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Ibrance (Palbociclib)

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Comments

  • sonyarizzo
    sonyarizzo Member Posts: 69
    edited March 2016

    Amy thank you! I need to forget about cancer for awhile. I am also waiting on TM results. I have a hard time not knowing so in sure I will look at the patient portal to see them. If it's good news it will be great. If it's bad news..it will be scared about it for a day or so and then I will put it out of my mind. Wish I weren't such a need to know person!

    We are going for 9 nights. Starts in Ft. Lauderdale then to Haiti, Puerto Rico, st. Thomas, st. Marteen, and st. Kitts.

    Need to find the chapel as soon as we get on board so I can have a conversation with God and pray for Him to keep me healthy

  • AmyQ
    AmyQ Member Posts: 821
    edited March 2016

    how lovely Sonya. Puerto Rico has beautiful churches so if you get off the ship, go to old San Juan. You will be dazzled. Light a candle for us on BCO.

    XO

    Amy

  • Kaption
    Kaption Member Posts: 2,934
    edited March 2016

    Sonya, I know your cruise will be wonderful and relaxing. Soak up that sun and sea air! Breathe!

  • sonyarizzo
    sonyarizzo Member Posts: 69
    edited March 2016

    Thank you ladies. I have been to old San Juan. It is beautiful and I will for sure find a church and say a prayer for us all. 🙏🙏🙏

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited March 2016

    Sonya, please don't stress about getting sick on your trip. Of course we have to be careful, but I remember reading that the oncs are not seeing as much illness as might be expected with Ibrance. It's like other types of blood cells work harder to make up for the low ones, I think. In any case, worry will not help you, as you know. Take a vacation from cancer. You have a lovely trip planned! Relax and enjoy. Tune in to your senses and be there. It's going to be great! (And I will try to follow my own advice later this year. I'm planning a trip now.)

  • momallthetime
    momallthetime Member Posts: 1,375
    edited March 2016

    Sonyar hey you gonna have a blast! What beautiful places you are gonna be at. Enjoy every minute. Great idea in letting the doc know about you. Smile and try to relax. Btw, if Onco gets your results back and wants to let you know something they could email you your info, no? I pushed for Dani to finish one day she had left when Onco wanted her to take a break, well I didn't push, but I asked if it would really matter and in her case, he said fine.

    Shetland so sorry, it's always such a disapointment when you expect better news. But maybe you will see a reversal. And about the Faslodex as Stefanie mentioned, it seems to work for many with liver mets from what I have been reading in BCO. And thx for the great advise with the Systane.

    Ellelou, Kaption Alissa, Stefanie terrific news!! It uplifts everyone to know you guys are getting good results. So happy for you! Thank you for sharing.

    Lalady regarding the low platelets, that's what I am trying to find out, I know that rock bottom is dangerous, but when it's time to pull back on Ibrance re – platelets and low anc? Onco alomost wanted Dani to hold back on Plt 70 but she has been on 56 already.And Neutr Abs. is 0.8 But not so low WBC, what a mess. I was just curious for a certain number with other docs what is acceptable and what's a no go sign.

  • lalady1
    lalady1 Member Posts: 530
    edited March 2016

    Sonya - you will have a lovely time in the islands. Please feel safe and enjoy this cruise. :) Shetland - I am sorry to hear your results, but if you move to Ibrance+ fas like a lot of us you may be pleased. I'm on Arimidex too, so that may be a possibility to reduce estrogen. Let's see next PET results and discuss with your onc. We are here for you. Kaption - rooting for a great scan and some milder KC weather.

  • singlemom1
    singlemom1 Member Posts: 260
    edited March 2016

    Shetland, I am sorry for the concerning news. I am hoping that things will turn around and you will be receiving positive news as you find out more. Thinking of you.

  • Kaption
    Kaption Member Posts: 2,934
    edited March 2016

    Shetland, I'm also sorry to hear your news. Perhaps it will turn around or at least stabilize. Prayers for you

  • moissy
    moissy Member Posts: 371
    edited March 2016

    Shetland - Sorry you are in uncertainland at the moment. Yes, I was asking at my onc appt about how they would determine change in treatment because my alk phospate is up, TM's not dropping as they had been, and I have felt some weird sensations similar to what I experienced prior to diagnosis. So was wanting to start to gather up some advance info on how treatment changes might be made in the future. The only definitive thing I came away with is that any treatment changes would only be made based on scan. Like you, I have said to myself, hey, I want the 20 months! Smile We are all unique and will respond to each treatment differently. On one we may be on the low side of the median, and the next a super-responder :)

    So happy to hear you have a trip in the works. That sounds like fun!

