Ibrance (Palbociclib)
Comments
-
Hi Tina2,
Sorry to hear you are feeling so low. You don't say what dosage of Ibrance you are taking. I have been on 75g for the last 2 years, my body cannot take the higher doses, others on this site are the same. I have also decided I need a longer time to recover, so will be taking a 2 week break at the end of this cycle.
If you are on 125g/100g it might be worth a discussion with your oncologist about trying a lower dose.
For everyone stuck in lockdown, keep sane and well.xx
0 -
Welcome....I'm new here too. I'll be starting Ibrance in a few weeks when my pneumonitis from Verzenio is resolved. I wish you well with your treatment. Wonderful new drugs for us now.
0 -
Hi, Tina2,
Just to chime in here -- I have had different things going on with me in different cycles -- I've just finished out cycle 9, so haven't been on Ibrance yet for a year. There have been months when I thought I couldn't slog across my house to go and get a drink of water. Most months, though, I feel pretty decent. I would keep a record of what's going on with you -- perhaps it's overkill, but I find that it also helps to establish patterns in your cycle. I know, for example, that around day 10 or 11, I start to slow down a bit. That's usually gone by around day 15 of the pill-taking cycle. Different folks here have reported different cycles. But at least if you do this, you can know what to expect as you make your way through your cycle.
Having said that, I usually feel pretty good during my week off. This month, though, I felt okay for the first day or two and then boom -- I got some mouth sores on the outside of my mouth and my energy is very low. So this is out of my pattern, but we'll see how the rest of the week off goes.
Good luck -- I have found, as others have reported, that things have generally gotten better over the months that I've taken this drug. Hopefully it will be the same for you.
0 -
Rubyla - I am glad you are there to help your mother. The cancer journey is scary, confusing, especially during these times. Information is not always consistent, even from health providers. Effectiveness and SEs from both drugs seem to vary widlely. I also take Ibrance and Arimidex (brand name Anastrozole). I just started cycle 8 of the Ibrance (started Sept 2019). According to scans, the tumor shrunk since September. Yeeeh!!! I get a scan on Monday and hope that it is stilll shrinking. I take all my meds and supplements in the AM with breakfast, so eating with food is not an issue for me. I like breakfast. Some users say they are getting a new formulation that does not require food. One of the confusing things with Ibrance is the 21-day on, 7-day off. I use a calendar to log Cycle #, Day #, No-day(7 off). The drug manufacturer should send you a 21-day on, 7-day off pill box which might help ( I do not use mine, prefering to log days on a calendar). Official SEs can be found here. https://www.ibrance.com/ , but it is worthwhile to see what users of the drug are saying as well and if they find relief from the SEs.. Your Oncologist should be monitoring WBC RBC. My counts are quite low, but not so low to cease taking it. Fatigue is the biggest SE I've noticed. I usually can push through it. Sometimes I get mouth sores. Salt water gargle really helps. I should probably do it every day, not just when I notice mouth sores. Hair thinning is frustrating. My Oncologist says it is probably the Arimidex, and not the Ibrance. From what I understand, Ibrance targets the cancer and is a targeted chemotherapy drug. Mine used to come in a "chemotherapy" marked package, with warnings not to touch it, and other warnings. The Arimidex as a hormonal therapy drug given to post-menapausal women with ER+ cancer, to shut down estrogen production. Arimidex also has SEs, including bone thinning, which your DR should monitor.
0 -
Mls1 - congratulations on the tumor shrinking, hope it shrinks into oblivion and never comes back!
0 -
pennythepest - I asked recently "how long" on Ibrance. And it sounds as if it is unknown. I think there is a concern, that at least in some patients, the cancer is still there, but undetectable. So the drugs continue, to keep it beaten down. Has anyone else "how long" ?
0 -
I was told by my MO that I stay on Ibrance until it fails to control the cancer. Then we will try something else. I don't think there's an off ramp for medication once you are metastatic and being treated, unless perhaps if you are oligometastatic.
0 -
Hello everyone! I am joining all of you very lovely people here and I have been reading back over the posts here to get an idea of what Ibrance will be like. I have just started my first dose yesterday. I recently was diagnosed with mets to bones and multiple nodules in the lining of the lungs. I had been stable for 3 years but recently my CA 15-3 levels rose and I started having symptoms like pain when I breathe in. After a CT scan, bone scan, and biopsy they confirmed that it came back. I feel like I was just quickly dunked into all the emotions and weirdness of adjusting to this and I'm mostly just staying at home unless I have to go out for a scan or treatment. This year really needs to just chill out for a minute!
I got my first Zoladex injection last week to put me into menopause. I got my Faslodex injections yesterday and started the Ibrance yesterday also. I am hoping with this combination that I can start getting this under control..I am noticing at night right now that I am having more of the pain where the cancer is - in my hip bone and the sharp pains that come and go when I breathe in deep. Did you all have this experience where there was more pain right after you started treatment and did that subside?
