Ibrance (Palbociclib)
Comments
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My goodness I don't check for 24 hours and look at all of the wonderful posts. What an amazing and beautiful community!
I'd like to respond to at least 10 posts I've just read but I'm running to meet an old friend (or friend of old as we like to say
So just a few comments:Cure-ious, I remembered from a post of your a few months back (was it an exchnage with NettaGear?) that you are a scientist. I'm always so very grateful for your research and insights. Thank you for the Affinitor background. Fascinating.
LeapFrog, I'm de novo too and I know there's something about knowing that there was all that time before our dx that is unsettling. I get it. But you can take it -- our cancer may indeed have had a lot of time to spread, but we're still alive, it's "only" in our bones, treatments are keeping it at bay. That might mean ours bodies are extra adept at fighting it. I've had SO many aches and pains over the last 18 months ... and so far they've all been nothing. None of this probably helps at all ... just know I do get it.
Janet, my scans found several broken bones last year that were in the process of healing. After an initial scare, for what it's worth, none of it turned out to be cancer related!
Pat, thank you for the beautiful posts. :-)
I need to run for now ...
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Penny!!! You go, girl! I knew that the CDK7 inhibitor had gone into its first patient about a year ago now, but could not find the info and gave it up, hadn't considered that the drug has since been re-named! They say the results of phase 1 70 patients will be reported end of the year, so far I don't see anything about what they are finding in the way of side effects.
They are also following CDK12, which is a great target for a drug, and in fact there may be some significant cross-reactivity in CDK12 inhibition from their CDK7 drug. CDK12 is needed for cells to repair damage to DNA, and therefore inhibit CDK12 and chemo kills a lot more cells. And when a CDK12 inhibitor is added it makes PARP inhibitors work on all cancers, not just BRCA mutant cancers, so they want to do trials with these drugs plus a PARP inhibitor...
And just to close this loop,PARP inhibitors are working well in triple-negative breast cancers. Today is was reported that half of patients with metastatic triple-negative breast cancer achieved disease control when treated with the combination of a poly (ADP-ribose) polymerase (PARP) inhibitor and Keytruda immunotherapy. Overall, 13 of 46 evaluable patients had objective responses to treatment with niraparib (Zejula) and pembrolizumab (Keytruda), and an additional 10 patients had stable disease, and even those without BRCA mutation showed responses. So those PARP inhibitors might be good stuff too, still too early to know, but its interesting to consider that these might be future combos for us.
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Janky, I totally agree that it’s the wait that gets to us! I can’t access my reports at all until my onc releases them, and he doesn’t ever do that until the day I see him. The only thing I can access in our patient portal is my blood work up. Sucks!!!
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I feel 'old' as I was 21
- 64 now and hoping for many more anniversaries and birthdays for all of us!! 0 -
Hello,
Has anyone switched from I/F to exemestane and ibrance? I was feeling extremely fatigued and had awful muscle, joint and bone pain on femera that my mo said I could switch to exemestane. However, I'm worried about the new side effects and the fact that exemestane has a steroid in it. Any help would be appreciated.
Melissa
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Melissa, I had a hard time with Femara. I'm on Arimidex which is another in the AI category and the side effects....achiness, etc....are not as bad. I did add daily Turmeric and I wonder if that makes the difference. There are some here who doubt we should use Turmeric with Ibrance but I'm 20 months in and have done well. I get scan results tomorrow and I'm hoping that has continued. I wish you the best! PatG
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A question: I typically have few side effects other than general fatigue. However, I tend to get very easily short of breath. If I play with the puppy for 5 minutes, I'm panting afterward. Walking up the steps...same thing. So far, my mets are limited to bones only. Is shortness of breath a recognized SE of Ibrance? I'm on Ibrance, Faslodex, and Xgeva (17 mo) and have no reason to suspect lung involvement at this stage.
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Thanks Pat, onc advise to wait as neutrophil at .8 after days off and wants PET scan. Not able to complete cycle 2 yet.
