Faslodex + Pablociclib(Ibrance) treatment combination -

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  • Smellimd82
    Smellimd82 Member Posts: 10
    edited February 2016

    hi lovelies! I'm Kelli. Don't post often here but wanted to drop in to say hello. I've been Ned on Faslodex and xgeva for going on 16 months. My onc added ibrance 6 months ago (prescribed a "ghost" rx of femara so I could get ibrance while on Faslodex due to encouraging results in delaying progression: I've had 0 blood count issues and hope to ride this train as long as I can. I'm 33 and have bone mets only at this time. If you're interested, I invite you to find me on Facebook at Kelli Parker . I support a 3,000+ group of men and women with mets and would love to help in any way I can . 😘😘


    Kelli

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

    Hello. I am on the "Ibrance 2015" thread but just happened to read this one, and saw AmyQ's question. I have copied a chart that shows when a dose reduction is recommended. The trick is interpreting it correctly. AmyQ, you gave your WBC numbers, but do you know what your ANC was? Below I see that if you have a certain ANC number along with an infection, it says to resume at the next lower dose. Maybe ask your onc to show you where you fall on this chart?

    https://www.pfizerpro.com/product/ibrance/hcp/dosi...

    Edited to say that the formatting of the chart would not work when I copied and posted, but you can look at the link.

  • AmyQ
    AmyQ Member Posts: 821
    edited February 2016

    My ANC is 1.1 but I couldn't intrept the link to my results, however my onc presumably is following guidelines so I think I'll restart at full dose, have a blood draw in a week and see what happens. Thanks to all who weighed in to talk me down. I keep worrying I'll be one of those patients who dies from the cure and not the disease.

    Hugs to all,

    Amy

  • naturegirl2
    naturegirl2 Member Posts: 219
    edited February 2016

    AmyQ, sounds like you have been thru the mill and back. But hopefully, the worse is over in your initial taking of Ibrance. As others said, your body needs time to acclimate to this new drug. I think you made the right decision in restarting the same dose and having your blood checked as it should be checked. Maybe your doctor will reduce your strength of Ibrance. It's a wait and see thing as to how you do or anyone of us for that matter. The end of my first cycle, I had to stay off Ibrance for two weeks rather than one week (protocol)after the third week first cycle. With my second cycle, I had to stop Ibrance two days or 2 pills during the end of the third week. It will be interesting to see what my lab results will be on Wed. as to whether I start 3rd cycle/month of Ibrance or have to hold off. At any rate, I do want to continue on the 125 ml. dosage as that is what my doctor wants and that makes sense to me as well as I want to zap the cancer in my body or at least hold it back for as long as possible. I did read though on information sent to me from the manufacture of Ibrance that dosing is according to patient's weight. How interesting. I confronted my doc. early on and he said protocol is 125 mg. initially and he can always reduce dosage if needed. Hope this helps.

    pajim-what I do is after dinner, which is around 6-6:30 pm, I wait ten minutes then take my Ibrance. I ALWAYS sit up for AT LEAST 2 hours before lying down. I've not had digestion problems of yet. Also I drink plenty of bottled spring water through the day and night and shy away from spicy foods. Hope this helps!

    Welcome Kelli, great to read you are doing so well on Faslodex/Ibrance/Xgeva! Hope you stay NED for many many years, Congrats! Thanks for lifting our spirits and hope and the invite to join in facebook.

    ShetlandPon-thanks for the live link on dosing and interpretation.

  • jobur
    jobur Member Posts: 494
    edited February 2016

    Hi all, I just got last week's PET scan results and radiologist report says "findings suggest a continually positive/complete therapeutic response to recent chemotherapy." The rad reports always mention chemo, which I've never had, so substitute Faslodex and Ibrance for chemo. Less than a year ago I had progression in my bone mets with one area of pelvis having an SUV of 9, so this is a dramatic improvement!

    Hoping for similar great results for all of you on this tx!

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

    Wow, jobur... thrilled to see your PET scan results!!! It doesn't get any better than complete therapeutic response! So happy for you!!!

