Ibrance (Palbociclib)
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Tanya let me know when you see this and I will delete as it offended Chico...
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thank you for saying that.
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Hi lakewoman,
You could PM it to her. Add her as a friend then you'll be able to send it to her only under the private message option.
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Just finished last pill of 4th cycle today. Received pills for 5th cycle today, I still am getting the capsules, haven't seen any literature on the pill change sent along with my new bottle so curious about these new tablets we are supposed to be getting in a couple months, anyone receive tablets yet? Still at 125mg, dealing with a few tongue sores this go around like I have a first and 2nd cycle. Gas was epic today, and thankfully it was just the air not the odor, well...I had to go to the DMV today and while sitting there I noticed the bottom of my shoe was caked in dog turd...wonderful....3 hrs sitting at the DMV, muffincutter going full bore and not a thing I can do about it, stinky shoe bottom wafting in the air...fun times...
Anyone else waiting for scans/results? Sondra? Divine?
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Yeah I'm waiting. Two+ weeks and no end in sight, but not too worried. Got my 4th round of pills ready to go and the box says capsules - think the changeover is for April . Im still on 100 and feeling good and adding an Omega 3 capsule in the mornings seems to really be helping the more general aches and pains. Passed out last night at 9pm after Hospital Day - the Xgeva and Zoladex injections tend to give me a few hours of 'wobbly legs' where I feel like they aren't going to hold me up, but that seems to pass within about 12 hours.
Ah the DMV - when we have to renew our US licenses we go to the small one in my small hometown where there is no line and the people are well, they are really trusting
I showed them a year old bank statement sent to my parents house as evidence that we were 'residents' and they still issued me a new license even though I was turning in an expired out of state license.0 -
Miss Rabbit...you make me laugh out loud! My muffins have the odor sometimes unfortunately. 😂
I'm having mouth sore issues again this time too. It's weird because it's not every month.
Sondra...wishing you the best results!
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On mouth sores - In the first 2 cycles, I had a short-lived one in the off week. Baking soda/salt rinse worked well. In cycle 3, they started in week 2 and lasted over 11 days (so far). A frequent weak hydrogen peroxide rinse has really helped. They had gotten pretty painful, but almost gone now. I was close to begging my MO for a lower dose.
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Hello Ibrance Dancers! Just wanted to come back with an update for those thinking about side-stepping to Verzenio after progression... It is worth trying (at least it has been in my case)
I saw mm of growth mixed with stability while on Ibrance over the course of two years. Switched to Verzenio Nov 1, 2019 and within 40 days my CT showed visible regression in the lung nodules and mediastinal lymph node cluster. I was elated! My MO was very surprised as she was really just humouring me with trying this out to begin with!
I just posted in the Abema/Verzenio group with more details on my experience for anyone interested in how tolerable it has been. Of course there is a BUT... Now after 4 months on Verzenio/Faslodex I have scanned again and had a mix bag once again but not switching. The lung spots remain stable while the lymph nodes have grown mm (I even wonder if it’s necrosis? - Not reported that way but MO was not too worried) When this fails I will maybe try to exhaust the CDK4/6s and move to Ribociclib. We shall see. As mentioned in the other thread, I feel hopeful knowing that my CA15-3 has never gone over 40... And it will be 3 years since my MBC diagnosis this July. I just got back from Hawaii and living fairly well overall. I don’t hop onto the boards much these days but wanted to just share this in hopes that it might give the newly diagnosed some hope. Life is still very fulfilling in between all the cancer crap!
Wishing everyone continued success on Ibrance and hopeful Verzenio can provide longer stability should you need it down the road!Ash
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Ashlyn -- Congrats on the positive results! Thanks so much for cross-posting them here because it gives some hope for those here when it's time for them to move on from Ibrance.
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Thanks Ashlyn, that is encouraging !
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Ashlyn I'm glad to hear Abemaciclib has been working for you! Were you also on Faslodex while taking Ibrance?
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Roseo: yes I was on Faslodex with Ibrance for a year prior to switching to Verzenio. And Ibrance/Femara before that. I also had an ESR1 mutation in 1-2% of cells from the last biopsy which was nearly 1.5 years ago.
