Ibrance (Palbociclib)
Comments
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Woohoo KatyK !!!!!!! Crazy that we are happy when someone is doing their job. Hope you have turned the corner and your appointments go this well from now on.
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KatyK - I can so relate. Congratulations. Enjoy this great moment
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Hi everyone, one week and one day on AA and I'm still alive! Lol. I have some of the normal SE and some I didn't expect and one I expected and it has not happened. Go figure.The ladies on the AA thread have answered a bunch of my questions, PTL. They are really taking me under their wing. Overall I think I'm doing okay so far.
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Just some numbers, folks, if you are interested. I just got my first shipment of Ibance for 2019. The price went up about $400. What's weird it is that my insurance totally picked up the increase. What Humana paid was about $1000 more than last January and what my grant paid (co-pay) was about $500 less. Some artifact (sorry Candy but I love that word now) of my insurance maybe. I'll know better when the numbers stabilize next month.
My MO visit was calming and uneventful. Yes, she wants a Pet this month. I scheduled it for Jan. 23. I probably won't get the results until I see her again Feb. 5. (Unless I get pushy and I can't see myself doing that.) I got to see and be treated by my original onc nurse who was with me at the beginning. She retired a year ago but fills in sometimes. It was wonderful to see her. Katy, it is so much less stressful when we are treated well by our healthcare providers. It should always be that way but it's not.
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grannax, I just took my 10 year old to nyc for his birthday and we had a blast. Unfortunately, we both got the flu and I was hospitalized last night. My neutrophils were at .76 so not so great. I’m stable and enjoying the view.
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Txgatata. Beautiful, I never think of NYC as having beautiful scenery. I will be careful, sorry you're in the hospital. So is this pic in Georgia? And you got home before you got the flu and had to be hospitalized? I got the flu last year I sure don't want a repeat. NYC is so highly populated, I can imagine you could get exposed easily. That ANC is not good, get better fast. I won't have time to any sight seeing so maybe that will reduce my chances.💞
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Thanks for the info. I’m still waiting to see if I’ll get any assistance this year. It kind of puts everything else on hold until I find out. My last call to my MO medication advocate “hasn’t heard anything back after sending in the request”. ☹️ Very happy for all who are getting assistance. Living is getting so expensive. Glad neither my husband or I are not government employees. I can’t imagine how they all must be feeling these days. ..... it’s akways something!
Take good care all! Suzy
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This is in Canton, Ga. Flew back Monday, got chills and fever so they admitted me yesterday. If I could do it all over again, would wear a mask on plane but hated to do that with my son. Don’t like him to see me that way. I was also surprised to be so low. Today was my last scheduled dose of Ibrance. Lord knows what it would have been at Nadir
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Jaycee -- I can relate to what you said about our interactions with health care providers should be good all the time but are not always...these few times they are good are gifts...enjoy
I wondered if Ibrance price would go up...thank you for that confirmation. The Army has it negotiated down to about $7,000 per month. While I am still active duty, I do not have to pay anything. Another gift.
Gumdoctor
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Glad all is well so far with the new meds Grannax. Txgatata - such a bummer that your trip landed you in the hospital but it sounds like it was worth the time spent with your son.
Gumdoctor - You deserve free meds - Thank you so much for your service to my country. Bless you!
Love to all,
Lauren
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Had my PET scan yesterday, and as expected, I fell asleep. Within two minutes of drinking the cherry stuff during the "quiet hour", I was out cold. Nurse had to shake me awake, LOL. Then once I was prone and sliding into the scanner, I dozed off again. Suddenly I hear "okay, you can put your arms down". Made for a very quick day for me - I was only awake for about 20 minutes of my 2+-hour appointment. My poor husband sitting in the waiting room was wide awake, though! I usually drive myself, but he thought I was too tired after being up all night to risk it... also slept another hour after I got home. Will get results on Tuesday.
Proudtospin, I also go to MSK in Middletown for my scans and bloodwork, and I love it there - everyone is always so supportive!
