Ibrance (Palbociclib)
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Susan, I think they should have sent you chocolates for sure after all you went through! How are you doing now? I've forgotten what tx you were going to Xeloda? Wishing you well.
JazzyJune, Glad to hear your WBC improved enough to start the next cycle. How are you feeling?
Marilyn, Congratulations on your great results! Wonder if we could trade a pill box for some eyelashes?
Deanna, Happy to hear your persistence finally paid off, hopefully that will be the end of your insurance headaches for this year.
Hi PattyP, How are you? Very cute new avatar pic!
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Thank you Jobur. I feel ok, a little tired though. My biggest complaint would be the pain across my ribs at the thoracic level.
Has anyone experienced significant weight gain in a month's time? I weighed myself today and saw that I've gained 14 lbs. in the last month even though I've given up soda and am trying to drink more water?
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Jazzy, I have also gained about 17 pounds in 9 months. My onc says it's the Letrazole. Also says the weight gain does not concern her, she said very active cancer in our bodies would cause a loss instead of a gain and is a good sign in a way.
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I have gained a ridiculous amount since menopause and all the meds 5 months ago, but my dr is also very unconcerned, but the waist band on my pants has a few complaints!!
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Even though weight gain is not an issue with the docs, it's quite an issue with me. I have already been struggling with a weight issue and just don't want to add to the problem. Yikes!
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You aren't missing anything if you have not gotten your Ibrance gift in the mail from Pfizer. The pill caddy looks great but the lids are really hard to open. I almost broke a nail trying to pry it up because my fingers were too big to get in there. Not great for anyone with (Letrozole?) stiff hands.
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I have not gained any weight but I think it's because I went vegan and gave up the processed foods and my dear wonderful wine. You would think with all the calories and carbs in beans that I would gain but I am holding perfectly. I don't have a problem with the Ibrance, it's the letrozole that I think gives me aches.
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hi all,
Welcome to the new members, and I wish you success on this treatment.
I have never received any gifts from Pfizer!😏 But, I pick mine up at KU Med center pharmacy-so it's not mailed to me.
I haven't gained any weight on Ibrance/Letrozole. I do lose a little each time I have a round of radiation, but I gain it back. I do think I retain a little fluid-maybe from the Letrozole. I also don't think I have any pain not related to my bone mets. Only big se for me has always been fatigue.
Big appointment February 1 with MO to discuss if it's time to move on. On my eighth round now. First 3 months had great results. Since the middle of November the results of TM and scans (plus new pain) make us think I may have to change. But, when looking at all of you on Ibrance with Faslodex I'm wondering if that's the direction she will go. It makes me nervous!
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Deanna - so glad you over that BS. They don't want ppl to live. Let's expensive for the Insurance Comp.
So Dani was takg Ibr/Letr for 11 days, and Onco ordered BT on the 11th bcs she is going away and he wanted to let her know if she needs to take the neupogen along, so BT came back very low platelets, very low everything what should not be and very high what should not be. He said she should stay off it till Wed. - But Deanna I don't see grans on the BT only each separately. So neutr abs is 1.0 Lymph 0.5 and RDW CV 17.7 Then something about Macrocystosis High, and RBC MORPHOLOGY abnormal??
You guys had this? Do you know what it means? when I looked it up, I understand maybe she needs more B12? Should she take a pill? I also asked him mayb she could cotinue on it just in a lower dosage, but he said no. Could you please chime in?I knew it was gonna happen when she is away w the kids. They left earlier bcs of the storm, and today already Hubby had to go out just w the kids bcs she could not make it. Thanks
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Momall- Did they suggest a B-12 shot? I wish I could answer your questions but I do not understand it either. I do know that a B-12 shot is better than taking a pill.
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LovesM no I was just looking up on Dr Google. To understand all these references.
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MomATT, I'm not a doc, but here's what I've been told... Testing midway is not necessary, although some oncs do it to stay on top of what's happening, especially since they have very little experience w/Ibrance. Counts will fall; it's part of the way Ibrance works. They should also rebound quickly, and seldom lead to serious infections, but of course only our own oncs know what's dangerously low for us. My UCLA onc told me they do not advise against traveling while on Ibrance, but when I did it in December, I got pretty sick. Meds to raise white counts most of the time are not recommended with Ibrance. That's in the literature posted here earlier -- but again, I read about oncs doing it and can't comment on whether it's lack of experience w/the drug or prudent and wise. I suspect it can be either one, depending on the patient. In the same way, low red counts are not due to iron deficiency anemia. They're the way the drug works. But again, only someone's onc would know their specific hx and whether or not low counts need some sort of intervention.
