Ibrance (Palbociclib)
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Gumdoctor, think about what BevJen said. I love my medical oncologist and I would feel weird going outside his recommendations but I've learned from fellow survivor friends that, naturally, doctors believe in their own specialties. Medical oncologists concentrate on systemic treatments. Surgeons think in terms of operating. Radiologists believe in using the equipment they study on a daily basis.
Let me stop and put on my bossy hat again.....
I would seriously think about a consult with an interventional radiologist, not waiting for the Xeloda. Tell your MedOnc we badgered you into it.
I did have a woman in support group who was four years out from having her single liver met removed by a surgeon. That would be my other choice before Xeloda.
Stopping to remove giant bossy hat.....
I promise I won't mention it again because you have to do what gives you peace.
Much love from PatGMc
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PatgMc,
Thanks for sharing your stories. Those were so uplifting.
Gumdocter,
I laughed so hard about you giving a high five to the nurse. I would have loved to see his face when you did that.
All of you ladies are so awesome. I am so glad I found this community.
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Simone, Thank you for enjoying the story. It was actually another patient I said this to and high-fived with. The nurses looked up from what they were doing and giggled...
Gumdoctor
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BevJen and PatgMc -
The main reason the MO wants to avoid any procedures at all right now is not that she does not want me to do any or consider any. I have a HUGE blood clot in the portal vein. She showed it to me on the images. It is huge and scary and Mr Liver brought Mr Clot along to join the party.
I know I am just a lowly periodontist dental Doc (laughing at myself as I write that...), but I know clinically, this patient the MO and I are discussing (me) is not a candidate for any surgery or procedure right now. Blood clot gets attention first. Started Eliquis bright and early Tuesday morning.
Once blood clot is under control, we can start to think about localized therapy and the things you are suggesting.
In the mean time, we have to do something with the liver met...systemic therapy. After looking into Afinitor and Xeloda carefully, I/we chose Xeloda.
While I do love my new MO Dr "Angel," I also agree with her on this plan clinically. It makes sense to me and I am at peace with it.
I will research the things you are suggesting. I will be seeing MO in 2 weeks for bloodwork and checking in after starting Xeloda. We will have lots more to talk about...and as you suggest, I will tell her YOU MADE ME DO IT!!! 😎
Gumdoctor
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GumDoctor a I can just see you brightening up the entire chemo center with your exclamation and high-five! I am smiling big just thinking about it. Thanks for explaining your MOs rationale on hormonals. I agree we need to tackle this liver thing hard from a new angle, but I’m just not sure hormonals are ruled out forever.
I do agree with Pat though that gathering options from other specialists might be worthwhile. I don’t see why you couldn’t do that in parallel with starting the Xeloda. I wouldn’t want to delay that at all, especially because I know you have challenging logistics.
Thanks to all for your sweet response to my adoption story. It warms my heart.
Philly - I am so glad your sore throat is getting better. I have to look up mucusitis - thanks for that insight from your MO. Hopefully you won’t lose your voice too. I do still get my monthly illness, some months it is worse than others and it has skipped 1 or 2 months along the way. We did a culture last month (jaycee’s brilliant idea) but nothing showed up. However I did learn that I don’t always need to take an antibiotic when I get it. I didn’t last month and it resolved on its own. So it’s just my thing now. Everyone I work with is starting to get used to my crazy frog voice once a month.
Love to all,
Lauren
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Maureen- welcome here. I wanted to let you know that I have a friend in my town with stage3 disease. She is currently on Ibrance, as well. I wish you well with your pet scan results but it’s possible that you just have a creative cutting-edge oncologist and not an indication of stage 4. Keep us posted.
Love to all,
Lauren
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Dr. Gumdoctor, I briefly forgot about Mr. Clot so I'll calm down. I know you're going to make the right decision. God has it all in His hands and you can't mess it up even if you're just a lowly educated-out-the-wazoo periodontist!
We all can take a deep breath and be glad none of us met up with Dr. Strangler.....also that you have Dr. Angel!
Love from PatGMc
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PatGMc - You are just too hilarious. You are going to make my new party guests, Mr Liver and Mr Clot, hurt from all this laughter...
