Ibrance (Palbociclib)
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Ciaci, congratulations on your great scan!!! So awesome!!! As far as bloodwork, my onc will only let me go 8 weeks without bloodwork. I’ve been on 100 mg since my second cycle. I’m on cycle 39 now. I’ve never had any issues with my counts at all but she still won’t let me go longer then 8 weeks. She says that Ibrance is still a fairly new drug and she likes to keep an eye on things.0
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Great report, Ciaci!
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Ciaci, YIPPEE!!! Congratulations on the great scan and news!
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Ciaci congrats on the scan news. So happy for you!
I have been NEAD for over a year now but still get monthly labs and scans at 6 months. Could be I am on 125 mg and had extensive mets with liver involvement. Works for me. I see my onc every 3 months.
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Ciaci;
Wow! Those results are wonderful. Congratulations. It's so encouraging to hear this and know that women on the site are actually NEAD using Ibrance/Letrozole.
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Ciaci- Fantastic news!!! Congratulations, and now you get to breathe again!!
I just got a clean set of scans too, and am heading out shortly to Heidelberg-Munich-Prague-London, first for a meeting and a bit of work, and then for a bunch of vacation- Happy Summer, Everybody!!!
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Yay for clean scans, Cure-ious! Happy vacation to you.
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curious and ciaci
Congrats on beautiful pictures.
Tanya
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And the Ibrance Dancers celebrate with yet another NEAD! Hooray!
Congrats to Ciaci, our newest! Ciaci, I wouldn't worry about stopping the blood tests. Just step out there and enjoy your cancer-free life. Think of yourself as a well person once again!
Love from PatG
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Ciaci, I am SOOOOOO thrilled for you. Yay!!!! To answer your question, my MO is letting me skip the bloodwork next month for the first time because I will be traveling. But I go back in September. My counts have never dropped below 1.0 since I switched to 100mg last year but sometimes they are a little too close for comfort.
Cure-ious I am of course THRILLED for you too! When I first joined this board (following a false alarm where it had looked like there had been significant progression) seeing that you were more than two years out gave me great hope. And now you are three?!? Wow.
I wish you happy travels my friend. PatMc, Joyner and myself, along wioth a few others, will try to keep up with the research while you are away. ;-)
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Cure-ious
I am so thrilled for you and Ciaci. I wondered what NEAD would do for those fortunate enough to achieve it. Would it mean a normal sort of life again or not. I am so happy you are able to travel so extensively and enjoy life. Wonderful and enjoy the summer.
My best wishes to all,
Cathy
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Cure-ious, all us Ibrance homebodies will be expecting photos from the exotic places you'll be visiting! That goes for the rest of you who will be traveling.
I'm happy to say the art show at LRoss Gallery in Memphis, "Shake, Rattle and Roll" opens next week-end. They included one of my pieces on the invitation and I was popping with pride, then I found out it sold to the first person who saw it! So thrilling! It's a piece I worked on to get my spirits up this past winter when I had the Black Plague/Pneumonia so it's special to me.
"If the Beatles Can Barbecue a Baby Buffalo in Birmingham on Bear Bryant's Birthday, Anything is Possible and Elvis Is Alive & Cookin'!" 12 x 12 Mixed Media on Canvas
The Queen sends a special hello and a Coke to you folks in Canada and Australia!
Love from PatG
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Ciaci: congratulations!
Cure-ious: congratulations to you as well! You will be quite close to where I am living on your travels. Probably, you will even travel via my home town Frankfurt, because we have this big international airport. Is there some conference in Heidelberg? They have a very reputated university there, they are also very good at immunotherapy research (probably the best in Germany). Make sure to pack some summer clothing, we are currently having quite a heat wave with more that 30°C.
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Fabulous, Pat!! Wish we could all zoom to Memphis for the opening!
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PatG I even (even more!) honored to know you. :-
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I am doing a serious happy dance 💃🏿 over here to read these amazing posts!! Congrats to everyone who is NEAD and/or getting the green light to relax from their MOs. That is SO encouraging!!!!! These boards and community help me stay positive so so much!
I went from a deep grief and depression last hear about my diagnosis to being able to realize I can live very happily with this diagnosis. Yes there are some annoying side effects but I have changed my life and lifestyle (especially mentally) so much to make myself healthier and I can feel the benefits.
