Ibrance (Palbociclib)

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  • LaurenH
    LaurenH Member Posts: 389
    edited October 2018

    Jaycee- wow what an awful day! I don’t have a port so I can’t comment there but I had no idea there were mobile PET scanners. Mine is in a cancer center, with fluffy therapy dogs to calm you in the waiting room: The quiet room is quiet, they have a blanket warmer and everyone is very kind and lovely. I didn’t know how lucky I was! I hope your results are way better than your scan experience!

    Penny - yahoo! so happy for you!

    Pat Mc - out loud laughter!

    To the person who asked about the 18 year survivor - I will get you that info

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  • LaurenH
    LaurenH Member Posts: 389
    edited October 2018

    Rameshd33 -

    The Facebook group is “Peope living with Bone Mets Group” and the poster was Chris Wong.

    image

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  • Josalo
    Josalo Member Posts: 16
    edited October 2018

    Jaycee49
    I'm doing the scan every 3 month in Sweden. The nurces said that they do not want to use the port and one reason was the less reliability. So they have never used the port on me even if onc said it would be ok.

    Today I woke up feeling as my body felt a bit better. Thinking that the last two days I haven't need the same amount of painkiller and I do not have the restless in my body that disturbed me. I do not know if it's because of the new med or if it's imagnitation. Hopping it is the med :-D but could they have that effect after only 2 weeks

    Have a nice day all of you from a autumn grey day in Sweden

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  • jensgotthis
    jensgotthis Member Posts: 937
    edited October 2018

    I have a port and they use it for CT scans but won’t use it for the bone scan because of the tracer. Who knows what’s right or wrong.

    All my scans came back clean. Looking forward to enjoying the next 2 months and 2 weeks until I start obsessing about the next round.

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  • LaurenH
    LaurenH Member Posts: 389
    edited October 2018

    Jen - so great that your CT was also good! Give yourself an extra week of stress free pre-scan time, so 2 months 3 weeks. I actually schedule my stress in my calendar so I don’t start too early. lol

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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited October 2018

    Now were zombie quankers?!?! I think I must have missed a post or two.

    Today is the day. I woke up thinking why oh why did I agree to do this? I guess I am quanking about the runway! Well, I'm sure not stressed about cancer today, that's a good thing.

    I've decided if the interviewer asks if this is a dream come true for me I will say, No, I always dreamed of being a jockey. (True), my body type used to be much better suited for that, not this! I should get a laugh out of that statement. Hahaha

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  • MuddlingThrough
    MuddlingThrough Member Posts: 726
    edited October 2018

    Penny and jensgotthis, yay for good reports!

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  • Iwrite
    Iwrite Member Posts: 870
    edited October 2018

    Grannax- You will do a great job! Perfect shoes and perfect answer :

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  • Iwrite
    Iwrite Member Posts: 870
    edited October 2018

    Grannax- You will do a great job! Perfect shoes and perfect answer :)

    Jen and Penny- wonderful news! Now you can relax for awhile 😁.


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  • jaycee49
    jaycee49 Member Posts: 1,277
    edited October 2018

    May 24, 2018 03:39AM JoynerL wrote:

    "Cure-ious, I have no intention of dropping my dosage unless I need to. I hope that I don't, as rule followers (my picture is beside the definition in the dictionary) tend to twitch if coloring outside of the lines."

    There are more. Just go to search and use "rule follower" as the key words. You will find a slew of Joyner posts in this thread (otherwise known as a string). So who told me you are a rule follower? You did. (I have a really good memory) (I didn't know there was a quota on parentheses.)

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  • JoynerL
    JoynerL Member Posts: 1,393
    edited October 2018

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  • LaurenH
    LaurenH Member Posts: 389
    edited October 2018

    Jaycee - do you have tips for keeping your memory sharp on Ibrance? I used to have an amazing memory. It is deteriorating on Ibrance. Long term is still in tact. Short term is wonky as hell, which means I am now losing new long term memories, as well. I hate this side effect more than anything!!!!! Does anyone have ideas

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  • JoynerL
    JoynerL Member Posts: 1,393
    edited October 2018

    I don't remember......

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  • PatgMc
    PatgMc Member Posts: 1,315
    edited October 2018

    Post-it notes, backs of envelopes....anything worth remembering gets written down.

    I know some of you have, like me, had loss of hearing. Mine was confined to the left ear. I wondered if it was the XGeva but I'm thankful to say that reducing my Ibrance dose to 75mg has stopped the progression and it has even improved pretty dramatically. The ear popping I was experiencing stopped altogether. I imagine my husband is happy not to have to repeat everything!

    jensgotthis, Congratulations! Have you considered stretching it out to 6 months between scans? I love having fewer seasons of stress.

    Grannax, we're anxiously awaiting photos! I almost sent you a "Break a leg" wish last night but thought better of it.

    Have a great week-end, everyone!

    Love from PatG

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  • jensgotthis
    jensgotthis Member Posts: 937
    edited October 2018

    Pat, I have thought about stretching out the scans and boy would I love to. I think once we are sure I'm not creating blood clots, then I'll have a stronger case to make. Unfortunately, I developed clots while on blood thinners as per the July scan. They're gone as of the scan this week. We'll see what happens in Dec/Jan when I go again.

