Ibrance (Palbociclib)
Comments
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Hi Wandering, that website is fabulous and the calendar section gave me lots of great ideas. Your post gave me some avenues to pursue, thanks for taking the time! Now I just have to organize it.
Vanessa
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Montana,
Thanks so much for the website and the info. I love the calendar on the website because it gives me lots of ideas. I hope I can get this going! Thanks for taking the time to share with me.
Vanessa
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Timeforacure- you are stunning with your great hair style,pink streak and that fabulous overcoat!
Grannax let me see if I am find the paragraph you are referring to amd I'll paste it in
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Grannax - I believe I have found it - Bravo!!
Sep 29, 2018 08:10PM - edited Sep 29, 2018 08:14PM by Grannax2
Here it is:
There's a monster in my life. He's real, not just a nightmare. He killed my mother and her mother. He haunts me and my family, including my sister. The monster is metastatic breast cancer.
I, however, am living with, not dying from metastatic breast cancer. I've had four diagnoses of breast cancer ( the first at age forty four) and even though I've had six different chemotherapy drugs, countless surgeries, radiation, hormone therapy, and targeted therapy, my monster still came back with a vengeance. However, successful treatment to the metastases in my liver has given me new hope. I knew nothing about SIR- Spheres Y-90 as a local therapy to treat "a lot of liver tumors." This treatment is my superhero that fights my monster. Liver tumors no longer have to mean certain death. I had my SIR Spheres Y-90 procedures 1-1/2 years ago and my tumors have been inactive since May 2017. My superhero zapped them into oblivion with the power of Yttrium.
I don't see my monster anymore.
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I'm only on Day 6 of Letrozole/Ibrance and I'm already so fatigued that I spent the whole day in bed. Has anyone had this extreme fatigue on Ibrance, or is something wrong? My oncologist will not take non-urgent calls, so I have no help on this.
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Hi Amica,
I had awful fatigue at the beginning, but it lifted a great deal by the third cycle as my body got used to it- sometimes it comes back and hits me (no doubt exacerbated by whatever else I've been doing) but it overall has been fine and I'm still on the 125mg dose. I am struck by how long it took your cancer to return, so lots of reasons to hope for a good long run on this drug combo once you get past this part and things calm down..
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thanks cure-ious
That's good to know, that it may lift a bit as my body adjusts.
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Amica - my fatigue was awful the first few months And now at cycle 9, it is indeed better. I attribute it to 3 things:
1- anticipation, I was looking for it and gave into it.... sleeping more often than i actually needed - which is related to #2....
2 - depression, I didn’t realize I was actually also mildly depressed until I started to come out of the fog of my diagnosis. Recognizing this was critical to addressing it. For me, I needed to move my body to feel better. I started walking and it helped immensely.
3 - radiation, I had a single bone met that was radiated at the same time that I started Ibrance. This combo for sure had an impact.
Having said all of this, the fatigue is real and for sure the most common side effect. I am amazed by how much it has improved over time, though just today i took an hour nap after work! 😴. I have settled into it, I now know what’s ‘normal’ and what’s not and I’ve found it varies through the cycle.
Here’s hoping yours also improves!
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thank you LaurenH, that's useful info
I do walk daily, and that's actually the only time I feel better, so I guess maybe I should walk more.... 0 -
Amica, I agree with the others. I felt better when my body adjusted some. I am on cycle 28 now and some days I actually feel good--just as long as I don't do too much. Walking does help and I pace myself between days I walk and days I do other activities, but most of the time I do ok. I am actually worse on my week off and on Letrozole alone.
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IntoLight - thanks
That gives me hope, that there seems to be a consensus that the body adjusts somewhat. Cycle 28--power to you! 0 -
time-for-a-cure, You look fabulous, Dahling!
To those of you getting scans this week, knock 'em dead.....oh, maybe that's not appropriate....well, sure it is!
PatG
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To all...had my PET scan yesterday, and my "stealth radiologist" came through, having his partner at the hospital surreptitiously read the scan for him since my friend was out for two days. My precious friend's text to me:
"Great news! All stable! Nothing new! Hooray!!!! I will look at the scan myself when I get back to work on Thursday!"
What would we do without friends?!? And, it would have been next Tuesday before I officially got this information.
