Faslodex + Pablociclib(Ibrance) treatment combination -

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

    naturegirl, my granulocytes typically are at .7 or .8 on or about Day 28 of my Ibrance cycle, and I simply wait another 5 or so days to give them time to rebound, as they did the very first cycle when we checked them a second time before restarting my 2nd cycle and they were at 1100. I just had scans after my 6th cycle, and Faslodex+Ibrance is clearly working -- even with that extra approx. 5 days off each month.

    By the way, I was sick one month (December) and didn't restart for 16 days (from day 28), at which time, even being sick, my grans had rebounded to 3100, which was quite the surprise. My TMs didn't drop quite as much that month as they have in other recent months, but thankfully it didn't seem to affect the overall picture.

  • naturegirl2
    naturegirl2 Member Posts: 219
    edited March 2016

    Thanks lalady. I did not start Faslodex and Ibrance at the same time tho. I've been on Faslodex alone since Feb of 2015. So after some progression ending of fall of last year, my oncol. added Ibrance to the mix the end of December 2015. I'm wondering if Faslodex will once again work since taking Ibrance or is Ibrance standing alone having to do all the work? My oncol. was unsure whether to add Aromasin and Ibrance and drop Faslodex but decided since I had been doing so good in taking Faslodex with no problems with SEs, he decided to keep taking Faslodex even tho I had some progression since Dec. and added Ibrance end of Dec. 2015. Wondering if Faslodex will also begin working again since adding Ibrance?

  • naturegirl2
    naturegirl2 Member Posts: 219
    edited March 2016

    Hi Deanna,

    We were probably typing at the same time :)so I missed your post. All good to hear! I'm hoping I can start my third cycle come Wed and have good vibs about it. That is great news for you after 6 cycles your cat scans were good! Gives us some hope. Thanks Deanna

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

    JFL, Sorry to hear you have to switch again. That is always scary not to mention a pain in the ^%$#! I am only on Faslodex so I am pretty nervous coming up to my next scan. I hope Xeloda is a great med for you. Deanna, woohoo! Great news on the scans. Happy Dance for you! Hope it keeps you going for a long long time!

  • shelbymarie73
    shelbymarie73 Member Posts: 35
    edited March 2016

    Hi all,

    Almost done with radiation to my low back (actulally high hip area) only to have a new pain while getting out of the car the other day, UGH! So, quick x-ray to rule out a fracture. No frx but still significant pain to sit, stand and walk. According to pelvic MRI one of my Ischium (butt bone) lesions has had the cortex broken through (similar to Ilium pain) So, start new radiation spot Friday. Can't radiate both spots at same time as my cell counts are hanging on while on 2nd week of Ibrance. I'm soooo tired and have 3 mouth sores on the roof of my mouth. I've lost 5 lbs even though I'm pretty much chair ridden. DId anyone lose weight while on Fas/Ibrance?

    Nature Girl, glad to hear things are going well for you.

    AMyQ - thank you for the toothpaste suggestion. I will definitely be talking with MO about it.

    Hang in there ladies! Thank you for keeping me balanced!


    xo- shelbs :)

  • AmyQ
    AmyQ Member Posts: 821
    edited March 2016

    Hi Shelby,

    I I estimate I've lost 20+ pounds since Thanksgiving. The loss started while going through rads to my spine. It hit my esphogus which made food almost impossible to eat. At the same time I started Faslodex shots which probably contributed to my poor appetite, then came Ibrance which I know has squashed any remaining appetite I have, thus weight loss. I am fine with ditching these extra pounds and it seems to have leveled off for now, so I'm good.

    Mouth sores are the worst. Every sensation is multiplied by 100 when your mouth is sore. I do hope either the tooth paste or magic mouthwash works for you. My RO prescribed it and I found it to be very effective. Good luck.

    Amy

  • tina2
    tina2 Member Posts: 758
    edited March 2016

    Just popping in to say "hi" and convey my good wishes to my Fanny Pack pals who are now on this thread. I'm still on Faslodex only. My onc wants to hold Ibrance in reserve until indicated, which makes sense to me .

    In the meantime, ladies: daffodils are blooming and spring is coming!

    Tina

  • naturegirl2
    naturegirl2 Member Posts: 219
    edited March 2016

    shelbymarie, I'm sorry you are going through all of what you have to deal with. I think you are the one that can explain to me what radiation therapy is all about. Why is it used and what is it all about? Sorry for asking but I would like to know. Others feel free to join in and school me as wel.

