Ibrance (Palbociclib)
Comments
-
So sorry, Zills. Seems there are several people on here who doing well on lower doses. Are you going 100 or 75
0 -
Sorry Zills, yep my daughter is also very upset. This time Onco told her to take 125 every other day till she gets the new dosage of 100 delivered. How low were your counts? Was it the Neutr % or Lymph% or wbc, i would be interested to know when other docs feel Ibr should be held back.
0 -
For those who are wondering if the 75mg dosage is effective:
For me, YES.
Results from my CT Scan and TM's after 7 cycles.
No pleural effusion, stable results, some tumors have decreased in size and TM's steadily decreasing. NED anywhere else except the lungs. (My original Dx)
SE's have been minimal.
Counts are low again and I will take another blood test before restarting. I am very grateful to my team as they are very responsive when I ask questions either in person or email.
It is not uncommon to have low counts and different onc's have various opinions on how and when to lower dosages. Also, many order other tests and they evaluate everything all together. It is important to trust your team, ask revelent questions and read.
Bestbird has a excellent reference which is available to anyone.
Kathy
0 -
Awesome news, Kathy!
0 -
I'm going to 100. I think it's my wbc but will double check. I want to make a chart. He said he was worried about me tanking on day 14 with starting out low.So ... He's the boss. He's listened to me about other concerns and changed things but he's holding steady on this. Must trust him. Also that gives me another week to get ready like clean house, get taxes done, ...
0 -
Congrats Kathy! Good to know 75 is effective so we can be here for the long haul!
0 -
Congrats Kathy. So happy Ibrance is working for you- and at a lower dose
Babs
0 -
75 mg for me also. Seem to doing well. Stability on first scan. Levels too low to go higher
0 -
Hi all,
My onc originally did not due MRI of brain A as she stated there were no symptoms to indicate it had spread there. She did cat scans on other areas of body and they were neg. about 6 weeks ago got an episode of extreme dizziness that went away, but still felt fuzzy for about a month. Symptoms are now gone. MO thinks it was vertigo. I asked about brain MRI and she said there were noindicators of brain mets. I am thinking of pushing for MRI but wondering if you wonderful ladies know of any reason I shouldn't. I know there really is no radiation with the MRI right?
0 -
Singlemom, I'd be wanting some type of brainscan too. But, I will say that in a couple of my early Ibrance cycle I had some dizziness and times I felt faint and it was actually from low sodium. Best wishes to you. It can be scary
0 -
Singlemom. No there is no radiation in MRIs. My mo ordered one for me shortly after dx and finding out the results were negative was such a huge relief. If it is a big worry for you, press for that scan. I would add though that there are lots of reasons for occasional dizziness and my mo has since told me brain mets are more likely for her2+ gals, so probably nothing for you to worry about.
Kathy, so happy to hear of your good results at 75mg. I hope it will help others have confidence that a lower dose can still be effective.
0 -
I hope it is ok to join. I will be starting Ibrance as soon as my insurance gives the authorization. Hopefully by the end of next week. Any advice and preparing for this?
0 -
Welcome phrogger. Sorry you have to be here, but it's a great place to learn and feel supported.
There is no real preparation except to treat yourself kindly, eat well, and be ready to rest when you need. The most common se we have shared is fatigue from low blood counts. It probably won't hit you immediately. For me, the last part of the first few months were the hardest. I'm starting cycle 10 tomorrow. I still get tired, but rarely have the wiped out feeling from a few months ago
This is a great group of helpful ladies!
0 -
Thanks for the kind words.
Proffer,
How to prepare? Not an easy answer, since our bodies react differently to this drug protocol, however, many of us experience low blood counts, fatigue, mouth sores and other discomforts, which generally go away.
What is important is excellent communication and support from your treatment team when you have symptoms, either physical or emotional, no one receives their Dx with joy, sadness and anger can also be a SE.
