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Faslodex + Pablociclib(Ibrance) treatment combination -

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Comments

  • JoynerL
    JoynerL Member Posts: 1,392
    edited March 2017

    Good morning, all! Lalady, I'm so very sorry about your kitty...so hard after so many years. He was lucky to have you.

    Pfizer assigned an RN to follow me for, I think she said, my first 100 days on Ibrance. She has called me twice, most recently two days ago to check on me. Among other things, she has told me these things:

    Avoid eating Seville oranges, pomegranates, star fruit or grapefruit

    She also said the following:

    Alert CVS Specialty Pharmacy to any medicines ordered: prescription, over the counter or herbal. Ibrance doesn't work well with a lot of other medications.

    Don't take any cracked or damaged capsules: call and report for replacement.

    Store at room temperature

    Wash hands before and after handling

    Take at the same time each day

    Works BEST when taken with food

  • JoynerL
    JoynerL Member Posts: 1,392
    edited March 2017

    Someone was kind enough several days ago to tell me that I had my diagnoses/treatments set up incorrectly. It appears that my breast cancer metastasized to the bone in 1990 when I was first diagnosed, which is not the case at all. This is a very recent metastasis. I cannot figure out how to delete that reference to the metastasis in the first round of BC. Also, it looks as though I have had chemo along with my current/just started hormonal treatments with Faslodex and the Ibrance. The CMF was in 1991. Help!

    image




  • zarovka
    zarovka Member Posts: 2,959
    edited March 2017

    Kimberly - the issue is furanocoumarin. It's found quite a few plants including grapefruit and pomegranates. This is one of those interactions that I ignore because furanocoumarins INCREASE the effective dose of medications by slowing down how fast the body metabolizes the drug. The risk is that you will get more severe side effects, but it would take ALOT of grapefruit or pomegranates to do that. In general, increasing the dose of ibrance will, if anything, increase it's efficacy. So you don't feel bad after eating these fruits, it's not a big deal.

    The Grapefruit Pomegranate Fast is not a great idea on this protocol, but otherwise this is good nutritious food that you should be eating, like everything else, in moderation.

    This interaction is not specific to Ibrance. CYP3A4 is one of the enzymes that breaks down many drugs, including Ibrance. Grapefruits and pomegranates and anything with furanocoumarins can interfere with that enzyme. Oddly interfering with CYP3A4 can also block the absorption of drugs in the intestines leading to a lower effective dose. The real risk is that your effective will become erratic if you eat a lot of this class of fruit.

    If you want to roll up your sleeves and dig into this, this article is fascinating. The grapefruit interaction is common to so many drugs. With some drugs you can have a glass of grapefruit and cause very serious toxicity. This has not been the case with Ibrance which is why the fine print in the Pfizer handout is not widely discussed. I have the occasional grapefruit or pomagranate and I haven't noticed any difference.

    The overall message is to keep your eye on the ball. Focus on eating a healthy diverse diet and getting exercise and don't get too caught up in these specific dramas. Most do not matter.

    >Z<

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited March 2017
    Hi Kimberly,

    My specialty pharmacy providing the Ibrance also says stay away from both grapefruit and pomegranate.

    I'm on Ibrance & Faslodex too. I originally started out on Ibrance and Letrozole in Oct 2016. TMs started going up in Feb 2017. My oncologist had me take the Guardant360 blood test, which showed I should respond to both Ibrance and Faslodex, but not Letrozole. So, after Onc had taken me off Ibrance before he got the blood test back, now I'm on Ibrance/Faslodex combination. Will have my second loading dose tomorrow. It will be interesting to see how I do on this and if the Guardant360 is a good indicator of meds I should respond to.

    All- I'm reading this thread daily but not posting much. It's hard to keep up although I'm learning a lot from y'all! Love that everyone shares their experiences and supports one another.

    Hugs to all!
  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited March 2017

    Southern, if you can provide any more info about the Guardant360 I am very interested. What does the report include? Cost?

    Ah, I see their web site is pretty good. But I don't see any price listed.

