Ibrance (Palbociclib)
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My treatment remains the same: ibrance, letrozole, and lupron injections every 4 months. Hopefully this remains my protocol for some time. Only the future will tell. I was off of ibrance for one week for surgery.
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eelder, great to hear you are doing so very well! I've undergone a similar treatment plan with the exception of the Diep flap recon which I'm holding on for now. Your story inspires me. Hope you'll keep in touch on an interval that works for you.
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I just got a letter in the mail that Ibrance has been reclassed to a tier 3 drug and will be much more expensive for me. They didn't say how much though. My copay had been $150 a month and the Pfizer copay assistance program covered all but $10 of that. Anyone else experiencing this
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Thank you everyone for your feedback. Z and animal crackers you make very good points.
Letmywifelive- i am sorry but since the cancer is in my lungs I don't have much knowledge about your wife's new lesions in the liver. My thoughts are with you as you learn the next steps in your tx plan.
Eelder- glad to hear you are doing well!!
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Good luck with your treatment at UCSF. My wife goes there too for second opinion (Dr. Munster) and recently she was diagnosed to have mets to liver (previously in bone). Have you been on Ibrance treatment so far ?
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I have been on ibrance, letrozole, and lupron injections since April 30th 2016. I remain on this protocol to this day. Hopefully this lasts me for many years.... crossing fingers.
Jen, I haven't received anything like this for ibrance though I will definitely be asking about this. How frustrating. Sigh.
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Also, my pathology from surgery came back yesterday: both nodes removed/biopsied showed no cancer cells. The two tumors that presented at diagnosis were shrunk by over 50%, and the DCIS I had was almost gone. I can assume that if I chose to have surgery a few months later that perhaps ALL of the DCIS would be gone and the tumors would be even smaller/gone. My surgeon said my pathology was "very good news" and so did my oncologist. Hard to really make sense of any of this really! The surgeon felt the ibrance really worked well for me. Hopeful news I feel for those just starting on the ibrance journey! Keep the faith! I meet with my radiation doctor on 1/24 at which point I will hear if she recommends radiation (and I fully expect she will recommend it).
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Hi LMWL-
I have followed Dr. Munster/UCSF in the media, she is involved in several clinical trials that I think will be important, so I have her on a short-list for second opinons when I progress. What has she recommended for your wife thus far? I think she is an excellent choice, at least she is really well-connected with some of the more promising up-and-coming new targeted therapies..
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Hi Cure-ions,
We have an appointment with Dr Munster next Thursday and with our primary onc at Stanford tomorrow. I have high respects for her and if you were not aware already, she herself is a breast cancer survivor. She is also a straight shooter but with sensitivity and common sense
I will definitely let everyone know what she says.
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Eelder, great news on the pathology report and your surgery. Keep it up and let's pray we all have a good long run on Ibrance. LMWL, so sorry about your wife's news but don't give up hope, as many have said there are lots of treatment options out there. You seem to be on top of things and I'm sure you will find the next right treatment plan.
Jen, I have no info on regular insurance for Ibrance since I'm on Medicare using Part D but I'm here sitting on pins and needles waiting to see what will happen with my next refill in two weeks. Last year when I started on Ibrance in January, I was given a charitable grant to pay for it which was a true blessing. That grant has expired and the last time I checked the funds were not there for another one but I'm told there may be other grants out there. I sure hope so, because without the grant my 1st copay is over $3000.00 and then it drops down to about $530.00 per month. This drug could easily bankrupt a lot of people! I'm holding onto the hope that God will provide.
I just decided to add turmeric to my list of supplements to see if it helps with joint and muscle pain. For those of you out there using it, what time of day do you take it? It seems it should be on an empty stomach and I think I also need to figure out when to take that along with my PPI, omeprazole for acid reflux. Thanks for any ideas you may have.
