Ibrance (Palbociclib)
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Dianarose~ My onc told me point blank, it will take roughly six months for your strength and energy to really kick in. To have the medicine really in your system and working the way it is meant to, that they seem to see patients pep up around the 6th month of taking it. I am starting my sixth month next week and low and behold, I am running and jogging and this morning was even dancing with my daughter to some crazy rap song she likes. But it was amazingly fun. I even shed some tears so thankful for this chance to have this medicine to even take. Hang in there Dianarose. At least you are able to say. It's been 13 years. To me that is a warrior badge you earned and wear for us allto see , it can be done !! Hugs. And best wishes! ~M~
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Dianarose~ My onc told me point blank, it will take roughly six months for your strength and energy to really kick in. To have the medicine really in your system and working the way it is meant to, that they seem to see patients pep up around the 6th month of taking it. I am starting my sixth month next week and low and behold, I am running and jogging and this morning was even dancing with my daughter to some crazy rap song she likes. But it was amazingly fun. I even shed some tears so thankful for this chance to have this medicine to even take. Hang in there Dianarose. At least you are able to say. It's been 13 years. To me that is a warrior badge you earned and wear for us all to see , it can be done !! Hugs. And best wishes! ~M~ Sorry guys. I'm still having server problems with this site again today!
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micmel- so happy you have your energy back . Looking forward to that. I was a pastry chef and I will think about making something good but that's as far as I get lol.
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I had my first PET scan yesterday since starting Ibrance 3 months ago. And I have to wait till Tuesday to see my MO to get results. I'm sorta scared to even get the results whether good or bad. And I don't know how I'm gonna wait 4 more days, 100 hours to get results.so, conflicting feelings for me today.
Sometimes I can pick up on body language from the techs after the test is over. Like when I dx in November, there was no eye contact, no smiles and few words. I knew. But, this time I couldn't. It did seem like the mood was lighter. Anyway, I'm trying to take that and believe that the tumors are smaller. To me THIS test is really huge in that it will decide so many things for my future. Such as, when specialty rx called yesterday to talk about sending my Ibrance. I had to say "I don't know". Then wait on a return call from my MO nurse who said "No". Doc wants to wait until appt.Tuesday to decide about that. I'm supposed to start pills again on Thursday, so it's gonna be a close call to approve, get funding and mail. Ugh. I do realize a day or two late won't matter much.
My "cold" that I've had since beginning of second month was a little better but today is worse. The fatigue is killing me, I want some Ritalin!!! My kids were here last weekend. All the cooking, dealing with my precious grandchildren (who argue and bicker a lot) and cleaning wore me into frazzled old lady. That is the pits. That is not me, I want to be able to handle their visits better next time.
So, here I am venting to my only friends who really "get it".
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Finished first round of ibrance/combo routine. I'm in the off week and have an high dose vitamin c/iv ozone treatment scheduled. Oncologist says to not do it but my research is saying it might help. The explanation I was given was that high dose vitamin c is an anti oxidant and that it basically can cancel out traditional chemo. They aren't sure with targeted treatment so they recommend not doing it. Does anyone have any info that might help? Thanks
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Grannax~ If I never had another scan ever again, I wouldn't even care, they bug me. Scanxiety is the worst part of everything. Even over the multiple surgeries I have had, the worst. Another thing that annoys me, is they make you sit there for days. Which really isn't fair at all. The ridilan Is helping a great deal for fatigue,and I am thrilled,! but at the end of the day I still have cancer, and Those Little monsters. Still have taken up residence in my bones and I had nothing to say about it. So I am with you!
Sending strength and hugs to you ! ~M~
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Cjc, I have never heard of that combo. I would never do anything my oncologist told me not to do. If he thought there was any benefit in this, he would have already mentioned it. One thing you don't want to mess around with is the potential interference with ibrance. There is a warning on the label. Not to have grape fruit of any kind , since I've read that. I won't even have orange juice, it's too close to the citrus family for me to feel any comfort. I would really give this some thought. I'd like to see Z weigh in on this one. There is a reason your onc told you not to do it. Or he wouldnt have a reason to say no. Think about it ! Please!
