Ibrance (Palbociclib)
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candy-678, my bone marrow mets were found because I started getting big, dark bruises, nosebleeds, fatigue. My blood work was off as well. Very low platelets, hemoglobin etc... biopsy confirmed his suspicion.
Jill
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Lynn, I read and reread your post. Sobering indeed, but it sounds like you've got the right people on your team. Maybe I missed it, but is AA the course you'll be on for sure? Or are you still reviewing the other options? Either way I know you'll be prepared, and of course whatever thread you land on, you'll be followed by a contingent of Ibrance lurkers. Wishing you clarity and prompt resolution and relief.
Grannax, glad your tumor decided not to play hide-and-seek, and that you got a clean sample. Now you can get on the best treatment plan available.
Pat, anything special planned for tomorrow evening? Any particular color scheme?
I saw my MO this past week to review recent scans and health status. As many of you have heard me whining, I lost my voice a while ago, and the past couple of months I've experienced digestive issues. Lately, about 80% of the time I lose my meal. On the cancer front, I've got a couple of watch-list items, a bit of progression here and there, and a fractured vertebrae. On the other items, we're still tracking it down, but as my MO has a talent for doing, she warned me that there may not be an answer to the eating issues. She referred to it as paraneoplastic syndrome, which if I'm understanding it correctly, is not the cancer, but the presence of cancer and attendant treatment that causes various issues. I am getting an endoscopy to rule out anything obvious, but am also preparing for a mostly liquid diet. Which is a bummer, because this girl can eat.
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Ah, Joyner, your second opinion differs from the first! Did she say why she'd suggest Halaven over AA? Maybe she considers it stronger, or has a higher chance of working? Will they take a biopsy and get sequencing done, or was that already done?
Jaylea- Can it be due to high calcium in the blood? Hydrate, hydrate, hydrate...
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Cure-ious and Jaylea- Rachel Sanford, MSK doc, suggested Xeloda rather than Halaven (Xeloda is in tablet form rather than an injection) as a next step but said that AA was a solid option, too. She noted that I would not lose my hair on Xeloda but reviewed the hand and foot syndrome as possible SE. My Richmond onc (and his associate) wants to do AA. Dr. Sanford (MSK) said that she leaned toward going with Xeloda first (scan in 2-3 mo and then again at 6 mo for efficacy). If working, and if not too hateful, I could opt to stay with Xeloda. If unhappy/uncomfortable or unsuccessful, I could go to AA at that point. I believe, though I don't think that she said it, that she's trying to knock down the bone marrow mets. I am to meet with my Richmond onc on Jan 3rd to discuss and to choose a path forward. I read other strings and realize what a wuss I'm being. So many people on breastcancer.org have failed on multiple lines of treatment and are bravely soldiering on while I'm here whimpering and feeling sorry for myself. I'm getting myself straightened out.
Cure-ious, my ER, PR, HER2 status didn't change in the two years between those two biopsies. Richmond doc is going to send the slides off to Foundation One when they are returned by MSK.
Jaylea, I'm hoping that the paraneoplastic syndrome or whatever it is will sort itself out rather than your having to go on a liquid diet. This disease has enough impact on our lives without your having to give up eating as you like!!! I agree with Cure-ious: watch your calcium in your blood work! One of my early signs of hypercalcemia/very elevated calcium levels (which put me in the hospital) was nausea, though it was a pervasive/malaise feeling rather than active throwing up (until I was in the hospital). To quote Cure-ious, hydrate, hydrate, hydrate....
Candy, I guess, but am guessing, that they knew about the mets in the marrow because of the two bone biopsies.
50s Girl, endless thanks for the comments on Xeloda and the vote of confidence. We shall see in which direction I go. My DH and I intend to grill my wonderful Richmond doc and are likely to go with his ultimate recommendation (whether AA or Xeloda), as he has followed me for two years and knows my body and my reactions best. I do trust him, and Dr. Sanford at MSK wasn't pushing hard for one drug over the other but rather saying that she "believed" that the Xeloda would be her next step.
