Ibrance (Palbociclib)
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Shetland, I'm wishing you will get all the answers you need for this current stressful event and that a scan will show you results that will ease your mind. I have to say that 17 points could easily be just a little inflammation for whatever reason. Mine have risen by as much as 150 before with a good scan then corrected later. I think it may have been Rosevalley that has had TM numbers over a thousand....And never ever beat yourself up over not being vigilant on diet or exercise (or whatever). None of us is perfect on any front and the last thing we need is guilt. It is impossible to control all the possible elements in our lives.
With that said, I too am a person who has always needed to be in control, so this whole ride I will admit is making me a bit of a basket case. The least control I have ever had in my life for the most serious event and not much I can do to change it. I am trying to find acceptance of what will be will be. But I sometimes doubt if I will ever get there....
Deanna, I am going to take your advice and recommit to more exercise. I've been a slug now that I a back to work behind my desk. Been feeling stiff and slow and know how badly I need to just move.
Claire, I hope the met gets resolved without the rads, but if not I hope it goes easy, zaps that sucker and leaves no crummy SE's. Ringo and his All Stars sounded like a fun concert! I considered going to see them in Reno. Nothing better the front row at a concert. Great picture!
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Since there are now clinical trials testing Ibrance for early-stage breast cancer, I have created a thread that is meant to be a place to discuss and share about Ibrance for patients of any stage. Because this original Ibrance 2015 thread is on the Stage IV Only forum, I thought this might be a good idea so that anyone participating in a trial of Ibrance for earlier stage bc can feel comfortable posting. And those of us who have been on it a while can contribute there to discussions of side effects, etc. So much of this original Ibrance thread is devoted to Stage IV issues.
In the Hormonal Therapy forum (the best fit I could come up with):
"Ibrance -- All Stages"
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Thank you, Faith, airlinegal, and Artist. Since my last three scans have been ambiguous, it is hard to know what to think. After the second one of these my onc said, "This scan was supposed to tell us everything." The steady upward TM trend is concerning. But at least nothing big and dramatic has happened.
Lalalady, I'm so glad you got to go to the concert and had such good seats. Take that, stupid cancer!
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MODERATORS:
Is it possible for you to correct the misspelling of Palbociclib in the title of this thread, to ensure that it comes up in searches?
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Yes, the spelling should be corrected so people can find the thread. Also, perhaps we should add "2016" so people know it is a current thread and not an old, inactive one. Like this: Ibrance 2015, 2016 (Palbociclib)
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or no date.
>Z<
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Tonight I take a last anastrozole. Yea, I suppose, too bad it did not work. Off to Ibrance/Faslodex. We shall see what's next. I am glad I am not in control. I go to God with all this overwhelming load and leave it in His hands.
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For those of you on the Faslodex/Ibrance combo, have any of you experienced red, very itchy spots at your Faslodex injection sites? If so what were you able to do to stop the insane itching? Month before last I had this reaction on a minimal level for a couple days, but last month it lasted for 6 days. I tried topical cortisone cream, but to no avail. Will be discussing this with MO on Thursday, but wanted to check with you ladies too.
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Roosarider, so sorry to hear the anastrozole did not work. I am hoping the Ibrance/Faslodex is the drugs that will knock you into NED. All the best and with God's guidance I am hopeful that NED is on its way to you.0
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Regarding the name of this thread, Z, I was thinking we should leave the title with its original and recognizable name as much as possible, which is why I thought maybe leave the 2015 and just add 2016.
Roosarider, there is a thread about Faslodex called "Faslodex Girls Thread 2014". At the top it has tips on getting the injections. There is also a thread called "Faslodex + Pablociclib [sic] (Ibrance) treatment combination". Just in case you are interested in adding them to your favorites along with this one. I suppose you already know about them, Jazzy?
https://community.breastcancer.org/forum/8/topics/...
https://community.breastcancer.org/forum/8/topics/...
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Shetland - No, I didn't. Thanks!
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Thanks for the heads up Shetlandponi, I will take a look and see! It is good to read others experiences of the same journey.
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Oh, how fun, LALady1!!! Ringo is such a sweet baby! We're going to see Ron Howard's Beatles doc this Saturday followed by dinner at an English Pub, can't wait. Can't buy me love, but you can buy me dinner!
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BTW, what is NED?
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So I was wondering if you ladies are continuing to have mammograms. With BC Mets, I just don't know if it is necessary. I will be having a pet ct in a couple of weeks and it seems to me that if I were to have cancer in my breast now along with my lung and bones the new breast cancer would show up in that test. Your thought please.0
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Roosarider, NED stands for No Evidence of Disease.
