Ibrance (Palbociclib)
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My RDW has been consistently high with every blood test I have had since I began taking Ibrance. Most of my other counts are low. I had to take a 3 week break from Ibrance before my recent surgery, and although some of my counts rebounded, my RDW remained high and my RBC remained low. My MO never seems to be overly concerned about it, so I assume it is a common SE.I do recall seeing that a blood smear was done when my RDW first took a significant jump and RBC went down. A special test for abnormal platelets was also done.
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teacher- I have been anemic for a long time. I too have the enlarged red cells. They both have improved. They are always a bit out of the normal range but not a lot. I try to eat things with iron but I am not a big eater period so I just take it as my norm.
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Hi All,
An update on that darn spot on my chest. After trying antiseptic ointment and various dressings the spot has not improved. I also had two of the home care nurses look at it. Both said it should be checked and they could feel that there was a lump. Now my lymph nodes on that side seem to be screaming. Sigh....
So, called the cancer agency and explained the situation. Emphasized there was likely no panic but thought my MO should be aware as I was not scheduled to see him again until July. He wants to see me tomorrow.
While I am relieved that I will know if it is something ominous one way or another, I hate that this makes me feel like I am slightly hysterical. And I worry that if the freaking cancer is spreading this fast what does it mean? Will he switch my meds yet again before I have even made it to round two of Ibrance? Or do we stay the course recognizing that hormone therapy takes time? Stupid cancer!
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Lynne, Trying to distinguish between having fatigue from Ibrance and/or fatigue from high RDW and anemia. Was macrocytosis ever mentioned to you? How high is your RDW? How have you been feeling?
teacher, how high is your RDW? I'll ask for B-12 and folic acid blood tests.
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Yes Lindalou and teach, my RDW(has to do with the size of hemoglobin molecules) has been on a steady rise since I started Ibrance. Maybe that's why I'm fatigued.
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Lindalou my RDW is 21.5 my platelets are low as well as RBC, curious as to special platelets test 50's girl mentioned. I think I mentioned that my B-12 and Folate were just tested and they were fine. I've been lucky for many years even with the metastatic cancer to have good blood work and feel fine. I too am trying to figure out if this is the IBrance or something else. The fatigue is mentally and physically exhausting.
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So is severe fatique pretty much a given with palbociclib? If so, I have my doubts that this drug is going to make my wife feel any better than the xeloda she is currently on. Unfortunately we feel somewhat pressured to switch, given the temporary closing window on availability of ibrance here. With xeloda, the issue for her seems to be sleep deprivation. Even with sleeping pills she can't sleep, so she is exhausted all the time. I doubt she will be happy with thinning hair, either.
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Had some GREAT news this morning. I lost my COBRA coverage recently, and the only thing that I really worried about was getting Ibrance covered until I go on Medicare in August. Pfizer called today to let me know that my application for help with my prescription has been approved!!! The cost will be covered 100% until this time next year! I'm so grateful and relieved - I'd jump for joy if I could!
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Kattysmith, that is indeed good news! We will take good news any way we can get it!
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Husband11, I'm only about to start my 4th course of Ibrance/Faslodex, but it has not yet caused either fatigue or hair loss for me. I have not been on any previous treatment for 26 years, so there should be no residual effects from previous treatments.
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Husband11 - I am on my 19th round of Ibrance. Yes, fatigue is a see. Some people handle it well, ours don't. I went from 100mg down to 75mg and it is much better. My neutrophils have actually held their own for the last 8 rounds. Also, I. Have some hair thinning but not enough to be noticeable to anyone else. Its worth trying.
C
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Husband11 - I am on my 19th round of Ibrance. Yes, fatigue is a see. Some people handle it well, ours don't. I went from 100mg down to 75mg and it is much better. My neutrophils have actually held their own for the last 8 rounds. Also, I. Have some hair thinning but not enough to be noticeable to anyone else. Its worth trying.
C
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aLso wanted to add my RBC has been consistently low and MCV consistently high on Ibrance.
C
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HusbandII - Ibrance will eventually be approved in Canada and there are possibly better options coming. If you like Xeloda, stick with Xeloda. There is some evidence that shows that being on chemos like Xeloda improve the response to hormone therapies later.
I will say that sleep deprivation is a serious side effect and Ibrance and letrozol may help there.
>Z<
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Lindalou, My RDW-CD is usually around 18 to 19, so not severe. I have not experienced fatigue with Ibrance with the exception of round 1. I napped every afternoon during those first few weeks. Since then, I have been fine. I don't know if the drop to 100 mg after round 1 helped, or if my body adjusted. How low are your RBC and hemoglobin? At the time of my dx two years ago, my hemoglobin was 7.1 and I was exhausted all the time, so I know that severe anemia can cause fatigue.
