Ibrance (Palbociclib)
Comments
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Cure-ious--- Thank you for your knowledge and explaination. We are blessed to have you here to help us through the scientific issues of all this. Forgive my stupidity, you said "sequencing" after progression to see what has changed. What does sequencing mean? What does that include----biopsies, lab tests, etc.??? I just want to be able to communicate with the docs (my MO and 2nd opinion MO) when I have progression and be on the same page as them so I know what comes next.
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airlinegirl - i take 20mg of melatonin every night (which has shown great responses in being anti-neoplastic!) and I also use a small amount of an 8:1 THC to CBD. I usually pass out right away. Last night I couldn’t fall asleep for some reason. Sleep is wonky for sure but I do sleep much better with these helpers and don’t feel hungover from them like the OTC sleep aids and prescription sleep aids make me feel.
Once in a while I take a Benedryl so that I sleep solidly through the night.
Sleep IS soooo important!
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hi friends, wanted to check in. I got a g-tube placed in my belly so I can start getting nutrition. Oh mama is it sore. But that’s the first step to getting home.
Will write more later about findings. Forget what I wrote earlier about esophagus, it’s something entirely new. I feel like I’m reading a map through a straw with a strobe light.
Jaycee, hoisted on my own petard! But point taken.
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Jaylea, Hope the soreness eases soon and that you will be going home shortly. We look forward to hearing your updates. Glad you will be getting the nutrients you need.
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Jaylea what a roller coaster you've been on! I was thinking back to you having trouble with your vocal chords and wondering if that was one of the first signs of your esophageal troubles. I'm very sorry you are going through this and thank goodness for enteral nutrition - but I am sure it does not feel amazingly comfortable at all
I wish I could come there and magically heal your esophagus and get it back up and running so you could solid foods ASAP. I will keep imaging you doing this in my mind and if positive thinking can help, then let it be so for this.
Virtually sending hugs toyou,
Brenda
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Jaylea, Imagine how many of us have been encouraged by your Petard!
I'm holding you close to my heart today and every day.
Love from PatGMc
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Jaylea- thinking of you today. Yay for nutrition- I think that will make a big difference in how you feel!
I had my second opinion at UCSF- I am glad that I studied a lot for this appointment- She did not talk down to me at all. Anyway the bottom line is pretty much exactly what my MO said. I am not eligible for any studies since I don't have "measurable disease" being bone only, and some of the studies are with fulvestrant, which I failed and are placebo controlled. Also she said that anything a Foundation 1 or guardant said right now would not change her mind about her current recomendation for AA. But, for the next treatment it might.
So, in response I ate a lot of ice cream to prepare for the low carb diet I will need- to deal with the blood sugar issues it causes. Maybe fried chicken tomorrow since cholesterol is another issue with this drug.
She did call me young and healthy (per her I look under my stated age)😉
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Jaylea, reading a map through a straw with a strobe light, entirely describes your situation right now! Hopefully you can at least get rid of the strobe light for the first step! Stuck in the hospital is not good. Thinking of you and hope you have some decent reading / listening material? Any suggestions everyone? Without that help from each other we are stuffed!
The only book which made me laugh when in hospital was The Life and Times of the Thunderbolt Kid by Bill Bryson. Given to me by a colleague who had been in a similar situation. I thought at that point I’d never laugh again.....
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Lakewoman,
Your resident dental specialist is here to chime in on your tooth situation...
Your chipped tooth could be from anything as you suggest. The most likely cause of chipped teeth though, is wear and tear over time (not necessarily age
). Think of walking around the house, sipping on a cup of morning joe...one little misstep and the mug bumps a front tooth...ouch...minor little bump...no obvious damage...no broken tooth...no pain the next day...whew, what a relief.
Some people have habits like chewing ice, tearing things open with their teeth, clenching/grinding their teeth, etc. Teeth functionally touch each other around 17 minutes a day, total, when utilized for chewing, speaking, etc. More than 17 minutes a day from such "parafunctional" habits can cause excessive forces on teeth and accelerate this mini-cracking process.
But these unavoidable, non-obvious little injuries to the tooth/teeth are cumulative. Outer tooth structure is enamel and is similar to ceramic. Envision a favorite vintage plate or cup with tiny cracks in it. Over time the cracks stain, start to get bigger and additional cracks can appear especially with use. Teeth are similar and these tiny microcracks can turn into visible cracks we call craze lines (not to be confused with crazy lines...). Once this situation exists, the tiniest action like biting into soft bread or even jello, can cause the microcracks to coalesce, enlarge and turn into a full-blown enamel fracture. Oila!!! Tooth parts start falling off.
I have not seen any data suggesting I/L exacerbates normal tooth breakage behavior but this does not mean it is not related.
I hope this helps answer your tooth question a bit more. I cannot claim to be an expert in dental oncology but dental and periodontics have been my thing for the past 31 years.
Gumdoctor
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Jaylea,
Thinking of you today. And every day. Hoping g-tube is settling down for you.
Gumdoctor
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Gumdoctor. I have an appointment with my dentist next Monday to confirm possible osteonecrosis of my mandible. My gums bleed when I brush my teeth and I wake up every morning with "orangy" drool on my pillow. I brush my teeth 3 x a day and floss once a day. I know my gums have been receding over the years. So, what do they do for ONJ?
Hope
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I just read in another post that Zarvoka has passed. She was on this post for a long time. Bless her family. She had so much knowledge to give and shared it constantly. I am heart broken.0
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I am so very sorry to hear that she has passed. I always admired her enthusiasm in tackling this damn disease. May she RIP.
