Ibrance (Palbociclib)
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Chowdog, I'm up late and see that you're a brand new Ibrance Dancer! Welcome to our little corner of the world. Let me tell you quickly about my friend, Judy, who like you has had MBC spread to her lungs, her bones and her brain. This was in the days before we even had the magic drugs we do now. She has been cancer-free and out of treatment for many years. I wish I could remember exactly how long but, trust me, we're talking 2 decades since the lung mets. I'm sure it's been at least ten for the others. She had Gamma Knife on her brain and not a single spot has ever returned. She had something show up on a scan of her brain the next year and insisted that they do a craniotomy to remove it. It was nothing but dead tissue! She runs a family business and no longer even gets scanned regularly.
I was diagnosed the first time in 1994 with IIA and have been around the block a time or two or three or four with BC, first metastatic in 2012 with a chest wall tumor (Taxol/Carboplatin=NED). The widespread bone mets showed in September of 2016 and I've been on Arimidex, Ibrance and XGeva since. First scan at 3 months showed a remarkable response and I have hardly any uptake on a PET/CT now! My doctor starts everyone on 100mg and I did that through 2017. I am now on 75mg and have much less fatigue.
I'm going to be praying for you as I do daily for our other friends here. We call ourselves Pioneers and many have done extremely well...either remaining stable or shrinking their tumors. You can do this and we'll be here for you all the way, Chowdog!
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Chowdog. There is a thread called Stage V. It was created by Zarvoca and is all about how exercise can improve your outcome. There's also one called Brain Mets Sisters.and a Bone Mets thread. I don't know if there's one for supplements, etc. But ladies do talk about it all the time. Husband 11 has great advice.
I've been on IF for 13 cycles for liver, lung and chest. It's so encouraging to have this thread. Glad you found us. 💞
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Hi - I posted this to the Ibrance + Faslodex thread but aim also adding it here in case anyone has thoughts:
hi - I am a bit new here and currently 15 days into Faslodex/Ibrance for a single bone met in my rib. The only side effect I have had is a runny but oddly very dry nose and almost non-stop light nose bleeding on both sides. My platelets we're normal and of last wed and this started only a few days after starting both drugs. Anyone else with this symptom or is it unrelated maybe?
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I just wanted to say hi to you all and tell you I think of you often! My mental health is just all over the place and I have trouble keeping in touch with people. I've been doing well and finally recovered from all the radiation and zoledronic acid side effects. I got a PET scan done in february which came back NED (although I have bone mets and those don't really appear in normal pet scans according to my doctor). Since the cancer seems to be still only in the bones my doctor decided to wait for progression before starting ibrance and use femara and faslodex instead. I've been taking letrozole (femara) for a while now, but will start the faslodex tomorrow. Would love to know what has been your experience with it and which things I can do to have less side effects. I will be reading the faslodex threads, but this is the part of the forums I feel the closest to. Hope you are all doing well, and thank you so much for everything.
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Pat and Grannax, thank you so much for your encouragement and advice... all in all, i am glad i have found this community (despite nobody wants to here). i have received tremoudous support and adivice from everybody, particarly thebrain mets sisters group. i will definitely check out the fitness group and search for advice from Husband11.
It was ovewelming at first, but i am well prepared to fight this as much and as long as i can.
all the ladies here rock!!!
Linda (aka chowdog)
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Hi Ceci- Good to see you posting and glad to know things are stabilizing for you. No experience with Fas yet, but others will have good info for you.
Welcome Chowdog...no one wants to be here, but the people are wonderful! I'm on month 28 with Ibrance and my extensive bone mets have been stable. Many others have had a similar experience. Quite a few have had good results with gamma knife, stereotactic and wbr (while brain radiation) for brain mets with manageable SEs (side effects). Check out the threads mentioned above. Exercise has helped me with energy, mood and retaining some muscle and strength. I enjoy hiking, so being out in nature is a big bonus. Eating healthy is always recommended.
IMHO, BCO is the place to find hope and get good info about what to expect from the various treatments!
We do use lots of acronyms, but they quickly make sense
Again, welcome!!
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Lauren Yes, I've had trouble with nosebleeds, sinus and sinus infection s. I know it's a SE for me from Ibrance. Others here have had it too. The nosebleeds got better. The sinus infections I've had about five where I needed antibiotics.💞
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Thanks Grannax - It is always comforting to know that someone else has experienced similar side effects.... Absent of that, I start to believe that cancer spread is causing these new symptoms. Hope you are doing well
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Thanks Iwrite!
