Ibrance (Palbociclib)

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Comments

  • JoynerL
    JoynerL Member Posts: 1,392
    edited September 2017

    Cure-ious, thanks for the clarification and for your insights and vigilance! Always!

    Nkb, I am in total agreement: the more we read, the more familiar we become with the terms and language of this very complicated subject. It can only help.

    Did I read in one of the responses that having had Fulvestrant as a treatment also would preclude you from this particular trial, in addition to the autoimmune issues Janet mentioned? I'm not a candidate yet, anyway, but just trying to be prepared. Ibrance is still working!!


  • PatgMc
    PatgMc Member Posts: 1,312
    edited October 2017

    I celebrate how diifferent we all are. Cure-ious, you would choose to scan more often...Others, like me, not so much. I took Femara after achieving NED with chemo in 2012. When I stopped taking the Femara in 2014, opting out of treatment, my onc and I agreed we wouldn't scan again unless I had symptoms. Interestingly, the symptom that made me get the scan two years later wasn't anything but we found the widespread bone mets then. I'm not sorry I did it that way. Call me crazy.

    Anticipating scans now is hard on my family so I choose to stretch them out. Most of my anxiety comes from dreading bad news for them. I imagine that's also what gets to many of you.

    To those of you who have long suffered from chronic illness that brings you pain, I am so sorry. When I was 17, I was struck by a quote that has always blown me away with its truth:

    "If all our misfortunes were laid in one common heap whence everyone must take an equal portion, most people would be content to take their own and depart." Socrates



  • nkb
    nkb Member Posts: 1,561
    edited September 2017

    Joyner1- yes, for that particular trial, exclusions would include a history of fulvestrant treatment for MBC also you had to have already failed a CDK4/6 inhibitor (and have a life expectancy of at least 3 years!)

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited September 2017

    Great quote, Pat. Gotta love Socrates.

    Prior use of Fulvestrant excludes you from stage 1 of the trial but I wonder if you could use some loophole to sneak into stage 2. Just a thought.

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited September 2017

    A life expectancy of at least three years? Well, since I am an optimist, I would say that wouldn't exclude me. I wonder what my MO would say! He would probably say that he doesn't have a crystal ball, but....Of course, I am on faslodex so wouldn't qualify anyway.

  • tanya_djamila
    tanya_djamila Member Posts: 1,530
    edited September 2017

    I pray that you will get the best results ever!!!!!!!!

    Opening results/Getting results like ripping off a bandaid.


  • nkb
    nkb Member Posts: 1,561
    edited October 2017

    Where are all the crystal balls hiding?

  • PatgMc
    PatgMc Member Posts: 1,312
    edited October 2017

    imageimage

  • nonahope
    nonahope Member Posts: 695
    edited October 2017

    Good morning...

    Such words of wisdom shared! I love it. Whenever I, or my siblings, would complain about anything my dad always told us to "consider ourselves lucky because there's always someone worse off than us"...oh, so true! Sometimes it hard to count those blessings "until" we encounter someone worse off.

    Enjoy your Sunday! I will be heading to my daughter's to watch the Bengals/Browns game. My son-in-law is from Cleveland and this is a yearly rival party....should be fun. I won't be sitting in the "dog pound" section.

  • iwrite
    iwrite Member Posts: 746
    edited October 2017

    Z-Sorry to hear about progression. It's still a shock even when we feel it happening. Hoping for great success in the new treatment plan!! Time with your daughter in a beautiful place willbe a healing gift as well. (())

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited October 2017

    Image result for crystal ball cartoon

    Sorry. I couldn't let go of the crystal balls.

  • nkb
    nkb Member Posts: 1,561
    edited October 2017

    Jaycee49- good to start the day with laughter-thanks

  • PatgMc
    PatgMc Member Posts: 1,312
    edited October 2017

    I love to read stories like this because they reinforce our belief that cures will come for all kinds of cancer, including ours. I have a friend who had 7 malignant melanoma tumors that she could actually feel with her hand, then it metastasized to her brain. She had Gamma Knife and Whole Brain Radiation which took care of the brain part. Then she took Yervoy, one of the first, if not THE first checkpoint Inhibitor. The 7 tumors disappeared and she has been clean with not even a scare for 5 years! (Edit: She's 10 years out from first diagnosis!) There is no ongoing treatment. She went back for a graduate degree at age 42 and is happily married and raising her 3 pre-teen girls whom she was sure would grow up without her. My mother died from malignant melanoma in 1981 when there was no treatment they could offer her. Now, look!

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

  • Kimchee
    Kimchee Member Posts: 94
    edited October 2017

    Thank  you PatgMc you gave me hope tonight

  • PatgMc
    PatgMc Member Posts: 1,312
    edited October 2017

    Kimchee, you have every reason to be hopeful. I remember 23 and a half years ago how sure I was that I would die quickly like my mother. Many of the people with cancer I met then felt the same way. Most of us are still here. We've dropped some body parts along the way, had some scares, but we're not dead! Keep your chin up, my sweet friend.

  • nonahope
    nonahope Member Posts: 695
    edited October 2017

    Good morning...

    Pat G...What an uplifting story! From what I read and hear, Melanoma is such a fast growing cancer! What a fantastic outcome for your friend. These outcomes sure do give us hope....thanks for sharing.