  • AmyQ
    AmyQ Member Posts: 821
    edited February 2016

    Congratulations jobur...results like these make it worth while...

    Amy

  • naturegirl2
    naturegirl2 Member Posts: 219
    edited February 2016

    Oh wow jobur, what fantastic news! Really great to hear!

  • lalady1
    lalady1 Member Posts: 530
    edited February 2016

    Jobur - your results are wonderful news! Gives hope to some of us suffering with SE's, but knowing there could be a complete theraputic response is fab.

    Happy

  • elisa7girl
    elisa7girl Member Posts: 2
    edited February 2016

    Hi everyone. I haven't posted in quite some time. I have been on Faslodex and Ibrance combo for about 8 months now. I have the typical side effects, tired, occasional stomach upset, joint pain and such. Nothing too intolerable though. My last CT scan, Feb 2016 showed no progression, so good news. Definitely praising God. I was wondering if anyone else has experienced SE's on their week off. It's not horrible or anything, just in general don't feel great. Would almost rather not take a week off, but realize I need to for White Blood Cell count. I don't know if it is anxiety induced symptoms or just my body reacting to not being on the medicine. I would say more random bone/joint pain, heart racing, feels like lump in throat. I have had various test done over the past couple of years, seen cardiologist and endoscopy. Everything looks normal, so I feel like it is just SE's from the meds. Anyone else???

    Thanks,

    Elisa

  • Ridethewave
    Ridethewave Member Posts: 1
    edited February 2016

    I was on the Ibrance pill 125 mg for two days and my lips and eyes swelled up so the doctor said to stop it. I am on the Faslodex shots for seven months with Xgeva. Has anyone had an allergic reaction to the Ibrance or maybe on a lower dose. Thanks for any help and wishing you all the best.

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

    elisa and Ride, I had a few weird SE's from the ibrance. The main thing was elevated liver enzymes but elisa I also had a rapid heart beat and shortness of breath that became very bothersome in the third week of the cycle. Not so bothersome were achy joints, gummy nasal passages. Also in the first week I had some MAJOR pain in my jaw right where I had a new filling put in recently which was super odd.....It resolved after 2 days and a couple of pain pills. I am hoping very much I can return to Ibrance at a lower dose down the road. Right now I am just on Faslodex and will get a scan mid-March. Fingers crossed......Thanks for the link Shetland. I will have to peruse that later. Amy, any stable or improved results are definitely worth it. That's awesome news Jobur!!!!

  • pajim
    pajim Member Posts: 930
    edited March 2016

    Jobur, congratulations!! May your next 20 scans read the same as this one. (btw technically Ibrance is a chemo, it's just not an iv chemo).

    elisa, ride, I'm brand new at Ibrance so I can't help. Ask me in six months SillyHeart With luck I'll still be taking this drug. . .

  • jobur
    jobur Member Posts: 494
    edited March 2016

    Thanks for sharing my good news with me Ladies! I hope it will be encouraging to those here that are just starting out. I sure never expected to have such a good scan when I first started tx.

    Pam, Is Ibrance targeted therapy or chemo? We already went through this discussion on the Ibrance 2015 thread but no conclusion. I thought maybe targeted therapy could be looked at as a subcategory of chemo. Whatever is it, hope it works! How's the Ibrance going so far? If you start to get a rash or itchy bumps, try a dab of hydrocortisone cream. I lather on the lotion after bathing too, it seems to help prevent the itchies.

    Elisa7, I would say my week off Ibrance is not my best. Seems like it takes most of that week for the fatigue to subside a little, and I notice my GI system seems to function differently that week too. (Dancing around TMI here...)

    Ride, That sounds like the beginning of a bad allergic reaction. Maybe Ibrance is not for you. How were you doing on Faslodex by itself? Seems it can last a long time for some. And a hearty welcome to the stage IV forum! (Sorry you have to be here though.) I hope you will find good support and info here.

  • pajim
    pajim Member Posts: 930
    edited March 2016

    Ibrance 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. My point of view is no better than anyone else's on this. . .Maybe it depends what the target is? Or how broad it is? Or the level of side-effects?

