Ibrance (Palbociclib)
Comments
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amarantha....excuse me for being nosey but why are you having a blood test at day ten or eleven of the Ibrance cycle? It's usual to have it after the one week break at the end of the cycle, i.e. day 28 of the cycle. Unless you're having it for another reason? I'm sure you've mentioned it further back, but scrolling through all the posts to find the right one is hard work so did you say this is your first cycle or second cycle on Ibrance? I'm just trying to work out at which stage I imagine mine would be the highest. My trial nurse explained to me that our bloods tend to lag behind when it comes to starting and stopping Ibrance, meaning that at the end of the cycle the neutrophils go lower up to a week after stopping it and they go higher several days after starting it again so it's possible that could explain why yours is high at the ten day point. I'm just guessing so don't take this as gospel. If it goes higher because of infection (and I guess it might) why isn't the nurse taking it seriously? My trial nurse takes any slight suspicion of infection very seriously indeed as we can become very ill from it very easily. Not that I want to frighten you but it seems so strange that she's saying it's nothing. Oh, I just checked your dx and it seems this is your first Ibrance cycle. Is that correct?
Thanks JoynerL...I'll read that article with interest.
Speaking of fatigue coming free with every bottle of Ibrance, I certainly hope so because, if it isn't, I'm seriously in arrears with my payment hahaha!
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Dear Leapfrog, I am very glad you are "nosey" - it is something I need, I admit, just to talk about all this. Yes this is the first Ibrance cycle, the oncologist scheduled me to have a blood test every thursday, the nurse calls every thursday, to give the okay to continue taking the Ibrance based on the blood test. I too think it is strange that high neutrophiles is nothing, and I questioned her several times about this, she just said the numbers go up and down. I also asked her to pass a message to the oncologist that the cancer is flaming and moving and growing fast. I feel like a house fire that is being told not to worry, it will calm down, while they just have a bucket and a few drops of water. She just said 'you've only been on the new treatment for a week". I wanted to say, I know ! and please tell her its flaming. Lather rinse repeat. At no time did she say she would transmit the message. Sulking here in my little corner. Its time to change oncologists. AND I realise it is not really the oncologist the problem, nor the nurse, nor the hospital, but simply the fact that with metastasic cancer, they just don't even try to make the cancer back down, they're just biding time, waiting until it gets worse to change treatments, where I would like them to make a tiny effort to make the cancer BACK DOWN, and then give me something to hold it there -- I'm having a really hard time with accepting there is nothing they can really do accept try this and that and let it get worse and worse until I die. I guess everyone here has been through this, yes ?
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Amarantha...I don't know why Claritin works, but I know others have taken it and swear by it for the aches and pains.
Ciaci...I'm going to take the Claritin exactly like you! She did say I could take it on a daily basis if I wanted. I hope that isn't necessary, but nice to know I can.
Cling...Welcome! I will hope and pray that the Ibrance/Femara combo works wonders for you!!
Jaylea...Thanks! I am sure hoping Taxol does a good job.
Faith...Praying for you and waiting to hear "good" results from your scan. I can imagine the roller coaster you are on just waiting to hear from your doctor.
Leapfrog...I try to stay positive...I don't think I'm strong, though. And, staying positive is a real effort for me. I do pray "a lot"...for myself and each and every one of you gals.
JoynerL...And yet, another interesting article. Thanks for sharing.
Well, today's job is going to be calling to set up an appointment to get fitted for a wig. I'm going to look at it as "fun"...although, I sure wish I didn't have to do it.
I will be closing the lid on my Ibrance/Femara container today....I'm wondering if I will feel any different this week.
Have a wonderful day!
