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Ibrance (Palbociclib)

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  • denny10
    denny10 Member Posts: 421
    edited February 2020

    jaycee49, thanks for your reply. Sorry to hear you have been troubled with UTI's, but you seem to have a handle on that now. Have a happy holiday from Ibrance and good luck with your one woman experiment. Now I have to decide if I have the courage to take a month off Ibrance!?!

  • BevJen
    BevJen Member Posts: 2,341
    edited February 2020

    Regarding taking time off from Ibrance -- I have a week long trip coming up and my MO actually suggested holding the Ibrance during that time period -- so I will start my next cycle, take Ibrance for a week, then take off the week that I am traveling, and then re-start upon my return. All in all, I will take pills about 16 days of my next cycle instead of 21. MO suggested it and is supportive of it. My scans suggest that I am stable right now, so I'm going for it. I am still at a 125 mg dose.

  • intolight
    intolight Member Posts: 2,324
    edited February 2020

    BevJen, my MO has recommended the same thing at times. Enjoy your trip!

  • cure-ious
    cure-ious Member Posts: 2,854
    edited February 2020

    Here is an interesting discussion about what to do on progression after Ibrance-AI, and what are the significance of ESR1 mutations

    Hope Rugo (UCSF) apparently just goes to Faslodex alone, but the others point out studies showing that 25-36% of patients will still respond at least to Abemaciclib.

    Notably and not surprisingly, they mention that the ones who continued to respond to a CDK4,6 inhibitor after progression on Ibrance-Letrozole were the ones who responded best in the first place.

    It is disappointing that there is not more clarity on what to do after I-F, given that Ibrance was FDA approved five years ago..

    https://www.onclive.com/peer-exchange/advanced-bre...


  • sondraf
    sondraf Member Posts: 1,666
    edited February 2020

    Dumb question, but what is the reasoning with taking the week off with travel? Is it for fatigue or side effects or low white cells?

  • JACK5IE
    JACK5IE Member Posts: 654
    edited February 2020

    JodyJ...I have tingling, numbness as well. I'm assuming it's one of the three cancer drugs I'm on.

  • intolight
    intolight Member Posts: 2,324
    edited February 2020

    Sondra, I am not an expert, but for me taking a week off helps mainly with fatigue and nausea so I am able to do more. Letrazole has side effects on its own but it also keeps working alone without Ibrance and for me those SEs are minimal.

  • holmes13
    holmes13 Member Posts: 192
    edited February 2020

    Hi everyone! I usually just read but I was wondering if anyone else’s hair is changing on them? my hair was straight and now it seems to be getting curlier everyday

  • candy-678
    candy-678 Member Posts: 4,166
    edited February 2020

    Cure-ious- I think I read a post from you before about people still responding to Ibrance after progression. Something like 30% will keep responding for 6 months or more, 30% for up to 6 months, and 30% will not respond to Ibrance as second line. So I am thinking, how about moving to Ibrance and Faslodex after Ibrance/ Letrozole quits working. At least try to see if Ibrance will still work. If progression, then move away from Ibrance. But get as much time out of the drug that I can.

    And what does the research say about the other CDK 4/6 inhibitors---Kisquali or Verzenio? Can we move from Ibrance to another CDK 4/6 inhibitor? Don't they work a little differently?

    I agree that there should be an established 2nd line after progression on Ibrance. Seems so iffy on what we use next.

  • BevJen
    BevJen Member Posts: 2,341
    edited February 2020

    For me, the reasoning behind taking time off from Ibrance for travel is the fatigue. The fatigue, I would guess, is caused by the depressed blood cell counts, and taking time off is the same type of a thing as taking off a week after 21 days of the drug. Makes sense to me.

    Candy, makes sense to me to switch to faslodex along with the Ibrance. I do not have the ESR mutation, but after 13 years on letrozole, it just didn't work for me any more. Faslodex, though, works differently, and that's why I am able to continue to use it along with Ibrance. (Also, for me, faslodex seems so much easier on my body than did letrozole.)

    I've also read that Kisqali and Verzenio do work a little bit differently from Ibrance -- and think that I read that some recommend switching to Verzenio if Ibrance fails.

  • candy-678
    candy-678 Member Posts: 4,166
    edited February 2020

    BevJen- How do we test for ESR mutation? I had F1 study done at diagnosis-- 2 1/2 years ago-- and the F1 report doesn't say anything about ESR mutation. But do we retest at progression since last test was over 2 years ago?

  • BevJen
    BevJen Member Posts: 2,341
    edited February 2020

    Candy,

    I don't know if there is a separate test for ESR mutation -- but I know it didn't show up in my Foundation One report. Perhaps Cure-ious will respond about this? Or someone else?

    I think that if someone has progression, and if it's something that can be biopsied, then they can ask for another F1 report to see if there are changes. Heck, now I think you can even just do the blood test version from F1 or Gardant?

  • karenfizedbo15
    karenfizedbo15 Member Posts: 719
    edited February 2020

    Hi Jodi, can't obviously comment on whether your leg tingle is connected with your spinal compression. However can confirm itchy lower legs is def a thing. It comes and goes and is usually worse in bed at night.

    As to taking time off Ibrance, remember some of us are taking an extra week off in every cycle on a 75mg dose, just to get our counts up enough for the next cycle. It would indeed be helpful if research was done on ' how low can you go' and still be effective!

    Oh and Holmes, hair also def can change, mine is now straight and a good bit finer. Used to be curly and thick!

  • Penny-78
    Penny-78 Member Posts: 271
    edited February 2020

    Candy — interesting questions. I do think that abemaciclib mentionedin the article is indeed another CDK 4/6 inhibitor. Sounds like there is some sense it can be used in the next line. MO had mentioned that as well.