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited March 2017
    Shetland,

    Well, those are very good questions but unfortunately I don't have the answers right now.

    I'm not planning of paying anything for Guardant360. I may be naive but I've met my plan's "in-network" out-of-pocket for the year already and, although the Guardant360 will be "out-of-network," they say they will work with the insurance company for payment. I will fight for BCBS to process this claim "in-network" as there is not another provider that I could have used for that test. I still don't see the claim online yet, but will keep you posted. At this point, I have been through many of my hormonal and chemo options, so when my oncologist recommended this blood test, I said yes without thinking about the cost. After my appointment, i realized it would have been much smarter to at least ask!

    Re: the actual report, I forgot to get a copy after I discussed this with my oncologist. It was a very stressful meeting for me given I was very anxious for blood test and CT scan results and deciding on my next treatment. We discussed the results of the report, which he had already thoroughly reviewed, so we spent most of our time talking about my various treatment options. I plan to get a copy of my report on my next office visit at the end of the month and then I can give you a more detailed view of the report. My foggy memory is that the report listed the various cancer mutations the test looked for, how your blood tested against each mutation, and then listed the various hormonal/chemo drugs that you should respond to if you tested positive for that mutation. I remember feeling overwhelmed in the meeting as we were making a significant decision on my next treatment, so I listened more to what my oncologist said than reviewing the report in detail. I have been seeing my oncologist for almost 10 years now and we have been through a whole lot together. I trust his judgement (possibly too much at times) vs. being more skeptical and detailed.

    Sorry - that was a long-winded response when I didn't even provide any answers to your questions!
  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited March 2017

    Please don't worry, Southern, I completely get that you needed to focus on the plan with your onc. It's great he got this report to help with decision-making.

    You know, I will be surprised if you are asked to pay anything. These companies don't tend to sock it to patients, and the oncs know how the game is played. I was worried about paying for my Foundation One test, but the good fairies took care of it.

  • lalady1
    lalady1 Member Posts: 530
    edited March 2017

    Hi SP - glad you are doing well and hope dancing well too. Southern I am very interested in Guardant360 - headed to their website and will ask my onc about it. Z - did you see that Deanna (dlb) is now on Xeloda. Yikes She had 19 rounds of Ibrance, but now dealing with liver mets... She is so savvy. Ladies we must be vigilant, eye on the ball as Z says. Joyner - looks like your profile was corrected. :)

  • dlb823
    dlb823 Member Posts: 2,701
    edited March 2017

    Claire, I was just stopping by -- wondering whether or not to keep this thread marked as a fave -- saw your post, and thought I would add something that may reassure others. You know, early in my Ibrance experience I had noticed some in the FB CDK4/6 Inhibitor group turning up with liver mets, which concerned me at the time. So I actually asked my UCLA onc (who is head of breast oncology there and had several years of Ibrance trials experience) if there was any possibility patients on Ibrance were more inclined to develop liver mets. Her thoughtful answer was that she didn't believe that was happening -- that patients progress where they are going to progress, and that Ibrance was not contributing to the liver mets dx's I had observed.

    Anyway... just wanted to share that with you all, in case anyone else has had similar thoughts. And I've been AWOL more than usual from BCO -- both stunned by my new reality, and until today when I popped my first Xeloda, driving myself a bit crazy researching my tx options. Hopefully, things will settle down again now, but I wanted to share the above info, in case anyone else has had similar observations or concerns about Ibrance and liver mets. Deanna

  • zarovka
    zarovka Member Posts: 2,959
    edited March 2017

    Hugs Deanna - Please hang around. As you can see your experience will continue to help us. Xeloda is a great place to land. What is your dose?

    Claire - Shetland is very savvy too but she has run off with some other treatment protocol as well. We do have to be vigilant and even so some of us will progress. However I am optimistic that we will all ride the wave of new treatment options for a long time.