Hope
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amarantha...I find that very strange and, as far as I know, it's unusual to have a blood test every week and to base whether to continue with Ibrance on that but perhaps someone else will chip in here who has had a different experience. I'm on a trial and the trial protocol is very strict and, as far as I know, is the protocol for using Ibrance. However, I wouldn't like to say I'm completely correct and there might be a reason why your oncologist is following a different pathway. I do know, though, that the correct way to administer Ibrance is three weeks on and one week off and, as I said, a blood test at the end of the week off. If the neutrophils are too low, that's when they decide not to start a new cycle but for the patient to take another week off and have another blood test at the end of that week. So far that's what has happened with me every cycle...a blood test on day 28, after one week off, at which my neutrophils are always too low to start a new cycle so I have a second week off and a second blood test, at which my neutrophils have managed to laboriously climb up to the magic figure 1.....usually about 1.3. They like it to be 2 or not far under but I can't get there. After my seventh cycle on the 125mgm dose, my oncologist was able to drop my dose to the 100mgm one as my neutrophils were less than .5 after the one week break. He has told me it will take several cycles for me to reach the ideal regime, which is three weeks on and one week off. I've explained all this in detail so that you can understand the "normal" protocol for Ibrance use. As you can see, the numbers do go up and down but there's a distinct pattern and a reason for that pattern. It follows the expected outcome when using a targeted therapy like Ibrance and I really can't see the reason for a weekly blood test when, after all, the aim is for us to get maximum use out of Ibrance.
I find it hard to accept an oncologist just biding time and not using every means at his or her disposal to bring you as close to normal as possible. I don't that is a normal attitude for an oncologist, whether the cancer is metastatic or not. It certainly is NOT the approach mine is taking and, if he were, I would be looking into changing oncologists pronto. I don't believe for one minute that we accept this and wait to die, not at all. That is completely the wrong approach. I've been told that despite all my mets I have many years left and many treatments left to try and I choose to believe that with all my heart and I won't ever just wait to die and no oncologist could persuade me otherwise. I don't think we have all been through what you're being put through, amarantha sweetie, I really don't and that's why, in your heart, you find you cannot accept it. You don't need to and you shouldn't. I feel very strongly about this. We all have a right to fight this disease with all the drugs that are available. Please don't let yourself give in. Get up and fight for your right to live and to live for as long and as well as you possibly can. Sending you all the love in my heart. Please keep in touch
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Amarantha, I feel your pain (and your frustration). I'd be ready to throttle anyone in sight involved in your treatment. Is there any option for changing oncs, and do you know to whom you might go? You surely need someone knowledgeable who is paying attention. I had to change oncs after three months, as I realized that mine (to whom I had been going for 10 years before my metastasis) just wasn't paying attention. I had to prompt her when I needed blood work (and even for the Faslodex loading dose!). She even forgot when I was coming in for her to give me my first scan results. Good doctor but totally on overload. Which reminds me: have they scheduled your loading dose of Faslodex two weeks after the initial shots?
I believe that it is important during your first cycle of Ibrance that your blood be tested often. They don't want your counts to tank and put you at great risk. After the first month, I expect that they will go back to every 30 days. I may have the specifics wrong, but I think that is generally the case.
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Amarantha...My schedule for blood work with the Ibrance was the same as Leapfrog's....I think I would be seeking a new oncologist. Non-caring physicians are a No-No in my book.
Hope
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I'm pretty sure I remember reading on the Ibrance paperwork that blood should be tested twicw during the first cycle. My onc did not bother to do this but my counts were never down enough for a delay or a reduction. It can take months for the Ibrance to work so maybe that's why she is not feeling the urgency. If you have a message for the onc she needs to relay that whether she thinks it's important or not. Do you have the oncs email? I would try to talk with her directly about your concerns. I do know that frustrating feeling that they are not doing things quick enough and have often though they don't care because I'm going to die anyway. I've had Mets for 5 years and I have relaxed about it a lot since the beginning.
For the Mets that you can see through the skin, have you considered any kind of topical treatment? Like maybe frankincense oil or castor oil packs? It's alternative but I am curious about that stuff and would probably try it out. Just on one small area to start.
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I had three blood tests, two weeks apart, during my first and second cycle (Cycle 1 Day 14, Cycle 1 Day 28, Cycle 2 Day 14), so my onc. could tell how I was responding to the Ibrance. Numbers were good, so I now get blood work every cycle, on day 15 (worked out better than day 14, with my onc's schedule), which is also the day I get the Xgeva shot.
Dr. says she compares Day 15 numbers in each cycle, and can tell by the numbers that I'm rebounding well at the end of each cycle. I guess each doctor does it the way they feel comfortable. I'll now see her only every three months, with the lab visits in-between.