Teacher, my platelets dropped to 65 during, my first cycle. That is when they did the test for abnormal platelets.
Kathysmith, WOOHOO for the news from Pfizer. That is a big load off your mind.
Husband11, The SEs from Ibrance vary from person to person and even for the same person from one cycle to the next. I have been very lucky, and I feel great with minimal SEs. I have no fatigue, and my hair has not really thinned.
Lynne
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HusbandII~ ibrance is relatively mild for me, the hormonal meds are what get you weird the side effects the most,for me anyway . Sleep is critical, when I don't sleep well, I do nothing! fatigue is the biggest thing for me too with occasional unwelcome bone pain. I am about to begin round 7. I have a thick head of hair that will soon need to be cut, And I was bald bald bald. From heavy chemo. Losing our hair is traumatic and I hated it, it took away who I was, this cancer did, so I went into rebuilding mode. The way I dealt with my fatigue was a visit to my pallative care doctor who handles ALL of my medicines, I spoke to her and told her at like 2:00pm I hit a wall and have to nap and I hated it, she prescribed me a 10mg doseage of ritilan, I don't use it everyday , but I do use it when I know I'm going to be up and moving more Than I want to be. It helps tremendously. I know that the word palliative care doctor freaks some people out, but there are many things those doctors do, and is quite an untapped resource for us ladies. I don't know what I would do without her help. It's no way close to hospice or anything like that. Just pain and side effect management, I had scans two weeks ago at my sixth month on ibrance and I was considered very stable. So I am going to ride this ibrance train as long as there is track for me. Some women here have been on it for 44 months or more! I even believe our precious Z has at least 17 or even by now 18, and she's amazing and one of the fitness leaders around here. So... I wouldn't give up a chance to try it if you are able. But like Z mentioned there are many coming along the pike, and soon may be our ticket. All we can do is stay stable and press on. Prayers all around as always. ~M~
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Micmel et al.
My bloodwork has been stable for the past 10 months varying mildly occasionally. I did not start noticeable hair thinning until January, about 7 months into the Ibrance. Now it is very thin. Like you, I am going to ride this Ibrance train as long as I can tolerate it and it continues to work. I have friends like you all who have gone through tougher chemo, and although it is slam and done, I am ok with this treatment. The insecurity is here of course, who knows how long it will work for me, but I am thankful for some sort of daily functioning. I push through the fatigue when necessary and nap when necessary. Although I hate all of this, I am thankful for the thousands of ladies who have gone before us in tough trials so we can have some extended life and hope. I pray for all of us going through this now, and especially our families who must also bear the devastation in their lives. The fact that i can still cook dinner every night (well, most nights) for my family is priceless to me. And the fact that my 2-year-old can climb onto Nana's lap every evening without hesitation for a cuddle means more than I can say. May God bless us all!
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Hi all. Just got my monthly bloodwork back. Here are some charts that put the results in the context of results going back to just before I started treatment in January 2016.
Anyone who wants to interprete my cancer markers for me is free to do so. I thought CA 27.29 and CA 15-3 were different tests for the same antigen, yet these TMs moved in the opposite direction over the last 5 months. And, if CEA is to be believed I am headed for progression, but my scans show improvement.
In fact, the TM's that are rising (CA 27.28 and CEA) correlate with improved scans, as if the dead cells were releasing the measured antigen... but is there hidden progression? These are supposed to be leading indicators that anticipate what you will see in scans 3-6 months down the line.
I put these charts out there to show that it can a lot of data to figure out what TM's mean for an individual person. I am still not sure for myself. Maybe I'll understand in 5 years. But I love data so here y'all go ...
>Z<
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Thanks ladies for the RDW comments. Lynne, my RDW is 20.1, RBC is 3.0 and Hemo is 9.5. I'm only on cycle 2 so I figure my body will adjust as well. I picked up my magic mouthwash today and even though it tastes kind of nasty, I think it will help.
Kattysmith, glad you got approved.
Wishing everyone a good pain free ( as possible) day.
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my first cycle as I mentioned only last 13days. Onc stopped me taking my ibrance when nuetrophils hit 0.9 and They dropped further to 0.6 before improving. I had one day of fatigue but generally felt very well. Husband11 had mentioned sleeping. I know it's early days but I have slept the best on ibrance in over a year. I felt naturally tired at the end of the day and had uninterrupted sleep for the most part. Had a two week break and onc has me in tomorrow for faslodex and 125g tabs. Let's hope I have a better cycle this time!