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welcome chowdog, and welcome back ceci. I started cycle 9 this morning, now down to 75 mg due to chronically low neutrophils. My last scans at the end of February showed no activity in bone and shrinking liver Mets. On 75 my only SE is fatigue, but I work out 2* per week with a personal trainer at a gym, paddle with Breast cancer dragon boat team, and walk my dogs regularly. I have healthy 69 year old friends who don’t do that much. I remember how scared I was to swallow my first pills. You can do this
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Welcome Chowdog and Lauren and good to see you back, Ceci. I always have tissues nearby since I've been on Ibrance (13 months) and always have a pkt of tissues nearby nowadays.
Ceci..... My cancer is bones only, although extensive and yes, the only way for it to show up is via a bone scan. I'm given 3 monthly bone scans because I have a large loss of tumours and I'm in a trial. Sorry, I have no experience of Fasiodex, I'm on Letrozole (Femara)/Ibrance but I've heard good things about Fasiodex. I've been told that if Letrozole begins to fail we all turn to Fas but at the moment I'm stable. Yay!!
Hugs to all those whose posts i have missed xx
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Thank you Hobbes and Leafrog!
Your ladies will see my pop into the Stage V fitness forum shortly.
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Amarantha, I though you might get a kick out of him!! We all want to know where to sign up for an MO like that guy!
Kathryn- Good to hear from you! I'm just three months ahead of you in the Ibrance-Femara conga line...
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I think a lot of us have the burning scalp SE of Ibrance, so I thought you'd commiserate on this lol. I went for a hair cut and the stylist used her scissors to razor the back of my hair and to reduce some of the bulk back there. I thought I'd levitate out of my seat from the pain. She was pulling a little, and then the scissors pulled down even further as they ripped through my hair. Holy cow! It is nice however to have lightened up my hair. I feel very lucky that it came back thick as ever after going bald from chemo....but the combo of thin, curly hair and lots of it was doing nothing helpful for my hot flashes! (I do have thinning at the temples though)
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Hi all,
I'm on my first week of Ibrance after trying out Kisqali and it wrecking my liver. Oncologist says people tolerate Ibrance better -- I'm hoping so. I had a month off of Kisqali before my liver enzymes came down enough -- it was a nice month -- every day I became more and more like my old self. I was a bit sad the day I finally got the ok to poison myself some more -- but at the same time relieved, because who knows what the cancer was doing on its month long vacation from oral chemo.
I think all I'm dealing with at the moment is really weird joint pain -- probably the Femara since it really flared up in the last 3 weeks.
Anyway, just wanted to say hi and that I'll be slowing catching up on this group
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Jensgotthis, great to hear from you, hope you're doing well. I just saw that you went pretty quickly from cytoxin to Ibrance. Wow, what a road.
Welcome, tinyturtle, I know you'll find good information and support from this site. I hope Ibrance is kind to you, and more importantly, effective. I had pretty intense pain in met and non-met sites for the first 3 months of treatment. After that things settled down and my scans are now stable. So hopefully that pain means you're improving.
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hi, i am just starting on ibrance with estamastane. Am wondering if there is success for skin and bone mets
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Hi,
I have been on ibrance 125mg and letrozole since January 2015. My next scans are not until may of this year (2018). Im wondering if anyone has decreased their dose and if it was more tolerable. I am very fatigued and don't feel as though I am really living. Has anyone taken a break from this combo and if so for how long. My family and oncologist want me to continue with this dose because it's working. I'm just feeling worn out. I'm 52 and feel 82 lol. Any responses would be appreciated.
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LissaLou- Congratulations!!! Three years on Ibrance-Femara is FANTASTIC!! Thanks for sharing wonderful news!!
I'm in month 31 and hope-hope-hoping against hope it will keep working to year 3, because when the drugs quit working I expect to jump into a trial for secondline therapy, and the time to see the different trial results and figure out what that would be is so precious! I am also at the 125 level. Many have reduced the dosage of Ibrance without apparent consequence, but I'm too chicken- one of the ways MBC can overcome Ibrance is through mutations that upregulate CDK4,6 activity, so I'm afraid that if I lower the dose I'll just be making it easier for the cancer to overcome the drug and progress more easily or quickly. I do feel sleepy in the afternoons and am not total fine energy-wise, but for me its so minor and have so much stuff going on in my life right now that I would hate to have to leave this treatment..
