Ibrance (Palbociclib)
Comments
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Rubyla and others, I just wanted to jump in to "defend" the moderator post. I don't think they were chastising you for posting here at all - in fact, she explicitly wrote something like "you may want to post there too" when listing the other sites. Obviously, like husband and Mike, you're posting on behalf of your mother-in-law; they were just also giving the other sites that might be helpful to you.
Just my two cents' worth, LOL
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Ciaci, I PM'd the mods about their post. I got a reply. They were clear that they did mean that only MBC patients could post to stage IV only threads. They also said they PM'd Rubyla. I was glad to see Rubyla came back here after that. If she wants to be here, I want her to be here. Same with husband and Mike.
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Question for group--- Many here have posted Onc-Live articles for educational use. I have been receiving emails from Onc-Live about webinars. Are these free?? Have any of you participated in the webinars? I have read articles but that is all.
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Imagine - I am sorry about the delay in petscan. I had my first petscan after 3.5 months of treatment (March 10) before Covid really started shutting things down. Hope you can get one soon for your peace of mind.
Mis1 and Snooky, I think you both had petscans recently and are hoping you have good or stable results!
Husband11, great news about your wife! I am happy to hear she is feeling better.
Rubyla, welcome to the Ibrance thread and thank you for helping your mother in law through this. Like others have posted, I have read to be careful to wash hands after touching the capsules but have not had the instructions to use a separate toilet etc like when I can chemo infusion back in 2009 or radiation. I think it's fairly safe but then again, I don't have small kids in the house (they are grown!).
Sondra - I have changed my time taking Ibrance to breakfast, dinner and dinner time or just before seems to work best for me. I get an injection of fulvestrant so aren't taking the A/I but agree the A/I is less time sensitive. When I first started I felt like taking the Ibrance at dinner was somehow giving me insomnia and asked if I could switch the time I took it and my doctor told me it's important to take it at the same time every day so wait until I started a new cycle to switch the time.
I just started cycle 5. They reduced my dose to 100 mg as I have had to delay starting 2 out of 4 times due to low WBC. I received them as capsules again, not tablets. They do come in an plastic ziplock labeled as "Chemo meds" .
Washington State is almost at a month of Covid shutdown. My husband and I watched the movie Contagion last night (from 2011). Really interesting considering what we are dealing with!
Hope everyone has a good weekend:)
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AprilGirl- if you don’t mind, what was your WBC? I am in the middle of cycle 3. My numbers are getting lower each cycle.
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DodgersGirl,
I should have specified it was really my Neutrophil count she didn't like. My Neutrophils would drop below 1.0. They were .85 at the end of my week off and she wants them over 1.0 (or higher). When my neutrophils were .85 my WBC was 2.92 which was also too low for her liking. After 2 weeks off my neutrophils were 1.7 and WBC was 3.57.
We will see what happens on 100mg!
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RubyLA, wanted to add my welcome and highly encourage you to get your mother to drink as much water as possible while on this drug. It will help her enormously. She also may want to nap in the afternoons as her body adjusts. I hope she finds that she’s able to have a fairly normal life once she’s in the groove of it. I’ve been in this since 2016 and have had side effects every now and then. I found that my mouth sores were worse when I had more citrus than typical for me. My skin really dried out (but I think that might be the AI). A little hair thinning but that could be aging and Lupron that depletes my estrogen. And I do get the explosive diarrhea every now and then, which is a total bummer but I’m glad it’s more the exception than the norm
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jaycee49, wow, I'm truly surprised that they wouldn't want her posting here for her mother-in-law! I could understand if she were asking caregiver-type questions, but she's asking for patient-centered advice, on her behalf. I hope she sticks around, too!
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Jen,
I realize the need to always drink a lot of water but am wondering how specifically, it helped you with the Ibrance side effects? TIA
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AprilGirl1– thanks for your reply
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I can understand the Mods perspective... this thread is for us and is one of the main reasons I am here. BUT Mike and Husband are us too. If others are coming here for the pure benefit of their people who can’t bring themselves to participate and we,the body of the Kirk agree to that, then we should should allow entry.
Anyone who appears to be voyeuristic should be bombed though! Just saying....