This thread has moved fast. Great to hear about good scans and people doing well. I have no nuggets of wisdom to share yet but hope everyone has many pain free days.
Z, I hear you on the privacy. I am very private about cancer. I don't want it to define me. I have a small group of supportive friends and family who support me. The rest think I'm all good living life...which is mainly true! Liked that your name means lightbulb in Czech. I have also spent a lot of time there in my 20s, most recently last month. Amazing place!
Micmel nice post about pain relief. I don't know if we have such doctors here. The word palliative care freaks me out but yes thinking outside the box and using it alongside living sounds good.
I have started a notebook to write down interesting pieces of info you ladies have shared so thank you!
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Thanks all. I have also become aware of privacy issues and adjusted my conduct accordingly.
I have a stack of very old papers that I have amassed many notes on about treatment, clinical trials, alternative ideas, etc.. I don't trust a computer with it.
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Just wanted to let you guys know, in case anyone is interested in following a trial, that I started a new topic called "Clinical Trial - LSZ102 with Ribociclib" to chronicle my experience on the trial. Forgive the cross posting in other threads.
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This could be exciting news for some of us! My oncologist has been extremely excited about Keytruda, having great success with patients who have not responded to chemo. I have a friend whose lung cancer appeared to be winning and this drug has him with no evidence of disease after a year on it! (I sent an email to my doctor for my "just in case" file. You can't be too proactive!)
http://www.foxbusiness.com/features/2017/05/23/fda...
My prayers are with all of you today.
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I am popping in here to ask a question. My tumor markers are on the rise and I'm wondering if anyone here is her2-positive. I know it is advertised for her2- negative, but I was curious if anyone had tried it with herceptin or perjeta. Time for me to research new options.
Thanks
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starting back for cycle 2. Neutrophils are 1.8 is this still low? Anyone's elses start cycle at this number?
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Lllymillie,
The decision to start a new cycle is based on more than 1 count, but a whole picture of what is going on. My neutrophils are 1.27 but I still started a new cycle. I am not a medical doctor or even a nurse, but when I asked about specific blood counts, my onc says it is the total lab picture, plus how I feel, plus my results. Maybe I am a little naive, (and you guys are teaching me a lot!) but I ask questions and then trust her answers, or ask where I can find the research. I do have a PhD and believe me when I say I do my research and ask a lot of questions. In the end, I am getting good results and can function daily, and that is what is most important to me.Chris
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Hi Lillymillie,
I expect to receive my pills tomorrow to start Round #2. My neutrophils were 1.1 yesterday. It seems every MO is different. Mine was only concerned about the neutrophil count and was happy as long as it was over 1.0. He also requested a dose reduction from 125 to 100 as my counts were low while I was still taking the pills for round #1. After a week delay (actually 8 days as the Cancer Agency pharmacy did not get their act together enough to allow for delivery of the drugs today) I'll hopefully be back on track and the lower dose will keep my counts from crashing.
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Hi Lillymillie today my neuts were 1.1 & I started cycle 9 still on 125mg. I think they give you a break when neuts under 1 but if you continue to have very low readings they reduce the dose. Good luck.
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Lillymillie-My neutrophils were at .8 and .9 the first month but my oncologist kept me at 125. In the past 6 months I think the highest they have been have been 1.5 but she and I are not concerned because I feel good and have not been getting sick. My cancer had spread widely so that was a bigger concern and the Ibrance seems to be working well on my cancer.
Sadiesservant-What did your MO say about the chest sore? I had sores in the beginning related to the tumors but the Ibrance dried them up in about 6 weeks. Hope you can stay on it.
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Thanks for checking on my Chicagoan,
My MO said that it would be unusual for a met to appear in that location but that it's not impossible. However, the question was what to do about it. He indicated we could biopsy it but that wouldn't change our strategy for treatment. He would be more concerned if my lung fluid was increasing but that seems to be going in the right direction albeit slowly. So we're pressing ahead, staying on Arimidex and starting the next cycle of Ibrance.
While I really am no wiser, I felt much better after talking to him. He is fabulous. My gut is telling me it's a met as it simply won't go away while other miscellaneous wounds are healing quickly. He asked if it had gotten bigger and I honestly am not sure but suspect that it has become more pronounced (there is more of a lump I think - don't know that the diameter has gotten any bigger). This would explain why it suddenly got so sore - if the lump grew then my bra would be more likely to irritate it.
Hopefully the silly thing will disappear with another cycle of Ibrance.
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