Ibrance (Palbociclib)
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Hi mgv. Haven't seen you in awhile. We still need to do lunch. 6 cycles and losing body hair will put me at bathing suit season. Wahoo! A good timely SE.
I know you all think I'm crazy but I'd much rather lose my hair then be nauseous or acidic. Don't know if I'll ever get rid of the fatigue.
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Moissy and momallthetime, About hair loss being a side effect of Ibrance, I actually read that in the paper work that came with the RX, so I don't know why Pfizer would pooh pooh the idea! I am using Latisse right now hoping it will help my eyelashes come back, and bought some biotin shampoo at Whole Foods. Don't know if it will help, but it won't hurt. I hadn't thought of checking youtube tutorials for make-up, but I definitely will be doing that! About blood tests, My MO said I would have to have weekly tests. I've only been on the Ibrance for a week, so I don't know if that means all during treatment or just for now to see how I react to it. In the Ibrance dosing guide it says "Monitor complete blood count prior to starting and at the beginning of each cycle, as well as Day 14 of the first two cycles, and as clinically indicated. For patients who experience Grade 3 neutropenia, consider repeating the complete blood count monitoring 1 week later. Dose interruption, dose reduction, or delay in starting treatment cycles is recommended for patients who develop Grade 3 or 4 neutropenia."
artist, hope your doctor can figure out what is causing your symptoms soon and get your treatment straightened out. It is so stressful when you're in limbo over treatment. I am still in limbo with the insurance approval. When I was first diagnosed Stage 4, I was considering going to UC Davis for another opinion, and my doctor called for me and consulted with a woman doctor there and then actually decided to try a different treatment. He said they go to the same tumor boards and they all know each other. (Stanford, UCDavis, and UCSF doctors). It's nice that you have another doctor you can consult. Another opinion doesn't hurt!
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Hello all...I'm a newbie!! First "chat room" EVER..HA! I did sign up today at pfizercopayone.com. You only have to answer 3 questions to qualify and then you print your card. After that I called my specialty pharmacy (CVS Caremark) and gave them the info off the card. They are overnighting my first round of Ibrance so I will be starting it tomorrow with Letrozole. Oh! And It ias only $10! Paid it with credit card over the phone. Sure beat the $1400 they said I would have to pay without it!
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dlb823 - I think you are giving good advice on getting started early with new insurance plans or providers because it can really slow things down. I was already using Ibrance from CVS CareMark but called early this month because my insurance changed. Same insurance but a different policy because I had to reapply and get the policy through healthcare.gov so I could get a tax credit. I had enough income that I didn't qualify last year and had a private BCBS policy.
You definitely have to call the Specialty Pharmacy because the regular CVS CareMark doesn't have a clue as you found with your first call. I went through that early on and it was very frustrating. Since getting that straightened out, I have found them to be very responsive, almost to the point of obnoxious with calls reminding me to schedule a date for my new prescription. But, that's o.k. because they have been great to work with since initially getting things straightened out. I called Monday to give them my new insurance information and they scheduled by new delivery which I received yesterday. The number to use for the specialty pharmacy is 800-318-6108 for anyone else that may need it.
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Thank you so much 513mgv! That is very helpful and great to know. I have also noticed my hair thinning. I am in my fourth cycle of Ibrance. First scans in two weeks, so nervous!