    >Z<

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited March 2017

    "Run off" -- Too funny, Z. I consider you all my friends, so you are stuck with me.Yes, LaLady, I'm feeling good and still dancing! I treasure it in a way mere immortals don't, I think. Deanna, isn't it so much better to have made the decision and started the new treatment? I find looking at trials and making the decision very stressful. I'm hoping to hear that you are feeling well on X.

    It appears that Guardant 360 checks for many somatic mutations, and shows which do and do not show a response to various targeted therapies. However, it does not check for chemotherapy response. The web site says that if you would be expected to have more than a $100 copay, they have an assistance program. I think one thing I would like right now is just to verify with a liquid biopsy that this cancer is still ER+. All I have learned from my onc so far is that my center is planning to start using a ctDNA test, but it is not up and running yet.

  • zarovka
    zarovka Member Posts: 2,959
    edited March 2017

    Shetland - I do feel a bit jilted when people stop ibrance and run off to have fun with all the people on Xeloda or something. It is kind of you to stop by now and again. Makes me feel better.

    I had the Biocept CTC test done. It cost me a $260 copay. They called my insurance company, notified me in advance of the cost. The "problem" is that Biocept found no circulating tumor cells. If they had, Biocept does Breast Cancer panel which gives you hormonal status and some other stuff. They will also do genetic testing, if they find cells, but my NO did not order that.

    I am a little suspicious of reliability of the Guardiant360 for genetic testing. We can PM about my suspicions if you like - it's really just a hunch and people do seem to take me seriously on this forum. But for hormonal status, I suspect they are all the same in terms of reliability.

    I actually think it could be really useful for you to get periodic CTC counts and see, over time if that gives you more data on the status of the Loch Ness monster you are dealing with. Added bonus, periodic double check on the hormonal status. Brilliant.

    The problem is that the test is new, and it is hard to be sure what to do with the results. I would think about it as a long term project ... do your own little experiment on yourself over a few years and in the meantime hopefully the research on the clinical utility will advance.

    >Z<

  • dlb823
    dlb823 Member Posts: 2,701
    edited March 2017

    Z, I am easing into "X" with just 500 mg. 1x/day for the first 7 days. I'm fairly small, and my counts are still a bit low from Ibrance (grans @ just 1000 after two weeks off Faslodex+Ibrance), and my local onc wanted to do it this way. UCLA onc actually recommended starting @ 500 mg. 2x/day, but I figured I'd go with my local onc's suggestion on this one, just so that he couldn't shake his head and say, "I told you so," if I were to get sick!

    And yes, Shetland, I felt immensely better as soon as I downed that first pill! Can't quite explain it, but the anxiety about what to do had been some of the worst I've ever experienced -- totally out of character for me, as I now realize it must have been for you with your recent choice. But I felt like a new woman soon after I swallowed that first pill and realized nothing horrible had happened!


  • zarovka
    zarovka Member Posts: 2,959
    edited March 2017

    Deanna - I love your dose. I love your strategy. I see people on crazy high doses and very sick. I know that overall wellness is a cornerstone of your strategy ... mine too. This is going to work well. Thanks for stopping by.

    >Z<

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited March 2017

    Z, it has been almost three years since I had a biopsy. My onc muttered recently, "Let's hope it's still hormone-receptor positive." So I want to do a test and not fly blind. I'm going to have to bug her about this. Or maybe if my TMs are not down on my next blood test, I will insist that she recommend some kind of liquid biopsy to check hormonal status. For all I know, that is her plan, too. TMs are very accurate for me.

    Deanna, exactly. A week on a half-dose seems like a good idea. I did a half-dose of Afinitor for almost the first month, though I was ready to up it after two weeks.

  • lalady1
    lalady1 Member Posts: 530
    edited March 2017

    Shetland and Deanna - please stay with us. We need to hear how next meds are handled, SE's and all. Glad you are easing your way into X. I love Bestbird's guide, but the best info is from savvy ladies like you! Also noted Pajim is on something else now too. Pajim - tell us more. All of us must keep an eye on the ball, listen to our bodies and seek 2nd opinions. I am very happy at UCLA (like lovely D) but had a rough time 5 years ago at Cedars (nearly sued them) - hence the change. I am doing fine on round #16, just the usual dripping eyes and fatigue. I took a nap for an hour yesterday. But since I was working from home, that seemed ok. As for my summer travel, I am realistic to get these big trips in now. I am not waiting for Ibrance + fas to fail. Nuff said. (())

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited March 2017

    Carpe diem, LaLady.