    Hope

  • Lillymillie
    Lillymillie Member Posts: 115
    edited October 2017

    uplifting stories ladies. I'm at my clinic, just had my full body mri and have drank my yucky contrast juice for ct scan. Feeling quite sore around my hips and met sites. Am nearly finished cycle 6. Very worried I have too say. Got a stable result at cycle 3 but this is a tough one. Have to wait a week on results. Keep me in your prayers xx

  • JoynerL
    JoynerL Member Posts: 1,392
    edited October 2017

    Praying for stable or better, for sure, Lillymillie! Good luck! It's awful that you have to wait so long. I have a "stealth" radiologist who reads mine and calls me. Then I have to act surprised with the doctor.

  • Lillymillie
    Lillymillie Member Posts: 115
    edited October 2017

    thanks Joyner, my onc usually get me scanned and I have an evening app with results. The week will feel so long!

  • Lillymillie
    Lillymillie Member Posts: 115
    edited October 2017

    thanks Joyner, my onc usually get me scanned and I have an evening app with results. The week will feel so long!

  • nonahope
    nonahope Member Posts: 695
    edited October 2017

    Lillymillie....Hoping and praying for the best results ever for you! I just completed my 3 month scans Friday. I will see my onco on Thursday --- hopefully, with good results. I have a bit of pain in the area of my mets, but nothing like when I was first diagnosed. Hoping this is a good sign.

    Hope

  • Lillymillie
    Lillymillie Member Posts: 115
    edited October 2017

    thanks nonahope, hope everything goes well for you on Thursday, let us know. I did get stable results after 3rd cycle so I hope you get that or better! Although I hear lots of positive results on this thread I still find Scans so nerve racking!

  • Leapfrog
    Leapfrog Member Posts: 406
    edited October 2017

    Txgatata I'm on Ibrance and my hands could be described the same way you described yours. My finger tips are crepey and every single line on my hands is magnified so that they look totally weird! I used heaps of QV cream on them but it makes no difference except to make them feel more comfortable. I'm also having a lot of trouble with my fingernails. They have deeply scored ridges down them and break half way across before they reach the tips of my fingers. Some of the ridges break open halfway along the nail bed. I keep them as short as I can and, although I don't like using nail polish as it has chemicals in it, I've painted them with Revitanail to try to hold them together. They're so dry and porous that the nail polish just sinks in and there's no evidence to even suggest I'm wearing nail polish...such as shine and gloss, let alone any idea of glamour!!

    A tip that might be useful for anyone who is having this problem of breakage halfway down the nail is to cut open a tea bag, remove the contents and cut a little piece of tea bag paper that is the size of the broken part...paint the nail with nail polish and quickly stick the piece of paper to that section (you might need someone to help you keep it in place because it will move around) then paint over it and the rest of the nail. Make sure the paper doesn't cover the whole nail or the nail polish won't hold it in place. Once dry, paint it several more times. It's a slightly tricky operation but the alternative for me was to have an open nail bed. As I said, I'm not at all keen on using chemicals but currently this is all that's holding three of my fingernails together!

  • JoynerL
    JoynerL Member Posts: 1,392
    edited October 2017

    Is there any news from Z since she left for Japan??

  • JoynerL
    JoynerL Member Posts: 1,392
    edited October 2017

    I went to check on Z on other BC.org sites and found her recent post on this site, which is enormously interesting (and technical), should you care to follow. I am unlikely to have anything to add but intend to observe:

    Topic: Immunotherapy drugs for breast cancer

  • airlinegal
    airlinegal Member Posts: 252
    edited October 2017
    JoynerL...how do you find Z's comments? Leapfrog...there are ridges on my nails and they break easily, but nothing like you describe. That is awful and hope not too painful. Wishing the best for upcoming scans and those waiting for results.
  • JoynerL
    JoynerL Member Posts: 1,392
    edited October 2017

    Airlinegal, you can search by log-in name on Member List and then find posts he/she has made.

  • nonahope
    nonahope Member Posts: 695
    edited October 2017

    Good morning...

    Leapfrog...I have ridges on my nails, but they aren't anything new -- I've always had them. I do keep a clear polish on them.

    JoynerL...I do hope Z checks in with us, as well.

    Wishing all a good day!

    Hope

  • singlemom1
    singlemom1 Member Posts: 260
    edited October 2017

    Does anyone use Glyceine? My naturpathic oncology ND recommended it to me for my MTHFR mutation. Basically this mutation impacts my ability to absorb folate and b12 completely. But I have another mutation if I take folate and b12, I get very nervous and "speedy" because the other mutation causes me not to be able to release stress hormones well. In naturpathic circles it is believed that the mthfr mutation is a risk factor for cancer and inflammation ( among other things,). The naturpathic prescribed magnesium and Glyceine and I do find them to be helpful and they do take the " edge off". My Mo is not supportive of natural supplements so she just recommends not to take any. Wondering if anyone knows more about Glyceine and if anyone has taken it with Ibrance?


  • jaycee49
    jaycee49 Member Posts: 1,264
    edited October 2017

    airlinegal, you can also just click her name (or anyone's) to find her posts. She posted in Kandy's thread last night. Go find that and click her name in that bold form. Scroll down and all her posts will be listed.