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Txgatata;
I remember someone suggesting quite a while ago, to rub an antibiotic under your nose when travelling or out and about in busy places to help ward off the germs. I believe it's Mupirocin ointment. I got some but haven't used it yet and needed a doctors requisition. Enjoy all these wonderful trips with your son.
Hugs, Cathy
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Good morning everyone. I have a question for everyone on Ibrance - I was wondering how many people are doing an alternate dosage schedule of five days on two days off. I saw some past posts that perhaps a few people were doing this largely due to low white blood cell counts. I’ve been on Ibrance for eighteen months at 125 dose and my white blood cell count has been o.k. but I have read that perhaps this alternate dosing schedule may be more effective and in some people it helped to lower their tumor markers. My tumor markers have been rising even though my last scans looked good and the MO doesn’t know why. I will have scans in a few weeks again and hopefully they will continue to be good. I talked to my MO about the five days on two days off and she was not opposed but decided to stay with same schedule right now. So anyone on the 5-2 schedule and if so how is it going? Are your white blood cell counts better and has it impacted your tumor markers? Thanks
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KatyK,
At MBC dx in DEC 2017, I was supposed to be in the ibrance 5/2 study at Washington University but did not do it for reasons related to ONC I have discussed in previous posts.
Some of our BCO friends may be in the study or their MO put them on this schedule before the study is finished. Hopefully they will chime in to assist.
Gumdoctor
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Ciaci. What pink stuff? I never have been given anything prior to my PETS. Your husband is right, don't drive yourself. One year ago, I tried to drive myself, with no caffeine, and had a wreck, totaled my car. I wasn't hurt and my friend rescued me and took me to my PET. 😨
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ciaci and Grannax I never drank pink stuff. We have an injection and then lemonade. I take a Valium for the machine enclosure anxiety so someone has to drive me home or they won’t do it.
Gumdoctor thank you for your service. I’m so fatigued by Ibrance that I would be no good for any military assignment. God bless you.
Tanya
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Tanya,
Thank you for your thank you. I enjoyed my work and my 18 hr days and working on the weekends for many years in the Navy, Navy Reserves and now in the Army.......until the Army failed to diagnose me for over 3.5 years. Their negligence in unfathomable, but it does not take away from what I was able to do to directly help patients, and help superior and subordinate dental officers and staff provide the safest care possible in the dental world.
I may or may not have explained that they will not allow me to work right now. I am attached to the sick and dying battalion, officially called the Warrior Transition Battalion. I am now allowed to live with my husband and have to report to Ft Campbell Kentucky only twice a year. It is not as nice as it sounds, be at home and collect a paycheck. But I am very grateful that God is providing income for now. I will lose $2,000 a month in May 2019 but will continue to get basic pay. They also will start the medical board process in 2 months to discharge me. Long story that may or may not have a good ending...too soon to tell...God is in charge, not the Army.
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Gumdoctor wow.
Deep sigh they have a name for this batallion.
I pray they give you all that you deserve and much much more from the mercy of God.
I love your statement that you use army not in charge God’s in charge. I’ve read it before from you. It really keeps things in perspective.
You are not alone with the prolonged diagnosis. I hope it didn’t adversely affect you and that ibrance works fantastically for you. I had a recurrence in 2017 and I was actively under the care of an oncologist since my original diagnosis in 2003 but we kept having mammograms and it came in my ovaries, abdomen and bones. I accidentally found it through an orthopaedic Dr who I went to for a fractured disc. I have no idea how long cancer was growing in all of those areas but God knew and that’s that.
Tanya
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Ah Tanya, thank you for your kind words and support. I also have written about my civ ONC, at Washington University, who was arrested for attempting to strangle his estranged wife and threatening to shove a butcher knife down her throat...I understand his apathy towards me (and likely others) now. But I have to move forward regardless. Praise God I do not have to deal with his apathy anymore.
I am very saddened to read your story but am very grateful you are here with this group. It seems we each need a certain level of support, the level of which is constantly changing. It seems we also are able to support each other through some impossible times. Finally, it seems we understand it is very difficult for others to understand our journey unless they are here, right in the middle of the same journey.
