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Faslodex + Pablociclib(Ibrance) treatment combination -

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Comments

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

    naturegirl, sounds like you're doing great on the Ibrance! Just fyi, my UCLA onc doesn't even test mid-cycle, although I know some oncs do, especially at first. But it sounds like you're going to be fine. And if your counts dip below 1.0 (1,000) next week, chances are they'll pop back up within a few days. Mine always have. By the way, there are a couple of excellent charts recently posted on the Ibrance thread that show how oncs should be interpreting the wbc count, when to hold Ibrance for a few days, and when to reduce the dose, if absolutely necessary.

    To answer your question about scans, since my TMs have been dropping and my pain level is greatly improved since I've been on Ibrance+Faslodex, I haven't wanted or felt the need for scans. But I just saw my UCLA onc this week, and we agreed that since it's been 6 mos. since my last scans and starting this new regimen, it's time to do them again, probably in a couple of weeks. So we'll see what's going on then. Deanna

  • jobur
    jobur Member Posts: 494
    edited January 2016

    Naturegirl, Glad you got good news from your labs. Have you had any se's since starting Ibrance? Happy Birthday (a little early) and hope you enjoy your trip. You may feel a bit of fatigue, but it helps to be busy and doing something fun, so a little travel may be just the thing. I'm glad if my post was encouraging, I always feel reluctant about posting my so far good results when I know others are suffering.

  • Sarah0915
    Sarah0915 Member Posts: 81
    edited January 2016

    I have been on Faslodex for a year and after my tumor markers started consistently rising every month we added Ibrance. After 3 cycles, my tumor markers have dropped from 467 to 186 and I am feeling much better. The fatigue is difficult sometimes and my hair has thinned quite a bit but I am pretty happy with the results so far. My white cell count dropped below normal the first cycle but has steadily improved and is back withing normal ranges.

    I used to do scans every three months but based on what the scans were showing compared to my tumor markers and the way I feel, my MO and I decided to not do the scans until something changes or for at least six months.

  • naturegirl2
    naturegirl2 Member Posts: 219
    edited January 2016

    dlb823, interesting that some onc. do not test WBC mid-cycle. I won't know if they dip next week or not as my next monthly blood work is on the 22nd. Keeping my fingers crossed. I'm hoping I can go on my mini trip since part of the trip I'll need to take the last 2 pills of my third week, but, I'll have the other 2 days on my off cycle time. Thanks for the encouragement. I'll have to check out the Ibrance thread and review the charts you spoke of. Thanks. It's really good Deanna that your pain level has diminished since on this combo. So you began both at the same time 6 months ago? I have been on Faslodex for 11 months, and just started Ibrance almost 3 weeks ago. I'm wondering if starting the combo together sees better results than adding the 2nd to the mix some 11 months later. The only reason my oncol. added Ibrance is my cat scan showed some progression. He did tell me when I started Faslodex back in Feb. 2015, Ibrance wasn't on the market yet for that combo. Hope your upcoming scans will be great! Let us know.

    Hi jobur, thanks for the upcoming birthday wishes! I am looking forward to this trip. And yes, it should take my mind off what is happening. I do want to drink some. Has anyone drank alcohol while taking this combo? Reactions? jobur, I did have a SEs after the 3rd day in taking Ibrance as I started with cold symptoms, sneezing, runny nose, congestion, i.e. head cold. It took some 9 days before I began feeling better. I still have remnants of that. I've had 'tender to touch' scalp as well. Not complaining, just hoping this combo will do the job that it is supposed to. My oncol. said he will order another cat scan in several months depending on the numbers he sees on my upcoming lab results.

  • jobur
    jobur Member Posts: 494
    edited January 2016

    Naturegirl, I have a wee glass of wine several times a week. I know some will think this is just terrible, but I haven't noticed any ill effects. Once in a blue moon I might have 2. When I asked my mo about this, she said she tells people to "live a happy life" which I took to mean moderation, not deprivation. Do be careful though if you are on any type of pain meds as the effect will likely compound. And heed the warnings on anything else you might be taking to ensure it doesn't react with alcohol. Hope you have a fantastic trip!

