Ibrance (Palbociclib)
Comments
-
I always take it with food as I also read the stats that it metabolizes better that way and I drink lots of water when I take it. That can be a little problem depending on the day and if I will be close to a bathroom, since what goes in must come out. :-) . Hence, the question on timing. I am playing around with the timing of the letrozole to see if it changes any of the side effects but I have to set the alarm on my phone so I don't forget it. I don't think that timing is quite as critical and I think all the side effects are less if they are separated. But, that may be just wishful thinking
Faith
0 -
I always take my letrozole and ibrance together with dinner. Sometimes that's 5:30pm.... sometimes that's 6:30pm.... it all depends on our life that day. I was told to take it with my biggest meal and plenty of water. The time of day, I was told, does not really matter. I was also told to never "double-up." So, if I forgot to take ibrance on a Tuesday night I am NOT supposed to take two on Wednesday to make up for it. At first I thought to myself, "How on earth could I forget to take such an important pill??" Well.... I haven't forgotten yet, but I've gotten close
I suppose that's good.... means I'm living my life and trying not to consume myself with this.... (emphasis on *trying*).0 -
Ok, I'm four pages behind so I will respond to each page separately, hoping that doesn't cause too many non sequiters.
Carol/Maltese, I'm looking at your August 28 post and I see from your stats that they did confirm liver mets. I'm sorry that was the case. What smart advice they gave you, to stop meds but not start faslodex yet, so you can be ready and eligible for a clinical trial. I will take that to heart. I have thought that I would want to start faslodex immediately upon a bad scan, but I see the value of taking a moment to strategize. I hope the break gives you good relief from the pain and soreness!
0 -
Eelder, fantastic that your onc had encouraging things to say to you!
I'm still watching my TMs go in and out of normal range, and have had two ambiguous scans in a row. Since my onc says my next treatment will be faslodex, I'm quite interested in the Sandpiper trial (faslodex plus possible taselisib for PIK3CA pathway). Interesting that eelder's onc seems to be saying that luminal A might do well on just anti-estrogen whereas B might need more. My onc said B for me because of Ki67, even though PR is high. And she had first planned aromasin plus afinitor for me, but then Ibrance got approved so I went on letrozole plus Ibrance instead. My point is that Sandpiper would be a chance to do a different anti-estrogen plus something. As far as the tumor genetics that Stephanie and Zarovka mentioned, my Foundation One report showed a variation of unknown significance: PIK3C2B. Close enough, or not?
Z, Deanna, and Carol, yes I think that both Ibrance and estrogen deprivation must affect wound healing and recovery from illness. And for me, the physical therapist agrees with me that the drugs have lowered my body's tolerance and made me more prone to injury.
Aritst, the Ki67 should be on your pathology report if it was checked, but some places do not do this because they consider it unreliable. My first path report (stage 1) did not have it. Boy it sure would be interesting to know. It takes a tumor genetics test (for example, Foundation One) to find out about PIK3 and other mutations. "Mutations in CDH1 and in the PI3K pathway are the most frequent molecular alterations in ILC" according to the abstract of the paper linked below.
0 -
I take mine between 4:30-6:00. Take with dinner cause it's my most consistent meal. I don't think a couple of hours time window matters that much. My onc only stressed to take it with a meal or snack that has more then 400 calories, Guess all onc have different opinions.
0 -
I take mine with dinner as that is my most consistent meal (a la Eelder and Lynwood). Thus far I forgot to take ibrance once during a client dinner when I had my evening bag and not my usual filled-to-the brim purse with meds, etc. Nothing happened, but never double up. Round #9 is ok for me, but I often go straight to bed after dinner. Z- please feel better, I'm concerned about your dental pain. It took several weeks for my cut wrist to heal, and the wound looked like a crater for awhile. Encouraged about new pathway meds - good to have something out-smart our sneaky cancer cells. Still riled that new node is in my good lung. grrr
0 -
Thank you all for your replies. I take mine after breakfast as that is my most consistent meal time but I'm wondering if it would be OK to take it after lunch once or twice a week?
