Ibrance (Palbociclib)
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Thanks Chicagoan. That's very encouraging. I wasn't too bad with the fatigue during round #1 but by the end of round #2 it hit me. Now I feel like I am in a fog all day, yawning constantly. (Not precisely the professional image I'm going for.)
I agree that the nurses are likely overdoing it. The problem is that is a bit of a revolving door. I have one or two that I see more regularly but the rest have been a couple of days at most. Some of the nurses insist on having the bottle on the floor, thinking that gravity is necessary. When that happens I can't see the bottle so can't figure out if they are draining too fast or if the lung is dry. Not letting them do that any more! Not sure about the froth as I think that, in my case, the first fluid is frothy.
I am definitely looking forward to the drainage stopping. It will really feel like getting part of my life back!
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To those who like to follow developing therapies, here's a discussion from Onc-Live last month for MBC"
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Thanks for the links cure-ious. Always like to read what is current.
Anyone get severe toe/calf/thigh cramps at night? I had some while I was on Faslodex but these are really painful charley horse type of cramps, that have me whipping out of bed to try and walk them off. Minute I get back in bed they start all over again. I drink a lot of water so dehydration isn't an issue. I am taking magnesium so hope that helps, although last check level was normal.
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Potassium? I always thought leg cramps where potassium related. Try a few bananas or at least one every other day. It helps me. I get them bad sometimes.I'm going to read up on that!! Just a thought! ~M~
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OncLive also mentions a study combining abemaciclib (new and maybe better Ibrance-like drug, which can cross brain barrier to get at brain mets) with Keytruda (immunotherapy) in lung and breast. The breast cancer cohort has now completed enrollment and data will be presented at the next San Antonio Breast Cancer Symposium.
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Someone had asked a couple days ago about a fast heart rate while on Ibrance. Mine is rarely under 100. If I add a bit of stress to it it's higher. It fluctuates. Today while waiting at the cancer center I had constant heart palpitations. When my platelets get low my heart rate goes to 120-130. It's sort of scary.
Last week my tumor marker went up 17 points so the had me come in today to redo the blood work. Tumor marker went down 11 points and platelets up to 257. Such a dam roller coaster ride.
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Hi Lindalou,
I have leg cramps quite frequently these days. I assumed it was from the Arimidex. It's not bad enough for me to jump out of bed but can get pretty painful. Micmel is right, potassium is supposed to be the cure. I am eating half a banana a day but that doesn't seem to have helped so far.
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Dianarose, I don't want to put another scary thought in your head but have you had a heart rate function test? My Chemo years ago left me with cardiomyopathy and I am now on a beta blocker to slow my heart rate and help keep my blood pressure under control. My av. HR now is only about 67 and my HR function is improving with the med and exercise. I certainly understand about the stress making your HR go up, mine also goes up and so does my blood pressure. I have terrible " white coat anxiety". My BP goes up if I just think about having it taken. I'm sorry your numbers are bouncing around so much. That is really stressful to think about.
Thought I would share what I learned today from talking to a Pfizer pharmacist. Someone had mentioned here about a possible interaction with turmeric which I've been taking for leg and joint pains. He said there are no studies showing a problem so it is ok to take. I'm not sure if it's helping the leg cramps but I think it's helping the joint pain. I also asked about Zantac since my PCP just told me to try that instead of omeprazole for heart burn because I'm worried about my bones. I also asked if I forget a pill or two in a cycle if I should stop after 21 days or just end at the normal time and take my week off. <Z> you will be glad to know that you are doing it right (although you probably didn't have any doubts). We should just take all 21 before taking 7 days off.
I'm pretty sure the leg cramps are potassium related but a natural remedy I read about and tried, seems to work for me. Drink a shot glass full of dill pickle juice. Yea, I know, sounds awful but for some reason it works for a lot of people. You can follow it with a glass of water. Another remedy along the same line that I can't do is a teaspoon of mustard. 😏
Ok, friends, that's my input for today. Hope it helps someone. :-
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Faith- they did an echocardiogram which was fine but that was before A/C. My blood pressure is always great. I have had palpitations since I was 19 and have always mentioned them but none of the docs ever seem concerned. I am going to try the banana for the leg cramps though
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Regarding leg cramps, get ready to call me crazy! When we had the cancer support center lots of anecdotes about home remedies were shared. The one discussed in the article below consistently brought success to people with leg cramps.....Bar soap under the bed sheet! Plain old scented Dial Soap seemed to be the one that worked. Not every single person got relief but more did than not. Crazy.
https://www.peoplespharmacy.com/2012/07/22/why-doe...
