Ibrance (Palbociclib)
Comments
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I agree with Changedmyname on the importance of exercise and know how frustrating it is to not be able to do what you used to do physically. It has taken me a long time to build up strength and stamina for walking, etc. I'm still not where I used to be but wanted to share what I found helpful. Try using "hiking poles" for longer walks. It makes it much easier and also exercises the arms. Check out aqua exercise/water aerobics. You can even just walk in the pool. It's amazing how much easier it is to move in the water. I found it was a good way to increase my mobility/range of motion and it translates to above ground movement. I can feel zero energy but after aqua exercise I am completely rejuvenated so give it a try.
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Good ideas, Chicagoan. No pools within 45 miles of me but I really need to push myself to walk more. I really do try. But when I give out it's almost like a collapse. So, there is some fear along with the frustration.
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Well Ladies, we all seem to be sorting out our pill box regimes... me too and my 7 day box does help me remember what day it is even though I'm still working and have multiple diaries! Side effects are also common in the 'come and go' fashion... I can be complaining about one thing one week and then it's fine the next.. the night sweats, sore hands,fatigue and bowel issues are all constant - my MOs just shrug and now so do I. Live when you feel good and rest when you don't seems to work for me, although it's not always convenient!
Candy - in the UK everyone is entitled to NHS National Health Service care ' free at the point of delivery'. And it is truly great... although not perfect and very stressed. My nearest cancer centre is the Beatson (worth googling). I collect my Ibrance there and it is only a short drive in fairness.
BUPA is private health insurance .... mainly paid for by private companies - although I pay my own policy which started with my husband's work policy which stopped when he ceased working for them and we continued on as a personal policy - mainly because BUPA will cover an incurable diagnosis. Most insurance companies will ditch you as soon as you become incurable. Shocking!
As I said I have not used BUPA because I think they will hike the policy premiums. Saving them for when I am in real need. They do give me 'cash back' of £100 per cycle of Ibrance because I have that treatment on NHS. I have to claim it, but so far BUPA have paid up.
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I've meant to mention this for a long time but Karen's comments made me think of it. Do any of you have an AFLAC cancer policy? Did you know that your aromatase inhibitor and XGeva are considered chemotherapy by them? On my policy they pay $300 each for 3 different chemos in a month plus one anti-nausea prescription. They will also pay $500 one time (I think I'm right on that figure.) for a "cranial prosthesis" (wig) regardless of what you actually paid for it.
You dancers are so impressive with those organizational skills! My meds are in the kitchen window still in their little plastic bottles nestled midst dust and whatever has splashed on them from the sink. Works for me! In 30 months I've not missed any but did unknowingly double up once....the night the meteor burned my gut all night! It took me until the end of the cycle to realize what caused that and it was kind of a relief to know it was human error. (The various incarnations of pill organizers are gathered in the garage holding a rejection support group....Bless their hearts.)
I'm thankful to say that today's check-up once again showed counts either in the normal range or just below it. 30 cycles and on 100mg, I'm not going to complain. We agreed to scan again in June. I asked to go back to doing it every 6 months and I love how my doctor doesn't try to push me into more. He's such a lovely man. He took me to show where he had the Hope Up support group flyers displayed. He's excited which touches my heart.
Love from PatGMc
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Hi everyone. Hope to join you here, am an oldie on BCO.
A bit about me. Was first dx'din 2012, stage 3, grade 3. Poison, slash, burn IDC. 4 years Arimidex, about 1 year tamoxifen. Quit both because of se. Started having pain in non ca side in February. PET/ct lit up 3 nodes. They're coming out Wednesday.
Surgeon says it's recurrence and I'm “technically “ stage 4 Hard to wrap my brain around that
New MO wants me to start I/l. I've checked with my insurance co, the copay for 1 month is over $1900.
How on earth do people pay for this?? I called the company today, they are sending me an application. But I'm afraid if it's income based, I'm sunk, due to a stupid move by DH. And then there is the doughnut hole. How you you deal with that
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Spookiesmom, your MO's office should help you with funding of this drug. It can be done. It takes time and patience but it can be done. And don't worry about the donut hole. After just one month of ANYONE (you, your insurance, a foundation, or Pfizer) paying for this drug, you will immediately drop through the donut hole. I was surprised by this at first but it is not just what you pay but what any entity pays for the drug for you that puts you in a new category. Unfortunately, I think it is called "catastrophic." My income is low enough that I qualify for foundation assistance (500% of the Federal Poverty Level) and Pfizer assistance. There are several kinds of Pfizer assistance depending on what kind of insurance you have. They all also have different qualification criteria.
I spend HOURS reading (staring) at websites about these programs. They do change quite often and it is hard to keep up. Others will post easier ways. I like to make it a game/contest/battle/war. And I like to win.
