Ibrance (Palbociclib)
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Crazeejane- sending you hugs! I can relate all too well about your feelings that you experienced during your wedding anniversary. Right now my physical affects are minimal but the emotional pain can be brutal at times. I do my best to be in the “here and now” but there are times this shadow appears and I wonder will this be my last year doing this, etc? It’s a weird place to live. The thought of having to leave my DH is the worst and then thoughts of him sharing his life with someone else is just brutal! I do my best to keep living and participate in life but really no one can understrand this emotional, pain unless you are also experiencing it. I wish you well Crazeejane
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Kitt and Suzy, if you are still interested in the Advocate My Meds resource for help with the application for funding from Pfizer, I have had several more exchanges with them. Mostly good. I advise that you not look at their reviews on Facebook AFTER giving them your credit card number. A little distressing. They are slightly sleazy but not slimy like Pfizer. You can apply directly to Pfizer which may be harder or easier. I don't know. The phone number for Pfizer given to me by my MO's office is 800-879-3477. Getting all the documents together is a pain but can be done with time and patience. I attached them all to an email to them on Monday and got an email, text and phone call from them on Tuesday. Getting my MO's person to get on her part may take a little nudging. I drove down there yesterday with the form they had to fill out even though I knew it had already been faxed to them. Nudge, nudge. We'll see how it goes.
PM me if you want more info or details. BTW, you can also snail mail or fax the documents. 48 hours to get into your account with fax or email. 7-10 days with regular mail. 2-3 weeks for approval after documents get to Pfizer. What they don't say is how much time passes in between. After they have all your documents, how long does it take them to send them to Pfizer? That is the mystery time.
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KatyK-
"I wonder if this will be my last year doing this, etc. It is a weird place to live." SO TRUE. The emotional pain of all this is worse than the physical pain. Sometimes I just think that what we have to go through, the thoughts we have, are so weird. I feel like I have been dropped into some strange new land.
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I knew the feeling Crazy Jane. I did a present, sewing some cloth to a friends baby shower. Thinking of my own daughter with tears falling. She is only 14 and she needs her mum.
Today I got good news. They planning the gamma knife. I can walk much better with the help of cortison and the want me to start lowering the dose. Good0 -
thanks Jaycee for the information. And thanks for staying on top of this! Kitt
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well I finally joined the club this morning! Took my first dose of I/L. Yesterday I received my 1st Lupron shot and should have had Xgeva, but the insurance company only approved an infusion Zometa (I now am so very sore and achy, kinda feel like I shivered all night long!). Already called the Onc’s nurse to let her know, hopefully she has already sent the info to the insurance company so that on 12/28 I get my 2 shots and not an infusion. So far so good except for the achiness.
Again thank you all for sharing and listening
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RandyRat, I get a Zometa infusion every 3 months. It is a quick drip and easy to take with almost no side effects so I wouldn't fear it. Only takes 15-30 minutes with the addition of saline first and after to flush it out. They put it into the back of my hand or my arm. If you are an easy stick, I wouldn't fear it. It is not like chemo.
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The first zomata infusion I got caused me to feel like I had the flu for 1-2 days and I had some limited bone pain. Those side effects no longer occur but the infusion affects my mental state (more anxiety, even crying) and causes me some pretty good fatigue. I discussed this with my MO at Huntsman Cancer Institute and she recommended I take Claritin a few days before and after the infusion as that may help alleviate these SE for me. I was told locally to take Claritin for bone pain but not for other SE. I get my next infusion in about ten days so I will try the Claritin and let you all know if it helped. And of course some people experience little or no SE from zomata. I’ve gotten to hate the stuff but I’ll keep taking it and just deal with the SE.
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Into/Katy: thanks for the infoand yes it kinda feels flu-like. Yesterday was my 1st experience with the Infusion Room, and hopefully my last. My Onc actually wants me on the Xgeva and not the Zometa . . . Insurance trying to keep costs down by not approving Xgeva was the cause, but it's good to know that the side effects may ease if the insurance continues to play doctor and continues to deny the drugs my doctor wants to treat me with, it won't last long tho as I use up all my positive vibes staying cheerful for my children, and am not afraid to fight Dirty when it comes to my care or that of my families.
. Hopefully the Claritin will help with the SEs, all we can do is take it one day at a time
Have a wonderful weekend everyone
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Hi all and welcome to RandyRat. I hope you are able to get your Xgeva. Sounds like you’ll make sure the insurance company takes care of that!
So today I went in for my follow up opthomologist appointment after my vision test optician noted that my optical nerve on my right eye had blurred edges and told me to get it checked out.
I went to a different doc in this group a few years ago for dry eye. They gave me Restasis - it didn’t work so I didn’t get back. So this new guy did a thorough examination, took pictures of my nerve, noted the elevation and then told me that brain tumors often causes an elevation of the optic nerve. Asked when my last brain MRI was (May). I started to freak out a bit at this point and asked what else could cause an elevated optic nerve. He said it could be congenital meaning I’ve had it since birth. So now I’m practically in tears when the nurse looked through my file and noted that I was there in 2016. Doctor says pull up the notes from her visit. Apparently the Doctor who saw me for the dry eye noted that I had an elevated optic nerve that was likely congenital.
So the doctor concluded that if it has been elevated since 2016 and nothing was found on a brain MRI in May, then clearly this was congenital and thus not an indication of cancer in my brain.
So I went from hyperventilating to extremely happy in a matter of five minutes. The nurse asked if she could give me a hug when the doctor left - which was sweet and she is now my favorite person on earth.
Just another ‘day in the life’ ladies!
