Ibrance (Palbociclib)
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Snow-drop- can you get a second opinion if. not a new MO who you trust and can keep up with your care?
Buttersmom- what about a different AI like aromasin? not as strong, but, if you tolerate it - it is better than being off one.
Gigil- Migraine headaches usually follow 15-60 minutes after an aura. taking medication during the aura can lessen the headache or stop it before your GI system slows down from migraine and you can't process the medicine- aura without headache is a different -good to keep track of which you are having
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snow-drop, it sounds like you need a new MO. I've never had to switch (other than mine retiring) and I have no idea what it takes to do that. You deserve to be heard!
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Snow drop have you considered a new oncologist
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snow-drop - definitely get a new oncologist. You are practically doing her job for her at this rate, with none of the information. Next after ibrance depends on biopsy of some sort to check receptors and any mutations that are actionable. Xeloda is a common next step, though.
I know it seems a pain to switch but you need someone on your side to take the mental weight of managing the actual medical aspects of your care and to intervene on a timely manner. Most of us on here have switched at least once Im guessing, and it was far less painful than anticipated.
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NKB I go to the oncologist. I will ask about aromasin. The only on I haven't taken. I know I was told when this first came up, that my issues have to do will lack of estrogen and the next step was fulvestrant. I would like to avoid doing that as long as possible. I feel like it is trial and error at this point when it comes to sleep.
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I had my appointment with my oncologist today. It has been about 6 months since my recurrence. Those six months have been a roller coaster ride. I told my daughter I feel like I should see a counselor. My thinking is becoming like my dad when his cancer progressed to the bone. He just gave up. Today I got a referral to palative care to help in monitoring my response to letrozole and counseling. He also increased my effexor. He said he was surprised he didn't need to do that sooner given how sever my psychological response was to letrozole. I will go for a chest CT scan at the end of this month. No other scans unless something raises a flag on the scan. I finally feel ready to take control of my life.
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brutersmom, (((hugs))) to you.
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Brutersmom- when I took ibrance in 2017, I guess it was new enough that they had a pharmD call me every few weeks to see how I was doing and actually met me in the infusion center during my Fluvestrant shot so I could connect a face. he was so sweet and knowledgeable about ibrance (the only cdk4/6i on the market then) that it was really reassuring to have that. I had MO appointments every 3 months.
I hope that the rollercoaster smooths out and it works a good long time!
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@brutersmom You are doing the right thing by accepting any and all help. It's a relief knowing you have access to pallative care. I don't know how we are suppose to get an handle on this when drugs create mental health as well as physical side effects, let alone the diagnosis. Don't let this damn disease steal your joy from you and your family. Now let's see if I can practice what I preach.
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I'm resuming Ibrance tomorrow after a 16-day break. I'm nervous about it since the last dose sent my esophagus into such severe spasms and vomiting that I ended up in Urgent Care/ER with dehydration and a fever. Fingers crossed for tomorrow.
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Nkb. I see my oncologist every month. The pharmacy department calls every month as well. I am on letrozole which is causing me a lot of issues. My oncologist is great but sometimes I feel like I spend more time with him trying to deal with all the drug side effects then the cancer. I am hoping this can help direct me in sorting everything else.
Irishlove I have been trying hard but the last few weeks I have been going down the rabbit hole again. I asked about palliative care back when the side effects started. My oncologist was away for the month. The nurses ignored me and then I saw a different Dr. who got me through the crisis and I never thought about it again. Today when I ask my oncologist about a therapist, he wasn't sure. (He is actually an interim oncologist due to a shortage at our hospital.) I said what about palative care and he made the referral. He said that would free him up to focus more on my cancer treatment. I am glad things are working out and I have the Dr that I have and I feel.a little more positive again. Sometimes it is a hard journey. I am happy for the support and ideas I receive from online support groups.
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I have been taken Ibrance with AI for over 2 years. I have bone only Mets when I first diagnosed as MBC. Ibrance worked very well in the first year and second and brought my CEA to 1-2 range. Since early this year, my CEA went up to 3, 4, and 5. My CEA lab yesterday is 7 and CA15-3 is 37. My CT/bone scan shows no changes on June 27. Is there anyone in the forum as similar experience? Does it mean Ibrance stops working for me?