I'm at Sloan-Kettering here in New Jersey (USA), and I must say, they have an amazing system set up to contact the doctor. Their patient portal has a way to send messages to the doctor, her staff, the lab, etc. They respond to me within a couple of hours, and the doctor herself has called me back when I message her directly. They have addressed every concern, and attended to every comment. I love them all!
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My MO had me do weekly blood tests for cbcs while I was on the 125 mg of Ibrance. Every other cycle my white count was too low and I'd get an additional week off. When I switched to 100 mg, he changed it to monthly.
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Amarantha,
Bon Jour! Try to hang in there with the Ibrance. For many women, it has made the cancer back down. Maybe not forever but for me, the Ibrance shrunk my tumor and most mets disappeared so my health and quality of life got much better. My oncologist has kept me on the high dose even when my blood counts weren't great. Her thinking was that as long as I wasn't getting sick, we should stay the course. I had bimonthly blood tests in the beginning. After a few months, it was just once a month. She has encouraged me to look at MBS as a chronic illness, not a death sentence. I don't like having a chronic illness but for now, it beats the alternative! I hope that you respond well to this treatment and that things get better.
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Dear Leapfrog, Joyner, Nonahope, thank you so much for sending all your love and support ! that is huge ! I feel myself crumbling (in a good way) when you say that, I've been so strong for so long, and protecting so many people from worrying about me, and now, its just hard. -- Leapfrog, I read your post many times, and having been on the fence about soliciting another opinion for so long, am now realising I cannot live with this amount of distrust. I just wrote a letter to the Curie Institute in Paris to request an appointment, and also have an appointment with my regular doctor to discuss how we are going to organise this. Anyhow, I can't find any other way to calm myself and my boiling blood down, it's take action, or eat cake. And since none of the kind of cake I like is in the house, I'm taking action. Thank you so much for your strong words of encouragement, they made me brave enough to act.
As for the blood-tests, yes I think my oncologist wanted to follow the white blood cell levels very closely with the weekly blood tests since I had been on Afinitor for the last ten months and my blood levels have been pretty low for a long time, also had a bout with pneumonia last summer that almost removed me from the planet. But I am sure she intends to reduce it to once every two weeks, and then once a month or even less frequently if things level off. It just threw me off that the neutrophiles were high instead of low, and like you, I was wondering about an infection somewhere (particularly since the drama of the pneumonia last summer).
Joyner : thank you so much for your strong reaction. Could you please come here and throttle all those people ? It would make things so much better ! Yes indeed they have scheduled the shots : I am lucky to have an independent nurse who comes to the house to do that.
HLB, I have been wondering about topical treatments - the tumoral tissue is growing on the outside of my skin, and seems worse by the hour- I have not heard about frankincense or castor oil, but did learn about a skin-met fighting cream (from this website) which I have asked my doctor about, I have asked him to look into the feasibility of using it and be my advocate in asking the oncologist about it.
Ciaci I am envious of the caring way in which your system allows you to contact the doctor and address every concern. I would so long to be able to get my messages and concerns through instead of feeling beaten back like a fly each time I try to communicate.
Cive : where do you live ? I'm thinking the weekly protocal for bloodtests is maybe a French thing.
Chicagoan, I really like that idea - think of it as a chronic disease rather than a death sentence. For now I have only thought of it as a death sentence, and a really close one at that. I like the hope you give me for Ibrance. If it has made people's mets go away, that's huge.
Wow thank you, all of you for such tremendous support, and responding to the sound of whimpering in the corner. LOL. Lets get this ball rolling. And begging the scientific community to get on the ball with more cures !
love
Amarantha
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Amarantha, Chicagoan said it best and I echo her every word. I had bi-monthly blood work for the first few months but now a lab test is done on my week off to make sure my numbers are good enough to start a new cycle. I have been on 125mg from the start and am now in my 19th cycle. My onc has also urged me to look at MBC as a chronic illness which we will treat every way we can. My mets (extensive bone and liver) are all resolved now with only some slight activity in my lymph, so we will remain on this regimen as long as possible. It can happen to you and you can live an active life. Hang in there and let us all know how you are doing. We are pulling for you!
