Ibrance (Palbociclib)
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Thanks for the book recommendation, friends. I just ordered it and can't wait for the inspiration. After the Viet Nam War ended many of the refugees ended up in Memphis and my friends and I volunteered to help them assimilate. I was young and dumb and probably did more harm than good trying to teach English to a group of them. Every time I read of the success of those refugees I'm thankful for the Americans who kept plugging away and didn't give up as I did. Julie sounds like one of the success stories and I can't wait to read her words.
Love from PatGMc
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Like Piggy, I've been reading every word, though I haven't posted in a while. But I wanted to pop in -- I need to say how thrilled I am to see the good results for Nicole, Airlinegal, Intolight! Much happy dancing going in in my neck of the woods!!
I start cycle 36 this week. My whacky and varied side effects have mostly gone away and it's really just the fatigue now. My DH and I are more absorbed in trying to care for our teenage daughter, who has been struggling with her own health issues, than thinking about mine. That said, my 6-month scans are in three weeks. Scanxiety is beginning to take hold ...
I'm sure that part of what helps me thrive is all of you. Jacyee, you are so droll! Nicole, Candy, Philly, DivineMM, Laureen, Janky, Ciaci, Jensgotthis you are one amazing group of women. Cure-ious what would I do w/o you, your research, and explanations. And Pat, oh Pat how can someone be so funny, loving and smart at the same time?!?
Hugs to all,
Penny
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Penny, you are precious and we're blessed to know you. Thank you for your kind words. Tonight I'm sending up prayers for your daughter. Nothing is so hard as seeing our children suffer.
Love from PatGMc
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Penny - thanks for checking in, even amidst the issues you are addressing with your daughter. Praying for her and your upcoming scans. Keep us posted on how those go.
Love to all,
Lauren
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AWWW Penny thanks for all the kind things you said! I will be praying for you with your upcoming scan. I love reading how positive and kind you speak. You are a blessing to us all!!
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Penny - I am sending you and yours healing hugs (virtual) and hope they help!! Such a long, bumpy journey that none of us chose, but so glad we have connected.
I am so appreciative of the insights, humour, and good thoughts from everyone - wishing great, or at the very least, good, stable scans and results for you all.
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I want to share fabulous news from one of the survivors in our HopeUp MBC group. She had scans at MDAnderson yesterday for her metastatic inflammatory breast cancer and they showed she is NED!
Please celebrate Sally and thank God for this great news!
Love from PatGMc
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Pat that is something wonderful to celebrate indeed!!!
P.S. Have I told you lately how much I love you all? 😊❤️
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Love that kind of news, Pat! 🤗
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not o Lu is there so much knowledge and honesty here, along with laughs; there is such love. For all of these things, I am so grateful to all of you
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Penny, they say a mom is only as happy as her saddest child...hoping whatever issues your daughter has are temporary and easily solved. Wishing all of you peace and love.
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Penny hope all goes well on your scan. Also thoughts and prayers for your family. Cure-ious how peaceful is the ocean....so soothing. Pat singing praises for Sally...my hairdresser at the age of 34 passed away of inflammatory breast cancer. I loved her so much...it still brings tears to my eyes when thinking about her. She fought the good fight with dignity. When I was diagnosed with recurrence (MBC) I didn't tell her because she was going thru so much herself. She knew something was wrong because I was loosing my hair. I finally told her and she said "why didn't you tell me so I could help you"...undoubtedly the sweetest person. She didn't make it but her memory lives on in the many lives she touched.0
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Do you take your Ibrance and Letrozole together at the same time each day? Is it OK to take them at different times?
I have been taking Letrozole in the morning and Ibrance with a larger meal in the late afternoon. Splitting it up like this helped with nausea I thought (and I thought the pharmacy said it was OK to do this). I'm on 75 mg, Cycle 10, with many times I have had to take the extra week or even two to get my Absolute Neutrophil Count to 1.0. (i.e. 1000)
My last scan in July showed a slight progression (a new 1 cm medial mammary lymph node) pop up after less than a year on this regime, and I started wondering maybe I'm doing something wrong. Since it was not a large progression my onc is trying three more months on the ibrance/letrozole regime but if progression continues at my next scan in October, she wants to switch me to either tamoxifen or faslodex. We didn't talk about the options too much but I got the impression she meant one or the other and she didn't mention taking either of the drugs with any other drug. I was first on tamoxifen from 1998-to 2003. She seemed to have misgivings about taking the Aromasin/ Everolimus combo because I had 5 years of Aromasin that didn't finish until 2010.
Many thanks for the wisdom and good cheer I find on this thread.
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Amica, I've been on Ibrance/Arimidex (a different AI) for almost 3 years with good success. I take the drugs together with dinner. I don't know if it makes a difference but you might want to consider doing the same if you're concerned. It can't hurt. I wish you the best on that next scan!
Airlinegal, I'll place your friend, Sally, in that special place in my heart where brave, selfless survivors live on. I'm thankful for each story I hear and for all the love left behind in this world.
Love from PatGMc
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thanks PatgMc !
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Amica, one more FYI: I had a little disease progression after backing up to 75mg. I went back to 100mg and had regression again.
PatGMc
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That's interesting to know, thanks PatgMc!
