Ibrance (Palbociclib)
Comments
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Sandi- So sorry you need to move on to Xeloda, but hoping it does wonders to get your liver back in line.
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I say we take a cue from Iwrite on her hope that Xeloda gets Sandi's liver in line........We'll all Line Dance with her!
Nobody said Dancers necessarily need Ibrance to heal so here we go! Somebody pick out the music.
Love from PatGMcGoingLeftWhenYouAllGo Right!
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Thanks everyone. I was sad to store away my Ibrance/Letrozole pill container. The good news, my scans today show no bone or lung mets..I will take any good news. On to Xeloda. Scared.
PatgMc, you have the best attitude. Curious - thinking of your brother in law.
S
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Hey, Sandi!! Xeloda is going to be good to you, I just know it! This COVID crap really shows how viruses and our immune systems can kill us way faster than cancer can.
We'll try to chill out and do what we can to get thorough this moment, and hopefully there is a barrage of good news for us on the other side... Stay cool
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I have a nomination for the official Ibrance dance as suggested by Pat McGreat , some subtle moves- toe taps , hands in pockets. It's so unlike the usual music video, it makes me smile.
https://www.youtube.com/watch?v=1HU7ocv3S2o
Hugs to those facing scans and changes in medication,
everyone have the best Easter you can, XX
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Nice one Denny! We’re so sniffy about Eurovision in the UK aren’t we? This onealso made me smile and could easily be danced in our living rooms!
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Quick question: Is Ibrance only for first-line treatment?
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Woodlands- did I read correctly that you have DCIS stage 0 and they put you on Ibrance? Very surprised to read that. I thought it was for advanced stage or recurrent bc only.
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MaureenB, Woodlands has bone mets de novo.
Thank you everyone for a great send off! Three years and 3 months and it wasn't that horribly bad (fatigue..ugh).
Wishing everyone the same success!
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Ibrance Newbie Report:
I'm one-third of the way through my second cycle, still on 125 mg, with noticeable tiredness the only consistent SE. I had some bleeding sores in my nostrils, but they have healed. Sudden, explosive diarrhea hit Wednesday night, but could have been the result of too much Passover wine at various online Zeders we "dropped into" during the evening.
This week I had an online visit with my new PCP instead of my first physical since meeting her in October. I conveyed to her what I know about Ibrance and was happy to see her looking it up. She is concerned about my ongoing anemia (which she measured in October and of course has worsened now) and told me that my onc's office had yet to send her any blood tests or scan reports, even though I asked them to do so in October! I told her to call them, as clearly I have been ineffectual. The practice is small and now working with a minimal staff, but that wasn't the case last fall, dammit.
However, spring is here! The daffodils and camellias have faded, but the iris are blooming and the peonies about to emerge in all their gorgeousness.
I'd welcome any tips on Ibrance. So far, so kinda-sorta good.
Tina
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Hi, Tina,
For the first few cycles on Ibrance, I had some terrific issues with my nostrils -- stuffiness, bleeding, rawness, etc. Some kind folks on here recommended using any or all of the following: saline nasal spray, humidifier, nettipot. I used the first two (really don't like nettipots) and either they helped or my body just adjusted. But that lasted maybe up to my fourth cycle. I only had diarrhea maybe 3 times since I've been on the drug (think I'm not in cycle 8 or 9? have lost track) and never figured out what the problem was. For me, it's been more of a constipation issue. The tiredness for me is pretty cyclical -- most months, it is very noticeable from around day 7 or 8 on until the end of the pills. I feel pretty good the week off. I also have experienced from time to time shortness of breath when climbing stairs, but it goes away pretty quickly.
And yes, I've had the same problems with getting bloodwork to my internist (or CT scan reports or the like.) Supposedly it was fixed, but the next time I went to my internist, she said that things were coming in, but very piecemeal. I usually go to those appointments with my latest bloodwork and test results in hand -- can you pull them off of the patient portal and forward?
Glad that things are going okay.
Bev
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BevJen,
Thanks for the input. Yes, saline nasal spay helped along with judicious application of Aquaphor.
I will try to figure out how to pull the reports off the patient portal and get them to my PCP.
Tina
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Tina,
The humidifier helped most of all, placed in my bedroom.
Also, it may be possible at least in the short term to give your PCP (if he/she is not in the same portal network) access to your portal -- they probably don't want to be handling a lot of paper now.
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Lark5000: Ibrance was approved based on trials that used it as first line treatment. So, depending on your country, and your oncologist, they may permit it for second line treatment or not. Here in Canada, it is approved only for first line treatment of non (immediately)-life threatening metastatic hormone receptor positive breast cancer. My wife had xeloda first, for approx. one year, and was able to get Ibrance on a compassionate basis (prior to it being approved here), and its worked for her. So, despite the rules, it can work well outside the initial basis under which it was approved.
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I just received a phone call from my onc office and they have cancelled my Zometa until further notice due to the Covid-19. Thought this might happen. Just an FYI.
Stay well friends.
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Dumb question about the suspension of the bone strengtheners - is it due to the risk of osteonecrosis or does it cause a bigger issue with immunity? All the dentists are closed here so if you have something develop its a big problem.
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Might be based on risk of covid-19 infection. My MO wants me to stay away from my hospital, a covid-19 treatment centre, so I skipped my blood draw there this cycle. On Thursday I did get my Xgeva shot that's done at a local clinic that doesn't treat sick patients at all. It's small, and I was the only patient at 7 pm. The clinic doesn't draw blood.
