Ibrance (Palbociclib)
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Lynn...Sending you my thoughts and prayers. I hate this damn disease! Know that you are receiving many hugs!
Hope
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Joyneri- Just logged on and learned about what you're going through. I'll be thinking of you too. You sound strong and we're all here for you.
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Oh Lynn. My dear friend! I've been laid up with a terrible cold and UTI and haven't been on the board ... and I come back to this!
One thing I'll mention is that my MO is actually extermely positive about the options coming fast and furious for second and third line and even beyond. Cure-ious has indeed, as always laid it out really nicely.
And there's so much in the pipeline for further down the road. Like Cure-ious, I've also been keeping my eye on Alisertib, which I suspect will prove to be a breakthrough when used in combo. Here's the latest, showing its impact, now with late-stage lung cancer:
https://www.fiercebiotech.com/research/two-pronged...
Please, please, please keep us updated and let us know what we can do.
Hugs,
Penny
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Joyner; I am so sorry you're going through all of this....especially the stress of not knowing exactly what is going on. I too am adding my prayers for positive results. It's amazing how much a very small thing can hurt so hoping it's an easy fix.
Cathy
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anyone here experienced gas and bloating while on Ibrance? I’m also on Faslodex. Started last week and seems to be hanging around longer than I thought it would. Tried Gas-Ex but doesn’t seem to help. My stomach is rumbling and gurgling. Was worried it may be ascites but my stomach is flatter in the morning and gets bigger after I’ve eaten. No other swelling.
Jill
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Lynn, I will be here praying while you sort this out. Not knowing what's happening in your body can be so distressing but I know God has this. You can't mess it up.
With love and a really big hug from PatGMc
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grrifff: I too am experiencing a bloated belly, full feeling, loud gurgling all night, no gas but the feeling I need to 'go' is constant! I shot a pic to my friend just yesterday afternoon asking why it appeared I was 7 months preggers!! I've been on the I/L combo plus Lupron for 5 days and my Tamoxifen Blubber Belly which I managed to get rid of in the two years after finishing has come back. I am drinking a lot more water so as to not become dehydrated, the drug rep Onc nurse said to drink lots of water to help keep side effects at bay, maybe that is the cause
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to those in a rough place . .. you are in my thoughts, Stay Strong . . . Wimp is not a word I would useto describe anyone on this journey!
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joyner you are in my prayers. There can’t possibly be that big of a change since october. i’m thinking of you:
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CrazeeJane how are *you* faring? Is your infection under control?
Holmes that is my hope/thought for Joyner -- how could there be such a huge change since only October?!? I hope we hear from her soon ...
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Holmes - good to see you. How are you feeling? I’ve been thinking about you.
Love to all,
Laure
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Joyner I haven't been on for a few days, completely shocked to see you have been in the hospital. I assume you know by now what your MO wants to do. Because of my scare in September, I've learned not to change treatment until progression is confirmed by at least two scans and a BX if possible. My PET scan looked like progression and my MO was planning to change me to AA. We even ordered it! Then the liver MRI did not show anything in the area of interest. So we almost jumped the gun#
Tomorrow I will have liver MO to compare it to the one in September. There were four tiny areas of concern. I'm praying they haven't grown. Anxiety has begun.
You are one of my heroes. Anyone who can survive that trip you went on in the boat, can do anything. How many miles was it, a zillion it seemed to me.💞
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Lynn,
Thinking of you and hoping you got some answers and a good plan today!
Especially praying for pain relief and less malaise and Nausea.
Sheesh!!! How can thing be stable forever so long and then take a turn. I totally get the nerves over getting your Ibrance.
Hugs coming your way friend!
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Lynn, griff, crazyjane, grannax and all the others facing tough days, my thoughts and prayers are with you. Take are of yourselves and know we are all here for you. Kitty.
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An observation of a single patient with liver mets on Ibrance / letrozole, experimenting with 3 weeks on 1 week off, vs 5 days on and 2 days off. My friend, after 8+ months on I/L (75 mg ibrance) was stable in her liver mets, and tumor markers using the standard regimen of 3 weeks on 1 week off. She switched to 5 on 2 off and saw an immediate drop in tumor markers. After many months on 5 days on 2 off, she switched back to 3 weeks on, 1 week off. Tumor markers rose. She then switched back to 5 days on 2 off, and after 2 months, experienced her lowest tumor markers yet, and best liver and blood values at 1.5 years into treatment with I/L. I think that for some patients, this might be the best dosing regimen. Hopefully we get results from a clinical trial soon, confirming whether or not this treatment schedule is superior. The idea is that more frequent breaks are better for the patients immune system / blood cells but that not having a week off, gives the cancer less time to rebound.
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Husband11..do you know what trial that would be?
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Out of curiosity, anyone else experimenting with 5 days on/ 2 days off Ibrance?
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SandiB I think that cure-ious mentioned this plan several weeks ago ...
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I just returned from a 12 day trip to Houston. My husband was with me for the first 5 days so he was on his own at home the remaining time. So - I have job security at home and need to keep going with my health.
My tumor markers when down during my last visit for the first time while on Ibrance (started in May 2018). I was pretty excited. Made my trip to Houston more enjoyable. I know those vary a great deal but at least I had a chance to relax a bit.
I missed lots of posts and hope my "blog buddies" are doing OK. I had lunch one day in Houston with 3 lady friends - all 4 of us have or had cancer - 3 breast cancer and 1 with throat. A popular club we are in.