Faith (in the future)
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Faith, I use turmeric in my morning green smoothies. I don't have the smoothies every single morning anymore - probably 4-5 days a week. I usually put 1-2 tsp in the smoothies with a pinch of black pepper. I don't taste it at all! I asked my onc about curcumin tablets and she advised against them - one, they are processed and two, we aren't sure the potency of them is safe for all. Though many use curcumin and are perfectly fine. I choose to use organic turmeric that I buy at Whole Foods. I have almost zero joint ache/pain. I attribute it to the turmeric as does my oncologist.
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Faith - I do 2000 mg per day (1000mg in the morning and 1000mg in the evening) of longvida liposomally encapsulated curcumin. When I stopped taking curcumin over the holidays, along with all my supplements, my muscle and joint pain went through the roof. I am back on all supplements and the muscle pain has mostly gone away.
I take a lot of supplements, but I believe the curcumin is what is helping the muscle pain. Note that I take high doses of a highly bioavailable form of curcumin. Curcumin is generally very poorly absorbed. In india it is cooked with ghee which means it is ingested with fats. This is what liposomal encapsulation accomplishes. I've heard that curcumin can interfere with letrozol, but none of the oncology specialists I see feel that is true.
eelder - do you know Dr. Munster? Who do you see at UCSF?
>Z<
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I do not know Dr. Munster nor have I heard of Dr. Munster. My onc is Dr. Marshall out of Epic Care in Emeryville. She attends tunmor board weekly at UCSF and is connected with many of the docs there. My second opinion doc who I see every 3-4 months is Dr. Mark Pegram out of Stanford. Both Dr. Marshall and Dr. Pegram are absolutely outstanding. Excellent bedside manner, highly intelligent, very knowledgeable.... I could go on.
Yes, curcumin/turmeric needs to be taken with fat. I put avocado and coconut oil in my smoothies to increase absorption potential. But I don't do the morning smoothies as religiously as I once did. Even with the decreased number of days I take turmeric, I'm still not suffering with joint pain. However, if I go too long without it, it comes back!
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In the good news department, my latest scan shows no progression and continued shrinkage and/or stability of any existing spots! Tumor markers continue to go down. I'm on my 11th cycle of Ibrance, coupled with Letrozole.
I'd better enjoy it now, because an extension of my COBRA insurance has been denied, so as of May 1, I won't have insurance that allows treatment at MD Anderson. My Medicare won't kick in until the end of August.
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Interesting news about Ibrance moving to tier 3 from tier 5. Of course I JUST signed up so now will need to reinvestigate to see what my co-pay will be. Since I have COBRA this month Pfizer's co pay program works for this year, but then next year, when it's all Medicare, the out of pockets will be high. May have to find a new Part D PDP. I did find one of those Good RX coupons and it looks like at Walgreens brings it down between $4k - $5K per month. (What a bargain eh?)
The financial piece of this is as deadly as MBC.
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Hi all,
I'm sorry if this has previously been discussed. I've been on letrozole for the past six months. I had a scan today that showed shrinking tumors, so the letrozole alone is working well for me right now. My oncologist threw out the idea of adding Ibrance with the hopes of further regression. I was previously on a ribociclib trial and had a great response until i had to go off due to elevated liver enzymes that may or may not be due to the medicine, so he feels i'd have a good shot at Ibrance also working.
Any thoughts? I'm really torn. I love the idea of doing all I can when I can to shrink the tumors as much as possible. That said, the letrozole is working right now, so why mess with a good thing? I also worry about the return of the liver inflammation, which MO states is a possibility. And selfishly, I have a quality of life right now that I love, and who knows what side effects i could have with Ibrance.
Jamie
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Jamie,
My point of view is that there is only a finite list of treatments available. Don't exhaust it unless there is a reason to do so.
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Katty,
As long as your disease is under control that's the only bit of help you need from God. The rest of life's problems, like financial, though can be incredibly hard to manage at times, can be managed with a lot of hardship.
