steals away from us. The dry nostrils are probably a side effect. I get that too; also a dry throat. I have to sip water during the night because my throat and upper respiratory tract dry out. I'd still do as you say and ask your MO about it but that's what happens with me. I keep an exercise book and each day I write a day sheet on a page in it, noting my meds, the time I took them and any side effects. I do that because I'm a participant in a trial for Ibrance in Australia and have to keep a diary so I write in my exercise book each day then fill out the diary before my consult. This way, I keep tabs on what happened when and I can look back at it. My neutrophils never go above 1.4 after two weeks' break!
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Thanks Leapfrog! I hope we al l get a good long run on Ibrance! Tumor markers still bug me, but I can’t change it so will just have to gowith it. Dr. Is dropping me to 100 mg. Because of the side effects. Fatigue and mouth sores along with dropping red blood counts are just a lot to deal with. I am nervous about the drop but I trust him to know what he’s doing.
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I rarely post here but do follow all the time. Some of you will have heard of Karen McLaren if you are from Canada and maybe also through an Ibrance Facebook private group. I just had a half hour phone call (yes~~the old fashioned way of communication) and fr starters, she is amazing. She has managed to good publicity towards getting Ibrance covered in British Columbia but also across the country and not just for Ibrance.
My understanding is that Ibrance taken with letrozole is considered first-line. Ibrance taken with Faslodex is considered second-line. She told me that she thought that because she had had chemotherapy including AC and Taxol plus others meant that she was second line. Can someone clarify for me that she is in fact first line because she is taking Ibrance with Letrozole? This is really meaningful because she and others have been hearing that first line only patients will be covered assuming that the process comes to that conclusion in British Columbia. I have always thought that I am second line because I took aromatase inhibitors~~ anastrozole for almost 5 years. Looking forward to hearing from you experts.
Marian
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Marianne I was very heavily treated for BC including AI but when MBC was DX IF was considered first line. I had been off of them for several years prior to MBC DX, though. I don't know if that was part of their criteria.
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This issue has worried me for some time. The pan Canadian Oncology Drug Review (pCODR) recommended funding Ibrance in combination with tetrazole ONLY for first line MBC, as this is the same admission criteria as the PALOMA trials. In these trials, women either were de neuvo at Stage 4 or had been previously treated at Stage 1-3, and then been diagnosed as Stage 4. There was NO data on how the L/I combo works after other treatments for STAGE 4, when pCODR made its recommendation. There is now some weak data that supports use after other treatments.
There lots of women here, including me who are doing well on tetrazole and Ibrance after other treatment for Stage 4, but that's not hard data. When Ibrance became available in the US, and Pfizer opened the compassionate use program in Canada, they allowed any one at Stage 4 to be prescribed Ibrance, regardless of previous treatment.
Most provinces follow pCODR's recommendations carefully. As a result, they will follow pCODR's recommendation and only fund it as the first treatment for MBC. This happened in England too. It is only available for first line. If women were on something else first at Stage 4, they aren't getting Ibrance,
The next step is for Pfizer to reapply to pCODR for a recommendation for use in second line, as the data becomes available.
Hobbes
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Hello Ladies
I'm another one that reads sporadically and posts even less! But I want to say that I love to read the discussions and the info because you just don't get it anywhere else and sometimes you're just curious.... So, I started on 125mg, had to stop after 10 days as counts too low, had to take 2 weeks off to recover to 1, started 100mg, again, had to stop after 10 days as counts too low... another two weeks off to recover.. I started 75mg and woo hoo.. at 10 days I was 1.4 so was allowed to continue - I still have 2 pills left to take in this cycle but am super happy that I have managed this without any SEs (in fact in the 2x 10 days of the other attempts I didn't have any SEs). I probably wouldn't notice SEs unless they were severe as I work full time and have a 2 and 5 year old to chase after so don't have extra time to think about things! I wanted to let you know that I travelled and have brought my Xgeva and Faslodex injections with me and another bottle of Ibrance plus other pills and didn't get stopped at the airport. I'll have my bloodwork done and communicate with my onco to check that all is ok to start the next cycle. I've booked in to meet an Onco here in Madrid and get my shots.. so, if you are away for some time it is possible to coordinate. Have a good day ladies, sending sunshine, positive vibes and happy thoughts xx
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JoT, it is impressive that you were able to coordinate securing and traveling with all of your medications internationally! Well done!
