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Faslodex + Pablociclib(Ibrance) treatment combination -

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Comments

  • naturegirl2
    naturegirl2 Member Posts: 219
    edited April 2016

    lalady, upcoming 75 mg hopefully come Wed. if WBC is okay. Thanks to everyone who wished me well with my upcoming cat scans for this Monday. I really do appreciate that!

  • jobur
    jobur Member Posts: 493
    edited April 2016

    Welcome Wendy! I remember you from the bone mets thread. I could not keep up with you gals over there! Don't let the se list scare you, I have found that they are quite scary for almost every drug, so try to keep an open mind. Are you new to Faslodex too? Wishing you best of luck with your new tx!

    The subject of whether or not Ibrance is chemo keeps coming up. I think pajim's explanation back on page 6 of this thread gives the best explanation I have heard. Hope she won't mind if I repost.

    "brance is a targeted therapy -- it's target is CDK4/6 (Cyclin Dependent Kinase). But it's a chemo in the sense that it is (a) not a hormonal and (b) stops cells from dividing. It's just that unlike Taxol or Adriamycin, it only stops certain kinds of cells from dividing. The latter two stop all fast-growing cells. Ibrance only stops the cells which express CDK4 or CDK6."

    Naturegirl, Please add my positive wishes for next week's scan and good WBC counts too!

    Amy, Pam, and Lalady - Hope you all enjoy your travels, even if some are work related.

  • Wendy3
    Wendy3 Member Posts: 872
    edited April 2016

    lalady thank you question what's up with pineapple I eat a whole one every morning for breakfast with my apricot kernels. So I can't do that either??

    Wendy


  • lalady1
    lalady1 Member Posts: 530
    edited April 2016

    Wendy - Ibrance label warns of bad synergy with grapefruit only. However I had a reaction with pineapple so I am staying away, but everyone is different. Plus I'm on a quartet of lovely pills; ibrance #125, arimidex and fas+ xgeva shots. I think you will be fine with your morning pineapple. Did tamoxifen fail you? Rooting for your new designer drug to keep you progression and SE free. I get my PET on Thursday, rooting for naturegirl's scans too.

  • keetmom
    keetmom Member Posts: 299
    edited April 2016

    Question on others experience on this protocol. ..So stated end of Oct..tumor markers were at 34, scan in Feb was called Stable..tumor markers the we're 47..Onc called it Stable.. Maybe a bit bigger but if so mms..Fridays were 67...I scan end of April. ..am I right in thinking many people go up like this and after 8ish months it starts working??? ( I though I read that time period here) trying not to freak out to much,,

  • Wendy3
    Wendy3 Member Posts: 872
    edited April 2016

    jobur yes I just started a clinical trial on Friday so I got my first two shots and am on this Ribilcon stuff as well. Which is somehow similar to Ibrance. Side effects are scary especially the bit about turning my immune system off which seems to me very counterintuitive to this whole thing.

    Lalady yes my tamoxifen days were a dud started tamoxifen in June last year my tumour did shrink while on it but according to the last pet scan there was progression during this time in my bones. Which did not make sense to me. I was told by several doctors that if the tumour is shrinking than it is shrinking everywhere else as well. Not in my case, when I asked about a bone biopsy to confirm that it's the same cancer I was told yes it was because of where it was growing that it was acting typically like a er+ her- cancer. Slowly I'm starting to get the whole incurable thing. They are throwing darts at a board...

    Wendy

  • pajim
    pajim Member Posts: 930
    edited April 2016

    keetmom, this is going to be a bit long but I'll tell you a story.

    Scans are the only real way to tell progression. Tumor markers can be good indicators for some women and bad indicators for others.

    Two years I was NED. Was on Femara and Faslodex (and Zometa) Last February we scanned, a couple of spots appeared. One in the neck, one in the butt. Tumor markers stay in the normal range. I was a little freaked but my onc says "you feel fine, don't you?" And yes I feel fine. So we decide to wait and do nothing. Four months later we scan again. Maybe a little worse, maybe not. Tumor markers go a little above normal range. By now I'm used to this whole idea so we wait another four months. After all "you still feel fine?". Tumor makers start to rise. 20, 40, 80, 120.

