Ibrance (Palbociclib)
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May I just stop in and say Roll Tide?! What an SEC Championship game! It's a good thing I'm convinced I'll have a long MBC life because that game took a year off the back of it!
Love from PatGMc
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Happy birthday AdyMaria!
I drink red wine when I feel like it - which is usually if I’m out to dinner. Every once in a blue moon I’ll have a glass at home in the evening. My doctor said to just practice moderation but that a glass or two here and there was not a big deal (for me). I don’t take any pain medication at all.
Thanks for all the love 💕 from my eye doctor story. I am still feeling so blessed with the outcome.
Love to all, Lauren
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Funny how we get different responses... my oncologist said not to drink alcohol. Period. Alcohol, in any form, increases estrogen levels in the body, and our goal here is to NOT take in more estrogen while we're using the AIs to eliminate it. Her actual words were "don't, if you can possibly avoid it". Well, I can tell you that I can't possibly avoid eating chocolate for the rest of my life, but I CAN avoid alcohol, so I haven't had a drop since my first Ibrance capsule on August 1, 2017. I guess we all choose our own poison, LOL...
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I forgot to post this pic last month. My husband and I went on a cruise, and I tried the parachute jump simulator (like my avatar picture, when I went ATV-ing, this is something I never would have tried pre-cancer!), and had a blast. My husband's a terrible photographer, so only got this one picture, when the guy was turning me toward the camera. I went really high, well over his head, and it was such an amazing feeling; my husband said he was too busy being impressed to hold the camera up again! But anyway, for what it's worth - this is my new normal:
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Ciaci - what a cool picture! I’ve heard that is an awesome experience and I want to try it!
Pain Sufferers- I don’t personally have pain at this point; but I saw an ad for this device and wanted to share it in case it is helpful for anyone:
https://www.accupoint.net/painrelief
Love to all,
Lauren
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Sooo I am currently sitting in the ER with an infection in my port site incision. I had it placed on the 14th and tonight a bunch of thick green goop came out of the one side of the incision. I called the hospital here and the nurse said to come in right away. They have taken some blood and a swab of the wound and now I wait. Sometimes I feel like if I didn’t have bad luck I wouldn’t have any at all. My oldest son is here with me and we are both frustrated.
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Today at church we lit the first candle of Advent, that of Hope. Wishing everyone a beautiful start to this holiday season. To our new friends, may you feel welcome here. Post at will, nothing is off the table.
Pat, Bay Area football is currently unwatchable, so I'll happily follow 'Bama, though I do have a fond spot for the Irish, what with Joe Montana and all.
Ciaci, love that you're out there living your life to the fullest!
My MO said ok to have a glass or two on occasion. I used to love, love, love my wine but this treatment just doesn't agree with alcohol. That said, I will have a martini or glass of wine if we go out, more for the ceremony of it than the taste or effect.
Edited to say Crap, Crazeejane, sending prayers your way for best possible outcome.
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CrazeeJane - unfortunately those port infections are not too uncommon. I hope yours resolves really quickly!!! Thanking of you heart
Love to all,
Laure
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Girls (and boys), I'm having a bit of an issue. Does anyone know whether the Jan 2018 update of Anne Loeser's wonderful Insider's Guide to Metastatic Breast Cancer is the most recent version? And if not, how to request the most recent? Many thanks-
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Ady....I have a glass of wine or two with dinner most nights. I eat and drink whatever I want. I have no side effects whatsoever from Ibrance.
Hope
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JoynerL - I just received it and it looks like it was updated in November 2018. I think she has a process for getting an updated copy. Or if it is OK, I can forward it to you. Send me a message with your email if you want me to forward it.
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Joyner - thinking of you. Let us know if we can help with your issue.
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Melb44, yes, thanks. That would be great. I think that I probably do have the most recent version but I'd love to compare them. I'll p.m. you my email address.
Lauren, thanks for your nice message. For the moment, I have gone from Little Mary sunshine to sliding down the hill into a heap. I was in the hospital for 5 days last week, and I meet with my oncologist tomorrow to see if I I am experiencing progression, and if so, what to do about it. Scary time for now.
Hugs to all hyphen
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Oh no! Please keep us posted on how you are. I am praying for no progression for you and I hope you are recovering from your hospital stay. Lots of love to you!
Lauren
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Joyner - I am so sorry to hear you have been in the hospital for five days
what happened? We are all here for you. Sending you so many hugs. Please keep us posted on how you are doing.
