Ibrance (Palbociclib)
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Mica/Elizabeth,
Thank you for your courage, both in dealing with MBC and in sharing with us here. My heart both aches for what you are going through and admires your strength and positive, strong outlook.
I am finishing round 3 of I/F so I am just a newbie and have so much to learn from you and everyone here.
I send my best wishes and most positive energy to you as you find your way on this new path before you.
Warmly, V
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Just woke up a 4 a.m. having UTI symptoms, heartburn und a hot flash at the same time. I hate mbc!
Sorry for whining here, but everyone else is asleep in my house. The next morning, everyone will be refreshed and happy, nobody will understand why I am not, because all of these small issues plus the lack of sleep are nothing to be seen on the outside. Sometimes I have the feeling that my husband thinks I am simulating in order not to have to do household chores or take care of the kids. At the same time, I am unhappy, because I cannot fullfill my own expections any more.
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NettaGER -
So sorry you cannot sleep due to your symptoms. I suffer with severe heartburn, fatigue and overall pain. Some days/nights are good, some are excruciating. I think I can rate to what you are exleriencing.
I too get very down because I am no longer the person/Superwoman I once was. And my husband has great difficulty understanding/relating to it all. To his credit, he works very hard at understanding and accepting. But here is the truth: NO ONE WHO HAS NOT PERSONALLY EXPERIENCED THIS CAN UNDERSTAND.
We can and do understand what our MBC sisters are going through.
Stay strong and focus on something good l. I find it helps to break my downward spiral when I am feeling really bad...
You are not alone.
Warmly, V
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Who else is on 100 mg. And how are you doing on it? Just finushing my first round of 100, and kind of freaked out about it
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NettaGER, I am really sorry you had a bad night, and wish I could take it all away. I can relate and others here can share similar stories too. Sometimes it is the minor side effect that gets us down the most because it is on top of everything else. But we have to allow ourselves some slack here. I was gladly a Super Woman before my dx, (worked full time, raised 3 kids, kept a clean house, did my own repairs, made dinner every night, and volunteered many hours) and I still want to do it all, but I now have limitations. Every morning when I wake up I feel pretty good, until I get out of bed and simply bend over to put on my socks, or try to run herd on my 2 year-old granddaughter before she leaves for preschool. I realize pretty quick I just can't do it anymore, and I enabled my DH all those years because he is not wired to help much, so I did it all. Even my DD who lives with me doesn't do what she needs to some days, and I find myself picking up after her (long story). But I believe we are all Super Women because we are survivors who do the very best we can everyday. Be proud of what you can do, and relax under the blanket with a good book on the days you can't, or find your shower or spot where you can let yourself cry when you need to. I walk the beach in tears on the days I have enough energy to get out but emotionally cannot handle any more. When I need to, I just remind my DH that I can't do it all anymore and I need help...it hurts. I don't want to say this, but he needs my honesty now more than ever. And do you know what? It is in those moments that he is the most helpful to me, simply because he is there for me to say it to.
I pray for abiding help and love for each of us.
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Gumdoctor and IntoLight: thanks for your warm words. It helps tremendously to know that I am not the only person feeling this way and that you already found some ways of handling it. Now at daylight, things are a bit better again.
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Hi Gracie.
I am on 100 mg since my first dose Jan 2018. Just had first CT to assess tx response and it showed no progression. Hang in there.
Warmly, V
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Cure-ious.. I wrote you a ty la st evening but must not have submitted it.Please know your input was so helpful..My nodule was brand new in left breast only seen on PET when they were checking out liver and chest..well everything from skull to thighs..It was so very small ..I saw the 8 specimens they got and thought maybe they took all of it haha!! But path report showed this..
ESTROGEN RECEPTORS: Negative (less than 1% tumor cell staining).
PROGESTERONE RECEPTORS: Negative (less than 1% tumor cell staining).
HER2: Negative (0).TY all for being there..I'm still not sure if I had to do it over again if I would have looked at report..but I don't like surprises..Today back to normal watching hunting and fishing shows and excited to plan for iceout and getting new boat in to catch our dinner!! ALSO to put up a trailcam where we hunt in the fall..
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Great forum ladies, love that it's a private place to share good news and bad... and all the tips and tricks! So - after aborting two Ibrance attempts (125 and 100mg) due to low white counts I managed one cycle of 75mg and a week off and my ANCs were high enough to start the next one, however, after 11 days I'm down to 0.8 so they've told me to stop taking it. Not sure what the next step will be as Onco is off today. Quite frustrated as I have had no noticeable SEs (Ok - one mama bear moment in the park when a kid pinched my daughter's arm.. I shouted NO at him - quite loudly, ok - excessively loud - even shocked myself!). Shame there's no magic formula to raise those white counts.. BTW I traveled (flew) with my meds/injections to Spain no problem, however, at MD Anderson they wouldn't administer them, I had to purchase Xgeva and Faslodex again there. Apparently they have only been using Ibrance there since Jan.. Wishing everyone a good week xx
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hi gracie! Ibrance can be terrifying especially if you listen to the commercial. I am on 125mg and am just finishing my second round. My white blood cell counts did drop by i am still ok.