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Had a big day yesterday.....Saw my MO to get PET scan results after 3 cycles of Ibrance 125 mg & Femara. "significant reduction in cellular activity and no new hot spots". Hurray! Hurray! Hurray!!! The MO is usually very guarded in his word choice and he said - this is GREAT news!! So, of course, we are over the moon. We talked about several subjects that this board has brought up and he responses were interesting. Big, big yes to exercise to combat fatigue. No to TM counts - said that there are rarely therapy decisions made from those tests. And, finally, no to reducing the Ibrance dose.
He said that the progression of my disease is simply weird - 23 years of no activity and now no discreet metastatic tumor, just hot nodes and spots. Since this dose is working so well and I am tolerating it fairly well, he doesn't want to mess with what is working. My husband summed up the visit by saying that I am a weird outlier who is not as "hot" as she once was.
The elation was short-lived, though. I spend over 1½ hours on the phone with CVS/Caremark who changed specialty pharmacies and messed up my script. Geez. They are so apologetic that they are having my meds driven to my sister's in Baltimore tomorrow evening in order to keep me on cycle. That's something.
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Jamie - Keeping Ibrance in your pocket for the moment is a very reasonable decisions. If you use it now, it won't be there later. It is a very effective second line treatment with faslodex/fulvestrant.
QOL is important for outcomes because exercise, low stress etc are so important.
Staying on letrozol is quite reasonable, IMO. I've considered dropping Ibrance and just staying on letrozol. Unfortunately, I am PR- which may make me less responsive to hormonals. For the moment I am not taking the risk.
>Z<
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I have a different kind of request to the ladies on this forum. If anyone lives near SF Bay Area, can you please recommend an oncologist you trust, caring and thinks out of the box ? I would like to consult with him / her.
Not looking for someone in Stanford (I am losing confidence with the onc there and not sure if I can ask for a different onc at the same place) or UCSF (we already go there for second opinion).
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LMWL.... try Epic Care in Emeryville. I have been pleased with the center. They are very up-to-date and have oncologists, surgeons, and other professionals within the same center. This is a new group formed a few years back with very experienced, well-known Bay Area breast cancer specialists. So, while the center is new, the professionals associated with it are not new to BC in the least! Plus, they are affiliated with UCSF in that they are in very close contact with them with regards to the "latest and greatest" and most attend tumor boards at UCSF. I have a second opinion at Stanford (Dr. Pegram) who has agreed with every suggestions my oncologist at Epic Care has suggested thus far. The radiation decision I am waiting for (2 weeks out) may elicit some differing opinions, but so far, everyone has been in agreement with my plan and protocol.
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Ok, so reading about keeping ibrance off the table at first makes me nervous because I am of course doing it along with letrozole and the clinical trial. I worry that what if it doesn't work. What will I have to go to next?
I hope I didn't make a mistake by doing this?!?
The clinical trial Dr did say that I don't really have measurable disease. I assume this is a good thing. I think I have 1 that is and it is my t9 he said it was 1.2cm. Is this a good thing
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Saw my eye dr for new rx. She said my eyes are really dry. Probably the arimidex. She recommended a warm compress and gel tears (OTC) at night. Said would help my eyelashes.
We shall see. I can't find a mascara I like since starting this combo. That was the only makeup I wore regularly.
Good luck everyone.
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Apg - Letrozol & ibrance is the go to first line treatment if you are ERPR+ HER2- and you don't have extensive tumors, according to the NCI guidelines. You certainly are not making a mistake following the NCI recommendations and the trial you are in makes it even more attractive.
I am only pointing out to those who don't have access to Ibrance now, that Ibrance makes a great second line treatment and hopefully it will be available when they need it.
When they told me that my second line treatment, if I had needed it, would be faslodex alone I did ponder whether, in hindsight, it would have made sense to hold ibrance for a second line treatment. It's just another reasonable path. Not a right or wrong answer.
Finally, they will be trying to figure out now whether abemaclib or ribociclib will work after ibrance has failed and maybe they do. Maybe my second line treatment will be faslodex and ribociclib.
Not having measurable disease is awesome. If all you have is bone mets and they are very limited, you might even be oligometastatic. And that is a really good thing.