    Yes, we all benefit from the support here, and also from the information, tips, news, ideas, and discussion. It makes us more informed patients and I believe we will do better because of it.

  • JoynerL
    JoynerL Member Posts: 1,392
    edited March 2017

    The support and knowledge base here is phenomenal. I am about to meet with my doctor today after finishing my first course of Ibrance day before yesterday. I can see that my blood counts have been dropping (had a blood test yesterday in anticipation of this visit). I surely hope that that's not ominous for my being able to stay on Ibrance. Or, maybe it's the Faslodex. I feel as though we have to become online pathologists in order to try to understand our blood work. Z, I want to jump in your brain and have your base of understanding! I'm such a neophyte and worry that I'll alienate my doctor, who is my primary line of defense, if I grill her too hard.

  • kachincolor
    kachincolor Member Posts: 62
    edited March 2017

    Hi All,

    Am happily ensconced in a beautiful condo on the beach in Florida as a result of cancelling our birding trip to Santa Fe for three weeks when the treatment plan change from Xeloda to Ibrance and Faslodex. Have had two sets of the Faslodex shots and and just finishing the Ibrance. Feeling totally wiped out today -- hardly could get outside and am missing a beautiful day weather wise. Know I pushed it a bit with the walking (four to five miles each day for the last 10 days) but how can one pass beach walking or walking in warm weather?? Trying not to beat myself up or focus too much on feeling punky. Have developed a generalized headache, a tummy ache and blurry vision (all standard SEs of this combination) but for me it is always unnerving --my stage four wasn't found until my leg nearly broke!

    Thanks for being here -- and well wishes to all.

    Kimberl

  • zarovka
    zarovka Member Posts: 2,959
    edited March 2017

    Joyner -

    The main thing need to know about bloodwork and Ibrance is that your absolute neutrophil needs to be above 1000 (or 1, depending on the units they use) on the day before you start a new cycle. It's worth familiarizing yourself with the Pfizer Ibrance dosing guidelines ... just google them. I find I have to remind my onc to test periodically so it's good to know when and why we do bloodwork on Ibrance.

    I assure you that you do not want to jump into my brain. Did you ever see Being John Malkovich? If so, it's worse. A lot worse. You seem to be a lovely person with a great brain.

    >Z<

  • cive
    cive Member Posts: 265
    edited March 2017

    Z, I don't want to be in your brain, but when I'm jogging with the dog, I fantasize that I look like your avatar!  

    Kimberly welcome to the group!  Like you, I have bone and liver mets.  The only side effects I've noticed is a little indigestion and fatigue.  


  • JoynerL
    JoynerL Member Posts: 1,392
    edited March 2017

    Girls, this may be total coincidence. However, it may be worth reporting. At the suggestion of several on the site, I starting taking the generic version of Claritin (loratadine) two days before receiving my first shot of Xgeva. I received my final loading dose of Faslodex just before the Xgeva. In the past, the Faslodex has given me a very sore fanny for 48 hrs or so. In this case, I didn't have any soreness at all after receiving the shots. I wonder whether this was luck or the Claritin/loratadine? And, I have had no pain at all with the Xgeva so far.....

  • zarovka
    zarovka Member Posts: 2,959
    edited March 2017

    cive - the avatar is from the last half marathon I ran, pre-diagnosis. I am no longer that buff but I like to imagine I have another half marathon in me, some day.

    Joyner - it is interesting to see if this happy news persists with shots in the future because then it is more likely that we have a causation rather than just correlation. that's a good thing because then your experience with loratadine may help others. however, the main thing is you are not pain. pain is extremely disruptive even when it is mild. so glad to hear this whatever is cause.