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Sondra, my MO didn't want me to come to the hospital because of the risk of Covid-19. I have been on if for almost 4 years anyways so missing one dose of Zometa won't hurt me.
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Ah right - well that makes sense. I still have to go into my hospital though for blood draws and Zoladex injections and meds so I guess I will see what the MO says on the check-in call on the 20th which is a few days before all of that happens. Maybe they were waiting to see how this pandemic was progressing and if the hospital was impacted, etc.
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Good afternoon my fellow muffin cutters
I finished cycle 5 at 125mg last week. The sores on my tongue even at the end of my week off were so bad I asked for an extra week off so my mouth could heal before it gets hit again for cycle 6. Just awful. I noticed as I go forward with Ibrance, fatigue is more of an issue, even minor shortness of breath that goes away. Of course there's that whole gas thing, that herd of elephants never wants to stop following me around. MO withheld Zometa last month indefinitely, mine had switched to once every 3 months instead of monthly. I hate Zometa, makes me feel like I've been hit with a mack truck for a couple days afterwards so I guess its okay to be able to skip that, although I'm slightly concerned my increased bone pain is because of a lack of it. Could be the AI, could be the cancer...ugh. Speak with palliative care soon to discuss pain management. I think it might be time for pain meds, tho MO has expressed not wanting me to be on them longterm and my desire to avoid them. MM has not helped me. Have run through just about every other non narcotic option, maybe palliative has something up their sleeve, lidocaine patches perhaps?
Came across this story, if you replace beans with Ibrance, this could be a typical night for us
Take care ladies. I'm hoping those of us with rising TMs will be able to get answers in a month or two. Hope everyone is hanging in there as best as one can during all this mess. I think of you guys often and know I'm not alone with the thoughts, challenges, etc. "During lunch at work, I ate 3 plates of beans (which I know I shouldn't). When I got home, my husband seemed excited to see me and exclaimed delightedly, "Darling I have a surprise for dinner tonight." He then blindfolded me and led me to my chair at the dinner table. I took a seat and just as he was about to remove my blindfold, the telephone rang. He made me promise not to touch the blindfold until he returned and went to answer the call.
The beans I had consumed were still affecting me and the pressure was becoming unbearable, so while my husband was out of the room I seized the opportunity, shifted my weight to one leg and let one go.
It was not only loud, but it smelled like a fertilizer truck running over a skunk in front of a garbage dump! I took my napkin from my lap and fanned the air around me vigorously. Then, shifting to the other leg, I ripped off three more. The stink was worse than cooked cabbage. Keeping my ears carefully tuned to the conversation in the other room, I went on releasing atomic bombs like this for another few minutes. The pleasure was indescribable!
Eventually the telephone farewells signaled the end of my freedom, so I quickly fanned the air a few more times with my napkin, placed it on my lap and folded my hands back on it feeling very relieved and pleased with myself.
My face must have been the picture of innocence when my husband returned, apologizing for taking so long.
He asked me if I had peaked through the blindfold, and I assured him I had not.
At this point, he removed the blindfold, and twelve dinner guests seated around the table, with their hands to their noses, chorused, "Happy Birthday!" 🎂0 -
Rabbit - Great story! For mouth sores, I highly recommend gargling with a weak solution of hydrogen peroxide with a bit of peppermint oil. It briefly stings with open sores, but it helps numb the pain and hastens healing. Regular use keeps the mouth sores away.
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Miss Rabbit...🤣
I went down to 100 mg because of mouth sores/muscositis, but I still get it. Also, I've been more tired again lately. However I don't really sleep the best.
Has anyone had an increase in Inorganic Phosphorus on their blood work? Mine is right at the high limit this month at 4.5.
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Here is a link to 'magic mouthwash' , it contains a recipe if you cannot get it from your pharmacist. I hope it helps mouth sore sufferers.
It was posted a while back, by a member who knows a pharmacist, sorry I did not save your name , but thank you anyway.
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Denny's link clickable, I hope.
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Thank you denny for the recipe/link, serenity for the mouth sore tip and jaycee for the clickable link (the clickable link works!) I'll give both suggestions a whirl!
Out of curiosity, anybody get the new Ibrance tablets in the blister packs yet?
I have noted my hemoglobin is edging close toward the high side of normal - I know low hemoglobin isn't good, but what does it mean if it goes high? Marrow? Could that be why my TMs went up? Oh boy.
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Radagast, I received an email from Pfizer that the blister packs will be available in April. I am unsure why I received it, but there you are!
Happy Easter everyone.
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I received a shipment in April. Capsules.
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Radagast, if I had a high side of normal for hemoglobin, I would be dancing..
What does MO say?
Also for TMs..watch the trend..that is what is important.
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RadagastRabbit- your story had me laughing 😂 Much needed! My hemoglobin runs on the low side. MCV and MCH run high...anyone else?
Happy Easter to all! Thankful that my rising TM were stable this month and we will continue to treat as usual 🙏. Approaching 2 years with widespread mets. My April Ibrance 125 came as capsules.
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My wife is scheduled to start Cycle #11 later this week. She had an appointment in her MO's office for bloodwork and consult on Wednesday. Well, the office is closed down so she has to go to LabCorp for the blood work and then do a tele-medicine visit with the MO. Hopefully, the LabCorp bloodwork will be well coordinated with her MO office (I'm skeptical).
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