Ibrance (Palbociclib)
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Great idea, Sandilee, hope it helps. Sometimes I check in with the exercise thread to get some inspiration - these amazing people are running marathons, riding horses etc.. although I once ran marathons and did just about every sport, I can't do much but walk now, and I sometimes read that thred to get inspiration to get my butt moving!
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Going to a seminar/update at the City of Hope this afternoon. Given by by three oncologists (one being mine) on ASCO and the latest (and hopefully bestest) BC treatments. Excited to hear great things. I'm sure there will be LOTS of Ibrance info. Let me know if you have any questions I may be able to ask, or info I can listen for and takes notes on.
Stefanie
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Hi Holly, I think the video Myra is referring to is the Holley Kitchen video posted on FB. Very powerful message. There is a thread here that has it posted and discussion. https://community.breastcancer.org/forum/8/topic/8...
You were right the drug the woman is on is referred to is the LEE drug. I noticed it on the drug description after you mentioned it. Very possible she was put on it before Ibrance approval as you said. Just made me wonder if it could be added to the arsenal.
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Thanks Stephanie,
One thing I've been wondering is, do they let patients stay on this combination if their white blood counts, specifically their neutrophils, continue to dip way down every month? At what point (how many weeks of time off) is the drug no longer viable?
I may have to take three weeks off every month in order for my counts to go above the 1100 my onc wants them to be. Will the drug still be effective on this type of reduced schedule?
Whatever you can gleen about this topic from the talks would be appreciated. :-)
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Sandilee, I will try my best to get some answers/opinions on this.
Stefanie
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Well, that talk at my hospital was NOT what I thought it would be. No talk of ASCO or Ibrance. It was about City of Hope's research and the future of breast cancer treatment. Two brilliant research doctors joined my Onc to discuss immunotherapy and gene therapy, which included manufacturing super bot viruses trained to go after cancer. Apparently trials coming soon, within a year or two.
Very interesting stuff, but not topical to this thread.
I am seeing my Onc next week so I will try to get his opinion for you, sandilee.
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Regarding Ibrance, my understanding is that you are titrated from 125 mg. to 100 mg and then 75 mg. If the lowest dose still wipes out the white count then the drug will no longer be prescribed. I have recently finished a 25 day break and was given 100 mg a day with Femara. The weirdest part is that I seem to have digestive issues with the 100 mg where I did not with the 125 mg. Maybe there is an explanation or it may be an overactive imagination..Sure hope it works because it took my tumor markers to 6. Carolyn from Music City
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Stefajoy, do you know if they recorded the COH presentation today so that we can access it? Can you tell me the names of the presenters?
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Car2tenn, it seems like I have mild digestive symptoms the first couple days of each cycle. I think the first couple days of the cycle require a careful diet for me. (Now on cycle 3 and changed to 100 mg.)
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A very timely conversation going on here. I was lowered to 100 mg on this cycle and it is the weirdest I have ever felt on this drug. I work outside all day pretty hard so I can't blame it on exercise or outdoor activity. I am way more anxious, spacey, major non sleeping issues. I am watching water, protein, good food. My question to my trial nurse will be about fillers. If the dose is lowered do they add fillers? Always super sensitive to that stuff. I always had two good weeks and one bad. Not this month
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Stefajoy, really interested in hearing more about the trials. I'm in Southern California and Immunotherapy trials are extremely interesting to me. Please share as you get more information.
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I find the immunotherapy trials a very interesting topic, too. This seems to be the future of cancer therapy- something that may actually provide a cure. At least for some cancers, for some patients. I'm interested in whatever you can share about it, Stefajoy.
Lenn- I hadn't thought much about fillers to the Ibrance. I feel better on the 100s, except for the anxiety that I really can't definitively blame on the medication. Instead of tired, I'm a bit wired- but who knows.
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my doctor is Dr James Waisman ( a god to those who know him). He is at COH, collaborating with dr Peter Lee and dr Yuman Fong.
You can look up their research on line. It's pretty amazing stuff, but the mazes and the hoops to get approved for trials takes time. They are close. Maybe 18 months from human trials. These men feel that a between immunotherapy (dr.lee) and I don't know what they call it but it's basically injecting microviruses that attack and kill cancer cells (dr fung) as the way breast cancer and other cancers will eventually (sooner than later) be cured. It's already happening, just not in humans. But the methods are safe, just working on approval. It's a process.
They are not after temporary fixes, although we do all need our temp fixes right now, but they truly believe the cure for metastatic disease is close at hand. They are not hesitant to use the Cure word. I'm not good at regurgitating the science, but I was impressed by these doctors and I'm feeling really hopeful for the future. I hope we all make it there.
It was recorded but I don't know for what. I will ask Dr W when I see him next week.
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Stefajoy,
Thank you. I looked up your doc and found out he is also on staff with my onc, Dr. Chan, at Little Company in Torrance. :-) I know who I'll go to if I need a second opinion! My onc is also excited about the immunotherapy potential- we just have to hang in there long enough to have access once approved. Would you do a trial if the possibility were to come up?
You are on Ibrance now, I see. Are you also taking Femara? I also see Faslodex in your profile and am wondering if Faslodex failed you eventually, like me, or are you still taking it with the Ibrance?
Thanks for reporting the information back. Information is hope.
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I would do a trial. That's my hope for all of us--hang on long enough for immune therapy etc. and a cure.