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25 cycles on 75 mg. Stable disease. No side effects. You deserve to feel better. Now.
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Hi Lissalou, I have been on the same meds as you for 22 cycles, and yes, I am tired. But I agree with Cure-ious that I am going to stay on 125 for as long as I can for the same reason. I don't want to give cancer any weakness to come back. But it is really your decision, and 3 years is a long time to feel crappy. I know that depression is a real thing and I worry that is happening to you. it is worth a discussion with your onc. Can you call your onc nurse? Perhaps there is something you can do that doesn't involve reducing your dosage.
I am having a rough week as it is my week off which sometimes happens to me. I also get a bit depressed this week. I make it a point to get outside in the sunshine when I can, and I have increased my walking as it also seems to help. Take care. And let us know what you do.
Chris
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Wow Lissalou - 3 years of stability makes me happy, but I can’t imagine what it’s like to have that level of fatigue for that long. I read somewhere that lowering the dose is more effective than taking time off but your doctor would have to confirm, should you decide to make a change.
I will take my 21st Ibrance pill tonight. Yesterday my absolute neutrophils were 1.4. Can I expect my levels to get better during my week off such that I can continue with the 125 dose on schedule?
IntoLight - what do you attribute your rough time during your off week? Just trying to figure out what to expect.
I have not really had much fatigue - but I have sleeping issues —- I can’t fall asleep until usually about 2 or 3am (and that’s with Ambian) and get up at 7 so i don’t get much sleep. With ibrance I’ve sort of normalized in that I amfalling asleep earlier and still getting up at 7 so I am actually getting more rest than before. Strange
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Lissalou....I'm on a trial so I have to follow the trial protocol for my dosage of Ibrance. When my neutrophils dropped to below 0.5 after one week's break, I was put down to the 100mgm dose and my MO told me that he had been wanting to do that for some time but couldn't until I dropped to that level. I'd previously always been about 0.6 after one week's break so had to stay on 125mgm. He told me the drug is just as effective at 100mgm. I think it was you asking this question. I've scrolled back over this thread three times to be sure but my memory is hopeless today so I hope it was you asking.
LaurenH.....this would answer your question, in part. Yes, you can expect your neutrophil level to rise after a week's break. For me it doesn't rise high enough, unfortunately so I need two weeks' break. Last cycle, after one week my level was .74 and after the second week it was 1.4 (the same as yours is now) so you should be fine. For me to start a new cycle I have to get to at least 1.0.
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Ladies, I know we have discussed tumor markers before---I think in this thread. I think the consensus is some docs use them and some don't, some take more stock in them than others, etc. I had my tumor markers checked this week. I have only had them checked 3 times so far in this journey---at diagnosis in Sept (mets diagnosis), in Jan. and now. The CA 27.29 was 49 in Sept, 35 in Jan. and now 44 !!!!! I see the MO next week to discuss the results ( I got a copy of the results before talking with the Dr.).
I am freaking out !!! They dropped from Sept to Jan but are coming back up ---almost as high as at diagnosis.
Could this mean I am progressing???!!!! I have been having a tough time regulating dose of Ibrance (see previous posts) and am now on every other day 75mg dosing.
Can the tumor markers fluctuate?
Any of you with markers that went up for one reading did your Dr. recheck them or do scans or what?
Thoughts......
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I'll let more experienced folks than I respond, but I don't think that those would be considered "scary" numbers at all. And yes, they do fluctuate, and in some cases, quite a bit. My onc doesn't put any stock in mine, as they don't seem to be an indicator of anything.
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Aramantha
André Fabrice is at Gustave Roussy - Paris.
Try the email.
fabrice.andre@gustaveroussy.fr
( the "e"needs an apostrophe !! )
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Thanks, JoynerL.
I know some have posted their numbers in the hundreds. Mine at diagnosis was 49. But my mets is to bone and liver and the liver mass was 8cm on diagnosis. Pretty large mass but yet CA 27.29 was not that high. I don't really understand all this.
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Candy, I wonder if perhaps yours aren't a valid indicator, either? My doc said that for some people, they just don't "work" as a valid indication of activity.
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And my doc seldom bothers to check them, for that reason.
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Morning All -I am thrilled to say I am starting cycle 2 of Ibrance 125 after a 3 week break! After 1st week off neutrophils were .3, second week .7, finally yesterday 2. I am so very relieved and really hoping they 'beef' up quicker this second time around.
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