Ibrance (Palbociclib)
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I started my 2nd week of I/L yesterday. As some of you know, this is my second go-a-round with this combo. No issues at all, so far. I have a hard time with water, but I do better drinking the small 8 oz. bottles throughout the day and evening. For some reason, those 16 oz bottles intimidate me. One of my onco nurses suggested to take a few gulps during every commercial when I'm watching TV. You'd be surprised how well that works!
Hope
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MO-Beth did say in her first post that she was not taking Ibrance. She is not stage IV. We PM'd. She feels terrible about what happened. She was summarily admonished by the mods. She got to the stage IV forum by accident, searching for Ibrance for a friend/relative. Everyone with BC deserves to be supported, not criticized for making an innocent mistake.
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Thanks Ciaci, will work on drinking more water.
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Had she reached out to me privately to explain, I might have felt the same Jaycee. But she didnt, and in fact, in her apology said she wasn’t even going to try to explain. Sorry but that says a lot
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Thank you Jaycee49 for following up on that post of MO-Beth's. I can't imagine she ever wanted to make a bunch of people dealing with stage IV BC feel bad about their treatment choices. I have to say I Have spent plenty of time complaining about the price of treatment and ranting about evil BIG PHARMA. But, the fact is that it's what's currently keeping me alive and what has been keeping my cancer at bay for years. It's a love/hate thing really. I love living and I hate having to take pills upon pills to make sure I can keep on living. But, for now, i will happily dance with Ibrance until a better dance partner comes along. I'm stll waiting on NED to show up!
Missy
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Thanks for the support, georgiabirdgirl. MO-Beth was already embarrassed. I saw no reason to embarrass her further. Maybe she didn't try to explain because it would look like she was making excuses.
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I was offended. She was embarrassed, upset etc etc etc. She apologized. But if she were so embarrassed and upset, she might have made the effort to talk to me about it instead of playing the victim. It’s that simple. Last I checked I have the right to my opinion (which I will say again wasn’t the only person who felt that way, the attempts to make her the victim shows the good reasoning of those who didn’t post on the thread).
This is why I don’t stay on these boards much.
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Nonahope, so glad to have you back. The commercial drinking would not work for me because I am usually watching Netflix. I don't even watch recorded stuff any more because I am too lazy to skip over the commercials. (And you never know when Julie or Alice might show up.) When I read, though (and I read a lot), I take a drink every time I turn a page. That works for me.
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Leapfrog--the red spots are odd. Do yours itch? Mine does. ONC said to put hydrocortisone on it, but it hasn't gone a way.
All--I get very dry in the nose and eyes. I definitely need to drink more water!
Thanks for all the great support and posts!
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HALLELUJAH and PRAISE THE LORD! ~NEAD!! ~ I met with my onc yesterday, who is usually cynical by nature, and he was wreathed in smiles as he reported that my PET scan showed no activity! Ibrance, Faslodex, and Xgeva are doing their job. As he put it, "We know that there are cancer cells lurking there, but the equipment can't see them!" He went on further to say that every month new advances are being made in breast cancer (he described it as the "most studied form of cancer" there is) and that he fully expects that when mine ultimately progresses, there will be new options available. He told me that were I to have come into his office today with a new diagnosis of MBC, he would have put me on a newer regimen than the one (I/F/G) I'm on now. He was surprised and pleased, nodding his head in agreement, when I reeled off some of the newer drugs now available. I asked him about Keytruda, and he said that it is being used in multiple other cancers right now but not much in BC because other options are, so far, working well enough that doctors don't want to take the chance of making the switch in their patients who are responding well to an other option. He thinks that that will change as new combinations with Keytruda are found to be of great benefit in BC. All very interesting and encouraging stuff.
I took him the article on the RB1 gene mutations (I posted it on the 18th) and the theory that adding a " PI3K inhibitor to combined CDK 4/6 inhibitor and hormone treatment could prevent or delay CDK 4/6 inhibitor resistance" and he said that that was a perfect example of what he meant was going on in development. I am bouyed!
Hugs to all-
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Joyner, HALLELUJAH indeed !! that is just fantastic !! I too am terrifically buoyed and encouraged by your news !!! YAYAYAYAYAYAY !! Congratulations !!
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Joyner great news!!!
Good morning all. I’ve been reading and scrolling.
I wish the best and NEAD for everone’s Upcoming scans.
Tanya
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Joyner - awesome news! Always a great start to the day with hearing that!! Enjoy hump day😉
Wishing everyone a super day
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Joyner, Congratulations for the wanderful news!!! I'll be happy dancing with my baby grandson all day for you! Thank you for sharing ! There is hope that one day the Monster will be destroyed!
Love , love, a lot of love sending to all. Elena
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Netta. - happy to hear you feel better and the blood test is good. My last one was normal, except ,I think MCH and MCV, which were getting a little bit higher every month . And the RBC stay constantly lower. I asked the MO to decrease Ibrance to 75 and i was surprised he agreed.
Everybody have a wanderful day
Hugs and prayers. Elena
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JoynerL - congratulations!! Woo-hoo! Celebrating with you!
My biopsy/kyphoplasty has been approved for tomorrow morning - the nurse called and asked me what I did; she said someone else with the same insurance company has been battling for MONTHS to have it approved. I have no idea, I didn't do anything, but I'm awfully glad it was approved so quickly, and I'm praying for the person who is still battling.
