Ibrance (Palbociclib)
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Rosie24...my ophthalmologist recommended Systane Ultra for dry eyes. On occasion I have woken up in the middle of the night with my eyes just pouring tears out non-stop due to dry eyes. It's terrible. But mostly I get blurry vision due to dry eyes. By the evening it can be bad. Systane Ultra seems to help although I probably don't use it as much as I should.
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Snooky - my thoughts and hopes are with you, that only minimally invasive treatment is needed. Stents seem to work miracles. Hugs.
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Hi all,
I'm new here, although I've been lurking for a couple months. This is my first post.
I'm 36 and was diagnosed de novo with bone mets in Nov 2020 (too many for rads, apparently). I was supposed to start my 3rd round of Ibrance tomorrow (after the one week off, bloodwork done yesterday) and my MO called today to tell me first - great news, in that my bone mets look to be healing (as per CT scan from last week) meaning the meds are working well ..... but then he goes on to say that my liver (err...enzymes? I missed which count it was, related to the liver) was four times higher than average. He didn't seem too worried - we'd take a break off of Ibrance for two weeks, repeat bloodwork, and if the liver-whatever count goes down, then it's likely the Ibrance that's causing it, and we'll look at either going to a lower dose or moving to a different targeted therapy. But what I couldn't help thinking was - if I move to a second targeted therapy, does that mean I already blew threw my first? My MO originally said you have about 3 tries at the targeted therapy before you max out and need to switch to chemo as a last stop (I understand that there are different forms of chemo to work through too, but I just would not like to need to do chemo any time soon, as you can imagine).
He also said that it's rare to get liver damage from the Ibrance (I thought I read somewhere in an article that it was about 3% of patients reported it) and I cannot tell you how angry I am if this is the case. So Ibrance is working on my bone mets, but my body may not be able to handle it - and on top of that, the WAY in which it cant handle it is ALSO RARE??? I'm already 36 with MBC and I feel like everything over the past few months has been like... oh, well, maybe it won't be the worst case scenario. But no. It WAS cancer. and then it WAS metastatic. I'm having a hard time believing the liver stuff will be anything else than terrible news somehow.
I've been trying to do research all day to find anyone else in a similar situation but it seems that ppl take breaks or lower dosages of Ibrance mostly due to the more common reason of white blood cell counts. Has anyone had experience with liver problems due to Ibrance, or know anyone who has?
Does is make sense to do the terrifying math that - my MO said many people get about a good 2+ extra years on Ibrance... but if that's the case and I originally had 2+ years (hypothetically) PLUS two more possible targeted therapies.... does blowing through my Ibrance this quickly (IF that's the case) mean that I thus have a shorter life span? Or is it possible to get a few (or many?) years off of the second targeted therapy if the first hates your body?
I'm really hoping my liver stuff is due to something else that is easily remedied but I have no idea what that could be. And really. What are the odds that something coincidently made it pop up now..
Thank you so much anyone for any support or advice. Sometimes I think the hardest part of all of this is dealing with the unknown (when/why/how/how long). I'd love to be just making the best of every day right now, just in case, but this stupid pandemic is putting a giant wrench if all of that too. I'm at least grateful to be in an area of Canada with currently low case loads, but I also just needed to vent at how shitty it is.
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Eastcoast Librarian-Sorry that you find yourself here-especially at age 36! But glad you are checking in. I have never heard about anyone having liver problems from Ibrance. If your liver numbers do not go down, I would get a second opinion before dropping off of Ibrance, since it is working on your bone mets. I don't know how easy it is for you to get second opinions in Canada but I hope you can. If for some reason Ibrance isn't tolerated by your body, that doesn't mean that another treatment won't be. You might get a lot more than 2 years from another targeted therapy so don't worry too much yet. The most helpful advice I can give for dealing with MBC is to deal with today's troubles today and don't worry too much about tomorrow's troubles until tomorrow. (Matthew 6:34 for any of my Christian sisters). Best wishes as you navigate this challenge.