>Z<
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It's been a really rough couple of weeks, trying to get all the insurance ducks to line up so I could get back to my oncologist, go over my December PET (not so good), and get my peppered bones back on treatment. After much weeping and gnashing of teeth, as they say, it looks like maybe we are back on track. Ibrance with exemestane. Cheers and Happy New Year... LOL.
I asked her if I could start on Monday (first of the week, nice and tidy for keeping track, right?) and she said "NO, you've had your little break, get started TOMORROW." Said she's anxious about avoiding compression fractures and "we have got to turn this tide quickly." Aye aye, captain.
I was thinking I would take it at night with supper, because that worked better for me when I was on anti-hormonals before. It worked better to sleep through the wave of fatigue when the stuff hit my system.
However, my onc said, "Take it with breakfast, first thing." But then she's totally a morning person, up at 4AM to play tennis. I can't even imagine living like that. I hardly ever eat much breakfast, anyway.
What dosing time works best for you all?
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lulubee - the limited pharmacological studies availalble show that taking ibrance with food gives you a more consistent dose. I tend to have a late lunch and that is when I take it. I have read that cancer is more active at night, ibrance peaks in the blood plasma 8-12 hours after you take it. So I figure that I want the peak concentration in my system at night. I probably read too much, but that is my plan.
Whatever you do, the thing to keep in mind is that it takes ibrance a while to get into the blood stream.
You are the first person I have heard of taking ibrance with exemestane. Maybe this is the "killer" combination. I am very interested in how it goes because exemstane is on the list of treatment options down the line, but i am not well disposed to afinitor, the drug it is usually paired with.
>Z<
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Z and elder thanks for the advice on the turmeric. The woman at my health food store recommended a brand from Terry Natually called CuraMed that has superior absorption curcumin. It's sold on Amazon but I'm a bit of a computer nerd and can't figure out how to post a link to it. Anyway it has turmeric essential oils in it so it absorbs better. You are supposed to only need one a day which I'm going to take before dinner and see how it goes.
lulubee, I take my Ibrance after breakfast because that's my most consistent meal time wise. I also like to eat a big breakfast and you really need to eat 500-600 calories and include protein in the meal you are taking it with. I don't think you have to worry about a wave a fatigue hitting you right after you take it. It takes a while to get in your system and the fatigue is something that seems to happen more as you move through the 21 day cycle. All that being said, lots of ladies here take it with dinner. Whatever works best for you to take it on a regular basis.
Spent part of the day trying to find grant money to pay these high copays of Ibrance for Medicare Part D people. No luck yet! Spent another chunk of time getting Amazon gift cards refunded after they canceled my order of a new IPad I had ordered with those gift cards. Hope tomorrow is a better day. I really hate to complain about money things when things are actually good with my cancer right now. But we all know stress is not good for us and today was stressful.
Hugs to all and have a goodnight's sleep.
Faith (in the future)
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Faith - Good idea to come on and talk about your day. As we figure out our strategy for beating this beast, money is a piece of it. You are in there dealing with it ... way to go. I am sure you have seen this from the pfizer website, but here it is just in case ...
On Medicare or Government Insured?
Pfizer RxPathways® can provide insurance counseling and help locate independent foundation financial support. Our program can facilitate a comprehensive search for available funding through independent co-pay foundations.*
For more information, visit PfizerRxPathways.com or call 1-877-744-5675.
I was just reading about the direct link between stress and inflammation and thinking about how the diagnostics (tumor markers and scanning) stress me (and everyone) out. It's like the diagnostic process itself is going to kill us.
Hoping we can all use these threads to reduce our stress about life or scans or anything in 2017. You've all been a tremendous help to me on that front over the last year. Thank you.
I unwound a bit today from something that had me stressed ... feeling a deep sleep coming on. yay. Wish the same to you all.
>Z<
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My wife always took Ibrance with food. The one time she had it on empty stomach, she got badly nauseated.
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