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on my 6th day of ibrance 125mg capsules. Capsules do not feel full. Can you tell me are yours full? I called Pfizer and mo one knows the answer. I have no side effects. I hope you can help. Thank you
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Shraylene,
Are you near the pharmacy that you got these from? Or, for that matter, any pharmacy? Perhaps the pharmacist can take a look and tell you what he/she thinks?
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Okay, Ibrance dancers -- freaking out here. Just had a good CT showing stability. Headed up to Hopkins this Thursday for an MRI of my abdomen to take a look at my liver in better detail, and to meet with the interventional radiologist. But my tumor markers just released on the patient portal from this past week's blood pull, and they've gone up again. This is the third straight month that both CA 27-29 and CEA have gone up. The last two months I had an explanation -- I had a stomach virus and an upper respiratory thing right when my blood was being pulled or just before. But this week, I actually felt pretty good when I saw the doc, and told her so. Markers tend to be accurate for me -- from May 2018 to May 2019, they kept going up but we couldn't find anything until May 2019.
Pardon my French, but crap.
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BevJen, The mental aspect we deal with is crap for sure. My MO doesn’t do tumor markers on me but the anxiety of rising markers has to be a huge gut punch, with no clear explanation . I’m sorry you’re dealing with this. I’m hoping this time the markers aren’t accurate and the mri shows nothing to worry about.
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BevJen- I hope it turns out nothing. I had a slow, steady increase in TM's (CA 15.3 and CA 27.29) over 4 months. And when we did CT it showed slight progression of my liver met. But then PET was all clear. We do ride the roller coaster of emotions. And the tests are confusing. My MO said my TM's are not accurate for me since the PET was clear. Who knows. Something brewing that PET isn't picking up on ?????
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Candy,
Thanks for your note. I just had a CT and it showed sclerotic bone mets and two liver tumors -- one that had been ablated and wasn't doing anything, and another that has been shrinking. That's why I was floored with this. We'll see what the liver MRI shows this coming week. My oncologist told me last week that my insurance won't cover a PET and that's why she goes with CTs. My insurance is Medicare, along with a supplemental policy from United Healthcare. I think they just don't want to go to the trouble of arguing with any insurance company (or the federal government in this case), and so they take the path of least resistance.
If the MRI shows zippo, I may press again for a PET so we can at least see if anything is active on the PET. Thanks for reminding me about PET scans.
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BevJen- I get CT's every 3 months for monitoring. I had 1 PET at diagnosis as baseline. We asked for a PET at the 1 year anniversary to see what it would show after 1 year of treatment. Insurance denied. When the CT showed slight progression of liver met (mm growth) the insurance agreed to a PET. I guess my MO takes the PET report as the final say because when it showed no uptake she said all was ok. The CT progression and rising TM's were then ok with her--the PET was gospel. I just hope the PET didn't miss anything. And that the CT growth and rising TM's are not showing something is amiss.
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BevJen, I have Medicare and it pays for Pet scans. Fact checking what a doctor says is not a new activity for me. I know Medicare is different in different states but it might be worth checking.
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Thanks for the AST clarification Ciaci!
I’ve wondered previously whether we in Scotland are in the dark ages as many of the tests you folk talk about re tumour markers, genes ( except BRCA) and other stuff are just not done here. I’m def way behind on treatment plans too as you all seem to know far more than I do...info I’m very grateful for!
On the other hand, I’m NED on I/L with CT scans every 5 months or so and the only thing my Team worry about are SEs and symptoms, not tests and markers. I get a lot of shrugging of shoulders and ‘ well let’s just see how we go’.....’ you’re doing just fine’... ‘go and enjoy the things you can and want to do’.... and frankly that suits me!
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I had a PET scan, which I paid for out of pocket in February of 2019. My story is a long one with scares of another type of cancer before being diagnosed with breast cancer. They saw nothing on the scan. Ended up having two endoscopies, one in March and one in May of 2019. Breast cancer found in two places in my stomach. Why didn’t it show up on the PET? I don’t know. I do have a new area that’s questionable in my omentum. My 27-29 went up last month. I go Monday and have tumor markers again. I’m hoping they’ve settled down this month. I’m on Ibrance and Letrozole and not doing too badly, so I’d like to continue.
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Dear KBL,
So sorry for what's going on with you. Weird that your BC didn't show up on the PET, but at one point in my journey, I did have a long conversation with a breast surgeon who said -- well, it shows up if it's PET-avid. I've done some reading on that, but not sure that I fully understand it. As for locations, you know, I'm sure, that ILC is very sneaky and that it likes to go to places like the abdomen and elsewhere.
