Ibrance (Palbociclib)
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Pearl Lady - right now I am taking Kelp, Ubiqinol-QH, Riboflavin, Niacin, liquid K/D... All approved by the Phizer. I am sure if you contacted the company they might be able to help you with information regarding any supplement that might be contraindicated. They want this drug to work and they want people to stay on it. As I said, my DF MO just ran the whole list by them before I started the trial. I was taking 4000 mg of Borage Oil per day which they said to stop. I just spaced out and forgot to ask why?
I am about to go see my naturopath and see what he reccomends taking to help with blood counts and immune system while on Palbociclib. I will then run that by the triall Dr. And share whatever information I get with you all.
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So disappointed that my entire blood work details are in the basement after one cycle. I had to have more labs today and hold off with the Ibrance. My labs were much like Romansa's . so disappointed. However, I feel fine Carolyn From Music City
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So disappointed that my entire blood work details are in the basement after one cycle. I had to have more labs today and hold off with the Ibrance. My labs were much like Romansa's . so disappointed. However, I feel fine Carolyn From Music City
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Thank you so much for your great info Lenn13. The info here is invaluable.
Carolyn, you and I seem to be having the same situation. Yet some have been able to continue on and others not. Let's just hope for the best.
Thank you all. Myra.
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I think our MOs are trying to figure out how to read these counts since Ibrance is so new. If we were getting these numbers on many of the other treatments, it wouldn't be good. However, my MO and her colleagues seem to think that these lower counts aren't as dangerous as they look on the surface. I guess time will tell. I'm wiped out tired daily. Of course, I'm up at midnight because I fell asleep at dinner time. This one is not as easy at it seemed those first couple of weeks. Still, I'm hopeful.
Btw....lunch with Ashton Kutcher was my lame attempt at an April Fools joke. I was so tired today that my kids got through the day without me getting them this year. Darn. Guess I have too stick around till next year!
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Lenn thank you so much. I will contact the company about some of the supplements I am taking. I have been taking Ashwaghanda, Astragalus and Vitamin C for the low platelets from the very beginning. I am into my second cycle of Ibrance/Femara and my tumor markers are considerably lower, so I am thinking that these are okay, but never hurts to confirm.
I was advised to take Maitake Extract and Shark Liver Oil to help boost red and white blood counts. I am going to run these by the company. I have no issues taking Neupogen for the white counts as I have taken this on and off for years and have had no issues and have not read of any life threatening issues with Neupogen. But I have refused to take Procrit and will have to deal with the low red counts differently. There have been disturbing reports about deaths from Procrit and they make you sign off before you take it. No way will I ever take that.
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Very disappointed. I called Pfizer Customer Serivce and was directed to a pharmacist to discuss the various supplements I am taking . They said that they had no information on any of the supplements with regard to Ibrance and that I should refer questions to my onc. Not sure now where to direct questions. Would be very interested in hearing what information others have received as far as what supplements not to take.
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shoot I have no ideas. My MO says he has no idea either. Yippee all. Myra
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I don't either Myra. Very discouraging but I will keep on with those supplements that I have been taking all along since my tumor markers have decreased after one cycle taking the supplements.
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Thank you for your efforts in finding info on this. It reminds us that we are in the very early stages of this drug and so much is still unknown. It is so encouraging to hear that your tumor markers are improving, Pearl, I will have another check in a couple of weeks and hope to report good news!
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Pearl - That is too bad the company wouldn't help you. I would have expected more from them as you know someone in that company has the answers. I am going to Dana Farber tomorrow. I will ask them who they talked to.
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I just posted a list of the medications I was told to avoid. Hope this is helpful
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thank you. Myra.
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Wouldn't you know, just after reporting that I had no problems on the Ibrance, I got extremely exhausted, headache, chills and bad stomach sickness that night and was exhausted the next day.
I had just switched from Prilosec to Zantac the night before, but I'm thinking it probably wasn't the Zantac but maybe I just picked up a bug since I was inside in big crowds with kids on the weekend. Hopefully it was not the Ibrance, but I'll ask the nurse (she said my counts were low but she wasn't concerned). I was extremely thirsty also - must have been dehydrated although it seems like I'm drinking enough. I feel better this morning, so hopefully it will be a good day.
Good luck to everyone with the blood counts.