There is a lot of info on these forums, scan back and read, but keep in mind their symptoms may not apply to you.
Warm wishes from a "fellow lung diagnosee"
Kathy
0 -
Hi Phrogger! Everyone tolerates Ibrance differently, there are 3 dosages: 75, 100 and 125mg. I am on 125mg - this week in round 2 my Hemoglobin crashed to 6.0 and crits to 22.3, so had a transfusion for the first time ever of 2 units of packed blood yesterday. I feel lightheaded and weak. I go back in two weeks to check my counts - hoping to go to lower dose of Ibrance. Tolerating Fas shots very well. Kaption what dose are you on? Delighted to see you in round 10!
0 -
lalady, I'm still on 125mg.
0 -
I'm on 125mg since June. I had a small dip in blood levels at first, but bounced back to normal range and some minor SEs.. Good luck.
0 -
I'm at the end of cycle 4. Very tired right now. Kapiton- I'm happy to read that as time went on you feel better--
0 -
Hello Phrogger,
The short story for me has been that this drug is doable and I can pretend to be normal most of the time :-). I started out with a Stage IV dx and it seems less intense than what folks have experienced in earlier stages.
I'm on the second cycle of the 100 mg dose after my platelets tanked on 125. Needed to be off the drug for 3 weeks. I'm tolerating this lower dosage much better. Recent scans show improvement so I'm confident about the protocol at this time. The hot flashes are annoying and they worsen when I'm on both the Letrozole and Ibrance, but manageable. I had mouth sores with the 125, but not so far on the 100. My mouth is tender the third week, but it didn't get worse than that. My hair is a bit thinner, but not noticeable to others. My skin feels like it's on fire the first few hours after I take meds and it feels paper thin at the end of the cycle plus there are some red spots so I try to treat it more gently then. The fatigue seems to have lessened with each cycle for me, but I'm not trying to manage a job and active family and can take a nap when needed. My guess is that this can be more of a challenge for our younger club "members."
Take care of yourself and best wishes on successful treatment! The ladies here have been seeing good results which is encouraging news.
0 -
phogger
I finished my first cycle of Ibrance. My ins was approved the first day. Check out the co pay asst if they didn't already do that.
I had to take a week break and go on a lower dose. Two main things I wish I did and will do this next round. Do what you need to do the first week/10 days. Mine would be to clean house and make a few freezer meals.
Then I'd have something for those really tired nights and I wouldn't be embarrassed to take someone up on their offer to help.
Other SEs don't seem to last very long. Just ask and someone will be able to tell you how they coped.
0 -
Kathy thanks for the heads up. It's great to hear of success.
Phrogger...good luck...
So the lower dosage for 100 was ordered on Wednesday, I spoke to the office on thursday and asked them to make sure it gets expedited, then on Friday, we were waiting for the delivery, it turns out they need more info from doc, so nothing is happening probably till Tuesday for sure. Whenever I think, ok it's being taken care of, it never is. Always the triple checking. So since last Tuesday Dani was put on 125 every other day. Her Pltls were low, 56 so I hope it's not too bad, we only will know on Tuesday. Does this happen to you ladies also, that you have to halt the tx BCS of waiting for delivery from the Pharmacy?? It's so nerve wrecking.
0 -
Thanks ladies. Seems like fatigue is the biggest issue at this point. I am pretty exhausted all the time anyway. I volunteer with my kids high school, I am a full time nursing student and I do 14 hour clinical shifts, but I have to just push through, not much of a choice there, in the hospital I just have to do my job. Luckily I don't work outside of school so there are two days a week I can catch up on sleep and weekends of course as well. Luckily, 3 of my 4 are teens so I make them do a lot of the extra stuff when I am too tired or busy, so they will just have to get used to that. I might ask my oncologist about supplements and if I can take them to help with the fatigue. I sometimes take B12 and that gives me the boost I need. And vitamin D as well during the winter to help boost the immune system.
