Ibrance (Palbociclib)
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Bless you, Cure-ious!!! 5 years for that one patient was an awesome ending to your post about a study with great results! Yay!
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Buddahead: I am on the same medications that you listed. I am wondering how long you have been on each. I have only been on Ibrance for 1 cycle but Faslodex for 2 years and Xgeva for 5 years.
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Hello all,
So my MO stated he is not going to take me off ibrance for one small bone met that is not causing any pain. I am taking a 2 week break from letrozole due to general bone, muscle and joint pain. If there is improvement in symptoms we will try something comparable to the letrozole. I will also be having a port placed soon since i am a very difficult blood draw and iv placement is brutal. Im still concerned that the mo would keep me on ibrance even though i had progression. However, i trust his judgement. Anybody else have this situation happen?
Melissa
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Lisalou
I did not have that exact call but my rib met was not a target for radiation bc it wasn’t causing me pain and the ibrance did take care of it bc it’s not seen on the PET anymore.
I did recently get a port in April bc my veins in the only arm that I can use are shot and I usually take 2 sticks sometimes 3 to get blood or infuse.
The port has only been used once and it works. It’s still sore but working well so I am resolved to get used to it.
I hope this is helpful. Rest easy tomorrow some ladies will check in with more beneficial info.
Take care
Tanya
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lissalou, my oncologist says we won't stop Ibrance for something small unless I choose to (which I may do for a brief time). I took Letrozole after I completed chemo for the first MBC diagnosis in 2012 (chest wall tumor). I finally decided to stop when I could barely walk (leg pain and misery when my feet hit the floor) and started to lose the use of my right hand. Within 6 weeks of stopping, all the symptoms were gone! It was great and I chose not to have treatment again until the widespread bone mets showed up a few years later. When I agreed to the Ibrance + an AI, I chose Arimidex and started taking it with Turmeric (MegaFoods brand on amazon.com). I do have some foot aches and some discomfort in my hands but nothing like I had with Letrozole. About the port> You are going to love it! They would have to chase me through the woods to take mine away! Sometimes it feels a little weird and achy the day after it's accessed but nothing to complain about. I had pneumonia this winter and coughed so hard I got clots in it but the chemo nurses used a Clot-buster and fixed it. The only advice I would give you is to always be hydrated when you go in so it's easy to access. Good luck!!
Thanks, Cure-ious, for the information you keep sharing!
Huge thanks to all of you, my friends, for the concern and good wishes. I wish you could all come over and eat the rest of those Magnum Ice Cream Bars that are calling my name. I have stopped drinking the freshly made Kale Juice from Whole Foods ($7.99 a serving!!) as neither my gag reflex nor my pocketbook can take it any more. If they discover that Kale is the Kure, I'm just going to update my will and krawl under the kovers!
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Hi all- So much information coming out these days! I guess they want to get it out there before we go crawling into summer and no news..
This is a great clip about Abemaciclib, which I will cross-post on Abemaciclib thread. Says it is more potent, may hit more kinases, works better on more aggressive disease (maybe due to continuous dosing) and is better for luminal B (ER+PR-) subtypes
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Pretty sure this was mentioned somewhere but can't find it. Does the WBC lowering from Ibrance get worse over time like any other SE or can the first CBC results give an idea of the future trend? My wife has been on it for just 1 cycle but her wbc is not bad at all. Platelets on the other hand dropped. Not surprising considering she has always been on the lower end within range.
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Daniel, I don't know about others, but my own WBC counts vary, from within acceptable ranges to teetering at the low end. I had my Faslodex shots yesterday and my blood tested for starting cycle 17 of Ibrance tomorrow. The count was on the low end, but the onc nurse noted that this had happened for me before and that the counts typically bounce back fairly readily without any sort of intervention. Thus, for me, it is not a consistent but rather a do-able/up and down graph path.
Cure-ious, thanks so much for the link to the information about abemaciclib. Very interesting and encouraging stuff!
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pat gmc I can only eat baby kale otherwise it’s a gag fest.
