Faslodex + Pablociclib(Ibrance) treatment combination -

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Comments

  • zarovka
    zarovka Member Posts: 2,959
    edited March 2018

    JoynerL - that is odd. It developed on Faslodex? My thumbnails have always looked like that.

    >Z<

  • azs40
    azs40 Member Posts: 45
    edited March 2018

    Ladies.

    I'm on this combo - have been since this past December, so early days. Does anyone else have achy thighs, hips, butt on their off Ibrance week. I've had it before - but this cycle has been terrible. It's a toothache type of pain - lingers and gnaws. Hard to sleep, etc.

    If you experience this, is there anything I can do to alleviate? Does anyone know what it's from? Faslodex? Xgeva? Off-week? Ibrance?

    Thanks.

  • susaninsf
    susaninsf Member Posts: 1,099
    edited March 2018

    I was having joint pain that kept me up at night. My MO gave me prescription for Naproxen. You can also get OTC Aleve. The only difference is that the prescription dosage is higher so you only have to take one a day. Completely wiped out the pain. It is an anti-inflammatory. Inflammation could be what's causing your achy thighs, hips and butt.

    Hugs, Susan

  • JoynerL
    JoynerL Member Posts: 1,392
    edited March 2018

    Z, the nail ridges appear to have developed gradually over the past several months. I've been on Ibrance/Faslodex + Xgeva for 14 mo.

  • pajim
    pajim Member Posts: 930
    edited March 2018

    I have nail ridges but I thought they were due to Xeloda. I was on Fas for 4 years and Ibrance for the least year of it. Possible that it was due to those. I simply don't remember when I noticed them.

  • azs40
    azs40 Member Posts: 45
    edited March 2018

    Susan....do you happen to know the name of the med?

  • susaninsf
    susaninsf Member Posts: 1,099
    edited March 2018

    azs40,

    The joint pain med? It's in my post above. I also sent you a PM.

    Naproxen Sodium. Sold as Aleve OTC.

    Hugs, Susan

  • LaurenH
    LaurenH Member Posts: 382
    edited March 2018

    hi - I am a bit new here and currently 15 days into Faslodex/Ibrance for a single bone met in my rib. The only side effect I have had is a runny but oddly very dry nose and almost non-stop light bleeding on both sides. My platelets we’re normal and of last wed and this started only a few days after starting both drugs. Anyone else with this symptom or is it unrelated maybe

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited March 2018

    Lauren,

    I am pretty new like you. I started Fas/Ibrance in January. I have the sniffly nose but no nosebleeds.

    I hope this gets better for you. Is your house air very dry?


    Warmly,

    V

  • LaurenH
    LaurenH Member Posts: 382
    edited March 2018

    hi gum doctor and thanks for your response. I've taken steps to add humidity to the air in my house and it has gotten a bit better but I was also on my 7 days off at the same time. I’m 3 days into cycle 2 so we’ll see if it returns

  • Liwi
    Liwi Member Posts: 249
    edited March 2018

    I’ve gotten runny nose and sometimes sinus congestion over the last several cycles. First few times I thought I was getting a cold but never really developed some to my normal cold progressive series of symptoms, and this happening every cycle so at this point I think it is likely reaction to Ibrance.

    I ha similar problems when I went through chemo during my initial diagnosis.

  • LindaF
    LindaF Member Posts: 9
    edited March 2018

    Hello, I was caught off-guard with these nasal complaints. I have them and never gave it another thought, so it is interesting to note that these congestion symptoms might be related to the Ibrance or fluvestrant or denasumab? I had just resolved to use my Neti pot each morning and see if things cleared up. I might try it anyway.

    I have been on the Ibrance/Faslodex/Xgeva regimen since 13 October 2017, about 10 days after my malignant pleural effusion was diagnosed. I had a PleurX catheter placed in my thorax and my husband drains me at home. It has made such a difference for me, I can breathe. I have not had any ill effects from the pill-injections combo other than sore hips. But after one nurse did a great job of placing the injections in the right spots, I went and had the needle marks tattooed onto my derrière and have had no real discomfort from the injections since! I have been blessed, I don't seem to be troubled by any side effects so far. I am hoping this drug combo will keep the cancer at bay for many years.