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Hi everyone! I just got word Wednesday that I have some progression on Faslodex so my onc is switching me to Letrazole and Ibrance, so I'm now here with you all and hoping for great things from Ibrance. Thank you so much for all the information already on this thread, very helpful
I don't have the Ibrance yet, but I've just started dealing with my Rx insurance about it. I signed up for the Pfizer co-pay card but had a question I was hoping maybe one of you might know the answer to. The card is good through the end of the year, does anyone know what happens after that? Do these things commonly go on for years and you just need to re apply in 2016? Or are we likely to be on our own with several thousand a month copays for this drug? The thought of that is pretty stressful!
Thanks!
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Rosestoeses, none of us can seem to get many answers about anything. Don't know about the payment schedule at all. Right now I am paying $10.00/month.
3 holly feel better soon. I am off to get more blood work! Myra.
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Thanks Myra, doctor said if it happens again to call and to switch off the Zantac, but it was probably just a bug since the headache and chills are gone. Good luck today.
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NUMBERS ARE UP, starting back up tonite. Finally some good news! Myra.
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Right on Myra!
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Hi Romansma - just noticed you were on everolimus - were you in a study? - I was in a study at Stanford with it combined with faslodex - so don't know it I was getting the drug for sure but I dropped out of the study as it was 10 hours of drive time each month/day (couldn't afford hotel rooms in Palo Alto) and I was very sick - could you tell me about your experience with Affinitor. Also, my experience with the Stanford study was they were VERY attentive while persuading me to do the study but when side effects set in they didn't seem to care much. My cholesterol shot up in 45 days from 160 with excellent ratio of good cholesterol to bad to 270 with a complete flip in good to bad ratio. I have heard that the docs that sign you up for a study are paid up to 100K by the drug company for doing so. Don't know if this is true, but if so, it is kind of unethical I think. Any way did you stop because of side effects, or because it failed?
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Myra, thanks for the response and hooray for your numbers!
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Great news, Myra, so glad for you!
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Thanks al
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Hi apackoftwo. I was on Afinitor for about 10 months. It seemed to stabilize me for about 7 months. I went off Afinitor after an extensive progression that included my tumor markers doubling and scans showing many new areas and most off he existing to be much more active. The SEs were tough in the beginning. Bad mouth sores, reflux, skin rashes, high blood pressure. That's what I remember. It's been a while and my memory is that of a 98 yr old woman these days, so sorry if I missed something. All in all, I would probably do It again
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Myra so glad for your good news. Keep it coming. Romansma praying for the same good news from you.
Lenn thank you for posting the list if medications to avoid. I don't recognize the names of any of the supplements I am taking . I'm feeling pretty good and good energy a week into my second cycle. The only annoying thing is constipation .
Apackoftwo I was on Afinitor for a year. In the beginning it was very difficult with lots of GI issues. But after about three months it got much better. I had no mouth sores and no issues with blood sugar or cholesterol . I think taking Glucophage helped.
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OK someone's gotta do it, LOL! 3 prunes every night makes morning sunny and bright....hope that helps.
Have a Happy Passover or Easter whichever you celebrate. May we be here for many, many more to come.
Myra.
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Borage Oil somehow interacts with CYP3A inducers ( like St. John's Wort) and that is why they told me to stop taking it. I think using the CYP3A inducers/inhibitors as interaction guidelines would be a good way to research suppliments . This information is readily available when you look up suppliments on Web MD or similar sites. Sloan Kettering also has a great section for natural medications.
WBC keeps going down. It didn't rebound this month but still recovering from that respitory issue I had all of last cycle. Not low enough to lower dosage yet. The trial nurse said to really try and stay away from sick people.
Glad your counts are back up Myra!!
Starting cycle 3 ! Here we go.
Happy Sping/Easter/Passover ......
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Interesting you mention the prunes Myra. Anyone else having an increase in constipatiin on this combo? I assume mine is the Oxy, but I was on Norco before that so it shouldn't have changed as drastically as it did. My MO just prescribed Linzess and I took my first dose today. Anyone else take this with any success?
Half way through cycle and the fatigue and weakness is pronounced. So much I want to accomplish each day and so much is not happening. I sleep a lot!
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OK counts are up...run don't walk to mani/pedi. Nothing better for happiness. Myra.
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