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Jackie,
Thanks for letting me know what you're using for dry eyes. My eye doctor recommended Optive Refresh Mega. I tried to insert a pic but couldn’t get it to work. I think I don't use mine enough either. I'll look for yours & try it out.
EastCoastLibrarian, Welcome to BCO, but sorry that that you have a reason to be here. I have no specific advice other than to keep reading here if you find it helpful, but pull back if you get overwhelmed. For me it helped to learn as much as I could from others in my position, and I'm still learning. There are many kind, supportive, and knowledgeable people here. I hope your liver count improves with time off of Ibrance, and that soon you fall into a routine that makes things easier.0 -
Welcome, EastCoastLibrarian-
We're so sorry you find yourself here, but we're glad you've joined our community. We're all here to support you.
The Mods
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Hi ECL -
I think the answer to your question is no one knows. Its tempting to add up all the potential years you could get from therapies based on averages, etc, but I've found it better to not think in that way as it all very much comes down to your individual specifics. There are ladies on here who blew through some of the targeted therapies but are enjoying good runs with minimal side effects on IV treatments or clinical trials, or ladies who have far exceeded the Ibrance median. Its tough when the MOs go on about the mean 2 year stat (mine did this last month even!) but MOs tend to be almost like engineers - very data and evidence driven. I let that stat sail on by and choose not to dwell on it, although that is tough in this pandemic when you can't do anything.
As for the number of targeted therapies allowed - did he mean in regards to how it is licensed in Canada? For example, Ibrance is only for first line in the UK, there is no switching in and out or trying it again down the line as it can be used in the US - you get one shot at it. If you move from Ibrance to another similar CDK 4/6 inhibitor like ribociclib I'm not sure that necessarily means you are blowing through treatment lines. When the cancer eventually figures out how to get around these drugs, it will be able to get around all of them, not just one. So clearly you are responding to the class of drug but whatever is going on with your liver (may be how it is processing it, may be a testing fluke, etc) if its still going on its worth trying a different drug, to which you may have an outstanding response, in the same CDK 4/6 class that won't have the adverse impact to your liver. In the UK, I believe it is palbo, ribo, and abemaciclib that are licensed, so if its the same in Canada, he may have meant those three targeted therapies (in the CDK 4/6 class) can be tried and if you have an adverse liver response to all of them then you will need to be moved on to another therapy type (but there are others that aren't necessarily IV chemo). He may have been trying to be reassuring
I definitely understand the frustration of feeling like you are "falling" through bad news, wondering when you will hit bottom. It makes a person gun shy to believe in anything hopeful!
Do keep us posted though and engage with the de novo, bone mets, and ibrance theads!
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EastCoast, Sondra gave a great response. I wanted to let you know I started a de novo thread a little while back. This link doesn’t bring you right to the top, so you’ll have to scroll to the beginning. I’m so sorry you find yourself here, and I hope the liver question gets sorted out quickly.
Here is the link.
https://community.breastcancer.org/forum/8/topics/876918?page=17#idx_487
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EastCoast - it seems like every cancer and every person is different. And things change. I just finished Cyle 17 of Ibrance and Arimidex. I am scheduled for a PET next week because it looks as if the cancer might have spread (via lymph nodes?) to the skin. A very recent rash and fibrotic tissue cropped up. A punch biopsy showed BC in the right chest area adjacent to the tumor in the axilla. My oncologist wants the PET because regular CTs have shown nothing, and she is concerned CTs missed it and that it might have spread elsewhere as well. She keeps saying "new cancer" or possibly spread,but it seems as if there is no way of knowing. She is thinking chemo and did not mention other options. I will ask, it seems like others have posted switching to other targeted therapies. This is the 3rd BC, and each time she says new cancer, convinced that treatment has worked, and that each incident is a new one. I want to scream!!!!!
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Eastcoast Librarian,
The 2 year MBC survival stat comes from evidence that precedes the introduction of the CDK 4/6 inhibitors like Ibrance. In trials, Ibrance has shown a two year Progression Free Survival stat, which is meaningful. There are still people on the original Ibrance trial from 7 years ago. The early months of this dx are so tough, especially being diagnosed de novo at such a young age. I was dx at 40 and am nearing year 5 on Ibrance.
