Ibrance (Palbociclib)
Comments
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Radagast,
I just looked at my report -- on the face page under genomic finding, it ways "2 disease relevant genes with no reportable alternations: BRCA1, BRCA2" - also, on p. 1 of my appendix, it says "one or more variants of unknown significance were detected in this patient's tumor -- there, it lists the following: BRCA2 S3366fs*4 -- so look maybe at your appendix and see what it says?
BTW, I really have NO idea what that means on the appendix page, but it's there.
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Hu sband, Prayers sent for you and your wife.
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RadagastRabbit - My MO had Tempus done which would also be genomic testing just like Foundation One. Anyway, quite honestly, I just had him explain it to my husband and I because we could not make heads or tails of what the report meant.
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reference the new packaging for Ibrance:
Paper inserted with meds does state to not cut or crush the Ibrance tablets and to store in thei original blister pack.
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Confirmed by emergency, my wife's hemoglobin has fallen to 65. A repeat of what happened in late December, early January. I suspect her liver is getting clogged up and its increasing hepatic blood pressure, leading to distention of GI blood vessels. One must have burst.
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Husband,
I'm glad your wife is getting the care she needs. How scary this must be. Prayers for you both.
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She just texted me, saying they are giving her 3 units of blood, something to try to stop the bleeding, and they are going to do an emergency endoscopy.
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I'm sorry, Husband. This must be so hard on both of you.
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Husband 11. Sorry to hear this news. Hopefully your spouse is comfortable and they figure this out.
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Husband11, I'm here praying for a resolution to your wife's problem and I'm praying that you both get some peace about this. I wish you could be with her but I know she feels your presence.
With love from PatGMc
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Husband 11- You guys are in my prayers.
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Next time there's a pandemic please remind me not to live in NYC!
Anyway, just finally popping back in after weeks and weeks to say hello. I've been ensconced in our Manhattan apartment with my husband (who has been valiantly fighting to save his business) and my teenage twins (seniors in HS who are coping with everyhting COVID-19 means to the end of high school and beginning of college).
It's been pretty nuts in our little city. It's hard to describe. I see there's been much happy news and some very challenging developments too for a few of my old friends. Those of you who remember me know that I came on when my kids had just started HS and I was devastated by the thought of everything I would miss. Now they're (sort of) graduating! I hope that gives hope to the newbies – just like my great friends here (Hi Pat! Hi Cure-ious! ) gave so much hope to me way back then.
I miss every one of you! On to cycle 42 tomorrow!
Hugs,
Penny (the old Penny that is
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P.S. Many prayers for Husband and his dear wife! How difficult and frightening for you! My heart goes out to you both ...
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PNW - Ciaci is right! Good memory! My MBC was diagnosed without a breast tumor. It is extraordinarily rare but does happen once in a hundred blue moons. I can tell you more about what I know. But tell me -- how was yours diagnosed as BC. Was a biopsy done?
I'm happy to provide more info! My DH and I have scoured the earth for information about this. Post here or PM me if you'd like.
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Thanks all. Current plans are that she may have to spend up to 3 days in the hospital. They are giving her platelets and some other drugs to try to stop the bleeding. The endoscopy suggest the bleed was in her esophagus. They couldn't do anything during the endoscopy to fix it.
Unfortunately because of covid 19, no one is permitted to see her. That's very hard on all of us.
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PNW, my MBC was also diagnosed without a breast tumor. Mine was dxd by a biopsy in a lymph node under my arm. Even with my current progression there is no breast tumor.
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I just decided to look in on this thread which used to be one of my main threads when I was on Ibrance. Husband11, I’m sorry for this current crisis. It must be so hard to be excluded from the hospital where your wife is. Good on you for getting her there. I am sitting with you as you wait.
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Rabbit, regarding the “disease relevant genes with no reportable alterations"— I believe they are just telling you that they checked for mutations in three often-mutated genes in breast cancer, and found that your sample did not have mutations in those three genes. So nothing going on there. The reason they look at BRCA genes is that even when a person is not BRCA-positive, meaning they have not inherited any mutated BRCA genes of the sort that cause breast and ovarian cancer to run in the family (a germline mutation), sometimes the tumor itself can acquire a BRCA mutation (a somatic mutation). In this case the person does not have a BRCA mutation in all their cells; it is just in the cancer. But the same drugs can work in both cases, so that is why they check. BevGen, the BRCA mutations in the appendix are ones they found in your biopsy sample, but they do not know if they are harmful or not. Most of these variants of unknown significance turn out to be not harmful. They note it in case more information becomes available.
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Husband11, our hearts go out to you both and prayers continue day and night. Hope this too will pass soon and you’ll be back together shortly.
Blessings on you both and quick recovery.0 -
DodgersGirl, I would call your specialty pharmacy and ask to speak to the pharmacist (the pharmacist, not the clerk or tech who answers the phone). Tell him/her about your problems with the packaging and with the size of the pill, and see if they can offer you any alternatives or acceptable solutions.
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ShetlandPony— thank you for the suggestion. I will call tomorrow.
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Husband11, thankful you got your wife to the hospital and hope the transfusion does the trick and she gets home soon, feeling better. You both are in my thoughts and prayers!