Hope, none of my three docs mentioned Taxol as an option. I'm delighted that it was successful with your bone marrow mets. Did you docs re-check for successful knocking down of the bone marrow mets? If so, how did they check for success? With another bone marrow biopsy? By own doc in Richmond has said that he may have to do those with some regularity since the PET seemed not to work but noted as well that bone biopsies were "notoriously unreliable". I like CLARITY!!!
Hugs and thanks to all of you wonderful people, and Pat, thanks for the prayers! I suspect that you have a direct line....
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Jaylea....Keeping you in my thoughts and prayers that the endoscopy will give some simple answers. Yuk on the liquid diet. Like you, I like to eat. I agree, hydrate as much as possible.
Lynn...My hemoglobin (and other numbers) dropped way down, to the point that he was thinking of a blood transfusion. He then did a bone marrow biopsy to check for mets. I've had a bone biopsy...no comparison to the bone marrow biopsy. Since the Taxol, my hemoglobin has been in the normal range (along with the other numbers. I presume, if they start tumbling again, he will do another bone marrow biopsy. I started my 9th round of I/L and so far, so good. I, too, thought Xeloda was for liver mets. as that was the drug used for a friend with liver mets. I can't keep up with all the information about these drugs. I just pray they work.
Hope
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Jaylea-You have hardly been whining! What a drag to not only lose your voice but now not be able to enjoy eating. I pray that it is something that can be fixed, and not another thing to which you have to adjust. Best wishes for the coming year.
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Jaylea, yes, it was a crimson and white night here at the McRees! Roll Tide! These games are going to be the death of my husband and me!
Love and Happy New Year, everyone, from PatGMc...Nothing can get this brave bunch of warriors down!
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grrifff, how is your fibrinogen level? I asked becaus you are the only one who had bruises other than my cousin.(she has bone marrow mets too). I think having coagulation problems is pretty rare for BC
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Joyner, you have not been "whimpering"! You have been an amazing support to us all and have listened patiently to a million of our stories stories. You have offered gentle compassion and kind humor that have bolstered many of us in our dark moments. This is a very tough moment for you -- your trepidation is 1000% natural and I'm would bet every penny I own that everyone on this board is glad you are sharing and cheerleading you on. I hope that you get clarity on Thursday on the pros and cons of your options and are comfortable in your decision.
Jaylea, you complain of 'whining" when you too have been a great support despite your own difficult struggles. Please keeping sharing and know we are in your court and eager for you to find answers.
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Penny, that's the nicest and most supportive thing you could say right now. My DH and I are in the dark as to what is really going on, and everyone seems to be tied up with holidays and not looking in my direction. Meanwhile, I'm not on any treatment, while they're all scratching their heads (or drinking eggnog). I also have no confirmation that the MSK doctor has followed up with my onc. Lots of trouble on Christmas Day (driving to NYC from VA) for no follow up. She had said that she would call him that day, but neither her office nor my onc's has confirmed (or denied) that that happened. Maybe I'll hear today. Thank you, my friend.
Happy New Year to all!!
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Here's the thing, Joyner. You going to all the trouble and through the stress and work it took to go to NYC and get a second opinion at MSK is like all of us went, too (but without all the work and stress and travel on Christmas day). You did all the work and we get all your great information reported back. I was reading one of your posts after your return on my phone and DH said, "what's so interesting?" I hadn't looked up at all in a while and I almost didn't then. But he needed an explanation so I gave it to him. There's this woman on my cancer forum who went to MSK in NYC to get a second opinion after the drug that I AM ON failed. She's trying to decide what to do next just like I will have to. You created a discussion that we have needed to have for a long time. You gave us all TONS of information to consider and took the brunt of the stress for us. You showed us how to handle this eventuality with grace and courage.
You are a real star, Lynn. Wimp? I don't think so. And I wouldn't expect any feedback from either doctor until Wed. They don't do holidays. When we go through one of these difficult situations, we always forget to enjoy TODAY. Today, even with all the stress, is still a day to savor.