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Hi Ibrance sisters. I haven't been on here in a while. . .glad to see everyone is still plugging along on the Ibrance journey. Welcome to the new members, although I wish we would have come together under different circumstances. As always, I wish everyone who hasn't had success with Ibrance much luck with new treatments. Everyone's journey is a step forward in this process. I don't know if many others are in my shoes, but I wanted to share an update. As a reminder, I was diagnosed in Feb. 2015 with stage IV breast cancer with metastasis to the bones - wham, the whole deal all at once. I started femara, zometa for my bones, and zoladex to kill my ovaries the end of March and I added Ibrance to the mix in early April. My first PET scan in August showed a complete metabolic response to treatment. No sign of 5 cm breast tumor and no active cancer in bones. At this point my surgeon and my oncologist began to discuss the possibility of a mastectomy since I had experienced such a positive response to treatment. As most of you know, this isn't typically an option for Stage IV and the research is all over the board - some is positive and some says it doesn't really matter. My surgeon said that due to the metastasis, she would not remove any additional lymph nodes and would not recommend reconstruction. She did not want my immune system to have to handle anything more than the surgery itself. My surgeon had me go back in for another breast MRI just to verify what the PET scan showed before we made a decision. The MRI confirmed it also, no presence of cancer. My docs reached out to other docs and we decided to go for it in order to reduce the tumor burden, so the meds can hopefully be more effective long term. So I had a bilateral mastectomy Dec. 7 and anxiously awaited the pathology report. The path report did show widespread, minute nests of active cancer, but the most important thing it showed was a bunch of dead cancer cells. Even though I would have preferred for there to have been no cancer, I am happy with these results! I did have to stop taking Ibrance in November in preparation for the surgery. Aside from the surgery pain, I felt great without the Ibrance in my system ( ha ha). I could really tell a difference! Now I've started taking the Ibrance again and the fatigue and other lovely SEs are back. But, I will take it, if it works - and it is working. I will stay on this med protocol hopefully for a very long time. I will have scans again in February or March. I pray it continues to kick this cancer's butt !! I am so thankful for this group and the info that is shared on here. Y'all are a blessing! Stay positive and keep fighting!
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KK MOM
So happy you're having such great results!! May it last for a VERYVlong time!
Babs
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KK'S mom - That is phenomenal news! Sorry you have had to make all these choices and tests, but so very happy to hear your fantastic outcome! Yay!!
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KKsMom, wow, what an incredible response you've had!!! So happy for you!!!
I won't bore everyone with the details, but I am still waiting for Caremark Specialty Pharmacy to get their act together. So far all they've done is leave a message at my hubby's office (not either of the phone numbers I gave them yesterday) to report that they are still getting my account created and doing benefit verification. When I reminded them about the Pfizer Co-Pay One program, they seemed clueless. I'm trusting that you're right, Sarah, and that it will get easier!
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That is fantastic news kksmom!!!!! Congratulations!!!!!
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KKsMom, such great news! It's what we all wish for and with Irance we may get there one day! Welcome NicciJ! You will learn a lot here!
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Hi everyone. New to this thread and unfortunately back to looking at the breast cancer websites. Originally diagnosed with stage 1 in 2009, had bilateral masectomy and 5 years of tamoxifen. 7 years later on a fluke kidney stone cat scan, found spots on lungs in August 2015. Had ovaries removed and started Ibrance and Femera in Sept. First Pet today since started treatment, getting results Monday, fingers crossed. Side effects are minimal, headaches, mouth sores, joint pain, fatigue and drop in blood counts but all are minimal enough for me to continue with treatment as long as it works. Better then the alternative I guess. I am 42 years old, mother of 3. Trying to stay positive and hoping to make some friends who know how I am feeling and what I am going through. Thanks for being here and sorry we are all here.
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Hi jpix, Sorry you are here too but I think you will find it tremendously helpful, both for current information and just general support. Whenever I am having a very down day, not feeling very positive, I ca come here and scout around for some uplifting encouragment. It really helps! So welcome and hang in there! One day at a time....
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Welcome jpix! The ladies here are great, lots of support and valuable information! You will learn more here then any doctor could ever tell you!
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Hi Ladies, a surprise recurrance after 2 years cancer free landed me here on Ibrance and Faslodex shots. Onc gave me free 21 day supply of Ibrance, but sounds like the re-order will be its own kind of drama. Still awaiting PET scan results which arrive next week. Yikes. BC (ER+ 80%, PR+70%, HER-) was found in pleural fluid after ER did a pleural effusion; 400cc vacuumed out of left lung on Xmas eve, 550cc drained on this Monday. Very nervous, assume my left lung is involved as its painful to take a deep breath. My sternum hurts if I breath deeply -pain is right n the middle, but I don't feel lumps anywhere? All this happened post trans flap surgery this summer - my ca 27.29 jumped from 23 in June to 50 in November. Any advice or thoughts are more welcome. I live alone, so it's spooky at night when my mind wanders. So far I am very tired, sore across my entire chest and underarms. Despite this I am going to work (to a job I love) most days and collapse into bed after eating/taking Ibrance. Thank you all for being here.
