Ibrance (Palbociclib)
Comments
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So happy for everyone’s good news. Keep the good news coming.
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Hello everyone! So, I had my 9 month scans last Monday and then got my results last Wednesday. Amazingly they noted almost complete regression of activity in all of my lesions. Still some activity in my left femoral head but less than the last scan. No activity in my skull lesions. And weirdly, some activity in one of my tonsils. My MO doesn’t think that is anything. So yay! We’re staying the course on 125mg Ibrance even though I’m typically on a 3 week in and 2 week off schedule. We’re also changing my antidepressant to one that also helps with my joint pain, which has been not good lately. He thinks some of my other symptoms/side effects/whatever may be thyroid related. So I may have to adjust my Synthroid dosage.
Lots of good news…. So why am I a wreck this week? I have been super emotional, in tears several days with no explanation. I feel super overwhelmed at work. I am forgetting things and losing items, which I’ve never done before. I just can’t seem to get my shit together. Has this happened to anyone else? Especially after good news?
Speaking of, congrats to everyone on your recent scans and news. I’m so glad y’all are doing well! And for those who are having a tough time, I’m here with you! I hope we can all make it out
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hi all. Rejoining this dance after 5 months off for mastectomy, recovery, 7 weeks radiation, recovery. Just in time for 1/2 my 11's class to test positive again 🤨. So happy to see so many great scan results!
🕺🕺🕺
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Dancemom - happy you are recovered from surgery, radiation and all of that! So sorry about the Covid cases in your class
Sometimes if seems like Covid won't end. KatyBlu - congratulations on great scan results! I think I have been there with the emotional falling apart after scans - even though scan results were good! It is such an emotional time anticipating the scan, having the scan, waiting for results. I often feel like I am moving in slow motion and just on autopilot until I get the results. The results have been good but the emotional build up and suspended reality while waiting catches up to us. It has become a little better for me now that I am 2.5 years in to this but I still have serious scanxiety. Hang in there.
It is great that we have had so many good news posts lately, keep them coming!
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KatyBlu - Go girl go! I’m so happy to hear this good news. As far as being a wreck…it’s a mystery. I had my first panic attack AFTER I completed stage 2 treatment. No before, not during but after. Sometimes my body has a mind of it’s own. Be extra kind to yourself and do whatever it is that gives you a sense of calm.
Dancemom - You’ve been through a lot lately. Im glad you’re back here to dance!
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Congratulations on all the good news!!!
Tany
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DanceMom, best wishes for your recovery.
KatyBlu, congratulations on the good news the regression on lesion activity. I totally understand being a wreck after getting good news.
I've been feeling unsettled too, after being told I'm in remission (which I know is really NED.) We've been so focused on not giving up hope, getting some real hope is weird. It's a bit like I've been pulling on a rope, trying not to let go -- and then suddenly there's less tension and I'm trying to catch my balance. My focus has been on doing everything I can to boost my immune system and "starve" the cancer -- a pretty strict regimen of Ibrance and anastrazole, diet, exercise, sleep hygiene, meditation/prayer, supplements, even a long course of IV Vitamin C. So if NED continues, can I slack off on any of that? The temptation is there, but then will the cancer come back immediately? I'd love to at least have my port removed, which I've had for over 2 years. Then I remind myself MBC is considered incurable.
That's my stream of consciousness for this afternoon. Best to you all for the Memorial Day weekend.
Ann
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katyblu, I totally get it. I can't explain why we feel so (I can't think of the right word) after we get positive news about our scans. We think, "Yeah, but what if???" You'd think we'd celebrate, but no. I have a blog and I wrote about that. I wrote about how we are given a reprieve, but it feels more like a stay of execution. We still feel like we have a death sentence hanging over our heads, but we've been granted a three-month reprieve until our next set of scans. It may not make sense, but it's our reality.
