Ibrance (Palbociclib)
Comments
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Hi Tanya,
Thanks for the tip. I also get really bad sores which make it difficult to eat. I've tried several recommendations, but still get them. I will see my MO in a couple of weeks and I'm going to ask her if she has some samples.
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Divine, you've gotten so many good responses but here is my first reaction. You posted this:
"The onc is saying going from Ibrance/Aromasin to Ibrance/Faslodex is called palbo after palbo. (Palboceclib being the drug name of Ibrance). She said since the Ibrance/Aromasin combo showed progression after 5 months only, that the palbo after palbo is a clinical trial and I needed to go six months to show progression. Yes, it sounds screwy to me, too, but that is as she explained it."
Why is it that we accept "screwy" from our doctors? (I include myself.) We don't accept screwy from our spouses, our kids or our plumbers. Or anyone else. (Maybe the dog gets away with screwy.) So there is something wrong with palbo after palbo but not an AI after an AI after an AI? What about resistance to your AI? My former MO waited six months on I/L to scan. Maybe you need more time on Ibrance. But when you are sitting in front of that doctor, those questions don't reach your lips or even form in your brain. It is maddening to me but I do it, too. By the time you are finished waiting, getting blood draws, waiting some more, anxiety raging, your brain is in a altered state. Mine barely functions at all. I think they know that and know that they will get away with screwy.
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Devine- I posted the same concern re the AI vs the Faslodex on the Verzenio site- so we all seem to be concerned about this. I wonder if your MO has some issue with the fact that the Faslodex is shots? Maybe he/she had some negative experience with them. All docs can have blind spots in their opinions, due to their patient experiences
As to second opinions, I told my MO, I preferred she hear it from me, that’s when she told me she had been at MD Anderson for 10 years before moving back home to the Bay Area. I had no idea, she had done a ton of second opinions herselfin her career. She was all for second opinions and it is a wonderful feeling to have the second opinion doctor agree with yours. You can always say that your family is clamoring for you to do it.
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PatGMC,
I am on Medicare and plan to change my Part D from the $29 per month to $80+ because of Ibrance. For 1 year I get free Ibrance from CVS . I would like to know how you get free Ibrance from Pfizer. Please advise
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My TM went up from 255 to 267 after 11 days on Ibrance & 1 shot of Faslodex and xgeva. I read several ladies posts that green tea affects Ibrance so I have stopped taking it. I hope my next Lab results will be better
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Wait! Green tea?!! I've been drinking it because I thought it was good for preventing cancer. We need a list of things to avoid.
Probably a stupid question, but is drinking green tea and taking green tea extract considered the same thing?
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I have been researching this a bit now since I'm worried because I have been drinking green tea. I'm thinking maybe it's the Green Tea Extract (GTE) that is the issue.
This is from Memorial Sloan Kettering:
- You are taking palbociclib: Green tea extract may decrease availability of palbociclib, thereby reducing its effectiveness.
- Palbociclib: The bioavailability of Palbociclib decreased following administration of green tea extract in a murine model (79). Clinical relevance has yet to be determined.
Then I read this:
"An average cup of green tea has a good amount of polyphenols and catechins, and it is also the highest known concentration of EGCG (the world's most powerful anti-oxidant). Even with these concentrations being considered very high, it still only makes up roughly 2% of your total cup of green tea. This is why when the Japanese enjoy 9-10 cups of green tea per day, they are getting great health benefits with minimal risk. In addition, EGCG is water soluble, which means that if you consume it with an appropriate amount of liquid (like a cup of tea), then excess EGCG that your body cannot use at the moment is flushed out.
The problem with these GTE supplements is that they do not have this built in safety feature; build up can occur within the body since the liquid may not be present to help clear out any excess EGCG. This is doubly dangerous when you realize that most of the supplements on the market that are GTE's often contain approximately 500mg of EGCG per capsule."
https://www.thewhistlingkettle.com/a/info/blog/green-tea-extract-benefits-and-side-effects
This makes me feel much better about drinking green tea, but I'm still going to cut down on consumption.
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Irsreyes, Pfizer has an application for their patient assistance. My oncologist's nurse does it for me so you might try that route or do it through the link below:
Best of luck!
https://www.ibrance.com/financial-support-resource...
Love from PatGMc
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irseyes,
I, too, am on Medicare and also on Ibrance.
What Part D program are you switching into? I have an express scripts plan currently that costs me in the $25 range per month, but I'd surely pay $80 per month to get a year free of Ibrance.
TIA.
Bev
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BevJen, why not ask your oncology office about applying to Pfizer? You will fill out part of the application and your doctor will do the rest. They will fax it in and you'll have an answer within days. I would first apply to the Co-Pay Assistance Foundations. I may be wrong but I think I remember that you have to be turned down there first. (Sorry, my memory ain't what she used to be! Three years of dancing will do that to a girl!)
Love from PatGMc
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Pat,
I do not qualify. Have exhausted all of those avenues a month or two ago. Jaycee even found me some foundations to apply to, and it didn't work. So this would be a better option for me right now because I'm still working, but on Medicare. I'd gladly pay more for my Medicare Part D and have the Ibrance covered for a year!
Thanks for thinking of me, though.
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BevJen, it makes me crazy that people have to pay so much out of pocket for these drugs. My oncologist gets downright indignant about it. You might ask your onc's nurse if anyone has turned in leftovers of Ibrance.
How many mgs are you taking?