Can Dani's onc or a P/A or RN in that office answer your questions about her labs? I think that's where you need to direct some of your specific questions, although, in general, I think a lot of us have had abnormal stuff going on w/Ibrance that often improves as our bodies adjust to it.
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Mommaall,
My CBC doesn't list grans either. I wonder if that is the unit of measurement rather than one of the components?
Mine also lists neutrophils, lymphocytes, RDW, etc separately. All of these except RDW were in the normal range for me prior to starting Ibrance. After Ibrance, most of the CBC components went below normal and RDW went even higher. I believe this is "normal" with Ibrance, but your mo will determine when they are too low to continue.
I tried taking B12 supplements for 2 months (to see if my RDW would come down) after doing a consult with Dr. Google and it did not change a thing. Here is a site I found with some good explanations of CBC results. Hope you find it helpful.
https://labtestsonline.org/understanding/analytes/cbc/tab/test#rbc
And I especially hope Dani has a wonderful vacation! A little travel can really lift a person's spirits.
Hugs to you both,
Jo
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Deanna and Jobur you guys make me so emotional - your are sooo sweet and special. The truth be said Onco was not very concerned at all, I am just worried. I just this min got to spk to our Physician he also told me he is not very knowledgeable about this combo, but he also said to hold our breath and we'll pass through this. Thank you guys. BTW i remembered reading about lowering the dosage, I wonder if that could make a difference so maybe she could be on for longer periods of time at a stretch.
Thanks so much for the good wishes, oh she was so excited bcs the kids were excited. So she's gonna do her best, and she was really looking forward to this, so it's gonna be fine.
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Weight gain out of nowhere for me. 8 pounds in a 3 week span. I can't fit any of my pants. I am also severely bloated to the point where I look like I at least 5 months pregnant (oh I wish). I have been bothered by it as I have never been this heavy! I will get over it
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Mom, my dose was lowered after the first cycle, down to 100 mg. My counts are low but stable on this dose. My onc says she would rather have me stay steady on 100mg then have to keep taking a break on the higher dose.just getting ready to finish cycle 10.
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Mom/Jobur - Absolute neutrophil count (ANC) measures number of neutrophil granulocytes, so you may have ANC on your lab reports.
For those who were mentioning the Ibrance pill box, mine arrived shortly after I had signed up for Pfizer's co-pay assistance program. I think that is probably one of the primary ways Pfizer would be able to obtain your name and address. I don't think your pharmacy would automatically notify Pfizer because of privacy with medical records. I agree the boxes were too hard to open. I just keep my Ibrance in the pill bottle in my purse now so that I always have it with me at lunchtime, which is when I take mine. I have a daily alarm set on my phone, and Voila! Ibrancetime.
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Moissey, Thank you. My CBC shows this as neutrophil % (ex 30) and neutrophil # (ex 1.5 x10³/uL) so guessing the latter would be the same as ANC?
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Jobur - Yes, I believe the second neutrophil number would be the one you are watching. If it's above 1.0, usually you would be able to restart a new cycle although it seems there is a little variation among oncologists as to the exact number they go with.
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Mdillard, my jeans and trousers got too tight also. I blame letrozole and permanent chemopause.I went shopping for the next size up, and feel so much better in clothes that fit. The tight ones just taunt us. But the bloating--what goes your onc say about that?
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my weight went up last month. Three months after oomp and arimidex. Hoping it's just the holidays and lack of exercise. Ibrance has me eating often so very afraid I'm sliding downhill and backwards in weight.
Does anyone else get cold? My wbc is decreasing but not too low. On my last four days of Ibrance. Don't feel sick. Just cold until the next hot flash. Look like a bag lady with all the layers.
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Zills, Yes! I am freezing most of the time when I'm not having a flash. Hands and feet especially. It's January and I live in Wisconsin, but still. Exercise seems to be about the only thing that warms me up. And to a lesser extent, food. I have been able to keep my weight in check so far, but have a much bigger tire around the middle anyway. And you can't look like a bag lady without a shopping cart. (Apologies to any real bag ladies out there..)
Welcome to meno/chemopause ladies. So sorry for those of you going through it too soon and for the wrong reason. You're smart Shetland, why be uncomfortable? I am ready to give my jeans away after wearing them all my life, they are just too uncomfortable now.
Lynwood, you must be one of the longest Ibrancers on this thread. Did you and Pearlady start around the same time?
Hope everyone is having a good weekend.
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Jobur & Zills - interesting that you should mention the cold hands and feet. It hadn't occurred to me that it could be related to the Ibrance. Yesterday it was 60 degrees here in Salem. I turned the heat off and opened my windows. Enjoyed the fresh air, but once the sun went down the temp dropped to the low 40's. Brrr.