HAHAHA
Gumdoctor
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Lauren - Thank you for your encouragement. I will pursue these add'l options vigorously. Mr Clot has his foot on the brake and his hand on the steering wheel. A little like car-jacking eh?
The car-jacking/car metaphor comes from a wonderful lunch visit with someone I knew very little. After our visit, I now know her much better. She works at Lowe's and we have been friendly over the years. I am a frequent Lowe's flyer as where I live, there are 2 garden shopping options, Walmart and Lowe's. Woo Hoo!
Recently, she told me during one of our checkout conversations that over 2 years ago, I said something to majorly inspire her to do something with her life. I think it was probably along the lines of life is short...make sure you are doing the things that are important to you.
Still at Lowe's, she still wants to move on to something better. I told her we could meet outside Lowe's and I took her to lunch yesterday.
As it turns out, she has an extremely challenging life, with uniquely difficult obstacles. We talked for 2 hours and I did my best to listen deeply, understand her challenges and give her some great suggestions to consider. But I know helping someone is best when you help them to help themselves. I made my best effort to do that too.
Since I stopped working in Dec 2017, I have had no one to help but myself and husband and kitties. Granted, we need alot of help (hahaha) but the kind of helping I have done over my 31 year dental and military leader career, and even before that, has been completely absent all this time.
Why I even bring this up here, it appears she is really stuck in her life and needs to overcome a great deal to get moving again. I used a car metaphor...ok, you need to go somewhere and you have that old car that hasn't been driven in forever...you have to put gas in it and likely there are belts and fluids that need attention...but you don't need to worry about any of that right now. The first step is to find the key to open the door...
I didn't even think of suggesting Uber until just now!!!
This metaphor is powerful for even me. So often I (and possibly others...) get stuck and we get so overwhelmed with ALL OF IT that we cannot even imagine ourselves getting unstuck. But remembering all we have to do right now is go find the key...makes it much easier.
Applying this to my current arrival in the liver mets universe...all I have to do today is go pick up the Xeloda. I don't even have to take it until tomorrow. How easy is that?
Almost as important, for those 2 hours, I felt useful again. I hope she thinks about 1 or 2 things I suggested and can move just 1 of her stumbling blocks 5 feet. And if not, I received the great gift of feeling temporarily useful again.
Gumdoctor
PS - Thanks for reading...I should probably look into starting that blog I want to do eh? With so much to say and write?
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Gumdoctor - you are an inspiration! Helping others gives us purpose, yes, but what you must have said to this woman 2 years ago was awe-inspiring for her to still be ruminating over it. And then to take her to lunch to coach her on her life.... that's amazing! And I love your car analogy. You should absolutely blog. You are a beautiful writer and you have so much to say!
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Gumdoctor, I would absolutely subscribe to your blog!!
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Gumdoctor, I'm having trouble keeping up with all of the back and forth -- all of the advice and your replies. (Though I have a vivid memory of Mr. Clot!
Apologies if this has already been asked and answered, but was there any talk of possibly enrolling you in a trial for another CDK4 inhibator with Falsodex? Several months ago when it looked like I had progression to the liver, my MO said the next step would be to enroll me in a trial of ribociclib and F. Again, so sorry if this has already been suggested, or it's just one too many pieces of advise! My heart just goes out to you knowing the stress you are feeling and I wish I could help!
Hugs,
Penny
P.S. Oops to Gumdoctor! I see you are already being treated with Falsodex. So sorry for jumping in with that not-helpful suggestion!
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So I'm here in my MO's office. I just got the report that my neutrophils have plunged to 700 and I'll need to go down from 100mg to 75mg. Bummer! To think I was just sitting here thinking I should share some of my tips for keeping them high on this board. My DH's face went a little white. I told him that a lot of my friends here have been on 75mg for a while and are doing well. I've got that right, don't I?
The other thing .. she started saying that maybe I should get a biopsy so we could see if I'm a candidate for Apelisib and Falsodex. On that one, *my* face went white since I've been told a few times that everything being picked up on my bones is "sclerotic healing." On that one, my DH went into action and quietly ask her what there is to biopsy? "Oh of course! There's nothing to biopsy, your're doing fine, everything looks good, just sit tight and stay the course." She's really terrific ... usually super focused ... I know they were back up and she was dealing with emergencies ... but it was one of those rare times when a slip really could have sent me into a tizzy. Isn't it crazy how we hang on every word?