    I wish this for you all as well

    Linda

  • holmes13
    holmes13 Member Posts: 192
    edited March 2018

    I am on day 5 of my second round of Ibrance and Faslodex and wake up every morning to a dry nose and scratchy throat. As soon as I get something to drink, take my flonase and get moving I'm ok. I due have some joint pains on occasion that I have been able to take naproxen; but I have to watch my platelet counts when taking this.

    Linda I was diagnosed with Plueral effusion as well. I have only had my lungs drained one time. It started acting up again right after my first treatment at the end of February but I found that if you breathe in deep and hold your breath as long as you can and cough (do this ten times) it seemed to help. I also kept my inhaler around because it would be hard to breath for a short time afterwards. I don't know if this was a coincedence or if it really worked but "knock on wood" I was able to divert getting the lung drained again.

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited April 2018

    Quick question. I just finished Ibrance cycle 8 along with Faslodex. As of tomorrow Ibrance will be covered in British Columbia. So far I hear that it is only Line 1 which is to my knowledge, is Ibrance and Letrozole. Do any of you know or understand what Line 1 and 2 mean?

  • pajim
    pajim Member Posts: 930
    edited April 2018

    marianelizabeth, line 1 refers to the first treatment given. Second line is the treatment you start when the first one fails.

    Today, first-line treatment for MBC if you are ER+ is palbociclib (or equivalent) and letrozole (or equivalent). Faslodex is normally second-line therapy. You take it when letrozole stops working. Third-line is A/A.

    You can take Ibrance with Faslodex (I did for a year after it became available), particularly if you haven't had palbo yet. In Canada it may not be approved for that use. It is approved in the United States.

    In your case they started you on Faslodex because you were already on the first-line treatment when the mets were discovered. Ergo anastrozole is considered to have "failed" you.

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited April 2018

    pajim, I actually do understand it but it seems that some us up here do not and there seems to be misunderstanding especially now that it Line 1 will be covered in British Columbia. Here is the link to the second protocol that came out at the end of the week~~nice of them to release before a long weekend!

    http://www.bccancer.bc.ca/chemotherapy-protocols-s...

    This was the first release I saw and it covers the drugs as of April 1 that our cancer agency covers (or not). http://www.bccancer.bc.ca/systemic-therapy-site/Do...

    This one is the most concerning to me. I had a quick look googling these drugs but know nothing really. http://www.bccancer.bc.ca/chemotherapy-protocols-s...

    So I am covered by our insurance for my Ibrance and Faslodex but many are not. It is possible too I suppose that our insurance will see this and no want to cover me. Just supposition but with insurance one never knows.

    Marisn

  • MyMiracle13
    MyMiracle13 Member Posts: 25
    edited April 2018

    Hello. I am a newbie here and will just start with the Ibrance/Faslodex combo. I will be starting the Palbociclib first then follow it up with the Faslodex after 2 weeks. Hope the SEs won't be too bad for me as I am going on a pilgrimage to Europe mid June

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited April 2018

    welcome...

    I am pretty much a newbie too. Just completed 3rd cycle of Ibrance/Faslodex. I dreaded side effects too but they could be much much worse. My bloodcounts are actually lower than when I had chemo for stage III. So fatigue is my biggest issue.

    Remember to focus on one day at a time, not all of it. Visit us here as much as you want or need to. We get it. This is a phenomenal group of people here to support you and each other.

    Warmly, V

  • Hope991
    Hope991 Member Posts: 25
    edited May 2018

    Just had my first faslodex injections two weeks ago. Due now for the second one. I have on one side at the injection site a itchy bruised feeling bump. it is not swollen. hurts a little when pressed.

    Has anyone had something similar? can we still do another injection or need to wait? Please share your experience. thanks.

  • ninetwelve
    ninetwelve Member Posts: 328
    edited May 2018

    Bumping this thread to note that after being on Faslodex/Ibrance combo for almost a year, I am currently planning to give up the Faslodex. Joint problems (weakness, inflexibility, unreliability) are my bane.

    I refused the Faslodex shot last month, and I feel like I have my wrists and ankles back, just after a few weeks. I have no life partner or children, so I am not hanging on for other people, and I am prioritizing quality of life over quantity. When I see my oncologist, in two weeks, I'll discuss it with him. If he gives me useful advice, I'll come back and report it.