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  • jensgotthis
    jensgotthis Member Posts: 937
    edited October 2018

    Actually, I don't hate the scans themselves...it's that effing barium drink. It makes me sick for about 24 hours :-(

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  • PatgMc
    PatgMc Member Posts: 1,315
    edited October 2018

    Jensgotthis, I hear others speak of drinking something but I've never in all my years with this had to do so. My contrast has always been delivered by injections. After I was metastatic I've only had PET/CT scans. I can see why you would want to keep a close watch for blood clots. Hopefully, you're done with that!

    PatG

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  • Penny-78
    Penny-78 Member Posts: 271
    edited October 2018

    I'm finally back ... and did want to thank you, friends, for the hoorays!!! And I can't tell how how thrilled I am to share good news with Joyner and Jen as well. I wish the same for Airlinegal, for whom I beileve today is the day. Many more fingers crossed!

    Amica, you've probably already heard that many studies are showing that 100mg and 75mg are proving to be ust as effective with fewer side effects. I was moved to 100 after about six months -- and that was 16 months ago!

    Josalo I started feeling better in four or five days. This is powerful stuiff!

    Grannax -- photos please!?!


    P.S. I think I saw that someone else posted she has scans next week? Please remind us

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited October 2018

    Wow- congratulations to everybody on their scans!!!

    For the newcomers, here is the updated statistics from the Ibrance-Femara (Paloma-2) clinical trial released last December at the San Antonio meeting, at that point was 3 years of follow up and the PFS overall for 444 patients taking Ibrance-Femara was 27.6 months (compared to 14.5 months on femara alone), and for the subset of patients with bone-only mets the PFS was 36.2 months (compared to 27.6 months with femara alone). Possibly these data will get updated this December at the next San Antonio meeting and reveal even higher PFS numbers, as they continue to follow the people who may still be taking the trial drugs- we know from a Rugo tweet that she has (at least one) patient(s) still on the Ibrance-Femara at five years.

    Here is the link: https://www.practiceupdate.com/content/sabcsnbsp20...


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  • PatgMc
    PatgMc Member Posts: 1,315
    edited October 2018

    Cure-ious, we get so much smarter when you post! Thanks!

    PatG

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  • airlinegal
    airlinegal Member Posts: 244
    edited October 2018
    Had Pet/CT scan today and Onc called me tonight at home with results. They do not see any evidence of bone mets...Ibrance has knocked them out. The tumor met on my lung has decreased significantly and the SUV on the Pet showed reduction in that area. The lung met has been stationary for the 2 yrs of diagnosis and is just now showing a decrease. Yeah!
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  • skyfly
    skyfly Member Posts: 85
    edited October 2018

    Cure-ious, can you save me the trouble of making an account on my phone? These study numbers are always medians, correct?


    Airlinegal, congrats thats wonderful!

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited October 2018

    Yep good point-remember that half of the responders go longer

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  • PatgMc
    PatgMc Member Posts: 1,315
    edited October 2018

    airlinelegal, that's just magnificent! Ibrance is definitely your wonder drug! I love how it's doing that slow dance in your lung and one of these days you'll be NEAD!! You've made my day and I think I'll get up and twirl!

    Love from PatGMc

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited October 2018

    Thank you Cure-ious for the updated data for Ibrance/Femara median PFS. I will give myself a new goal of 27 months!

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  • LaurenH
    LaurenH Member Posts: 389
    edited October 2018

    Wow - another great scan! Yay for you Airlinegal!! It’s been a really promising week. Thanks for the updated stats, Cure-ious.... praying those numbers go up even more this year. Maybe they will start counting in years rather than months!

    Love to all,

    Lauren

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  • jensgotthis
    jensgotthis Member Posts: 937
    edited October 2018

    Thank you so much Cureious- I have a new longer target in mind now. Awesome

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  • JunieB
    JunieB Member Posts: 1,023
    edited October 2018

    jensgotthis - You mentioned that you developed blood clots while on a blood thinner. Which blood thinner are you on? I had 1 clot in my lower left leg and while on Xarelto I developed 2 more. The vascular doctor then put me on Lovenox & Warfarin initially, then only Warfarin. However, when I was at the Mayo Clinic back in August they told me that Lovenox is the gold standard for cancer patients. I'd never heard this before, but now know of one other woman who was told this by her docs, plus my MO confirmed it as well. I am not thrilled about giving myself shots daily, but apparently some patients can develop clots on the Warfarin. Anyway, I am still mulling this over and maybe a little procrastination as well. Not to mention the co-pays for the Lovenox/Enoxaparin (generic version) with my insurance.

    Also, what type of scan is it that you have that shows the clots? PET? MRI? Thanks.

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  • Leapfrog
    Leapfrog Member Posts: 464
    edited October 2018

    Thanks NettaGER and Seaway for your input about the staining. I'm going for an ultrasound on Thursday as I know there must be a reason.

    Thanks Pat for your very well put kick in the pants to my husband! And thanks Skyfly, Tanya, JoynerL and IntoLight for your support. My husband has just been here to visit me. When I talk about how I'm going to live here till I'm 80, thanks to Ibrance dancing, he sort of shudders inwardly. Not sure what that means! But he's acting as though this is a perfectly normal situation so I chat away to him as if we're old friends but I can tell you NOTHING will move me out of this apartment and this life now!

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  • JoynerL
    JoynerL Member Posts: 1,393
    edited October 2018

    Airlinegal, WHOOPEE!!

    Cure-ious, is there similar recent data available for Ibrance-Faslodex?

    Grannax....drum roll....photos???

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