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Well, if I shoot through the hole, that would take care of my insulin too. That’s expensive too, but not nearly as much as ibrance.
If I can just stay alive, relatively healthy till next year, I think the gap will disappear. Think that’s what I’ve read.
I was in MO office today, the person who helps ppl with this is supposed to call tomorrow. Hope the message didn’t get lost. I guess if I worry about this now, I can’t worry about the surgery.
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You must have better drug insurance than I do. My first copay hit of the year for Ibrance is more that $3000. Subsequent months this year have been $634. (Of course, I don't pay any of it myself.)
I wouldn't wait too long for the MO's person to call you. I'd call them, maybe around lunchtime, and leave another message. This is definitely better to worry about than surgery. Hope it goes well. Let us know.
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Pass right on by the negative sentence and hold on to the hope that this is what we've been waiting for, Dancers!
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Amen to what Jaycee said about applying for assistance, Spookiesmom. You don't have to be poor and this can happen pretty fast. Apply for everything that's out there!
Can someone post all those links for Co-Pay Assistance again?
Love from PatGMc
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Yes Pat — yes!
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The first two are foundations. They rarely have any money for BC or MBC. They used to but not any more. They got caught with their fingers too deep in the pie. The last is obviously Pfizer programs. They set up more availability after the foundations got virtually cut out. Wouldn't want another Epi Pen situation. Pfizer WANTS patients to be able to get Ibrance. They just want to maximize their profit. It's business, right?
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Morning ladies. Good discussions. As far as fatigue and exercise, I do envy the ones that still have energy to do the things they always have done and love to do. There are not many of us, but once in a while someone posts about their activities and how the cancer really has not slowed them down. I try to walk on the treadmill for 30 minutes 3 times a week---at the slowest speed, haha. And I still do the weekly grocery shopping for myself and my disabled sister. I work full time--at a desk job. But the old energy, stamina is not there. I was texting a friend this morning. He was off to work, 8 hour day on his feet the whole time. Then to bank, polling place (today is our local elections), and to a college class he is taking tonight. He will be back home around 10pm tonight---he left home at 7am this morning. WOW. I told him to thank the Lord for his energy level---it is a true blessing not to take lightly. I miss those days in my own life.
Karen- Thanks for responding about Healthcare in Scotland. The United States certainly needs to work on our system.
My plans for the day--- vote, clean house, and walk on that treadmill !!!
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Thank You❤️❤️
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I was funded by PAN this past year for Kisqali and have been approved for April 24 but I'm off of it so I will not be using my grant and will lose it and those funds go to someone else applying
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PatGMc:
Thanks for the info! I will look in to it.
DivineMrsM:
Good for you for correcting him! I had a similar experience once.
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PatgMc, Thank you for the link about MSK and CAR T. It is the future, I think, and I hope it arrives soon.
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I'm not sure where to post this, maybe someone can re-post in other threads where this has been discussed?
AACR2019 meeting reported that, for those diagnosed with mets de novo it helps overall survival to have the primary tumor removed (44% reduction in the risk of death). The study was for HER2-positive patients, but the way they describe it seems likely to be true for ER-positive patients as well. They say that because everyone is living longer with current therapies, they are now seeing the benefit to having surgery and getting the tumor removed.
https://www.onclive.com/conference-coverage/aacr-2...
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Good afternoon all
Jaycee you made me laugh with the smithsonian can display ibrance historical pictures.
I have my 75mg bottle of ibrance in my top drawer in my bedroom. I tried the pill organizers first year and marked the calendar. Got tired of that regimen. I’ve marked it on calendars and phones and have now evolved to my memory. Sometimes I forget to take it at the right time but as long as it’s a “normal” day I am consistent with it.
My history is original diagnosis 2003 stage 3 lobular partial mastectomy and such. Adc red devil stuff, taxol, taxotere, radiation and then arimidex for 5 years. Reoccurrence in 2017 Mets to bones ovaries uterus, complete hysterectomy. Radiation and Ibrance zometa and faslodex. 22 months. Definitely feeling the anxiety for upcoming scans in May.
I realize from reading here and from my life I could’ve been more proactive during my sweet cancer fee time by being educated and informed about reoccurrence. I did attend all my Onc appts and mammograms but didn’t pay attention to anything outside of breast. Pap smear didn’t reveal anything ever. If I would’ve discovered it earlier then I still would have it ...
I used to run/walk marathons with my friends. Spin class aerobics etc 3 x’s a week. I’ve gained 30 lbs since diagnosis. 3 back surgeries have taken their toll on exercise but I can still walk and swim.
Thank you all for the chance to read about your challenges, new treatments, activity level and how you take your pills.