I can absolutely say BCO is helping me learn to thrive in the middle of this MBC nightmare. After hearing that "mets" word, I knew what it meant. Mentally, I dug my grave and then sat in it, pouted, cried, screamed...wallowed in the self-pity of it all. I did that for 2 or 3 weeks...then I started looking for an escape route from that horrible experience...and found BCO.
I immediately found so many role models...so many courageous, amazing women who have been on a similar journey but ahead of me. They have figured out many of the hard things we each need to learn along the way. They showed me what living and even thriving with MBC can look like. I could instantly see a much different, much better way to approach MBC than where I started.
Praise God for you and everyone here in BCO.
You are not alone. None of us are alone.
Gumdoctor
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Ah Tanya, thank you for your kind words and support. I also have written about my civ ONC, at Washington University, who was arrested for attempting to strangle his estranged wife and threatening to shove a butcher knife down her throat...I understand his apathy towards me (and likely others) now. But I have to move forward regardless. Praise God I do not have to deal with his apathy anymore.
I am very saddened to read your story but am very grateful you are here with this group. It seems we each need a certain level of support, the level of which is constantly changing. It seems we also are able to support each other through some impossible times. Finally, it seems we understand it is very difficult for others to understand our journey unless they are here, right in the middle of the same journey.
I can absolutely say BCO is helping me learn to thrive in the middle of this MBC nightmare. After hearing that "mets" word, I knew what it meant. Mentally, I dug my grave and then sat in it, pouted, cried, screamed...wallowed in the self-pity of it all. I did that for 2 or 3 weeks...then I started looking for an escape route from that horrible experience...and found BCO.
I immediately found so many role models...so many courageous, amazing women who have been on a similar journey but ahead of me. They have figured out many of the hard things we each need to learn along the way. They showed me what living and even thriving with MBC can look like. I could instantly see a much different, much better way to approach MBC than where I started.
Praise God for you and everyone here in BCO.
You are not alone. None of us are alone.
Gumdoctor
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Hi all - I have a new insurance starting in jan and received my first Ibrance shipment from the new specialty pharmacy. They included the Ibrance welcome kit. Does anyone want it? I am am happy to mail it. It has a pill case to keep track and a bunch literature to document side effects and a matching notebook in a little purple case. Let me know!
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Just catching up on a few pages of posts, so here I go with some random responses.
Lauren, good to see you, where you been, girl? Congrats on the good news!
Someone mentioned keto diet (Wandering?). I tried it for a month last July with DH. I was wicked tired that month, but labs were ok. After that, however, things really started to change for me, and not for the positive. It may be total coincidence, but after that my labs started to tank, I had/still have major SE's, and had to reduce Ibrance from 125mg to 100mg.
Someone asked about in person bc groups. I went to one when I was originally diagnosed, and it was a hot mess. There was a newly diagnosed stage IV woman there, in shock and struggling, and she and I spent the hour crying together. Then a bc survivor who also had a stroke basically took over the meeting. I was so traumatized I never went back. Now, I would only go to a stage IV meeting. Like with all of you. I live 20 minutes from Napa, so we'll spend the day sipping wine and nibbling on cheese.
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Hi all, just to clarify, it was "cherry stuff" I drank, not "pink stuff", LOL - it's the contrast MSK uses, mixed with Crystal Light. They have refrigerators there with dozens of 1-liter bottles of Poland Spring water pre-mixed with it, and after they give you the nuclear tracer injection, they slap a label on it with your name and birth date, give you a tall straw, tell you to drink "at least half", and leave you to sit quietly for an hour. In the waiting room beforehand, at least half the people are sitting there with their bottles (those getting just CT scans). It looks like some weird commercial...
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jaylea I will totally sit and drink wine and nibble cheeses with you in our in-person support group!!!
There's one Stage 4 in-person support group about a 45-minute drive (during rush hour and the rush hour traffic time is NOT included in the travel time) from me. It meets twice a month in Wednesday evenings. I want to go and check it out and then again, I don't really want to drive in rush hour traffic to get there and also I am award of how sensitive I am to others pain/grief (I am a total empath) and I am worried of how it will effect me emotionally. I went to the LBBC MBC conference last year and it took me about 2 full weeks to regain my “normal" after that.