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Amica,
I had some slight progression at 3.5 years, they sent me to radiation to zap two spots and I've had a couple of clean scans since then, so it may be possible to eke out more time. Ask if its worth radiating the spot, at least if it gets bigger next scan. The radiation can give an abscopal effect to help your immune system hunt down the cancer, and the Ibrance may be boosting your immunity, so radiation could work with the letrozole. Also, I added Celebrex, an anti-inflammatory NSAID that really helps me with the arthritis stiffness I get in my knees from the letrozole, plus it has strong anti-cancer activity and might delay progression.
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Cure-ious, I picked up the Celebrex prescription and my chemo-brain let me forget to take it! Thank you for the recommendation, my friend!
Love from PatGMc
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Friends, I just saw an article that took my breath away! You know my daughter and I have the BRCA1 mutation and I have great concern that my fifteen year old granddaughter may have to deal with BC one day.
This study in San Antonio holds such hope for those with BRCA1 and, of course, it could translate to other genetic mutations.
I've sent a message to my oncologist to find out how close this is to human trials.
"MiR223-3p acts like a light switch, turning off proteins that BRCA1-mutant cancers need to divide properly. Without these key cell division proteins, BRCA1-mutant tumors commit suicide, Dr. Hromas said.
It's kind of a cool way of thinking about treatment," Dr. Hromas said. "We are using the very nature of these BRCA1-deficient cancer cells against them. We are attacking the very mechanism by which they became a cancer in the first place."
https://news.uthscsa.edu/novel-therapy-studied-for...
Cure-ious, do you have any info? You're always my go-to genius!
Love from a very excited PatGMc
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Hi All...adivce please
I developed a big canker sore inside my lip and a big fever sore on the outside of my lip almost a week ago. I tried doing the salt water swishes had to stop bc my mouth was getting raw. I been swishing with biotene and for the fever sore I have been using a abbreva.
My ANC is always like .84 on my last week of 100 mg Ibrance and the day I am suppose to restart it gets to 1000. Well the sores are pretty bad and not showing signs of getting better especially the canker sore and was pretty swollen last night. The pain I felt last night almost had me in tears and I think I have a pretty high tolerance for pain. I sent an email to my MO telling her I was going to stop the Ibrance because I have 4 days left and I am thinking my ANC is probably too low to heal these things properly. She wrote back and said this:
"You need to stop the Ibrance and not restart until this clears up. You will likely need a lower dose"
I am moving this weekend and do not see my new MO until Sept 10th. I am worried about 2 things:
1. Dropping to 75 mg
2. Not being on Ibrance from today until after Sept 10th???
Please give me any thoughts you all have
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Interesting, Pat!! So, are you taking a PARP1 inhibitor? I guess not needed one yet since you've done so well on everything else?
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Nicole, I know how that feels, I've obsessed when I've had to drop the Ibrance from time to time, it seems like every few cycles my ANCs drop in the 800s and I need more days off (!) Just remember that femara alone is kicking cancer's butt, and for all we know it maybe good to have short breaks from Ibrance, so that the cancer does not become resistant to it.. The lower doses by all accounts are just as effective.Exciting about the move!!
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Thanks kath you are your usual uplifting self and I am grateful. I was of course 2nd guessing that I said anything to my MO but my husband said if I didnt and I stay on the 100mg this could happen more so it's better that I mentioned it. I guess hes right.
Kathy yes I am sooo happy to finally after 6 months being on a couches and air mattress getting us back in our own home. 😊
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Nicole..please try not to stress. There are many folks on this thread that are on 75 mg. Taking a random break is okay. My MO told me each individual metabolizes Ibrance differently and a change of dose can be just as effective. If you go lower and have slight progression, you can always bump up again.
Occasionally, I get the viral herpes sores inside my mouth or lip area. I have a standing Rx for Valtrex, antiviral (1gm) that takes care of it within 24 hours -before it gets bad. I also use Magic Mouthwash, a Rx from your MO and use Biotene to keep my mouth from drying out.
S
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Happy Thursday everyone - well I had my bloodwork done after 7 days of Ibrance 100 and my neugtrophils are their usual too low selves
(.6), so I have to go for bloodwork again Tuesday to check and hopefully they reach the magic 1.0, so very discouraging! I so wish there was a dietary food, or supplement, that boosts neutrophils...When I get the cold sore outside my lip, I take l-lysine during the day for the first couple of days and they seem to disappear without appearing if I catch them at the 'tingle' time. For the occasional canker the salt rinse has worked so far.
Pat, Curious - How do we find out if we are BRCA-1? Does all our genetic type information come from our initial pathology? Are pur tumours still available for testing or did it need to be done already? I have been on Letrozole, Ibrance and xgeva since February 2018, would my genetic makeup change? You ladies are so knowledgeable, and informed, thank you for sharing!
I live in Canada so things may be different?
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Nicolered
I had bad mouth sores this month. I’ve been on Ibrance since 2017 and never had them like this. My doctor gave me Murad mouthwash and I immediately felt relief. All sores were healed in 5-7 days.
It’s a prescription by my Dr office told me not to buy it they have plenty. I hope this is helpful
Tanya
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Nicole, I have sore tongue since started ibrance. It usually started at the end of 2nd week & clear up 1st week of next cycle. I'm on 75 mg as well due to low blood counts. My 3 months scan is tomorrow. Will see!!
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Nicole, I have sore tongue since started ibrance. It usually started at the end of 2nd week & clear up 1st week of next cycle. I'm on 75 mg as well due to low blood counts. My 3 months scan is tomorrow. Will see!!
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