If I had been at the COH presentation, I would have asked
1. Are the upcoming trials going to include stage IV people?
2. Will the upcoming trials be for any particular subtype(s) of bc, or for all? I have ILC.
3. Is there any treatment that would exclude me from the trial, so I can avoid it if possible?
Thanks for reporting, Stefajoy.
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Sandilee - I failed on Faslodex with exemestane after 3 years. I am now on Ibrance and Letrozole (femara), but i wonder if my doc will change me back to faslodex once its approved to pair with Ibrance. I see him next week and will ask. As of yet, my appeal is still pending with Blue Shield and the Ibrance hasn't been covered at all. Maybe with the Faslodex they will cover it ,since it will be approved as a second and third line treatment.
Shetland - It was a big room and, in the end, only a few questions were able to be asked. I do believe the trials will be for metastatic disease, as that is what they are trying to cure. What makes one qualified (or disqualified) is yet to be seen, but ultimately it shouldn't matter where your cancer is, if it can be hunted and killed by these little nanobots (virus). Something else super interesting for the young women yet to be diagnosed, the goal is no more invasive surgery, no more mastectomies and no more lumpectomies. A small tumor found in the breast will be able to be completely annihilated with an injection (of virus) directly into the tumor, and viola...no more breast cancer. The future is bright.
I would like to think, with all of the great new treatments currently emerging, that we will all make it 3 - 5 more years, and then maybe we will finally be able to be cured.
Hope is a powerful thing.
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Wow, Stefajoy! It is wonderful to imagine a cure in time for us. You post gives me new hope.
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Wow Stefajoy. Would be great to imagine a cure for all of us in less than 5 years. Would love to see it for some of the young women that are in their twenties and thirties. So heartbreaking and even worse that we all get denied treatments, due to insurance, that may help us. Let's just hope that Ibrance and also some of the new and promising treatments on the horizon help us until the "cure".
Got the results on my Tumor Markers done last week. I am now at about the same as when I started at the end of February, which was good after being on Halaven for a year plus. I'll take stable results. Interesting that they went up after about a month on Imbrance and have now come down again.
Will keep hoping and praying.
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Stable is good! Hormone treatments don't work as quickly, so it sounds like you may be on the right path. That also gives me a little hope that the increases in my tumor markers will reverse. I will know soon. I had my blood drawn yesterday, appointment tomorrow.
I think we all need a little something to hope for. Kinda like it's nice to fantasize what you'd do if you won the lotto. Important to remember, though, you gotta play to win! Buy me an immunotherapy ticket, please!
My 11 yr old has his 5th grade promotion this afternoon. On to middle school after this. He was 6 when I was first diagnosed and it was hard on him to see his mom so sick from all the treatment. He has adapted well over the last couple of years, but I know he has fears. I've been feeling a little sad and weepy the last couple of days. I hope I can kick it to the curb and enjoy this afternoon without crying!
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Romansma, the life events are especially emotional when you have BC. My daughter was in 5th grade when I was diagnosed. I didn't know if I would make it to her bat mitzvah, but I did. It was emotional, but actually it was mostly joyful and fun. This week she is graduating from middle school and my son is graduating from high school and yes, I think there is an extra level of emotion for us because we don't know if we'll make the next great life event. At the same time, we are sooo grateful that we get to see this particular milestone. We know grateful more than the average healthy person. My next goal is her high school and his college graduation in four years (funny how the end goal keeps moving). Try to relish in the joy of the moment and not let the sad take that away from you.
Stefanie
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Romansma I hope you will enjoy this afternoon to the fullest and only cry tears of joy. Stefajoy is right, we do know grateful more than the average person. I received a "save the date" last week for my friend's daughter's wedding in 2016. I started to cry because I was wondering if I was going to be here to celebrate. But then I kept reminding myself how many year's I've thought this way and how many joys I've been here to celebrate. And yes, the end goals always keeps moving.
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Beautifully said Dorothy and Stephanie. Enjoy your day Hope with your family. Cry, laugh and do it with gusto! My family expects it, even prior to MBC. Myra.
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Yes, you are all right! I don't take any of it for granted and I'm so grateful to be here right now. I think it's a heightened sense of emotions....all of them. I was explaining to my psychologist that everything feels so much more intense these days. I get my feelings hurt sooooo easy, and days like today feel like a bundle of emotions hanging out for everyone to see. Maybe it is the drug combo!
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Hope I also think a lot of it has to do with us facing our situation. Many times days will go by and I don't focus on what is going on with my body, especially since I feel very well. Then something will trigger the emotions. Last week I went to a close friend's daughter's high school graduation. I kept focusing on whether I'd be here to celebrate her college graduation.
Enjoy the day. Know that there will be many, many more.
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I did good.....until the principal presented them as the 5th grade class of 2015 and the high school graduating class of 2022. Then I lost it. Let's get those trials going now! I want to be there for.his high school graduation in 7 years! And beyond!
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what a gorgeous picture and handsome son 🎓🎓🎓 Myra.
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Congratulations! What an apple-cheeked doll he is! You make quite a good-looking duo!
Tina
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Wow RomansMa! You make beautiful babies! Congratulations to you both. Here's to the class of 2022 and some great trials to get us there!
*susan*
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Dorothy and I having a wonderful brunch in NYC. It was so wonderful to meet a new friend and be able to chat so freely. What a great time we had! Myra 0 -
Congratulations Hope. Your son is so handsome and his mom looks so beautiful! Let's all toast to successful trials and being here to celebrate the class of 2022.
Dorothy
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