Amica, I think that you will find that your body will begin to adjust as you get further into the treatment. Now I can't tell if I am fatigued or just OLD (72)! Lots of us have found that walking daily, even when it seems too hard to do, is an amazing way to keep your energy levels up. Try to keep moving!
Hugs to all and especially to those with scans this week-
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Great news JoynerL...
Amica...It does get better with the fatigue.....hang in there
Thanks PatgMc....Friday is the day for me
Thanks LaurenG....no more monsters for us all0 -
Joyner i’ve been thinking of you and wondering. I’m SO happy !!!!! :-)
I had mine yesterday too but have no stealth friend so I am in the waiting mode. It’s always reallytough.
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I wish I had a stealth radiologist!! Great news Joyner. I agree, no more monsters only superheroes!
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I bought some glittery shoes for The runway They have a little kitten heel that I can walk in
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Amica, the fatigue got a bit better after a few cycles. I've only been on it since the end of March. I still have fatigue but it's a little less. I agree with IntoLight that I feel worse during the off week with only the letrozole.
Joyner, great report!!
Grannax, sparkly shoes! They are pretty.
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Very cute, Grannax! You'll be a star!
Good luck, Penny and all. I lucked into my stealth radiologist, as he was my client, and we became great buddies during several real estate transactions. It all started when my "bad diagnosis" came as a result of a chest CT for something entirely unrelated (and benign), which showed mets in my ribs and sternum. My GP called me in and said that I'd need a bone biopsy, which she pronounced would take "a week or so" to schedule and another week for results. I texted this dear client as soon as I hit the parking lot, who called me within 30 sec and said, "Be at St. Mary's at 10 tomorrow morning. I'm on duty performing bone biopsies". He did the biopsy and got me the results on Monday or Tuesday of the following week. A miracle of efficiency and kindness. He's been hovering in the background every since, ready to pounce on whatever scans I get. My MO hasn't the slightest idea.
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Yay Joyner!!! What a great way to wrap up your incredible trip!!
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That's terrific, Joyner!
Perfect shoes, Grannax!
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My bone scan showed no active lesions. Something did light up on my jaw bone but they suggest it’s dental related. I’m having it double checked. For now, I’m celebrating.
Well, right this actual minute I’m choking down the barium drink before going in for CTs once I finish the second bottle. Man I hate this stuff. Blarg
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Thanks Joyner! Any chance your stealth radiologist can hack into one of those little gigantic hosptial systems in New York City and do a read for me? ;-)
Amica, I'm in cycle 23 and, while my other minor side effects have diminished, my own fatigue has stayed about the same over the months -- managable but I do need to manage it. I need a solid 9 hours sleep a night to be at my best and I sneak in a nap in the afternoon if I can. But I have two teenage kids and a half-time job and I've been able to do it all (with more than a little help from my DH). One thing to consider if it stays so difficult for you is to reduce the dose. Are you at 125mg now? Studies are showing the 100 and 75 can be just as effective.
PatG, oh dear PatG, do you really say, "Knock 'em dead?!?" That, my friend, made my day!
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Jensgotthis - YAAAAAAY!
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Great news, Jesnsgotthis! Hoping your CT is just as good
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Hey, jensgothis...
Jen's got this! I'm happy for you!
Penny, surely someone hacked into my account.
PatG
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For all you newer Ibrance Dancers who are just learning the meaning of fatigue and the rest of you who are probably napping as I write this, here's the word of the day:
Love from PatGMcQuanked
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Jen...YAY! Let us know on the CT!
Meanwhile...we're quanked and headed to bed!
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hi Lauren, I’ve got MBC. Newly diagnosed with mets to liver and more lesions than they can count. They are starting me on Xeloda. When would you bring up something like this Sirtex spheres you mentioned as your superhero. Is it after a couple of lines of offense don’t work? With other drugs?
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Hi Mlotti and welcome here. So sorry that you had to join us. I would love to be able to answer your question but that post about superheroes was written by Grannax. She posted it to a different thread and wanted to share it here so I copied and pasted it for her. I am sure she’ll be around at some point soon to answer your question!
In the meantime - we’re all here to help and support you! By the way - you might want to check out the liver Mets thread, where Grannax originally posted her message.
Love to all -
Lauren
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