    I'm guessing oncologists would categorize it as "targeted" but the label on the bottle they gave me said "chemotherapy, handle with care".

    So far (5 days in), few problems. I needed antacid the first three days but my stomach has settled down. I assume I have at least a week more before anything immune-system related shows up.

  • jobur
    jobur Member Posts: 494
    edited March 2016

    Thanks Pam, that is the best explanation I have heard yet as to just exactly what Ibrance does. Now if I only understood what a Cyclin Dependent Kinase is. Do you work in the medical or research field? Sorry if that's too personal a question.

  • elisa7girl
    elisa7girl Member Posts: 2
    edited March 2016

    Also a few other random side effects....sometimes I get a weird pressure or I guess pain in or behind my ears. It usually only last a few days. I also get headaches...sometimes 2-3 per week. Sometimes I just feel achy, like my neck or shoulders. And some nasal drainage that comes and goes. Oh and the hair thinning. I was blessed when my hair grew back after initial chemo and radiation. It grew back beautiful, full of body and very thick, so I had a lot to thin and it has thinned a lot. It still looks fairly normal, but after 8 months and continuing to thin every month on this stuff, I fear, I may not have much left soon. So glad it has not affected some of you in that way. Sometimes get a sore and dry throat, but passes quickly and stomach upset is sometimes worse than others. But then I have had a couple of months, where I have really felt pretty normal with few side effects. This month has not been one of those months. The SE's seem to be worse, but again, not really untolerable, just bothersome. I feel for those of you who have had more severe SE's or allergies. My anxiety is better on this regimen, although I still have it. The femara regimen I was on was probably the worst anxiety I had. So glad to be off of that.

    Thoughts and prayers for all of you.

    Elisa

  • pajim
    pajim Member Posts: 930
    edited March 2016

    Elisa, when I started Faslodex I lost about a third of my hair over the first 6 months. After that it stopped. I have the same amount of hair I had two years ago. No idea what Ibrance is going to do. Sigh. Sounds like it'll get worse over time. Lovely. Just lovely.

    Jobur, I'm an admin at a medical journal. My husband is a chemist/immunologist. I have no medical or biological training; I've learned a lot of things via osmosis. Smile

    A kinase (according to Google) is an enzyme that allows the transfer of i-don't-understand-what across cell walls. There are lots of types of kinases in the body. Cyclin-dependent has something to do with the cell cycle. No clue what. There are several CDKs (at least 6?). My assumption is that 4 and 6 were chosen as a drug target because [some] breast cancer cells give off lots of CDK4 and CDK6. My husband understands all this better than I do. I should ask for a proper tutorial.

  • jobur
    jobur Member Posts: 494
    edited March 2016

    Pam, One can learn a lot through osmosis! Thanks to osmosis and my DH I have in depth knowledge of several subjects I could care less about, LOL. Your explanation makes sense to me, and is probably about as much as I can understand without a chemistry or biology class.

    Thanks!

  • AmyQ
    AmyQ Member Posts: 821
    edited March 2016

    Just a quick update that after going back on Ibrance 125 mg for 1 week my ANC and WBC are close to normal - NEVER imagined a different result as dramatic as this one. So our bodies do heal themselves sometime without any extra push. I'm so happy!

    Thanks for the words of encouragement and prayers from everyone here. You truly are the best!

    Amy

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

    That's great news, Amy! So glad to hear it!

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

    Yep, awesome Amy!

  • pajim
    pajim Member Posts: 930
    edited March 2016

    Wooooo!!

  • jobur
    jobur Member Posts: 494
    edited March 2016

    Amy, Happy for you! Our bodies really are amazingly resilient.

  • naturegirl2
    naturegirl2 Member Posts: 219
    edited March 2016

    That is good news Amy!