    Hi Sara, your results sound much like mine, except my tumor markers have never been helpful. Have you ever looked at your RBC counts? Mine have stabilized along with the WBC so they are just inside of normal on the low end. The fatigue is the only se that really bothers me. I sometimes wish I had not been so quick to add Ibrance to Fas, as I had very few se's and good results with Fas alone. Hope we both continue to do well on this combo.

  • AmyQ
    AmyQ Member Posts: 821
    edited January 2016

    I have been on a rollercoaster ride for over 30 days now getting Ibrance filled for the first time and sent to my house. Essentially it was approved immediately by my insurance which completely amazed my physician's office. Then the specialty pharmacy was suppose to contact me - they didn't so I called them - had a 36 minute conversation which ended with the statement, the drug will be sent overnight by FedEx tomorrow - which was this Tuesday. Here it is Friday and no Ibrance so I called the specialty pharmacy - appears the insurance hasn't been approved after all so they need approval to come from the doctor. What? The doctor wrote the script in the first place - I'm so confused and frustrated. I just left a message for my onc to call insurance, to call the pharmacy - feels like a game of post office for any of you baby boomers out there.

    In the meantime my hip is starting to hurt again, which is always the first indication of active mets. I'm getting really steamed over this blame-game. And now I worry I'll jump through these hoops every 30 days for refills. Really?

    Arggg


  • Sarah0915
    Sarah0915 Member Posts: 81
    edited January 2016

    jobur - Yes, we do a CBC and Chem ? (a lot) panel every month and so far no change in my RBC count. That is one thing I have been watching closely with the WBC and liver enzymes which are always slightly elevated because of live mets most likely.

    My doctor feels the same about a glass of wine several times a week. His comment is always do what you want to do and enjoy yourself. I know it isn't good with liver mets and we even changed my pain meds to get away from the Tylenol in Vicodan. But I plan to continue having a glass of wine when I want it. I actually find there are lots of time I have no interest in it and I can't drink red wine any more. Actually, the smell of it kind of bothers me if someone is drinking it nearby. I've also found that my taste has changed and I like the more expensive stuff better so I spoil myself with wine that I never would have bought before.

  • jobur
    jobur Member Posts: 494
    edited January 2016

    Sarah, As I have heard on the Faslodex thread, "Drink the good stuff" Cheers! May I ask where your RBC, hematocrit, and hemoglobin fall? Are they well into the normal range or hanging on the low side of normal? That's where mine have landed since coming to Ibranceland, before all was well into the normal range.

    Amy, Sorry you are having such a hard time getting your Ibrance. Hope once it get straightens out it will be much less of a hassle. You are still getting Fas injections, right? Try to rest your worries a little, you are still getting tx and hopefully your insurance problems will soon be behind you. Were your rads last year for your hip?

  • AmyQ
    AmyQ Member Posts: 821
    edited January 2016

    jobur, you're right, still getting some form of treatment which I'm very comfortable with. The only SE I seem to have from Faslodex is occasional hot flashes and a greatly diminished appetite, mind you, I'm not complaining. Yes rads were last year and I'm sure I've made a complete recovery; in fact, last PET showed an almost complete reduction in metabolic activity to most spots. I couldn't be happier.

    Amy

  • jobur
    jobur Member Posts: 494
    edited January 2016

    Amy, Can I have some of your diminished appetite? I'll trade you a couple of hot flashes for it! (Trying to be funny here...)

    Are you ready for the next cold snap? Brrrr! So much for our El Nino winter. Hang in there!

  • AmyQ
    AmyQ Member Posts: 821
    edited January 2016


    I can see it, a card game in a nursing home

    "I'll trade you four hot flashes for three diminished appetites and one mild hair loss. Ha!

