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Faslodex + Pablociclib(Ibrance) treatment combination -

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Comments

  • ScienceGirl
    ScienceGirl Member Posts: 35
    edited April 2016

    Hi Wendy - I don't have any weight gain yet. Looks like rapid weight gain is a common side effect of faslodex - Yikes! What a bummer.

    http://www.mayoclinic.org/drugs-supplements/fulves...

    My ANC stayed the same from day 14 to day 21 (read somewhere that the effect is saturable) @750, so I'm able to stay on the 125mg dose for cycle 2. Hoping to continue on for many, many cycles.

  • Longtermsurvivor
    Longtermsurvivor Member Posts: 738
    edited April 2016

    Hi Wendy,

    While I don't have any experience with Ibrance, 6 months of Faslodex didn't lead to any effects (bad or good) beyond sore buttocks and sciatica. Weight gain isn't usually my body's "go-to" response with drugs...sounds miserable to think of gaining half a pound a day. Dose limiting for certain. But what's the culprit?

    Good luck sorting this out and getting to a good response, Wendy.

    warmly, Stephanie

  • kayrnic
    kayrnic Member Posts: 111
    edited April 2016

    I just had Faslodex #2 on Friday. Day 6 of Ibrance. I'm afraid to get on the scale! If weight gain is listed as a "possible" side effect of a drug, it becomes "probable" for me. It sucks!

  • pajim
    pajim Member Posts: 930
    edited April 2016

    Wendy, it's the Faslodex. I gained about 7 pounds and completely lost my waist-line, all in about a week. Susan told us that when she stopped Faslodex she lost 10 pounds.

    lalady, how were the scan results? Hope they were just grand.

    Pam

  • lalady1
    lalady1 Member Posts: 530
    edited April 2016

    Pam - too early for my PET scan results, but I am hopeful. Glad to be off Xgeva, taking steroids last few days to finish drug rash. I'm moderating a panel tomorrow, so hoping the "flush" goes away. I will have on false eyelashes and no waist pants thanks to ibrance/fas - and flats. Hope your conference went well. Wendy - its the fas shots, waist line disappears. But hopefully so will cancer cells!

  • pajim
    pajim Member Posts: 930
    edited April 2016

    Too soon? Yikes! How long does it take? I get mine same day or day after. The one time I told my onc I didn't need to know until Monday I wished I hadn't.

    Conference was interesting. I was a "booth girl" (sweatpants under nice sweater and flats) which is a fair amount of work but I enjoyed it. I hope your panel session went off nicely.

  • lalady1
    lalady1 Member Posts: 530
    edited April 2016

    Pam - "Booth girl" - love that concept. Hope you got to sit down a lot in some fab sweat pants and flats. :) My panel went well, I was a little hoarse from lack of sleep, it was filmed so had hair and lashes on. Then mingled and drove home to rather violent diarrhea, goopy eye draining and sore throat. I'm taking meds today and going to work tomorrow. Suspect Ibrance was the diarrhea culprit, but could be flu. I have to do a webinar on Monday. My PET always takes a few days to get back, not sure why.

  • auroaya
    auroaya Member Posts: 784
    edited April 2016

    Hello every one I introduced myself a few pages ago but I'll do it again in case anyone missed it. My name is Aurora and I've been in the bones thread and other threads since 2013 but my doc just switch me from Abraxane to ibrance/Faslodex and I'll be starting my first cycle tomorrow. I already know about warming the shots before doing it but I was wondering when is it better to take the pills in the am with breakfast or in the pm with dinner. Any other suggestions welcomed. I'm a little anxious as well as excited to start these as I've read good things about this combo.

    Thanks for your input

    Aurora



  • lalady1
    lalady1 Member Posts: 530
    edited April 2016

    Hi Auroaya - everyone is slightly different with their best mealtime + ibrance; for me it's with dinner. I'm not much of a breakfast eater and head out for work most mornings, so I "enjoy" that pill with dinner. I'm on round #4. Hoping you have very few SE's, but be prepared for fatigue. Lots of ladies here to support you.

  • pajim
    pajim Member Posts: 930
    edited April 2016

    Welcome Aurora, I too take the pill 'with' dinner. I've learned that for me it is best to take it after I've finished eating. That seems to hold down the heartburn.

    Zantac and I are best friends. I needed it the first two weeks of cycle 1, and now on the third week of cycle 2.

    The label says it's best to take Ibrance with a meal of at least 300 calories that contains some fat. Breakfast probably makes it as well as dinner.

  • Rachel1
    Rachel1 Member Posts: 80
    edited April 2016

    Side effects from faslodex, Ibrance, zometa. Since I star ted faslodex and zometa in June I've had horrible edema and numbness in my face and scalp. It's been worse since adding Ibrance. I did get a ct/MRI to rule out any other condition. I now have bags under my eyes from fluid retention. It even effects my eyesight and my lower lip has been numb since December. Please anyone else dealing or dealt with this. I can't hsndle this anymore.