I will try the turmeric
Thanks
Tanya
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Which pill is culprit Ibrance or Letrozole.???.My guy dropped me off to see my mom..I got out of the car..SO lame from waistdown..Walked .NOT...limped halfway down a long corridor..hips. knees. shins..Dissipated as fast as it started..nothing since..Mom is 101 as I mentioned..I felt much older!!! Nausea / heartburn.hard for me to tell which it is..continues .Will address it next appt in June unless it gets worse I will call my MO.
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Lakewoman, Letrazole is definitely the culprit when it comes to your mobility. I’ve been on it for over 3 years and can hardly walk. Joints, tendons, ligaments and muscles all affected. I recently started taking osteobiflex at the suggestion of my acupuncturist and am hoping it will make a difference.0
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Hi there. I know this post was a while ago, but wondering how you are doing! As now I am newly diagnosed and on Ibrance and Letrozole.
Looking forward to hearing from you
Juli
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I heard something interesting from my onc nurse yesterday during my Faslodex shots. She was doing her monthly update on my health and status, and she remarked, "You're doing so well, AND you've stayed on the 125 mg dose". She sounded surprised, so I asked her what her experience was with others on Ibrance. She replied, "Almost all end up on the reduced dosage". I hadn't realized that.
Julie27, to whom was your question directed? Thanks, and good luck on Ibrance and Letrozole!
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I am newly diagnosed stage 4. Having some swelling after round 2 of ibrance. Just wanted to see how you are doing.
Thank you Julie
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I know someone who is doing a trial of the 5 days on 2 days off. I'll report back on whether that improves neutrophil counts, fatigue, etc. If it works, it should show results pretty quickly I would think. The idea is that a shorter break from treatment will make it more effective against the cancer, yet give the bone marrow more frequent relief from treatment and boost blood counts. We will see.
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Cure-ious thank you for all of this terrific research info. So very grateful! As you said recently we are all wondering what might be next,and this latest research is pointing in some very encouraging directions.
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The question of whether Letrozole is the culprit or Ibrance— I was on Anastrole for the first 7 months but was forced to switch to Letrzole to maintain insurance coverage.
After a few weeks on Letrozole, one eye began to burn and tear, my scalp burned, and my hair began to thin. (The hair thinning stabilized after a few months.). Not major stuff but I noted how I had these new side-effects. My MO thought it was just coincidence but that was a little hard to believe.
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Julie — there are newbies on this board, women like myself who have been on this combo for many months (I'm on my19th cycle), and some approaching three years with terrific results.
Side effects are often relatively mild (fatigue, some minor hair loss, rashes) though a few have more severe reactions
When side-effects are severe or blood counts are too low the dosage is often reduced (mine from 125 to 100 several months ago) but the efficacy is apparently not compromised. I have not have swelling but others can weigh in
Take heart and have hope! Most of us settle in to a pretty good new life/routine, manage side effects, and thank the stars ( or whatever we believe we should thank
for these extraordinary new medications. Sorry you need to be here but glad to have your company!
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Interesting week as Pfizer has changed their delivery system for Ibrance. The result for me is that I ordered my next cycle supply 10 days ago and tried again a week later. As of today it still hasn’t shipped. I’m out...
The Customer service reps can’t fix it. Yikes!
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here is a link to a study on joint pain on aromatase inhibitors- they found that adding Omega-3 supplements reduced triglycerides and significantly reduced joint pain, but only for overweight patients (BMI greater than or equal to 30)- worth giving it a try, anything that could help this problem we all have...
http://abstracts.asco.org/214/AbstView_214_221581....
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Joyner, don't drop, I am following you! And I heard a clip where Hope Rugo says she tries to keep her patients on full dose as much as possible- am more fixated on trying to decide what should come next.
One option is the Sandpiper trial testing Faslodex and a PI3K inhibitor (Taselisib), which degrades the PI3K receptor same as Faslodex degrades the ER. You need to have a mutant (which makes the kinase more active than normal) in order to respond to the drug, and we are all waiting for June 2 to find out what kinds of numbers they got for response rates in that trial, and average time to progression. PI3K is in the same pathway as mTORC1, which is target of Affinitor, and so the side effects seem kind of similar (stomatitis, rash, etc) and apparently you have to be very disciplined when taking it, but is manageable. I think they got around 10 month time to progression on Affinitor-Aromasin in the Bolero-2 trial, so we'll see how Sandpiper compares to that. On the Taselisib twitter feed, a woman commented she just started cycle 24 on this drug combo..