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Joyner, Is the shortness of breath something that recently developed or have you been experiencing it all along? If it is new, you should call your MO. He or she might want to do some tests to rule out a clot in your lungs. It is an uncommon SE of Ibrance, but certainly one worth checking into. My other thought would be anemia. Are you anemic? Mild anemia usually doesn't cause that issue, but I had severe anemia when I was first diagnosed, and I couldn't take two steps without that shortness of breath.
Let us know how you are doing.
Hugs and prayers from, Lynne
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I know I haven't been around much. Been dealing with UTI number 647 or somewhere in that range. I have a new PCP working on it and want to be hopeful like I always am but then my hopes get dashed. Maybe this time, she can figure something out. I'm also going to an infectious disease specialist. Pet scan today, which always turns into an all day affair. I don't mind at all. Gives me something else to think about. Cancer almost seems like a low priority item right now, if that makes sense. I read all of your posts daily and feel connected in a good way. I just want to know why a bunch of us realized we were all 68 and you are all still 68. I turned 69 in March. Do you not have birthdays or do you just skip them?
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Jaycee, sending prayers and good thoughts for your scan today. Hope they can figure out the UTI thing...I have had a few but it is not too bad yet.
I am 65 and relish Bdays as it means I am still here!
Blessings to everyone.
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Thanks for your reply and thoughts, Lynne. The shortness of breath has been generally getting more noticeable. I see my onc nurse in 2 weeks, so I'll check in with them then. Otherwise, I feel really good. I do take naps every day
. They also do blood work every time, so I'm assuming that they'd pick up on the anemia? I'll ask her about that, too. Thank you!0 -
I am 73 but I should have quit counting when I hit 68 then I could join in with the "68" crowd. My husband is 79 so I guess I need to keep counting to keep up with him. I will pass the 5 year mark on September 7th. Didn't think I would make it this long when I was first diagnosed. My mother lived to be 96. We have not had any cancer in my immediate family - mostly cardio. I always thought the cardio would do me in but maybe not. Daddy lived to be 53 so I am just about in the middle of both of them. I am in a cancer support group in Helena, Montana, but only 3 in the group have MBC so the meetings are not especially relevant to me which is why I appreciate this group so much. Thanks ladies.
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Joyner, I get short of breath pretty quickly. I especially feel it when I bend over. My oncologist is not alarmed. I have just filed it under "it is what it is"!
Wandering, I led BC support groups for many years before I had MBC. I look back at my early stage self and realize how much I learned from the women who had advanced disease. Their words, their faith and their ability to show up for the fun stuff taught me the skills I'm using today. You're such a gift to your group, my friend. You may not know how much of a gift and they may not know it but one day they will!
jaycee, I pray your PET scan is good with that FDG finding no place to light up. I could turn 69 in October or I could remain 68. I'll decide then!
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Good after noon ladies,
I'm 60. I got married at the age of 22. 38 years of marriage. My husbands been a champion supporter while I go through every aspect of this journey. Even still you ladies with MBC understand more than anyone what this diagnosis is.
I have PET scan tomorrow. I'm eating protein no carbs not caffeine today. I had an MRI Monday and haven't received the results for that yet. I have an appt. with my ONC Wed. and expect to get clarified results then. This month marks one year on Ibrance.
I'm praying for everyone's good results on their scans this week and always!
Pat Mgc Thank you for sharing your PET experience. You are courageous to share that on FB.
Tanya
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I plan to celebrate every birthday with great gusto. I now consider every birthday to be another victory. Wandering, there is no cancer in my immediate family either. Both my parents lived well into their 80s. My father had high cholesterol, high blood pressure, and diabetes. I have none of those. My sister, my only sibling, passed away at age 36 from aplastic anemia, so not anything hereditary. I am actually a picture of health except for this little MBC issue. I always get a chuckle out of the Medicare questionnaire that I complete every year when I see my PCP. There is a question asking me to rate my health. I think about it and always check off "Excellent" and wonder if people shake their heads and think I am crazy when the see that. Actually, I did change it to "Very Good" last year but only because I was recovering from kidney surgery. When I see my PCP later this month, that check mark will be back in the "Excellent" box. Am I living in denial?
Lynne
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PatgMc: Thanks for your sweet comments. I seldom attend the support group since I am 50 miles (100 miles round trip) from town. I usually go 3 to 4 times a year. We had a retreat in April for two days at a spa which I attended and enjoyed a great deal. I got to know some of the ladies who never go to the meetings since they are held at noon.