Love from PatGMc
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Irsreyes my TM's went up a LOT my first month on Ibrance. Then they dropped a lot. Now on months 4 and 5 they're just dropping really slowly each month. I wish they'd move more quickly! Anyway I wouldn't worry too much about this. My MO said that the markers can wobble around a little these first few months. I have never used green tea. Twenty five years ago when I was diagnosed with bc my MO said not to becuase at the time it was thought to promote estrogen so I've just never gotten into it.
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Hi ladies & gents! Popping on to let you know about my CT scan results... NED! Ibrance didn't work, but olaparib (Lynparza) is doing the trick. According to the CT scan results, they can't find the tumor and the lymph nodes have all gone down to normal. My CA 15-3 is 23, CA 27-29 is 35.1, and CEA is 1.9 - which are all normal!
This is from the neck CT: "IMPRESSION:Interval decreased prominence of the soft tissues in the left supraclavicular region/left pleural apex. No suspicious soft tissue mass or node is identified."
This is from the abdomen/chest CT: "Previously enlarged left internal mammary node is no longer apparent/measurable. The left supraclavicular mass previously biopsied is poorly identified; see separate neck CT report." IMPRESSION: "Since 6/7/19, resolution of pleural disease and left internal mammary lymph node. Poorly conspicuous, probably treated left supraclavicular lesion. No current measurable disease is seen."
I go back in three months for another scan. Until then I don't have to see the doctor or get any blood draws! I am super excited. PAT - this is a WONDERFUL drug!
Nicole - I do remember my oncologist (thrice removed) saying something about maloxx and benadryl for mouth sores. Hope they resolve soon.
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Thanks Holli...are you ER+ Her2-? How long did you try Ibrance before it didn't /stopped working? Or how long did it work for? Also the drug you are on now is that like intravenous chemo or pills like Ibrance?
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Congrats Holly!
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Holly that is GREAT GREAT news!!! Celebration! Congratulations!
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Wonderful news, Holly! Yay! Keep that good news coming!
Pat, I am on 125 mg dose -- just completing my second cycle right now.
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Holly, I just read your report to my husband and we are so excited for you. NED! Wow! Go, Holly! We're doing the Lynparza Lindy with you!
My scan is being moved up as my oncologist will be out for a hip replacement. You make me almost hope for progression so I can be all in dancing your dance!
Love from PatGMc
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Congrats Holly!!
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Nicole - Lynparza is a pill. I take two in the morning and two in the evening. The SE are less than Ibrance - more tolerable, I feel. I am not losing my hair - and it is growing back pretty fast. However, I think the hair growth may be because I am not on AIs anymore. At my MBC diagnosis in Feb '19, I was ER+ (70%) and HER2-. At my restaging (I got a second biopsy as part of a study) in June, I was hormone negative and HER2- still. That's the reason why I progressed on Ibrance and Faslodex shots. I wasn't hormone positive anymore. I was on I/F for only 3 months. And the progression was more than the 20%. They didn't want to continue on the medication since my tumor was growing bigger and the lymph nodes were getting bigger as well.
42, Pat, Bev, Moomla, & Simone - thanks for the congrats. I so expected it to be regression, but not to the point of NED. Thank you for letting me stick around here.
Pat - I am glad you could share this wonderful news with your husband. I hope you'll be able to share with your daughter, too. It is a miracle drug and is doing the trick for me. I hope you don't have progression on your next scan and continue on Ibrance for as long as you can. But know if you need to change the dance, Lynparza Lindy is a great second choice. You get to ditch the AIs which has been wonderful.
I did ask about PARPs for those who are not BRCA+. My oncologist said that they are hoping it works. I believe he is part of a study - or he is really watching the results.
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Holly, I'll get to see my daughter tomorrow and tell her your good news. Keep celebrating!
Edited to say....I couldn't wait and just called to tell her! She sends her congratulations!
PatGMc
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I was taking the green tea extract (500mg) . There are posts page 625 to avoid green tea. Thanks Patgc I will ask the MO nurse for help next year . Thanks Moomala for your reply I can sleep better now.
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Holli thanks for the info...and I thought I said this but I guess i didn't... YAY about your scans!!!!!!! So So Happy for you!!!!
Thanks for the in depth info I feel like you answered all my questions and I understand why you were switched and such.
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Congratulations Holly! That's wonderful news!
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Good morning and congratulations Holli.
Bev Jen your onc may have samples too.
Tanya
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Congratulations Holli! So happy to hear your good news. NicoleRod - I developed mouth sores for the first time this month since starting Ibrance. My MO prescribed me the Dexamethasone rinse and they were gone in 2 days. Definitely worth a try!
Otherwise, just saying hi and sharing my scanxiety . Had scans this morning and I've been feeling some pain in my sternum the last week or so, so I'm particularly nervous about this round of results. Last time, they released the results to me electronically and there were no signs of progression. It was great, but now I'm a little worried that if they don't release the report to me today, it means they see something... So hard to put these kind of thoughts out of your head
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mshar, remember that it's Friday which may delay the scans being read. I pray everything looks good.
Love from PatGMc
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Jaycee...nice one re the term Screwy and not letting the meds get away with that! My team don’t use words, they just shrug
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Karenfizedbo15, you made me laugh with the shrugs. I was thinking about doctors I've known who told people they had 6 months to live.....
so yours would give 6 shrugs, huh?
Love and a Shrug from PatGMc
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