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Thanks Lynnwood1960! Yes! I can tell I will learn a lot here! Amazing people with amazing stories... Just swallowed my first Ibrance/Femara combo a few hours ago. Hope to copy your story one day KKsMOM! Congratulations!
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Welcome, NicciJ, jpixstix, lalady1, and anyone else new who posted on previous pages. (My solution to getting behind on this thread is to just jump back in on the current page.) I wish you long success on Ibrance. I have just finished my tenth Ibrance + letrozole cycle; started at 125 mg and now at 75 mg. Still maintaining the NED that Taxol got me.
"Look into 2016 Pfizer co-pay card" was on my to-do list, so I was pleasantly surprised when the specialty pharmacy called to renew, and told me that I have a $10 co-pay. That can only mean that they or my nurse already got me on the program this year. So refreshing not to have to spend time on that sort of thing. What's funny is that for like the first six times I went to pick up the pills at the local pharmacy, it took two or three people plus a couple computers and sometimes a phone call for them to actually find the pills. They would be in a different place or it would be a new person every time. Also at first it seemed like the specialty pharmacy didn't want me to have the pills even one day ahead of time, and now they are calling me to refill a week early.
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That's great that you didn't have to fool with it. I decided that my pharmacy may not be able to handle it (Ha!) so I had the Ibrance sent directly to my house.
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I was worried about climate control on the delivery trucks, so that's why I pick it up at the pharmacy.
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Hello to all and welcome to our newest ladies. I get my Ibrance script directly from Pfizer and they ship it to my MO's office since Fed Ex just dumps it on the ground in front of my apartment.
Initially, when I started the Ibrance I had no script insurance and qualified for Pfizer's patient assistance foundation. But as of January 1, I have script insurance and still continue to get the Ibrance from Pfizer, and since my co-pay would be $3,200. monthly Pfizer gives me assistance with that part and I guess my insurance pays their part to them. Not sure how it all works. The patient navigator at my MO's office set it all up.
While my TM's have thus far been in the normal range from the beginning, after I started the Ibrance they went from 18, to 20, to 25, then 24 and now 22. So I guess it's working. I'll take it. Yeah!
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hi jpixstox and lalady1,
I have been following this thread for awhile but just started posting myself.
Hello everyone!!! It is helpful to have a place to go when you feel like no one understands what it is like to have this illness at this stage. So a big thank you to everyone here!!!
I was diagnosed in sep 2015 with mets to lung. First CT scan is scheduled for Jan 25. I am right behind you jpixstox! I hope you receive excellent news! I hope we all receive good news at next scans!
Lalady, I understand how hard it is to be alone. I have a young daughter but very minimal family and no partner. It can be really tough and scary.
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I'm a little behind in welcoming the new Ibrance ladies. Know that we are here to listen. I feel for those without support at home. Please reach out to us, ask your doctor about support groups-find someone to share with. It's so important to get that emotional support. Lalady, it's great you have a job you love
I pick my Ibrance up at the KU med pharmacy. I also didn't want it exposed to sitting in the mailbox or thrown on the front porch. That way I'm in control of when I get it. They have been wonderful about calling each month and asking if I'm ready to receive it.
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Hi everyone--regarding Ibrance delivery--my specialty pharmacy, Express Scripts calls me to set up a FedEx delivery. We pick a date and ask for AM delivery (important during hot weather) and they ask me if I want to sign for it. So the FedEx person knocks on my door for a signature. No dumping expensive drugs outside my door. I bet anyone whose source ships with FedEx could get it delivered with a signature. It is so nice to get it that way.
The other thing--for what it's worth--my MOs office has a prescription nurse whose job is just to handle everyone's meds and get them ordered or renewed. So, she figured out looking at my prescription insurance to call the prescription in to Express Scripts and also sign me up for Pfizer's $10. copay program. At the time I did not realize how nice all that was.
