Ibrance (Palbociclib)
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Deanna - When I started on Ibrance, I was taking turmeric (curcumin is a constituent of turmeric, correct?). The specialty pharmacist asked me for every supplement I was taking and looked each one up to see if there was any contraindication with Ibrance. She told me turmeric was fine to take and that a number of her Ibrance patients took it.
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Moissy that's just fantastico!! SO happy for you!!
Onco does not want Dani on anything extra. So it's scary to take something on our own. Did you guys ever hear of New Chapter - Bone strength - it's prescribed for bone strength with calcium slow release, and it ALSO helps with sleep at night.I just had it delivered from Amazon. This is something he allowed her to take. I might take it also, to help me WITH sleep!! Then I also take sleepytime from Celestial Seasonings.
Onco's office this morning is checking to see if Dani should stop today for her 21 days, he says something that she did not take it consecutively and had to skip days bcs of high dosage, so...he is gonna see if she needs to take it for more days, does that make any sense? And now I wonder if i should have asked to drop Dani to 75 right away instead of 100 like she is scheduled for now, and then go through the process again for the 75??
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Mom - If Dani's blood counts can rebound on the higher dose of 100, I would want to go with the higher if side effects are ok for her. I want to be on the highest dose I can tolerate.Most people who are dropped in dosage try 100 before they are dropped to 75.
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I looked up the "Bone Strength" by New Chapter:
http://www.newchapter.com/take-care/bone-strength-take-care
They also have a "Turmeric Force" and other formulations that are listed at the bottom of each page:
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MomATT, New Chapter is/was a premier brand -- especially when they first started. I guess I started feeling less enthused about them when they were bought by P&G in 2012. That may or may not be a valid opinion, as I have absolutely no idea if P&G changed any of their formulations. I'm just prejudice against traditional food conglomerates that buy natural brands. I feel the same way about Burts Bees since it was purchased by Clorox -- suspect that a company that uses chemicals in other products could really care about our health and will produce as natural and high quality product as an independently owned company. But in general, the newer calcium combo supplements have been shown to actually build bone better than straight calcium or cal+mag. I use Jarrow Bone-Up, and a I know there are several other good ones too.
Here's an article on that P&G acquisition. http://www.naturalnews.com/035312_New_Chapter_Proc...
Great news on your scans, Moissy!!!!!!!!!!! So happy for you!
Editing to add a PS to MomATT ~ Quite frankly, I don't know what to think of Dani's onc. It's great that he's thinking out of the box, but if no studies have been done to support taking the drug more than 21 days, I'm not sure how he's going to parse out that info. And I see how frustrating it is for you to always be questioning and second guessing what he's doing...
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Moissy thanks so much it makes me feel better. I would not want the Pharmacyt gives us a hard time if a give us a hard time if indeed we would need the lower strength eventually.
Ellelout that's exactly the one we got. Thx!Hope it helps. Dianne - in the tumeric one I don't see anything that shows that it's dangerous, I wonder what PA would say about it, I will try and ask. How are you doing?
Btw, the Zometa is not something that oculd be done at home right? It's in a form of infusion, not just a shot?
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My question is really - I think Xgeva she used to take the shots herself at home, the last 4 months new Onco switched her to Zometa, but being that now she does need infusions she would prefer not to travel just for the Zometa. So I am thinking maybe she could switch to Xgeva again.
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my oncologist does not want me using any supplements at all. She stated that Ibrance has not gone through testing with any supplements so we really don't know what kind of impact they may have.
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I thought I read there were issues with turmeric and letrozole because of estrogen and liver involvement. Did I misunderstand that
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Singlemom, my onc said the EXACT same thing! Said this drug is way too new and they are still learning about it
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HI Ladies, I am new to this thread. I am on by 2nd cycle of 125mg of Ibrance/Letrozone and had a nose bleed this morning. Has anyone else experienced this? Other side effects I am experiencing...all over aches and pains that come and go, headaches, and of course terrible fatigue.
Glad to have found this very informative thread.
Robin
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rpoole [Robin]
Yes to the nose bleeds from Ibrance. Yes to the headaches from Letrozole. The headaches dimished over time; the nose bleeds did not. I didn't have the aches and pains, but that is a common side effect of the Letrazole.
Hope it works for you!
*susan*
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Robin, this is from WebMD... "Tell your doctor right away if you have any serious side effects, including: signs of anemia (such as unusual tiredness, pale skin, fast heartbeat), easy bruising/bleeding (such as nosebleed)."
I think it's a fairly common SE, but you should report it to your onc, especially if it lasts for awhile or becomes frequent.
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Moissy-great news about your scans-so happy for you!
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Yippee Moissy, Happy Dance for you! (I'm not really with this thread anymore but wanted to check in to see how some of you are doing) And welcome to all newcomers!