To all those having scans this week - I am holding you in my thoughts and heart.
I am feeling slight anxiety as I did a couple intense physical workouts out and now I feel like I can feel a lump in my right breast above my nipple. Everything is sore in my body from the workouts and I don't know if I'm imagining it or not. Seeing my MO on Monday and will discuss. Blood work today!
Happy Friday and hugs to all!
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good morning ladies, to recap my condition, found lump in breast July 2017. Of course immediate surgery was recommended. My surgeon and I were not in synch so I saw my new ONC and asked her if surgery had to be done immediately or if I had time to get my emotions under control. (long term issues with depression, panic attacks, OCD, phobias etc) My Onc said you have time I can put you on an anti hormonal for 6 mos. then we can make plans. (it was
Arimidex (anastrozole) So, 5 months into this treatment a minute increase in breast tumor appeared via sono gram. Next Onc. Nurse Pract) she never discussed the increase, but said that I could stay on Armidex for up to 5 yrs. She said that's all some patients ever do. So, I totally changed eating (became vegan) started exercising and felt the best that I had in years. However, a CT scan in 7/2018 showed lung nocules. End of Oct. I thought that I had broken my right femor so a bone density test was ordered and showed mets in 4 areas of my skeleton. Along with lots of arthritis and 2 compression fractures and bad bone density.Onc put me on Ful/Ibrance. Well, it's been three months. Time to see if treatment is working Mon. I saw my Onc. she seemed concerned that the breast tumor was not decreasing. Ct and bone scan were done this past Tues. Onc said they would be in touch by end of this week (which is today) with results. My treatment is working or it isn't. The waiting for results is becoming unbearable. Just a few minutes ago,, I found that the bone scan was submitted to my portal. This normally does not happen until I speak with Onc. The thing is, I have no real clue as to what it says. If I post it here, would someone kindly give me your opinion? I realize that your not docs or rads but anything to get thru this fog to acceptance will totally make my day. Make I copy and post my Bone scan results? My deepest thanks, Sue
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hi Snooky - please feel free to post your results. I don’t know if any of us are medically trained to properly read labs, but some of us may be able help. I have medical training and may be able to offer input.
Try to get some fresh air, breathe while you wait. I know it stinks! And they shouldn’t have posted your results yet without talking to you. Sometimes they screw up. We are all human and make mistakes when it comes down to it. I am currently at Labcorp waiting for my bloodwork to be drawn. The nurse forgot to put in my script for the lab work, so it’s taking longer than usual. Thankfully I set aside enough time.
Best,
Phy
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Snooky,
1. Three months is way too soon to see results from Ibrance.
2. That was a big mistake for them to post those results before you could talk to your doctor.
3. I would not be able to interpret any scan reports. (lovefromphilly, this is not blood work)
4. It's FRIDAY. No one in healthcare where I live works after noon on Friday. I don't know how far east you live but I would start calling people NOW and maybe drive to onc's office if you want to know what the report says. I would get really pushy because it was THEIR fault that you are in this situation.
Snooky, I love how you have come out of your shell since you first posted here. What a change in confidence and attitude. I'm impressed.
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Jaycee, Thank you for your thoughts. And you're quit right, I've definitely come out of my shell. I've always been a bit of a hermit/loner but I realized that that has to change. Thanks for your reply. And I would bet you're right about the Fri. issue. I had a Fri. afternoon apt a couple mons ago and the place was empty. Receptionist told me no one works on Fri. So thank you for your comfort.
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Snooky I read or misread my own report. Get on the phone or in the car and get your results. Sometimes they leave early on Friday.
Tanya
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Jaycee and Tanya, Yes I've done that I called the office and told the receptionist that I expected a phone call today. She totally understood and I'm waiting for my nurse to return call. (I have same nurse each time) Thank You for telling me to do this. So nervous brain not functioning.
If there is no call, I'll be at office first thing Mon. Morning.
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