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Does everyone take the Ibrance and Femara at the same time? Does anyone take it after breakfast? I am in off week and I am thinking of moving it to the am as I am always positive of the time I eat breakfast.. lunch and dinner always is different and I want to be consistent. Plus I get insomnia too and want to see if the drugs are making a difference. MO said she doesn't care when I take it or if I take them together. In the interim, I have been on a wild goose chase getting the Ibrance since I switched to new insurance. I started at speciality pharmacies of Accredo, after 4 days they said Walgreens will fill this, and now Walgreens have just sent me to CareMark, so far Care Mark at least sounds like they have this in their system. They kept passing the buck, and my insurance company has approved it and I have a zero co pay.. Go figure? FRUSTRATING! Hopefully this is just because it's the first time on this new insurance. Which by the way is the best insurance on a PPO plan I could get. I just filled my letrozole and it had a zero co pay as well.
I had scans in mid December and there was no progression and my recent TM stayed the same they were drawn on 1/7/16- not up or down (27-29 in October was 43 and went up to 60 the next month. At least they didn't go up any further. I also finished radiation 5 weeks ago. MO said TM's will go up with radiation or surgery so I am hoping next month they show something better. The jury is out on whether the Ibrance is working for me because my bone biopsy said er/pr neg but they still feel it is positive as my ILC was very er/pr positive 18 years ago and it' the same cancer. Also, MO said she would have to have some real concrete evidence that there is progression before she would stop Ibrance. She said my cancer is very slow growing.
I have completed 3 rounds of Ibrance. I have very little noticeable pain as long as I take 400 ibuprofen every 8 hours. I tried cutting back last week but it was after my xgeva shot my rib felt really sore. I got nervous and went right back to the 400 dosing and it is better. Still there but I have to really move around to feel it. This is the rib that I had the pathological fracture in that is healed. Or it could be another met as I have several in my ribs.
Deanna, thanks for all the posting.. and links.. and welcome to all the new ladies to Ibranceland. MO at Dana Farber confirmed to me that 6 years plus is the record on Ibrance with NED. I hope each and everyone of us ... can have the rest of our wonderful lives NED because of Ibrance.
Also, walker is in the basement I am walking without incidence. I never thought I would ever be able to do that ever. I remember Deanna saying she walked 2 miles and I was in such pain when I read that and said that day will never happen for me. I haven't walked 2 miles but I am walking in and out of the grocery stores etc. I just have to be careful not to fall.. snow and Ice here. Have a wonderful weekend!!
Carol
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congratulations on no progression lovesmaltes!!
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Hi Carol, Nice to see you and hear your walker is gathering dust! My cane is not getting out much lately either. Keep on, slow and steady is great.
Sorry to hear everyone is having so many issues with insurance and Ibrance. Extra sympathy to those still working who have to find the time to do this along with everything else. Hope all is resolved soon.
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Adding my welcome to the newbies here! Although we all would rather have met somewhere else, at least we're also all on the forefront re. having this drug available to us, for which I'm very grateful!
Nikki, good to know that doing the Co-Pay One sign up ourselves is that easy. Thanks for letting us know.
Michele, I'm so sorry about your recurrence, but glad that CT picked it up when it did. Hoping your PET Scan results show great response to your tx.
Ellelou, I've always done what you described for past deliveries. But living in the desert, I'm always concerned about meds riding around for hours in a hot truck when temps are 110+ during the summer. We should probably ask Pfizer about heat and product stability at those high temps, or discuss it with whoever is shipping it when it starts to get warmer.
lalady, there's a thread here for insomniacs to chat. Here's a link: https://community.breastcancer.org/forum/102/topic... It might be something to check out, if you haven't already -- company for those moments you described. Good luck and keep us posted on your PET Scan results!
Hope everyone is having a good weekend! Deanna
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Deanna-once last summer Express Scripts said they would add in an ice pack because I asked them about the Ibrance getting too warm. Funny thing is that when it showed up there was no ice pack. Mine always shows up by 10 AM so the heat isn't too bad. I'm at the beach. If you are in the desert that a different situation! If they packed it properly it would probably be ok but maybe the risk isn't worth the convenience in the desert.
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Welcome to all the new women, and so glad to hear from some of our past success women that things are still going well for you! Happy to hear a lot of good news coming out! Deanna - thanks for posting the moonshot info!
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I am curious about how soon the side effects of the Ibrance started for most of you. I am on day 2 and so far I can't really tell any difference (which is kind of odd for me). I am assuming it continues to build up in your system and then causes problems?
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