Ibrance (Palbociclib)
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Merry Christmas PatGMc! It's so good to hear from you!!
Although my wife was diagnosed with MBC in April, we feel relatively blessed to have Ibrance be so effective.......so far (with minimal SEs). It's so encouraging to hear the long term success stories from other dancers (and sobering to hear about when it stops working). We're also thankful for this site and this thread because they've both been such a wealth of information.
Happy Holidays and good health to all those suffering from BC.
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My wife is feeling better after the pint of blood. I haven't pursued Pfizer since yesterday. They gave me the brush off, so either their service to Canada is different, or the person I spoke to when I called the customer help line didn't know what she was talking about. The pharmacy was a lot more helpful.
I've read that having the flu can lower your red blood cell count. I am hoping that is what it was.
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Love and hugs to all who are here now, have been with us and who will join us. You all are a critical lifeline for me in the ins and outs of our dx and this Med and for some good humor and encouragement. Thank you one and all and may you have many days of feeling well
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Imagine, sorry for not replying earlier, Christmas!! I am have been on Ibrance 75 for 20 months, apart from 2 months when I was on a higher dose, but my body could not recover. Fatigue in week 3 is my biggest side effect, others come and go, but are treatable/bearable.
Best wishes to all for 2020.
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Candy and Airline, just for info I’ve been on 75mg Ibrance almost from the start and only onc made the 4 week schedule. My MO and team agreed a 5 week schedule with 2 weeks off and I’m NED on that and have been for a year. No need to fix what’s not broken my MO says, but apparently I am unique in my peer group in central Scotland.
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Good for you Karen....I have been 21 days on and 2 weeks off for about 3 yrs.0
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Two weeks off would be great. I'm still on the 125mg, my MO doesn't want to change that because my numbers are low but good for ibrance. Karen\airlinegal, when did you switch to a 3 week on and 2 off schedule? I'm on my 13 cycle now and NED, I might ask her about taking 2weeks off.
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Just got back from hospital day and they couldn't release my second cycle pills because my neutrophils were 0.9. Damnit - so another week off and I test again next week and it sounds like the MO is going to knock it down to 100.
I know is not THAT big a deal since most folks don't tolerate that maximum dosage, but feel kinda bummed for some reason.
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Sondra, MOs are so different in their reactions to our counts. On my first two cycles and occasional others I’ve needed two weeks off for my ANC to rebound over 1 (or 1,000 in my lab’s terms). My MO said two weeks off doesn’t bother her at all. She is a stickler for the number though, I’ve been 980 and had to wait on that. If it doesn’t bother her, it doesn’t bother me. I’m sure you’ll have others respond with their experiences. I’m still on 125, but also wouldn’t object to being dropped down. When everything is new there’s so much more worry, and I know that feeling for sure
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I've copied the info from the Ibrance prescribing information. It seems like many MO's overreact to low ANC's. As I've noted, mine have been grade 3 for over a year but since I rarely get sick and have no fevers my dosage has never been reduced. If I was NED, I would consider a dosage reduction but since I'm not I prefer to keep using the "big hammer."
Table 2. Dose Modification and Management – Hematologic Toxicities*
Grading according to CTCAE 4.0.
CTCAE=Common Terminology Criteria for Adverse Events; LLN=lower limit of normal.Monitor complete blood counts prior to the start of IBRANCE therapy and at the beginning of each cycle, as well as on Day 15 of the first 2 cycles, and as clinically indicated.
For patients who experience a maximum of Grade 1 or 2 neutropenia in the first 6 cycles, monitor complete blood counts for subsequent cycles every 3 months, prior to the beginning of a cycle and as clinically indicated.CTCAE Grade Dose Modifications Grade 1 or 2 No dose adjustment is required. Grade 3 Day 1 of cycle:
Withhold IBRANCE, repeat complete blood count monitoring within 1 week. When recovered to Grade ≤2, start the next cycle at the same dose.
Day 15 of first 2 cycles:
If Grade 3 on Day 15, continue IBRANCE at current dose to complete cycle and repeat complete blood count on Day 22.
If Grade 4 on Day 22, see Grade 4 dose modification guidelines below.
Consider dose reduction in cases of prolonged (>1 week) recovery from Grade 3 neutropenia or recurrent Grade 3 neutropenia on Day 1 of subsequent cycles.Grade 3 neutropenia† with fever ≥38.5 ºC and/or infection At any time:
Withhold IBRANCE until recovery to Grade ≤2.
Resume at the next lower dose.Grade 4 At any time:
Withhold IBRANCE until recovery to Grade ≤2.