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TY Lynnwood...for your input..Must be a reason for Ibrance with Letrazole..Five years on Arimidex. when first diagnosed BC..some fatigue and of course major multiple hot flashes..but that AI was doable..But maybe this won't happen again!!
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Cross-posting here a discussion from ten months ago about Sandpiper trial with PI3K mutated cancers, as a secondline. They had already 36% response rate at that time, very good. Side effects hyperglycemia and stomatitis, for the former I bet it can be fought by taking a longer fasting at night, more time to drive down the blood sugar levels:
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Also, the PI3K mutations can be detected in circulating tumor cells, if/when this technology rolls around to our doctors offices, we have much fewer scans and can monitor response to the drugs in blood workups done in the lab:
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Wandering: I've been on Faslodex for a few months. They did the dose loading every 2 weeks for 3x, I think and now I"m monthly. I'm on my 4th round of Ibrance, but have been instructed to stop due to infection (looks like cellulitus). Xgeva for 6 months. I get it every 8 weeks. Negotiated that with my onc because previously took it monthly and it really made me ache.
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Just a note on Letrozole, for what it's worth: When I took this AI back in 2012-14, some months my side effects would have wild swings. My oncologist, as fine as they come, was skeptical that this was a result of the Letrozole. I mentioned it to the pharmacist and he said this was common with generic AIs. He said they attribute the differences to the fact that those drugs come to them from different factories all over the world and they think they are each slightly different. The pharmacies were always cutting the best deal, of course. Interesting, huh? And kind of creepy.
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I did a little unintentional science experiment this week: I forgot to take my Claritin (or loratadine in my case) 2 days before my Faslodex shots, which were on Tuesday. I took the first tablet on Monday night (rather than on Sunday morning, as scheduled) and then on the day of shots (Tuesday), again on Wednesday, and will take today (Thursday). As unusual for me, the shots themselves weren't particularly painful; I have a great nurse. Usually, I am aware that I've had the shots (a little general tenderness in the area) the day of and perhaps a bit the day after). This time, however, my fanny started being really sore yesterday (day after) and has continued to be painful. I also feel stiffer than usual. I'm attributing all to my dereliction of duty with the Claritin. For me, at least, the Claritin seems to make a genuine difference.
Cure-ious, I have no intention of dropping my dosage unless I need to. I hope that I don't, as rule followers (my picture is beside the definition in the dictionary) tend to twitch if coloring outside of the lines. I just found it very interesting that in this large oncology center, most Ibrance patients (at least in this onc nurse's care) have had to go to a lower dosage. Thanks, also, for the great links!
Hugs to all....
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Getting ready to go in for my Zometa infusion this morning, every 3 months, and I am still on my original 125mg Ibrance and Letrozole prescribed 2 years ago with my initial dx (5/20/16). I am currently NEAD. Some days I am good and others I just hang in there, but I have a good rhythm to my days. This is doable. I appreciate everyone on this site and eagerly read the research for next steps.
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Thank you for all your kind thoughts and encouragements for my PET/CT scan last week. The results so far (after 3 cycles of Ibrance, the first one with Tamoxifen and the next two with Letrozole) are hopeful. Only physiological uptake seen in the breast (instead of a couple of FDG-avid tumors on the original scan); near complete resolution of previous FDG avidity in skeleton (I had multiple "hot spots"); decrease in size and FDG avidity of multiple axillary nodes (the biggest/brightest one went from 13.3 SUV to 1.9 SUV) and best of all, still no organ mets.
I couldn't have hoped for more, and the only things stopping me from cartwheeling on the front lawn (other than my age) are the fact that lobular cancer is pretty sneaky and you can never be 100% certain that "clear" is really "clear" and the knowledge that a great early response doesn't guarantee a long response. But I know how fortunate I am to have these medicines available and to have a good initial response, so I won't borrow trouble thinking about what may or may not lay ahead. For now, I will celebrate and focus on living my life the best I can. Oophorectomy tomorrow, oh joy!
Best of luck to us all!
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Oh, Piggy....fabulous news!! HOORAY!! And good luck with the oophorectomy tomorrow!
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