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My largest liver met has shrunk and I’m only 2 months into the trial........this calls for a celebration
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Mls1, I am celebrating with you! Woohoo!
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WooHoo Mis1!
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Mis1- Woohoo !!! Always a celebration when we hear good news.
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That's terrific, Mis1! We're dancing with you in celebration! I'll be praying for all of them to be gone in 6 months!
Love from PatGMcTwirling
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That's great news Mis1! Congrats on your treatment working so well for you.
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It's such a great feeling. Just before Christmas when it was confirmed that my cancer was back I felt like I had been kicked in the head. That all that was left for me to do was to crawl in a hole and die. To know that there are drugs that lets you live a normal life while shrinking tumours is a wonderful thing even if it's only for a little while
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Mis1, because you're responding so well there's every reason to believe that will continue. People who were on the trials for Ibrance are still responding. You'll see them pop on here from time to time.
Let's all remember that many clinical trials continue, some that are geared toward making the body respond to Ibrance longer and several that will work in different ways. Immunotherapy is still on the horizon for us as well.
Love from PatGMc
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Welcome Rubyla! Sorry you that you had to come here yet thankful that you joined this amazing group of positive and uplifting people!
Praying for all those who are awaiting scans! Pray things get back on track for everyone.
Mis1, How encouraging to hear that you’re doing so well! Amazing !
Aprilgirl1 , seeing your numbers rising again is also encouraging!
Candy-678. I haven’t heard about the webinars but I’ll be watching to see if anyone answers for you.....hopefully my reposting will keep your thread going.
Take care everyone. Hope we get our get out of jail pass soon:) Seriously thinking, I’ve enjoyed reading again!
God bless !!0 -
It doesn't taste very good, but putting some coconut oil in your mouth and swishing it around for 10-20 minutes might help the mouth sores go away. My friend who had a lot of chemo taught me this. Whenever I feel a mouth sore coming on, I start swishing.
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GinnyO2- Thanks for bumping my question. Since I am stuck at home (as we all are) I thought educational cancer or COVID webinars would be interesting. So bump:
Anyone know of free webinars about MBC or COVID in the face of cancer discussions??? And does anyone know if OncLive webinars are free??? I tried to look up customer service number on OncLive website so I could ask them, but have not found a number to call.
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Has anybody heard any interesting news recently on upcoming treatments or trials that sound promising for MBC?Leronlimab was in the news quite a bit before but most articles on it now are dealing with its potential as a treatment for coronavirus.
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Regarding Leronlimab, I think theres a phase 2 trial for its use on 22 different solid tumors. Has anyone spoken to their doctors about it?
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elenas401,
looks like it's in trials for triple negative breast cancer only? I just did a quick search so might have missed more. That would exclude us hormone positive gals.
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candy, the website Metavivor has a page of COVID19 resources and webinars you might want to check out:
https://www.metavivor.org/support/covid-19-novel-coronavirus-resources/
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You're right BevJen, the one study for Leronlimab was for triple negative, but in the Phase 2 basket trial for 22 different solid tumors, Cytodyn said Leronlimab was being give to a breast cancer patient who was not triple negative. The CEO said his mother in law has improved with HER2+ MBC with brain Mets after being given Leronlimab. If it's being tested for 22 different Timor types, maybe the type of breast cancer won't matter. It has to do with CCR5 according to some articles. I'm surprised we don't hear more about it when you look at how limited some current breast cancer drugs are that have been approved.
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I just looked up the Cytodyn site and read a few things there. You're right -- that sounds like some kind of a drug. Being tested for coronavirus; also for HIV/AIDS; also for trip neg MBC; also for other solid tumors. Wow. Have not heard about the drug at all, but it sounds like we soon will be! This sounds like the miracle drug of all miracle drugs.
Let us know if you hear more. If Cure-ious is reading, have you heard about this one at all?
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Candy, someone may have mentioned Sharecancersupport.org, but in case they haven’t, here it is.
https://www.sharecancersupport.org/metastatic-breast-cancer/vdometastatic-breast-cancer/0 -
So much to be excited about concerning the Cytodyn drug but what may help it get to market faster is the fact that it worked on the MBC brain mets of Patient #2. If that holds up over a large number of patients without adverse events it will indeed be a game-changer. Woohoo!!
Love from PatGMc
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