Local pharmacy has been TWICE unable find my Ibrance when I go to pick it up. I'm told it's not there, I tell them that I have the delivery confirmation from UPS, and they still can't find it. That was yesterday. I called again today. "Oh, yeah, it's here. It's in the "specialty pharmacy bin." Guess I'll know where to tell them to look next time. Sheesh.
Carol
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Thank you ladies! Yeah I guess it’s like the let down of adrenaline. I’m hoping this weekend at the beach will bolster my feelings. It’s good to know that I’m not alone in feeling this.
I hope all you ladies have a wonderful weekend!
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I also agree about feeling inexplicably down after getting good news - and then I feel guilty that I'm not feeling happier. I hate the word "should" and yet found myself telling myself, "you should be happy", before I reminded myself "shoulds suck". It does seem like the letdown after adrenaline, all the anxiety and worry and physical and emotional stress, then bam.
And then it goes on and on, since it's not like we're getting the news, hey, you don't have cancer! Just, hey, you don't have more cancer that we can see on this scan.
Phooey. But hurrah for good news all the same. Love to you all ❤️
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sunshine, thanks for the rx reminder!! I am currenly taking the package I had left over from my Dec shipment when I went on my break. I better call and make sure everything is set up to send me a new one in 2 weeks!
No idea about ned nead or anything. No scans until exchange I think? Can't do it for another 5 months earliest, so I was hoping I could wait until the following summer, so as to not miss so much work. MO doesn't like that idea. A few more after check-ups and consultations to make next plan.
About the mixed feelings- I find it all exhausting. Each round the doctors seem very pleased with the results, but then I wait for the next little nibble of information about what comes next. I asked if I can travel internationally to see family in August (its been 3 years!). MO said to go ahead and make plans. Last time she said that I wound up canceling Christmas plans to quarentine before surgery...its like I can never see beyond the next corner. Sigh.
Seeing everyone's good news helps a lot
Thanks for all the support
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Katyblu yes wow the beach should do the trick!
Ann top and sunshine 99 I concur with the empty feeling of dread even when we hear good news. It's exactly like a stay of execution except that we're free to live as best we can while we await the next PET, CAT, MRI verdict.
I was talking to my friend about Memorial Day Weekend barbeques and how we used to get dressed up in summer clothes and welcome summer. I used to live in NY and this is the weekend where the beaches open, whether it's cold or not no one cares they just show up.
Have a good weekend.
Tanya
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Hi, everybody! I've been getting in here regularly (finally!) and catching up on everyone's news.
As for the weird feeling when things are going well, my oncologist calls it feeling "unsettled", and I think that describes it perfectly. I am, by nature, a cockeyed optimist, so don't feel it very often.
This winter/spring, I had an unsettling issue with something that showed up on my PET scan in early Feb. To summarize, it was "something" on the same vertebrae where my only metastases was (T-11), so was concerning. Got an MRI, planned for radiology, etc. Turns out, no one thought it looked (or acted) like cancer, so decided to leave it alone for a few months. I had the follow-up PET scan last week, and results are great; whatever it was - they're thinking hemangioma - has resolved. All my elevated numbers are down, all my low numbers are up... and I'm back to a 6-month scanning schedule. Works for me!
I start Cycle 64 of Ibrance 100mg (with Letrozole) on Tuesday, with no reductions or pauses along the way. Feeling extremely blessed. Wishing success to all.
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Just wanting to get the word out about a new weekly Zoom meeting getting set up. You do not need to be working to attend this meeting but the intention is to have a time that will work for those of us that can't make the current Zoom meeting times that are held during the work day. Here's a link to the thread for the input on a time and day that works for you: https://community.breastcancer.org/forum/8/topics/882768?page=1#idx_3 . Thank you!
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Ciaci, so happy for your news.
Cowgal, thanks for the word on the Zoom meeting.