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We all need to fly to France and give Amarantha a huge group hug....well done, girl! So glad that you're ON it!
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Way to go, Amarantha!!! Proud of you!
Hope
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Joyner - I'm catching up on some of the threads and saw your plans to go to Vermont for your son's wedding. Reading your post I can feel your joy. When I was originally diagnosed 10 years ago my prayer was to make it until my youngest child turns 18. He turned 18 last month - and of course I have reset my sights much longer term! My oldest son is 23 and has a lovely long-term girlfriend. My hope is to not only attend their wedding some day healthy and happy, but to spend years as a doting grandmother. These milestones are very special celebrations to those of us with MBC. Have a wonderful time. Jaycee - gorgeous wedding photo. Thanks for sharing!
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Hello everyone I feel like I know you all I’ve been following the thread for months ha maybe mor the han a year the reason as my old oncologist had me on Ibrance/Faslodex but at th first sign of TMs jumping she pull me from on it. Then she put me on Xeloda with the HFS being horrible. Then I switched oncologists and the new one put me on Abraxane which has served me well but now I’m there’s been progression. The new oncologist is willing to give Ibrance/Faslodex another fighting chance so he sxheduled a CT scan on Wednesday and Friday will meet to discuss the results and establish a course of action. If he decides to go back to Ibrance I’ll be back actively .
Hope everyone has a pain free se free weekend.
Aurora
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Aurora...Ibrance/Femara failed me after 4-1/2 months. I will begin IV chemo of Taxol next week. I'm staying on this board to cheer on these wonderful ladies that I've met in this short time. I will be cheering you on!!
Hope
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nonahope, I had four years with no evidence of disease after Taxol/Carboplatin. You do that and then line up for the immunotherapy we all expect to get. I'll pray for that! Be sure to get some Vicks Vap-o-Rub for your toenails, that or an OTC anti-fungal. You might rub it on your fingernails too. No one told me this and I got a fungus under my big toenail. It finally was cured but it took a long time for the nail to recover. Wish I'd known you could prevent that!
Faith, you're on my mind, dear....and in my prayers.
Auroaya, what about trying the new drug similar to Ibrance that just came out? It's pretty much free for a year. The name has escaped me. Actually, there are two. Wishing you the best as you switch treatments.
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Amarantha, I know you have already received lots of good advice, but I was wondering just how high your white counts are. Are they above the normal range or just higher than they were? I ask only because my blood counts did really whacky things during my first cycle of Ibrance. They were checked weekly because of that fact. After one week the neutrophils and WBC were down, but they bounced up a bit after two weeks. My MO shook his head and remarked that Ibrance never ceases to surprise him. My counts really tanked during the third week, and my dosage was reduced for cycle two once counts rebounded to acceptable range. I have to agree with Chicagoan. You should not give up hope. Although most MOs would rather see stability than progression in stage IV patients, they aim for improvement. When I had scans in June, after 9 months of Ibrance, two of my liver tumors were no longer seen, and the third was much smaller and less visible. My bone mets showed some healing. My MO was excited as he gave me the results. I realize that things can change at any time, and my MO monitors me closely, but heck, I am going to enjoy life in spite of my diagnosis!
Aurora, I am sorry to read of your progression. DANG IT! I hope your new treatment plan works for a long time.
Hope, I look forward to hearing that taxol knocks out those nasty cancer cells. I am happy that you will continue to post here for us.
Hugs and prayers to everyone, Lynne
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Thank you all for thinking of me. Talked to my MO late today and it seems like the lung needs to be looked at more closely so I believe I will have a broncoscopy and biopsy to see if the cancer is growing again. The report said that it could be inflammation, its unclear. I could wait 8 weeks to see if it grows but I think I should go ahead and get a final answer. I'm not good at the waiting game. I had a broncoscopy when I was first diagnosed and I don't remember it being awful. Anyone with recent experience here? I could use a few prayers to help me with this decision and for a good outcome.