  • CancerThriver
    CancerThriver Member Posts: 8
    edited March 2016

    Hi Dear sisters,

    I just celebrated one year on Ibrance and 5fu, a type of light chemo. Feeling great. Link t the trial is below. It is in DC.

    Sending love,

    Thriver

    Your trial falls under NCT01522989 which is called "PD-0332991, 5-FU, and Oxaliplatin for Advanced Solid Tumor Malignancies." We are still recruiting patients. More information can be found here: https://clinicaltrials.gov/ct2/show/NCT01522989. Interested parties should make an appointment in the Developmental Therapeutics clinic by calling 202-444-2223, chose option #2 to schedule an appointment with a provider, and option #6 for the Developmental Therapeutics clinic

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

    ShetlandPony, I'm so sorry to hear about the fear of progression you've been dealing with. I'm hoping and praying whatever they saw in your liver turns out to be a non-issue. If you do have to switch to Faslodex, I can tell you that I am loving it, especially compared to the A/I I was on, and hope you will feel the same. I know it's discouraging and scary to chalk a med off the list, but I've heard that many women are able to stay on Faslodex for years. And it's really easy -- just 2 shots and you're done for the month. Hopefully, it's still way in your future, but just offering you reassurance that whenever you go to it, it's a great med!

    I had labs (with Faslodex & Xgeva) on Wednesday, and just found out my TMs jumped from178 (which was down considerably over the past few months) to 207. Since I had good scans in February, I'm going to believe this is just crazy Ibrance stuff and NOT progression. But it sure is frustrating to feel so good and hopeful, and then -- WHAM!!! -- surprise!!! Grrrrrrrrrr..... I've emailed my UCLA onc, and will share if she offers any reassurance about Ibrance doing this, which we all know by now it can.

    Sonya, hope you're having a ball on your cruise! Fingers crossed for sunny days, balmy nights and no illnesses!

    Stephanie, YaY to TMs almost in normal range! That's fantastic! So happy for you!!!!!!

    Hi & hugs to everyone else!

  • Kaption
    Kaption Member Posts: 2,934
    edited March 2016

    Deanna, here's hoping and praying the TM is a fluke!! So hard to get mixed messages on our tests. Keeps us all edgy!

  • funthing42
    funthing42 Member Posts: 236
    edited March 2016

    I may be starting imbrace. Anyways distance recurrence in my left sided nodes. So they say.

  • Kaption
    Kaption Member Posts: 2,934
    edited March 2016

    Funthing, welcome to the group. I think you will find great information and support here. Sorry for the recurrence, but lean on us for help.

  • momallthetime
    momallthetime Member Posts: 1,375
    edited March 2016

    Deanna let's hope it's just one of those crazy numbers. Back a few months ago, this happened to Dani, actually on the reverse, and both Onco and I thought it's too good and we chalked it up to some mistake, and unfortunately we were right, it went up next and then it straightened out. Crazy stuff. When would you be retaking your BT's again?

  • lalady1
    lalady1 Member Posts: 530
    edited March 2016

    Hi funthing - we are here for you. Lots of info on Ibrance in this group. Dosage is; 125, 100 or 75mg. Please look into $10 Pfizer copay to save money. Hoping for no SE's for you. Please relax and find out what your onc wants to start you on.

    Deanna - sorry your numbers are up - hoping its just a fluke.

  • mdillard04
    mdillard04 Member Posts: 83
    edited March 2016

    Morning all!! Today marks my 14th day off of Ibrance. I have been having some right abdominal pains in the liver area as well as some pain right below the liver area. Just had a PET in January and now need to have another one next week. Also have been experiencing rectal bleeding. No longer constipated. Onc confirmed that it is not hemorrhoids. I was taken off Letrozole and put on aromasin. I was praying for joint pain relief, but there is no change. Argh!!!!

  • sonyarizzo
    sonyarizzo Member Posts: 69
    edited March 2016

    thank you so much ladies for the support. So far so good. My daughter has a cold so that's been a little stressful but I'm trying not to think about it. Lots of hand washing.

    Question. With my low RBC and low platelets. I am getting these strange bumps. They are large and bruised and there is a lump in them. Anyone else get this. I didn't bump these areas. They just keep turning up. Blood clots??

    Thank you!

  • funthing42
    funthing42 Member Posts: 236
    edited March 2016

    Thanks for the welcome.

    My history and track record stinks,literally every year it's come back.

    It's hard as you know I'm slightly loosing confidence.

