Ibrance (Palbociclib)
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Well, folks, I had a blood pull on Tuesday. Regular bloodwork was perfect. BUT.....my tumor markers just posted on my patient portal. They are up -- both my CA 27-29 and my CEA. This is the third month in a row, despite the fact that nothing showed up last month on my two scans -- a CT and a liver MRI. I am beyond scared. Tumor markers are very accurate for me, it seems. So something is definitely going on in my body. I'm not at my highest yet which was before I started Ibrance/faslodex, but if they jump again, I will be.
Sent a note to my MO asking when we switch meds or what we do now. Also asked about adding Celebrex, because Cure-ious often talks about this.
Not what I need given the whole coronavirus mess. Am feeling like I have a target on my back, one way or the other.
Prayers and good thoughts welcome.
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BevJen- Good thoughts coming your way from Illinois.
My TM's slowly, steadily rose over 4 months last fall. Got to highest point ever, even at diagnosis. CT showed slight increase of liver met, but PET did not show uptake. My MO was concerned until she got the PET results and then she abruptly said my TM's are not accurate for me. That the PET was gospel and no uptake, so no progression. I don't understand all this. All I can say is I hope the numbers do not reflect progression for you. Talk with your MO.
Hugs.
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BevJen, Sending positive thoughts that the markers are not accurate. The mental part of wondering what’s going on is the worst. I would try to focus on your recent good scan but I know that’s easier said than done. I hope your MO gets back to you pretty quick. 🌺
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Thank you all for the comments about getting bloodwork done. I went when the lab opened at 8 am this morning. No one else was there. Signed the papers with my own pen. The clerk had her window closed, usually it’s opened. The phlebotomist wore a mask and of course used gloves. She said any time I go anywhere out, I should wear gloves and a mask. (Aside from the blood lab, I am not sure when the last time was I went out). I was in and out of the lab in 10 minutes.
BevJen, wow, you’ve been at this a long time. I know it’s unsettling during the pandemic to see your tumor marker numbers jump. I can also understand feeling like you have a target on your back. I’ve felt that at times, too. The pandemic on top of all we go through is one more challenge along the way with this disease. We can only take this one day at a time. Please take care. Thinking of you.
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Divine,
Thanks for your note. You're right about the combo of the pandemic and this -- I just feel like a darn sitting duck right now!!!!
I have been at this a long time, but for me, it's been a chronic disease from 2006, when I had a single site metastasis to my cervix, until May 2019, when they found lesions on my liver. For most of those 13 years (well, really 12 because my tumor markers started going up a year earlier than the lesions were found) I barely thought about breast cancer. I just popped my little letrozole pill and went on with my life. But now, obviously, things are more front and center, and it's not a happy place. I don't expect to live forever, but I also was hoping that since my disease was so indolent for so long, once I got on different treatment, that would continue again. Not sure that that's going to happen, though, so it's a gut punch for sure.
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BevJen, you and I are in the same boat. TMs are back from blood draw last Friday, checked my portal and they are up again. Like you my recent scans in February didn't match TMs. I don't know what this means and like you I'm pretty unnerved.
I think what I'm trying to do, and not easily, is try to qwell the storm of uncertainty within me by looking to the next scan and see what that says. My MO had told me when my TMs went up the first time treatment plan wouldn't change based on TMs but on how I felt and scans. You and I can do si do together for a bit until scans again which will be most likely May for me. This virus garbage going on with concerns of progression sucks. Holding your hand, let us know what MO says.
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Dear Radagast.
I'm pretty sure my MO will say the same thing -- when my TMs started rising in May of 2018, neither my regular (at the time) MO nor my consulting MO (who is now my MO) would act on anything but scans. So I doubt she will do anything right now, especially since I had two good scans back to back in March.
I will try and follow your lead on this and stay as calm as I can be. But damn, it's really hard, isn't it?
Big sigh.
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Bev-Jen, My TMs have definitely been one of the only ways I know things are working. Mine were up two months ago in one, down in the other, and then last month were up and down in the opposite one. So confusing.