Shetland Pony, great advice - I love pharmacists, they are so smart and helpful (my sister is a pharmacist).
FoundationOne - I will ask my oncologist on Friday when I go in but why doesn't everyone get this test? I have already had a genetic mutation test done. I was tested for BRCA back in 2008 which was negative and in 2018 my general practitioner encouraged me to get more genetic testing done since more testing is available. I went back to my cancer center, had testing done (blood test) and tested postiive for the ATM mutation. This put me into a special cancer clinic for pancreatic cancer screening last summer. Ironically, breast cancer recurrence was not discovered at that time as it didn't show up in mammograms or breast mri's.
SInce I tested postive, my mother and sisters were tested. My 84 year old mother and both of my sisters also have the ATM mutation but I am the only one that has had cancer.
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They are, aprilgirl, and sometimes people forget what a good resource they can be (pharmacists).
It’s good you got the genetic testing so you and your relatives can get proper screening. Five relatives of mine have been tested for the mutation I have. Two have the mutation, so they are getting extra screening and taking other measures. Knowledge is power. It used to be that only people with a certain family history got tested, but in the past few years there has been a movement to test more people. For example, some professional organizations now recommend any woman with premenopausal breast cancer, or even all women with breast cancer, get testing.
Foundation One, as you may know, is a different sort of test. It is a genomic test to see what mutations the cancer (not the person) has. It is often used when a treatment change is needed, since some of the mutations are “actionable” ; that is, there is a drug to target them.
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Shetland Pony, thank you for your response. Yes, because my original dx occurred when i was 44 and premenopausal it raised a lot of questions. Every few years it seems more genetic links are discovered. I am relieved I took the test in 2018. I wish I would have requested a petscan when i got the ATM result but since my mammograms and breast MRI's were clear and I had no symptoms, the doctors had no concerns.
I have not been offered the Foundation One test, but since my stage IV dx my onc did test me for the PIK3CA gene which I don't have. I will ask about the Foundation One but since Ibrance and fulvestrant seem to be working and I haven't been on them long, she might not order that one.
I am so thankful for all of you and learn so much! I got my Ibrance today, and received the new tablets. Dodgersgirl, you are right - the packaging is huge!
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IntoLight- I hate hearing that you’ve gotten bad news. I know we were “in the bonus” after two years on I/L, but we want good scans to last.
Xeloda seems to work well for a long time from what our friends here have experienced. Sending hugs your way!
Penny- I’ve had assistance from Pfizer and from a Cancrr Care Foundation to cover the cost for 4 1/2 years. You are worth it!
Jaycee- yeah...sometimes I feel my middle finger locking up, too! One of our cherished friends here used to say “Not today, cancer, not today...”. This is a way to say that in sign language...or it could be a stage IV SE
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Question for the de novo ladies-
My breast tumor is/was up and under the nipple (which retracted). Due to a prior reduction I don't have much feeling in my breasts, but yesterday man was that nipple hurting. Its been hurting a bit more today too, but not like it was for about an hour yesterday. I have seen significant change in the breast in the last five cycles, is this more of the tumor breaking down? Its like an itchy, deep pinching if that makes sense. Its really more annoying than anything else but its new so thought I would check.
Still wish I could just get this boob removed completely.
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BevJen and Shetland thank you for helping me try to navigate this report. Thank you Shetland for the explanation regarding those genes, MyRisk genetic testing had said I didn't have BRCA 1 and 2 and was about to say whhhhhhhaaaaattttt if this thing showed different. At the same time I was hoping both tests would provide more answers... my mother has Stage 4 ovarian and here I am with stage 4 breast, but no genes to explain both of us getting aggressive cancers.
Husband, still thinking of you and your wife as you deal with this together but separated.
Last pill of cycle 6 today. I did want to share something positive regarding Ibrance. My MOs nurse called me Monday morning to say my tumor markers which had been trending up since February just went down 11 points! I was almost afraid to type and share that if they just go back up again next month. But I thought I'd share anyways to say I guess sometimes it takes longer than 3 months to start to see progress and so I'll take my 11 point drop as progress. Also I've noted for the past month a reduction in pain by a few ticks, I'll take that as a positive as well! I've been really afraid to take good news as ACT failing so fast still has me bitter but it's okay to savor some honey (good news) I don't have to be a sour patch kid regarding good news. I'm not an expert in being positive especially with Stage 4 cancer, but I'm trying.
Isn't it a shame we don't have a flavored coffee to celebrate our bond together?
Thinking of yo ladies and gents0 -
Sondra; Didn't you have a lumpectomy? The literature is leaning this way for de novo, surgery and radiation afterwards. I was fortunate to have an aggressive BS and then was referred to radiation in March. You may want to address this with your team.
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RadagastRabbit— congrats on the lower tumor markers!!!!
I have scans next week. Kinda nervous about them. My TM have gone down with each blood test since January. Sure hoping scan results match TM results
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My wife will be in the hospital until at least Monday. She sent me a text saying they believe its a stomach ulcer. They have her on some sort of chemical treatment that has to continue for 72 hours. It sounds like she is being treated well and I took a care package to the hospital this morning for her. Some personal items and other needs plus a bonus, a water color from our 3 year old granddaughter! That should make her day.
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