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I'm stopping Ibrance. My dose on 7/9/23 sent my esophagus into such spasms that I was vomiting all day and ended up in the ER with dehydration. Got IV fluids, Zofran and felt better.
I got the OK to hold off for two weeks and resumed on 7/26/23. Same thing, back in the ER with vomiting and dehydration. I'm over it and am not going to take this again. I've had a persistent cough since May, but my MO didn't think it was related to breast cancer. The GI doc is trying to get to the bottom of the swallowing/spasms issue.
My MO never mentioned the possibility of the Ibrance possibly being the cause of the coughing problems. I will see my PCP today. I feel like I'm seeing multiple doctors with no answers. I'm down almost 12 pounds since June to 116.7 this morning. I don't have any more weight to lose.
Sorry for the vent. I'm not a happy camper.
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Sunshine99. I hope they figure out what us going on. Sounds awful
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@sunshine99 Oh my word you've really been thru a lot with Ibrance. You depended on this drug to help you and darn it sure failed you. Keep digging till you are satisfied with answers. I am so very sorry for your struggles. I recall reading side effects from Ibrance can be worsening of cough (perhaps irratating the lining of the lung)? Take time to heal and get weight on so you can find a better treatment plan. Sending love and prayers for your healing.
@Bluesea20 Hi there. I see you are a newbie, so welcome to the forum. I can't answer your question as I'm still fairly new to this MBC world. I hope someone will come along to help with your question. I imagine your MO will help guide the decision making. I hope that those numbers are just a blip. My MO does not talk numbers if he is watching them. I'm ok with that as I tend to worry too much. Again, welcome!
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@Sunshine99 - I am so sorry about your esophagus spasms and all that you have been dealing with. Onward to the next treatment and hoping it is smooth sailing and you can regain some weight, sleep better.
@Brutersmom - I hope Palliative care has some good solutions for you. It is terrible when the treatment creates such impossible side effects. I know it is exhausting and I appreciate how you have continued to work at this and advocate for yourself.
@bluesea20 - my oncologist doesn't rely on tumor markers but with certain patients, rising markers way above "normal" is an indication that something is changing. It seems like for ILC, tumor markers are more accurate and scans are less accurate. My cancer has been IDC. If and when my scans show new sites the process will be to biopsy the new sites (if possible) and make sure the cancer hasn't acquired new mutations or changed er/pr status. Your MO should guide you.
I started cycle 44 of Ibrance this week and have scans on Wednesday. As my scans were canceled a couple of weeks ago due to the cancer ctr not receiving the contrast in time, I need to go to a different location for these scans. I will be wearing my lucky socks and my special scan clothing (no metal!) .
@Believe60 - I am still overjoyed at your good news and hope you have a wonderful beach vacation.
@RK2020 - hope you are doing well on your current study or treatment.
@Chicagoan - I was just thinking about our coffee date and how wonderful it was to meet you in person in February! Hope you are seeing some great ball games and concerts.
I was in Palm Desert last week helping my elderly parents and boy was it hot! Not fun but great to see my parents.
I will check in after my scans….hope everyone has a good weekend.
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Thank you for the encouragement. I'm trying a couple of acid reducers in case the cough is caused by reflux. If that doesn't work we'll try a nasal spray for postnasal drip. I just want to sleep through the night in my own bed.
aprilgirl, my dad is not too far from your parents in La Quinta. Yeah, it's been bloody hot out there. My DH went out there the past two weekends to spend time with him. They're working on a hardscape plan for the front and back patios.
Resting up today for a birthday party this evening at a neighbor's house. It's about two blocks away so it's an easy walk.
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Good evening everyone! I've been away for a bit, but I'm back! I've been on Ibrance since Sep 2021, but it looks like my journey is done. I just had my quarterly scan on 21 July and it turns out I have progression in my left femur, pelvic area, left 7th rib, and my right hip. The worst is my left femur, so I'll be getting rads done there. I go on Friday to my RO to figure that out. I've been in some pain for awhile, it's really kind of felt like bone-on-bone pain in my hip socket. At first we thought it might be from moving and over-exerting myself, but as it has lingered for a while I'm glad to at least know what the issue is. My MO is on leave right now, but we are getting together on 17 Aug to discuss my treatment. I think my MO mentioned something about chemo being my next line, but honestly I was just in shock and don't really remember what he said. I've been putting together questions for the visit and I was just wondering if anyone has thoughts on the second line treatment? I saw that switching to fulvestrant and a CDK 4/6 inhibitor after an AI and CDK has been shown to be effective. I'm just worried he wants to put my on IV chemo and I really don't want to do that. Thanks for any ideas!