Cure-ious, I'm so happy about the trial you mentioned. My oncologist is excited about Keytruda and a recent article about the FDA opening up this drug beyond the specific cancer types for which it was approved is exciting.
I'm looking forward to finishing this cycle of our dear Ibrance as it has been a difficult one with more nausea and increased fatigue. I was planning to take an extra week off in August but am now considering asking for 75mg that month instead. I'm praying for wisdom on this one. I also decided to forego some of the supplements for a month in case the nausea is caused by those. They have sometimes been a problem for me in the past. This cancer journey is always an adventure, isn't it?
Love to all of you!
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Hello Ladies;
it looks like I will be starting Ibrance/Letrozole tomorrow or the next day.
I know the clinical nurse will advise me how to take the drugs but I was wondering if anyone could help with the time of day they find the best? Note from reading posts here that the cycle is 21 days on for Ibrance and 7 days off, and 28 days continuously for Letrozole. So no break at all for Letrozole?
I am starting to feel a lot of pressure from the sternum bone mets and large tumour around same, hard to breath etc.. I sure hope I feel some improvement in a few months.
Cathy
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Pat, I also had heard that soap could help leg cramps. It does sound crazy.
I read that low levels of potassium, magnesium, or calcium can allcause leg cramps.
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PatgMc, I forgot the bar soap under the sheet, I've seen that one too. I'm going to have to try that one, since it's easier than getting up in the middle of the night to drink pickle juice.😏
I'm so sorry to hear you are having such a problem tolerating the IBRANCE this month. I just saw an article mentioned on the letrozole thread that more side effects means it's working. FWIW. I see that your profile says you started Ibrance in Oct./2016, so not even a year yet. I started in Jan. '16 and I think it took more than a year to start not feeling lots of fatigue and other stuff even though my blood work was ok. I think the last few months have been easier. I say I think because my short term memory is getting worse by the day from probably the letrozole. I'm also considering cutting back on the supplements to see if that helps anything. This cancer journey is not for the faint of heart, always a surprise waiting for us.
Cathy, Hopefulgirl, we will all hope you feel improvements in a few months, many of us did. The time of day is different for everyone. I take mine after breakfast as that is my most consistent meal time wise and I also like to eat a big breakfast but if lunch or dinner is more consistent for you, take it then. What's important is taking it approx. the same time each day with food. And yes, no break from letrozole. Sorry!
Love and prayers for everyone. Keep on keeping on!
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Hopeful, I'm so glad you are going to get the meds started soon. I take quite a few meds, including the cancer ones and the ones I use to treat my MS symptoms. (I don't take any official MS drugs, I just treat symptoms). I don't take anything with breakfast. I worry about anything with an empty stomach. I take the letrozole with lunch when I take all my supplements and vitamins. I take Ibrance with dinner when I take one other med that needs to be taken then.
Wow, you guys are making me wonder about leg cramps which I have always had due to MS neuropathy and that neuropathy getting worse during chemo. You mean I might be able to tamp it down supplements, soap? Trying to fall asleep at night is a struggle with that pain. If I get in an extreme fetal position, I have a chance but it's hard.
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Faith, thanks for the encouragement that the fatigue will get better. This is the week my counts are lowest so I'm sure that's why I'm in a funk. (They're never much below the normal range so I shouldn't complain!) My doctor visits are off a week so I'll get XGeva Monday during my Ibrance off-week. I've got to fix that as it fouls up a couple of days leaving me with extra fatigue. I have some paintings due for a show and I think if I push through and start working on them, I'll feel better. The show is to celebrate Elvis Month so the work always makes me smile.
Faith, about that memory loss, this is one of my favorite quotes: "Of all the things I've lost, I miss my mind the most."
Hopefulgirl, I take my Ibrance and Arimidex just as I start to eat dinner. Once when I left time in between I vomited and had diarrhea. ( I never write diarrhea without being spell-corrected!) I excitedly await your sternum mets clearing up!