Thank you and I am thinking of you all.0 -
Laastra,
I was on a bit of a different regimen than you (Faslodex and Verzenio) which caused lung problems. I am now only on Faslodex and Xgeva untl the lungs get better with steroid meds. I have the same mets and nodes as you. At first, the pains would be located in one area and then migrate to another area. I couldn't understand. After two months of injections and a month of Verzenio, I really have very very minimal discomfort at all. Fatigue? Yes....that's always my issue. My recent Cat scan showed remarkable improvement in the nodes and that was after this short treatment period. I wish you a healthy journey going forward.
0 -
Just a quick message to our new Ibrance Dancer friends:
Zip up your Hope Suits because this drug sometimes works pretty fast and sometimes does a slower dance but it can do amazing things!
Many have reported here that their tumors flared as the healing process began (sometimes making tumor markers rise) so don't let extra pain alarm you.
Estrogen suppression also can cause discomfort in joints and soft tissue so don't assume every new pain is cancer. That's hard sometimes!
Remember that you're taking an amazing drug that can work for a really long time with side effects, yes, but not like most of us have experienced on IV chemo. As others have said, the dose can be adjusted if your side effects or blood counts give you trouble.
May God give you peace and the confidence that newer and better treatments are in the pipeline. The old cliche of doing this one day at a time is good advice but I would add do it one joyful day at a time!
Love from PatGMc [3 years on Ibrance/Arimidex (100 mg & 75 mg) - 3 months on something else - back to Ibrance (75 mg) for almost 2 months now]
0 -
Pat,
I am not a newbie here, as you know, having found this thread almost a year ago now, but I have to say how much your always hopeful, always upbeat, always wonderful messages mean to me and, I'm sure, to all of us. Thank you for being you and keeping us all remembering that although we face a difficult disease, there is always hope and joy.
Bev
0 -
Pat— thank you for your uplifting words.
I am finishing cycle 3 which has been the most difficult thus far. Hoping a dose reduction is something that could make cycle 4 better.
My main SE’s seem to be lack of sleep and swelling starting in my ankles. I see my MO in a few days
0 -
I'm thankful for you sweet survivor sisters!
DodgersGirl, sometimes you just have to go into the doctor's office and stress that you're ready to exchange the current treatment plan for one with more quality of life for you. Don't ask. Tell! (Be patient with the dose reduction as it might be a month before you notice a difference.)
I do have a good suggestion for lack of sleep. If you start to practice some breathing exercises and meditation regularly, you'll eventually be able to put yourself to sleep with them. It works! Here's a website to get you started:
https://www.healinghealth.com/covid-resources/
Love from PatGMcCalm
0 -
Pat- omg, thank you. Will see if breathing exercises help. Thank you so much!!
As for telling MO I want a dose reduction, I have no problems at all tellIng doctors what I think. I am sure my chart is marked that I ask too many questions and have a strong idea of treatment paths
0 -
Yeah, DodgersGirl, I have that same chart!
0 -
DG - definitely ask for it. I dropped a step after my first cycle was giving me too many unpleasant side effects (well, they were tolerable and I was borderline) and its been (relatively) smooth sailing since.
Pat - i love your posts too. You keep doing you! (and that goes for everyone!)
0 -
Laastra and PNWGirl welcome!
Ibrance is a dance that i find much more tolerable dancing with than IV chemo. Having been fresh off AC+T chemo and mastectomy surgery to find out only a couple of months later "surprise! mets", I was really concerned how Ibrance would be. I thought to myself if its anything like what I've been through, the AC part or even the T part of AC+T I said no way jose could I handle more of that. Then I started the AI and the Ibrance and I thought hey, this isn't so bad. Comparing what I had done and this, I told my MO if Stage 4 treatment is like this and remains like this, while not entirely fun, I can do this, I can tolerate this.
QOL is so much better for me on this stuff than chemo. My only continual issue is with pain, has not improved. Have learned to live with it and ran through a whole gammet of things from over the counter stuff to gabapentin to medical marijuana before finally settling on Tramadol 50mg which I can take as needed up to 4 times a day, I choose to only take 1 a couple times a week just to take the edge off. My biggest SE with Ibrance are sores on my tongue (which heal on their own or with help, magic mouthwash or Colgate Peroxyl rinse), fatigue, and major gas (or muffin cutting, hehe), which I am famous for emoting and joking about on this thread. There is 125mg, 100mg, and 75mg dosing for Ibrance. I know during my first cycle they took blood beginning of cycle and midway during cycle (day 14) to see how my WBC counts did. My MO started me at 125mg and said we can adjust from there based on blood and SE.
I think the biggest part of Stage 4 is dealing with the emotional aspect, getting a routine that helps with coping, and rolling with the anticipation or the unknown of things or learning to handle them in time as you go forward. I am on my 6th cycle now, 125mg and tolerating it okay. Seeing MO on 30th. I think its almost time for scans again, probably will schedule them this visit, last ones were "stable", but have rising TM's last 2 months so we will see. How long on Ibrance is a toss up, some only 3 months, but there are several with 30+ cycles and counting under their belt on here. There is great support to be had here and no question is off limits.