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Joyner if you're whining then I'm joining the club. I start AA tonight, with some fear and trepidation. But, at the same time, I know I've gone the extra mile to get all the information ( liverBX) I can for my future TX. I'd say you went the extra hundreds of miles to get your information. But to still be confused must be frustrating. Till you have a firm plan, I think you'll be frustrated. So, here's to a new year where your docs communicate, share their thoughts/ reasons clearly with you and DH. When it makes sense to you, you will know it's the right path..
I saw that your liver BX came back the same. Mine might, too. I think I will be disappointed if it does. I think my MO plans to send mine to Caris this time. But, it takes so long to get back. ,
Happy New Year to the Ibrance dancers and to those of us who have to learn a new dance. I'm sure my new friends on AA thread will help me learn the new steps to their dance.💞
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None of you are whiners! We all do the best we can - I don’t feel like a warrior or very strong, I just do the best I can and some days are better than others. This is scary shit and as we all know by now not an exact science, there are not always clear cut answers. And having anything happen around the holidays is horrible - I’ve given up trying to get a hold of anyone until later in the week. I’ve had the schedulers call to schedule some tests but the orders are wrong and no one around to help. My heart goes out to all of you, big hugs, hoping we all get the best news we can in 2019. Love
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see Joyner! 👍
One other thought — I remember reading at some point that Xeloda tends to be somewhat more effective for those who are NOT er+. I don't know that I would categorize your 50% as “low" as you did but perhaps that has something to do with the MSK doc's preference ? Maybe a question to ask?
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Grannax, good luck with the AA tonight. Those first pills are always so scary.
You girls are the best. DH and I have been reading/studying my scans for 2018 and discussing. We have particularly compared CTs of abdomen/pelvis, since the bad MRI in December was for that part of the body. We have figured out (we think) a number of things. Since you make a good point that this may be good information for all at some point, here goes:
1) For two years, I have had for the most part only CTs (with or without contrast or both) and the two PET scans, both of which were in 2018 (April and Oct). I was diagnosed two years ago with MBC, and except for two nuclear medicine bone scans as "baselines" and two PET scans, all have been CTs. No other MRIs, except November 12-7 when they were checking for brain involvement (negative) and the hip MRI on 12-13. The two PETs showed me essentially NED. All CTs for two years until November showed what appeared to be improvement and only sclerotic mets. I was a star Ibrance/Faslodex/Xgeva patient.
2) It was the hip MRI on Dec 13th which picked up, "Bone marrow: Diffuse osseous metastases.....In comparison to previous CTs, the extent of disease is much greater and only a portion of the metastases are sclerotic".
3) Obviously there is a reason why my onc sticks primarily with CTs and PETS. It was an orthopedist who ordered the MRI for my hip rather than my onc. My onc must, I assume, think that CTs and PETs are better indicators, or perhaps they are just less expensive?? I don't know, but I'm going to ask him.
4) THEREFORE.....Either the hip MRI is wrong and the CTs and PETs correct (wishful thinking and entirely unlikely) or:
a) the PETS in April and October were accurate (I was essentially NED), and this cancer has picked up speed and aggressiveness quickly since early October (I had that bout of hypercalcemia in mid-November, which started all of this recent scanning and discovery) or
b) the PETS in April and October were wrong, and this cancer has been growing (and Ibrance failing) since early in 2018 (I had a good CT on 1-2-18).
This will be way more information than some want, but it made sense that everyone is mentally preparing for some sort of future change. Scary that this documentation appears to show that scans can miss important information and thus leave you thinking you're reasonably "safe" for a while, when you're not. MSK onc said that about reliability/unreliability of scans, too, though she noted that it is more common for scans to be tricky with lobular than with ductal (mine) carcinoma. She wants to repeat the PET to confirm working/not working (waiting to hear on that, too).