  • NicciJ
    NicciJ Member Posts: 73
    edited March 2016

    Hi Sonya, I have been getting small red bumps on my arms, hands, legs, and feet, but not like what you are talking about. These, when you scratch them, are like "water-filled" and once scratched open, the place is red and itches. Really annoying!

  • singlemom1
    singlemom1 Member Posts: 260
    edited March 2016

    Mdillard,

    Good luck with the pet scan next week,Hope you receive good news!

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited March 2016

    Momallthetime, singlemom1, Kaption, Moissy, Deanna/dlb, lalalady1, and all. Thank you for the kind words. The support of my friends here is helping me cope with this possible progression. I cling to any encouraging thought. Maybe it will turn around or stabilize. Maybe faslodex will work really well for me. Deanna, what is it you like about faslodex compared to the aromatase inhibitor? I hope your TM change is just a weird blip. As you say, your recent scan was good.

    Welcome, funthing42. When do you find out if you will start Ibrance?

    Mdillard, I'm sorry you are going through all this stuff. Glad you don't have to wait too long to get some info from a scan.

  • momallthetime
    momallthetime Member Posts: 1,375
    edited March 2016

    Sonya the best i could tell you is to show it to a medical person, could be urgent care, or internist if you can't get to Onco soon, it's hard to tell otherwise. How low were your platelets?

    Everyone else, hi. Shetland you are very welcome.

  • momallthetime
    momallthetime Member Posts: 1,375
    edited March 2016
    http://www.foxnews.com/health/2016/03/19/best-teas...

    Teas that might help someone

  • funthing42
    funthing42 Member Posts: 236
    edited March 2016

    Hi all rough weekend, Friday was the revaluation my ca is back. Left side where I never had cancer. Anyways.

    I find out in two weeks in re: to treatment. I'm not sure Her 2 positive this time strong possibility.

    Good luck with your Pet.

    For all who are rashing out. Check it out.

    I've had many rashes after mx and Rads twice to the same area. When reccurrence happened locally in skin it looked like tiny red shiny bumps all in the area of breast scar and slightly below.

    My next eventful rash was after I healed from rads. It was a couple of pimple like things on my stomach, of course on the right just to freak me out. I squeezed fluid poured peroxide on them and they would not go away. Onc said go to the dermatologist. Gee whiz.

    Wow what a thorough dermatologist ever nook and crack was explored, samples taken. All negative he gave me a script for strong antibacterial cream. I guess with Rads and skin hair growing back some funky thing developed, no idea what the heck it was. Infected follicles.

    Then lol. I developed this pink hard tiny cyst on my sternum. Mosquito bite back to dermatologist I go.

    It's so cool we can share this with each other. :)


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

    Thanks for the article on teas, MomATT. The one for bloating sounds interesting. I can add that I use a "Detox" tea that I get in a tea & spice store, and I think it really helps my liver numbers.

    Sonya, I haven't had, nor have I heard anyone else decribing the types of lumps you've been getting. I agree w/MomATT about showing them to a doc.

    Shetland, to answer your question... what I like about Faslodex over Anastrozole is (1) It's a once a month dose, so you get it and then you don't have to think about it until your next onc appt.; (2) I immediately noticed I was sleeping better when I changed to it; and (3) My joints don't hurt as much as they sometimes did with Anastrozole. Of course, we're all different, but I absolutely love the ease of Faslodex.

    funthing, I'm so sorry about your re-dx. How was it found and is it metastatic? Is that why you think you might be getting Ibrance? (Sorry, if I've missed some of your earlier posts.)


  • susan_02143
    susan_02143 Member Posts: 2,394
    edited March 2016

    Shetland,

    Some encouragement from a former Ibrance person... Faslodex got me to NED and kept me there for five years. SE's were way less than with an AI, and my quality of life was terrific! If it works for you, it can be a silver bullet.

    *susan*

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited March 2016

    Susan, that is so great to hear! What systemic treatments (for stage II or iv) did you have before faslodex? Ok, dlb, better sleep would be most welcome.

  • sonyarizzo
    sonyarizzo Member Posts: 69
    edited March 2016

    I can't remember how low my platelets were. My onco nurse told me. All info should be in my online chart today so I will take a look. I don't get back into town till Saturday. But I am going to call my onco nurse today and explain the bumps. They seem to go down and turn into bruises. Could be that because I am now anemic that possibly I banged the area and it is bruising so bad it's causing a goose egg. It just scared me because I've never experienced that before. I was afraid it was a blood clot or something. Trying not to worry about it and just enjoy the cruise. I am a bit stressed about seeing my full blood report today. Praying TMs are down. Hope everyone is doing well. I haven't had a chance to read through everyone's posts. I will try to catch up with everyone when I get back

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