    Amy, Faslodex and Ibrance are doing just the opposite for me, i.e. a hearty appetite and 15 lbs. later.

    Hi Tina, glad you are doing good! Nice to see you here. Join in any time!!

  • AmyQ
    AmyQ Member Posts: 821
    edited March 2016

    Naturegirl, I had rads to kill cancer that showed up on my spine and left hip - areas that were previously clear. The RO explained that he targeted the larger spots on my spine in an area that was close together because otherwise if left untreated I ran the risk of my spine collapsing. I honestly do not know what that means - I'm not even sure if it's possible for a spine to collapse. I think he used the explanation for illustration purposes only. The other reason to hit the cancer with radiation was pain relief. I did receive some relief, mainly in my hip, an area that was so weak I had to physically hoist my left leg up into my car with my hands. My leg is stronger and my last scan in January showed near resolution of the new spots. So for me the rads killed the cancer cells.

    I know others undergo radiation, like my mother is currently, to kill cells surrounding a tumor so that surgeons can get clean margins. Others have rads for pain relief. That's the extent of my knowledge.

    Amy

  • lalady1
    lalady1 Member Posts: 530
    edited March 2016

    AmyQ - those rads sounds painful. I'm hoping you get some relief soon. I'm up 5# with Ibrance/Fas - happy to donate as needed. lol Mouth sores are rough, I used magic mouthwash and a special calcium toothpaste - disappeared overnight. Shelbymarie - that is so tough to read. I had no idea about butt bone pain, but hoping you feel better. Is the Ibrance/Fas helping yet? Are rads given for bone pain or to kill cancer or both?

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

    Wow Tina, that is good to hear and hope Faslodex works alone for me. I can't wait for daylight savings! I think I lost weight over stress from Dx more than anything else. Femara/ibrance did not bother me much besides fatigue, mouth soreness, joints. No stomach issues. Faslodex I seem to be putting weight back on.

  • shelbymarie73
    shelbymarie73 Member Posts: 35
    edited March 2016

    Everything AmyQ said. It's for pain and bone stabilization to prevent fractures through killing cancer cells. I don't know if the Ibrance/Fas combination is working yet I'm only on my second cycle. I'll get a scan in 2 months. Looking forward to MO appointment on Thursday. CBC and toothpaste request!

  • Longtermsurvivor
    Longtermsurvivor Member Posts: 738
    edited March 2016
  • naturegirl2
    naturegirl2 Member Posts: 219
    edited March 2016

    AmyQ, thanks for your explanation of use of radiation. Sounds like it worked really well for you. Thanks shelbymarie for your input on use of radiation as well. Glad to know radiation treatment is an option and can reduce or eliminate fractures as well due to cancer cells. Good luck with your upcoming scans.

    Thanks longtermsur, for the Faslodex/Ibrance study link. So it sounds like a study was not done on reduced dosage of Ibrance. Would be interesting to see how that would turn out. I may be headed in one month for a reduced dosage of Ibrance as my oncol. mentioned it to me since I had to hold off two weeks instead of protocol one week on my first and second month of Ibrance. I got my results today, after being off Ibrance for two weeks, WBC 4.20, gran # 1.7 so I'm back on Ibrance as of tonight, cycle three.

  • Longtermsurvivor
    Longtermsurvivor Member Posts: 738
    edited March 2016

    Hi Naturegirl2,

    Although I haven't wanted to engage Ibrance or Afinitor myself, I ask my oncologists about both periodically.

    Seems that Ibrance has superseded Afinitor in popularity and patients are being started at 75 or 100 mg rather than 125 mg dosage.

    A report from my friend who sees Hope Rugo at UCSF suggests same approach after much experience. I believe my friend is retrying letrazole/femara with 75 mg Ibrance this time around. 125 dropped her counts below acceptable levels last year. My friend is currently NED with many years of bone mets.

    I know, the plural of anecdote isn't data, but sometimes it's the best we can do when making difficult decisions.

    good healing wishes for all, Stephanie

  • AmyQ
    AmyQ Member Posts: 821
    edited March 2016

    Stephanie,

    Interesting to hear your friend is retrying Femara with Ibrance. Femara failed me after 2 1/2 years but I wonder how effective it might be paired with Faslodex or Ibrance. Do you know if a drug has the possibility of working again when combined with another? Of course I'll check with my Onc but I wondered what you know since your friend is in the same boat.

    I've followed your posts since you joined and admire your knowledge and strength. You are a very compassionate woman reaching out and helping others even when you are suffering. Hugs to you.