    >Z<

  • kachincolor
    kachincolor Member Posts: 62
    edited March 2017

    Joyner,

    Thank you for the Claritin suggstion. Xgeva takes me down every time I get the shot...and the last Faslodex shot hurt for 72 hours! I am definitely going to try Claritin this time

    Has anyone heard of hand/foot syndrome on this combination? Or on Ibrance? My hand/foot syndrome faded immediately after I stopped Xeloda but as I am finishing my first cycle I am getting blisters on the bottom of my feet and my fingertips are turning red again! Such a bummer because I am really on a roll with walking and I don't want to miss my daily four-six miles!!

    Kimberly

  • lalady1
    lalady1 Member Posts: 530
    edited March 2017

    Kimberly - HFS is generally Xeloda, not Ibrance or faslodex which have their own SE's; namely fatigue, low blood counts,mouth sores and hair loss. So please show those blisters to your onc as they could be the tail end of Madame X in your system or something else. And a heads up to all ladies on Xgeva, my dentist says it stays forever in our systems and can cause osteonecrosis. One of our ladies occasionally posts about hers. I stopped Xgeva after the second shot, as it was bad enough to get a jaw met let alone something worse. (())

    Claire

  • pajim
    pajim Member Posts: 930
    edited March 2017

    Kimberly, one of my friends got hand/foot syndrome on Ibrance. I personally haven't had any trouble but it does happen.

    I'd guess you're more susceptible because you had it with Xeloda.

  • JoynerL
    JoynerL Member Posts: 1,392
    edited March 2017

    Holy cow, Claire...I thought that Xgeva was supposed to protect the bones, not cause its physical deterioration/death of the bone. I'll talk to my dentist and my onc. Thanks for the heads-up.

  • dlb823
    dlb823 Member Posts: 2,701
    edited March 2017

    Just a followup comment on what Claire's dentist advised about Xgeva. We may each have somewhat different situations, but my UCLA onc cut back my Xgeva dose from monthly to every 3 mos. shortly after I started on Ibrance. Her concern is that there may be more of a risk for ONJ with Ibrance, possibly because of continually low blood counts. It's based totally on anecdotal information -- no research yet, just patients who had been in Ibrance trials (so several years on that med) now showing up with ONJ. But her conviction is strong enough that she was insistent that I cut back to be on the safe side, even though I didn't want to. So this info' -- and I know Claire is also @ UCLA -- may be somewhat ahead of the curve re. what a local dentist or general oncologist would know.

  • lalady1
    lalady1 Member Posts: 530
    edited March 2017

    Hi Deanna - yes, thanks for weighing in. :) When my jaw met showed up, my UCLA onc stopped it completely. Here is a link to Xgeva and Osteonecrosis http://www.breastcancer.org/research-news/20111202 Then my cancer dentist told me about $$ lawsuits that big pharma settled http://www.youhavealawyer.com/conditions/osteonecr... His take was Zometa was more risky than Xgeva, but ONJ is really a bad SE. Pajim - how are you doing on A/A - are you still taking it with Ibrance? Any SE's? Hello to SP! I have my PET on Thursday and start round #17 (lumpy butt et al) the following week. weee!

    (()) Claire

  • kachincolor
    kachincolor Member Posts: 62
    edited March 2017

    Pajim, Thank you so much for sharing that you know of someone who had this on Ibrance. My MO is out of town and other MOs in the practice deny having heard of anyone on Ibrance with this side effect. Have been off of Xeloda for over a month. My hand/foot wasn't too bad on Xeloda so I am surprised. My MO is on vacation and her nurse is recommending that I stop Ibrance until we figure out what is up....but I will finish my 21 day cycle tomorrow! Just need this to work as I am batting 0/4 on treatment regimes. MY MO didn't feel a need to check labs at two weeks so will have labs on Friday. Wonder if hand/foot may indicate anything sinister with my liver :(. Hate feeling anxious! Again. Thanks for the feedback!

    Kimberly

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