Speaking of unsettling, when I went this morning for my labs and go ahead for the next Ibrance cycle (#9), I reminded my MO that I've been on a 3-month CT scan schedule, which would mean early July for the next. He said the oddest encouraging thing -- that since it will have been a year since my last PET scan (the one that told us I had MBC), that he would like to do a PET instead. He said the last CT scan really didn't show anything and if the PET were clear too, I might not need to continue treatment. I've never heard anything like that from you dancers! But then he's also retiring at the end of June, and I'll be seeing how I like his replacement in July. So I took his comment with an enormous grain of salt. I know some people can be super responders to treatment, and I'd love to think I could be one, but he threw me for a loop.
Happy summer!
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My MO confirmed that I have Complete Metabolic Response after 5 cycles of Ibrance, I hope this indicates good prognosis ?
Anyone has had early CMR ?0 -
Congrats malebc!
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Hello to all. This year I learned to substitute the word “could" for “should". So, instead of “I should feel happier”, the thought would be: “I could feel happier." when you get a good scan. But you don't. So what. Let yourself off the hook and don't judge yourself with lots of shoulds. Let your feelings be what they are. I think I read about this in a book about self compassion. It's a wonderful topic and great to practice.
So happy to hear of so many good scans. We're all still living with mbc, which color our feelings surrounding good scan results. When my results are good, it is more a feeling of relief than happiness. I'm glad to get them out of the way for the next few months so I can move forward with life for awhile.
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Well said, divine! I had never thought of it that way.
Carol
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Devine -I love your devine words of wisdom. Thanks.
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On Friday I got the results of my latest scans and they are stable I was slightly beating myself up for not being over the moon with my good news, changing should to could has really helped me so thank you so much and I am going to work on just accepting my feeling and not try and force myself to feel something I don't. I don't hide my diagnosis but don't broadcast it either in work for example I say its treatable but not curable, however as more people know about my cancer I find it a bit of a burden when I am due for the results of scans to have people asking my what the results are. I wish it was only my husband that asked my about scans.
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sunnidays, it's kind of a conundrum - asking about someone's scans or test results. Do we not bring it up and risk being thought of as uncaring? Do we ask and feel like we're prying? It's different here on the forums, because we're all in (sort of) the same boat. Do people on the outside know how it feels to be told we're stable? Do they know what to say if we are or are not?
We're happy we're stable, but we still have cancer.
So, to all who are stable - I'm glad, but sorry you still have cancer. To those with progression - I'm so sorry. Cancer sucks! Either way - (((hugs)))
Carol
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Hi,
I’m De Novo since Jan 2022. On Ibrance had to take an extra week off due to low WBC. I saw many women had lymph node removal at stage 4. I want mine out, it’s the problem for me. I will say Ibrance completely shrank the breast tumor it’s gone, it’s healed bone Mets except for 3 T7,T 8 and one on my 4th left rib. But the Axillary lymph although shrank 50% from 3.4 cm to 1.4 cm in 5 months but still lights up. I have 3 other nodes in the same area. No one seems to want to radiate or remove. As I understand it they want me to be more stable and see if it resolves.
What have you ladies experienced with lymph involvement?
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Devine - great to see your post. You were one of the first to respond to my initial post in Stage IV back in 2019 and were so kind and uplifting to me, I can't thank you enough - I will never forget it:)
Sunshine99/Sunnidays and all - yep. The scan waltz is super weird. MOST people who are in my daily life (work and neighborhood friends) don't really know the extent of my recurrence. It's easier on me. Scans every quarter. I get tense and a bit bitchy right before which is the scan anxiety and then I breath a sign of relief once I have results (so far as they have all shown that treatment is working well). I hurry up and make plans for the next 10 weeks....until.....the next scan is coming up. This scan waltz cycle I have plans for two months post scan - WILD!
MaleBC - I am so happy for you with your NEAD response! My onc. will never say I have had a complete metabolic response as there are microscopic cancer cells circulating...once the horse has left the barn theory. However, stable or NEAD or complete Metabolic response are all fantastic!
AnnTop - I am happy for you as well. I am surprised that your MO would consider taking you off systemic drugs, keep us posted on that! I am pretty sure you are (were?) ogliometastatic but it still seems outside of "typical" treatment once a patient has had cancer cells pop up outside of the primary tumor.
