Ibrance (Palbociclib)
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Dr, it's neupogen and I used to get those. Neulasta never worked for me. I always got mine in the arm. I don't know about Claritan as I can't take antihistamines. I do know that it makes your joints ache. I ended up having to get mine in 2 doses, otherwise the pain was unbearable. Good luck with yours! Hopefully, Claritan will help.
Hugs and prayers
Claudia
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PatG, it would be great to have lunch, my taste buds are getting better too. I don't think we realized how bad we felt on the Ibrance, it just became the new normal. But, it is keeping cancer controlled and that's what we want. I'm thinking my MO will have me use letrozole for awhile and just wait to see if cancer stays stable and then start back on Ibrance when or if things change. Of course, in my dreams I just continue with letrozole for a long, long time.
I'm actually going to see a foot doctor on Monday and I'm hoping he can give me a cortisone shot for the heel. I've seen a PT in the past but I've put this off too long and I don't think I have time to get much therapy before our trip. I've been stretching and icing and some days things are better and other days, not so much. As you say, it is what it is. I understand the hair thing, it was hard when I lost it 25 years ago but now I think maybe a wig would be an easy option. Of course, I say that but reality is always different and it may be just as hard if it happens again.
It is an adventure and God is Good!
Dianarose, praying the transfusion works wonders for you. That long car ride sounds awful. I feel so lucky to be close to my hospital and cancer center. I guess, we do what have to do.
Hugs and prayers,
Faith ( in the future).
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following. reading the research. thanks everyone.
hugs
>Z<
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Cancer center just called and said my total something or other was only.08 so unless it comes up I get the shot and no chemo tomorrow . So afraid the cancer will get ahead again and my cells will start committing suicide again . So not ready to die yet. Terrified today!
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Dianarose, my first post here as diagnosed only this week with metastasized breast cancer, inoperable and will soon be on Ibrance. I had neupogen injections first round of BC 5 years ago and because the are subcutaneous they are not too hard to do. I had a friend do most but did my own often. It can be in belly too which I found the easiest.
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Marian- not worried about the shot but worried about not getting the chemo . This dam belly cancer tends to get ahead then I'm in big trouble . Off again to the cancer center this morning . This is the fourth day in a row and they want me to come in over the weekend. So dam tired.
I hope Ibrance works wonders for you
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Dianarose - my thoughts and prayers are with you today.
Claudia
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Good morning..
For some reason, I have missed many days of posts. I was having trouble logging in several days ago and when the website finally came back to life, I guess I was supposed to "log in" again, but didn't. Oh well...here I am.
Dianarose....so sorry to hear all that you've been going through. Keeping you in my thoughts and prayers.
I had labs done yesterday that my nephrologist wanted done. I have been chugging water all week - on my own, instead of going to the oncology facility for fluids every day. He took me off my remaining BP med, thinking that perhaps the creatine level was associated with the meds. I guess I will get my results in a few days. I think there were six different components to the lab tests.
On a good note, I'm finally tolerating the letrozole/Ibrance 125 mg. without any bad side effects. I will be ready to start my 3rd round the first week in September. I haven't been able to get the Zometa infusion due to the increase in my creatinine level, but hoping the lab results will show it back to normal.
I need to go back and read all the posts I've missed. But, wishing everyone a very good day!!
Hope
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In my PET scan report, along with all the good news about my mets, the radiologist also wrote about incidental finding. I was surprised by that, I've never seen it before in PET report. He noted atherosclerosis in coronary artery and calcification in aortic valve. So, my PCP has ordered a Lexiscan (stress test) and an echocardiogram. I'll have those done in the next two weeks.
Has anyone here had anything like this show up on scan reports? I'm also wondering if Ibrance has a side effect of any blood vessel damage? I've also had increasing SOB especially with stairs in the past month or so. It's complicated. I've had some SOB from my lung mets, more at DX. But, I know now that my lung mets are smaller. but, the SOB has gotten worse. It's confusing.