PatG thank you for sharing your beautiful and super cool art!! What an amazing feeling to have it sold so quickly! So flattering! I hope you keep making more art if it makes your heart soar
Lynnwood - the mouthsore healed so quickly from the magic mouthwash. I was back to my old self in 24 hours and then went out and did my fav activity - salsa dancing with my beautiful friends. Here is a from Friday night! (I'm the second from the left!).
Now packing for two weeks in the PNW!! SO excited!!
Love to all,
Brenda
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Brenda what a great picture! You are absolutely beautiful!! I agree, went from a dark place to realizing life is good, sure it’s not perfect with the metastatic diagnosis & side effects, but it’s not bad either . My husband and I have several trips planned this year, will not allow the diagnosis to own me. Enjoy PNW!!
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Love to hear all the things my BCO sisters are doing!!! Lovefromphilly--Great pic!! Cure-ious---Happy travels!!! Post plenty of pics. PatgMc--Great Art!!! Ciaci- Congrats!!!
I am envious though. I am happy my latest scans show "stable" and I continue the meds, monthly labs and MO visits. I think I am on cycle 8 of the Ibrance Dance. But I don't know if I would feel up to traveling, etc if given the opportunity. I get tired so easily. I sit down to watch TV or read a book ( I love to read ) and I fall asleep. My joints hurt like an old lady. When I get up at night to pee I hobble to the bathroom because my heels and feet hurt. And the hot flashes are horrid---I was standing at my kitchen counter eating a bowl of cereal in my robe the other morning and I was sweating so bad the sweat was plopping on the kitchen floor. Good grief!!!
Now I am having some shortness of breath with exertion. I walked over to my sisters house next door--yes she lives next to me--and I was huffing and puffing. I go for a pulmonary function test this week. I know it is not cancer, the CT came back with a small lung nodule stable from last scan. We shall see.
Sorry to be a downer. I love to hear from all of you and celebrate with you the good news. I admire you all. You are a strong group of women that does not let cancer get us down!!!
Keep up the posts. I love this site!!
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Brenda, hooray on conquering that mouthsore and going dancing. Such a pretty and joyful group!
candy-678, I'm thankful you've stopped that cancer in its tracks. Now let's think about improving your Quality of Life! Which dose of Ibrance are you taking? There is no reason you can't insist that your doctor reduce it. Conquering cancer is important but if you can't live your life, it kinda' seems like time to consider some options.
About those joints, that's most likely from Miss Femara. You could ask about switching to Arimidex. I could hardly walk (legs, heels) or use one of my hands on Femara. While I have some tendon/joint problems now, they are not the debilitating ones I had before. I do take Turmeric (from Amazon) and feel sure it helps as my husband takes it for arthritis and it helps him.
For the hot flashes, I recommend ordering a Chillow also from Amazon. Put one inside your pillow case for instant relief! I also have shortness of breath with exertion so I just don't do a lot of physical stuff. That just is what it is until someone here gives me a remedy! It's definitely better since I reduced my Ibrance dose to 75mg. I've also switched to 3 weeks on/2 weeks off. Indigestion and nausea are the most consistent side effects I have right now but I've learned that Ibrance side effects come and go so I look for that to get better someday. My best to you and all our friends here. (I wish I lived next door to my sister!)
Friends, thanks for the kind words about the art. I highly recommend that all of you order some simple supplies and give art making a try. I'm happy to recommend some good ones or you can look at www.dickblick.com for a wonderland of fun! Even those coloring books are therapeutic.
Love from PatG
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Brenda, fabulous photo, friends, and attitude adjustment!
Candy, a slight edit to your posted comment: "WE (as opposed to I) are a strong group of women that does not let cancer get us down!!" You're there, too!
And to all...
My precious husband and I are about to embark (quite literally) on a boat trip! We are in the process of purchasing a boat in Green Bay WI (we live off of the Chesapeake Bay in VA), and we leave on Tuesday to close on the boat and bring it, by water, back to VA. WHEW and hooray! I have to be back in VA for my Faslodex shots on the 14th, so we'll come back briefly and will then return to the boat, which will be by then, I think, in Canada, at that point, and continue the voyage home. We have decided (at 72) that NOW is the time to kick up our heels and enjoy each other and our lives. Keep your fingers crossed that we are not pulled dripping out of the drink somewhere in the Great Lakes!!