    November we scan again. One spot gone, one new one. OK we say. Do nothing. Over the winter markers take off. 160, 230, 280, 380. At 380 doc says another set of scans. They come back "same as before. Maybe one spot (we're up to four now) is a little brighter". Now I'm a little nervous. MO is a little nervous too. So five weeks ago we add on Ibrance. No idea how it's doing.

    What I'm getting at is that even if the markers are rising, you don't need to switch treatment. We waited an entire year to change. Near as I can figure out, each successive treatment is going to have more of an impact on my quality of life. When you put it that way I'm not so anxious to move on to something else. I get that attitude from my onc.

    It can be hard to think that the cancer is growing, but if the scans don't bear that out, you shouldn't worry. I admit that last year it took a couple of months to get used to it. Luckily one of the other ladies on this board had just gone through the same thing. They'd found a bit of progression but decided not to do anything for a few months. Scan again to see how it's going.


    Naturegirl, lalady, I hope your scans are beautiful.

  • ScienceGirl
    ScienceGirl Member Posts: 35
    edited April 2016

    Hello Group!

    I had my bloodwork on day 14 of my first cycle. ANC = 750 (liver enzyme actually decreased), so we will test again on day 21 - not our original plan, I'm a little freaked out that my ANC (absolute neutrophil count) could dip below 500. Other than that, I have one giant mouth sore under my tongue, it's so annoying, but for some reason I think it's funny - just seems so ridiculous. I'm grateful for not feeling very fatigued or any thing else except maybe a little itchy and thirsty.

    Thank you for the welcome, and so sorry we are all here, but the company is excellentThumbsUp

    Naturegirl and Lalady - good luck with the scan!!!

    Keetmom - It's important to know if the markers are predictive for you. The gold standard is to use the scans to guide treatment. So hard not to freak out though, my markers have been steadily increasing for 9 months. I have to remind myself that my scans are clear and I feel pretty good - stage iv is hard physically AND mentally!

  • keetmom
    keetmom Member Posts: 299
    edited April 2016

    Thanks! Here is another question I correct of the understanding that illness can a use the number to be artificially raised? I feel like I've been fighting a bug ...everyone I work with was sick last week..

    Scan in a month will try to put it to back of mind until then..plan on being around for a long time....don't want to fail out of first stage 4 treatment. .


    My numbers have gone up slowly since getting off chemo in 2012...I don't think they ever droppped..

  • kayrnic
    kayrnic Member Posts: 111
    edited April 2016

    Hi ladies,

    I started day one of Ibrance yesterday and I go for dose two of Faslodex on Friday. My question of the day is.....at what point in the Ibrance cycle is it typical to experience the blood count drops? I get labs in two weeks, but just curious about how many doses does it typically take to experience the count issues? Thanks for all of your help!

  • ScienceGirl
    ScienceGirl Member Posts: 35
    edited April 2016

    Hello Kay,

    It is the Ibrance that will cause the blood count drops and it will effect you in the first cycle if it's going to happen at all. From what I understand blood count drop won't appear say at cycle 4 - it will be similar for each cycle.

    From the insert "Median time to first episode of any grade neutropenia per laboratory data was 15 days" That's why they recommend a blood test at 14days, the counts are probably steadily dropping over those 2 weeks. If your counts are low at day 14 they recommend testing again at day 21. During the off week, the counts should rebound, although maybe not fully. Depending on how you tolerate the drug, a dose reduction might be recommended, see Pfizer guidelines below: ANC = absolute neutrophil count (total white cell x %neutrophils(segs and bands = ANC) For example, my white count was 1800 and my neutrophil % was 42, so my ANC at day 14 = 756 - that = grade 3.

    Blood test at day 14 is only recommended for the first 2 cycles. My onc. says that the first cycle or two should be predictive of one's experience, not cumulative like some chemos. That said, everyone is different. I think someone here is getting weekly blood tests. Does this make any sense?? ha ha

  • dlb823
    dlb823 Member Posts: 2,701
    edited April 2016

    ScienceGirl, I just have to compliment you on your grasp of Ibrance, which I have to say is more savvy than some oncs, and nicely explained. The one thing I will add is that at least one NCI-designated cancer center onc (@DF) has made an observation about wbcs having a possible tendency to drop a bit more around cycle 5 or 6 -- told to me privately by someone here, and which also happened to me, although it's just within 100 pts (like 800 to 700). Also some oncs like mine go by granulocytes, which gives you the same info as the ANC reading. Also -- not to confuse things -- but I now only get tested when I get my Faslodex shots, which, as time goes on, has not exactly coincided w/my Ibrance schedule due to the need to wait a few days beyond Day 28 for my grans to rebound. So by now (cycle 7), I get tested somewhere around Day 28. The last time it was Day 26, but as ScienceGirl said, the pattern is similar enough so that I can easily judge how many days to wait to restart.