    I just hate January. We always get subzero temperatures and you're right, El Niño means milder weather. What the heck?

    Stay warm and dream of Carribbean beaches.

    Amy


  • naturegirl2
    naturegirl2 Member Posts: 219
    edited January 2016

    Sarah0915, sounds like good news for you in recently adding Ibrance since taking Faslodex from Jan-2015, what a good response you are having! Also good to know your WBC regained momentum after your first cycle. Gives us more encouragement, thanks my dear!

    jobur, & Sarah0915, :) on the wine thing :), fortunately I'm not on pain meds so will have a few glasses of some type of alcohol, not decided which of yet to celebrate my birthday! I like liquors, i.e. lemoncillo over ice for starters. Cheers!

    AmyQ, hope your insurance dilemma gets straightened out soon for you. I know you don't need the added stress at this time.

  • Sarah0915
    Sarah0915 Member Posts: 81
    edited January 2016

    Jobur - my RBC, Hgb, and hematocrit have all been hanging between low - mid normal range. They do vary slightly each month but have never dropped to a level that we have been concerned with. I just looked back at my labs from when I started Ibrance and those levels were more consistent at the mid range. Thought I was keeping a close eye on them but thanks for making me go back and look at the older ones. I will pay more attention to them now because they have dropped some.

    Amy, I love your sense of humor and would enjoy playing cards with you in the nursing home. As for the Caribbean beaches, I'm headed there in about two weeks. I made the joke when I got my stage IV diagnosis that "at least I won't outlive my IRA". I am very fortunate that I had a good career and I don't have kids to worry about ,so I'm trying to enjoy every penny of it. I need that sun on my old achy bones and joints. I'll do my best to send some your way. Hope everyone gets their insurance problems straightened out and keep looking forward to that warm sunny weather.

  • masonsmawmaw
    masonsmawmaw Member Posts: 119
    edited January 2016

    Hi girls!

    I still feel like a newbie on these sites even though I'm about to start my fifth round of Ibrance/Faslodex/Xgeva. Quick question....why is it called "loading" Faslodex shots? You all are simply amazing with all of the insights and info that you share. It is beyond helpful!! I will have a PET scan on Thursday, the first scan since my dx of mets to bones in July. Of course, my onc was completely against it and insisted that I didn't need a scan until at least a year had passed as long as my TM's were stable or declining. I just didn't fee comfortable about waiting that long and insisted on a scan so he has set one up....just to shut me up I'm sure! Regarding SE's, I am finding that they definitely get more tolerable with each passing month! My biggest complaint is the incessant, sticky eye watering that starts up about mid-cycle and lasts until my week off. If that's the worst I have to deal with it, I'll take it :) My blood counts have remained stable enough to stay on the 125mg dose with no missed or delayed days.

    Praying for these continued good results and praying the same for all of you!


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

    Masonsmawmaw, after taking a quick look at a couple of research docs, I think the answer is, giving that extra loading dose mid-month the first month gets a more effective level of Faslodex in our bloodstream quicker, without having to up the dose to 500 mg. all the time. Evidently, research on various doses does not support using a higher dose on-going, but did show it was helpful to get the drug working. Hope this makes sense! Deanna

  • famsupport
    famsupport Member Posts: 3
    edited January 2016

    Posting for a family member who is having a very difficult time with Ibrance: dehydration, constipation, exhaustion. (The Faslodex she has adjusted to, having been on it since May 2015). Started on 125 mg ibrance (had 3 cycles), which was reduced last month to 100 and this month to 75. The first four cycles she ended up in the hospital with severe dehydration and exhaustion. And she drinks 8 oz of liquids every hour all day long.

    This cycle she is on 75 mg for the first time and the first week she felt better than previous first weeks so was optimistic, but today is day 12 and she is getting fluids as outpatient having just had them on Friday. Her MO said this morning that if she does not bounce back even a little they may need to consider taking her off ibrance, at least look at alternative ways to increase tolerance.