Z, hope your dental appt. goes well today. Sending healing thoughts to everyone.
Faith (in the future
0 -
Thanks everyone for the helpful and kind responses. I'm starting to feel a little better about this.
I am naively hoping that being in chemopause already might make the transition to full menopause with the Lupron shots a little more bearable...I found this fan that saved me from my 4am hot flashes during chemo (it's so quiet and the breeze is lovely https://www.amazon.com/Rowenta-Silence-Oscillating...=sr_1_1?s=home-garden&ie=UTF8&qid=1472841223&sr=1-1&keywords=rowenta+turbo+silence). I'm curious to see how the hot flashes are - my first experiences have been that I have them from my knees down and on the back of my neck lol.
About my treatment plan...we didn't know I was stage 4 when we got started. I was dx in Dec 2015 and the PET was done in Jan, but I had already started chemo. I had a big tumor burden in my breast though - it covered 5:30 to 9:30 and was made up of a couple of larger ones and 20+ tiny ones. I was stage 3A or 3b from the beginning and my UCLA Oncologist wanted to make me more operable. So I did 6 rounds of Taxotare and Cytoxan and had a great response to it. SEs weren't bad at all for me. He would have done chemo first on me whether or not my PET showed anything in order to deal with the primary tumor site, which is why I was OK going forward with it not knowing the status of my PET.
The surgery was my choice. My Onc encouraged it but was also clear to say that there is not a strong evidence base that removing the breast for Stage 4 prolongs survival. I opted not to do a bilateral since there isn't any cancer showing up in my right breast MRI and I thought it would both help identify progression if I kept it and would enhance my QOL since I have to now be so careful with my left arm.
In talking with my Onc, he's "swinging for the fences" and "treating with curative intent." So, he also encouraged radiating my two bone mets in my hip and arm. The one in my hip was causing some aches anyway. That was all very easy.
I *should* have no tumors showing up on my next bone scan, which will be soon, and with the chemo already done I hopefully have a whole lot less in my system. He's being aggressive to hopefully keep it all at bay for many years. He seems to believe in oligometastatic cases and is proceeding as such.
About flip flops - you know, the important stuff - I've switched over to FitFlops and it's like walking on clouds. They are podiatrist approved. They've ruined me for other shoes.
Hoping for good days and weekends for everyone. This is a very nice group and I look forward to getting to know you all more.
Best,
Jen
0 -
Oh Jen.... I need to look into fit flops
(as I hobble around on my hurt foot.... ridiculous)Thank you for sharing your journey with us. This makes sense now - doing the chemo first. More proof that everyone's journey is a little different and no two cases are alike! So, did you present with only those two bone mets? How much did your breast mass shrink? Was the recovery from surgery okay?
I was diagnosed in late March as Stage 2a. My breast mass was only 2 cm. My surgeon (thankfully) wanted to do a PET scan "just to be sure." She had beat breast cancer years early so was perhaps more assertive than other surgeons (the other one I was "interviewing" did not suggest a PET... can you imagine? Oy!). Anyways, within 10 days.... boom! I went from Stage 2a to Stage 4. WHAT A BLOW.
I am SO intrigued that your oncologist seems to believe in oligometastatic cases. When I read about this back in May I clung to this idea. Since I presented with 3 mets, all to my liver (one single organ), I fit the definition but it did seem that not everyone agrees with this idea. My oncologist has said from the start that Stage 4 isn't curable, HOWEVER, since my scan in July she immediately started talking surgery + radiation (two things not discussed prior) and has said other things leading me to believe that she also might be treating me with curable intent. Doctors don't ever want to lie to their patients and no one ever knows from the outset how you'll respond to treatment, so I think she was rather tight-lipped with me until my scan showed significant regression. THEN my journey started to take a different turn. She's never said "curable intent" to me, but she has said other things that could imply she's thinking this.