JoT I hope that your white blood cells corporate and you are able to stay on ibrance
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Gracie- I have been on Ibrance for almost 3 years. Started out on 125, but moved down to 100 after a few months to help with the fatigue. My scans have been clean and my tumor markers normal. I am considering going down to 75mg on my 3 year anniversary to see if I can get an energy boost. Good luck and I hope it works as well for you as it does for me.
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Good morning, ladies...
Well, I'm back on the Ibrance/Letrozole train starting today. I sure hope I'm here to stay this time around. I see lots of new faces on the board. I finished 15 Taxol infusions and it did its job. I do have horrible neuropathy I'm dealing with now. Taking Gabapentin and hoping it works.
Hope
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So good to see you back, Hope. I don't think I have ever seen anyone leave and then come back. I tried Gabapentin for neuropathy but the side effects got to me too much. Dizzyiness, stumbling around to get to the bathroom in the middle of the night. I was really afraid of falling. I also tried tumeric as suggested on this thread and it didn't do anything. My MO suggested upping my vitamin B's. She said a complex would be fine but online sources say B6 and B12 are what is needed. I'm shopping for those today. I'd be interested to know if your drug insurance balked at all about being put back on Ibrance. I've always been afraid to go off of it because of that. That they'd say, oh, it stopped working. We're not paying for that anymore. Did you hear anything like that?
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Janet....thanks for the welcome back! I haven't had any side effects from the Gabapentin. Just trying to get the proper dosage to do some good. I started off at 100 mg./ 3x a day. Last Thursday, it was increased to 200 mg./ 3x a day. The pharmacist said it sometimes takes a couple of weeks to get relief. I am in misery. Up most of the night with the burning/painful feet. Plus, difficulty walking without bouncing off the walls. Yes, I was told to take B12, also. My Inbrance/Letrozole is processed through my oncology group pharmacy. I was worried about them paying, too. But, I got a call and they got another grant for me and it's paid in full. If it wasn't, there is no way I could ever begin to afford this combo. Now, I just pray it works this time around.
Hope
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I'm in another waiting game for Ibrance, too. I'm supposed to be starting my 15 cycle and I I've never had to pay. So, I get this call from Avella and she says we'll just charge this $596 to your credit card, OK? I say NOO! She says oh i see that was for another person. I say thank goodness. So she calls back and say well we will have to find another grant for you, I'll let you know. That was last week and I've heard nothing. Yes I will be on the phone today to make sure.😕
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Good morning all
Gracie M I’m on 100 mg. I was on 125 for 8 cycles but was tired from sleeping and asked for a reduction. I hope that 100 is as effective. I’ve been on 100 for three months now. I won’t scan for another couple of months. I’ve read on here people going down to 75 and having same sustained results.
Does anyone know After you get a port how soon can you use it?
Tanya
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Grannax2, the only fund with money right now is PAF breast cancer. PAN is closed as is PAF MBC. My MO's office handled my first grant but I have done the last three myself. I just snuck in this last time with PAN but they only had money for a few weeks. My MO's office didn't want to do grants for people who could do their own. It is not hard at all. PM me any time.
http://www.patientadvocate.org/help.php?p=905
Tanya, I've been on 75 mg for two years and doing fine. I'm pretty sure that a port can be used almost immediately after placement.
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My MO said new port can be used immediately.
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it is so upsetting to me that some are stuck with wondering how they’ll access or afford coverage for potentially life prolonging drugs. I believe the issue is still not resolved in some provinces in canada. or it has been but they are limiting it to first and second line treatments only. So someone who has already failed on a few treatment lines will be denied Ibrance in British Columbia for example. I know it’s different in the states. Being your own advocate is a must. But exhausting.
Taking B6 & B12 here too.
On cycle 6 at 75mg. Scan next week and my scanxiety is mounting. Hard to tell if chest discomfort is from lung nodule or stress/anxiety.
Jaycee 2 years at 75mg! Amazing!
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Finishing cycle 17 at 100 mg with Letrozole. Still NEAD. Systemic IV chemo AC beforehand helped jump start the killing of mets. Had tumor cells in lung arteries and widespread (tumors and scattered) liver mets, plus ? on T12. Just wanted to give some positive feedback for those who are frightened. Went from wheelchair and 24 hour oxygen to walking, swimming and Zumba..all on room air. This new life with mets is unexplainable and surreal. I just keep waking up and appreciative of time.