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Joyner, sending prayers of strength and support across the country to you and your family. Sounds like you're preparing yourself for what might be next, should the need arise. I think that's the best and maybe only way to wait out scanxiety. I'll be thinking of you tomorrow and hoping for the very best.
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Joyner, I'm so sorry you're having a hard time and I promise to pray hard for this to turn around. I know you have a lot of oomph and can handle a lot but we shall add our oomph to yours to see this through.
You are loved,
PatGMc
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Lynn, What's happening? I don't recall anything about what you are going through, as you usually chime in to support everybody else!! From your notes you are still taking Ibrance-Faslodex? Are you having new issues with liver or lung? It's scary how everything can turn south in a hurry, but the oncologists are there to pull out the big guns when we need them, move us back to stable...
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https://community.breastcancer.org/forum/8/topics/...
Hi Joyner. Try clicking on this topic. Email your request to bestbird@hotmail.com.
If new to the complimentary guide, you have to read terms of acceptance and indicate in subject line.
If returning and would like an updated copy, just say returning in subject line.
I am concerned you were in the hospital 5 days. Hope you are finding your answers.
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Thanks to all of you precious people. It's like having a family that you only see on a computer screen, but they're there, just as much as the family you can touch and hug. I am truly blessed with both sorts of family. Thank you for all of your kind words and prayers.
Here's a [sort of] quick synopsis of what has happened:
All was well until early November when I had pain in my left hip and assumed I had pulled a muscle (I got to the gym several times/week).
Pain didn't go away as expected and gradually got worse. Meanwhile, I started have a general sense of malaise with nausea (but no active throwing up) around the edges.
On November 20th (Tues before Thanksgiving), I faxed my onc, as directed, with general symptoms/concerns and asked if I should come to see him. I got no response and didn't want to bother them right at Thanksgiving. By Sunday, I was feeling really sick, struggling to stay upright without going back to bed, feeling very nauseous, and my hip hurt a lot. My husband pronounced that he WAS taking me to see my onc on Monday morning.
Blood work was so "off" at onc's office on Monday that nurse practitioner thought it wasn't mine and tested again. It was mine. Hyperglycemia (13.7 calcium) and high levels of creatinine (sp). Onc sent me directly to the hospital. Test revealed "acute kidney insufficiency". I'm starting to freak...and to throw up by this point. One kidney fine, the other partially blocked (not sorted out yet). Has cystoscopy with stent inserted. Hip pain getting worse.
My understanding of cause and effect is this: cancer in bone (perhaps) more active, causing calcium to be pushed out of the bone into the blood stream, which caused kidney problems which caused malaise and nausea and lack of appetite, sending me to the doctor.. Another benign possibility was the parathymus (?) overproducing calcium, but that seems to have been eliminated as a possibility. Initial simple x-ray doesn't show a fracture of the hip.
Onc preliminary assessment is that the cancer has become more "active" and that there is probably progression within the bone. Hopefully not beyond, but to be determined. By PET scan this week, I think. My last two PET scans (June and early October) showed NEAD. And now this!
In any case, it terrifies me to think of leaving Ibrance for something else. Onc suggested when he sent me to the hosp that it might be to Verzenio, which he described as the "latest and greatest" for my situation, but he said that he had kept me on Ibrance (and Faslodex) because I was doing superbly on it. His associate, who is also excellent and was on duty at the hospital and saw me every day, seems skeptical and mentioned going to an AI and Affinitor.
I meet with him today at 1:00 and get my Faslodex shots. Janet will understand that I'm about to break out in hives because I have to order my Ibrance TODAY if I am to start it on time on Thursday of this week. I'm wondering if he would let me stay the course for one more cycle while we sort this out more clearly. On the other hand, if he says that this is an emergency, I know that I have to be a big girl and be prepared to do what needs to be done.
Thank you for listening sweet friends....and if you have any thoughts to provide before I head to Richmond and the grim reaper, I'd love to hear them. My appointment today is at 1 Eastern time. You all are all so brave and strong, and I'm being a wimp.
xox
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Joyner, you're not being a wimp at all! I'm adding my prayers to the others', hoping for the best possible outcome for you!! And at 1 PM, I'll be crossing my fingers!
Sending you love and light...
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Joyner...sending prayers and concern your way...