    I should say that this lady has a history of poor tolerance of any chemo and radiation. She's been dealing with this disease since 1996 and is now 64. Any insights or tips gratefully received. Thanks, ladies.



  • artistatheart
    artistatheart Member Posts: 1,437
    edited January 2016

    I had trouble with Ibrance elevating my liver enzymes, rapid heart beat, breathlessness and definitely got dehydrated. I was always on the 125 mg and my WBC stayed in a fair range but all the other stuff was making me feel very poor. They took me off to see if the enzymes declined, which they have, and the other SE's cleared up very quickly. So apparently I had a poor tolerance to this tx as well. I feel so much better but disappointed as it was effective for me. I am hoping to try the 75 mg dose down the road....

  • shelbymarie73
    shelbymarie73 Member Posts: 35
    edited January 2016

    hi ladies! I'm still waiting on insurance approval for Ibrance. My oncologist and I agreed if it wasn't approved by the end of this week, I'd move forward with a new chemo instead. I have been off chemo now for 4 weeks and with a grade 3 and my markers being worthless he doesn't want me to be off anything for too long a period. Continued thanks for all of the tips!

  • lalady1
    lalady1 Member Posts: 530
    edited January 2016

    Hi Ladies, I am on day 12 of my new duet of Faslodex/Ibrance 125mg. Joined the IV club on Xmas eve with a pleural effusion. So far I have a major stiff neck and lower back pain. Wondering if this is due to arimidex (the culprit of my wet sleepless nights) or Ibrance? Made a mistake at Juice It Up (drank something with pineapple sherbet by accident) felt bad right away. Do not do this. Pineapple and Ibrance are a no-no (warnings in paperwork). I get my second round of shots on Thursday (day 14) at UCLA and then every 4 weeks. Getting left lung drained after fas shots. Next day getting on a plane to Park City for 4 days. I am very tired, but the neck stiffness is the worst. No pain meds yet - I need to function mathematically in my job, but wondering what works? Saying yes to the occasional glass of high class white wine (red wine tasted bad after chemo as did colas). Definately will hydrate more after reading this thread. :) Thank you all for tips - dlb823 your insight is wonderful.

  • moissy
    moissy Member Posts: 371
    edited January 2016

    Lalady - Good luck with your new treatment, Hope your pain level decreases. You can rest easy on the pineapple sherbet. It is actually grapefuit/grapefruit juice that needs to be avoided with Ibrance as it can cause an increase in the level of Ibrance in your blood. I haven't seen any contraindications for pineapple anywhere. So feel free to juice it up!

  • AmyQ
    AmyQ Member Posts: 821
    edited January 2016

    Insurance finally figured out so Rx delivered to my house yesterday but I'm out of town until Monday so will report back after a few days on Ibrance. Next Faslodex shot it Tuesday. It always effects my appetite in a negative way. In other words, zero appetite. Takes me close to three weeks to recover. But in the meantime I lose about 10 pounds. I wonder if that will ever straighten out.

    Later ladies

    Amy

  • AmyQ
    AmyQ Member Posts: 821
    edited January 2016

    btw, I heard grapefruit and grapefruit juice are to be avoided but no mention of pineapple

  • lalady1
    lalady1 Member Posts: 530
    edited January 2016

    Thanks Moissy and Amy- it was grapefruit to be avoided, but I had reaction with pineapple too, so staying away from both. Getting on a plane tomorrow, taking wheelchair both ways. Day 14 got second shots of fas along with 450cc fluid donated from left lung. Lower back is extra sore where drain was and after pet scan results that sternum, T10,L1 and L2 lit up like Xmas tree, plus one micronodule in my left lung. Very scary. Staying on same cocktail, so ordered Ibrance for first time today -supposed to arrive Tuesday. $10 on credit card was good news. Hoping for better pet scans in a few months. Onc said that sore neck was good sign that body is fighting the disease. I'm trying Ultrum for back pain. I have sticky eyes masonsmawmaw, so you are not alone. You ladies make me smile.