~M~
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just another little side note I've been noticing. Second day only on ridilan, but feel awake and minimal fatigue. I am also noticing an improvement in my heat flashes since I've been taking it already. I know people who take this medicine for ADD, makes them sweat a lot. But I am thinking that maybe since I am not ADD. It's again just The opposite. Still can't get over the difference with this ridilan. Just want to always share anything that may possibly help any of you!! ~M~
Today I also used shampoo and conditioner for the first time in over a year and two months. Makes me smile! Bless you all ~M~
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Joyner, I was still director of Flying Colors Cancer Network when I signed up for OBR. Surely there's a way around this. Let me check it out.
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Joyner, just click OBR Daily at the top of the main page.
You can register in the Industry box and put whoever you work for (or once worked for). This is just to receive a newsletter informing people interested in following the oncology industry. You could also put your oncology office and call yourself a "Volunteer" because, after all, you are!!
I would un-check the OBR Green and OBR Morning boxes so you don't get too many emails. Everything important shows up in the main newsletter which comes a few times a week.
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Had a lot of nausea today. Not sure if it was from the Ibrance, tummy mets or nerves. Anyone have nausea when they first started and if so what helped
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Micmel, I laughed over the shampoo and conditioner! I still use my old familiar shampoo to wash my close-to-bald head. When I took Taxol/Carboplatin in 2012, I only grew little-old-man hair back, wispy, white and pitiful. Of the many hundreds of people I've known who did chemo, I'm one of a handful whose hair went almost completely by the wayside. I spent most of my adult life and lots of my money covering gray roots, then bought a blonde wig with dark roots! In fact, I bought five just alike in case they discontinue my color! I do miss having my own hair but save money and time this way! May your hair grow thick and long and keep you smiling!
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Dianarose. ~ I did have some boughts of nausea. I called my onc and told them that and they prescribed me something for the nauseous feeling over the phone that day to my pharmacy. I don't have to use it everyday, but I i do Iike to have it just in case I need it. Mine is called Reglan. Works well. I used it when I had the tough chemo AC, and I never got sick one time. Hope that helps Dianarose. Your body is still adjusting to the medicine. Rest well ~M~
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micmel- I have Reglan but didn't take it with supper like I usually do because it empties your stomach quick but I will be taking it in the morning. I had actually cut my dose in half because one of the side effects is it makes you tired. Seems like everything we take has that side effect.
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Grannax, there's not a good reason your oncologist wouldn't have your MRI results by now. I would call and ask rather than wait for the appointment. Remember that even if your tumors aren't smaller but the FDG uptake is lower, that's a sign the Ibrance is working.
Don't let a few days delay in getting the drug upset you; almost everyone has had a delay for some reason or another. I have received my Ibrance from a special pharmacy and from Pfizer and they've both delivered overnight, even on Saturday. Once I even called FedEx and explained that it was medicine so they took it off the regular courier's truck and drove it to my house!
I'm so sorry about your "cold". There is a terrible lung infection going around and it seems to appear to get better, then kick back in. My oncologist even had it for 6 weeks...coughed so hard he injured his back. My daughter coughed like that and injured her rib. We all had such fatigue with it we could hardly function! I pray that you get better soon.
About that food prep for family...I'm learning to order in! We have something in Memphis called Chef Shuttle and they do a fine job of getting food here in an hour from area restaurants.
About problems with the website......I sometimes go almaost a day without comments showing and then, all of a sudden, there you all are! But I'm always happy to see you!
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I thought you all would find this interesting.
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Pat- the article sounds promising. Hopefully they can use what they know to do something sooner then later.
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Hi Pat,
Thanks for the news about the research from Sloan Kettering! The bottom line for now is to keep an eye on some trials we have been discussing, namely SANDPIPER and SOLAR-1, which combine two different experimental PI3K inhibitors (taselisib and apelisib) with Faslodex, compared to Faslodex alone. PI3K mutations are very common in ER-positive breast cancers, and the frequency of the mutation goes up when considering metastatic cancers that have grown resistant to AI inhibitors alone. Hopefully these trials will report soon to show us how useful these PI3K inhibitors are, and if FDA approves them we all may be moving to those combinations (alone or in combination with Ibrance). They also identified a new protein that functions in this step, but there are no drugs to that molecule yet, so the main implication is to keep a watch on those two trials...
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Cure-ious, I'm thankful you all are keeping us up to date on what's next. I love that we've moved from almost nothing new for ER+ MBC to having many therapies in the pipeline. My oncologist often tells me what an exciting time it is for him and his patients after decades of the same old same old!