In the fine print about the drug, it mentions that it can make liver test numbers higher. Good to retest and then assess with someone who is very familiar with the drug.
Wishing you good days ahead. This is a very savvy group so ask lots of questions. We’re here to help.
Je
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Snow-drop-- How was your MO appt? Was this week, right?
Anyone heard from RK2020? She has not posted since Christmas and she had an appt due too.
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Candy, I really appreciate you asking about. I needed it to talk about it. The new MO seems nice, it was second meeting with her in about 2/5 months (the first one was very brief just to register with her to get my injections and medications placed). it was via zoom, I was few minutes late as the hospital’s portal was open to public for making appointments for Covid vaccine (65+) and made the portal so slow. The meeting was almost 20 minutes long, the longest meeting I ever had with an MO so far! She went through past scans: ct, bone and pet, and suddenly said CT scans asap depending on the results cat scan later, also asked about my breathing but I forgot to add I feel heavy in my chest sometimes and during my sleep I feel like I am drowning, anyway it will show up on scans if it is something.. Part of me is worry other part is not! in visit summary, she wrote down something from last scans that I am sure it never been discussed before. So now 3/4 worrying. anyway, a week of scanxiety just about start. about rising MCV and MCH levels, she said something about bone marrow, and she is not too worry about it now unless anemia is getting worse. Xgeva will start again. Other things that I should be worry about later is that as far as I understood she is not a big fan of ibrance, and not interested to reduce the dosage.
RK, Cicia please do check in.
Hello to all 👋
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Thank you everyone for your supportive and informative responses! It has really helped to ease my anxiety a bit. I'm still struggling to find the right people in my life to talk about this stuff with - I'm finding there's a fine balance between people being overly positive (in the - don't worry, "you'll beat this soon" kind of vib, and which requires me to remind them that I'll be living with stage four for the rest of my life, in whatever capacity that may be), versus, on the opposite end of the spectrum, sometimes I tell ppl my updates and they seem more stressed than I am about it, which just makes me spiral even worse. I know no one really knows the perfect thing to say to me and I don't fault them for that. I'm just still finding my comfort zone with my support crew, I guess. I really am so grateful to have so many people around me who care (albeit, from afar because I live alone and am not going out right now because of covid concerns, argh).
I'll let you all know what my blood tests/MO says when that happens on Feb 2nd. Fingers crossed for the best news possible, whatever that may be. Thanks again!
Uughh, so sorry to hear about your spread, BlueGirlRed! I'm right here screaming with you, sending positive vibes.
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Snow-drop-- Glad you had a good Zoom meeting with it being 20 minutes long!!! When is your CT? You said a week of scanxiety. So next appt to discuss CT results? She is not a fan of Ibrance? Why? Keep us informed.
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I first posted this on "getting pushback from oncologist genomic testing" posting it on other sites hoping to get help. SpecialK had posted an explanation of genetic testing profiles and genomic testing. Come to think of it, I did the OncotypeDx in 2016 which suggested chemo would be helpful. But I think the tumor did not shrink much.
My oncologist is out all week, but I want to be ready with good questions. Has anyone else done a genetic panel like this, checking for over 600 markers? Was it helpful? She wants me to do a genetic profile of of over 600 markers to help determine the next step. Insurance is unlikely to pay, they already denied one 1 1\2 years ago specific to BC (over 20 markers looked for,nothing found), saying it was not relevant to diagnosis or treatment. The Lab says they will work with me/ my insurance if denied, and the maximum if denied would be $500. If the results would truly be helpful, I guess it is worth it, but if is not helpful, it is a lot of money wasted and more discouragement. This is BC #3 for me,and it appears to be spreading into the skin. She thinks each cancer diagnosis is a "new" cancer rather than recurrence because of time interval or location, but admits there is no real way of knowing. She has ordered a PET to see if it picks up anything regular CTs have missed. So far CTs have not found anything in bones or organs. She thinks the treatment for BC#1 and BC#2 were successful, but I am having serious doubts. She thinks the Ibrance/Arimidex for BC#3 is no longer working, and is thinking chemo. What should I ask? I did chemo in 2016 for BC#2. If I have a genetic flaw that keeps making cancer, should I just throw in the towel? Or if the flaw is identified, would it point to a targeted treatment? Yes, I am discouraged. But what should I ask? I used to scour the internet to try and get a better undertanding and write a huge list of questions, but now I just want to scream.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right
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. 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
6/2019 ER+ R-axilla. Symptom was a very swollen Right arm. Ibrance and Arimidex. 12/2020, "rash" on right chest wall and fibrotic tissue between neck and shoulder. Punch biopsy showed BC in skin. I had noticed decrease range of motion prior but attributed it to old injury, not working out at gym because of covid, geting older and older.