My husband has a horrid cold, and he's a man so he thinks he's dying - so I'm trying to figure out who I can call to drive me. So many people have offered to help in any way we need, but I hate to impose, especially since I'm going to have rads first - at 7:45 AM!!
Best wishes to everyone - have a great day!
Kathy
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WOOHOO joyner. I'm seeing MO today and I'm asking her why I've never been told I was NEAD. No uptake ever shows up on my PET scans but sill, I never hear NEAD.
Great news, great, great news.
I got one of those recorded calls to verify my MO appointment earlier in the week. That computer voice tried to say my new MO's name, a very long, many syllable Indian name. Butchered it but very entertaining.
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Great news Joyner!!! So glad to hear it
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Joyner, WOOHOO! So happy to hear that you are NEAD. I am joining in that happy dance for you. May you have more results just like that for years to come!
Blueshine, My MVC and MCH are always creeping up, too. RDW is usually elevated, and RBC is always low. I think that is common while on Ibrance. I still feel great, my scans aren't showing anything alarming, and my MO isn't concerned, so I figure that those blood tests just are what they are.
Kathy, Good luck with your biopsy/kyphoplasty. Don't worry about imposing on people who have offered to help. I am sure they would be happy to drive you. You might be surprised how good people feel when they are given a chance to do something for you. People really want to help, but sometimes they just don't know how.
Hugs and prayers from, Lynne
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NED, wow joynerL, so good to hear! sounds like your onc is well-informed of the latest treatments. good for you. and like Tanya said NED for all!!!
pecularigirl, keep us updated on the kyphplasty, how is your spine? mine is a wreck. can't move this way or that way without feeling it is thrown out of alignment. Best of luck.
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JOYNER- What an amazing result! I am so happy for you and so glad that you shared your good news. It's not only uplifting to hear others in this group doing so well, but also to hear that your MO has such hope for future treatment options. Congratulations!
PeculiarGirl- It's so hard to ask for help, but I'm sure there are plenty of people who would be relieved to finally have some way to actually help. It's what most people want, but they just don't know what to do to help. Good luck tomorrow!
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Lynne,50s, I am relieved to hear that is not that rear to have larger red blood cells. Doyou think is a good idea to decrease Ibrance? I know we are not doctors, but actually we all are guessing. If my blood test is the same I could ask him go back to 100 . Sometimes I am chicken about change.
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Janet...I do the same thing when I read...turn a page, take a few gulps of water. I read a lot...that helps!
Lynn....Wonderful news!! Your onco sounds like a gem.
Kathy...Good luck tomorrow. Will be there in spirit to support you.
I hate to impose on people, too. But, with this horrible neuropathy, I've had no choice. I call on family members, so it's a bit easier than asking friends.
Hope
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Blueshine, There are many people here who are doing very well on 75 mg, so I don't think there is any reason to worry about being on that dosage. It could very well improve your blood tests. Maybe you will even feel more energetic. Perhaps you will posting about training for the marathon a year from now! Lol. Seriously, your MO would not have agreed to lower your dosage if he had reservations about its effectiveness. As far as being chicken about change is concerned, I am right there with you. Change can be scary, but I have found that most change is good. You will still be monitored, so just go with it and enjoy life.
Hugs and prayers from, Lynne
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Janet, interesting that you should ask about my onc's use of the term "NEAD". In fact, he did NOT, until I prompted him. I had a list of questions for him (always do), and among them was what was considered "NEAD", since I see it on the site from happy time to time. He smiled and said that he really doesn't "use that term", but he went on to say, "But, that's what you are". I suspect, and I don't want to put words into his mouth, that he fears that those who don't pay proper attention might mistake his saying that for his meaning that they were cured. SO....maybe your onc makes a practice of not using that term, either. It would all make sense to me.
Yes, this onc is a gem, and the only way I got him was through a referral from my surgeon, who happens to be his personal friend. WHEW. He is also very candid and never sugar-coats, which I much appreciate. I want the truth. Unvarnished.
Kathy, good luck tomorrow. I'm sure that your friends DO want to help. I understand your struggling with it, though. Call on 'em!
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That is great to hear Joyner. Thanks for sharing that with us.
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Lynn (Joyner), doing a happy dance for your fantastic results - long may you dance with gorgeous NED (or NEAD, if you will).
Elena (Blueshine), my RBC's and associated values (MCV, MCH, RDW) are doing exactly the same thing. I asked my sister who's a physician and she explained that this is exactly what she would want to see in a patient in our situation. If the hemoglobin is relatively stable, the other values are just a signal that the body is adapting to its "new normal" under the marrow stress induced by Ibrance. A few RBC's don't get to "retire" as early as they normally would, and a few get sent to work sooner than they normally would, and this introduces some size variation and abnormal concentrations, but the job still gets done.
Kathy (peculiargirl), good luck with the procedure tomorrow - don't be shy asking for help, people usually like to feel useful and kind.
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joynerL, as you are NED, does the treatment change or remain the same? Happy for you !
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My MO was happy to agree that I am NEAD although when I Googled the term I got this:
https://en.wikipedia.org/wiki/Nead
Video game system, some kind of attack disorder, and a place in Indiana.
Googling NED gets a rock band. Interesting rock band made up of doctors.
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Janet, I am glad it's official now. You are NEAD! WOOHOO! I do like that rock band definition. It is just a strong statement and implies that you rock, right?
Lynne
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