Now off to look into some fit flops
0 -
Stitches from extraction out. I can stop taking antibiotics. On day 12 after extraction and there is still inflammation and some tenderness, but extraction site finally healing.
Thanks for all your kind thoughts. Starting back up on Ibrance Sunday.
Everyone sounds like they are in the game, not backing down. Way to go. Have a great weekend.
>Z<
0 -
Feel better Z.....
0 -
Sad to report the lovely Hope (Romansma) who started this thread passed last night. Very sad.
0 -
Words can't express...
Thank you, Hope, you gave so much and you lived fully. You lived and loved and you gave of yourself. You will be missed. You are already missed.
0 -
So sorry to hear this. This board is how I found bco, and Hope was the first, wonderful, supportive voice I heard. I had been following the "concerned about Hope" board, so I knew it would be soon.
Prayers and uplifting love to her family and all who loved her.
0 -
So sad to read this. And I am starting to fail on the Ibrance/faslodex combo and don't know what's next. I need to live to see my next grandchild be born which won't happen for a few years yet . Fear is starting to catch up to me please God no more! Send us a cure
0 -
dlb823 I sent you and Jobur a response but it never showed up. Maybe I forgot to click submit? Idk. I've always been a little ditzy but it seems like my heads not thinking very straight these days. Anywho...my pharmacy is BriovaRx. I was the last delivery of the day so my pills were n the hot truck all day.
Jobur thank you for the welcome I'm sorry to "need" to be here too but I am so grateful for a place like this I had no idea that Ibrance was so expensive. I've set myself a reminder on my iPhone to reorder my pills during my off week. I'll be having my first blood work Tuesday. I've been feeling really well so I expect good counts. May everyone else receive good counts!
0 -
I am just coming back to this thread to express my sadness over the loss of Hope, who started this all. 20 months ago when I started Ibrance as part of a clinical trial Hope welcomed me to this thread, even though I wasn't stage 4, as she said we were all out there trying to see what this drug would do. We were all dealing with the side effects and back then this thread was the only place to get good information. Even the Dr.s didn't know much. THANK YOU, HOPE. Rest easy
0 -
((Hope))
0 -
Pooky60 - so glad you are doing well. good blood counts reduce drama and stress. if you fill out your profile with diagnosis and treatment options AND make it public, it will appear in your signature block. This gives us more context to respond. We are all experts, but usually only in our little micro diagnosis. And there are so many in breast cancer.
All - when I wake up in the morning, my feet ache so much it is hard to stand on them for a while. I walk around a bit in pain and eventually it goes away. Sounds like the kind of bone ache that my doctor warned me that letrozol would cause, but I wonder if anyone else experiences this.
>Z<
0 -
I was also so sad to read of Hope's death. Like probably many of you here, this was the first forum I found after doing a Google search for Ibrance. I will always remember her.
For Carol-love if you're still reading this thread, and for all of us, this is something I read today. "Courage does not always Roar, sometimes it's the quiet voice at the end of the day telling us we can try again tomorrow".
<Z> my feet hurt a lot in the morning when I first get up or even after sitting for long periods. I especially have heal pain but I think it's being caused by plantar faciitis.(sp?). I have wondered if the meds are making things worse. I find that if I try to do some leg and foot stretches before getting up, it helps a bit. I'll be interested to hear if others have similar problems.
Faith (in the future
0 -
Z and Faith,
Absolutely yes to the foot pain when I first get out of bed. It usually only lasts a few minutes though; by the time I hobble to the kitchen, it is almost gone. Sorry that it has happening to you, but reassured that it must be a side effect and not something else going on...
Wishing a great holiday to everyone on the thread!
Angela
0 -
Hi Faith,
I too have suffered foot problems and know they can make us miserable.
Here's a helpful topic from another bco forum, plenty of good ideas and possible solutions follow the original post at:
https://community.breastcancer.org/forum/79/topics...