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Lynn, I have been thinking about you every minute since your original post. Don't really know what to say. My MO said she would switch me to Afinitor and Aromasin (trialed together) if I/F failed. I just wonder, and would ask, if I/Fas (your combo) failed, how do they know which drug failed? What about trying Ibrance with an AI? I am going to be reluctant to take Verzenio (comes with a free bottle of Imodium, not for me) or Afinitor. I've heard mixed opinions of Afinitor. Just write down all your questions, take your time and get them all answered. Make them slow down for once, make them wait for you to think and ask follow up questions. Sometimes, I go back and sit in the waiting room and think about the questions and answers and send more questions back to the doctor.
Break some rules. Little Mary sunshine needs to be maybe Little Mary rainstorm. I know you can't be Lille Mary tornado but a little wind might be good. And I'll break several rules in your honor today. Not a problem.
Still thinking of you every minute, every second.
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Lynn - you are def not being a wimp. It is so normal to feel fear at a time like this.
I second what Jaycee just wrote - take your time with all your questions and don’t be afraid to be bitchy and angry and all of those things.
Sounds like you are still gathering all the pieces of the puzzle together to understand the big picture of what is happening. Just remember that you are in the “gathering information” stage and that once you and your docs have enough information, then you can make a decision about what direction to go in at this time.
Sending you a big huge bear hug and will be thinking of you at 1pm today!
Brenda
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Joyner - Please know I am thinking of you, praying for you and sending you peace and comfort, good juju and all else I can muster for your appointment today.
It just seems unreasonable that the cancer in the bone has spread to the point of impacting your kidney function in a matter of 60 days. The whole thing seems suspect to me and I am still hoping that some other explanation is at play here. Have your tumor markers risen or any other indication of cancer activity, such as phosphatase? How extensively were your original bone mets?
Jaycee has the best advice for you and I will also break a rule or two in your honor. Demand answers until you are satisfied with the explanation and the next steps.
Lots of love to you!!!
Lauren
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You girls are the best! I love, appreciate, and will take your excellent advice. I have been studying like a fiend so that I have good solid questions to ask. Janet, I particularly like your question about how to know which of the two medications, if either, failed. Onward!
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Thinking of you Joyner! Prayers for clarity and wisdom for you and your docs. Prayers for a total cure for cancer for all of us.
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Lynn, I just want to add my love and support here. Ask questions and demand answers. You are not a wimp--you are a brave adventurer. Saying prayers for you throughout the day. Chris
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Lynn, It's my daily question as well- how will progression look, what form will it take, and does it involve whatever pain or stiffness I happen to be experiencing at the moment. At diagnosis, I had mets in all bones (including skull) that clearly had been growing away for a long time. It elevated my blood calcium, and since I was late on my yearly exam I didn't realize that was happening, and the whole thing was discovered when I went to the ER with a kidney stone. The Xray showed a kidney full of stones, and what looked like met-degraded bones everywhere. Confirmed with CT-PET.
So sure, I could imagine some increased calcium from newly-awakened mets chewing away at some bones. If that is the case, I'd want to know if they will do a new biopsy, which they would do for sure if mets had moved to liver or lungs. I assume they can get enough sample from a bone biopsy to see if it has new mutations that can be treated with drugs.
So two things mentioned there were to switch the Ibrance out for Abemaciclib, which is stronger, or switch the faslodex out for an AI. It depends on why the cancer is now growing again. The most common reasons are that it turned on PI3K pathway (mutated the PI3K kinase) and is now no longer growing on estrogen but rather on sugar, or it developed the ESR1 mutation in the estrogen receptor, which makes the receptor turn on the cancer growth genes even without estrogen around, or it could have developed both mutations, or other mutations like convert to triple negative or Her2 positive, or get FGFR amplification, etc.
The point is that if you now have PI3K mutation, Abemaciclib may work against it but you also would need the Alpelisib (hopefully will be FDA-approved some time soon) or the Affinitor-Aromasin, because the Alpelisib or Affinitor are hitting the same PI3K/mTOR pathway (albeit at different points). If you have the ESR1 mutation, that may be degraded by Faslodex (if you were on Femara) or there are other SERDs in trials that especially degrade ESR1. So, the short answer is that you would want a biopsy to prevent possibly spending months on something that won't work.
What part of the country are you located? Are you near anyplace doing major clinical trials? Good luck, you got this..
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Cure-ious thank You so much for laying that out. I think your post is so helpful for all of us — you have such a brilliant way of explaining things — and I hope Lynn is able to ask these questions today and at minimum get a biopsy to search for the best next step.
I hear you on the elevated calcium being possible with increased mets, but an NEAD scan in early Oct makes the whole thing less plausible to me. So I’m still holding out for alternate diagnosis causing this problem. Regardless - we are all with you Lynn!
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