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Jaycee. thanks for info. I just talked to someone at Avella, my specialty pharmacy, she said they do have some money available but did not say which foundation. One other time i got in a jam like this and my MO gave a sample bottle to me. I plan tobe the sqeaky wheel so they wint forget me. She said she would call back today.💞
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thanks all about port info. I ha e creation test Wednesday.
Tanya
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Grannax2, I would call Pfizer and get their application for assistance. It only requires your family's W-2 forms. You can go ahead and have it on file, then if you qualify but can't find foundation assistance within 90 days, they will provide Ibrance free.
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Sandbeach5 that is so inspiring to hear.
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Thank you everyone! I knew there were lots on here on 100 mg and 75 mg, just couldn’t remember how long. Makes me feel a little better
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50sgirl, Lynne......I just want to echo jensgotthis. Thank you for the down to earth wisdom you dispense with regularity on this forum. Your knowledge and understanding of all situations is of enormous benefit. You make a difference to this MBC world we're in.
And PatGMc......I love your positive attitude. Just lately I need it. I'm not sure what happened with me recently because I've been utterly and completely optimistic since my experience began but I've been through a little blip which needed your usual unafraid-to-be-different approach. Thank you!! I'm able to get back to where I was pre-blip. Believing I will be one of those cases that proves the stats to be too pessimistic. Every time I wonder about my future I think of you and the number of years that have passed since your diagnosis!
I'm fairly sure my cough is not a problem connected to cancer...how easy it is to link everything to cancer. Sore toe? Cancer. Earache? Cancer. Headache? Cancer. I didn't do that pre-diagnosis so it's time to put a stop to thinking that way. I've been using Ventolin for a few days and the cough is clearing up. So is the breathlessness.
Love and good luck to all who are undergoing real worries and scans xxx hugs.
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Gracie, I've been on 100mg from the beginning as my oncologist doesn't even use 125mg. I started in September-October 2016 and had a remarkable response within 3 months, then an almost complete response 6 months later. At that point there was so little uptake on the PET/CT my oncologist said it was like what would show up for a stumped toe! I started 75mg in February this year and will be scanned this summer. I pray that you do every bit as well!
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Gracie...I've been on 100mg for about six months now, after being on 125mg the previous eight months. I'm on a trial so my MO had to follow trial protocol. While my neutropenia was only Grade 3 he had to leave me on 125mg but he wanted to drop me to 100mg all that time as my neutrophils were only one point above the criterion for 100mg. As soon as my neutropenia became Grade 4, he put me on 100mg and remarked that he'd been wanting to do that all along so it's clear to me there's no problem. A registrar I saw on one of my visits told me that studies have shown that 100mg is just as effective. The preference is to keep us at Grade 3 neutropenia, which I am now. Unfortunately, it still takes me two weeks for my neutrophils to make the grade to start a new cycle. I'm now on cycle 14.
Sandibeach...thank you for your positive feedback.
Netta.....you're not whining. This is the place to come when things get on top of you. I know what you mean about being awake while the entire household is having a refreshing sleep. I'm fortunate that my husband and son are very understanding and my son is grown up. I can have a nap during the day which helps a lot. I'm so sorry you're in this position. You don't need to apologise. None of us do if we need someone to offer some understanding of a difficult situation xxx
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WHAT. THE. HELL. I haven't looked really really hard, but I haven't seen anything on this forum/board before right now about the cost of Ibrance. I don't have to take that. I pray I never will. BUT an acquaintance of mine does and when she told me it was $10,000 a month, I honestly thought she was confused. I couldn't believe it. But I looked it up, just casually thinking the price was going to be something normal. But nooooooooooooooo...And I am asking you...grants?! HOW THE HELL CAN THEY GET AWAY WITH CHARGING THAT MUCH?! I don't think ANYTHING they can tell me as the answer to that question will justify in my mind a reason that this medication can cost so much. I'm furious!!!!
And just in case anybody may think I want something for nothing, that I'm using the 'victim' card, please understand that is not the case. I've never been one to complain about the price or value of another person's product. My husband and I are both self-employed. I know that we all need to make a living.
Did I mention I'm furious? I don't know...am I the only one who feels this way? Can someone please explain? Can somebody give me even a half-good reason why Ibrance is so expensive? And if you say, "cost of recouping money from doing medical trials" or something like that....unacceptable to me....that's their company's cost of doing business. That should NOT be passed on to cancer patients especially.
(end of rant) Grrrrrrrrrrrrrrrrrrrrrrrrrr
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Hi Beth, I don't want to get in an extended back and forth on this. I agree the cost of drugs is completely ridiculous. Between Ibrance, Letrozole, Xgeva and Lupron, I think I’m something like a $30 to $40k per month patient. It’s shameful. Today, I am also incredibly grateful that Ibrance exists and that most insurances cover it. Grant programs are covering the rest for a good number of people here. This drug is giving lots of us more time and this support community is focused on this
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