Ibrance (Palbociclib)
Comments
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Way to make our day, Joyner!! I'm so thankful for your great results. What special thing are you doing to celebrate? Think of us in a parade with you waving NEAD flags!
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So many new entries, almost impossible to keep up with!
Joyner: great news!
Blueshine: I am not an expert on red blood cells, but I believe that certain variances can occur. I personally used to have (when I was still healthy) rather small and hemoglobin-rich red blood cells and I could always see a change after returning from skiing vacation in high altitudes. Therefore I believe that a certain change will most probably occur when taking Ibrance. If it is a problem, the docs need to tell. Mine did not talk to me about my red blood cells at all, only white blood cells and once platelets (the latter were slightly on the low side, but not severe).
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Hope991, my treatment will stay the course. My onc said that it's working, so we'll stick with it! I think that I failed to report to you all that he also told me that he wasn't going to schedule my next scan (he has been doing CTs every 3-4 months and then this PET scan since I started treatment) but that he would see me in 3 month (I'll meanwhile be continuing exactly my same regimen) to decide whether to scan or to wait further. He suggested that unless or until I have a symptom, he might hold off. That stance to me seemed a very good sign of his positive outlook for now.
PatgMc....[don't tell anyone....but I'm celebrating by having a martini.....bad, bad, BAD!]! I'm thrilled. Obviously we all know that this will change, but I'm celebrating now! I'll bet that many of us are considered NEAD (or NED) but that our oncs similarly don't use the perhaps misleading term. I thought that NEAD meant "No evidence of active disease". NED is perhaps a variation at "No evidence of disease"? Guessing.
On a different note, I recall that when I was first diagnosed in Feb 2017 my pathology report noted something about the blood cells which, when I Googled it, said that it meant larger than normal red blood cells. I pressed my then onc about it, but no one seemed at all concerned, and I never got a real response.
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Joyner, I live here in the land of Optimism and I won't be surprised if this is your cure! I feel confident there will one day be a regimen of stepping people down to lower and lower doses of Ibrance. I keep remembering the trial at MDAnderson that has people on 25mg + a drug to stop the cells from recognizing and rejecting Big I. The picture of that one stays in my head all shiny and ready to be announced and celebrated! Here's to the future and here's to today's pioneers sitting right here at these computers!
Let's Break-Dance!!
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Patg, I LOVE this!!!
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Joyner - I LOVE ❤️ your news! So happy for you! Your onc sounds like a great doctor and I'm so pleased that agreed that you are in fact NEAD and i hope and pray you stay there forever!
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LOL- Love the break dance! Is that Ned out there??
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Great news indeed and I too got good results from my contrast ct and bone scans today. My RO says it looks like decreased activity in my bone met and no signs of other spots, YAYYY! They ct showed a possible cyst in the pelvic area, which would not be worrisome, except that the bone scan doctor had a 3D image done on my pelvic area after viewing the first 'pictures', and I am being referred for an ultrasound. Does this seem worrisome or ?? Thanks everyone, happy Wednesday evening...
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Janky, congratulations on your good results! I won't be surprised if your cyst is gone by the time they ultrasound it. That's my prayer.
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congratulations Joyner in being nead! It's great to know that Ibrance really is doing what it was meant to do.
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PatgMc - that is what the RO said too, she did not seem concerned so I won't be either...
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Janky, we'll see you back here for a "Cyst? What Cyst? Party"!
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PatgMc we will Party Hearty indeed!
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Joyner, Fantastic News!!! How wonderful, you will sleep so soundly now!!! No substitution for that kind of good news!
We know that our cancers can mutate different genes to escape from Ibrance-Femara suppression.The list includes:1) estrogen receptor mutations (would be sensitive to Faslodex but not Femara) ; 2) PI3kinase activation (no longer dependent on estrogen) ; 3) mTOR kinase activation (no longer dependent on estrogen); 4) FGFR amplification; 5) RB1 gene mutation or other genes in that pathway, and I'm sure there are others I am not even remembering.
I had the option to join a trial that combined PI3K inhibitor with Ibrance-Femara, but knowing there are so many different ways the cancer can escape these drugs, I'm glad I declined that option. Because now we know that the cancer has other ways to escape the drug anyway. We'll see when the trial reports if most people got much lots longer on it than on Femara-Ibrance alone. I am so grateful for everyone who does ANY trial, so that we get answers!!!!