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Hopefulgirl, I take my Ibrance and Letrozole with dinner as it is my most consistent meal. I rarely have nausea after and no diarrhea until the next day (if I have any.) We have had the discussion here that there is some evidence that taking Ibrance with a high calorie/fatty meal enhances its effectiveness. My "chemo brain" doesn't allow me to remember all of the details of this, but I am sure someone will remember.
On another note, does anyone here take an occasional Benedryl as a sleep aid? My GP said it was fine but I keep forgetting to ask my MO.
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Great news Hopefulgirl. To add to the choices, I take mine at 6:30 AM every morning and have not had any problems except once when I did not drink enough water and had UTI like symptoms. I now always take it with a big glass of water.
Not only is this the most predictable time for me, I also chose not to have it with dinner. Not sure if it interacts with alcohol and I am so not giving up my glass of wine at night! 🙃
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Pat~you and I seem to be on the same type of schedule. I had my off week started onSaturday. Today I had my XGeva shot and I am not really looking forward to the creaks and pains tomorrow will be bringing. Last month wasn't terrible so I hope each month the symptoms will lessen! A girl can dream!!!! Ugh! Rest well ladies ! ~M~
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I just met some people on Facebook who are 23, 24 and 27 months on Ibrance. Just thought you ladies would want to know! And the beat goes on.
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And on and on! Let's just double those numbers and then some. Thanks Pat, we all need this good news
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Depending on the source of information, the half life of Palbociclib is approximately 28 hours. Compare that to a drug like xeloda, with a half life of less than an hour. That means it sticks around for a relatively long time in your system, and doesn't have great highs and lows in concentration in your system between doses. It then makes sense that the instructions say to take it at approximately the same time each day. The type of meal you take it with has some influence on the concentration of the drug in your system. High calorie, high fat meals result in the highest levels of the drug in your system. Just thinking out loud here, but if you can tolerate the highest dose, then perhaps the type of meal you take it with may play a role in either raising or lowering the levels of the drug absorbed, but considering many women have their dosages reduced over time, consistency in the type meal would seem more important, to keeping your levels stable at whatever dose you settle into.
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my oncologist said every three months is enough for the xgeva.
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Brixton, my oncologist wants me to take it every month but one of these days I'm going to take a break. I just learned that nausea is one of the side effects so mine could be coming from that. How long have you been taking it?
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Thanks, Husband11, for the info!
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I know my brain is a little foggy so I'm hoping some of you with better functioning gray matter can tell me if this study from MDAnderson says they may have found a drug combo which allows the Ibrance dose to be reduced to one-fifth. I'm so excited to see the rush to find combinations that will improve what's already happening with Ibrance. The prospect of having it work with one-fifth the side effects makes my heart leap! I'm going to go and read it again. (I read it again and I'm pretty sure that's what it says! Cool.)
The fact that they will be able to tell in advance who will benefit is quite wonderful too.
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Pat, this study from MD Anderson sounds as though it could be a game-changer. Thanks for posting! I do wonder how quickly this sort of thing makes its way into actual treatment. Does anyone have any knowledge of what is likely?
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I will be starting the medicine Ibrance July 19 but have some major concerns and cannot find anyone locally that is or has taken it. First off, I am finishing up my Chemo treatments thru my port in the next few weeks which means I have had total hair loss and am more than ready for it to grow back! But...everything I have read about this medication states that it can cause hair loss or thinning. Does that mean this medication will prevent my hair from growing back post Chemo?
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Leslie- I did Taxol and A/C prior to Ibrance and was totally bald. Hair is coming back slowly, but it covers my head. It's about a half inch in most places and longer in the back. It is much thinner but its hair
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How long has it taken for that hair to come in? Once I switched from the Duo Chemo to the Taxol I started having some hair growth but it wasn't all of my hair... I had my husband shave it down even because it looked so silly... I know it seems selfish but I'm just ready to have my real hair again! How is the Ibrance treating you?
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Welcome, Leslie. We're sorry that you have to join us but very glad to welcome you among our ranks. You'll find this to be a well-informed, kind, and supportive group. Good luck on your first month. I'm in the middle of my 5th and doing quite well.
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