  • AmyQ
    AmyQ Member Posts: 821
    edited April 2016

    Count me as one getting weekly blood draw even when I'm off Ibrance. I've been off now for close to 3 weeks and when I start again, it will be at 100 mg. I sure hope I can stabilize soon so I can start to get the full effect of Ibrance and to find out if it's working for me. Good luck to all who are starting on this, or continuing.

    Amy

  • ScienceGirl
    ScienceGirl Member Posts: 35
    edited April 2016

    Deanna, thanks for the info regarding cycle 5/6. My onc. doesn't have much experience with Ibrance, so it's good to hear from doctors/patients who do. It sounds like a pain to have the 2 meds out of sync.

    AmyQ - three weeks is long, that 125mg dose must really done in your system. I hope you can start back soon! I'm wondering if I will continue on the 125mg, but I'm still in cycle 1, so I have to wait and see.

    Anyone getting mouth sores? My platelets were also down, anyone have a problem with their platelets?


  • AmyQ
    AmyQ Member Posts: 821
    edited April 2016

    Kim

    Yes small but irritating mouth sores more like canker sores but small and only a couple. They're the worst

  • Cafelovr
    Cafelovr Member Posts: 75
    edited April 2016

    My mom gets the mouth sores. Magic mouth wash and Biotene works well for her. I guess she's graduated...instead of weekly labs, she goes every three weeks now. She still at full-dose Ibrance...

  • funthing42
    funthing42 Member Posts: 236
    edited April 2016

    Hi

    I need help. I'm extremely upset! No nodes Stage 1 runs a muck!

    I think some will remember me. Anyways I'm not here to whine I promise. I need help deciding how to make a decision.

    I recently found out I had a fourth reccurrence in my left axilla where I never Had cancer. 3 lymph nodes. Pet and tumor markers up.

    Skin mets locally right side. 2 mos. After TCH.

    Arimadex and Aromasin with Lupron. The only defense every offered. Since 2009. I had 4 years before it hit me year after year.

    Now they are pushing Imbrance and latzrole.

    They say I do not have it any where elese.

    But I want a treatment that I can see the progress. I really do not know which forum to go to.

    I want remission gee whiz. These are the best Dr's. Kind and wonderful. I think I need Jack the ripper.

  • auroaya
    auroaya Member Posts: 784
    edited April 2016

    Hi everyone, I'm new to this thread but not to BCO I've been around the bone mets forum and I remember some of you from there". It turns out my tms halve been consistently climbing so my onco has decided to switch me from Abraxane chemo to ibrance/Faslodex combo. I'll be starting Faslodex next week and I'm waiting to hear from my specialty pharmacy for the Ibrance.

    I've read all posts and find it all very informative. I'd appreciate any other comments you might have for me.

    Aurora




    S

  • shelbymarie73
    shelbymarie73 Member Posts: 35
    edited April 2016

    hi all, finished radiation last Friday and started 3rd cycle of Ibrance on Sunday. Still 125 mgs. Thought it would be lowered but now that I'm done with radiation, MO wants to try one more cycle thinking my cell counts can sustain. Going on week#8 with no treatment breaks. I'm super tired but hanging in there. Week off will be end of April then doing scans.

    Good luck ladies!

  • kayrnic
    kayrnic Member Posts: 111
    edited April 2016

    Thanks sciencegirl! That is a great explanation! I appreciate it. Day 2 has been uneventful. 2nd Faslodex is on Friday! One more quick question......when it says "take Ibrance with food" does that mean a granola bar or a full meal? Or does it matter?

  • dlb823
    dlb823 Member Posts: 2,701
    edited April 2016

    Kay, a full meal is preferred. But I've occasionally forgotten to take mine soon after a full meal, so I've eaten a little something and it's been fine. You're just far less likely to experience gastro issues like heartburn and reflux if you have a good amount of food in your tummy to absorb the med. And for what it's worth, I figured out I do better taking it earlier in the day. If I wait until after dinner (which we eat late), I don't sleep as well. But we're all different, so that might not even be an issue for you.