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To my surprise and relief, my PET-CT shows progression, but is limited to spine..If the PET-CT is better at visualizing bone mets, why do we even bother with nuclear bone scans? My MO says its because the one is a confirmation that the results are real and not just some spots that may go away next time. Anyway, I am glad we caught it now. I had a Foundation One blood test yesterday to look for ESR1 mutations. If there are insufficient circulating tumor cells, we will do a bone biopsy to look directly for the mutation. I will stay on Ibrance-Femara until we have the results of those tests.
If there is an ESR1 mutation (these can develop as a result of years spent on an AI and cause resistance), then I will try to get into a clinical trial. Especially if there is an ESR1 Y537S mutation, which is a rather common one and studies have shown it does not get degraded by Faslodex. In that event, I would try for the Lasofoxifene-Verzenio combo trial, which dosed their first patient last October, or the ARV-471 trial that AlabamaDee is on currently. If there are no ESR1 mutations, then I would move to Faslodex and probably just keep the Ibrance. Am celebrating and very grateful for the time I have gotten on I-F...
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Snow-drop, I wanted to let you know my MCV and MCH have been high since the very beginning of treatment. I have anemia and have had it since October of 2018, before treatment started. It’s stayed pretty consistent throughout. My doc doesn’t even mention it. My anemia is not iron related and not related to the treatment. We don’t know why I have it. I just keep an eye on it.
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EastCoast, I have a little blog on CaringBridge.com. I have a group of about 20 people on it. Instead of having to inform each one, I write on it about once a month to let people know what’s going on. It’s too hard for me to tell each one separately. They can then give me a heart emoji or write a response. I find it a lot easier. That could be an option for you. You invite who you want to be on it.
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Cure-ious,
I'm not glad to hear you have progression but am glad it is only to the bones. I sometimes wonder about the value of the bone-scans myself. It seems like a lot of time and radiation for vague information. Sounds like you have a well thought out plan to deal with whatever the Foundation One or bone biopsy reports. Feeling your relief. For selfish reasons I hope you stay on Ibrance because you keep educating all of us.
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Thanks, Chicago- There were reports in the beginning of Ibrance that it could be accompanied by a "rebound', where progression on the drug was accompanied by an explosion of new mets, however I haven't seen any stories about this recently and it didn't happen here
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Cure-ious sorry you have progression but if you have to have progression this is the best kind. Still lots of options for you to consider. It will be interesting to see what your Foundation 1 report shows.
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Cure-ious: Sorry about the progression. Since you said the progression is limited to the spine, are you also considering SBRT or radiation? Hopefully you receive the foundation one report ASAP
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Cure-ious--- I am sorry to hear of your progression and the need to move from I/F. Glad though it is limited to bone-only still. You are our clinical trial guru, so not surprised you will try a clinical trial next. Good for you. I wonder if I will just want to go to the next "established" treatment at progression. Trials are a good option, but scary too. Keep posting so we can follow your trial experience.
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Candy, My MO’s first line of treatment for stage 4 is only hormonal therapy as single agent, for me locally advanced met to bone, for example, she would start with faslodex. Then after years she might add targeted therapy. Also she won’t reduce dosage of ibrance, instead she suggests one week/ off one week. I am happy I haven’t started with her lol! No date for scans yet but I expect it to set in about a week or later, waiting for approval from the hospital first then they send doctor’s order to insurance for authorization, annoying hospital-addition-step-policy!! It is funny a none medical staff will make decision over an oncologist order! My MO placed the order Friday, so weekend then lazy Monday...
