Ibrance (Palbociclib)
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Cure-ious, that is great info about FGFR 1 and FGFR 2. I’m going this summer so I’ll post what is recommended. I didn’t realize Z had FGFR 1. She seemed like one of the people that was going to figure this cancer thing out.
I’m going to inquire about CDK 7 and CDK 12.
Ann thanks for the info on the trial at Vanderbilt. Do you have FGFR 1
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Does anyone know disease free interval on Ibrance with FGFR 1
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Can someone tell me again the common mutations that are found when Ibrance fails? Or do we really know for sure what they are? Can they be found in liquid biopsy?
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Scaniety today...find out results on Tues.....so far 3 yrs in I/L0
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Airlinegal…...I'll be thinking and praying for you this morning. I also, have a nuclear bone scan, and CT this am at 9a.m. CST. I'm praying that your current treatment continues working for you. Not sure when I'll receive my results, but probably next Wed. at regular appt. God Bless, Sue
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Sorry for a very basic question, but how do we know if we have FGFR amplification?
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we are all with you in your pocket today airlinegal!!! Hope the scans go smoothly and good news results come quickly.
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Airlinegal, right there with you, as usual. My Pet is next Tues. Results at next MO appointment three weeks later unless I call and make a nuisance of myself. Hope all goes well. We'll compare notes after. There are all new people at the Pet scan trailer so we'll see how they feel about using my port this time. I will have it accessed as usual. Always a surprise.
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Snooky, Airlinegal & Jaycee--I will be praying for your scans and peace for the results. I totally get it! Mine is the 16th and I am in increased pain right now so I have heightened scanxiety too. They won't scan me early (unless there is a cancellation or I suddenly have additional issues) so I have to push through for 2 more weeks. If I have progression I will push for new labs to discover the mutation. What a life!
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Scanxiety Ladies.... thinking of you al. Me too later this month.
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Cure-ious, thanks for that excerpt.
Novagirl, I do have FGFR1 amplification based on Foundation One results. Also I believe the other mutation that is acquired to overcome CDK4/6 is ESR1.
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I'll be praying for all of you as you have scans and await results.
Love from PatGMc
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Jaycee hope all is going better now. TY for info on your experience with flying and lymphedema will check with my MO when I see her this month..She is such a great listener..Wish you could have that all the time.And you should see my two/three page reports I receive on the hospital portal written by her..I keep them. I have journals also..One of my granddaughters is taking care of these after my death.I am also a member..of Harvard Medical Center Nurses Health Study 1..All my records will be sent to them when I die..Hope it helps generations to come. As what you are researching will also. As you can see it is continuing.
Nurses' Health Study 2 began in 1989 to examine diet and lifestyle risk factors and successfully recruited more than 116,680 nurses, of which 90 percent are still participating, and the Nurses' Health Study 3 began in 2010 with a goal of recruiting 100,000 new female nurses and nursing students.
WE are pioneers each in our own ways..
Break in the weather this weekend.Time for me to hop in my boat and fish..
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Hey all. I have worked all day -12 hour shift- so my thoughts are muddy right now. Ready for bed but wanted to check in.
bloomingdalechik- I see you are on Lupron so you are premenopausal. So am I. I am on Ibrance and Letrozole with the Lupron as first line treatment. My MO commented the next step would be Faslodex instead of Letrozole when I develop progression. I don't really know if Letrozole or Faslodex first is better. Sorry, I guess I am not much help. But glad you found us. You will learn a lot here. Hopefully someone can chime in and answer your question better. Please continue to post.
Sandibeach---My question too. I have not had progression yet, but my MO commented the next step would be Faslodex. We did not discuss if we would do further testing at the time of progression to look for mutations. In my mind, we would want to see what mutations are there and treat based on that. But all this is confusing to me. I wish I could "get it" better.
airlinegal, snooky, jaycee, and intolight--- Praying for all your upcoming scans. Everyone is coming due at once !!!! Mine was in April and next in July. Hoping for GREAT scans and more Ibrance Dancing !!!!!
Going to bed. Will check in tomorrow night. Have a good night all.
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Ann273- Do you have both FGFR1 amplification and PI3KCA mutation? Also, it seems you got a good response to AA, is that right?
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Thinking of all of you with scans coming up. Mine are later this month so I understand your anxiety.
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Sending prayers for all of the May scanners.... seems it is a popular month. Keep us posted.
I am a bit lost on all of these mutations but I am going to stick my head in the mud until I need to know. So far o haven't had any Foundation One or other testing.
Bloomingdale - tough question since you haven't been on an AI yet. The good news is you have both options in your toolkit. I would go with the one with better study results (Faslodex, per your email but there are likely studies that point to the AIs) but others may know of one is better before the other. Good luck as you make this decision.
As for me, I'm still working to solve my monthly infection. I saw my ENT and he suggested a culture to see if we can identify the best antibiotic to potentially wipe it out for good, rather the all purpose one that seems to only knock it out until my white counts get low again the following month. He also gave me some guidance on things to do to try to control the bacteria in my throat around the time that I get the infection, since that's where it always starts. Then I saw MO #2 and his guidance was to continue on the path with the ENT/culture/potentially targeted antibiotic and stay on the current dose rather than throw a new variable in there while we try to solve this. We will reevaluate at my next apt in 3 months.