    Amy

  • Longtermsurvivor
    Longtermsurvivor Member Posts: 738
    edited March 2016

    Hi Amy,

    While I'm uncertain whether an add-on like Ibrance or Afinitor improves the efficacy of Femara or other previously used drug, I'll mention that I'm on my third run with Femara.

    Femara worked on my pleural mets for three years, then failed. I cycled through Aromasin, Faslodex and Estradiol (estrogen!) before trying Femara again. I didn't like how it made me feel, so I stopped and tried testosterone which worked to stabilize things for a while.

    Then I retried Femara a third time and it's keeping my pleural mets under control with minimal unwanted effects, while the liver and abdominal mets progress. As I say, I'd rather die of liver failure than suffocation.

    The thought is the estrogen and testosterone re-sensitized the cancer to anti-hormonal treatment, so I'm getting another go-around.

    I continue the testosterone because I have cachexia, cancer wasting, and it helps with strength and appetite.

    From my personal experience, old drugs can be new again as the cancer morphs.

    Our dear Rosevalley is enjoying another run with Faslodex. Hurray for her and for us who appreciate her participation and wisdom at bco.

    Please let us know how your conversation with onc goes. Always something more to learn.

    The plural of anecdote is not data, but stories. Telling our stories may save our lives and our friends' lives too.

    warm healing regards, Stephanie

  • pajim
    pajim Member Posts: 930
    edited March 2016

    AmyQ, oh yes your spine can collapse. I don't recommend it to anyone. Collapse isn't really the right word -- you get massive compression fractures. 9 hours in the OR, a week in the hospital, no bending or lifting for six months. . . Do the rads. . .

    My onc has said the same thing Stephanie does. With each treatment the cancer mutates to get around it. You try enough different things you might be sensitized to the original one again.

    The reason they try estrogen is that with all the anti-estrogen drugs the cancer cells keep creating more and more estrogen receptors. For some women, when that happens giving estrogen totally overwhelms the cancer cell and it dies. Seems to work for about 30%.

    Stephanie, I'm very interested to hear that the anti-estrogen drugs are working for you and Rosevalley. We should all keep that in mind for later in the game (so to speak).

  • Longtermsurvivor
    Longtermsurvivor Member Posts: 738
    edited March 2016

    I apologize for taking this topic from palbociclib plus fulvestrant...but since it came up, here's the study that influenced my oncologist and me.

    Lower-dose (6 mg Daily) versus High-dose (30 mg Daily) Oral Estradiol Therapy of Hormone-receptor-positive, Aromatase-inhibitor-resistant Advanced Breast Cancer: A Randomized Phase 2 Study

    Low and slow as the local low-riders used to say...I take it easy on the treatments and did estrogen at only 1-2 mg daily, rather than the 6 mg in Matthew Ellis study linked above.

    I do hesitate to suggest my way of coping for anyone else, since there are so many factors at work. Still, I know that the estradiol was effective for me.

    warm wishes, Stephanie

  • Rachel1
    Rachel1 Member Posts: 80
    edited March 2016

    just started Ibrance two weeks ago. Tumor markers went up 50 pts., but alk phos is going down. .?? So confused.


  • lalady1
    lalady1 Member Posts: 530
    edited March 2016

    Hi Rachel1 - my TMs went up for the first 2 rounds of Ibrance/fas and then went down. Are you on 125mg? This board is awesome. Hang in there and stay positive. My onc says fas shots can really kick in around round 4 or 5 (he was part of the Ibrance study). Are you feeling ok otherwise?

    Stephanie - you are such a joy to see here. Thanks for helping navigate this journey. I had no idea that estrogen could help some of us, that nice patch got ripped off me right after being diagnosed ER+/PR+ bc. Pam - fascinating to hear estrogen could overwhelm cancer cells. Estrogen helped my hot flashes so much in the past, but now thanks to arimidex et al, I melt at night. Thanks for sharing.

    For what its worth, I am still working full time on round 3 (lecturing on a panel in April). Walking seems to help, high heels do not.


  • naturegirl2
    naturegirl2 Member Posts: 219
    edited March 2016

    Longtermsurvivor, am I reading correctly that you have survived Stage IV breast cancer for 25 years? If so, quite amazing. Thanks for the live link with regard to Estradiol therapy lose dose vs. high dose. I looked up estradiol side effects as it's mentioned a few times SEs may not be tolerable. Listed scalp hair loss as one of side effects. :( I would be leery in taking hormones as its been known to cause stroke and heart attacks. I can remember many years back,many women took hormone therapy due to hot flashes but that came to a screeching halt due to what I just mentioned.