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Hi all! Happy to have stumbled on this site! I am still shell shocked to get a Dx of MBC after a trip to the ER for back pain/breathing issues. After 11.5 years, I only thought of BC when I went for yearly mammograms.
Anyway, here I am on my first cycle of L/I. Typical SE of nausea, fatigue, diarrhea. One thing that I haven't seen mentioned is eye sight. I've been experiencing double vision, very blurry that isn't resolved with some blinking. In the past I've had some issue with double vision, typically when tired. It's to the point that I have to read with one eye closed. Not driving at all. Any else have any vision problems?
I really appreciate the information and support shared here!
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Welcome, Key. We're happy to have you but sorry that you need to be among us. I was 27 years out when I was diagnosed MBC. I am on I/Faslodex and so far have no SE except for being more tired. Wishing you the very best in your journey with us!
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Key51 - welcome to the discussion. I understand you being shell shocked as I, too, was shocked at my MBC dx last month after 15 years.... it’s like you finally reach a place where you feel like it might be behind you and then BAM. :-(
Anyway - it is possible that Ibrance causes vision issues and perhaps others will chime in, but I wanted to ask if your doc ordered a Brain MRI as a part of your Mets work up? I asked mine to order one as the PET only covers neck to knees and I just want to know that there is nothing lurking there. Mine is scheduled for April 10.
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Welcome Key - sorry that you have to be here, though it is a great place
I have foggy vision, not double, everything is hazy, If it is a bright area I see better, but I cannot read the television writing for what's on etc., I have mild SE of diarrhea, sore body and fatigue as well - I can live with them if they are stopping progression!! I too was diagnosed because of back pain and deep breathing issues, go figure...Happy Sunday everyone!
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Hi Key51, and welcome to our little site although I am sorry you have to be here. I have blurred vision sometimes but no double vision. I went to the optometrist and he said my eyes were healthy and the blurred vision is a result of the medicine, so no big worries. I can still read and crochet. When my vision blurs, I stop and give them a rest. Some days are worse than others. I have never had a brain MRI as I have no other symptoms for that. I have fatigue and some mild nausea and diarrhea, but I have good results so I will take it.
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Welcome Key! You’ll find great information and support here.
In my experience the side effects have diminished over time. Some of the discomfort seems to have come from the healing that takes place in those first months. I do still get tired at the end of the cycle. Exercise definitely helps!
My vision has been affected since I started on this combo. (29 months) Being tired makes it worse. I can see to do what needs doing, but the fuzziness and double vision is annoying. Working hours at a computer screen made things worse and I frequently use eye drops. I put up with it :-/
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Gracie! Hooray for your stable news! Very happy with / for you! Always so uplifting to see especially for the newbies.
On a 2 week break between cycle 5 and 6 here. Only lasted 2 weeks on cycle 5 on 100mg before ANC was 0.5. Dizziness not present this cycle but mouth sores were for the first time since cycle 1! If it’s not one thing it’s another I suppose. Going to 75mg for cycle 6 and hoping come late April scans I am still seeing improvement.
Welcome to all the new members. Sorry you’re here too! This is the best place to come for great resources and to not feel alone.
