Ibrance (Palbociclib)
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Spookiesmom, I can’t even imagine how hard this is for you. I’m so sorry for your loss and that you are dealing with this terrible disease. Hugs to you and your daughter.
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spookiesmom, I am sorry for the loss of your husband, wishing you peace and comfort in this difficult time.
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Thanks everyone. It’s getting a little easier, the dogs and I are adjusting. Kris was a daddy’s boy, he doesn’t understand.
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Spookiemom I am so sorry for your loss. What a heartbreaking picture of Kris. Big hugs to you and the dogs
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Spookiesmom- I am sorry for your loss.
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Spookiesmom: So sorry to hear about DH. The look on Kris's face says it all...
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Spookiesmom - I'm so sorry for your loss. The picture of your dog is heartbreaking.
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Spookiesmom sorry for your loss. Sending hugs. Kris gets a gentle head rub. Pets grieve too.
Tany
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Spookiesmom, sending you and Kris extra love0 -
https://community.breastcancer.org/forum/8/topics/879463?page=1#idx_1
I started a new thread, asking about anyone experiencing febrile neutropenia on Ibrance, which I'm still recovering from. Sounds like it's fairly rare, but if anyone's experienced it, I'm curious about how this informed your decision about either staying on Ibrance or starting something else. Thank you!
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SF Cakes, I am so sorry that you had febrile neutropenia and had to be hospitalized. That must have been really scary. I have not had that side effect .
Spookiesmom - the photo of Kris is so heartbreaking. Hugs to you and your dogs (and daughter, too). It is unreal for you to have lost your husband while having MBC.
Sunshine99 - great news on your scans!
Tina - great news about your scan, lung improvement!
Candy - I am sorry your test didn't show any helpful info but am relieved you won't have to pay for it. Thank you for keeping track of all of our scans, we all appreciate you!
Snooky1954 - Hope you get some answers soon.
RRabbit - congrats on stable bone scan, did you get the other scan results?
GoKale, welcome. Sorry you are here but you will get some great support!
Chicagoan, thanks for the yoga video link! I will check it out!
Jackie - let us know when you get your test results.
I need to catch up on all the posts as I was out of town for my birthday on April 1st - had a wonderful time with my family! Had my petscan today along with fulvestrant and the blood draw to check for my neutrophils to start Ibrance again. This time my neutrophils were 1.35 which is great! Last month, same day (1 week off from Ibrance) my neutrophils were .85. I really wish someone could tell us why they fluctuate. My cancer center never releases my petscan results until I have met with my oncologist - who I have a telemed appt with on Wednesday. However, I just got the report in my MyChart and it is all clear! I am really relieved and happy, as I know you can all understand. Truly, no one can really understand the anxiety that we have as we wait for the scan news. Ugh. Onward for 3 months.
Hopefully I didn't miss anyone that had scans or news. Thinking of you all - Easter is a time for renewal and I really feel it right now.
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Woohoo Aprilgirl for the stable PET. Onward.
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Hi ladies, sorry for the delay in reporting back the CT results. It came back stable. But boy was it pulling teeth to find that out. It also looks very sparsely worded compared to every other CT I've ever had, looked like they were in a hurry.
I had my CT last Wednesday on the 31st and knew I was coming up on a holiday weekend and getting my report before than might be difficult. Long, long weekend. Surely monday morning first thing in my inbox, nope. So I spent 2hrs on the phone this morning being transferred around to find out what the deal was. First woman I spoke with was oscar the grouch reincarnated. Kinda like "Eh, what do want?". I thought to myself I want to not have a conniption, that's what I want! Ibrance has me losing hair down the drain but you lady are going to make me lose my mind!! I was practicing deep breathing in between being on hold multiple times with her, then I got transferred to a new building and a new person after a lonnnnnggg back and forth please hold dance. The new lady was a breath of fresh air and emailed my report to me while on the phone with me. 1 min later I was reading it. The next minute I saturated my pillow. Pulled myself together to order my next round of Ibrance from a plucky "customer service advocate", she was really nice I liked her. I looked at the bottom of the report and it showed it was read at noon on the 1st. Got very irritated seeing that. Apparently the medical records sub who was filling in last week left a mess.
I have some thoughts on the frequency of bone scans and about foundation one but need to scrap myself off the ceiling first. I must admit I do feel guilt when my scans come back stable and other ladies need to move on or their bodies can't handle it for some reason. Not fair.
Congratulations aprilgirl on stable mable!! Jackie and candy, I'm not caught up on next steps for you both.
Spookiesmom, I'm so sorry for both the loss of your husband and that you have to wrestle with this disease too.