Candy, if that were the case and the PET was gospel, I wouldn’t have cancer at all. I have had two PET scans, one in May of 2019 and one last week because the CT is showing something on my omentum. Neither one lit up, including the cancer that was found in my stomach from two separate biopsies. I don’t trust scans as far as I can throw them. Not everyone lights up on imaging. I would push back if my doctor said that. Not one scan in a year had shown anything until the one in February of this year, and I don’t even know what that is because it’s measuring .5x1.4 cm, what they consider small.
Hugs to all
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BevHen..also same boat as you. Ca 15.3 slowly trending upward. But labs, CT, PETCT, ultrasound show nothing. The liver MRI which is suppose to be the gold standard for IDC liver mets, maybe showed something. That was in Jan, so repeating the liver MRI next week..April.
I feel fine..so just trying to enjoy each day. My MO will not change tx unless scan verifies growth. Then if tumor is present, she plans to rebiopsy, check hormonal status and send for F1.
I already know my next tx is faslodex..hoping to stay on Ibrance..but my MO leaning towards Verzenio. Wants to hit it with new stuff. But in the meantime, I just pretend I am normal.
S
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Sandi,
It's a TM epidemic! Sounds like it's happening to a lot of us at the same time. In my warped mind, I'm thinking -- maybe I have a mild case of Covid 19 and this is a reflection of it in my TMs. Or maybe I already had it, and it's lingering. I know -- crazy thoughts.
My MO wrote back and told me that she wants to wait another month, since my MRI on March 5th showed zippo new. All looked stable. I also have some bone mets, but the docs can't seem to figure out what's arthritis and what's cancer, and what's sclerotic and what's now. I was supposed to have a nuclear bone scan this past Tuesday to maybe answer some of that, but I canceled it because I didn't want to hang around the hospital after the injection and before the test. I just wrote her back and asked her if she would add Celebrex to my drugs. Let's see what she has to say. We know if have the P13K mutation, or whatever it's called, and Celebrex is supposed to be a inhibitor of that, if I understand it correctly. So hoping that she will agree and we'll have a little science experiment at the same time and see if it works.
Good luck with your situation, and hope the next scan goes well.
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KBL- So what scans do we trust???!!!! I have CT's routinely every 3 months. Only 2 PET's -- first one at diagnosis and then the one last fall (due to progression question on CT). So should we consider the CT's as gospel for me? My MO did move TM's to every other month instead of monthly after the fall PET. The markers were going up, but the PET was clear so she said markers unreliable for me.
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Airlinegal and Karen, great news!
BevJen, DivineMrsM, RRabbit and any of you with tumor markers on the rise, sending you support, sincere prayers and energy that these go back down.
RRabbit and Intothelight - I enjoyed the dietcoke comment, must be my twisted sense of humor and the reality that we can do so much and appear "normal" despite our cancer dx.
I received a call and follow up email from my County Public Health that I was exposed to COVID19 last Friday 3/20 by a client. I was using precautions such as gloves, hand sanitizer and 6 foot distance while showing a vacant home for sale. I am to self quarantine for another week. (14 days total) and so far feel fine. As of 2 days ago we are no longer allowed to show property or do any in person meetings and I am thankful for this as it means clients are all understanding we need to just stay home and stay safe. My cancer center is not overly concerned about my exposure but does have drive through testing if I feel like I have symptoms. I am hopeful that it won't come to that.
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Aprilgirl, scary exposure but it sounds like you handled it all well. I am glad the CPH was on top of things and called you.
Rising TMs are scary and can be confusing. Praying for all of you right now that they are only flares as the Ibrance keeps working.
I emailed my onc this morning because I have caught another cold that has been working its way through my family (it does not have symptoms of COVID). I received an immediate reply that she will be out of the office until after April 7th. I hope she doesn't have COVID but perhaps she is in quarantine. The hospital where she works is very busy. I need labs and pills next week and usually have them done at the same hospital but perhaps it would be prudent for me to use another lab and pharmacy this time. I can easily do this within the network.
Stay safe everyone.