I'm almost 70, I have Type 'll Diabetes, I've been on statins for many years and BP meds. and I'm not skinny!!! I have family history of heart disease. Put all that together and I'm at higher risk for heart disease. So, it's probably time for a stress test and an echocardiogram even if irregularities had not shown up on the PET.
It does get complicated and confusing when trying to decide which SE is from what. I know that's a common concern for all of us here.
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Circuling back to the discussion we had on this thread awhile ago with Jensgotthis and Z, I finally had time to read the recent paper in Nature about Ibrance and related drugs:
https://www.nature.com/nature/journal/v548/n7668/full/nature23465.html
The data show clearly that Ibrance and related drugs stimulate anti-tumor immune cell activity, and the prediction is that we would all be doing even better if the Ibrance were combined with checkpoint inhibitors, such as Keytruda, Opodivo and the like.
So how long before clinical trial data come out to confirm these predictions? And what can we do in the meantime- well, make sure to take a high quality probiotic to stimulate general immune system function, try to get lots of good sleep.But, yeah, this means there are a lot of metastatic breast cancer patients who might be benefitting from immunotherapy right now!
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Thank u Cure-ious
Any suggestions on the high quality probiotics
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Grannax2- atherosclerosis of the aorta suddenly showed up on my problem list (mine is long enough already, thank you) and when I questioned my MO she said it was an incidental finding on PET due to aging, but, since it was seen they had to add it to my problem list. I don't have diabetes however, so I am not having further work up at this point.
Cure-ious- thank you a very interesting article.
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Had chemo today even though my neutrophils were .09 because my platelets dropped since yesterday . Will go tomorrow and Sunday for the shots to try to boost those white cells. To add salt to my wound my hair started falling out again today. So pissed! Just got it back. Third time of being bald totally sucks
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Some of you may have seen in the liver mets thread, but recent CT scan shows progression in the spots in my liver!
They cant see cancer anywhere else, so thats a small bit of good news. So that means I'm off Ibrance/Arimidex and will be starting Xeloda next week. Its a bummer, because I was hopeful following my prev scan which showed shrinkage. Oh well - it not for me butl dont dispair - Ibrance has shown to be a verysuccessful treatmentc and I will be rooting for you all! 😍0 -
Scwilly -I read on the other thread that you are on to Xeloda. Often works well for people who progress on Ibrance. Seems to catch what Ibrance misses. Expecting good news on your next scan. Stop by and let us know. Many here would like to learn about life after Ibrance.
Cure-ious -
I am preparing for private immunotherapy treatment outside the country (NKC therapy). The clinic requires patients to be on some kind of standard of care treatment during the NKC therapy. They have found that pretty much any treatment makes the cancer more visible to the immune system, as long as it is causing cancer cells to die at a higher rate. The concern is that Ibrance is immuno suppressive in the sense that is driving my neutrophils (among other things) down to 1-1.6. It's become a complicated discussion, that I can barely comprehend, whether the type of immunosuppression I see from Ibrance will effect the immunotherapy negatively. As you well know, the immune system has a lot of moving parts. I am still not sure whether I will take Ibrance during the two weeks of therapy or not.
City of Hope has combined ibrance and keytruda in a trial but none of the people I know who go to City of Hope have been referred to the trial by their doctor. I am pretty sure that particular trial not going well.
>Z<
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Hello, Ibrance sisters, You might recall that I took an extra 2 weeks off Ibrance in order to do a speech for Komen's Survivor Luncheon this week-end. I'm their Honorary Survivor Chair and I wanted to be in tiptop shape for the event. I've been feeling really good so I headed out to Ann Taylor's sale yesterday to treat myself to a new dress. Guess what?! I got sick as a dog and ended up in their employee restroom throwing up my innards! Please pray that I make it through tomorrow without being sick.
That bummer aside, I want to share with you the newspaper review for the LRoss Gallery art show this month. I'm so tickled about it because I almost didn't get any pieces ready due to my Ibrance fatigue. It felt like a real victory and a way to thumb my nose at cancer. So I'm thinking this isn't the first time someone has used "unhinged" and Pat McRee in the same sentence but it's the first time it's been a compliment!
http://www.commercialappeal.com/story/entertainmen...
