Ibrance (Palbociclib)
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Hi everyone. I love the uplifting spirit of everyone! I hope this is the correct forum. I'm a little confused and wondering if anyone else had a similar treatment plan.
In 2010, breast cancer, BRCA positive, bi-lateral mastectomy, bi-lateral oophorectomy which put me in menopause. So with that I was on the 5 year Arimidex plan, that regiment ended in 2015.
Fast forward, diagnosed two weeks ago with Metastatic Breast cancer, biopsy, etc., cancer found in 3 lymph nodes in the mammary chain.
Next week I will start on the Ibrance/letrozole treatment. But I thought if I was on a previous hormonal therapy (Arimidex) this wouldn't be the appropriate combo? Anyone else on tamoxifen or Arimidex as part of your past treatment, and now on the Ibrance/letrozole combo?
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westiemom, I think you'll find that most of us have been on a hormonal in the past. We have brilliant scientist/survivors here who are going to be able to explain to you how Ibrance ups the effectiveness of an Aromatase Inhibitor. I'm not that person but I can tell you this - lots of us are achieving everything from Progression Free Disease to No Evidence of Disease! You can do it too! We call it the Ibrance Dance and we welcome you to our happy little circle. It may take you a little while to wrap your mind around this new MBC diagnosis but you'll get your bearings soon.
I'm a 24+ year 1994 BC survivor and have had two mastectomies and bilateral oophorectomies too. Looks like there's a lot of you and me in the landfill, my friend. Hey, it's not what we've lost but what we have left that counts, right? I was first metastatic with a 1cm chest wall node in March of 2012, took Taxol/Carboplatin, then started on Femara (letrozole). Femara and I didn't get along well and I decided, since I was NED after chemo to stop treatment after 18 months. I didn't scan regularly, just decided to live my life. When I had new pain i had a PET/CT in September, 2016, and was diagnosed with widespread bone mets and one internal mammary node lit up. Okay, that's the unhappy part but it gets good again! After 3 months my scan showed a remarkable response to Ibrance/Arimidex/XGeva! Six more months and I had just one tiny spot (that node) showing a whisper of FDG on the scan. The bones look to be healed. I'm 21 months out and that's how things remain as of June 2nd! They even think the node may not be malignant.
I take Turmeric to help me avoid some of the discomfort I had with Femara. So far, so good!
All this to say, my friend, that you can look forward to wonderful results and join us as a pioneer while we get closer and closer to a cure. If the Ibrance is costing you anything beyond $10 out of pocket let us point you to some resources.
Here's to healing and great peace, westiemom!
Love from your new friend who will be praying for you every day,
PatG
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westiemom, welcome to the forum. Although we would all prefer to have no reason to be here, once you're diagnosed with MBC these forums are the place to be for information, compassion, a good vent or just a pick-me-up (Pat G. is one of our resident experts on that last one).
Regarding your treatment, because you didn't have a recurrence until three years after stopping Arimidex, your doctor has good reason to believe that you are not yet resistant to aromatase inhibitors.
Are you going to respond for as long as someone who's never been treated? No way of knowing. Maybe you'll respond better. Maybe your cancer is really dumb and didn't figure out a way to get around the AI, that's why it waited until you stopped treatment to grow back. Maybe you'll respond less well because a couple of cells did figure out a way around arimidex and they will at some point take over. But either way, any time you get on AI's is time added to your life. If you don't respond to Letrozole/Ibrance, you can always switch the Letrozole out for Faslodex. I've not seen the reversed sequence (faslodex first, letrozole later) used as frequently, so your best chance of getting that "letrozole time" is now.
Please do confirm with your MO that if it does turn out the L/I combo doesn't work you would be able to take faslodex (or another CDK inhibitor like Verzenio) WITH Ibrance later. If CDK's would be out of the running upon progression, that would change things and make the decision a lot more difficult.
Good luck!
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Pat & Piggy99, thank you both so much for the encouragement and assurance! You have no idea how much this means to me. Didn't plan to be in this position ever, much less again but here I am. I read most of the comments on this thread, the support is amazing and strength is inspiring!
Pat, YES!! ((happy dance)) your results are awesome!! I may need the information regarding the out of pocket cost. I start my first cycle this coming Thursday, time to tackle the beast!
Have a great weekend!!
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westiemom, has anyone mentioned the cost of Ibrance to you ($11,000+ a month)? The co-pay alone is crazy. If your primary insurance pays 100%, good for you! If not, you can apply for co-pay assistance through the PAN or PAF foundations. If they are out of money at the moment, you can get the drug free from Pfizer. In fact, you might want to call Pfizer first. I've found that their people are always aware of who has money for assistance. Your oncologist may have an assistant who puts through foundation applications. You might want to check this out before you get the first prescription and save yourself thousands of dollars.