Thanks Cure-ious and others for sharing all their scientific knowledge and data! I eat that nerdy stuff up! Appreciate the insights
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Hi, This subject is very confusing to me. I have been on Ibrance with Extamastane for 3 weeks and now on one week off. I am very concerned because i have been on Extamastane before. That makes me second line? I am Stage iv with skin and bone mets and have taken Faslodex before. But did not work for me. Not sure if i should be taking Ibrance. Dr does not like it when i question his advice
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Joan, first, dump that doc- and FYI first line, second line, etc only refers to post-metastasis treatments. If you were on exemestane when you had recurrence, I would guess you might want to move to Femara with your Ibrance, But regardless always get a second opinion regarding mets, and shop for a good doc, if you set the bar high in the first place you'll save yourself a lot of time for future decisions, hopefully not for a long long time... Also add your personal treatment history to your profile, makes giving advice easier..
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Hi all,
I'm pretty new around here and this is my first posting on this thread. I wanted to chime in on the vision issues.
Key, I was diagnosed with MBC because of double vision. Not blurry, not comes and goes, just bam...turned my head while driving and suddenly saw two of everything. After a head and neck MRI it was determined I had a tumor pressing on a nerve in my neck...sixth nerve palsy is the fancy name. No brain involvement. I had radiation to my neck and skull and it was gone.
I have noticed much poorer eyesight after 7 months on F/I but I have some pretty bad cataracts so I can't be sure if the meds made it worse or not. Surgery coming up on one eye in the next month or so.
Good luck to you...this is a crazy ride and shell shocked is putting it mildly!
E
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Gracie....I'm on 100mg of Ibrance and my MO says studies show it's just as effective as 125mg so don't worry too much. It will be fine.
Key51....welcome to the Ibrance band. We have some seriously clever women here (not me!) and between us we can answer most questions that come up. Re vision, I'm on my 13th cycle and my vision is constantly blurry but I've just had to accustom myself to it. I'm not happy to drive with my vision like this so I don't and I really, really miss it.
As much as I'd like to say the side effects have lessened over time, I'm sorry but that hasn't happened for me. I do feel extremely well, though, for the first two weeks and that's just happened recently but during the second two weeks I'm dizzy, very tired and often nauseated. This isn't the same for everyone. I think in my case it's because I have a low haemoglobin level. Even at its best it's 100 and I think that has a lot of bearing on my fatigue and dizziness as it would be well down in the 90s during the last two weeks.
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Elle: I am also having problems with my vision since I am using Ibrance/Letrozole. I have blurry vision like my eyes cannot focus properly. However, this SE comes and goes. It is worse when I am tired.
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Hi, everyone.
I've been off the boards for a while. Just checking in. Funny about the vision topic coming up. I was just noticing how bad my vision had got last night. Guess it's down to the meds.
I'm also tired, dizzy and mentally foggy at the end of the cycle. However, I don't get nausea or diarrhea much anymore after giving up cow's milk, and anything made from it. Something to consider, unless you have already done that.
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Thanks Ashlyn, I hope and pray it works for a good long time for all of us
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March 23, 2018Everolimus Plus Letrozole: An Effective First-Line Therapy for Advanced Breast Cancer
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The median OS was not evaluable, though the estimated 2-year OS rate was 78.7%.Everolimus plus endocrine therapy may be an effective first-line combination for postmenopausal women with advanced, estrogen receptor–positive (ER+), HER2-negative (HER2-) breast cancer, according to a study published in JAMA Oncology.1
Evidence from previous studies suggests that everolimus plus endocrine therapy (eg, tamoxifen, fulvestrant, letrozole, and exemestane) improves progression-free survival (PFS) among patients with hormone receptor–positive, HER2- breast cancer.
For the open label phase 2 BOLERO-4 study (ClinicalTrials.gov Identifier: NCT01698918), researchers treated 202 postmenopausal women with ER+, HER2- breast cancer with first-line oral everolimus 10 mg plus letrozole 2.5 mg daily and, in the case of disease progression, second-line therapy with everolimus 10 mg plus exemestane 25 mg daily. Ninety-six percent of patients had metastatic disease and 4% had locally advanced breast cancer; the median age was 64 years.