  • lakewoman
    lakewoman Member Posts: 221
    edited February 2020

    Tanya a big shout out thanks to to you!! Buck mounted on our wall!!! Looking at him as I type!!!

    Holmes13..Had great body to my hair before I/L..now curly.!!.Hair dresser uses small straightener I bought, but not clever enough to use it on my short hair ,so gave it to her..She's good ..did it today!! When I do my own hair I wash it then put headband on it wet .hair not headband lol!!!and sometimes tight tuque ..tuke my spelling.. over headband ..till it mostly dries...Then use hairdryer..If it's still curly usually one side much worse.. I wear headband during the day sometimes..look like Rosie the Riviter..for youngins here..Google that !!

  • lakewoman
    lakewoman Member Posts: 221
    edited February 2020

    How can I put picture here?? Not buck..but me as octogenarian !!!Thanks Tanya lol!!joking!

  • jodyj
    jodyj Member Posts: 55
    edited February 2020

    Thanks to all who responded to my question about leg tingling and skin sensitivity. It's been so pronounced today. Karen, I wonder if the itchiness you mention is the same thing. Mine is like intense goosebumps, or pins and needles, on top of a sunburn. But maybe it's all the same phenomenon. The skin discomfort is also on my lower back.

    Jaycee, I did not know that letrozole could cause neuropathy. Thanks for that info.

    Jackie, it looks like Ibrance is the one treatment we have in common. I'm hoping this lets up!

  • tanya_djamila
    tanya_djamila Member Posts: 1,528
    edited February 2020

    Lakewoman when you’re typing there’s an icon top right that looks like twomountains. Select that and it will take you to Insert image. I’m assuming your pic is in your computer or phone choose browse or you can take the picture if you’re in the phone. Hope that helps I’d love to see the big guy.

    Tanya

  • cure-ious
    cure-ious Member Posts: 2,854
    edited February 2020

    BevJen, Interesting that you find Faslodex easier!! Candy, One other way, although they don't offer this as an option, would be to just start adding Faslodex to the Ibrance-Femara upon progression. I read awhile ago about a trial where they were having at least six months overlap between Femara and Faslodex transition, with the rationale that Faslodex is not able to instantly degrade all of the estrogen receptor in your body, that takes a long time, and in the meantime, in most cases, the femara is still working to keep most of the mets in check (just not the ones progressing). So the idea was to stay on both drugs as you transition- In addition, there are some old trials that they finally got survival numbers on, and it showed a survival advantage to taking both Faslodex and Femara (those trials were all done in the days before Ibrance). Assuming that would be true in the Plus-Ibrance condition, then it could be we still are dropping Femara too soon. I guess insurances might not pay for both anti-estrogen drugs, but its possible we could all be doing even better by just adding-on Faslodex at first progression.

    Also, of course Abemaciclib is a different drug, it hits more kinases plus it is also a stronger inhibitor of CDK4,6. One of those kinase targets is CDK2, which often becomes more active when cancers become resistant, and inhibiting the CDK2 can make the cancer become more dependent again on the CDK4,6 kinases. So trying Abemaciclib after Ibrance makes a lot of sense.

  • BevJen
    BevJen Member Posts: 2,341
    edited February 2020

    Cure-ious,

    Yes, faslodex for me is much easier. First, I don't mind the shots -- so there's that. And it's easier because I don't have to pop another pill. But also on my body, I had all sorts of aches and pains on letrozole, plus tendonitis in both feet, knee pain, sleep disruption, etc. I started faslodex about a month or 6 weeks before I started Ibrance, and I immediately noticed a difference from letrozole's side effects. I just think that after 13 years on letrozole as a single treatment, my body had had it.

  • Penny-78
    Penny-78 Member Posts: 271
    edited February 2020

    Fascinating! Thanks Cure-ious!

    Hugs,

    Penny

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900
    edited February 2020

    Taking a break from Ibrance, what are the DR's reasons for giving an OK or recommending. I just finished cycle 5 along with 7 days off, and start cycle 6 tomorrow. My WBCs and RBCs are low, but considered within range for someone taking Ibrance. My oncologist was very concerned about my missing any days due to recent surgery, and wanted me to resume as soon as possible. As it turns out I only missed one day. Is anyone else taking it with Arimidex ? Tumor did shrink (Sept 2019 Pet compared to Jan 2020 CT. But I've always had questions about estrogen, which drug is best?

  • GinnyO2
    GinnyO2 Member Posts: 115
    edited February 2020

    Hi everyone,

    Question :
    My AST has been trending upward since I started Ibrance 8 cycles ago and now it’s moved slightly into the “ high” zone. It went up 4 points the last time it was checked.
    Onc waiting to see what the CT shows on 3/12 and he said that before he got the new report showing it going into the high zone, it had increased but 4 points. 😏

    Has anyone else had this same issue and if so where did that take you?
    Any info would be appreciated.


  • karenfizedbo15
    karenfizedbo15 Member Posts: 719
    edited February 2020

    Ginny- what’s AST? Some of the acronyms used in different countries vary

  • ciaci
    ciaci Member Posts: 315
    edited February 2020

    Karen, AST is Aspartate Aminotransferase, a liver enzyme. They check it to monitor damage to the liver. It's my understanding that it's not the cancer, but the medications, that cause a rise in AST.

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited February 2020

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  • lakewoman
    lakewoman Member Posts: 221
    edited February 2020
    image
  • lakewoman
    lakewoman Member Posts: 221
    edited February 2020

    Thanks Tanya...good instructions!!

  • chico
    chico Member Posts: 197
    edited February 2020

    Sorry Lakewoman but I am deeply upset to see a picture of a beautiful animal killed for pleasure on a site where I for one am fighting to stay alive

  • lakewoman
    lakewoman Member Posts: 221
    edited February 2020
    image