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very early analyses involving small numbers (12-20) of COVID patients are indicating that neither hydroxychloroquine nor the Gilead drug resmedesevir appear to have the hoped-for antiviral activity in a hospital setting, much bigger trial data will be forthcoming but this doesn't look good for having something to treat patients with in the short term, before vaccines
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Thanks for the good wishes everyone.
BevJen - think I said before we don’t use TMs here, or they don’t tell us or report on them. Treatments are based on scans and symptoms and the nurses do carefully listen when talking through SEs etc. Hard to get the balance right, but the anxiety must be crushing...bad enough waiting on scans. I wonder, once you get this latest batch hopefully sorted out, if it would be worth your team keeping the TMs under wraps unless they were concerned, with your consent? That’s a huge trust thing though.
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Cross posting--
So I got a call from MO office today. I have MO appt Tuesday. They asked if I wanted telemedicine appt---audio call since I don't have video capabilities. I said Yes, but I am due for monthly blood work, off week Ibrance. They said they will discuss with MO and call me Monday to tell me whether I need to physically come in. I am ok with skipping the labs, taking Ibrance as scheduled, and doing audio call from MO. We will see.
Cure-ious- Well darn. Hoping this would be found helpful till vaccine ready.
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Cure-ious, may I ask where you saw that info about a study? I thought NY was to be the first to study the hydroxychloroquine here, and they just received their doses this week.
Thanks!
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Candy-That’s a good question. I’m sure scans work for a lot of people. I wish they worked for me. Back in 2013 and again in 2016 I had MRIs of my back from a car accident. I was told that I had lesions all up and down my spine, and they thought I had multiple myeloma. I had every test known to man and a bone marrow biopsy in 2016. Everything was negative. Talk about a scare, not once buttwice.
Then in 2019 I started to lose a lot of weight and couldn’t eat more than a few bites, have had anemia since. Biopsy done, and bam, breast cancer in my stomach de novo. I will never know if what they saw in scans had anything to do with what’s going on now. I had bone scans and PET scans back then, and they showed nothing. It’s just so odd. I’ve been told lobular is very sneaky, and it’s what I have.
I don’t know what to trust anymore, so I trust how I’m feeling to let me know if I have issues. It’s all I’ve got. I have to say this finding in the current CT scan is the first time they’ve said their might be something there, but it didn’t light up on the PET scan. Radiologist said it’s hazy. All I can do is wait until the next scan.
I hope you can find out what’s going on. It seems we’re in a similar boat, having to wait and watch. I feel decent, so I’m okay with waiting. I’m hoping feeling decent lasts a long time.
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Dear Karen,
Good thought on keeping the TMs under wraps. Unfortunately, I think it's pretty standard here to do TMs of some sort if you are metastatic (at least that's been my experience in a big metropolitan area and with a teaching hospital.) The kicker with that is if you have a patient portal, you see it all -- including the TM results. So I don't think they would keep it under wraps.
I guess on the plus side, generally I don't have to wait long for results from anything. The longest I ever have to wait is a week, because if the doc hasn't released results, within a week they will pop up on the patient portal. With scans, I can always go to the imaging center the day after and get a copy of the radiologist report. So with the bad, comes the good, I guess.
I find it so interesting that in other countries, like yours, they either don't do TMs or else they don't tell you. It would seem that treatment of MBC across the world should be somewhat the same.
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What is the difference between tumor markers CA 27-29 and CEA? Sometimes I have one done and next time the other. I had my 1st scan last week since starting treatment; my MO said improvement was noted. I had lab work done this week and had the Faslodex shots and the Xgeva shot. The clinic was really deserted, chairs were piled on top of the benches and sealed with plastic. Only patients are allowed in the building. I started my 4th cycle of Ibrance this week. Is the 75 mg dose as effective as the 125? I worry that I'm not getting full-strength treatment and therefore will not get full benefit. I cannot figure out how to do paragraphs or anything on this reply section; makes for a hard to read mess. Sorry. I am so frustrated I would like nothing better than a nice cold beer and a cigarette!