After a median follow-up of 29.5 months, the median PFS was 22 months (95% CI, 18.1-25.1) for patients treated with first-line everolimus and letrozole. The median overall survival (OS) was not evaluable, though the estimated 2-year OS rate was 78.7% (95% CI, 72.1%-83.9%).
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Of the 50 patients who received second-line therapy, the median PFS was 3.7 months (95% CI, 1.9-7.4).
The most frequently reported grade 3 to 4 adverse event (AE) was anemia; the most common all-grade AE was stomatitis. For patients receiving second-line therapy, the most common grade 3 to 4 AE was hypertension, and the most frequently observed all-grade AEs were stomatitis and weight loss.
The authors concluded that "everolimus plus endocrine therapy is a good first-line treatment option for postmenopausal women with estrogen receptor–positive, human epidermal growth factor receptor 2–negative advanced breast cancer."
Reference
- Royce M, Bachelot T, Villanueva C, et al. Everolimus plus endocrine therapy for postmentopausal women with estrogen receptor-positive, human epidermal growth factor receptor 2-negative advanced breast cancer. JAMA Oncol. 2018 Mar 22. doi: 10.1001/jamaoncol.2018.0060
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I spoke with my optometrist about my vision problems which I believe are worse since taking Ibrance. She felt it may be making my eyes more dry and suggested using eye drops several times a day. It helps for,a while after I put them in, then eyes dry out again.
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CChilders79,
I was having the same issues, dizziness, weakness etc. Found out my blood pressure was 84/46. Stopped my bp meds and have had stable bp' s since then. Also make sure you are well hydrated. Dehydration will cause low bps and similar SE. Hope this is helpful.
Melissa
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Hobbes..thank you for forwarding the article regarding everolimus and letrozole study. Doesn't appear to be a good 2nd line therapy or am I interpreting this wrong? The authors mentioned only 50 patients with median PFS at 3.7 months.
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I have a question..I think some of you have lung mets or a lung met. I have had one lung met right lower lobe modular pulmonary lesion 0.7 x 1.1 cm max SUV 3.5. I have had fluid removed twice. This,lesion has decreased slightly. Right now Onc does not want to take out because each time I have fluid removed it has been full of cancer cells. I guess the question is for those with lung mets...do you think Ibrance is working on the lung mets since the decrease has been so minimal after 2 yr diagnosis? She says the bone mets you can barely see in the Pet/CT. Just would like some thoughts.0
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Airlinegal yes I have numerous lung mets and in the pleural lining. When I first started IF over a year ago, they were 6 uptake on PET. Now most of them are under 4 but still active. I never had to have my lung drained so I feel lucky about that.
So is IF working for me? I think yes but I think I'm close to progression. There was at least one lesion that was more active in my most recent scan. Also, my F1 report shows ESR1 alteration which shows my tumors to be resistant to AI. I think after my next scan in May it will be time to change TX. To what drugs is the big question.
Have you had an F1 done yet? Do you have difficulty breathing? I am fortunate to have not had much trouble with SOB. I had more at first and low sats. Your MO could re biopsy your met to see if it has changed in the past two years. That might give her more information to change TX.
I don't know if this answers your question, it's just my personal experience.💞
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Grannax2....thanks for your input. Will have more questions to ask the next time I see the Onc.0
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Lissalou and Leapfrog.
Thanks for that. I keep myself pretty hydrated mostly water only one cup of a coffee if needed. My bp's have been great unless after a surgery then I am tachy. It hit me again Sunday night and I broke down and messaged my MO and they decided to give me anti nausea meds and omeprazole (an antacid) that should help. Picked those up today. I am on week two and legs yeah feeling heavy again. First week is always the worse. Today I was a little productive and got laundry done and put away (its been sitting since last thursday). Other than that doing okay. I hope everyone has a fantastic week!!! Thanks ladies for being so helpful and I love this community.
Sincerely,
Chani
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