50sgirl: About a year after I was diagnosed with MBC, I was feeling so well I asked my oncologist if he had misdiagnosed me and I just had a case of the flu. He rolled his eyes (which is a very strong reaction from him) and didn't reply. I like him a great deal and feel fortunate we have him in our small community (around 40,000). Most of the ladies in the support group (around 90) go to him and we have a "love fest" discussion about him at some point during most of our meetings.
Sun is out, birds are singing, and the hummingbird feeder is empty. As my dear mother used to say "and that's all the news that is fit to print".
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Best of luck to all with scans and/or scan results upcoming!
Lynne, I'm sitting here laughing at what you said about assessing your health as "Excellent"! I have done the same thing! I consider myself in excellent health. I eat [generally] properly, my weigh is what it should be, I exercise, blah, blah, blah. It's just that one little Stage IV thing.....
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Joyner: I am also experiencing shortness of breath since I started I/F. I am not able to do all three staircases in our house at once, I have to take a break after two. I am not anemic, just borderline to normal.
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Joyner. I continue to have SOB and increased heart rate upon exertion, especially stairs. Cardio is not as bad, that is why I can walk and slow jog. But sometimes the constant up and down, like laundry or cleaning floors will wind me. My MO can't explain as I am not severe anemic. She suspects scar tissue in my lung arterioles from tumor emboli syndrome (TES).
If you continue the SOB and it progresses, please seek medical attention. TES mimics pulmonary embolism (PE), but CANNOT be seen on xray or CT scan. I do not know about PET scans..never had one. I had your symptons, it progressed so badly, I could not breathe upon any exertion.. Check you O2 saturation upon exertion, if it drops quickly, that is a sign. Those little cancer buggers traveled from my liver to lung arterioles. Do you have a pulse oximeter? Keep us posted.
Worried about you.
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Celebrating in Memphis! PET/CT says I'm pretty much where I was at the last scan...so close to NEAD I can smell it! I still have the one little spot of soft tissue with minimal FDG uptake. There is a question as to whether it's cancer so I'm just going to assume it's not. Maybe it's just a little reminder not to get too cocky. I danced with a man in the waiting room in celebration of the two of us living beyond our expiration dates! (It's good that my husband was waiting in the car lest he die of embarrassment.) 20 Ibrance months! Six and a fourth metastatic years! 24 and a half BC years!
The truly wonderful part is that I took almost a 2 month break during the six months since the last scan and reduced the Ibrance dose to 75mg for the last 3 cycles. I'm telling you folks, one of these days we're going to just be dabbing Ibrance behind our ears and staying well! You think? Our "Julie" commercial will be like a perfume ad!
Anyway, as I've told you, I wanted to take another 2 month break this summer but my sweet Dr. Smith said that would sure make him worry. He asked me to consider trying 3 weeks on and 2 weeks off for a while, so that's our plan. I love that he doesn't act like I'm crazy for wanting to alter the trial protocol! He agrees that they're still learning how to manage Ibrance and may find lots of ways to tweak it. I'm also going to make an extra visit for the XGeva shot so I don't have to get it during my weeks off. I feel borderline crummy the two days after the shot so we're not going to let it interfere with the good time off!
That's my story and I'm sticking to it, friends! (I've met my quota of exclamation points for a Wednesday.) Thank you for your good wishes and your prayers. They are good medicine.
Love from PatG
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PatgMc: got a major laugh out of your post. Read it to my husband. Thanks for making our evening.
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CONGRATULATIONS PATgMC!!! I would love to have seen you dancing with that gentleman.
Joyner- how are you feeling today? Have you been able to talk to anyone about your shortness of breath? I got so frustrated yesterday when I was trying to sing with my preschoolers and kept getting out of breath. The pleural effusion is gone but my lungs are not a 100% yet. I hope that what you are experiencing is nothing.
when it comes to birthday I use to say it's just another day but from now on I will relish them for the gift they are.
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PatgMc, you said "I'm also going to make an extra visit for the XGeva shot so I don't have to get it during my weeks off. I feel borderline crummy the two days after the shot so we're not going to let it interfere with the good time off!"