KBL, l am sorry you have anemia and rising counts as well. I had sever iron deficiency 2015, now that mbc from the beginning I relate many things, maybe it was a sign, that simply missed. We don’t know when these nasty cancer cells started to grow in our bodies.
Cure-ious, I know you have done a deep research about this progression and you map potential next steps, but have you considered to take MRI as well? To have a better picture (more accurate), size, location etc of tumors, as Tinkerbell said radiation might be an option?
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Snow-drop--- Where are you from, where getting treatment? My previous MO (locally in my hometown, rural doc) started me on Ibrance/Letrozole/Lupron when I was first diagnosed with Stage 4. Now that I have moved to another MO (in next State over, larger cancer center) they agree with the treatment plan for now (until progression, and then ??, we have not discussed that yet). I am surprised your MO does not do targeted therapy from the get go. I thought that was standard of care now days. So... depending on your scans... would she stop the Ibrance since you are already on it?
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Hi Snow-drop, Aprilgirl1, JACK5IE,
Thank you all for the well wishes!
I had my scans done on Thursday this week and the MRI brain came back normal; however, the PET scan showed progression of disease with a new spinal lesion and 2 foci of uptake in my liver. An MRI abdomen is going to be ordered sometime this week to confirm. I'm still in shock, cause I was only dx'd with mets to bone on June, 5th, 2020 and have already failed 2 treatment regimens (Ibrance & letrozole and then Ibrance & fulvestrant). I have two MO's since my insurance changed and my meds must go through my employer's health plan. My original MO wants to put me on Afinitor and fulvestrant and my Jefferson Health MO wants to put me on PIQRAY and fulvestrant, since my Guardant360 liquid biopsy came back positive for Pik3ca. They are not on the same page, which makes for me nervous, so I'm thinking about getting a 2nd opinion at UPenn. Of course, my family and I are devastated by the PET findings and are trying to stay positive, but could definitely use some words of encouragement at this time.
Thanking you in advance for your support!
Kathy
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Cure-ious and Katrose...I am so very sorry that you are both dealing with progression. I hate this disease and I hate hearing about what all the wonderful women here are going through. Please know that you are both in my thoughts and prayers.
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Katrose- So sorry to hear of your progression. I am a believer in MRI's. I have always done CT's, and with my first MRI in Oct of 2020 it showed the liver mets in more detail. Maybe after your MRI they can advise on a biopsy of the new liver mets. That will show if your HR or HER2 has changed. I cannot advise on either of your MO's plans, but they both seem reasonable.
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Katrose,
Just a quick weigh-in here. I just realized that your cancer is lobular, as is mine You might want to get another opinion at Penn -- with Dr. Rachel Jankowitz. She used to be a U Pitt, but changed over to Penn maybe a year ago or so? She is on the board of the Lobular Breast Cancer Alliance, and for my money, she would be a good person to break the tie or to suggest other things for you. ILC tends to be slower growing than IDC, so it seems a little bit unusual that yours is growing at what seems to be a quick rate.
Also, for what it's worth, I think that liquid biopsies are great, but I will tell you that there was not complete concordance between my Foundation One Tissue biopsy and my F1 liquid biopsy. The tissue biopsy came up with a lot more than the liquid one did. I don't think that there's anything wrong with a liquid biopsy, but if you can get a tissue biopsy done, it just seems that it might show a bit more about what's going on -- why you might want another opinion or at least raise this with your MOs.
Good luck in getting some answers.
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JACK5IE - Thanks so much for the prayers!
candy-678 - Thanks for your input on the MRI and possible biopsy. I was thinking the same thing as I know a tissue biopsy is better than the liquid biopsy.
BevJen - Thanks so much for suggesting I see Dr. Rachel Jankowitz. I saw Dr. Kevin Fox back in 2010; however, someone that is focused on ILC would be a better choice.
Thank you all for your input, I really appreciate it!
Take care, stay safe!
Kathy
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