Ibrance (Palbociclib)
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Boring is the best kind of scan. Yay!!!!!
I finished week 2 of cycle 3 last night and am starting to feel the cumulative effects again. However, in the past week, I have done two major software installations, entertained an 18-yr old French cousin, cooked for a family of 5, and reviewed and made an offer on a condo, which then stretched into an unsuccessful negotiation, all while the temperatures in our house were over 90º. Maybe I have earned the right to be a bit tired? No mid-cycle blood work for me this month. I guess the protocol only includes this mid-cycle check for the first two months.
Welcome to all the newbies. I read all of your stories, but have just been too overwhelmed to post much lately.
*susan*
p.s. Congratulations on a grandchild Myra. That is one of my secret wishes; to be here when that first grand might appear.
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Myra, Congratulations, what a beautiful baby girl, there could be no greater joy to lift your spirits !!!
Shetland, excellent news on the scans!
Susan, sounds like you need a vacation. Just got back from a few days on Cape Cod with my family - it was the perfect vacation with perfect weather every day - we all went swimming in the warm ocean water every day (even my 91 year old Dad and 88 year old mom who came to visit for a day) - it was so relaxing, just what we all needed!
Sandilee, so glad you are tolerating Xeloda, and I am praying that you continue to do well on it. I will have to make that difficult decision on a chemo drug soon if my scans at the end of the month show more progression, but I'd love to stay in "Ibranceland" as long as possible.
Welcome to all the newcomers, hope that Ibrance works wonders for you all!
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Wow! You are amazing! So very happy for you and thank you for such encouraging words for us newbies. Cycle 1, day 5, a few mouth sores, bedtime 9 pm!! I babysat my older granddaughter 3 days this week! Took her to my classroom and she was a great help setting up😇 Love hearing all is well for you
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Suzanna the supplements for the blood counts are as follows:
Maitake drops - for both red and white - 6 drops 3 times daily (also helps with energy and is anti-cancer)
Astragalus - 1 2X daily (for white)
Chlor-Oxygen - 1 2x daily with full glass of water - (for red)
Ashwaghanda - 1 2x daily before meals (for platlets)
Shark Liver Oil - 1 gel cap 2x daily after meals (for white)
Also blackstrap molasses with water several times a day for red
Floradix liquid - once daily for iron (I don't take this all the time, only when iron is very low)
Hope this helps. Let me know if any questions.
Dorothy
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No, it's not a pregnancy issue. My husband is fixed, and now I have my ovaries out. I used to be a Oncology RN, and we double glove when handling patients' body fluids because it is carcinogenic & teratogenic. (Harmful on the cellular level, as it is meant to kill cancer cells). So, I asked my doctor about it two years ago, and he said "yes, definitely, wear a condom during chemo". Hormone therapy works differently so I don't know the answer.
Hoping my TM go down. The bigger picture is survivability and I have been battling two years.
Much hope and prayers for each of you warriors.
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Dorothy, thank you for reposting your supplements. Several people have mentioned it to me, and I was just about to look for it.
What about zinc? I'd done some research last night, and that seems to be mentioned on a lot of lists.
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I don't take zinc. Is that suppossed to be helpful with the blood counts? I am going to ask my holistic pharmacist and also try to research it. Although I don't take zinc, I take many other supplements besides the ones I've listed. The ones that I've listed are for the blood counts only. Its expensive, but I feel good and think all of the supplements have helped me to have good QOL and to tolerate the treatments better.
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aka Shelley - come to think about it, I did not (nor did I want to) have anysex with my husband while I was on chemo. Abstinence works too, I guess. HaHa. 😂😂
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I can't imagine dealing with a condom along with all the dryness etc. that menopause and hormonal treatment cause. Anyway, nowhere in the drug info for Ibrance do I see that there is any such safety issue.
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I posted last night on a general page not Ibrance specific. I have been on Faslodex for Almost three months. I am nervous about the side effects . My Onc has asked me to cxl a planned trip to Hawaii due to the low blood count etc... Ugh! I have heard from another woman that she's been on it for two weeks, "so far so good" other than diarrhea .... Any other experiences. Just starting this and hoping its s match👍🏼❤️
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Shetland, wonderful news! Love to hear that.
Just got results from today's labs. I'm a week into my second Ibrance cycle on 125 mg. dose and my counts are all very low, but holding steady - some up a tiny bit! I'm thrilled! Looks like I will stay with the 125 mg. at least for this cycle.
Good Luck to everyone. Have a great weekend.
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AnneMorris, how low is low? I'm on my fourth cycle of Ibrance and just last month went on an amazing trip to Hawaii. My counts were at about 2. I still went. My Onc said I didn't need to do anything more than the usual diligence of hand washing and staying away from sick looking/sounding people.
Stefanie
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Hi Annie, I agree with Stefajoy to be diligent about washing hands but unless your onc can give you a specific reason to cancel your trip I would say go, people do travel on these meds and a holiday can be a wonderful way to forget about being stage IV .