Love to all,
Lauren
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Cure-ious I do have both P1K3CA and FGFR1 and I had both before even starting afinitor/aromasin. And yep, I got a little more than 3 years on A/A.
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Good to know, every robust response is important information for someone with similar cancer oncogene expression
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For me, I like the insistence that Ibrance be taken the same time every day with food. Morning works best for me. So that means eating breakfast. It's not something I ever did with consistency. I could go till noon sometimes without eating. That also meant I took my meds sometimes different hours of the morning, depending on when I made it upstairs to shower. With the Ibrance, my phone alarm goes off at 8 am. to take the meds.Most mornings I've finished with breakfast by that time. Really, they say breakfast is such an important meal anyway. (A recent study said people who eat breakfast every day live longer. I'll try to find the link). So, of course, I'm hoping this adherence to a same time every day routine helps out with the effectiveness of the Ibrance and Aromasin. Of course, its a bargaining thing, telling myself if I'm faithful to the time schedule, the meds will be faithful to me.
Btw, I got the go ahead to continue with the 100mg of Ibrance for the rest of the cycle which is two more weeks. My white blood cells didn't plummet so far as to knock me off the med. I give credit to the multivitamin I started taking. Not sure if onc will ask for more bloodwork after this cycle. Have an appointment in the middle of May so will ask then.
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Divine, I see my MO on the week off of Ibrance, as close to start day of next cycle as possible. She does blood work every time. I am not allowed to start the next cycle unless the ANC is 1.0 or above.
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The ANC is an abbreviation for what? Please.
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Absolute neutrophil count. On my blood work reports, it looks like this: Neutrophils # Bld Auto and they give 1.56-6.13 as the within normal range.
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Jaycee and others- I have been on Ibrance for 17 cycles total now. With some "tweaking" of the dosage and schedule at first, and a change in MO (he moved), I am on 75mg. My current MO always wants to see me on my week off also and we do blood counts and discuss the results and get the go-ahead to start the next cycle. But this last time she said she would see me in 6 weeks vs 1 month. At first she said to do the blood work at the visit in 6 weeks, but I reminded her that we check it on the week off to see the ANC count. She then said to do the blood work in 1 month with the office visit in 6 weeks. Most people would be overjoyed in not seeing the doc monthly, but I am hesitant. As I am sure you all have noticed, I guess I am an anxious person and I would rather see the doc monthly. Just to check in, touch base, if nothing is really bothering me that month. I guess I think the standard of care is monthly labs and office visit and we do have a serious illness. I live in the same small town as the clinic so it is not a situation of traveling to a large cancer center. I drive by the office building every day in my regular travels. I don't know, maybe I am being too picky about my care.
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Hi Candy. I have blood work during my off week every month, but I only see my onc every 3 months. If there is something we need to discuss she quickly responds to my calls or emails. I too live close so distance is not the issue. I am almost to year 3 and we have done this for all 3 years--even in the beginning except for the first month. This works for me and I don't feel like I receive less care as there is nothing I feel I needed to discuss with her extra and she gives me plenty of time during our appt. I will add that I still tolerate 125 mg Ibrance and have only delayed once during a pneumonia episode. I do fear I may have slight progression now so this may change. I will let you know. I don't know if this is less than the standard, but maybe I am not as anxious or have fewer issues. We are all different and you need to do what is comfortable for you.
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Candy, you're right. I'd like to see all doctors less. But, in your case, 6 weeks doesn't makes any sense. If she wants to go longer (which you don't but that's another issue), then she should go 8 weeks. At 6 weeks, there is nothing new to discuss. Just get new blood work and discuss that. If anything looks amiss in the 4 week counts, they will call you. I suspect she is going on vacation. If you are really uncomfortable, TELL HER. I don't get this walking out of a doctor's office unhappy and not making your feelings known. Yeah, I do it all the time and I don't get that either. Also remember that many medical issues are now driven by what insurance will pay. If your insurance is balking, your doctor might have to jump through extra hoops to get monthly visits. Some doctors are not good at or willing to jump. Not their fault usually.
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I also went to the MO every 3 months, blood work at the end of the off week and restart or hold off if the ANC was .9 or above. Email or phone appt was available if needed - less intervention helped me live my non cancer life more easily ( denial is sweet)
Reading Lori Gottkieb’s new book. Will share a quote I related to - she was not talking about cancer- but, it certainly pertains to how I feel about the cancer.
“When the present falls apart, so does the future we had associated with it. And having the future taken away is the mother of all plot twists. but if we spend the present trying to fix the past or control the future, we remain stuck in place in perpetual regret”
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One of my favorite quotes is "don't loose tomorrow for looking back at yesterday" and that could also mean live for today. Into-light I will be thinking about you.0
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Nkb, I just finished Lori Gottlieb’s book, Maybe You Should Talk To Someone” this afternoon! I loved it!
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Hmmmn. Re cycle and MO / bloods/ nurse clinic visits. For me:
MO kind of 3 monthly...
Nurse / bloodsmeant to be every 4 weeks, but we’ve just decided it’ll now be every 5 ( 3 weeks on and 2 weeks to recover) as Neutrophils too low or fluctuate at 4 weeks.... nurse not too happy as that puts me on a different schedule....trust me to be awkward!
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