In any case, still no response from anyone, and I'll have to wait for my appointment on Thursday. DH and I are also seeing a radiologist on Wednesday to discuss the possibility of some palliative radiation on my somewhat painful left hip (which has gotten better with Tylenol, etc).
I'm ready, I think, to be brave and do what they say, but the pieces don't fit. I want them to know what to do and to be decisive. This does not mesh well with my personality type.
And on a final note, you all can't see me, but I look entirely healthy. Good color, etc. Except for a bit of hobbling, you wouldn't notice anything.
We shall see. Happy New Year, folks-
xoxox
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It's hard to know what to pray for when so many of us are experiencing the stress of not knowing what's really going on in our bodies so I will pray for peace. I am always encouraged by the courage I see in you and my other survivor sisters. I don't hear whining. I hear concern for yourselves and for the rest of us. I also know that your concern for yourselves is all wrapped up in concern for your families and how this affects them. God bless them. God bless you, my sweet friends. May the new year find researchers more inspired than ever to find a cure for us.
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Wishing all of us an upcoming year of peace and MUCH HEALTH!
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Hi All, I just wanted to talk about my mother who was on Ibrance and Letrozole for two and a half years and did great. Now she is not doing so great. I wish we would've had a plan for when the Ibrance stopped working. We didn't research anything and my mother was put on several drugs that wrecked her body. One in particular was Afinitor and I wish she had never taken it. Before Afinitor, my mom was on Faslodex, which didn't help either, and I know for a lot of women that drugs works pretty well. I don't know if this is because she has long term effects from the Ibrance or what, but her GI tract is a mess and she can't walk, breathe well, or keep food down. She also has a cough, which is likely from the Afinitor. I know everyone reacts differently to the drugs, but I just wanted to say all of this because I wish we would have prepared and had a plan in place. We feel lost and it seems even the doctors are confused. Has anyone heard of Ibrance causing long term GI tract problems?
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Joyner and Jaycee, I had the EXACT same discussion with DH today. He asked how my friends on BCO are doing and I told him about Joyner's journey. (Lynn, I think I just named your new blog!) Funny how we all swirl around each other and come together in perfect harmony just when we need it most.
Adding to Pat's prayer for peace with a prayer for clarity in 2019. I'm raising a glass to all of you (and I mean every single one of you, posters and lurkers alike) with my family's traditional Irish toast of Slainte!
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Joyner-- I'm sorry to hear about the bone marrow mets! This journey we are all on is unique to each of us and yet we all understand the difficulties. We are all strong to continue to do battle. As far as Xeloda, here's some varied information. I know a couple women with colon cancer that have been on Xeloda for a long time and do very well. When I first had mets to ovaries they put me on Xeloda and Taxol. Xeloda has a compound in it called 5-FU that requires the DPD enzyme (in your body) to tolerate and process. About 5% of the population lack this enzyme or have a big deficiency in it. I ended up in this 5% of the population. This causes all the side affects to become quite great with the Xeloda and can hospitalize you. I had the hand & foot syndrome and I developed a systemic infection. They took me off of the Xeloda and I can never take it again. I worry that if I had to change therapies, this is now an option off the table. I do hope that you find the perfect therapy for you! There are so many options that I know you find the right one. Do keep us posted on how things go. Happy New Year!!
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StronginTexas, I don't think many long-term effects are known for Ibrance, since it's only been around for about 4 years. I do know that the reason we're told to drink lots of water with it, is to flush it out of the system as quickly as possible after the medication is absorbed in the stomach (I know that's not scientific, but it's the explanation that makes sense to me!). Quite a few of my onc's patients can't drink enough water - she's always saying that she stresses the importance of it, but a lot of women don't like it or just can't make themselves drink so much! I try really hard to drink a gallon a day on my "on" days; the last thing I want is that toxicity sitting in my system!
I'm sorry your mom is struggling so much. I think that having the Ibrance fail is the biggest worry for most of us... I know it is for me (in my 19th cycle now). I wish I had some advice, but I was diagnosed de novo, and have only ever taken the Ibrance/Letrozole combo, which has worked remarkably well... so far.