I'm leaving in a few days for 5 weeks traveling extensively in Europe and will have to have a blood test every two weeks to check my WBC. If they drop too low my onc has already told me what to do next. Nowhere did she ever mentioned I should cancel or shortened our trip. We do have travel ins and backup plans if we needed to return home early but I don't think that will happen. At first I was nervous about the distance and length of time, now I'm looking forward with joy to this adventure.
Hawaii is lovely, hope you go.
Hugs,
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Annie, I recently traveled to Europe and have plans to go to Mexico soon. My doc had me check blood counts the day I left for Europe and mentioned he might need to have me do labs there if my counts were too low, although that didn't happen.
It seems extreme to cancel your trip. Hawaii is SO relaxing. That has to do wonders for your immune system.
Hope your counts recover soon
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Hello all,
I'm not sure if I can post here, but I did just started my palbo trial (safety trial, so everyone on gets drug) yesterday. I am being treated at UCSF. Been reading some early pages to start and see what I may be in for. I appreciate everyone posting about SEs. Feeling tired as usual, up at 4:45am w my 7.5 month old twins. I was pregnant with them during chemo, they went through four AC rounds and 4 weekly taxols before delivery. They are doing fine, except I wish they would sleep longer! They are my second set of twins, my first are almost 3.5. I want to stay around for them as long as possible. Good luck to all here
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I just received my Ibrance today, 8-15-2015. The doctor has not told me when to start yet. I am a little scared cause I couldn't tolerate regular chemo. that was used to treat my breast cancer in 2013. The cancer has come back and it is Metastic breast cancer in my spine. T3 - T6. I would appreciate suggestions to help me get through this. Thank yo
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Gato and Sally, Welcome!!!!!
Gato, wow. Two sets of twins... my brother and sister in law did that and it was not an easy task. They were very lucky to have supportive grandparents down the street. Grab some sleep wherever and whenever you can. Any chance you can hire a neighborhood teenager to come in two hours after school to allow you a bit of time to put up your feet? And, if we were taking a vote, you are in on this thread. This is such a new drug, that if you had to wait until others at your Stage are also on this drug just doesn't seem right.
Sally, the good news is Ibrance is not a chemo; it is a targeted therapy and much easier for most people to handle than a chemo. Are you getting Femara or Faslodex with the Ibrance? What hormonals have you done at this point? From my perspective [though today was a bit rough,] my first cycle was the hardest, the second one was a bit easier, and now round 3 is even better. As we get to know you, we will be able to help you navigate this new [and very scary] world.
Be well.
*susan*
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Popping in to agree with Susan on all counts!
Sallykay, I don't think you can really know how it will go based on how you did with a different drug, but Ibrance's side effects are much easier than early stage chemo. I wish you much success with it!
And Gatomal, wow, you are one busy lady! I agree with Susan, welcome! Someone else on this thread who's been here from the start (Holly I think? I can't remember but hopefully she'll pipe up) is also earlier stage and was in Ibrance for a clinical trial.
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Thank you Lynnwood, I started Letrozole 10 days ago and so far no SE's to speak of. Start the Ibrance Monday and worry a little about WBC's as I work at an elementary school and NEED to work. But whatever it takes. I love all you ladies who have helped me tremendously. Best wishes on those scans!
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Welcome Gato - I am the other early stager on Palbo. On this thread. I am probably in a similar trial as you... Phase 2 safety trial originated At Dana Farber. I am now being seen at my local Mass General facility.
I am just about to start cycle 8 and except for a few minor bumps in the road I have done well. I had my dose lowered to 100 mg around cycle 4 because of extreme fatigue and that made it very manageable. I am supposed to be on this for 2 years. You as well?
Good luck with those babies!
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good morning ladies and all you newbies. Sorry I am not addressing you all by name. I have been basically out of touch the last 10 days. I have been reading as much as I could. I just started my 6th cycle and so far my TMs refuse to come down though my scans were very good. I am sure I will be rescanned before the next cycle.
My main problem is my RBC. it is making me very anemic to the point of extreme weakness when starting to walk. The scary part is I never know when it is going to happen. I have to stop about 60 seconds and compose myself. It has to be the Ibrance because during my off time, it becomes much better.
Gatomal, it breaks my heart when I read about young women with such small children going thru this. There are quite a few young women in Ibranceland on this thread to speak with. S**t, I hate this cancer!!
Best to all today, have a pain free, loving day. Be kind to yourself. Take what you need and don't feel guilty about it.
Sorry I did not address all by name, but I am too far back. Know I give you all hugs.
Myra.
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thank you to all that extended your kind words and well wishes. Lenn13--yes same trial that started at Dana Farber. Eight cycles down already! Good for you. I so wish the dosage diary we have to keep was on my phone, it's such a pain to write down what time I took my drugs. I keep texting myself the time! It's nice to know that future dosage reductions may help, if there are bad SEs. It's the unexpected fatigue and things like that which worry me.