    I completed cycle 2 of Ibrance except for last 2 days in third week due to mouth sores. As it turns out I am having to stay off Ibrance a second week instead of one week(protocol) due to WBC 3.16 and gran # .09 reading as of 3/2/16. . It seems like a pattern for me as after I took my first cycle of Ibrance beginning 12/30/15), and rather than stay off a week, I had to stay off two weeks. So this cycle (2nd) is the same. I'm hoping to get back on Ibrance come this Wed. after I have WBC lab and hopefully get the okay from my oncol. He did tell me after this round, he may lower my dosage of Ibrance. I called today for my CA 27.29 results and once again, they are higher than the previous month. So as of 3/2/16 CA was 152. Last month it was 121, and month prior to that 100. Disappointed is a mild word to use. He scheduled a cat scan for April 4th. Guess he is waiting to see if a 3rd cycle of Ibrance will do anything good or if it is even working. My question to y'all is how many months of Ibrance/Faslodex were you on before you started seeing better results than previous treatment of something else? I'm a bit concerned here and worried to say the least.

  • jobur
    jobur Member Posts: 494
    edited March 2016

    Naturegirl, Do I remember correctly that you added Ibrance after seeing a bit of progression on Faslodex alone? Apologies if that is wrong and I am thinking of someone else. I can't answer your question about tumor markers from experience as mine are not helpful (CA 15-3 always in normal range, CEA slightly elevated) but I recall there were quite a few people on the Ibrance 2015 thread who saw markers go up for several months before starting to come back down. So try not to feel too disappointed and hopefully that April scan will provide you with good news.

  • JFL
    JFL Member Posts: 1,373
    edited March 2016

    Hi, I just posted on the Ibrance thread as well. Sadly, this treatment is no longer working for me. I take Faslodex/Aromasin/Ibrance. Liver mets have grown substantially and quickly. Bone mets remain fine. I am moving on to Xeloda. Good luck to all of you!

  • AmyQ
    AmyQ Member Posts: 821
    edited March 2016

    JFL, I'm sorry this combination didn't work for you. Prayers that Xeloda does!!!

    Naturegirl, my tumor markers are never accurate for me - even with untreated bone mets, right after my dx my TM's were normal. I'm sorry you are suffering from mouth sores - they can be awful. I do hope Faslodex and Ibrance work for you even if you have to reduce your dosage. Prayers they do.

    Amy

  • naturegirl2
    naturegirl2 Member Posts: 219
    edited March 2016

    Hi jobur, yes, my oncol. added Ibrance 12/30/15 after seeing low progression on Faslodex alone. Thanks for settling me down some. That is what I thought I read a while back with Ibrance with not showing much response for a while then kicking in. My oncol. uses the CA 27.29 test to determine what my cancer antigen level is. Has this happened to anyone, i.e. taking Ibrance for a while before kicking in?

    JFL-sorry to hear that, but, you were 15 months progression free while on Ibrance after being on Aromasin in 12/ of 2014 and then Faslodex on Jan 2015. Wow, three meds at once. Must have been ruff? I wish you well on Xeloda.

    AmyQ, thanks. Just as the mouth sore came, it went, quickly, and there were a few more that same week. Luckily, they really didn't disturb me and I hope it stays that way. Nothing like when I was on Afinitor dealing with mouth sores some time back, whew.

    I'm wondering how effective Ibrance is with three weeks on, two weeks off (since that has been the pattern for me for 2 months)versus a lower dosage but more consistent in time frame? Any thoughts? Not sure which way my oncol. will go with this and won't know if I can get back on the beginning of my 3rd cycle come Wed. He did say he wanted me to stay on the 125 mg for the 3rd cycle since I already have that prescription waiting to be taken.

  • lalady1
    lalady1 Member Posts: 530
    edited March 2016

    naturegirl - My CA 27-29 went up after first round of Ibrance/Fas and then went down round 3 - similar to how I reacted to Taxotere. My WBC was 2.80 last week and still on 125 because Neut is ok. Perhaps our bodies need time to get used to the way that Ibrance attacks cancer cells. Onc also said fas can take 4-5 rounds to kick in as it's slower, but enhanced with Ibrance. Please stay positive that your April scan will show good results. Rooting for you!