Dianarose, you are going to get a very long time with Ibrance and you're going to feel so much better once your body has "forgotten" what chemo feels like! Keep your chin up. If you keep a detailed journal of how you feel mentally and physically today, then again on April 24, then on May 24, (and on and on for a year) you'll be surprised how much progress you're making. I'm here in Tennessee pulling for you!
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Thanks Pat. I will do that. It's only been a week since my last chemo. I love Tennessee. Hubby and I went there a couple of years ago. We had a blast. Hopefully can go again.
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hi all!
Just popping in to say hi.
Had all my scans last Monday & while I only have the bone scan results back, it was good, I get TM's & CT results on Tuesday. Bone scan shows mets are stable & improving. I did have a panic attack on the table (how embarrassing) but got through it eventually. I'm starting cycle 11 of Ibrance 100mg with brand name Femera. I feel good, my bone pain is gone, haven't taken even a tylenol in 4 months & I'm not having any of the exhaustion that some do. However, my hair is getting so thin, but I got it chopped into a pixie cut & everyone loves it, so I'm going with it.
I debated whether to post this or not, but feel that we need to hear good news along with our struggles. hugs to all of you, I do miss you all but I need to try to enjoy life with a little less cancer in it. cheers, dee
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Pat~ the hair thing is and has been one of the hardest things I had to deal with loosing. I was heart broken (as I am sure everyone is and would be ) I had chestnut brown hair half way down my back. I was like Linus and his blanket. It was my best feature. I still can't bring myself to look at old pictures, I miss who I used to be. I missed the freedom I felt in a healthy body. Just to walk all day without really feeling tired. Boy did I take that for granted. I was always so healthy. Would you believe my onc still tells me I am young and healthy. Then I'm like uh dude I have cancer.? He means my blood work has never been bad, and I was lucky to be able to have surgery. Which I am greatful for. My stomach looks like a road map with my arm pit and missing boob scar and liver resection scar the entire length with 35 staples of numb skin that was effected from them. Each month I see progress within myself each day my hair grows, I realize I'll never be that person again. I sure hope I learn to like the person I am now. That in itself is my inner battle. I am sure in ways you all understand what I mean. I would prefer to take down all the mirrors. My dh gets upset with me. He doesn't even care. I am blessed in so many ways. But this cancer has ruined so many wonderful things for so many people. Some nights it just makes me mad. You're all such lovely people and don't deserve this. Which leads me back to knowing we are all going to be here for many many years. New break throughs are for us! For that we are lucky 🍀!
Rest well ladies. ~M~
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Gg27- that is great news. So happy for you 👍.
I did some research on juices as I love orange juice. Grapefruit juice contains compounds known as furanocoumarins that block the cyp3a4 enzymes. When the juice is consumed the enzymes ability to break down the drug for elimination is decreased which may cause the blood levels of the drug to rise. It is also in Seville oranges but they are not used in juice because they are bitter. Also in limes and pomelo. Orange and apple juice have the opposite effect and can result in reduced absorption. If you want to drink apple or orange juice it is recommended to be at least four hours from when you take your medication.
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Oh Micmel - your graceful words mimic my thoughts. I lost most of my treasured long blonde hair last year due to Ibrance (one of the 22% who do). I cried and went online and found hair halos. For any of you losing hair due to Ibrance here is their website. http://halocouture.com/the-fall/ I use the fall everyday at work (it is shorter than my own lol). My scar from a bad transflap traverses my pelvis, and I would not look at myself down there for months. From the outside you would see a smiling lady with good hair and a healthy size body, but my heart is heavy from cancer meds, ibrance fatigue (round #16) and I need naps. That's why I am getting my travel in now; Baltic cruise in June, Paris in July. I downsized my home after bc and now live in a townhouse by the water - better air and more friendly. I have watched lovely ladies leave our board when Ibrance fails them or just doesn't kick in fast enough. It takes about 4-5 months to see results and some ladies don't get that time due to blood levels crashing, etc. Ibrance may be milder than IV chemo, but it is tough stuff. My sense is that a positive attitude, good eating habits, exercise and becoming knowledgeable about this journey benefits us the most. I am very glad for this board and it's sisterhood. Happy for you GG27 - Z you inspire me everyday. I am keeping track of our Ibrance veterans approaching or at 2 years - how many are we?
(()) Claire
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Claire, I will be starting cycle 23 on Monday! Working full time and doing well! Fatigue worst side effect.