Good luck!
PatG
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Gracie, adding my voice to the chorus of support. And echoing Piggy, do ask if you're eligible for liver-specific treatment. I've read many success stories about Y90 and other options eliminating liver tumors and keeping it clear for a long time.
westiemom, wish we met under different circumstances but you'll find strength here in comfort, compassion, and knowledge. This treatment is very doable. The first couple of months are the toughest as your body adjusts. My tip: if you can, wedge in walks or any other exercise you can tolerate. The more you move, the better you will feel. Got questions? Nothing off the table here.
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Leapfrog & Anna & Husband -- my ANC has been between 1.1 and 1.5 and this Monday it was 0.9. I was reading up on foods that could help boost neutophils--mushroom extract, ginseng, zinc, probiotics. Not sure what my ONC would let me take, so I was going to ask. I had been taking probiotics and ran out...hadn't replace them yet when my ANC went down. Going to buy so more and try that again.
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I had a breakdown tonight--haven't done that in quite a while. Right in the middle of Facetime with my family. The trigger was stupid, but it was just the tipping point that sent me over the edge. Sometimes I just get tired of not feeling good and it just happens. We have to let ourselves be real and let our families see that even though we look like we are doing well, can cook a big dinner, and our scans have good reports, we still struggle with this. I hate it, and I had to leave the room so I wouldn't scare my granddaughter who lives with me. Knowing you are all here and going through the same thing helps me know I am not alone and not going crazy. I'm not, right?
Thanks for listening.
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intolight, no you are not going crazy. This is an overwhelming disease, and sometimes it just gets to you. We all live with uncertain tomorrows and need to learn to live in the moment, which isn’t always easy. Allow yourself these moments. As much as we would like to be, one of us our superheroes! Wishing you peace.
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If you're going crazy, IntoLight, we're all going together! My daughter tells me she's amazed I'm not breaking down every day, so there's that. We all do the best we can, which, if you think about it, is really impressive!
The amazing support I've gotten here, even if I don't post and just read others' posts, has been, quite literally, life saving. So thankful for everyone here!!
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Ciaci is right - we are all going crazy then!
IntoLight - I can carry on and everything is rosy and great. I plan meals, cook, look quite healthy actually and so it is hard (impossible) for others to 'get' it, that inside I have pain, anxiety and even sadness. Most of the time I am very grateful for being here, I do believe God has a plan and we are all part of it and I accept it...some of the time I get very angry. Last week I was facetiming with family and I had to leave as I started a meltdown and did not want them worrying.
I am so very glad to have this site, if I am not posting I am usually keeping up and I can almost always find comfort - Hugs and best to all of you. Janice
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IntoLight, definitely not crazy - thank you for opening up and sharing. Like some of the others said, I'm surprised we don't melt down more often...
You know how people say "every cloud has a silver lining"? In MBC it's more like every ray of sunshine has a streak of darkness. Every good scan, every celebration, every milestone carries with it the quiet question "Is this the last one? Will the next one be the last one?". I know that's really the case for everyone, as nobody's time on earth is guaranteed, but before cancer I certainly didn't THINK about it.
Most of the times, you can swat the thought away and get back to the happiness of the moment. But every now and then you have to let the darkness pour out so it doesn't drown you and so you can get back to living in the light.
((Hugs))
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I posted this on another thread but I want to share it with you, too. If you do Facebook (who doesn't?), you may have seen it. That's where I saw it first. It is very affirming and gives validation to our feelings when we look fine but are not. Good read if you have time.
https://www.cancerhealth.com/blog/dear-every-cancer-patient-ever-took-care-sorry-get
Been having my own little meltdowns lately after third UTI in a row. My urology NP is leaving, the urology practice patient portal is broken and they combined their phone system with their larger practice and it is impossible to get through. Have I said all this before? Feels like it. And two weeks ago, the hospital lab LOST my urine sample so I had to wait an extra week to get diagnosed. So, even though I never cry, several times last week after leaving a doctor's appointment, I sat in the car in tears.
Chris, you and I are at about two years on I/L and as great as it is that it has worked that long, the longer I go, the more I think that it could stop working at any point. And that is more likely as time goes on. I try to be optimistic and you guys help with that but it is not natural for me (can you tell?).
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jaycee49 what a great blog! Thanks for sharing!! All of it is true, the part that really hit me the most; was that I too felt like I needed to apologize to my husband for the getting sick. The week before I found out my cancer metastasized we were looking at cute little broken down properties on the lake, fixer ups, he is retired and I’m five years away...this is where my rescue donkeys, dogs, cats and whatever other furry creature wants to join us could live out their days. My husband said, you DO NOT need to apologize and he said wonderful words of encouragement. We are still moving forward with our “dream retirement” plans but inside there is a part of me melting with sadness.