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Moissy, The insurance company finally approved my use of Ibrance, and it came in the mail yesterday, and yes, it had the pill box, journal, and insulated bag. The pharmacy said they signed me up for the co-pay assistance program, so my co-pay was $10. I'm not sure how they got around the privacy issue.
Weight gain, ugh! I can certainly sympathize with you all. I gained so much with the steroids (okay, and some chocolate!), that I received along with Abraxane that I went up TWO pants sizes, and yes, I finally went and bought new clothes because wearing something too tight just made me feel heavier. Funny how people think you should get super skinny if you have cancer. Last summer I ran into two people I hadn't seen in a couple of years, and one of them said "You've gained weight.......I mean you look great, healthy"! The other said "Yeah, you've really chubbed out"! Really!?? It's amazing how everyone feels like they can comment on the way you look. Anyway, now I've been on Ibrance for 16 days and I've lost 6 lbs.. (Lack of steroids?)
Anyone else suffering with neuropathy? I've been going for acupuncture, taking Vitamin B complex (on the PA's recommendation), using diabetic nerve pain cream, etc. and still some days I can barely walk my feet hurt so bad.
Hope everyone has a relaxing week-end. Monday I start babysitting my one year old grandson while my daughter is at work. I'm looking forward to it, but also hoping I can keep up with him!
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Deanna and Jobur you guys make me so emotional - your are sooo sweet and special. The truth be said Onco was not very concerned at all, I am just worried. I just this min got to spk to our Physician he also told me he is not very knowledgeable about this combo, but he also said to hold our breath and we'll pass through this. Thank you guys. BTW i remembered reading about lowering the dosage, I wonder if that could make a difference so maybe she could be on for longer periods of time at a stretch.
Thanks so much for the good wishes, oh she was so excited bcs the kids were excited. So she's gonna do her best, and she was really looking forward to this, so it's gonna be fine.
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Lynwood and Jobur thanks_ first how do you get let's say to 100 or 75 from a 125 pill? and Onco already told her to start on Wed(stopped on Thursd), so no BT is done prior to restarting so they just guess? just hope? Neupoden Saturday. SO they figure a few days and then she could restart? She gets BT again on Monday the 1st of Febr. Could you guys explain if that is how it works.
I also wanna start a thread for triple positive w Ibrance, I haven't seen it and i would like to get info if it has worked for them.
And the weight gain? Agh, she is so used to her small figure, it won't be easy.
Appreciate all your help -
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Mom, my doctor made the decision to decrease my dosage after the first cycle. I had blood drawn every week during the cycle and the counts were to low to continue on the 125mg. Forgive me, I do not remember what the "magic number" was that made her stop. I took off the scheduled 7 days and restarted at 100mg. My onc said it can be lowered only twice, from 125 to 100 to 75mg. You will need to get a new script for the lower dose. One lady here, I forget who, tried to estimate and took some out of the capsule to make a lower dose. It did not go well and she was sorry that she tried to do that. I did not have blood testing prior to starting the lower dose, but had them every single week for about 3 cycles. My onc said she was being overly aggressive with the blood tests but would rather be safe then sorry since this drug is so new. After 10 cycles she still insists on bloodwork every 4 weeks.i have done fine on the 100mg
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Jobur, not sure when Pearlady started but I believe she has been on even longer then me. I had my first cycle in the beginning of April 2015.
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Lynnwood - the numbers are - Lymph abs 0.5- Neutr abs 1.0 high RDW high- platelets very low..60 MCV high and TM still elevated, but not the word ANC. I also am trying a thread I started for triple + with bone mets and taking the Ibrance, bcs officially they advised only for HER2- so I would like to see if others were also using it off label. It's a "shot in the dark" as is, but when it's not directly recommended for it than so much more...
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Hi ladies. I haven't been on in quite a while. You can probably understand that you sometimes need a break. After losing so many sisters recently, and especially Stella who I was close with, it's been difficult. I am probably on Ibrance longer than anyone. Been on since the end of February. So almost 11 months. Still keeping me stable. My onc says that when the markers creep up he is going to replace Letrozole with Faslodex since I've not had it before. I have gained a little weight but not much. I attribute any weight gain to becoming lazy. I've had neuropathy issues from previous treatment as well as a bad foot injury. I was on Letrozole previously for almost 5 years snd did not gain weight. But everyone is different. I also take Metformin which I think controls any weight gain. Hopefully it's doing the same for the cancer.
I Ithought I was the only triple positive here since Ibrance is really not approved for triple positive. I'm glad to see that others who are triple positive are also getting approved for Ibrance. I'd be interested to know if you are still getting Herceptin with the Ibrance snd Letrozole. Still
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