Hugs and prayers for everyone,
Faith
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Faith. waiting for 8 weeks to see if it is growing sounds awful. Far better to know soon, and plan accordingly. If it Is growing, you don’t want it to grow for another 8 weeks, and if it isn’t growing, why worry for 8 weeks? I will hold you in my prayers
Amaranths. I am not in a clinical trial but I am on a special access program funded by Pfizer. I get blood work on days 14 and 28. If my neutrophils are low on day 28 I get another week off, and bloodwork on day 35. If my neutrophils are ok, I start again. I make sure that days 14 and 28 are Monday’s so that I can go to the local lab and not have to go all the way across town to the hospital lab. Thus I sometimes have bloodwork two weeks in a row. You can check the physician’s prescribing guide n the Ibrance website. It lays out all this protocol very clearly. I continue to be amazed by the changes to the protocol that people report here. I am glad that my oncologist follows the protocol to the letter. This was the protocol followed in the clinical trials, that produced the data showing hat a Ibrance plus an AI showed impressive gains in progression free survival.
Jo
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Faith, I wouldn't want to wait 8 weeks to find out if it is growing. Nope, don't need those 8 weeks of extra stress or additional growth opportunities. I will keep you in my thoughts. I am praying for guidance in your decision as well as a good outcome.
Hugs and prayers from, Lynne
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Amarantha....putting aside all the differences in our experience with blood work on Ibrance because it's miles too confusing for me now I've read all these posts, the main point that comes out for me is by Chicagoan as that echoes my feelings on MBC exactly. It's a chronic illness, not a death sentence, and we LIVE with it. The reason I emphasise the word live is because it's entirely possible to live a good life if we have the right attitude and that attitude is to find joy in every moment that we can and, even though some days joy is hard to find, there are things we can focus on to help us find it. The love from each of us on these boards is a big highlight in my life. There's always someone offering support and love despite their own worries and I second JoynerL in all of us taking a trip to Paris for a group hug in front of the Eiffel Tower! Just the very fact that my cancer was found in time for me to start treatment on a trial of Ibrance/Letrozole is enough to take my breath away because when we eventually found our way to the trial, there was only one more place on it and they gave that to me. My previous oncologist had told me that I wasn't suitable for a trial and was going to use Ibrance for three months as a last resort if I progressed and that sounded very strange to us so my husband contacted Pfizer to ask about it and was directed to the doctor managing the trial I'm now on. I'm so grateful that this happened and, for me, it's an omen that things will go well.
To be honest, I'm happier now than I've been for years because I was so terribly ill for about eight years and getting worse and I was being ignored by physicians, who simply ran a few blood tests, told me my fatigue and weight loss were depression and offered me anti depressants which I refused because I knew I was desperately ill, not depressed. When I refused they told me they couldn't help me and at that point I gave up trying to find a doctor who would listen to me. If six different physicians wouldn't listen who would? There were no symptoms to show I was growing a massive tumour in my right breast and that it was spreading throughout my entire skeleton so I tried to cure myself by living a healthy lifestyle. By the time I developed a second tumour in my left breast which, unlike the one on the right, showed itself immediately, I was so ill I couldn't get out of bed. Some of the girls here will be tired of reading this story but I tell it because I like to think it will help someone to take heart and not to give in to despair. I'm now happier and feel healthier than I have for three years because the cancer has been cut out, cancerous lymph nodes removed and treatment is holding me stable.
There's a lot to live for. There always is.
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Hi everyone and Amarantha....I owe you all an apology and I'm very sorry that I was so sure that I had blood work only on day 28 when I first started on Ibrance/Letrozole. I just looked at the website and it jogged my rather untrustworthy memory that yes, I did have fortnightly blood work at the beginning. It came back to me that I always had Grade 3 Neutropenia (I now have Grade 4) and that on one cycle I was taken off Ibrance halfway through the cycle.
I really do apologise for leading you astray, Amarantha. I'm terribly sorry. I can only say that because I'm on narcotic pain relief my memory is faulty at times, yet I'm so sure I have it right until I really think about it or look up my results file.
So sorry everyone. I think I need to change my motto on my treatment summary. I do regret that post.