Do you take loratadine (Claritin) around the shot? After my first shot (when I did feel rotten), I came on here for recommendations, and thereafter, I always took one loratadine two days before, the day of the Xgeva shot, and two days after - and never had an issue with feeling bad.
Don't know if it makes a difference, but I always had my shot on Day 15 of the Ibrance cycle.
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YAY PatG. Keep on sticking to your story and be sure to dance with strangers. You've got this girl.
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YAY, PAT!!!! (I will happily donate my full quota of exclamation points on this one in your honor)!!!! We're all beyond thrilled for you (and for us, as we need you among us)!!! YAY!!!
Endless thanks to you folks (I almost said "girls") for checking in on me and the shortness of breath. It's not debilitating exactly, and it is of short duration. If I stop for a moment and wait, I can press on thereafter. I go to the gym 5 mornings a week and knock out a mile on the treadmill at a good clip (not like the insane young people surrounding me whose machines are about to red-line any minute). I think that I'm okay and just suffering one of the lesser indignities of this treatment and of being 72. I surely intend to talk to my onc nurse when I go in next for Ibrance/Faslodex. Thank you!! (I saved a couple of exclamation points, Pat, for this specific use).
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Yahoo Pat! So nice to read your good report.
JoynerL, I'm sorry you have SOB. For months before my mbc diagnosis, I had severe SOB and other asthma symptoms. It got worse regardless of treatment and I ended up in ER thinking pneumonia. I wish it had been. Anyway, I hope your team will help you get it cleared up!
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Well I just downed my 1st ibrance pill. Waiting for the side effects to kick in now. Hope I don't get bald. Anyone get total hair loss from the Ibrance? I hate wigs.!!
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Neo, no side effects and no hair loss. I just passed two years on 75 mg.
This an email I just sent to the company that owns the PET/CT mobile machine that is used for my scans. Yesterday's scan turned out to a little more interesting than usual. I feel obligated to stick up for my fellow cancer patients. I can't help it.
Dear Ms. Myers,
My name is Janet Smith. I am a cancer patient at Memorial Medical Cancer Center in Las Cruces, NM. I have stage IV breast cancer. I get PET/CT scans about every four months. My first one was on March 21, 2016. I have a port that I kept after chemo for just this purpose. My veins are impossible to access, even by the best of practitioners. At my first PET/CT at your facility, I had a tech named John. He was reluctant to use my port, which had already been accessed at the cancer center. I strongly requested that he use my port and he did. All of my scans since then (Oct. 4, 2016, Jan. 18, 2017, May 17, 2017, Oct. 31, 2017, Feb. 7, 2018 and yesterday, June 6, 2018) have been done by a tech named Gene. He has always been happy to use my port. After my experience with John, I asked several of my doctors and nurses about using my port for the PET/CT. All said it was fine. When I went to the cancer center yesterday to have my port accessed, my nurse said I might have a problem with the tech agreeing to use my port. She had heard from patients that the tech was not allowing them use their port. One woman was stuck six times and was in tears. If there is no scientific reason for this opinion, cancer patients should not be subjected to the extra pain involved to access a vein. Some patients may not be as assertive as I am and be bullied into being stuck by someone who is either sadistic or wanting to practice his technique. I wanted to let you know that this was occurring at your facility. I have done a lot of research and have not found any evidence that using a vein is more accurate than using a port. (If you are worried about accuracy, you might want to look into the temperature of the room where PET/CT machine is used. When my test finished yesterday, it was 80 degrees. Maintenance was called several times and I think progress was being made but I know that is too hot.)
If there is evidence that using a port diminishes the accuracy of the scan, then all techs should adhere to that rule. If there is no evidence, then patients should not be subjected to whims of a single tech.
Thank you for your attention to this matter.
Best regards,
Janet Smith
Las Cruces, NM
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An excellent letter, Janet....but, wow, you shouldn't have been subjected to that sort of treatment OR to the heat in that room. I wonder if the heat could have had an impact on your scan, too? You're supposed to be calm and relaxed (good luck on that) rather than hot and stressed and overwrought. Inexcusable. Let us know what comes of the letter, please.
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