0 -
As someone mentioned, those of you who have many responsibilities do have real challenges to your stamina. I'm retired and have a helpful husband. I know that makes a BIG difference in how I pace myself. Balance in activity and activity are key to my stamina and pain.
0 -
Wow, all of you sound sooooooooo amazing! I wish I had just a speck of your energy. I have fibromyalgia on top of all this so I am pretty much in bed most of the time. I have to take pain meds to get out and to stay out of bed to get anything done or to go to the doctor. Maybe you can think of me on those days you are dragging through work! Lol! I would love to go to work again. On another note...
Did anyone experience a headache from hell the entire day and night the first day off the Ibrance? That was me yesterday, and wow, it was almost like a hangover! Still kinda hurts a little today, but not as bad.
Welcome Phrogger!
0 -
NicciJ, so sorry to hear of your additional struggles! Thoughts and prayers with you!
I have not had additional headaches, but others have reported them.
Best wishes to you
0 -
NicciJ, I haven't had a headache on the specific day you described, but I just got through 3 days of a bad headache, which has happened to me during previous Ibrance cycles.
And this has got to be extra tough to deal with on top of a fibro dx. So sorry to hear that. Hopefully, as your body gets more accustomed to the Ibrance, some of the SEs will ease or go away completely.
0 -
Phrogger - I work full time in my 50's, please get things organized first week of Ibrance (when energy is up). The crash of fatigue hit me about day 14. Pfizer has a $10 copay, so please hop on that plan. Meds are delivered to the house from special pharmacy (depends on your insurance). I have mets to left lung and sternum. My trouble has been with pleural effusion (left lung filling with fluid), getting it drained every 2 weeks. But everyone is different. Suggest you get teens to help more with household chores asap so you don't tire out. Nursing is hard enough - let alone with lung mets. Ask your onc about faslodex shots, they can help too. Iwrite - my skin is dry as Sahara so purchased heavier day creams. Rooting for you, congrats Kathy and other ladies too!
0 -
thanks for the tip about the medication co pays, I am very very very lucky that my husband is active duty military, I basically pay nothing for anything except my travel expenses, but if I have problems with it, I will be sure to look at the help with the co pays.
0 -
Question... There's a discussion about Ibrance induced aches & pains on the FB Ibrance thread, and when I brought up curcumin, someone commented, "You have to be careful with curcumin as it metabolizes in the liver and may interact with ibrance." Has anyone else heard or read this? I take curcumin for relief from joint pain, and I actually had started taking it at a different time than Ibrance to avoid reflux or other gastro distress. But I wasn't aware that there might be some interaction, and of course I'm concerned. I'll research it, but just curious if anyone knows and can explain it. Deanna
0 -
Hi all - Just finished cycle #6 and had second PET/CT scan with no uptake in any areas, so nothing showing as active. For those wondering about lower dosages, I have been on 75 for several cycles also and my tumor markers are continuing to drop although more slowly now. Me, I'd just like to take a quick elevator ride straight down into the normal range with no stopping
NicciJ - Don't worry about having markers at 51. There have been several women on the site with markers in the high thousands that dropped as they had various treatments. Docs more look at the trends in your markers than any specific individual number, and markers are not reliable for everyone. My own CA 27-29 started out at nearly 1100 and my latest was down to 135. Ibrance/letrozole is my firstline MBC treatment.
Zils, I was disappointed to be dropped in dosage also, but my neutrophils are just barely hanging in each month to restart even on 75. We are all unique! So trying to just focus on positive direction although it's hard not to want to have the maximum blast, isn't it? On the good side, the side effects are reduced on lower dosage.
Momall - Sorry to hear Dani's shipment was delayed. You're right, it's nerve-wracking getting everything set in place, but once it is, you kind of get into a rhythm with it. After the first delivery, my pharmacy has been great with timely deliveries.
Wishing everyone success with their treatments.
0