Off to wash my bedding, very ugly crying this morning, think some clean bedding to nap in later will be nice, wash away the dank hole I've been sitting in waiting all this time.
MO this friday and Zometa. After this Zometa I'll be doing 1 more every 3 month infusion and then will moving to every 6 months, my choice with agreement from MO.
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Rabbit- I am so happy for your stable scans. Woohoo !!!! Hum, every 6 month Zometa. I use Xgeva. Every month for the first year, then every 3 months. I worry about ONJ or other side effects. I have been on the med for 3 1/2 years total. Maybe move to every 6 months??? Hum.
I have MO appointment in 2 weeks--- on April 19. We will see what MO recommends for my next step and what the liver tumor board has to say about the small progression on the March 22 scans. I continue Ibrance/ Letrozole for now until we get another plan.
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Miss Rabbit...I'm so so so happy for you!!!
Candy...I've been on Xgeva every month for 3 years.
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JACK5IE- My previous MO was the one that changed it to every 3 months after the first year. Then when I changed MO's the new one kept with every 3 months. I just wonder how long we can be on these meds. And you with monthly all this time. Just wonder. I have not had any issues with ONJ or anything else, just want to prevent issues.
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Aprilgirl and Rabbit, great news on your scans! Sending everyone else love and as always it helps reading everyone's posts, and to be part of this community.
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Aprilgirl1...I missed your post! So sorry! Wonderful news on your good PET results!
Candy...I agree with you.
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Happy Spring, my friends!
I'm so happy to read all your good news!
Thank you for the info on Pfizer accepting prescriptions for Ibrance capsules once again. I had asked after my first difficult cycle with the pills and was told they would no longer make them. Now it looks like they will! My onc nurse is working on the switch and I'm excited!
Love from PatGMc
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Thanks, all! I just got off my telemed appt with my oncologist. I had already read my petscan report as it was in my MyChart (new policy is to release to patients immediately). All clear, which I already shared but the report does mention both sides of my axillary nodes show hypermetabolic activity that they associate with the covid vaccine #2 that I had 10 days prior. Interesting! This does not have an FDG number just says they are hypermetabolic. This pet also shows that I have a small hiatal hernia? Weird - I have no symptoms. My onc said they are seeing the enlarged nodes after vaccines with most patients and she is not concerned.
RRabbit- great news on your stable mabel news! We have a 3 month reprieve so to speak. Unbelievably upsetting that your report was read on 4/1 but no one bothered to update you or send it to you? It is inhumane to make us sit and wait in the awful purgatory of scanxiety.
As RRabbit shared I have a feeling of relief that my scan seem stable with sadness that it isn't the case for everyone. I have learned so much by others on BC.org that there are more treatments that work and look at our very own PagMc who is back on Ibrance and doing well. This disease is not for the faint of heart. This reality also has me feel very lonely, even though I have a supportive family. No one gets it like you all do,and I appreciate you all so much. Since receiving the "all clear" news I am now energized and have the "hurry up and make plans for the next 3 months" feeling. The Yin and Yang of MBC.
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Hello, not sure if this the right place to post my question, but here goes...
I was diagnosed - stage 4 , er+, mostly in liver but spread to lots of lymph nodes. I am set to start on ibrance next week. Got a call from my insurance company that the copay is over $2000! Anyone have any thoughts or advice on finding a way to get this at a lower cost? Thanks in advance:)
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amanda6- check with your cancer center. I will be going thru this too. I have had a great insurance with a co-pay of $35 a month. In July I have to switch insurance and I am thinking my co-pay will be astronomical then. So I will need to see what financial help I can get then. I have been told to work with my doctor's office.
Good luck.
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Amanda, I was connected with Pfizer Copay Assistance over the phone when I was scheduling my first Ibrance delivery with the specialty pharmacy. I’m on private insurance and have the whole amount covered by Pfizer. For some reason it doesn’t cover as much if you don’t have private insurance
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Amanda - Definitely check with your cancer center. They will have information on how to get a reduced rate or get the medication for free. My suburban hospital is connected to a big hospital in Chicago and they set everything up for me to get Ibrance for free.
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My MO also got me set up with Phizer for free.
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Ditto the above on the Ibrance co-pay. Pfizer has a program that is not income-related. I pay $0.00 out of pocket for my Ibrance. I'm on my 11th cycle. Maybe talk to your MO. My Ibrance comes from a specialty pharmacy. There should (must?) be a way to get your co-pay way down.