Warm healing light for all, Stephanie
0 -
Stephanie, thank you for that link on some helpful suggestions for the foot pain. I did see the original thread, but I'm afraid I just get lazy about the right exercise and stretching sometimes. I noted the Voltaren gel and was hoping that might be an easy solution but Google tells me it's another nsaid which is not good for me since it can cause water retention and raise BP. I just need to get more proactive about all of it.
Thank you again for the link and for being such an inspiration to all of us here with your many words of wisdom from years of experience. May you also feel warm healing light.
Hugs, Faith (in the future
0 -
Hi Faith,
One thing I tried that didn't work for me is topical capsaicin, based on hot peppers. It's available OTC for a decent price at many pharmacies. Don't put your fingers in your eyes after applying it!
warmest wishes, Stephanie
See too http://articles.mercola.com/sites/articles/archive...
0 -
Hi Stephanie, Thanks for that idea, I will look for the capsaicin. Maybe it will work for me.
Hugs, Faith
0 -
Sore feet when you wake up - sounds like plantar fasciitis to me! This has been my biggest issue for the past 6 weeks. Suggestions:
1. Get GOOD inserts for your shoes and wear those shoes all the time. Quality running/tennis shoes are best. Barefoot is a no-no. Flips flops usually are too, but depending on the support those flops have, you might be okay.
2. Go to any good running store to buy inserts AND buy a toeless sock specifically made for plantar issues. Wear this ALL THE TIME.... with shoes, with flops, to bed, in the pool (yes, I'm serious).... the minute I started wearing this particular sock my foot felt so much better. It improves circulation to the area of the foot.
3. STRETCH! And ice! You can freeze a water bottle and then roll your foot over it.
4. If after a month you still aren't getting relief, consider buying a sock-boot from a running store. This keeps your foot in the flexed position all night long so you prevent the "tearing" feeling in the morning. We naturally sleep with pointed toes and then we step on the floor and the plantar connection tears - that's the pain we feel. By keeping your foot warm and flexed you prevent this tearing and allow it more time to heal.
Plantar fasciitis is COMMON. It's totally treatable, but can become a huge problem if you don't take care of yourself. I literally couldn't walk for weeks and that affected me so much - emotionally, physically, etc. All because of this nuisance.
0 -
Coffee. When I was diagnosed I quit drinking it because it's acidic and I was trying (still am) to eat as alkaline a diet as possible. I'm missing it, of course, and am wondering what you've all been told about drinking coffee. Bad? No problem? I've been told it's "fine." Drinking in moderation is fine. I always liked it black so there's no concern about sugar and cream. I'm mainly worried about the acidic aspect of it. Thoughts?
0 -
eelder, I don't think there's anything wrong with coffee, although the acid in it doesn't agree with Ibrance (for me) if I drink it around the same time I have my Ibrance. I was reading a list a few days ago of commonalities amongst Blue Zone (longest lived peoples) populations, and surprisingly, coffee is a part of many of those diets. In excess, the caffeine in regular coffee probably isn't that good for anyone, but I don't see how a cup of it can be harmful, and there's absolutely no evidence it's an issue with Ibrance. Matcha green tea has become my a.m. beverage of choice in recent years, but I frequently will have one cup of coffee in the afternoon -- caffeinated or decaf, depending on whether or not I feel like I need a caffeine boost. In fact, going back to an occasional caffeinated coffee has helped me with Ibrance fatigue.
0 -
Thank you dlb823.... that was my thinking. I think initially I removed it out of fear and out of a need to "take action." Now that I'm trying to settle back into normalcy (new normalcy), I wouldn't mind having a cup of black coffee to start my day again. It was ritualistic for me and was part of my day. It would be nice to feel a little normal again. THANK YOU.
0 -
eelder, thanks for teaching me!
Never heard of toeless socks, but will try them for these nagging foot cramps.
Both conditions are complicated by feet being in odd positions.
Thank you so much!
Love and light for all, Stephanie
0