I will push to learn the genetics of the mutated cancer cells are when it pops back up again before deciding how next to hammer it.
And your MO is correct, the longer we get, the more things could potentially be known about other treatments. Keeping my eye on that Keytruda- Abemaciclib combination trial!!
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In case I didn't mention this....my tissue was sent off for the Keytruda test and came back negative. On that same day Oncology Business Review reported that there had been a problem with testing of whatever made one a candidate. (I'm so non-scientific...thank goodness for our Cure-ious!) Hopefully, they'll get that ironed out soon.
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So difficult to keep up with names. But know I am learning with each of your posts..Two things...About someone not accepting help ..read somewhere long ago...we should and it helps those who offer. Had a gal ..much younger then me ..well I was RN in delivery Room when she was born .her mom and I friends for yrs..Anyway she asked a 2nd time if she could do anything..I replied come visit us the weekend after my mastectomy not just for me but for my guy ..he so enjoy s her company too..to give him a change of scenery and a different conversation..She said see u then!
Also someone mentioned she does not like touching Ibrance My onco med pharmacist who I had to call when I was having script sent. said not to touch it..put in the cap and take from there..
Nite to all!
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Joyner, so happy to hear your great news!! Woohoo!!!
Janky, happy to hear your good news too!!
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Received my scan results yesterday and they weren't what I had been hoping, though they weren't completely bad. Sorry this is going to be a little long as I'm hoping for some insight.
MO says "mostly stable". Most nodules that were under 4mm were the same size from last scan (January) and one was barely visible on this scan. But there were two areas that measured slightly larger in size. On screen one of them looked the same to my husband and I as well as my MO... but the radiologist measured it 1.7x1.4x1.0cm today from 1.5x1.0x0.8c in January. It's heart shaped so MO says it's hard to measure and can be different depending on the axis points. A second nodule measured 0.6cm from 0.2cm and was visibly larger than last scan. Everything else was stable and there were no new mets anywhere else. Also, tumour markers came down from 35 to 27 almost in normal range which leads me to hope that maybe the nodules are not active. Hard to say without a PET scan.
My MO was happy with the scan which made my family feel better but I am discouraged. I fear this might be Ibrance levelling off. I could use some encouragement or first hand experience where perhaps things didn't grow after a scan result like this. Anyone else have similar happen?? Or thoughts on these mixed results? Appreciate any insights or thoughts.
Another thing my MO mentioned was that sometimes scans being read by different radiologists can be measured a little differently. The other thing that can cause slight variability and error is positioning during the CT. (I feel like I'm grasping for anything at this point) But I've also read a piece on the "coffee break" studies where they scanned the same patients 15 minutes apart and measurements were different by 1-4mm in some cases. I'm hoping this is what has happened for me... but having seen the one nodule on screen that was visibly changed I do worry that this may be an indicator that next scan may show progression. Feeling pretty bummed as I've only been on this for 6 cycles and the 75mg are just now something that I'm tolerating... (maybe even the reason for the results I just had?) I hope not because on 75s I feel like myself most of the time and energy has been pretty good. After having such a great early response I was obviously really hopeful that we would have seen more shrinkage of the nodules.
We talked next line should there be progression in July... If there is minimal progression then possible Fulvestrant from Letrozole. But if more extensive then a Platinum chemo (because of my PALB2 mutation) OR... targeted radiation to the "problem" nodules. I vote rads. But really I vote to stay on this combo and hope I can.
Joyner & Janky: happy to read your awesome news! Joyner how long have you been on Ibrance now? Over a year? NEAD is amazing!
I can't remember who was talking about RBC counts and RDW and MCV etc ....mine do the same at least once a month. This cycle was the first one where my neutrophils counts came up during a cycle. Happy to have found the dose that has been tolerabl. Hoping that I'll be lucky enough to continue on Ibrance longer after another scan in three month.
Cure-ious: always love your research updates and knowledge about what's ahead
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Ashlyn, I've been on this breast cancer train for 24 years and directed a cancer support center for almost twenty of those so I've had a gazillion survivor friends. Some of them opted to have "things" that showed up on scans surgically removed and, you know what? Some of those "things" weren't cancer at all! One of them, my friend, Judy had brain mets from breast cancer. She had Gamma Knife to zap a large tumor at the base of her brain. A year later, the scan showed that tumor was back so Judy opted to have a craniotomy to remove it. That "tumor" was nothing but radiated mush. (I can't remember how many years that has been but it's been quite a while...years! Judy is happy and well and not on any treatment in spite of also having had bone and lung mets!)