May I ask where your mom's cancer metastasized to? Maybe that's a key to finding the right "next best drug". I know bone mets differ from liver mets, etc., in what works best.
Wishing your mom healing, and peace for you all.
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For whatever it's worth, when it looked like I'd had progression to my liver last year my MO recommended a Ribociclib/Faldodex trial. Happily an MRI later showed that I was facing a false alarm. I am about to begin my 28th cycle on I/L. My impression is that Falsodex,alone or in combo, will be my next line but perhaps that has changed. My MO has been quite optimistic about the efficacy of future lines and I hope others take heart that there are many possible treatments. Ciaci like you I was diagnosed de novo.
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Penny-78, I am close behind you, starting cycle #27 of I/L in a few days. My MO said Faslodex will be next when needed..just not sure if by itself or in combo. She initially said it would not be verzenio. Not sure why, but will ask later.
My liver MRI is next month to look at two new cysts, MO suspecting just benign cysts. We will see, but we have a plan just in case it is progression.
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SandiBeach I remember our comparing notes a few months ago. Nice to hear from you. I know it’s much easier said than done — but try not to worry too much
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Happy New Year to all.
I go for my routine CT today. Praying all is well. I started Cycle 13 of Ibrance this week. It sounds like I am still early in the Ibrance Dance compared to others. But one never knows how many cycles we will get from this medicine before going to the next one. And as others have posted, how do you know what the next step should be.
Joyner- Praying for you as you try to get answers. I hate that the scans are so unreliable and leaves us guessing with such a serious disease. And I know what you mean about "looking healthy". I may 'look' healthy but I feel like things are not good. Maybe it is just Satan that makes me feel that way---to mess with my mind.
PatgMc--My prayers are for peace of mind and body for us all.
Hugs.
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Happy Healthy Healing New Year everyone! As I am reading back through the posts I realize that you gals are 'rocks' - solid, unyielding in searching for answers (that apply to many of us), supportive and awesome - not one of us whimpers or whines unnecessarily, we are just voicing the pain and frustrations of this unwanted journey! Thank you for posting all the things you do and discover, I am going to go back through my ct and bone scans prior to my next set of scans January 9, as I have some questions regarding my pelvic area that I hope will be resolved then. I wish everyone comfort and peace as we forge along - together we are strong! Janice
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OK, your friendly money person here again. PAN foundation has money in their MBC fund right now. They also have a new service called FundFinder where you can sign up and they will send you email when a fund becomes open (has money). They include other foundations, not just the PAN Foundation. I just got a message this morning that PAN has money. I got a new grant from PAN in Dec. and also got approved for assistance from Pfizer. It was all caused by weird timing and I still have to decide which to use. A very good situation to be in.
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Good afternoon all
Happy New Year 2019 prayers and wishes for the best for all of us. Praying for a cure
I’m on Ibrance cycle 19. I am grateful for your thorough post Joyner and need to review all of my PET scans MRI’s CAT scans. My next Onc appt I want to discuss options for when Ibrance stops. The updated study I read says the average time is 27.9 months. No matter what as we tick off a month of our “new normal” we are headed into new territory.
Thank you all for sharing and caring this past year.
Tanya
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Tanya, I love seeing your posts. I'm with you in praying for a cure, not just for MBC but for all cancer. I think "they" are getting close, closer than ever, and with their clever ideas and super computing power I think they will unlock it. Hopefully soon, (I selfishly say) but I fervently pray it will happen in our children's lifetimes.
Joyner, I'm reading along and hoping you soon have the best treatment regimen. Thank you for posting about this unexpected twist.
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does anyone know any more about Alpha Tau Medical and their new treatment for cancer tumors? They call it DaRT. They're from Tel Aviv but said they're working with cancer centers like MSKCC and M D Anderson. Their early clinical trials sounded very promising.
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