Resume at the next lower dose.0 -
Huh- that's really interesting Chicagoan - thanks for posting!
I mean, I only had a few moments of fatigue during the cycle and my bloods two weeks ago were fine. The last week I've felt fine and was doing more than I had in the prior three weeks. To be fair, the person who mentioned the onc may knock it down was the clinical pharmacist, not him. Since he is so by the book I suspect if they rebound then Ill stay on 125 (based on the above).
Perhaps I should look at this as being lucky for being drug free during the holidays
Now if only I could sort out my hips!
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SondraF, I stayed at the 125 for two cycles, per protocol, but when my neutrophils needed two weeks off to rebound after the second cycle, my doctor lowered me to 100mg, and I've been on it ever since. My neutrophils have been around 1.4-1.6 most cycles, and he said he could theoretically try to re-up the dose, but doesn't think it's necessary based on the studies that show equivalent efficacy at the lower doses. I had much worse fatigue on the 125 mg, and he'd rather not subject me to un-necessary SE's if the efficacy is going to be the same. He said he would consider a dose increase for someone who was on something like 75 mg two weeks on/two weeks off to bring them back to a "standard" dosing regimen if their neutrophil situation got better as cycles went on.
He also said he's not yet had a single patient that was able to stay on the 125 mg dose (we must be wimpy here on the East Coast, since I know there are plenty of ladies on the boards who managed to stay on 125 mg). He now starts most people at 100 mg to avoid all the initial delays and dose changes.
A long-winded way to say that if your dose does get lowered it's going to be just as effective and you might even feel better, so no need to worry about it.
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Hi Sondra and Piggy. I am one of the rare people who have been on 125 the whole time--3 1/2 years. My onc only just this last time began to speak of a dose reduction since I am having trouble with a lingering cough and my count was under 1.0. Otherwise, I am doing fine tolerating the SEs.
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Ah thanks for the insights ladies - was having a frustrating day anyway and I just want this to level out! I know a week off won't be horrible, but I'd like to finally get this part at least to something resembling stable so I know what to expect on a monthly basis for hospital visits and the like.
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There is no data, (zero, nada, zilch) showing, or even testing, for differences in efficacy in different doses of Ibrance. I've looked (and looked and looked). The variety of reactions by MO's makes it obvious to me that they just don't know because there is NO data. There is no notion of strength or courage or persistence in staying on a higher dose. Dropping to a lower dose should not be construed that way. I am not suggesting anyone here does. But to newbies, I fear they may hear this concept in the background. It is simply a matter of perception, not reality. I'm sticking with my small hammer. Almost four years on 75 mg.
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I posted about this on previous page (Dec 23). My onc stresses about my counts. I am on 75mg and my ANC runs 900-1000 (0.9-1.0), Grade 3 or borderline Grade 2, after my 1 week off. She has commented about lowering my dose--I guess she means more time off since 75mg is the lowest. I do not want to change the schedule because it is doing the job. Stable on Cycle 24 now. As long as it doesn't drop lower than 900 I am fine with keeping things the way they are. I have not had any sicknesses yet--knock on wood.
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my first prescription for Ibrance is on its way.
Chicagoan thank you for the info you posted about Grade 1,2,3, and 4 and ANC numbers. I have a question or 2.
In the first 2 cycles, how often should I expect to have my blood tested? Working full time so starting out the year taking time off every couple of days seems like a lot.
Thanks for any info.
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DodgersGirl-For the first two months-maybe three-they have you come in twice a month for blood tests just to make sure things are ok. Hopefully you can schedule the test either on a Saturday or at the beginning or end of your workday so you don't have to take a full day off. Good luck! I started Cycle 42 today.
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DodgersGirl, my blood was tested at about two weeks in the first cycle. Then it was tested at the end of the week off. From then on, it has only been tested at the end of the week off. It has always been above 1.0 so I was allowed to start the next cycle. You should be fine working.
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thank you Jaycee49 and Chicagoan
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Jaycee I did see a study long ago that showed equivalent efficacy between 125 and 100. I’ll see if I can find it and share the link.
Netta so sorry for your pain and progression I’ll be praying for you
HugsPenny
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Equivalence, yes. Differences, no.
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Piggy99 - I’m on the East Coast....share with your doc that I am one of the rare ones, as well, and been on iBrance 125mg for 77 cycles. SE’s were tough in the beginning and my counts were boarder line, but dosage didn’t need to be adjusted.