  • Sirena_Gorda
    Sirena_Gorda Member Posts: 3
    edited June 2018

    Hello to all. This is my first post since being diagnosed with mets to the left supraclavicular lymph node, mediastinal area, and a few left axillary nodes. I started Faslodex and Ibrance on April 27, 2018. I have had a few expected SEs, and thought I had a rash from Ibrance after 2 weeks. I sent photos of my forearms to my MO, and I think she was a little surprised to see the flat, red eruptions all over my forearms. She referred me to a dermatologist on the support team, who did a punch biopsy. The results indicated that what I have is Lichen Planus. It is also on my scalp, but not in my mouth. We cannot find any info linking Lichen Planus to either drug. Have any of you had a similar experience? Maybe it's a coincidence, but it's not a condition I have ever had in the past.

    Thanks for being here.

  • meadows4
    meadows4 Member Posts: 42
    edited June 2018

    I had a somewhat similar reaction which I attributed to too much sun. Once I avoided the sun or covered up while out in the sun , the skin problem resolved itself

    ,

  • Sirena_Gorda
    Sirena_Gorda Member Posts: 3
    edited June 2018

    Thank you for that info, meadows4. I was thinking that this all started when I spent the day at the lake in the sun. I have been avoiding the sun since then.

  • Sirena_Gorda
    Sirena_Gorda Member Posts: 3
    edited June 2018
    Thank you for that info, meadows4. I was thinking that this all started when I spent the day at the lake in the sun. I have been avoiding the sun since all of this started.
  • LaurenH
    LaurenH Member Posts: 382
    edited July 2018

    hi Sirena - I got a rash in various places periodically through my first few cycles of ibrance. My MO said it was Ibrance related. I think I only got it during the first 3 cycles and not since then

  • pajim
    pajim Member Posts: 930
    edited August 2018

    I'm baaaackk! Or I will be starting tomorrow. After 14 months on Xeloda and one month on nothing I start Faslodex plus Verzenio tomorrow. I'm told it will be more or less like Fas & Ibrance which I was on for a year.

    The odds that this works are less than 50% but it beats moving on to iv chemo. Re-trials of hormonal treatment have been known to work for a while so that is what I'm hoping for. Six months would be excellent.

  • cure-ious
    cure-ious Member Posts: 2,925
    edited August 2018

    Palm- yeah!!! I think you are so smart, go for it and mix it up.

    Ninetwelve- I hear you on the joint creakiness!! However no point taking Ibrance if you drop the Faslodex. One option is to move to Abemaciclib/Verzenio, which can work on its own. Even better is the trial where they combine it with Keytruda (immunotherapy) and it seems to be working! Waiting on the updated numbers for those trials..

  • jobur
    jobur Member Posts: 494
    edited September 2018

    Pajim~

    Welcome back! I was thinking of you this am and wondering how you were doing on chemo, but here you are and I am so glad to see you were offered another treatment option. May you be one of the "less than 50%" for whom this works. You are an exceptional lady, so it only seems right that those exceptional odds should work in your favor.

    Jo

  • pajim
    pajim Member Posts: 930
    edited September 2018

    Well thanks so much! I've had the loading doses of Faslodex. My butt sort of remembers this -- the lumps came back right away. No hot flashes so far (yippee!!)

    I'm having some trouble adjusting to the Verzenio but I'm hoping another couple of weeks will smooth it out. I'm on plan C for dealing with the big D.

    Crossing my fingers on efficacy. Monday they do tumor markers for the first time -- we'll see if any effect.

  • jobur
    jobur Member Posts: 494
    edited September 2018

    Pajim~  Good luck on the Verzenio, hopefully it will get better as your body adjusts. You might want to try switching to the ventrogluteal site for your injections. I decided to switch sites earlier this year when my nurse started having trouble pushing the shots into the dorsogluteal muscle. About the same time she starting having trouble, I noticed less sore butt muscle feeling after the shots, making me wonder if the injections were still effective. My guess is that I had built up too much scar tissue in that area. I was pretty anxious those first couple of shots in the new location, but it proved to be a good change. And no lumps so far!