Good luck on Monday. Hope those TMs settle down.
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Dear Karen,
Sometimes I wish that we had a more simplified system here of assessing progression or not. You know how we always talk about scanxiety on the boards? Well, it's the same thing for tumor markers, and I think that most of us here have our blood pulled every month. So every month I sit and wait for my TMs to show up on my patient portal, and guess what they will be like. It's a little bit of hell each and every month. And then when the scans and the TMs don't agree, well, then there's more anxiety.
This cancer stuff is just no fun at all.
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I've been wondering about progression in my future since I've now been diagnosed with two different breast cancers . One is HR+ and the other is HER2+. I'm on Ibrance for one and Herceptin and Perjeta for the other. If my tumor markers rise, I wonder which cancer will be to blame. Don't know if anyone else is in this situation.
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BevJen, thank you so much. I appreciate that.
To make a long story as short as I can, I had two MRIs back in 2013 and 2016 for a car accident in 2013. After the first one, out of the blue, the report came back with multiple lesions in my spine. They thought I had multiple myeloma. I did every kind of test imaginable, including a bone marrow biopsy in 2016. I did not have multiple myeloma. Then symptoms started in 2019. That’s when they found the breast cancer in my stomach. Still have no idea what is in my spine. It’s never shown on PET or bone scan and, for that matter, on the two CTs I’ve had. I also had breast MRI. Nothing is showing there either. The CT is not showing anything in my stomach, only biopsy. It’s just weird all the way around.
I do have ILC. It is very sneaky.
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I've been NEAD since January of 2018, and get blood drawn every six months, alternating with my PET scans (scans in January and July, blood work in April and October). My husband gets nervous that they're not checking blood work more frequently, but I'm okay with it. The lowest my ANC has ever been was 1.3, so my oncologist isn't concerned.
Anyone else on that type of schedule?
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Karen- Sorry Scotland doesn't seem to have the testing we do in the States. But as the others have said, the scans and blood tests can be misleading and confusing. And we have to fight with the insurance companies to get the scans approved. Not a wonderful system either. I wish we had more of a protocol for monitoring and treating MBC and the insurance companies would give us the leeway to do the testing the docs order. No use having the technology to do the tests if the patients cannot have the tests.
KBL- My biopsy showed "Lobular features". ???? My breast surgeon also called it Lobular breast cancer. So I count myself as ILC/IDC. I worry that with the "Lobular features" that mine may be sneaky too. And I am leery of the test results sometimes. I have never had an endoscopy--no need. So I worry that it may spread to the GI system and I won't know until late. I guess I cannot have "routine" endoscopies to monitor for progression. Hope your TM's on Monday are stable.
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Candy-678, Thank you. I’ll keep you posted on TMs. I can tell you my symptoms, which is why we did the endoscopies. I would eat three bites of food and feel stuffed. I kept telling my husband I couldn’t eat anymore. He would say, “Keep eating.” I couldn’t. I also lost weight like a rock. I went from 134 down to 115 in a matter of months. I didn’t have any feelings of gastritis. When the doctor did the endoscopy, he said he didn’t see anything other than some gastritis, but he took five different areas for biopsy. He was just as surprised it came back cancer. They wanted to get more samples, so he did 12 more samples. That’s when they said it was in two places. I plan on having another one this year. I’m starting to have more gastritis symptoms. I am able to eat more, but I can feel the food sitting up right under my breast bone and not moving very quickly. That’s one test I don’t have to have approval from the insurance company to have “yet.” I started with the symptoms in October 2018 and didn’t find out I had it until May 2019. I do think the Ibrance and Letrozole are helping. I am stable with my weight right now and am able to eat more, so I’m trying to listen to my body to tell me if it’s different. I just need to see if the new spot they may see in my omentum is more. They aren’t sure yet. Oh, and I also had anemia with the weight loss back in October. That has stayed exactly the same during this whole time. I have no idea what it’s from. It’s not lack of iron. I’m very grateful my primary pushed me to have the endoscopy
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RadagasRabbit - thank you for the laugh and reminder to check shoes. I am due for the DMV soon to get the "Star" driver license.
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