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I got a call today that my cancer center was going to start teleconferencing appointments. My bloodwork will be done at a local lab. They will be calling me to walk me through installing the app for my next appointment.
BevJen, will they switch your treatment plan just based on your TMs?
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Lee - Not to worry, a lot of us have gone down from 125 because it wasn't tolerable at that dose. They put me down to 100 and I feel so much better on that than I ever did on 125 (I was close to staying on 125 too) and am improving. Karen upthread has been on 75 for a while (with an extra week off!) and shes NEAD (?). You are still getting the same benefit from the drug, but at a level your body can tolerate.
Bev - the NHS is great but due to costs they just cant support everyone the same way as the American model. Its the usual pick two: cheap, fast, or good. Its cheap, but when its fast its not necessarily good, or when its been good it hasnt really been all that fast! There is also a cultural difference where in the US there is an expectation that its a partner relationship and most MOs see it that way, while here there is still a view in some areas that the doctor/professor knows all and is not to be challenged/deferred to. Ive really been struggling with that gap for sure!
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The latest study to be reported on chloroquine that gave poor results came out of China, and was anything but scientific in so far as evaluating chloroquine.. Both arms of the trial faired similarly, and fairly well, so chloroquine showed no advantage. But both arms of the trial received varying advanced treatments, like interferon and advanced anti viral drugs. It was also an extremely small trial. The results are anything but conclusive. Some analysts say its pretty hard for chloroquine to show an advantage when both groups were already receiving advanced antiviral treatment, and the amount of treatment may have reached a ceiling, so to speak.
I would hold on for the results of upcoming studies that put chloroquine head to head with other treatments and also no treatment. They should have results in less than two weeks.
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FYI , as we are all immune suppressed , this is an interesting read about the spread of Covid-19.
keep you and your loved ones safe.
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I’m hanging with all those that have rising TM😞. Definitely not good timing. 2months of slight increase followed by a stable month and then another slight increase. My MO said to continue with ibrance and let’s see what next month does. We will order scans if they continue to rise. I’m scheduled for lab the fist week of April. I completely understand the unnerving feeling. Thankfully, I feel fine but, the thought of changing treatments stirs up all kinds of emotions in me. I’ve read about other treatment options and am grateful for that if progression is in progress. I’m also grateful to have this discussion and not to feel alone in this disease....Likely, I can’t have this conversation with anyone around me. Sending prayers and positive thought that ibrance continues to work for all of us
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Praying for all those with TM's rising. I feel for all of you.
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Well said Sondra! I think the relationships and trust built with your team go a long way to supporting us. I do question my team and cross reference what one says with what another says...it’s true that they don’t always agree but I do think they’re being honest and caring and so far with me they’ve got all the big stuff right. It helps also that my MO is the lead clinician for West of Scotland, does not miss when she wants something done but is also a human being!
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So I had appt for check in with MO tomorrow and blood work (off week of Ibrance). Got call that they are holding off on labs and will do appt by telehealth. The thing is I have a PC but not a camera or microphone. So we are having to do old fashioned phone call for appt. I tried to order a webcam online-- either out of stock or would take 3 weeks to be delivered. Local electronics store is out of stock too. I need to get in the 21st century.
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Candy --
Do you have a phone that allows transmission via picture and sound? I'm guessing that they want to push for a video conference because most insurers are paying for that right now (whereas they used to not pay for it -- even Medicare is covering it, I think). Otherwise, I'm sure it's fine that you check in over phone. I didn't even see my MO this month -- just got the bloodwork and the faslodex shots.
Hang in there.
Bev
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BevJen- I do not have a Smart Phone. Basic cell phone with talk and text. PC desktop but no microphone or camera. I will be buying a cheap model webcam when I can get one--all out of stock.
Does anyone else out there feel they have to keep track of things on their own??? I mean, I keep track of week off Ibrance and when labs due, when Xgeva due (every 3 months), when scans due. My MO told nurse that I could do labs in a couple of weeks when I go into the office for injections. NNNNooooo. That would be DURING my Ibrance cycle. I just feel my MO should know that.
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