Love to all,
Lauren
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Lauren what a terrifying roller coaster. SO glad you had a happy ending!!!
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Oh, Lauren, I'm so sorry for that moment of panic but thankful for the happy ending!
PatGMc
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Oh my gosh Lauren what a nightmare.....thank heavens it had a good ending but seriously how awful!! Hugs
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I just started Ibrance and Flasodex this week. So far I feel nothing, except that cold I caught while traveling. When should I start to feel tired, nausea or any other things?
Thank you for any advise
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Lauren: so sorry about the emotional up & down & up at least the original doctor made decent notes, and that the staff was compassionate. ((Hugs))
Law: there are some posts several pages back in the thread regarding others ‘side effects’ appearance; it seems to take roughly about 5 days for the medicine to ‘build-up’ and for folks to begin to notice different things, but remember everyone is different, we all metabolize this seemingly 1 size fits all drug differently. I’m wishing the best for both of us & minimal se’s . . . I’d go for none but doesn’t seem Luck is on my side :
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Hi Law
I've been very fortunate on this combo with little to no side effects. Praise God. Today is my last Ibrance of my 2nd 21 day cycle. This last week, I've felt a lot of fatigue but I don't know if that's cause of the Holiday and the much colder weather. I'm very much a summer person and usually don't do well in winter. I've had three blood draws and my WBC and RBC's have been very good. My onc. is happy with them. I feel that you'll do just fine on this combo. As everyone told me, make sure to take the drug with food. I've never had stomach upset. I pray that this will work very well for you and welcome to the group. I'm new here myself and mostly a silent stalker lol. But I feel close to the folks on this thread.
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I had a bad experience with Zometa. Knocked me for a loop, plus raised my Creatinine levels over the top. Had daily infusions for dehydration. This went on for a month or so. Finally, on X-Geva (monthly) for several months ...no problems at all.
Hope
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Hi all,
Can you/do you drink alcohol when taking Ibrance. If you do occasionally drink is it just during your off week? I asked my doctor's office if I could have a glass of wine and the nurse said they recommended waiting 4 days after taking last Ibrance pill! (so last 3 days during off week). But the pharmacist said no more than 2 drinks on occasion is fine.
I wonder why the doctor's office would recommend waiting until the 4th day. Wish I asked. Today is my birthday and I really would like at least one drink at my bday dinner tonight. But I don't know if I should.
-Ady
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Hi Ady
I am on cycle 28 I/L plus monthly Xgeva and eat and drink whatever I want. I feel great with very little fatigue - just living a normal life between bloods, scans and Onc apts
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hi! I also eat and drink whatever I want whenever I want.
I don’t drink a lot but I do have a couple glasses of wine and maybe a beer once a week. Sometimes I have one cocktail if I’m out with friends. I’ve never loved being hungover so I always limit it to two drinks max, and at this point, two is almost too much for me.
Last night I went to the 76ers game and I drank one delicious crispy IPA beer. I am on day 15 of my Ibrance cycle. No issues here
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Hi Chico,
Do you drink alcohol as well during the 21 days on Ibrance?
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Ady, of course your doctor takes precedence. Speaking only for myself, I have a drink, or even two on occasion. I know not to drink when taking tylenol, so that's what determines whether I have a drink. If I'm hurting, I'll choose tylenol. Alcohol can enhance hormone positive cancer so I don't drink much at a time or more than a couple of times a week, usually less. I enjoy a drink for my birthday and other special occasions or "just because" 😊 I've been on Ibrance since the end of March and don't notice if I'm in the off week or not when having a drink.
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That's great to hear, Philly. Did your doctor say it was okay to drink while on Ibrance? I wonder why my doctor recommended waiting 4 days after my last ibrance pill.
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Yes Ady I drink whenever I want and I am also on a trial and no one has said not to drink. To be fair I am not exactly a big drinker but I have a drink 2/3 times a week and more if I want.
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Please don't drink if you're on any pain medications. It's way too easy to lose thought control and drink just one too many. It will kill you. Drinking brings on depression. I speak from experience. I had my last drink in 2007 and I"m only still here by the grace of God. Blessings to all
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I am very careful if/when I drink and I don’t mix alcohol with medications that like pain killers or anti-anxiety medications.
My docs (both my MO and my psychiatrist) have said that (for me!!) having a drink is okay.
However, we are all different. Some people are alcoholics and/or have the addiction gene and can’t control themselves. Some people don’t understand/have the knowledge of what is okay to mix with alcohol.
In general, I live an incredibly healthy lifestyle and I don’t “go out drinking.” I have an occasional glass of wine or two if the right occasion surfaces.
Always wise to know your limitations.
If it were me in your shoes, I would call or email my MO and ask them why they would say wait 4 days. It could have something to do with your personal medical history and liver function. Would be very good to ask
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Yes, I'm kicking myself now for not asking her why to wait 4 days. Now it's too late, they won't respond until Monday and my birthday dinner celebration is tonight.
I'm pretty sure my liver is fine. The way the nurse worded her response, dounded like it was general recommendation that they give to all their patients.
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Response from Dr's office: "Typically we say no or very limited to drinking alcohol while on Ibrance. However if you have going to partake in a glass here and there, we recommend it to be 4 days after your last Ibrance pill. So it is OK during the last 3 days of your off week."
Darn now that I read it again, I'll just sacrifice and not drink tonight. Oh well, another time.
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Lauren the eye doctors nurse is my new favorite person. I’m hugging with y’all me three!
Tanya
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Hi Ady
It was my birthday last Monday so with or without the alcohol wishing you as lovely a day as I had. X
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