Tanya
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Cure-ious--- Thanks for posting the article. I am de novo I guess. Found the mets 3 months after the original diagnosis, but we know it had to be there for a while---large liver met and bone mets. I had mastectomy BEFORE we found the mets. So I am hoping this study would include my situation. But I do have organ involvement, so... Hoping for the best.
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patMg: So glad to hear about your great checkup!!
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Cure-ious and I too am hoping that study might relevant to me as I am de novo and no primary was ever found.
Thanks as always for the terrific information!
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Hi ladies, I am new to this thread. I was diagnosed with METS on 3/6/19 after being in remission for almost 3yrs. This beast spread to my bones and now I'm off Arimidex and on Ibrance, Faslodex, Lupron and another injection to strengthen my bones. I started ibrance this week and I'm having a bit of anxiety. I'm worried about the side effects.
Also how do you manage the pain from bone mets? I'm trying to live a normal life for my family but my body hurts. If I take to much Advil it tears my stomach up. Any other suggestions on pain management? How about acupuncture ?
Thank you!!
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Has anyone seen the news that came out today on CNN that shows that surgery for the primary tumor may give women with stage 4 cancer a 44%;better chance of survival? Makes me wonder if we've all been given the best advice not to remove the primary tumor.
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Enjoyed reading posts I'd missed...Blessings to you all...Last Dr.visit BP way elevated think I wrote about that.yeh I did 😃.Went to GP yesterday got another bp med.started today..Had to have one increased in Oct..This elevated bp happened to me years ago on arimidex...Yesterday I had that flu feeling some of you spoke about and I went to bed at 10...so rare for me.!!!! Feel great today but respite included long nap..I felt so well the other day didn't even take one..!!!The new dose .as of Dec.from 125mg to100 mg has made such a difference...esp in my energy..Sure I forget things..have some hair loss but not bad:: one sideburn often looks. like a chia pet..I have to use so much jel I can hardly get my glasses on😄.
I liked reading about what you all do for exercise..I slacked off this week but will start tomorrow😂..Tennis and bowling on my wii.Someone wrote about 20 min walk 3xs a week .That's my goal when it warms up a bit and not so windy..Scary memories of last summer and the extensive mets to lungs and unbearable humidity and having to stop to breath even on short walks.And then someone spoke of swimming. I live on a lake and except for getting my feet wet..last summer nothing..But after I had Mets to lungs in March I had a mastectomy in May cause they found triple negative..and then that resulted in lymphedema month and half later .So as I write I say Sharlene no wonder you feel so much better..Thanks all of you for being there!
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Elenas,
I posted a link to that story above. The recommendation is practice-changing in that it is different from what most people were advised in the past, namely don't bother to remove the primary tumor. The problem is that the primary tumor is a continuous source of cancer stem cells that could give rise to future mets, and apparently does give rise to problems because they see it is causing lower overall survival. So, because we are now living so long (and the study was of HER2 patients, where the drugs usually work for a really long time), the data is now showing that there is a clear survival benefit to removing the primary.
So, Candy, it means it was well worth you going through your mastectomy after all!! and for Penny, this doesn't apply because there was no detectable primary tumor to remove, so there is nothing left to be a source of future cancer stem cells. Its the people who left the tumor in, probably especially true for large tumors, who now have to decide whether or not they want to go back and get the tumor removed.
Cancer stem cells are a very small part of a primary tumor, which is why some say we need to focus on what drugs do to stem cells, not to the bulk of the primary tumor. The major part of the tumor may shrink, but if the treatment isn't killing or arresting the cancer stem cells as well, then it won't be blocking metastasis..The newer targeted drugs today are mostly thought to kill or arrest stem cells in addition to the mets.
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Ho Momdin. Welcome to this site although I am sorry you have to be here. You may find the side effects from Ibrance are minimal. The pain and side effects are usually the other meds and the mets. You may need to ask your onc about pain relief. I was told not to take Advil because of the stomach and liver issues, so I only take Tylenol. There are other things you can do. Acupuncture is worth the try. Exercise actually helps. I find a 20 minute walk makes me feel better even when it is my back that hurts. I am going on almost 3 years on Ibrance and doing well. I am sure the other ladies will chime in once they read your post. Keep asking questions and this community will try to help. We understand.
Chris
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Curious, I meant relevant in the sense that it might be a positive prognostic factor that I don't have a primary. I'm always looking for evidence that might be the case. My situation is bizarrely unusual with virtually no precedents that I am able to find. When there is no primary there is virtually always lymph node involvement and I don't have that either.
Momdin, my pain was mind-boggling but I'm happy to say sonwas the pace of relief once I started the combo of meds. I wish you the same
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momdin, I received radiation both times mets were fond in my sacrum and spine. It stopped my horrible pain in the back
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