    Rachel

  • Wendy3
    Wendy3 Member Posts: 872
    edited April 2016

    Rachel that's terrible I've had some weird finger pain but nothing like what you are dealing with. I hope you find an answer soon😊

  • Rachel1
    Rachel1 Member Posts: 80
    edited April 2016

    Do your fingers stiffen? That has happened to me. They feel like they lock.

    Rachel

  • Cafelovr
    Cafelovr Member Posts: 75
    edited April 2016

    My mom takes the combo, and she had intense edema and redness of her legs. She's on her 5th cycle, and the redness is still there, but the edema is just about gone. She has lost about 15 lbs. so far.

  • Wendy3
    Wendy3 Member Posts: 872
    edited April 2016

    Rachel no it's more of an arthritis type pain.

  • auroaya
    auroaya Member Posts: 784
    edited April 2016

    Hi everyone, I started the protocol today. I had the shots this morning and thankfully they weren't painful at all. The nurses knew to warm up the shot without me even having to ask. Afterward I went to have a body massage and felt fine. Then I took my first Ibrance during dinner in the afternoon. I am excited to be in this combo! I have high hopes for it.

    Thank you for your support.

    Aurora



  • jobur
    jobur Member Posts: 493
    edited April 2016

    Hi Aurora, glad to "see" you again and happy to hear your shots didn't hurt. Hope this will be an easy and effective tx for you.

    Welcome to you too Kay, Sciencegirl, Rachel, and anyone else I missed.

    Best wishes to all.

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

    I also had my shots today (round 9, I think), and while everything seemed to go textbook perfect, several hours later -- after being out shopping for 3 hours, so lots of walking around -- I starting having the worst stabbing type pain in the area of the injections, on both sides. I have no idea what happened -- never had that happen before -- but it was incredibly painful. After I'd gotten home and sat down for about an hour, it finally quit hurting. But it was not fun while it was happening! In retrospect, I'm wondering if the med wasn't warm enough this time, as the lab tech doing them commented a couple of times that she couldn't do it any faster because it was "oily" (her word). She probably took 2 mins per side, which I thought was good at the time, but something set off that pain later. Just curious if that has ever happened to anyone else?

  • Wendy3
    Wendy3 Member Posts: 872
    edited April 2016

    hi Deana that's scary and weird I'm sorry that you were in such pain. I have my next shots tomorrow I'll let you know how it goes and I'll ask about you pain

  • purrrrana99
    purrrrana99 Member Posts: 27
    edited April 2016

    lalady1- I am still on 125, fatigue is ok, much better than chemo (went through with initial diagnosis), I am lucky that I work from home, so naps are possible. I have hair thinning, which sucks since I am still trying to grow it out from chemo. I get pretty bad GERD and my ALT went up a smidge. But TM went from 229 to 108 so hearing those numbers makes the SE kind of worth it.

    Side note, does anyone get muscle cramps more often? My hands and back mostly. Also, with the liver enzymes that get elevated, do they come down at all? Or do they just stabilize?

    Round 6 in 1 week!

  • lalady1
    lalady1 Member Posts: 530
    edited April 2016

    Pam - got PET scan, lungs are clear and sternum is holding (one spot on rib). Yeah! But very congested, thoracentisis drained 750cc out of left lung so I started z pack. Coughing up some greenish stuff which I hope goes away fast. Naturally I'm on a televised webinar Monday, oy. But lost another 4 pounds. Thank you Ibrance! Go purranna - take those cat naps. And look into hair halos if you need one. I love mine and start round 5 on April 28. :) My sister Naturegirl are you ok?

  • naturegirl2
    naturegirl2 Member Posts: 219
    edited April 2016

    hi lalady, my twin sister,

    My mom passed on 4/6/16, the morning of the day I was supposed to have lab and see my oncol. to go over cat scan results which I had to cancel. He told me to come in when I was ready(days later) after I dealt with what I had to with my mom's passing. So, yesterday I went in for lab and to see oncol with results. There is slight progression on the only spot in my liver that had come up on December's cat scans, and a few other non specific spots that they could not determine were cancer. Lungs are holding their own, along with my sternum. Soooo, the plan is to start taking 75 mg Ibrance along with Letrozole (2.5 mg) daily. When he first put me on 125 mg Ibrance and Faslodex shots for this combo treatment in January of this year, I had already began taking Faslodex shots in Febuary 2015. And, since I did well with SE's, or the lack of, he decided to continue me with Faslodex and add the Ibrance. He said he could have gone either way at that time with Letrozole or Faslodex and decided to stay with the Faslodex. My initial meds treatment back in Nov. 2012(when initially diagnosed with Stage 4 BC) was Letrozole for which I stayed on 15 months before progression. So now he wants me to get back on Letrozole and start the 75 mg. Ibrance rather than the 125 mg. He will be monitoring me monthly and will need WBC work as I did when I took the 125 mg. He and I want to give Ibrance a fair shake before we discontinue taking Ibrance. He will closely monitor my results and will once again, order cat scans in either two months or three. I'm sure hoping Letrozole will kick in to help Ibrance. We'll see. So far that, I'll be moving to Ibrance/Letrozole thread. Thanks to lalady, Deanna, jobur, pajim, and others for your support and caring. Also, lalady, please carry on on this thread I initially began as you are doing a wonderful job in response to all.