Also, I have ILC and my tumor markers were moving in the right direction for awhile. But they have started to increase of late. Sigh…..
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You might ask your oncologist to biopsy the bone Mets and check if it is PIK3 mutation positive. There is second line treatment of Piqray. Sorry to hear that.
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Sorry to hear this is happening to you. I was just reading about ESR1 mutation being common for women on aromatase inhibitors. Hopefully you MO will do some mutation testing before choosing your next line of treatment.
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KatyBlu, it's good to see you but I am sorry to hear you have progression. I agree with BlueSea and Brutersmom that I would want a biopsy of the progression to determine if the er/pr and her2 markers are still the same and if the cancer has acquired any mutations such as Pik3 or ERS1. If you have the ERS1 you could go on the new oral serd orserdu. Radiating bone mets is supposed to help reduce pain and I think get rid of the cancer spot on the bones.
I think you were trying to work a few more years until maximum retirement benefits would kick in so I hope you have achieved that or are close to it. If that is not the case, I am confusing you with another Ibrancer :)
Take care of yourself and let us know how this goes. If you MO is out of town i would see if there is another onc in the clinic that could get a biopsy scheduled so you could have that done and might have results before you meet with your oncologist.
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@Brutersmom , when I was scrolling to the most recent posts I saw a post of yours from the end of June that I had missed . My husband is similar to yours in that he is "supportive " but also doesn't like to acknowledge the "elephant" in the room . He talks about buying bigger boats and us living in Belize for 3 months when he retires in 5 years … I know I have been stable for 3.5 years but that can change at any time . So, you are not alone with a spouse that has extreme denial or rose colored glasses .
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katyblu - without an actionable mutation like ESR1 or BRCA then next step is typically Xeloda. I moved on to that about 6 weeks ago after Lynparza failed (and no good mutations to target) and its been pretty easy so far as a 'lite' pill based chemo. Its still chemo and has its quirks, but its not been bad. If you are still bone only, ask about a Guardant 360 blood biopsy to check for mutations, they are pretty thorough. I think some women do move on to Fulvestrant + CDK 4/6 but you may not get a ton of time on that if the CDK 4/6 is what failed in the first place, all while getting shot up in the butt cheek a bunch :)
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katyblu, I'm sorry you've had progression. DH is concerned that my stopping Ibrance will allow my cancer to progress. I was telling him about first line, second line, etc. I have scans at the end of this month, and we will see. I feel like my MO thinks that if my issues (swallowing, coughing, lungs) are not breast cancer related, then they're not her problem.
I KNOW there is stuff going on, but I don't know what else to do…
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Katyblu - I'm not on Ibrance, but I'm in a similar boat. I started Verzenio and Fulvestrant in April/May as first line treatment after becoming metastatic (on Letrozole) in January. I had scans a couple of weeks ago and it was about 2.5 - 3 months after starting the treatment. The scans showed most everything to be stable or healing, but also showed another couple of new spots on two ribs. For that reason, my oncologist suggested I quit these two drugs and move on to IV chemo. I was shocked and disappointed to say the least. I asked her about moving to another CDK inhibitor and she said that won't work, because the drugs are so related. Then I asked about Xeloda and she said that wouldn't be her next choice, but maybe IV Paclitaxol would be. She did say she could test for the ESR1 mutation and if that was the problem, I could try Elacestrant. While it looks like you were on your combo for some time, I thought that in my case it might have been even a bit too early for scans, but she said 2 months was enough. There is disagreement about that and some say you need 4-6 months sometimes to see if these combos are working. Also, it could be the anti-estrogen drugs that are failing you, not the CDK inhibitor. I became stage 4 while taking Letrozole. Now it looks like the Fulvestrant could possibly be the culprit here (if I am indeed progressing as she seems to think), so I'm wanting to do the ESR1 test. Cure-ious, who posts here has noted that the Poloma study I think, showed that when these CDK and anti estrogen combos fail, it is usually the anti-estrogen drug and not the CDK, so there's that to think about too. I was hoping to first continue with this first line a little longer to see if it really isn't working or if it just needs more time, and then to move to another CDK and/or anti-estrogen combo, but she said no to all of that. My next thought then would be Xeloda, but she also said no to that, and I agree with you wholeheartedly that it doesn't make sense to go from a first line treatment directly to IV chemo. I'm going to look for a second opinion. Maybe that's something you might want to do too?
