Ibrance (Palbociclib)
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Thanks Rosie, that means a lot to hear someone else got the same language
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Hello all.
Rosie and Sondra- Woohoo on "improvement".
BLMike- 3mm is not much progression, but ALL the spots growing sounds more iffy. Waiting 2 months might be ok so you don't move to another treatment too soon. And maybe Faslodex with Ibrance next option?
Pat- Bless you. I need to be reminded that God knows the future---my post on the My Husband, My Life... Thread.
Holly- Woohoo for your scan results!
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Holly and Rosie Great news! It's always good to hear positive results even if you're not on ibrance.
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BLMike - I am glad the MO called your wife and it is reassuring that they are not concerned. I have heard that the CT scans could be a little different depending on the angle or how they were laying. If my MO called with that information, I would consider another two months and then a recheck. But that is me. Please let us know how the appointment goes.
Thank you for all the kind words, too! Even if I am not on ibrance.
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Holly...I'm sorry. I somehow missed you in my post. Wonderful news!
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BLMike wishing your wife and you well, and that recent results an artifact of comparing different scans. Hoping bumping up the Ibrance to original dose, shrinks cancer growths.
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BLMike I had a scare early in my MBC journey where the “growth" seen in myliver cysts did indeed turn out to be a false alarm set off by different CT scans angles. A terrifying time. I pray for the same outcome here!
Hugs,
Penny
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Penny -- OMG! Thank you so much for posting that. I hope that it doesn't end up being false hope for us, but it's certainly good to know that it's possible to be a false alarm.
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MIke, I can't tell you how many people I've known who had things show up that either were gone at the next scan, were a different size, or were just something benign.
In 2012 I had my first scan in many years and 3 things showed up. One was in the liver and it turned out to be what my oncologist called "One too many Whoppers" - in other words, FAT! They biopsied one on my lower spine and it turned out to be benign (with my chronic lower back pain cured by its removal in the biopsy)! The 3rd was a hot lymph node on my chest wall which was MBC. Scans are not perfect and are sometimes just a loose guide about how to proceed.
I'm praying for your wife and all the other Dancers tonight!
Love from PatGMc (Finishing up CyberKnife tomorrow. End of the French Foreign Lesion!)
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pat you are really blazing a trail for the rest of us that is an inspiration!!!! I love you!!!! ❤️ thank you for being you! You really brighten up my day’s with your posts.
I want to see this little annoying bony progression disappear on the next set of scans!!! I am going to envision it!!
I may be leaving you all soon, maybe not.:.i think I may be possibly on my last round of I/L this Sunday? In a strange limbo. Leaving for Jamaica in 6 days! Coronavirus beware and stand clear! I’m coming through!! 😝 😜 😜 🧚🏾♀️
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Philly- Keep posting even if you move from Ibrance. We want to keep up with how you are doing. And let us know what your second line treatment is.
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Philly - Enjoy Jamaica! Just wash your hands like you're Lady Macbeth!
I'm in my off week of cycle 3. I had mouth sores for almost 2 weeks that are almost gone from frequent hydrogen peroxide rinses (very diluted). Blood counts low again, and finally I can delay the next cycle for a couple of days. My first CT scan since starting Ibrance is 3/20. Got the Ativan ready.
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Philly — party 🎉 like it’s 1999!
But don’t forget to post at least twice a day — or we’ll miss you too much. 😊❤️
Hugs,
Penny
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Have fun in Jamaica, Philly!
Hugs to you, Pat....miss all of you guys!
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Philly said, "Enjoy Jamaica! Just wash your hands like you're Lady Macbeth!"
I heard of a better idea, LOL:
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My man crush. Definitely easy on the eyes 👀. Lol
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Have fun Philly!
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Hello everyone! My first post on this thread....I am starting my third round of Ibrance next week (delayed a week due to low white cell count). I was on 125 mg for two months (and Foslodex plus Xgeva injections) but have been reduced to 100 mg now due to low white cells. My MBC is in my skull, spine, rib cage and pubic symphysis. My CA27.29 went up to 44 in December and they started scans and found the metastasis in my bones. I was first diagnosed with Stage III in May 2010 and first treated for metastatic disease in one spot only in 2018 and again in early 2019 (SBRT radiation knocked it out). Now back to present day......I was encouraged that Ibrance/ Foslodex were working, since my markers went down the first month (January) by 10%....but the new test has them increasing by 25%. The nurse said the oncologist was not concerned as this is very common. But it worries me. I will probably be scanned next month. Has anyone here seen their markers fluctuate like this? Love and prayers to all hfor healing grace and mercy ♥️.
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I'm starting my second cycle today. Does anyone know if the white blood cell levels continue to drop the longer you are on Ibrance, does it drop and then level off after a few cycles or something else?
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I called Pfizer last week and asked when the pill and blister pack will be available. The tablets will be available sometime in April and you will be switched automatically. It was also noted that the tablets are dairy free and gluten free. The capsules were not. You can still take the tablets as you like with or without food. I hope this helps
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Sharware- Welcome to the club no one wants to join. Tumor markers can be a reliable indicator for some people and not for others. Sounds like you have been having them done for sometime though. So you and your onc may know if yours are reliable for you or not. I have read on here that one can see a spike as the tumors die off, so maybe that is your case. Mine fluctuates and always have. My MO says they are not a reliable test for me so we switched to every other month testing instead of monthly--just to keep some watch on them. But I think most oncs do not change treatments based solely on the TM's---scans are the indicator if things are getting better or progressing.