  • auroaya
    auroaya Member Posts: 784
    edited April 2016

    Naturegirl2 first off condolences on loosing your mother, I can only send cyber hugs and pray for peace for you and your family.

    Thank you for starting this thread and I hope others will continue here to give support and advise to us "newbies".

    Hoping your new treatment works wonders for you.

    Aurora


  • lalady1
    lalady1 Member Posts: 530
    edited April 2016

    My sweet sister naturegirl - ever so sorry about your mom. No loss comes at a good time, but grateful you took some time off before seeing onc. Please check back in with us, since you will now be paired with letrozole. I'll lurk on that thread to visit you. Are your lungs ok - having any pleural effusions? I hope not. I'm kinda alone here with lung mets, well maybe now just sternum mets, except all the symptoms of lung mets via pleural effusions every 3-4 weeks. Cancer is a lonely disease, so I'm very glad to bond with you. Here's some flowers for you and your mom. xx

    Claire

    image

  • pajim
    pajim Member Posts: 930
    edited April 2016

    Naturegirl, condolences on the loss of your Mom. Such a hard thing. I'm also sorry for the minor progression. Very glad it's only minor.

    Lalady, the PET results sound great! The thoracentesis, well, not so great. I hope the z-pack kicks your whatever-it-is to the curb. You might have the crap I had a month ago, but worse. It eventually went away but took a long time.

  • Siri1
    Siri1 Member Posts: 3
    edited April 2016

    Does anyone else have shortness of breath and coughing after faslodex and zometa. I also have low red blood counts. Could that be it? Please need your input😭 siri

  • funthing42
    funthing42 Member Posts: 236
    edited April 2016

    Hi

    Everyone Just started faslodex 500g. 250mg each buttocks. I finally received ibrance. I guess I caved for now I couldn't take the mental anguish of researching all the trials. No one was 100% for surgery because of skin mets. I still think I'm locally aggressive. Weird how on left nodes lit. Plus the additional skin nodule between my breast area appeared shortly after second rads. I still have a tiny 8mm lump on the Rt. So I am still uncomfortable with treatment.

    That they say it's mets and I'm in denial.

    Taking ibrance also did any of you need to start it at a certain time because I have it and my Onc office closed

    I'm afraid just to take it. :(

    No sob just nausea.

  • auroaya
    auroaya Member Posts: 784
    edited April 2016

    funthing I can understand how you are scared it's hard to wrap your head around a mets dx. For what it's worth I have mets to the bones but last year I had two skin lesions one in my armpit and one in my right temple I had a dermatologist remove them and sent them to lab and came back positive for breast cancer so my onco switched my treatment to IV chemo (Abraxane) and now to Faslodex/Ibrance . From what I've read there isn't a "best time" of the day for Ibrance but it should be taken with a full meal so I've taking mine with dinner and so far I feel fine no se's. Also this combo has been approved by the FDA for post menaupause metastatic women and I feel pretty confident it will work.

    Hope you feel better about taking this treatment.

    Aurora


  • pajim
    pajim Member Posts: 930
    edited April 2016

    Siri, it sounds like you are anemic for some reason. Does the shortness of breath go away after a period of time? That plus the edema you mention in the other thread are symptoms of heart issues.

    Ibrance can cause some red count issues, but Faslodex alone (or with letrozole). . .it's unusual.

    Unless it's transient you need a workup from a cardiologist or a hematologist.

  • naturegirl2
    naturegirl2 Member Posts: 219
    edited April 2016

    lalady, glad your PET scans were good! Hope you feel better soon. My lungs are stable and one nodule on lungs is a bit smaller. No pleural effusions, thankfully. Love the tulips, they are so very pretty! Please feel free to PM me so we can remain close.

    auroaya, thank you for your condolences. It's an extremely difficult time in losing my mother as we were so very close. You are quite welcome with me starting this thread. I didn't want to shuffle through some 135 pages on the Ibrance thread but here I am, back on that thread as my combo is now Ibrance/Letrozole.

    pajim, thanks my dear for the condolences.