Re: the kiddos, my mother moved I with us to help this past year, both when I was pregnant and while the babies are so young. We've been lucky to have paid help too, I don't know how women do it without a support system. There is just not enough time in the day. Thanks all
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Hello, fellow Ibrancers! I haven't posted here in a while, but the last time I did, I remarked that Blue Cross/ Blue Shield would not cover Ibrance for me because they believed it was experimental in my case. "My case" is that I am 5 years out from diagnosis, not a newly-diagnosed metser. My onc's specialty pharmacy appealed, didn't use the research that applied to older metsers, and got my appeal denied. BC/BS advised me that I could ask my state department of insurance to review my appeal, and they would abide by the state's decision. Because of all this back-and-forth, I went all summer without treatment. With hard-core exercise and very clean eating, I managed to keep my CEA blood marker ( which works well for me, thank heaven) decent. Then at the end of July I vaguely remembered from this thread that someone had appealed to Pfizer. So I got on their website and starting calling any phone number available. No one I initially talked to knew of any program like I was referencing. Then, I called a number having to do with insurance, and that person knew about the program called Pfizer RxPathways. It looked like from the initial survey taken by phone that I was qualified to apply, so I did, only to be denied because they thought my income was too high. The really sweet lady who called me about the denial told me that I could appeal by giving them an itemized list of my monthly expenses. I did that immediately, and voila! I made it into the program! I'll be getting Ibrance through the end of December! I was crying on the phone and the same sweet lady who this time called me with the good news, teared up, too. This whole process took most of the summer and I came "this close" to IV chemo treatment. I teach high school and my daughter is a senior this year at my school. I wanted as normal a year as possible for her, one where she would not to have to deal with a mom with heavens-knows-what side effects, who would also lose her hair.
I started Ibrance a little over two weeks ago. On Friday, the 21st, I had a blood panel done as well as my CEA. My neutrophils have gone from 3300 to 1100--not low enough to stop the med for the last week of the cycle, so yay! But here comes the really good news that I pray will give you all hope--my CEA dropped from 6.1 to 5.9 in that two weeks' time! My onc was so thrilled that he shook my hand AND gave me a hug! The swelling under my arm is shrinking as well. The bottom line is keep going! If a 5+ year metser can meet with some success on the Ibrance/ letrozole combo, others can, too! Keep the faith! And God bless Pfizer!
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FaerieQueem such great news. So happy that you were able to get the Ibrance through Pfizer. It really is awful that we have to add additional stress by appealing insurance denials and searching for ways to get approved.
I have been Stage 1V since 2001 and started Ibrance in February. Right now its keeping me stable with very minimal side effects. I wish they would do studies on how these drugs react with those of us who have been Stage 1V for an extended period.
Hope you and your daughter have a great school year.
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Here I sit in treatment room with cold packs on Faslodex shots sites. Since on coumadin they are worried about bleeding in muscle. I have been on Ibrance 100 mg for 11 days and blood work today to low to continue. Netrophils down to 7000 and WBC down to 1.7. So I am off ibrance and temador for a week. Bone mets in entire skeleton system with some bone marrow involvement but still hoped to have enough good to make the WBC . have held off on radition to spine to try and save marrow. Did have radiation to neck and tailbone last year with great relief. Do you think 75 mg ibrance would be easier? So pleased to hear you guys are having such good results.
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Pearlady - from what I have been told.. These early trials with lower stage ER positive BC are mostly to determine how long people will and can stay safely on the drug. Ibrance is part of a group of targeted drugs that BC researchers think will eventually be added to hormone therapy to prevent hormone resistance. We may see patients taking one or two of these drugs ( in lower dosages according to my MO who is connected to the trial) with their hormone therapy.
If Ibrance helps stage four hormone therapy more effective - as the data as shown in the Paloma trials - I would like to think that these early safety trials would benefit you as it might mean if Ibrance is working for you it could be added to whatever hormone therapy you may have to switch too.
It is all part of the "individual treatment" movement as researchers find out more the intricacies of this disease. My hope is that they come up with the tests that show 1: that this drug will benefit someone and 2: that this drug is being effective rather than waiting to see if someone progresses ... Which is so frustrating to me and for all of you is a way of life. I don't mind being a guinea pig if I know that the data from this trial will help all of us
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Hi sending big hugs for all off you.
I keep getting this big bumps that hurt along with the small itchy bumps.
The big bumps go away after few days.
Anyone has the same side effects? I'm wondering what can cause it.
Also is there anyone on ibrance and going through reconstruction at the same time?
Take care
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I have three small itchy bumps at the moment, one of which is oozing a bit. I assumed that these were bug bites, though I always feel it when I am bitten. I will take note and let you know ziz if I get them again. I heal so slowly on this drug that I have no idea how long they will be there.
Can't help with the reconstruction. Wasn't part of my treatment plan, but gosh, given how slowly I am healing from simply scrapes and cuts, I can't really imagine surgery on this drug. but, you know, these folks deal with this kind of thing all the time so they must have some ideas on how your healing might be affected.
*susan*
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thank you
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Hi Susan and Ziz,
I have a bunch of small itchy bumps too. Look like pimples but itch like crazy. Thought they might be bites, but have had them too long now. I also have a hive like rash on my left arm only (lumpectomy side) that comes and goes. Trying not to scratch as that just makes it worse. Just irritating, not too bad.
How often did you get blood work done when you first started Ibrance?
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