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I just found out that with this latest rise in TMs, my doctor has finally switched into something is (might be?) going on and we have to try to find it mode. ILC can be hard to detect, and my recent PET/CTs are not helping us. So I have orders for CT with contrast, bone scan, and breast MRI. Waiting on insurance and schedulers, which means I get to make lots of phone calls to keep things moving. Of course this happens with a big dance performance coming up. I don't have time for this. Of course I am thankful that I have access to these tests. But grrr.
Roosarider, NED is our favorite guy, but he has a reputation for being fickle. We like his friend the Stable Boy, too. (NED=No Evidence of Disease)
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Hi Shetland,
Glad investigations have started for you.
You haven't mentioned any change in symptoms that I remember, often that's the telling factor in ILC.
I have IDC, but have several ILC friends and am part of the peritoneal carcinomatosis community here where most of the members have belly mets and all of us have a variety of symptoms...in spite of ILC not always showing up on scans.
If you have belly troubles, bookmark this and come see us...otherwise, you probably don't want to know - except to met some amazing folks.
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cherylking, no mammos for me (per both UCLA and my local onc). The idea is that once our bc has metastasized beyond our breasts and lymph nodes, it doesn't make any difference what's going on in our breast(s); CTs or PETs will divulge anything in the chest area; and hopefully whatever meds we're on for bones or other mets will also attack anything new or remaining in the breast(s). Some situations may call for a different approach, but no need for mammos probably applies to most of us.
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Stephanie, I did visit that thread once, and will admit I have been afraid to return. No dramatic symptoms, but I will go post.
Amazingly, I have received word that my CT with contrast, bone scan, and breast MRI are all scheduled. So I am spared further scheduling aggravation, except for rescheduling another appointment that got bumped.
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Thanks you Cherylking2 for the nice kudos encouragement. And I wish you the same!
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roosarider - NED means cancer is not showing up in scans. It doesn't mean cancer is gone, especially if you have ILC which is difficult to seen in scans. NEAD is no evidence of ACTIVE disease. This means that you still have tumors but none of them light up in PET scan so they are dormant.
Shetland - I just visited my complementary doc. She wants me doing all kinds of things. I have no time for this. I am glad you are getting all the scan. I think they are very important. But so annoying.
>Z<
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I know, right? If we add up the time required for all the things we should be doing, it's at least a part-time job if not a full-time one.
I'd have to say that ILC sometimes shows on scans and sometimes doesn't, and sometimes shows only to the well-trained eye.
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Dlb823, that is what I thought too but while at my two week check in at UCLA for lab work my oncologist's NP said I should still get a mammogram. I think I will just wait until after the pet ct with contrast and then revisit the issue with my oncologist.0
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lalady, how wa your appointmenttoday with the radiation oncologist for your jaw met?
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I don't think u need a mammogram on the affected breast and the other, my onc. Said anything will show up in the pet scan.. Any news on ibrance will be welcomed, I still have fatigue but nothing else. Hope this med
Helps us ladies with MBC brixton
P
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please don't use my name. Thx. Brixton do not want my name on these replies.
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Jessica, it is good that your only SE is fatigue. Have you blood counts been dropping during treatment cycles? If so, have they been rebounding quickly? How long have you been taking Ibrance? Are you taking any other medications? Faslodex or letrozole? If you fill in your diagnosis and treatment fields and make them public, we will learn more about your disease and history.
Lynne
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hi all,
took a break from BCO & I see that I've missed alot in the past few weeks. It's particularly hard for me to come to this thread & see Hope's lovely face, her passing hit me hard & I'm reminded of everyone we've lost.
I was on 125 mg, but my counts fell too far, so now on 100mg. But had my 1/2 cycle labs done today & they are pretty low, not sure if they will keep me on it or whether I'll go to 75mg. Otherwise I feel ok, though I find I don't have the stamina for yard work etc that I had not long ago.
so hello to all the new faces here & hugs to all, cheers, dee
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Hi Cheryl - agree that mammograms are a thing of the past once we are Stage 4. Saves some headaches lol I have no breast cancer in either breast, but have that pesky jaw met. Met with new IR Dr at Hoag who has treated one lady before. Her jaw got better with rads. Plan is to start 15 rounds (days) of rads after I return from my Germany cruise in December. The met appears to be slow growing, hence the ok to wait. Plus he mentioned likely inside of cheek blistering and sunburn to half my face - ouch. Did not seem to go overboard on the nightly flouride trays for the rest of my life, but... Meanwhile I am on round #11 doing ok - and start round #12 in two weeks. GG27 rooting for you! Hi Steph! Shetland I danced for 2 hours to Ringo - stay positive and get ready for your big event. (())
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