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Cjctoo -
I sent you a long winded response by private message, but my complementary approach is overseen by two different naturopathic oncologists who have worked with Ibrance since it was released. My supplementation is extensive and aggressive and includes vitiamin C IV's as well as high doses orally. Ibrance plays well with complementary meds as far as I can tell.
I do think complementary meds are drugs like anything you get at the pharmacy and their use should be overseen by an experience naturopath. Traditional doctors are not trained in their use and, in my experience, are often confused on the facts and data. I don't ask them what they think.
The most important complementary treatment is cheap easy and free. Go for a walk. If you are not regularly exercising, managing stress and eating well, there is no pill, prescribed or otherwise, that will have much effect.
Grapefruit and friends interfere with the metabolism of Ibrance. I am not aware of any issue with a high effective dose of Ibrance unless side effects are bad. I enjoy my occasional glass of grapefruit juice.
>Z<
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Pat, hooray...I think that my registration for the OBR worked...thank you! I have become a "volunteer" in my doctor's office (little do they know)!
I feel as though you're our "den mother", though you and I are about the same age! Thanks for all of the uplifting words and sage advice as we go through this journey together. I'm also saving all of the good advice on wigs, etc, lest I need them in the future.
Dee, hallelujah for your progress and positive news!
Dianarose, thanks for the good information. Things will be looking up for you on Ibrance!
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Claire~ your sweet words are so kind. I have been sharing something that my pallative care doctor had given me. I am totally doing backflips over it. She has given me 5mg of ridilan, and it sails me through whatever afternoon fatigue I've always been stuck at between 2:00 and 5:30ish. Is my nap time. But then I don't fall asleep until midnight and don't sleep sound enough. This ridilan is impressing me so far. Two days into it I have met both excersise goals. Yesterday I cleared 8000 steps which is my new highest and ran a mile and walked another two swiftly. I was dancing with my daughter to this crazy rap song she likes and I was feeling awake and not sick!! I recommend trying it to everyone. If you don't like it, you stop. But if this is something that can help you ladies fatigue. PLEASE consider trying it. It has been utterly explainable how well I am feeling on it. And it's fast acting not extended release, so by bedtime I am ready with my teddy bear and a smile for my pillow. I started to hate my pillow because all I wanted to do was sleep. Not anymore! It's honestly been the only thing I have found to even come close to making me feel like for a few hours anyway I don't have cancer!!! Try it. I want everyone to feel the way I have felt for the past few days.!!! Sending thoughts of hope to all ~M~
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Hello Ladies,
I went for my first PET/CT scan since starting Ibrance. I had finished 4 rounds. Mixed results, the sacrum area that I had radiated showed improvement but there were two new areas that lit up, but the uptake was around 4 in both. Of course my doctors didn't agree but radiologist oncologist who I've always had a better rapport with seems to think it is inflammation . Do any of your doctors talk about inflammation on a PET/CT scan. I can say that I'm not one of you that feels Ibrance and Letrozole are easy treatments. My body aches and the fatigue is tremendous. I think the general plan is to stay the course at 125mg and see what changes there are in 6 months. Also, I asked about any studies to show the efficacy of 125 v 100 and my MO didn't know of any and wants to keep me on 125mg. My blood counts don't run low enough for her to warrant changing the dosage. For you ladies that switched from 125mg to 100mg were there other reasons other than low blood counts?
Thanks,
Michele
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Michele, the consensus here is letrozole sucks! Everyone one who takes this combination gets the joint pain and fatigue. Everyone, we have also seemed to narrow down that it isn't really the ibrance that seems to be the harsh one in this couple. I am on anazstrazole, I see some joint pain yes, but I am starting to think that it's less harsh than letrozole. I have also been on 125 mg for 5months and my blood work has been fine. No delays and overall I feel lucky to have this chance to have this medicine after the terrible cytoxin and adriomyicin red devil chemo combo, which brought me to my knees. I haven't had any scans since November and am due for my six month scan may 5th. But he only called for a ct scan of chest and pelvis area.
My strength is returning, all of us have inflammation, that's a big part of the pain and why I take Claritin And naproxen daily to keep up on the joint issues and flexibility. If you aren't ok with the answers that you have been given, keep asking, have another radiologist look it over, demand answers.
My new answer to fatigue is ridilan, I just got back from a mile and a half run. It was fantastic. I highly recommend it. I was begging my pallative care doctor for relief from this bottomless pit of fatigue and Bam. That was her answer. God bless that answer. Just some thoughts. Hang in there. ! We're all in this sh*t soup together ~M~
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