I feel confident that many of the things that scare us are not worthy of our time and anxiety. Just looking at those numbers you wrote, it seems that there would be lots of wiggle room on those measurements. I can't imagine that your doctor will take you off Ibrance based on those. It would be interesting to have a scan on a different machine, wouldn't it?
I promise to pray for good things, friend.
PatG
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Janky, HOORAY on the great scan results! Go kick up your heels!!
Ashlyn, I'm about to start my 16th cycle of I/F. My stealth radiologist friend (who secretly reads my scans and reports to me before they are "officially" read) has told me that different radiologists can measure the same nodule and get different results. I do understand your concern about the obviously larger one. We have all been told through this string that it can often take 6-8 or more cycles of Ibrance before its effects begin to really show up. It sounds as though you have stability in the bone mets, which is great news!
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thanks for chiming in PatgMc and Joyner. I don’t have bone mets. Only lung nodules. I already had good early response showing Ibrance was working before. So this would either lead me to believe that it’s measured different (like your radiologist said too) or Ibrance has stopped working. Pat, I appreciate your stories so much. So awesome to hear about your friend. I don’t know that we would surgically remove the nodules though as I still have several smaller nodules. I mentioned surgery to MO before and she said no point. Hopeful radiation maybe down the road if after three more months on Ibrance it grows
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Ashlyn, doctors drive me crazy when they say no point. My friend had two tumors in each lung and her Memphis doctors also said no point in having surgery. She found a surgeon (Blumenshein, I think) in Dallas who agreed to remove the tumors. It was a difficult recovery but her lung mets have never come back and I know it's been at least ten years, maybe fifteen. I'm not trying to push you to do that, just to let you know it can be an option.
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Thanks Patg...you are a bright light for us all.0
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catching up on all our posts...wow...everyone is very busy. Sounds like mostly good news and some suspended responses pending more info.
My first CT after 3 mos on Ibrance/Faslodex showed no new lesions and no growth of existing lesions...
I am truly still in shock over the whole thing so just kind of numb...many of you can probably relate...
Warmly, V
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JoynerL!!!!!!!! How FANTASTIC is that!! I'm so thrilled to read your news I don't know what to say! And that's from someone who is never stuck for words. I've saved your post to read and read again any time I get down because now I know it can happen to someone I know. And thanks for all the wonderful information. I'll spend time poring over that, it's so very reassuring.
MountainLady...re the red rash. The rash on my feet isn't itchy at all. The rash on my hand is sore but I suspect the rash on my hand is allergy related rather than Ibrance related.
Jaycee have you had your scan yet?
I'm having a CT and bone scan on Tuesday and I must admit I'm a bit nervous about the result this time. I've had bone pain in my two worst tumours, which I haven't had for about a year now, but even if there is some activity I doubt it's very much. Probably not enough to show up in a scan.
Hugs to everyone...
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Thanks, Leapfrog, and we'll be thinking about you on Tuesday.
V, my first scan results after the initial 2-3 mo of I/F (CTs and bone scan) were exactly what yours were: no new lesions and no growth of existing. It took until the second, at around 6+ mo, for actual improvement to show up. You're on the right path!
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Hello. I was stable when I started Ibrance/Femara Jan 2017. I became NEAD 10 months later according to quarterly scans, Oct 2017.
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Gumdoctor, yay on the good scan.
Leapfrog, my PET was in Feb. and it was all good. Good luck on our scans Tuesday.
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Cure-ious or any one else: Can anyone direct me to a peer reviewed article that either posits a theory as to why eating cruciform veggies affect neutrophil levels or better yet one with data that shows that cruciform veggies increase neutrophils?
My neutrophils are chronically low. My oncologist says it because I have had a lot of radiation to my pelvis and femur, which are bony structures that make a lot of neutrophils. Neither she or I can think of a reason why cruciform veggies would impact this. I can see that these veggies would impact folate levels, which in turn should help red blood cells, but not neutrophils.
Hobbes
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Hobbes,
I looked around a but in PubMed. Did not find anything specific to your question. I will keep looking. Seems to be an elusive topic.
Warmly, V
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