    I wish a trial study of Ibrance would have been taken with regard to 75mg, & 100mg dosages for effectiveness. Have I missed something here? Does anyone know if that was included in trial? From what I have read, I don't see that. I would think it was done or should have. I really want to stay on the 125 mg regimen but my oncol. is talking a lower dosage. He will decide what to do after I have my next cat scan on April 4th. Ibrance/Faslodex is third line of defense for me. Ibrance was added Jan 1st, 2016 after having Faslodex shots that began in Feb. 2015. Femara was the first med doc. put me on in December 2012 which failed me after 15 months. In March 2014 I was put on Afinitor/Aromasin combo. I had difficulty with Afinitor so my doc. took me off in late Sept. of 2014 but continued on with Aromasin which failed by several months after that. The trials and tribulations we all go through right?

  • jobur
    jobur Member Posts: 494
    edited March 2016

    Stephanie, Thank you so much for relating your experience with "recycling" txs. I agree that the information we share here, while not scientific data, may save or at least lengthen our lives. How are you feeling? Sending warm and healing thoughts your way.

    Pam, Love the thought of cancer cells being killed with estrogen after AI tx! I can just picture those cancer cells gorging on estrogen until they explode. I'm sure it's not quite like that, but it gave me a smile. Take that you greedy buggers!

    Rachel1, Welcome to Ibranceland and hope this will be a very effective tx for you! Please give it some time to work and try to relax a little. It's good to keep an eye on things but does not pay to worry over every blip in our blood work. Hugs to you!

    lalady, I am so impressed with all the ladies here still managing to work! Cudos to you. But what are high heels? (kidding...)

  • AmyQ
    AmyQ Member Posts: 821
    edited March 2016

    I LOVE the image of estrogen overload - it makes sense to me.

    Amy

  • Longtermsurvivor
    Longtermsurvivor Member Posts: 738
    edited March 2016

    I felt so guilty highjacking this topic for another topic, estradiol, that I reactivated an old topic and posted some of my story and some research there:

    https://community.breastcancer.org/forum/8/topics/...

    Big healing hugs, MBC friends, Stephanie

  • naturegirl2
    naturegirl2 Member Posts: 219
    edited March 2016

    Longtermsurvivor, no problem at all. It seems BC people here know you and have followed your participation in various threads, wish you well and enjoy hearing from you, whichever thread you participate in. So don't worry about highjacking this thread; it's really a joy to hear from you. I'm glad I have gotten a chance to meet you here! Anything you have to say I think according to others, is held with high regard! And, if your input from experience can help other BC survivors, well, that is great! I wish you healing my friend!

  • ninaca
    ninaca Member Posts: 232
    edited March 2016

    AmyQ

    I was on 125mg of Ibrance for several cycles, after a few cycles had to wait two weeks in between for my ANC to get high enough to restart. Finally I went on reduced dosage 100 mg and have managed to only have to have one week off, which in the end gives me more Ibrance in my system. Did they say your cellulitis was caused by the Ibrance? My side effects were more manageable on the lower dose but nothing like your hospitalization. I've not heard of that being one of the side effects.


  • AmyQ
    AmyQ Member Posts: 821
    edited March 2016

    Nina, my cellulitis was not caused by Ibrance but my inability to fight infection was. I got an infection in my lymphedema arm, which blew up into cellulitis in a matter of hours. I am having weekly blood draws now and although my WBC and ANC are low, they're not as low as my first go around.

    Amy

  • pajim
    pajim Member Posts: 930
    edited March 2016

    Day 16 of my first cycle and I catch a cold. I assume it's a cold. Sore throat then runny nose and a chest cough. Except for the chest cough a usual cold for me. First one of the winter. Sigh.

    Fast-forward to today, day 20. Fever. Double sigh. I have an e-mail in to the onc's office. Karnak sees a chest x-ray in my not so distant future.

    Don't neutrophils act against bacteria? lymphocytes against viruses? I have plenty of lymphocytes.

  • naturegirl2
    naturegirl2 Member Posts: 219
    edited March 2016

    Nine, has Ibrance/Faslodex combo helped you since you first began the combo at a reduced dosage? Interested to see if the reduced dosage is as effective as protocol dosage.

    jajim, that is what happened to me only after my first 3 pills of Ibrance during the first month and I rarely catch a cold. It is listed as a common side effect on Pfister handout for Ibrance. Hope things get better for you and you can stay on this mix. Also hoping someone can answer your question.