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Leapfrog, don't worry about it. We all are having memory problems. It frustrates me and scares me a little. I have to scroll back and see who has posted what comment because I can't remember when I am replying.
Unfortunately I have another UTI. I was able to get into the Dr quick for an antibiotic this morning, but tonight I feel horrible. I try to be so careful and clean but it just happens. I also saw yet a different PCP as my own was not available--again. My own PCP has never seen me since my dx (May 2016) even though I have been in at least 6 times for care that does not require my onc. Every time I go I have to explain my care and regimen to the nurse and sometimes the Dr. I think it is time I found a different PCP...
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Into the light lol sorry some days it's hard for me to keep up. So yeah I see that now..
Nonahope. Glad you are staying on here and sorry it failed you. Do you know how they are doing the x-geva? Mine hurt pretty bad in my arm hence the port and doing an infusion. But it is suppose to help strengthen your bones from the cancer weakening it so you don't have compressed fractures.
Still tired with the ibrance had a few good days and a few rough ones too this week just trying to stay positive!
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JoynerL- yeah my oncologist told me they can take a sample of your tumor and map out your treatment and configure what will work for you and prolong our lives. I really love my oncologist and glad to have her helping me through this. It's so fascinating what they can and are doing to help not only us but others.
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Leapfrog, we're ALL forgetting things...we're stressed out, and we're trying to help ourselves and each other! I, too, have to scroll back, and half the time I can't find what I was looking for. There's a wonderful sense of loving community here, and I've decided that if I forget to wish someone the very best on test results or congratulations on a victory, that person will realize that all of us are pulling for each of us. To those who are new here, there is also terrific information to be gained and insight into what is going on in research and development. And good questions for your doctor if something seems amiss to others.
Faith, I had an endoscopy a year ago, and it wasn't bad at all. The anesthesia seemed similar to that of a colonoscopy. The only unpleasant thing was when they numb your throat and then ask you to swallow something (can't remember what). I was gently warned by the nurse that I might feel as though I were choking (but would not be), because of the numbing in my throat, and I surely did...but it was brief. And then I as OUT.
I agree with all (don't want to scroll back again to see who!!) that you should figure this out rather than wait for 8 weeks. Better to know, especially with the holidays upon us. Good luck, my friend...it's going to be inflammation!
xox
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PatG...I'm hoping the Taxol takes hold of those cancer cells. Taxol will be the only drug in my cocktail, other than Benedryl, steroids and anti-nausea meds. The NP did warn me about nails! It feels overwhelming for me to think I have to go every week for 3 weeks, then off for 1 week and back at it. I'm trying to stay positive, convincing myself this is just a chronic illness. The first time around with chemo, it was just the opposite. She said this is nothing like the chemo I initially had...which is why you only need 1 week off, rather than 3 weeks. I hope she's correct!
Faith...My prayers are with you! I agree, why wait for 8 weeks. I would just worry that entire time and make myself crazy. I wouldn't wait on this one. I hope you can get in soon and get it over with.
Leapfrog...As always, your posts are so very encouraging. And, thinking back about the blood work, I did have mine tested twice during the first cycle....so, see...my mind was playing tricks on me too!
IntoLight...So sorry about another UTI. I've only had one in my lifetime and I hope I never have another. Talk about OUCH!!!
Cchilders...I'm not even sure about the X-Geva yet. The NP mentioned it, but I will see the onco on Thursday, prior to starting the chemo infusion. He had mentioned it to me a couple of months ago and was going to check to see if insurance would cover the cost etc. Can you get the injection in your port??? I do have one and that would be the way to go if I have a choice.
Have a good weekend, ladies. Sending healing thoughts and prayers to all.
Hope
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Aurora, I don't know how long you were on ibrance/faslodex, but it seems like maybe you were taken off too soon. My markers went up the whole 16 months I was on it, but scans showed continued improvement. Also it seems that it can take up to 6 months to show that it's working. I would definitely want to try it again. There's also the new one, Verzenio, that works on its own in heavily treated patients! I am hoping that will be my next treatment. I'm on xeloda since I/F stopped working. I went from 3000 to 2000 due to side effects. Too soon to know if it's working but I feel good and more motivated so I think it is.
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