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Got to thinking about my last post----- my ANC is 900-1000 (0.9-1.0) AFTER being off Ibrance for 7 days. So.... how low do I go DURING Ibrance use????? We do not do a blood test during the month. We did at the start of Ibrance use- 2 years ago. But only for the first couple of cycles. Then went to monthly blood test done on the week off the med. I don't think I want to know what the numbers would be during Ibrance use. I don't think my MO should know either. She would really freak. But that means I am living with at least a Grade 3 neutropenia all the time and only getting to Grade 2 when I have been off med for 1 week. Then the cycle starts again. WOW. Kinda scary if you think about it. But it is keeping the cancer at bay. I thank God for that.
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candy-678 - We've had the same thoughts. My wife's ANC is typically 950-1150 after being five to seven days OFF Ibrance (she's on 100mg, 3 weeks on, 1 week off). We assume her immune system is weakest that 3rd week she's on Ibrance. As a result, we're pretty careful about what she does and doesn't do that week. For example, in October, my brother wanted us to meet him in New York City for some sightseeing, but since it corresponded with her 3rd week on Ibrance, we passed. It just seemed like a NYC Petri dish was just about the last place she should be.
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I believe I read somewhere about Ibrance that the lowest point is at day 15 of the pill cycle. That has proven pretty true for me, if I follow the way that I feel. I am now finishing up on cycle 5, and I've figured out that from about day 13 -- 14 on, my fatigue will increase and also it seems like my resistance to colds, viruses, etc. also decreases. So, Mike, I think you are on the right track. I, too, have started planning carefully for that third week because I know that it will probably be my low point in there, give or take a day or two.
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Exactly, candy - I wondered that too right after I got off the phone with the pharmacist. I imagine they can't dip too far below the minimums set in the grades or it wouldn't be on the market. I do worry about going back to work on that third week - my office is open plan and let me tell you how fast illness rockets through that joint, especially as a lot of people have small kids. Not to mention the public transport, although really, even if I wore a full body hazmat suit like for Ebola I don't think anyone would notice :P
I noted I was sniffly and sinusy on Day 15-17 of this first cycle, and then the bone and muscle pain started to subside by the 18th. OH has been wandering around the house for the last five days sneezing and runny nose, so who knows.
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BevJen- I have read that also-- day 15 of cycle is the lowest point in our counts.
BLMike- I understand about shying away from plans. My friends want me to go places with them, but in the fall/winter months with colds and flu everywhere I shy away from crowded places. I have not been sick in the 2 years on Ibrance. But I go crazy with the germaphobe thing. I wash my hands a lot, stay away from crowds, wipe down cart handles with bleach wipes, even wear a mask in public. I have read on here that Ibrance works a little differently on our counts versus "regular" chemo. But I don't know about that. And IF I would catch something do I pause Ibrance use during illness to get the counts back up?? I would call MO to clarify. Wonder what long term use of Ibrance and constant low numbers is really doing to our bodies??!!! Cannot be good for us to live in a constant state of low counts. Really drives home the thought that we are living a dangerous life--the cancer and the side effects of the drugs.
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Sondra- I pray you stay healthy. If people would stay home from work when they are sick instead of coming in. They don't know how it could hurt someone like us.
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Candy et al, I will weigh in on my feelings about avoiding germs...
Yes, I am careful but I have not wanted to go into isolation and prefer to live my life as free as possible. I live with and partially care for my four year-old granddaughter who up to now was in preschool and about once a year catch a cold from her, but so far i am able to get over it fine. (The rest of the family usually gets the cold at the same time.) We have decided to take her out of preschool since her mom is starting nursing school and will not have a paycheck for awhile. We are hoping it keeps her healthier, and me by default. I wash my hands a lot, am very careful in public but don't wear a mask unless I need to be in an enclosed area (like an airplane.) I don't shake hands anywhere including at church (awkward but worth it) and use hand sanitizer often. My onc is not overly concerned with my minor colds so far and feels that I shouldn't panic about germs believing my low immunity on Ibrance is not extreme. I am fortunate that I am now retired and spend most of my time at home. I did take a cruise a couple of weeks ago, had a blast, and stayed healthy. I was careful but did not once wear a mask.
All that being said, I believe we should all make our own decisions on our own care but not live in fear. We all live in unique situations. I am so thankful for this site where there is no criticism or guilt about how we handle this disease individually. My choices may be totally wrong for someone else and that is ok with me. I want everyone here to stay as healthy as possible and live long lives full of as much happiness as we can squeeze out. Now, time to watch Mary Poppins with my granddaughter!
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