Anyway, I'd be very glad to hear some 75mg girls weigh in!
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hi everyone!
Oh candy that would totally spin me out.
Today it's really hot outside and I had to get my blood drawn for my labs.
I felt a couple strong waves of dizziness? Or loss of balance?? This was both before and then after the blood draw.They came and went pretty quickly and I tried to drink some OJ for glucose and then ate a hearty breakfast sandwich.
I always get freaked out that I'm having progression with any little symptom!
Both Ibrance and letrozole and I'm sure Xygeva and Lupron have the known side effect of dizziness...so I am aware. Plus the heat!!
Pat - please don't stop regaling us with your stories. I love them and they lift me up so much!! 🧡🧡🧡🧡💛💛💛💛🧡🧡🧡
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Penny, 75 mg for 37 cycles.
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Penny- 75mg for 16 of my 18 cycles. Started out at 125mg and changed to 75mg due to low counts.
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Gumdoctor, I often wonder if we won't look back over our lives and find what we thought were the small things were actually the big things. When I read your sweet inspirational story it made me think about the verse from the Bible where Esther was "created for such a time as this".
You may be changing everything for your Lowe's friend and who knows what good she will go on to do because of it. I love that sweet circle of love in this world.
Who was it who said, "We're all just walking each other home"? Isn't that the truth?
Friends, now that Gumdoctor has inspired us bigtime today I recommend the writing of Anne Lamott. You can find her quotes on Twitter but I highly recommend any of her nonfiction books. (I haven't read the novels but they're sitting in a box waiting for me. I bought the whole "lot" of them used on eBay.) My daughter is going through an especially hard time and I find myself sending her Lamott's quotes almost daily.
Penny, there are people on this thread who not only take 75mg Ibrance but who take it on a shortened schedule and they're doing well. Also there's a trial at MD Anderson using 25mg!
Have a wonderful week-end, everyone!
Love from PatGMc
Here's an Ann Lamott lot with some of the best ones available on eBay now and you can make your best offer:
https://www.ebay.com/itm/Anne-Lamott-Books-Traveli...:g:35gAAOSwVt5dE8AL
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Jaycee, Candy, Pat — thank you!
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Gumdoctor, that is a powerful metaphor indeed. You’ve really got me thinking — in a *good* way! Thank you 🖖
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A Facebook friend posted this on Facebook. Article from June 2018, so not real new. Thoughts.....
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Penny - so nice to see you but so sorry you had that brief scare. Thank goodness for hubbies who get it. Good luck with 75!
Love to all,
Lauren
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Candy, Isn't this wonderful? I'm thinking this is probably Judy Perkins and you can friend her on Facebook. Not only has her cancer been gone for what is now probably 3 or 4 years but she recently kayaked from Florida to Canada! A true Warrior Woman!
Immunotherapy has been a bit slower to be perfected for MBC but I have great confidence that we'll see more and more people treated and cured with it.
I have to remember that few had faith in the science of Ibrance for many years and look what happened!
Pray for those hard-working researchers!
Love from PatGMc
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Penny - 75mg for me after 125 and 100 were just too much and also on a3 week on 2 off cycle - 3 and 1 were just too much... I’m NED and got there on that dosage. Other patients in my clinic are doing well on 75 too.
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Gumdoctor...WHOOO HOOO we are gonna KILL SOME CANCER CELLS TODAY!!!! I totally have to try that one!!! you made me and my husband just smile so big. Thank you.
Pat....I love what you said about what your MO said about all the new treatments...it gives me HOPE!!!!
Penny...where in NY do you live or should I say do you get treated in NYC I do, at Columbia...I PM'd you last week but didn't get a reply maybe you didn't see it?
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I just returned from my second Mongolian trip. There are some great shops in UB but nearly all the Kazakh people live in the far west of Mongolia, west of Olgii principally in Bayan-Olgii province. Do not wait to be "cured", grab your meds an go! There is no greater joy or satisfaction than hanging out with the local people.