In case you don't want to read the whole thing, here's the paragraph about my work:
"The foremost of these is Pat McRee, whose irresistible goofy-bizarro mixed media pieces I don't recall seeing anywhere but in this annual show. Like some unholy blend of Hieronymous Bosch, Salvador Dali and Rube Goldberg, McRee's collaged and painted works offer an unhinged yet precisely calibrated view into the darkly hilarious milieu of Elvis worship. Here are the titles: "Industri-EL … Unplugged (You can call him an Impersonator, you can call him a Tribute Artist; just call him!)" and "EP and the Liberty Sisters at Horn Lake … Something to See." What can I add to that?"
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Dianarose...You just can't get a break!! What a way to spend your weekend. I have just noticed my hair is thinning a bit on the Ibrance. It's thin, as is...so, I'm not too happy. When I first started the Ibrance, I was told it "might" thin out a bit, but not necessarily.
Scwilly... I wish you well on your new meds.
Z....Good luck on your journey.
Pat...Enjoyed the article! I was hoping to see some of your work. Sure hope you feel better for the luncheon.
Hope
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Pat, pictures please.
>Z<
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Scwilly, I wish you the best on your new meds. Please keep coming here to let us know how you're doing.
Thanks, nonahope!
Z, thanks for asking. this is the link to the Elvis show:
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Pat, you just made my day with your art! I was thinking of waiting until later when I saw link but decided to have quick look. Wow! And this on these drugs? Am hoping that my tumour will be shrink by a few radiation blasts so the nerve damage that led to my diagnosis may retreat so I can get back to my passion which is quilting.
This second go at breast cancer started with some lymphedema in May on my first flight en route to Nepal to lead my swan song trek. I was wearIng my compression sleeve as usual and flight was not as long as ones to and from NZ in March. So on return I was seeing the usual six month round of doctors, RMT, Physio and also my PS. Tingling, burning, numbness down right arm to hand started and by mid July hand strength was going. MRI was ordered but took until end of July, my mistake is getting BC in the summer. That led quickly to chest CT then core biopsy last Thursday. Wednesday I talked to the MO and here I am with inoperable metatastic BC and soon to start Ibrance and Faslodex~~in fact Ibrance tomorrow and the other next week as logistics once approved for it today made it too late for this weekend. I will have a few radiation blasts to hopefully shrink the tumour enough to halt nerve damage problems. Meanwhile I am on Oxyneo and it does help.
❤️Maria
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whoops, Marian not Maria
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Hi Z! I will go research the NKZ therapy! I did go to City of Hope a year or so ago to ask about that trial- it was adding Keytruda to Femara-Ibrance, after Jensgotthis said her MO from UCLA had recommended it to her. I was not eligible for the trial, because it required a measurable disease, so they could follow with scans if it was working- so bone only mets were not eligible. The thing about immunotherapy is that it pretty much always requires to be done in concert with some other kind of therapy, supposedly to kill more cancer cells and boost the presentation of your cancer antigens to your immune system, but also it really works best if given early and given a long time to work. So, I worry about waiting too long to get immunotherapy, and having cancer cell count too high, with not enough time for the immune system to take it down.So, if City of Hope is only taking really advanced disease, maybe that is why its asking too much of the drug to show a benefit- it'd be nice if someone tried it as first-line therapy. But, I'm happy with the idea that maybe don't have it right up front but later as part of an abemaciclib treatment, although again it would have to be after you got control of really active cancer spread. It's just what if we find that adding it firstline in some combination could give you an average of ten years instead of two?! You know what I mean? I feel like I'm just sitting around, waiting to progress wish they would hurry up with some new approach.
It has also been reported that some people do get resistance to immunotherapy, so maybe it can't be given over and over, so in that sense, it might be an advantage to wait a bit longer till more information comes out about the best sequence and strategy. Am trying to be optomistic that these stories are going to push the field to do more combination testing on MBC.