Hope
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So sorry to read of Zarvoka's passing. She was one of the first to inspire me on this thread. May her family find peace and her legacy extend far beyond her presence.
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Jaylea I hope you’re getting closer to going home.
RIP Z
Tanya
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Although I have not been on these boards for long, I read everything Zarvoka posted. I so admired her courage, her intelligence, her sharing of knowledge and encouragement. The way she died, she did it her own way in searching for answers for all of us. My hope is that she went easily and peacefully. And that her daughters and husband find comfort and solance from the loving memory she left them with. She's with our Lord now-right where she belongs.
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I am so surprised and sorry to hear of Z’s passing. I felt sure she would be with us a long time as she was so relentless in looking for a cure and treatments. Her research helped all of us I believe. Praying her family can find comfort knowing she is at peace and no longer in pain. May God watch over them all.
Faith.
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I’m saddened and sick about Z’s passing. She was one of the first to welcome me, and she always took time to fully answer questions, with knowledge and with patience. She was endlessly brave and determined to fight this disease, whatever it took. We have lost a lot
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I've thought of Z so often lately. She was such a force, always intent on finding something new, something better, not just for herself but for all of us. I'm glad we know that every life is a complete life whether it's a few years, a hundred or something in between. We spend our years learning what we need to know to live happily and, when we can, helping others to do the same.
God bless Z. May she rest in peace.
God bless all of you. May you dance today in her memory. Twirl once for Z and once for the new folks who will find their way here.
Love from PatGMc
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Thanks gumdoctor ..You covered so much for me..US!..Very kind and thoughtful and yes knowledgeable you are..I believe bones and teeth connected and thus I thought about ibrance..BUT if I were to be really honest I think it is how much I enjoy eating licorce that caused it!!! Since this happened and I have to watched temporary crowns SO I am cutting it in small pieces..One more question..?As all of us should guard against infection my onc has me have CBC done day or two prior to rx..like root canals extractions, crowns..and for me my onc even says cleanings..wonder if u think necessary for putting in permanent crowns??? I know I could call and ask but interested in your thoughts..She does major blood work when I see her every month..But when crown was done on a Friday I had just had blood work done on a Tues...so since neutrophils and WBC ok I played the old nurse that I am and went with procedure to be done..My onc very much sticks with protocol..but perhaps cause she is ovarian cancer survivor! Bless her..
I did not know the woman who died but for all if you and her family I pause to give thanks she is not suffering..How old was she..? TY again resident gumdr😁
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Have any of you had some sort of dermatitis of the face from ibrance? My wife has red spots all over her cheeks, chin, and is really red between her nose and upper lip. She has seen a dermatologist, who diagnosed it as bacterial, and had prescribed her 12 weeks of oral antibiotics. She has just finished her first week, but no change in condition. We are both ready to somehow blame it somehow on her treatment. She had rashes on her trunk area for 8 months, but oddly, they recently went away, and now she has this on her face instead. What the heck?
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Husband, I'm so sorry your wife is dealing with that. I've had an itchy rash that lasted for a really long time (lower legs/feet) and others that were short-lived. One specific place on the back of my right arm itched for a couple of months but seems to have stopped. I have one red spot on the top of my foot that has itched for most of two years. I decided it's there to assure me I'm not getting a placebo!
One of my oncologist's patients had a rash from head to toe which was attributed to Ibrance.
I hope the medicine works and your wife gets better soon.
Love from PatGMc
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dear Husband11, I did experience red boils on my lower back and torso while on ibrance or Afinitor ( I'm not sure)
The problem was resolved quickly by a cream called Fluocinonide 0.05% prescribed by my MO.
From your description, I strongly believe your wife is suffering from the same condition. I only applied it a few times...and it quickly resolved the problem...
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12 weeks of antibiotics sounds really intense! I hope it works. Can your wife take probiotics and eat a lot of fermented foods while on the 12 weeks to combat the antibiotics killing off everything in her gut flora?
When I started all the meds (Ibrance letrozole Xgeva and Lupron) I got these two HUGE red itchy painful welts on my arm. It was very disconcerting. I went to the MOs office and they all seemed perplexed by it too and told me to take benedryl. That went away in a couple weeks and then I had a couple more on my legs, but not as big. Then I had a couple very itchy blisters on my chest right in the middle. They developed white heads on them. I used an antihistamine cream on them. And eventually they went away. And thankfully nothing since then.
It sounds like your wife’s dermatologist may think your wife has some sort of folliculitis? I have friends who have had that and were prescribed antibiotics and steroid creams. I am not sure how effective they were.
From my point of view, when the skin erupts with these kinds of things, I consider the liver physiology. These meds take a strong toll on our livers and if/when the liver is a bit overloaded, then excess can express through the skin. What is your wife’s diet and exercise life like? She may want to consider a clean food diet and bit of a detox and up her exercise regimen to help move things along? Is she constipated? Just some thoughts!
Hope she feels better and this resolved quickly!0 -
Husband I was just on Ibrance for 4 Months but, before I started, the specilast (sp) pharmacist told me to "expect" a rash. A SE that most patients get while on Ibrance. Thing is, I never had the rash. Just my experience.
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For those who haven't found it, thread is a honory thread for Z. Now it's hitting harder and harder.
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What is the name of the thread for Z, please?
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I found a thread simply entitled "Zarvoka" reporting her death. Hurts so badly
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Sorry, I'm reposting, total brain fog.. it's simply, Zarvoka.
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Zarovka (Z)
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