Candy, I wanted to address something you mentioned about in person visits. I'm pretty sure my next appt will be a televisit, tho my visit beforehand was in person. It was totally weird going into a stark empty waiting room, normally the oncology wing is jammed but it was just me last time, so quiet. It almost felt like i was in the wrong place. Anywho, I like my in person visits, just something about them, don't like this whole telehealth thing, not the same as seeing your dr in person. Living in a virus epicenter makes me feel like I'll probably have to get used to this for awhile. Zometa is withheld indefinitely for now. I miss interaction with familiar receptionists and nurses. Doing things digitally only makes things feel all the more lonesome and I'm having a hard time adjusting to this. I miss my routine. Now it feels like I have to create all whole new one after the old was ripped out from under my feet.
Take care ladies!
0 -
Rabbit- I just hope my MO will do SOME visits in person. March visit was telehealth, and now April visit is too (even though we scheduled April one for in-person and then they changed to virtual appt the day before the appt). I am trying to get video capabilities, but I don't have it yet. So March and April visit is audio by telephone. That makes it even less like I am seeing my MO. And I don't agree with withholding our treatments--your Zometa. I am late on my injections of Lupron and Xgeva, but we are still scheduled to do them. I will put my foot down if it is suggested that we cancel them. I am stable and I don't want to cancel my treatment and possibly let the cancer take hold. The virus can try and get me, but I am going to continue to fight this cancer with the scheduled meds.
0 -
Need advise from Ibrance ladies-----
I had my MO office visit by phone this morning (lasted exactly 7 minutes). I am going to office this afternoon for monthly injections and blood work.
My MO mentioned possible Neulasta injection if my ANC is below 900 this time. I run 900-1000 ANC each month at the end of my week off. We have COVID in our area. I am staying in my home except for groceries and this afternoons visit. Oh, and I have CT scan due next month.
Do you guys think that a Neulasta injection this time is ok?
I am on 75mg so I cannot go to a lower dose. And if I delay starting the next cycle for an additional week it will still drop when I do restart the med.
I had Neulasta when on IV chemo, before Ibrance use.
0 -
Candy I had neulasta twice while on ibrance. If I’m not mistaken the give you the shot and you have to go back a day later to see how much the counts go up. If not enough then they’ll give another shot. Neulasta has its own SE’s but it works. I’m on a 100 wishing I was on 75 but just trying to work with what’s working
Tanya
0 -
Re: Neulasta
When I had the shot after IV chemo, I found something that made a huge difference in the side effects. Taking Zyrtec (antihistamine) the day before, day of and day following the shot kept me from having the bone pain. My chemo nurses started recommending that to all their patients with good results.
Wishing you the best, Candy.
Love from PatGMc
0 -
Got a phone call today from my onc office to schedule my next PET scan for this Wednesday (yes, day after tomorrow). Surprised me, but I'll take it. I was originally told to schedule it after May 1, but that's ok with me. Wondering whether things are slow for scans and they are trying to keep ahead of it all or is it that my onc is watching my slight progression so perhaps she is on top of it all--or it could be nothing. Just thought with Covid I would be delayed instead of this. I have not had any conversation with them for two months so nothing has changed. Now I have to wrap my head around scanxiety, meals tomorrow, and keeping calm about my safety at the hospital. Always something...
0 -
Hi, Candy. I just had labs done last Friday and you mentioning what your ANC number is made me look at mine, which is usually low also. The labs must use different methods to test because my number is 1.2 10e9/L with a normal range of 1.6-8.3. Even though it was below normal I got my Faslodex and Xgeva shots and started my 5th cycle of Ibrance. I remember the neulasta shots from 9 yrs. ago and I will never forget the bone pain. It hardly seems fair to have to go through that crap twice, but then there is nothing fair about cancer. By the way, I am also on 75 mg. of Ibrance. Good luck to you and everyone else here!
Love, Nan
0 -
Candy At what point during yourIbrance cycle did you take Neulasta?
Anyone else?
0 -
Hey guys thanks for all your posts. I got my lab results. WBC 1.8 but ANC 1600. Wow, haven't been that high in a long time. Usually runs 900-1000. So no Neulasta for me I guess.
Dutchiris- I have not had Neulasta with Ibrance before, this would have been the first time. I had Neulasta with IV chemo, BEFORE starting Ibrance.
IntoLight- In your pocket for Wednesday PET.
0 -
Intothelight I’m with you for your PET tomorrow
Tany
0 -
In your pocket tomorrow Intolight!
0 -
Intolight, let's do this! I'm praying for wonderful results and great peace.
Love from PatGMc
0 -
Candy, Wahoo on the white counts!
Love from PatGMc
0 -
intolight- praying for good Petresults!
0