  • shelbymarie73
    shelbymarie73 Member Posts: 35
    edited January 2016

    Finally!!! I got my Ibrance rx last week. Was told to start 7 days after my shots, which are now schedule for tomorrow at 2:00. MO called and said to start Ibrance tonight! Should I take zofran or compazine before?

  • jobur
    jobur Member Posts: 494
    edited January 2016

    Shelbymarie, Official welcome to Ibranceland! I wouldn't take any anti nausea drugs before, but do make sure you take it after a meal. I suspect it will take days or weeks before you will notice anything different, if you do at all. With the chemos you have been on recently, I think and hope you are going to find Ibrance a pretty easy treatment.

    Are you just starting Faslodex too? If so, be sure to read the tips on that thread, thanks to pajim they are right at the top.

    Good luck and keep us posted as to how it's going.

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

    I agree w/jopur. Never heard of anyone being so nauseous that they need anti-nausea meds for it, and certainly not prophylactically. The few times I've had any nausea, it was more like a quick wave and it was gone. Just be sure to take it with or immediately after a meal.

  • shelbymarie73
    shelbymarie73 Member Posts: 35
    edited January 2016

    Perfect! Thank you! Zoladex and Faslodex shots tomorrow at 2:00. CBC check next week to follow counts.

  • naturegirl2
    naturegirl2 Member Posts: 219
    edited January 2016

    I had my appt. with my oncol. today along with getting Faslodex shots after his visit. I took my first cycle of Ibrance, then was off the 4th week as protocol. I was supposed to start back on Ibrance today(2nd month/cycle) but my Gran # was 0.6 from lab work taken today, soooo, my oncol. wants me to stay off Ibrance for another week, returning for a CBC a week from today. He also mentioned he may want to lower my dosage. If the white blood count looks better and up to what it needs to, I will get back on Ibrance at that time. It seems he looks at two things in regard to white blood count, the WBC which mine was 2.26 today, and the Gran # which was 0.6 as of today. I think the Gran # needs to be at least 1000 to continue on Ibrance. He said all my other lab work looked fine. I'm a bit disappointed but I surely don't want things to go awry. Did this happen to anyone on their first cycle or later cycles for that matter?

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

    naturegirl ~ It happens to me every time, although I haven't been quite as low as you are. Mine always goes to 800 (on Day 28), so I wait 4 or 5 days to restart. Have not had to go below 125 mgs. and don't even get re-tested now, although I did the first time. There was one cycle (December) when I had gotten sick while traveling, so I waited almost 15 days to restart -- b'cuz my onc did want me re-tested that time, to be sure grans had recovered -- and they were @3100! So try not to worry, and let's just hope yours rebound in a week! Deanna

  • ninaca
    ninaca Member Posts: 228
    edited January 2016

    Hi- I've been on the Ibrance thread but I am Ibrance/Faslodex so it's good to get more specific here. I'm on my 6th cycle and reduced dosage after 4th cycle, to 100 mg. I feel much better with the lower dosage. I prevent Reflux by taking Pepcid Antacid daily which has worked very well. The pharmacist said the other Antacids had a mild interaction with the Ibrance, but not Pepcid (generic Famodtidine I think). My coordination of starting Faslodex and Ibrance on the same day is non-existent since I had to take two weeks off for a while (low ANC count). At least the Faslodex is consistent. I was on Femara for 14 years before it starting failing me this summer, and when my liver met returned I was switched to the Faslodex/Ibrance combo that had just gotten great press. My tumor has shrunk slighly and the markers are down 100 points, mostly by the 4th cycle of treatment. I love the results so far. They don't call Ibrance chemo, but targeted therapy. I think of it as chemo because it's another chemical in my body but oh well. Still some Side Effects that pop up but I can deal with them fairly easily, especially since reduced dosage. Take care all!!