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Lauren and Karen, thanks to you two too! :-)
Nicole (and any others who have PMed me and don't hear back for a long time!) apologies! I somehow never seem to notice thenotification that I have a PM and sometimes when I check I don't see anything there initially. It's probably me and *not* the system ... but whatever it is please do know I don't mean to be unresponsive or unkind.
And also along those lines, I'll apologize again that I keep popping in and then disappearing for a while. The latest chapter to overwhelm me is my teenage daughter's own health issues. My DH and I have been pretty overwhelmed -- even more than usual!
Maybe the answer lies in Mongolia ... we should take her for a cure! ;-)
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Good morning all
Topdubu once I accepted this MBCfor what it is I try to travel and take meds and SE's with me. It takes some planning but it checks the box something to look forward to, otherwise scans, medication, blood work, shots repeat.
Tanya
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All this talk about travel has prompted me to ask a few questions. As background, my wife started letrozole on June 7 and on Ibrance (125 mg) on June 22: so far, so good relative to SEs other than a drop in white blood count from about 5.7 to 2.8 (as expected). My questions:
- Her oncologist seems cautiously optimistic that she hasn't seen many SEs yet. I get the impression that more are likely to come the longer she's on this combo. Although I recognize that everyone is different, how long did it take others to have some of the more difficult SEs associated with letrozole/Ibrance?
- Although there's lots of travel, my wife and I would like to do with the time we have remaining, she's very concerned (rightfully so) about picking something up on an airplane or while out and about (particularly in a foreign country). What precautions did some of you ladies take when you traveled to prevent illness while your white blood cells were down?
- She's finishing up her first doses of Ibrance this week and then will have a week off next week, somewhere in her third cycle, we expect another scan. How many cycles did it take for some of you to see reductions in tumor size? My wife is hopeful that she'll see immediate reductions, but I'm fearful that she's setting herself up for disappointment (after only 3 cycles or so).
Thanks in advance for any info.
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BLMike, first of all, I'm impressed that you are advocating so well for your wife. Well done! Now for my answers...
1. The SEs are different for everyone. They may remain slight, or come later then go away again. I had nausea at first, but do pretty well now (after 3 years). My diarrhea comes and goes but has never been severe enough to interfere with travel or errands. My hair thinned but is coming back thicker now. I am tired all the time, but do better when i get up and move although only for short periods of time. For example, I cook dinner but have to sit awhile before I can clean the kitchen after we eat. I can grocery shop and put things away once i am home, but then sit for awhile afterwards. I can walk for about 30 minutes before I need to sit down. I can handle airplane flights but I get a wheelchair because I don't do well standing in long lines or walking up long ramps (especially when I fly to Colorado as the altitude bothers me). I would rather reach my destination with some energy left in me so I can enjoy life. I had to swallow my pride to do this at first, but everyone treats me nice and the airlines have made this easy to do so it is worth it.
2. I still travel fine. I wear compression socks on a plane or a long car ride. Sanitize the tray table on an airplane (keep wipes in my purse) and anywhere else you may fear, but it is minimal. I keep a mask in my purse in case someone is coughing near me, but I don't think I have worn one in months and I do fine. My onc and I both agree that I am not as immune depressed as we feared in the beginning. My granddaughter lives with us and I occasionally catch whatever virus she brings home from preschool, but I am strong enough to get better without any additional help. Oh, I don't shake hands as freely as I once did...but if I do, I use sanitizer as soon as possible after.
3. Some people see some results the first 3 months but usually it takes 6 months for anything significant. You will find this varies also so tell your wife to hang in there and try to have some patience.
Mostly I go with how I feel. Some days are just fine while others I spend more time in the recliner.
Hope this helps.
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Mike, I’m on cycle 6 of I/L and although I feel good generally, I have had a few side effects show up gradually. I’m noticing more brain fog (can’t think of names, etc), skin and other dryness, and weight gain. Not devastating but new.
My first scans were after cycle 4 and showed great improvement in my breast tumor (gone) and axillary nodes, some improvement in liver lesions and no change (stable) on my lung nodule. My MO said that was all good
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