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threetree, I’m a little surprised your onc didn’t want to radiate the two areas of your ribs that showed progression and keep you on the Verzenio and Fulvestant since everything else was stable.
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Hi Divine - The onc did reluctantly agree to another month on this combo after I asked to try and stay the course a little longer, so I'm doing that now, will scan again around Sept 1, but she will be out on maternity leave then and I will see a different dr there.
I too have been surprised that she's never suggested radiating any of these bone spots. I've also got troubles with some vertebral fractures that are getting worse (stable since the treatment), and I've seen where some people get some sort of cement put between their vertebrae to keep them stable and stop the "chain effect collapsing" that mine are seeming to do. I'm going to try and find out more about both the radiation and the vertebral stabilization possibilities. Usually when I ask her about things she hasn't offered, she just says something like, "We just don't do that." I haven't asked her about radiation or vertebrae cement, but part of the reason I don't is that I just assume I'll be rebuffed, although she did agree to waiting another month when I asked for that.
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Threetree your oncologist sounds like my very first oncologist back in 2015. I was on arimedex and he told me he never heard of some of the side effects I was have. Didn't seem to think anything was related to cancer and always pushed for chemo. I switched oncologist because i was not comfortable with him Someone who worked in the facility told me later that he tried to push chemo on everyone because that was how he made his money. I don't know if thatvis still true today. There are so many more choices now and more come out every year. My oncologist loves when I suggest something he will answer my questions and if he didn't know what I was talking about he would go to the medical library on his computer and look it up. I think having a new set of eyes next month will be good for you. Make a list of questions for the oncologist. Ask about some of the things discussed. I feel it is important to be our own advocate.
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Thank you all! I will definitely see if I can speak with someone to schedule a biopsy soon. I think that's the best course of action. I'm just really upset that I have progression already. There are so many of you that stay on Ibrance for years and years. I just really don't want to start going down the treatment lines. And I really, really, don't want IV chemo yet.
My other hope is that whatever I switch to has milder side effects. I have extreme joint pain that really inhibits my activity level. I feel like I walk like I'm 70 at age 43.
Edit to add: Aprilgirl, yes I am waiting on retirement. I have about 10 months left. Just trying to slow roll everything in order to make my 20 years :)
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Brutersmom - Wow, that was pretty bad of your first oncologist to be doing that. I know a lot of them own stocks in various medical companies, and I hadn't thought about anything like that for quite awhile.
Well, the visit note from the oncologist for last Friday's visit got posted to my chart today and I can say that she was more clear in her notes as to where she's coming from and I get her thinking a little better now, but I still have concerns. She is concerned that it's not very ER+ anymore and then I guess in that case, all the CDK's, and anti estrogens are no longer viable. She is apparently going ahead with the ESR testing that she told me she "could" do, so that will help with the mutation possibility. I guess her reason for going straight to chemo is because she thinks it is probably no longer ER+ enough to treat that way. Even if that turns out to be the case, I don't understand why she would do IV chemo before something like Xeloda. In this note that got posted she explained that Paclataxol would be good for non ER+ and that when I got progression on that, she would do another test (PL? something? PDL?) and then decide between Xeloda and Keytruda. She never explained a lot of that to me last Friday. She seemed to lean toward Keytruda in her note. I have a friend who has stage 4 lung cancer and she had a terrible time with Keytruda and is left with permanent damage, and an autoimmune disorder from it. She can't even wipe herself on the toilet or put her own shoes and socks on. She did say she's able to garden if she lays on her stomach and uses her hands in the garden.
I would love to have an oncologist who appreciated my questions and would seem to enjoy discussing them with me. You are very lucky in that regard. The one I have now does not seem to be one of the "be your own advocate" supporters. I've gone to her for years and she seems to have the mind set that she has a medical degree, I don't, and I should pretty much just accept what she suggests, because it is invariably "standard of care" and the current set protocol. I am definitely looking forward to talking to someone new next month while she is out on maternity leave for awhile, and will as you suggest, create a list of questions.
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