Stand by for updates from this patient.....:)
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5/2 Dosing. I was feeling really good about this change. I had stable scans and a good doctors appointment a week ago, although my ANC was down to .9. I've been on Letrozole/Ibrance for 21 months-in that time I have barely been sick. I've had 2 24 hour bugs in all that time. Well now I have had a fever/aches for 3 days so I'm starting to think that this dosing is probably not good for me. Hopefully the fever will go away in a few more days and I"ll give this more time but if I get another one, I"ll switch back to 21/7.
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Joyner-Your trip sounds so exciting! Hope you have a wonderful time.
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To Joyner and Hubs: Bon Voyage!
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Joyner, is it a sailboat? My DH and I love to sail here in San Diego but casually and calmly in the small bays. You are brave! Go for it! And keep,is informed
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Thank you ladies. JoynerL- I actually had typed "We" first and changed it. Thank you for what you said. PatgMc- I am on 75mg dose of Ibrance 21/7 dosing. I will think about the turmeric idea. And I will look into the Chillow. I don't want to sound like things are horrible. I work, go to church, maintain a home. I just don't have the "oomph" to do all the things some of you are doing. I read posts about travel, mountain biking, hiking, etc. Koodos to those who can do that, I just don't feel THAT well. Someone posted that they forget they have MBC. I wish I was that way. I feel way different than even 1 yr ago. But then I think when things progress ( hopefully not for many years ) I will look back at these moments and want them back---pain, sweating, and all.
I can always see others worse than me and it puts me in my place. A women who works in my company was just diagnosed with glioblastoma. In her 30ies, married, with young children. So sad.
PatgMc- Love your last post-haha.
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Candy, I just want to encourage you not to dwell on what others can do. I am more like you. I can't climb stairs without sitting down. I can grocery shop and cook dinner but only one thing at a time. If I cook dinner I can't do the dishes afterwards. Still, I am happy for what I can do.
I travel minimally. Right now I am in Colorado Springs but I Made the mistake of riding the gondola to 11,000 feet and now I am paying for that with altitude sickness. (I live at sea level.) Fortunately my bro in-law has an oxygen machine so I am hooked up right now. It has helped some but I still feel lousy. But I am here enjoying family.
You are not alone Candy. I am sure there are others who struggle too. But I get to hold my granddaughter every day, get to love on my DH and DD, and get to talk to my boys whenever I need. That is good to me.
Hang in there. Chris
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What Chris said, Candy!! I haven't shopped for groceries in a year, haven't driven my car for that long and got out of breath last night trying to tuck in the sheet at the end of our bed. We are keeping meal delivery services in business....loving Doordash and Bitesquad! It's not always going to be this way and I absolutely expect to be well and off medicines one day. I have friends who have done that so I know it's possible! It can also happen for you and everyone else here. Right now I'm hoping and praying I won't be nauseous and miss my art opening reception Friday night. I'm planning to hit the Zofran in spite of the headache I'll have later.
Love from PatG
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WOW JoynerL sounds like a great adventure. I am a boater (sailer) though I always say every sailor has a power boat in their future. I live in Milwaukee and sail on Lake Michigan, in my past I did a lot of racing and cruising. The Chesapeake wa a favorite location. I also own a home in GreenBay. Where are yo picking up your boat? Is it sail or power - and most importantly are you looking for crew? :-)
Kitty
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YIKES on that photo, Pat! I'm hoping that there aren't any Great Whites (or other such species) in the Great Lakes! I think that they're purely salt-water!!
To you kind boaters who have asked, she's a powerboat: a Sabre with twin diesels. And, so that you're not thinking that we're foolish beyond words [though we may be] to embark on such a purchase and journey, we've had boats, including cruising boats, our entire lives [this is surely not to say that we cannot sink with the best of them.....:)]. We'll pick the boat up in Sturgeon Bay (she's berthed in Fish Creek, but we're having some work done in Sturgeon Bay) and head across Lake Michigan either to Charlevoix or further north to Cheboygan. We have NO EXPERIENCE on the lakes and have been sternly warned about checking weather and being willing to stay in port until the winds are appropriate for setting out. We shall do so. Keep your fingers crossed for us. That said, Pat, if I had a choice of dying from MBC or your bus(!), I'd take sinking, as long as DH floated off to safety in his life jacket.
Kisses to all...
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Safe travels, JoynerL. Sounds like a good trip. I'll be watching for your updates.
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