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I tried the 5 days on/ 2 days off for about 2 months. I had been on Ibrance/Letrozole for 18 months with barely ever being sick. On the 5/2 regimen, I got a fever that I couldn't shake-it took me almost six weeks for my temperature to stop spiking. Needless to say, I am back on 21/7. It seems that "something" happens to my white blood cells to strengthen them during the 7 days off. I think they haven't figured out what exactly happens to the white blood cells on this combo. I've been neutropenic the whole time but except during the 5/2 regimen, have not been sick.
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Hi lauren! I’m doing really well. Thank you for thinking about me.
wandering- i’m glad you had a great time in Houston! That’s wonderful about your tumor markers!
joyner- how are you doing sweetheart
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Good morning! My adorable husband disparages people who are, as he puts it, "stuck on transmit". Therefore, I shall try to be concise with my update. I am so enormously appreciative of all of your support and kind words or wisdom and science. I've been getting myself back together.
Saw my onc on Tuesday. For background, he is head of a cancer institute in RVA and appears to be revered by other big-time doctors. I do trust him. He describes himself as "an old doctor (he's not that old) who has seen a lot".
He described himself as "bewildered" by what he sees: essentially clear PET scan in early October (and in July) and then 13.7 levels of calcium, elevated creatinine, and acute renal insufficiency on Nov 26th. He has ruled out parathyroid issues (by hormone test) as explanation for calcium and sees no other explanation other than increased activity in cancer. He is studying proteins lest there be something very unusual afoot. He said that BC "just doesn't act this way".
I made an opening statement asking if I might have another 30 days on Ibrance/Faslodex while we studied this enigma, since it has felt like my magic shield. He listened thoughtfully and then said without any hesitation, "NO! This combination has failed. We will need to make a change". He suggested again that it might be to Verzenio with something else. His associate, who saw me over 5 days in the hospital, had suggested the possibility of Affinitor and an AI (I'm ignorant here so I may be misquoting, but in any case, they weren't exactly at the same place and are going to consult).
Meanwhile, he has ordered an MRI of the brain for tomorrow (some minor headaches and neck ache), another PET scan (Monday), did a 2-day blood culture on Tuesday to eliminate blood infection (some hard chills after hospital and low body temperature), and sent me to the orthopedist (next Tuesday) to try to eliminate cancer as the cause for hip pain. Maybe it's arthritis? If not, he says that he'll radiate there.
New medicine to be determined based on results of all above. I was supposed to have started cycle 24 of I/F TODAY, and I am atwitter at not having my capsules!
I suspect that I made a spectacle of myself at the onc office, hugging everyone in sight after my disturbing meeting. Now I have rallied a bit and feel stronger, and I have decided that 1) my brain is fine, 2) hip pain is arthritis, 3) I have no blood infection, and 4) the PET will be manageable.
We shall see. Janet, I laughed as I went into the doctor's office on Tuesday as I envisioned you "breaking several rules" in my honor that day!
I love you guys….and now I'll get back to paying attention to your problems!
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Joyner, before I get swallowed up by work I just wanted to send much love and big higs!
FYI I've had aches and pains all around that have indeed turned out to be arthritis. I'm sure it's beyond terrifying but there's a lot you outline that sounds reassuring too. I'm going to count on 1-4!!!
Love,
Penny
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P.S. I've been checking the board every hour looking for an update. Don't listen to your DH!
Now hoping to hear from Grannax too ...
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“ 13.7 levels of calcium, elevated creatinine, and acute renal insufficiency on Nov 26th. He has ruled out parathyroid issues (by hormone test) as explanation for calcium and sees no other explanation other than increased activity in cancer.“
Hi JoynerL... were you by any chance on xgeva? Did you by any chance stopped xgeva treatment?
Some of the symptoms you've described could be attributed to the SE from the withdrawal from that medication...
I hope you get the help you need...I send you my best wishes of a successful resolution
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Lynn, wow--withdrawal, arthritis, progression oh my! It is so complicated and so many of you are so knowledgeable. I am reminded of my mom who always said to just tie a knot and hang on which is another way of saying to hold on to faith. I have many emotions this week for many reasons I won't go into now, but mostly thankfulness for you all.
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Oh, IntoLight, I hope that you're okay!!
Miaomix, interesting question! I have been on Xgeva, first monthly, the every 3 months, and onc had just decreased to every 6 mo. I wonder......
And, he has now put me back on it monthly (though haven't gotten the dose yet; got something else in the hospital: a 2-hr drip of Pamidria(sp?), which was awful and gave me a very sleepless, painful night. Also a bone med.
Penny...you're simply the best!!
Grannax, what's going on? I've been wallowing in my own woes and missed yours?!?
xox
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I just posted an update to my financial assistance (for Ibrance) saga in the steam room, if anyone is interested. (I am dealing directly with Pfizer now.) I may have been "stuck in transmit" and it is too long but I want to get all the info out there for those who may want it. BTW, Lynn, this process gives me lots of opportunities to break a few (several, many) rules.
Lynn, I'm so glad things may be starting to calm down. Isn't that always the way? You get a jolt of some unexpected change and have to take some time to process and breathe. I hope you are getting there.
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I have been off the boards for a few days. Logged on today and catching up.
Joyner- you are in my prayers. Keep us informed on the MRI and PET results. Scary how we can be "stable" and then BAM.
IntoLight- I know. Sometimes I just get tired of trying to stay one step ahead of the cancer and research what could be or will be happening.
Take care all.
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