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Marian, you are the focus of my prayers tonight. I want you to quilt again and I believe you will! Please post some photographs of your work.
My friend, Stephanie had radiation to tumors in her neck that were affecting the use of her hand. The rads worked perfectly and she followed them with treatment (Herceptin as she was HER2 positive) and her cancer was resolved. She was concerned about nerve damage but has none. This can absolutely happen for you with Ibrance!
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Cure-ious, since Keytruda is on the market, I wonder if our oncologists can't add it to our Ibrance/AI regimen should they think it makes sense for us. It seems the problem would be in getting insurance to cover the protocol. But if the onc could get the drugs donated......hmmmmm. Just me crazily thinking!
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Pat, did your friend get the use back of her hand! I will try to remember how to add a photo. I did mange to finish a baby quilt a couple of weeks ago but it was just a bit of hand quilting and the binding left. It took me hours but is now with baby Naomi
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Grannax2, I'm not sure about Ibrance damaging blood vessels but it definitely causes SOB especially with mets to the lung which I also have. I have cardiomyopathy from Chemo 25 years ago and my HR function is at about 40-45. I had an echo this week and my HR function is stable since the last one a year ago. I get very short of breath climbing stairs especially if I carry anything. I'm trying to do some cardio and it seems to help the SOB. However, I'm on a break from Ibrance right now and that really helps. I'm even older than you, have no diabetes or weight problem but still have SOB.
Diana, you are in my daily prayers, can't believe all you are going through.
PatG, loved seeing your work in the Elvis show. What a great review. I'm so sorry about your vomiting issue yesterday, sending prayers for your speech tomorrow.
Marian, welcome to the Ibrance thread but so sorry you find yourself here. However it's a great place with lots of smart ladies who will help you navigate this awful stew we find ourselves in.
Z, you are one brave gal and master researcher. I know you'll find the right thing for yourself and I'll be praying it's the best option out there. Please keep us posted. Anxiously waiting for more news.
To everyone, hugs and lots of prayers,
Faith
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Marian, her hand works just fine! Yours will too. How about seeing a physical therapist. I've found that they can work wonders.
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Pat - the elvis show is really cool. I enjoyed it very much. Thank you for the link.
I do think your reasoning on the Keytruda is reasonable. Certainly worth a try.
Cure-ious - Everything I read suggests that immunotherapy is safer and will work better when I am stronger, my immune system is less compromised, there is less to kill. The argument for waiting is that the cancer is more differentiated and therefore more visible to the immune system ... but the folks I am working with don't seem to believe that. I also think there are so many different kinds of immunotherapy ... the kind that I am pursuing is barely discussed in the US ... that while I might become resistant to one kind, there will be other approaches. But, again, the folks I am working with perform the procedure on patience multiple time, as needed, to maintain the response over time.
Very interested in your thoughts on NKC Therapy. Will send you research papers by PM.
>Z<
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Thanks, Z! I will have fun researching other types of immunotherapy!!!
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC46873...
Patg, My MO says she'd love to give me Keytruda but can't unless it is an FDA-approved combination of some kind. The results in Nature are also preclinical (mouse) studies, so we have to wait for them to be replicated in a clinical trial.
City of Hope's trial I did apply for about a year ago, because it was recommended by Jensgotthis great UCLA MO, but it was not for bone mets only patients so I was not eligible- you had to have measurable mets on liver or lung, because the only way they could tell if you were a 'responder' was by scans. So basically you had to be taking Ibrance/Femara for at least a year already, and had to have some mets that were still active, and then they would see if adding Keytruda made the treatment work better on those residual mets. By that definition, the trial was actually only looking at mets that did NOT completely respond to Ibrance/Femara- therefore a trial looking at how Ibrance-Femara-Keytruda might affect the time to progression for bone mets patients or for others taking it as a first line treatment, could well come to different conclusions compared to the City of Hope trial
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