Piggy99 ....every ray of sunshine has a streak of darkness....very true. Swatting away those awful thoughts is great advice, something I try to do as much as i can.
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Jaycee, thank you for the blog. It says so much. I am still a little weepy this morning even while holding my precious DGD while my DD visits the Dr. She is very sensitive and just wanted to hold Nana this morning. God sends us joy even in the midst of the storm.
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Jaycee, and all others worrying that you are approaching the 2 year "deadline" - as counter-intuitive as it may be, once you've hit the 2-year mark your chances of making it another two years are actually slightly better than your initial chances of making it the first two years (assuming the current trial data holds). Making it to 4 years is less likely than making it to 2 in general, when you're standing on the START line, but not once you've made it the first two. Of course, I'm talking about "cohort" chances, as your individual duration of response is set by your biology and it is what it is from the start (this applies to any statistics we look at).
In the long term follow-up for Paloma-2, the 2 year PFS rate was about 52%. If 100 people start taking I/L today, about 52 will still be progression free at two years.
The 4 year (OK, 47 months) PFS rate is about 30% (there are not a lot of patients that have been followed this long), but let's assume this holds once they have more patients. That means that out of those 52 people that were still going at two years, a full 30 will still be progression free at 4 years. If you already know you are one of the 52, your chances of making it to 4 years are ~57%.
Most "survival" curves look like that, with a decay rate that flattens with time, until you are left with an enduring "tail", where the passage of time seems to have very small effects on survival - the further you go, the higher your chances that you have the lucky biology to end up riding that tail.
BTW, the Perjeta/herceptin combination results from the Cleopatra trial looked similar, with a median PFS of about 18.5 months, and we know now that there are people on that "tail" who live many, many years without their cancer progressing.
Hoping Ibrance/letrozole also gets a really long, fat tail and that we can all hang on to it for many years!
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Thanks Piggy99 for reinforcing that idea that I assumed to be the case. For some reason, it just makes sense. But worrying is what we do. I had a Pet/CT on June 6 and will get the results at my MO appt on Wed. I would have done it sooner (gotten the results) but the UTI's interfered with my cancer worrying. The Pet just seemed minor for while. Now, I really want to know what it says. I'm seeing the doctor who is giving the presentation on CDK4 (no 6) at my cancer support group on Sat. so I'm interested in what he has to say. I'll try to report back about the presentation if I can get my concentration going. My mind seems to drift around lately. Is that a side effect of the drugs? I think it is but I can't remember, also a side effect.
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I have been catching up on the posts from the last couple of days. This is why I love this site and you all. YOU GET IT !!!!! YOU TRULY GET IT !!!!! And we are there for each other.
Cancer-free people just cannot understand, as I did not before my diagnosis. People I see out and about say " You look good ". I have gained some weight with the lack of estrogen ( Lupron and A/I ). I have always been small and then I lost weight with the surgery and chemo. Also my hair has came back in full and curly. And I think the general public thinks I have licked this cancer, but they truly do not understand Stage 4 and what it means. Every ray of sunshine has a streak of darkness.... so true. I like my hair curly, but I have to think I may lose it again someday when we have to change treatments. I think losing it a second time will be harder than the first time. And even happy times are tinged with sadness- knowing I will probably not live to see my young niece and nephew grow up to be adults. My sister tells me I am strong. Little does she know that I show the world a strong persona but inwardly I am a wreck.
Yesterday I had my ANC count checked to make sure I could start my next cycle of Ibrance. I was at work when I got the results----1100. I was excited that I could start my medicine back the next day. Good grief, what has my life become. Excitement over a blood test, and the level is not even within 'normal' range.
Bless you all.
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This site is so great! I can usually find answers to my questions right here from all of you; there's almost always someone experiencing the same things.
Jaycee, (Janet), you were mentioning the UTIs that you keep getting. I also got a horrible one a month ago and that was the first I've had in many, many years. I'm thinking maybe it's the Faslodex causing some problems. After getting the shots, my urine smells horrible the next few days, almost like kerosene! It gradually fades away but I do notice sometimes there is an "uncomfortable" feeling or even maybe a slight burning. The UTI came on 24 hours after the shots. I took some antibiotics for it and actually felt better in lots of ways for the month.
Another thing about the injections for any of you new to this, make sure whoever is injecting you takes their time!!! It can make a huge difference! I have been injected by a male nurse twice and both times have had lots of pain and swelling afterwards. He has a tendency to rush things. The female nurses take more time and I haven't experienced the same effects from them. Not to say the females are better than males at giving injections!!!
IntoLight: I think all of us have our moments when it becomes too much. Most of the time, I laugh, joke and enjoy life but this month has been a little difficult for me also. Just not feeling well right now and can't imagine going on for a number of years like this---altho' that is my plan!