Cowgal- I have been on Ibrance for 28 Cycles now. At first, we checked the ANC blood count every 2 weeks, but now it is monthly- at the end of my week off. 2.5 years into Ibrance and my ANC level is 800-1000 on that week off. So I stay low but stable. We do not draw blood DURING the cycle so I don't know how low I really go. Probably best not to know. Hahaha.
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Sharware and Cowgal, welcome to this thread although I am sorry you both have to be here.
Sharware, markers are not reliable for some of us so I can't really help you here, but others may.
Cowgal, white blood cell levels rise and fall depending on a lot of variables, but not necessarily the longer you are on Ibrance. I have been on 125mg for 3 1/2 years and my levels fluctuate all the time but the trend is pretty level. Lately they have actually been better than last year. Others may chime in with different stories as you will discover we are all different.
Thanks for calling Diagram. My pills this cycle are the same capsules.
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Thank you, Candy and IntoLight.....my markers are very reliable and have always been an indicator of what’s going on in my body. I have friends that have low markers with mets, so it’s not dependable for everyone. I have been reading this thread for a few months and have gained much inspiration from everyone here. We are lucky to live in a time where there are many choices for treatment....,and that we have a place to go for support such as this breast cancer organization. I’ll keep you posted as I travel along with you all..... ♥️
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Sharware,
I have just started on cycle 8 of Ibrance/faslodex. (Ibrance 125 the whole time). My mets are in my liver and possibly in my spine (bones look sclerotic on my most recent CT and even before, so I have another bone scan scheduled for later in March to see if that agrees).
My markers (my doc does CEA and CA27-29) move around quite a bit, and right now they are inconsistent with my scans, which say I'm stable. I don't know if that's good or bad -- but when I have a virus or even a cold, or a very slight temp from either, my markers will go up. I find it very upsetting. My doc takes blood every month for a CBC because of the Ibrance, so she throws these in. However, my numbers are nowhere close to normal (as yours seem to be) so my experience may not be helpful to you. My oncologist says -- well, maybe there's something brewing. My interventional radiologist says -- no, just things moving around -- not to worry.
But, of course, we worry.
Good luck with your upcoming scans.
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Hi Shareare and Cowgirl... welcome, but we know you do not wish to be here, same as us all. However if necessary this is a great place to be as the knowledgeable people, support and reassurance is phenomenal. Not to mention the humour and irony which we need to keep us standing!
I was told the side effects of I/L are not cumulative, so once you hit a level you should be fine. However we are all very different and like most folk here we have ups and downs. There is no real rhyme or reason. On the positive that means one crappy month doesn't mean every crappy month! However there are common themes.
We mainly seem to have issues with low blood counts, fatigue, sore joints/ muscles, mouth ulcers and possibly high cholesterol. However many of us are very physically active and enjoy walking/ running, cycling, yoga and other therapies like reiki.
You'll find your level!
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Hi Sharware your tumor markers going up can be whats called a tumor flare. from what i remember it’s the tumor dying and thr pieces of the tumor are entering your blood stream causing the rise in tumor markers. definitely look it up but alot of us have gone through it and i’ve been on ibrance for 2 years
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Has anyone had hair thinning or complete hair loss on Ibrance? I stopped my first cycle of 125 mg in the middle because of low counts, finished the second at 100mg and had to wait an extra week to start the third at 75 mg. Right away I noticed the hair shedding and now it's at the point where I bought a wig this week. It's not like when I first had chemo 10 yrs ago and was bald in no time. I don't know which is worse: bald or the scraggly mess I have.
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Hi Lee, My hair has gotten very thin too along with my eyebrows and eyelashes. I started taking 1000mg of biotin which helped. I have some new hair growth in the bald spots. I also use a biotin shampoo and conditioner. I use rapid brow for the brows and rapidlash for the eyelashes.
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Hello Sharware and Cowgal - so sorry you have joined us but put on your dancin shoes and welcome to the Ibrance Dance! We do have a lot of fun here and help one another immensely. There are so many brilliant and well-informed people sharing on these threads. Keep sharing, asking, venting, laughing, crying, dancing, living your lives as normally as you can! We are all here for one another!
Thank you dear friends for your well wishes with the upcoming trip to Jamaica. I leave in 5 days!!
Of course I caught a cold that started on Wednesday night. I think the stress finally caught up to me from the whole petscan shenanigans. I am not feeling too badly, just sore throat and cough and low grade fever which seems to have broke. I am hoping that I feel even better tomorrow! I don't want to be sick in Jamaica! Nothing that that amazing sunshine won't clear right up!
I promise I will keep checking in and I know myself too well to know that I will totally end up checking my phone even when I am on vacation, so I will try to take some good pics and share.
Hugs and love,
Philly
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Lee, Yes definite thinning over my first year. I had thick hair to start with and never appreciated it. Now I miss it. I need two weeks to restart about every 3 cycles (still at 125) but my MO doesn’t think it’s any problem. She seems most interested in my level of fatigue which is not too bad right now.
Simone, Thanks for the tips!
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