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Hi Amanda, ditto on all the above! My insurance (Blue Cross/Blue Shield) made me go through a specialty pharmacy (Accredo) who then had a representative sign me up with the Pfizer program and they pick up the $2000 co-pay. As others have said, it was not an income related credit. My insurance covered my first Ibrance order from my cancer center but after that I had to order via Accredo. It has been really easy to work with them.
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Amanda - are you required to use a specific pharmacy? When my DR first Rx'd, she chose the pharmacy, CVS branch in Seattle, she said something about a grant. The first 2 rounds were at no cost to me. Then my insurance contacted me and informed me that I was required to use their "Specialty" phramacy for Ibrance. My Co-Pay went to $50. Some have mentioned a program that Pfeizer offers for lower cost.
I'm no longer on Ibrance, was taken off of it in February because of progression. What is this talk of capsule vs tablet.? I did not know there was a choice. In june 2020 pharmacy switched to tablets. Are they less effective? Is that why there was progression?
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Ok, off the ceiling a bit now, thoughts on Foundation One. When my MO and i did Foundation One last February, she sent out my bone biopsy that was taken from my sternum at IV diagnosis and my original breast tumor. If nothing could be taken from the bone or not enough, we'd use the breast tumor. They ended up using the breast tumor. Keap1 came back but that's it. My beloved asked me why wasn't foundation one done at the start of my cancer "journey" so i'd start out on the right treatment right away instead of guessing, I told him it was probably an insurance issue - cancer guidelines don't say to do it, they don't pay and few can pay out of pocket for such tests so it just becomes a blindfolded game of "hotter, hotter", "colder, colder".I too wonder about the need for both the bone and the CT. I wonder if its related to how much you have in your bones and the locations. I wish i could get away with just a CT. I hate the prep for CT but I hate the length of bone scans.
Cakes, perhaps all isn't lost on staying on ibrance for you. Your MO could start you out on 75mg which is the lowest dose and then test you blood mid-cycle not just at the end, mid cycle they would have an idea where you would be at your lowest. Thats what they did with me my first cycle of Ibrance, tested my blood mid-cycle and then again at the end of the cycle just to see how it would effect me and to get the dose right. Don't worry about lowering the dose, many women got a long time on Ibrance even at 75mg. I started out at 125mg and after a yr lowered to 100mg due to side effects (fatigue mostly) - 12 cycles at 125mg, 5 now at 100mg and I'm on my 17th cycle overall. If your counts still don't like Ibrance, Verzenio might be good for you as it doesn't have the effect on counts like Ibrance does. Let us know what your MO thinks.
Candy, I had mentioned to MO doing every 6 months instead of every 3 after my next zometa. And when talking about it she cited studies that said the every month for 6 months or a yr for the first yr and then every 3 months the 2nd for biggest benefit, she said some say doing that for 3 yrs, but she'd be okay with me being in line with the 2 yr studies and after 2 years of steady Zometa moving out to every 6 months. I hit 2 yrs of the Zometa accounting for the time I was delayed 3 months last March in Aug/Sept. So I said let's do it. I too an concerned about ONJ and other possible long term effects of what we take so trying to get the most benefit but not take anything anymore than I have to kinda thing. In your pocket for the 19th. I wish I could do Xgeva instead but insurance won't pay unless Zometa proves to not work and it has so, shoot...shot on the butt is better than parking my butt in the infusion chair for 15-20 mins, but who cares what we want right?
Bluegirl - i think some of us have noticed a difference between the capsules and the tablets, I found the SE on the tablets to be more than the capsules - much more hairloss, constipation, fatigue etc. Shortly after the capsule/tab switch I felt I had to drop down my dosage. MO had mentioned patients having trouble finding a good dosage on the tabs. Jackie brought up the fact a few have moved on since the switch to the tabs. Not sure if change in formulation is the cause, all I know is I liked capsules better.
Aprilgirl- i feel much the same as you, "okay what can I try to cram into the next 3 months?" Just knowing i'm going to have to do this again in 3 months steals some of the relief, i should be celebrating but instead i've been crying...what kind of sense does that make? Oh, i saw this video and thought of your little bunny in the yard. I would squeal if i saw these in the backyard, too stinking cute!
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BlueGirlRedState...I was very hesitant to post what I posted regarding Ibrance. It was only a thought I had. I guess I'm just so mad, sad, etc that I progressed at all, that I'm looking for something to blame. It just seemed lately that some of us have progressed, so that thought popped into my mind. But I have no proof of that. I'm sure Pfizer has checked and re-checked the tablet before releasing it. Just me venting. Sorry, I didn't mean to get anyone worried over my stupid thought.
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