NettiGER: Thanks for posting about tumor marker results. While my CT scan shows no progression and my bone scan actually showed some slight improvement, my tumor marker has been steadily rising, really high. My doctor said he would be concerned if it wasn't for the tests showing stable or positive results. I was still a little worried till I read your message.
Wandering: I'm in a rural area (maybe 5000 people spread out all over) but drive 70 miles round trip from my home to go to the cancer research hospital in a larger city. The only bad thing about using this center is that the doctors move on after a year and you end up with another new one; like starting all over again. I really, really loved my last doctor that just graduated and I hope I get another good one. Nice when you get a doctor that actually makes you feel like they care!
MountainLady, yes, I know just the area you're talking about! Not that far from me at all! I'm south of the Walgreens, up over the hills---probably about straight east of you!
This is my first month on a lower dosage, 100mg, and I seem to be having more problems! Crazy! Several months ago, I had diarrhea so badly I ended up dehydrated. Now it's back again. My doctor suggested taking something for it, which I did, and it has helped a little but now I have extreme flashes of pain in my abdomen (various places) like being stabbed with a knife. Also very tired this month and no energy; just want to lie on the bed. My electrolytes continue to be very low even though I'm drinking a lot of fluids with added electrolytes.
Husband11, I also read about the trial testing 5 days on, 2 days off, rather than 3 weeks, 1 week. I may try that this next time and see if it helps a little. I was hoping the lower dosage would make a positive difference this month, but not so far.
For the many, many of you I didn't mention personally (I'd list names but I know I'd leave someone out!), thank you so much for taking the time to share your successes, trials and tribulations with all of us. I do read all of your messages but I'm usually just lingering in the background. Hoping healing light surrounds all of us!!
Janet B.
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IntoLight...thanks for sharing your feelings. Sometimes I just think I can't do this. We all are trying to keep smiles on our face for family and friends and it's hard. This week Pet Scan.....2 yr mark. Will find out next Tues. the results. Waiting to hear back from Pfiser to see if they will help with Ibrance cost. Grants are out of money right now. But as someone said we are still here and do have a lot to be thankful for.0
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I have several doses of Ibrance leftover, I wonder if my pharmacy would take them back and get them to someone who can't afford them? I think that I will call and ask them?
Just thinking out loud. I will let you know what they say.
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Claudia, my MO's office collects unused Ibrance so they have a supply for patients who need it.
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Will someone please tell me that your body gets "used" to the Ibrance. I am only on day 14 and the shortness of breath is just killing me. Even when I lay down my heart races and heavy breathing. Other than that I seem to be handling the other stuff Ok.
Jaycee - very interested in hearing about your seminar that you mentioned on your blog. A great blog, BTW.
Many prayers for all of us - chrissy
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Had a wonderful weekend in Chicago with my sister - saw HAMILTON, ate great food, drank great wine, did lots of touristy things. And man, am I paying for it. I slept about 20 hours on Monday, still tired and sore today. But it was SO worth it! MBC isn't going to keep me from living my life, dammit!
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Chrissy,
The first month on Ibrance is the hardest-the white blood cells usually tank on day 14. But if you are having extreme shortness of breath, I suggest checking in with your MO to make sure it is ok. I assume you are having blood tests today or tomorrow?
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Peculiargirl,
Glad you enjoyed our beautiful town during the heat wave. No wonder you are tired! But keep on living life to the fullest! I think it is one of the best ways we can fight the cancer.
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Peculiargirl, happy you had a good time. Yes, live life to the fullest and enjoy your family. My son lives in Bowling Green, MO...didn't know there were so many!
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Thanks, Chicagoan! It WAS hot - but we had a great time.
IntoLight, we have some friends who live in Bowling Green, Ohio in the summer, and spend winters in Bowling Green, Florida!
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Chrissy, I mentioned my shortness of breath to my MO's assistant when we were reviewing my blood work results after my first cycle. She said my red blood cell count was low and iron supplements might help. I just bought a bottle and i'm going to try it. The instructions say to wait 2 hours before you take it if you've eaten dairy products or taken a calcium supplement. It also can cause constipation so I've added Metamucil to my daily routine.
Do you know what your RBC count is?
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Hi Jaycee! How are you doing? I saw your post elsewhere regarding other issues. I go to Mayo, they don't do that. However, when I spoke to the specialty pharmacy about my Xeloda order I asked them. She gave me the name and number of four places that might. She also mentioned our County Health department, I will call them first tomorrow. I have so many drugs that I either couldn't take or don't need anymore, they should go to someone who needs them. Especially the Ibrance! I have several 100mg and several 75mg pills left.
Yay, peculiar!! Sounds like a lot of fun!
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