  • ScienceGirl
    ScienceGirl Member Posts: 35
    edited April 2016

    Deanna is right a full meal is preferred, and they aren't kidding when they say FULL(see below) - another reason beside gastro upset is that significantly more of the ibrance will be absorbed into your system with the high-fat and high-calore meal:

    "Compared to IBRANCE given under overnight fasted conditions, the population average AUCinf and Cmax of palbociclib increased by 21% and 38%, respectively, when given with high-fat, high-calorie food (approximately 800 to 1000 calories)"


    funthing42 - Are you saying you want to hit the cancer hard? No reason that any of the chemos would be more effective than Ibrance/letrozole. It's a very good therapy. I would suggest getting a second opinion - you want to have confidence in whatever treatment you are on. Best of luck to you!

    Aurora - Welcome, good luck with your start.

    Shelbymarie - Good to know you are hanging in there with the 125mg dose.

  • dlb823
    dlb823 Member Posts: 2,701
    edited April 2016

    Wow, ScienceGirl, thank you for that direct quote! Someone else once said something about a high fat meal, but I don't recall seeing that exact quote. With a mostly plant-based diet, I rarely eat that many calories at one sitting. I'm thinking avocados and nuts are good things to eat, and I do lots of veggies with olive oil. But I'm wondering if anyone has any other suggestions? I'm already dealing with an expanding midsection that doesn't make me happy thanks to Faslodex!

  • lalady1
    lalady1 Member Posts: 530
    edited April 2016

    Science girl, Kay and Deanna - I agree with full meal, I take Ibrance with dinner and am on round #4. No stomach aches so far, but did have some odd skin rash/itching this week that may be from my round #2 of Xgeva. Anyone have this? Getting my PET scan at noon today. Welcome Aurora. I have lost 5# on ibrance, but lost my waist on Fas shots. I refrain from chicken breast as its loaded with hormones, ditto most beef (unless its free range). Avoiding salad bars due to bacteria and raw fish too. I have not been sick yet, but fatigue is the big baddie for me.

  • purrrrana99
    purrrrana99 Member Posts: 27
    edited April 2016

    Hello Ladies,

    I have been on the Ibrance boards, but I didn't realize there was a board specific to Ibrance/Faslodex. I am on cycle 5, just wanted to say "Hi" and introduce myself.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited April 2016

    Wow, pajim. Your tumor marker story really gives me some food for thought.

    Interesting note, dlb, about the experience for some that the blood count pattern can change for later Ibrance cycles. When my blood test day got moved a week later than usual, we discovered my counts weren't recovering as well as expected based on past experience, and I got lowered from 100 to 75. I was super-fatigued. This may have been around cycle six.

    (I'm actually on letrozole, not faslodex, but I may be switching so I read this thread, too.)

  • lalady1
    lalady1 Member Posts: 530
    edited April 2016

    Double wow - Pam your TM post caused me to rethink all these "numbers". A PET scan is a superior tool since they show so much more organ/skeletal detail, rather than a mere "number", and we are not talking algorithms. I'm waiting on yesterday's scan results, whew. Shetland - how are you doing on your lower Ibrance? Naturegirl - are you joining me on round #4? It's raining here today, which is great for the garden. Too wet to go out this weekend, but looking forward to more roses and orchids. Turns out I had a drug rash from Xgeva, so we are dropping it from my program. :)

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited April 2016

    Lalalady, onthe 75mg Ibrance I feel like I am living again. In other words, fatigue is at a manageable level.

  • lalady1
    lalady1 Member Posts: 530
    edited April 2016

    Shetland - that is so good to hear! I keep hoping to be reduced since I'm still working full time and fatigued full time. grr But onc wants full strength unless blood numbers drop. Welcome purranna - how are you doing on round #5? Are you on 125mg?

  • Wendy3
    Wendy3 Member Posts: 872
    edited April 2016

    Good morning ladies

    I have a quick question I have been on this protocol for two weeks almost and have gained 7 lbs. Has anyone else had this experience? I'm not eating more and I'm working out more I don't get it.