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Question for the group...has anyone received a package from Pfizer with a bright purple bag and giant pill case and two brochures on side effects and the reassuring message that instead of 10 months to progression it's 20 months?
I burst out laughing when I saw it...it's certainly not a coveted 31 bag of any sort...
Maybe next they will send a tee shirt that lights up my chest with "GO MBC"
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Yes! Ugh! I got one of those stupid promotional packs from Cigna a few months ago when I first started Ibrance, and I got a second one this month directly from Pfizer! So I have two, if anyone needs one, LOL -- although I don't use either one.
Kathryn, did you get the little Keep Calm cards yet? Quite out of touch, if you ask me, but I'll put up with anything they want to send me as long as their med keeps working!!!
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Oooh...I haven't received the cards yet...something to look forward to having :-)
I spent many years in corporate communications and PR and the cardinal rule was to know your audience...this is a classic case of missing the mark. I do appreciate that they want to help us and they do have a bit left over after we pay $9,500 per month for 21 pills. Feeling sarcastic, but I'll take the extra 10 months to progression if it helps.
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The pill caddy is cumbersome so not very user friendly.
I finally have gotten a cold or something. I feel tired and my nose is runny and I can feel chest congestion starting up and some coughing. Anyone recommend a cold medicine or ones to avoid while on Ibrance?
Thx!
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Thx Moissy for the reassurance! And so glad this is working so well for you. I know it gives us all great hope hearing anyone's great scan results.
Rpoole, welcome.... yes, my 2nd week started the major fatigue and and light nosebleeds. I naturally have aches & pains from fibromyalgia, so I really couldn't say about that part. Small world, I am from Knoxville!
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Thanks Ladies on the symptom input. I called my onco and will be seeing her next Tues for more blood work. The nose bleed stopped and she didn't seem too concerned about it. She said in the future if you have a nose bleed lasting for more than 15 minutes..you should call. I just with I had some energy! I get winded just walking up the stairs! UGH!
Robin
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Mine wasn't a nose bleed just bloody boogers every day. They tried to pass it off as the season and said to take Claritin. Dried bloody boogers. I think not!
Yes I got winded walking up stairs to the library and cleaning a mirror. WBC was below 1 last week but won't recheck until day 14. Start next round on Thursday. Really wish they would check counts again.
Stomach acidy after I eat almost always. On Pepcid. That and the boogers are the most annoying. Beats iv chemo. Now if it works and the fatigue doesn't get worse, I'll be a happy camper.
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I have been on Ibrance and Femara for 3 months now. I have hardly seen any side effects. I am ,though, very fatigued. I want to sleep a lot, but then when I try, I can't seem to go to sleep. I haven't noticed any hair loss. I am scheduled for my first scans since I have been on the Ibrance on February 22nd to see if it is working; The reason the doctor switched me is because I started coughing a lot so he did a chest x-ray and somehow seen that the liver tumors had spread.
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yes that's me exactly. I'm tired but can't sleep so I rest. I never know how much is from the drug or just bc as my sleep is never all night long anymore. Most I sleep solid is 4 hours.
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Laughing here at Iwrite's sarcastic comments about Pfizer's little gifts. How about instead of "Go MBC" on the (imagined) tee shirt, they put Zill's phrase "dried bloody boogers" on it? (Please don't take it wrong. As my grandma used to say, we have to laugh so we don't cry.)
But about the 20 months instead of 10, I like the way my onc put it: It can double your time before progression. Since those numbers are averages, I choose to hope we will get more. So for example, if I was going to get two years just on letrozole, now I will get four. I hope that's not hubris.
I hear you guys about the quest for sleep. I blame letrozole. It gives us magnified menopause symptoms, right? In my quest for sleep I have found that a black silk sleep mask helps in the early morning. And it I have trouble falling asleep at night, I take some melatonin.
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Need advice--I have an upper respiration infection going on. Runny nose (clear), coughing up (yellow/grn) blobs now and then. Chest tightness/heaviness. Temp 99.9-100. Headache. Not bad really but don't want to get worse.
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Ellen, the yellow-green blobs signal infection. I would call your onc and see if he/she wants to RX an antibiotic.
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Deanna- Ok, I will. Thanks
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Get well soon, Ellelou. Ugh, I have a cold now, too. Not how I had planned to spend my week off Ibrance. Will call the doctor if I get a fever.
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Thanks Shetland Pony. FYI-- my MO prescribed a Zithromyacin-zpack, Mucinex DX, Sudafed 12hr (it has pseudoephedrine in it so so they said only take in once a day in the AM-not great for folks with high blood pressure). And I have to go get bloodwork done this afternoon which is a cinch for me since I live across the street from the hospital.
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