Ddil - My node experience is as follows: 2008 I was node negative stage 1 (3 nodes removed during surgery (sentinal node biopsy, none had cancer cells). Chemo, radiation and 7 years of femara. 2019: recurrence of BC only in distant nodes. Starting at my superclavical and extending into my thoracic nodes. I have had them all resolve per petscans after 7 months on Ibrance/Faslodex. NEAD since then which is almost 2 years of NEAD scans. They did not surgically remove these nodes as the superclavical node was too close to a major artery (it was difficult to get a biopsy) and I had lost my voice due to the pressure of the node on the left laryngeal nerve so radiation of that area was not advised either. Chest nodes were very deep. None of them light up now. My voice came back once the superclavical node was clear, which was amazing according to my Otolaryngologist.
Stable disease is as good as NEAD according to my Medical Oncologist. I understand wanting to have the aux. nodes removed. Could you get a second opinion since it is important to you?
RK2020, happy to see your post!
Hope everyone is doing well and staring to enjoy summer
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Thank you, Divine for good advice on the could for should. And thanks, AprilGirl -- I agree about the circulating cells.
MaleBC, I found this passage on "complete metabolic response" in an article at The role of PET in monitoring therapy - PMC (nih.gov):
"In our facility we have developed and use a standardised nomenclature for qualitative reporting of serial FDG PET scans in therapeutic monitoring that can be applied to all tumour types. In our schema, a complete metabolic response (CMR) is defined as a return of FDG uptake in previously documented lesions to a level equivalent to, or less than, residual radioactivity in normal tissues within the organ in question. A partial metabolic response (PMR) constitutes a significant reduction in FDG uptake in tumour sites based on visual inspection of appropriately displayed comparative images. Stable metabolic disease (SMD) and progressive metabolic disease (PMD) are defined respectively by a lack of change, or an increase in the intensity and extent of metabolic abnormality in a pattern consistent with tumour growth. We have reported that powerful prognostic stratification is provided using this schema for the evaluation of therapeutic response to radical radiotherapy in patients with non-small cell lung cancer (NSCLC) when patients are imaged 4–12 weeks after radiotherapy [11]. The frequency and prognostic value of a CMR are likely to be influenced by the responsiveness of the tumour to treatment, the biological aggressiveness of the disease process and the timing of the follow-up scan after treatment. While patients with a complete metabolic response will not necessarily be cured, it is likely that the majority of those patients who achieve a durable remission of cancer will come from this group of patients. Supporting this, the prognostic value of a complete metabolic response on qualitative evaluation of FDG PET after completion of chemotherapy has also been demonstrated in lymphoma [12]."
CMR is a good thing and indicates a good chance at "durable remission." That's what we all hope for -- each period of NED/NEAD buys us time for new, more effective treatments to emerge.
Best wishes to all!
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Anntop: Thank you very much for sending me this very useful article. So it means Complete Metabolic Response can be termed as Remission ?
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Waving hello to all the ibrance dancers, so good to see people here! Going to the theater tonight for the first time since the start of the pandemic, realize due to the timing of the play I will either have to take my meds really early or really late beyond the usual time I take them. I think I'll take them late, am almost at the end of the cycle and hopefully this will be okay!
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I wouldn’t worry cakes. Just take them as soon as you can. Enjoy the theater!!
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I haven't posted for awhile. I have lobular MBC with liver and bone mets. Was started on Letrozol and Verzenio 150mg in 7/2019. Then dropped to 100mg Verzenio for 26 months. My scans improved and remained stable, but it affected my nutritional status big time - low protein, low albumin, low B12, low Vit D - regardless of diarrhea control and high protein, nutrient dense diet, and supplements. Switched to Ibrance at 150mg 10/2021. Now on 100mg and my ANC has stayed just above 1000. It has taken about 6 months for my protein and albumin levels to return to normal and I feel so much better. My scans have been stable until now. Bone and chest scans remain stable, but now I have a small .6 mm suspicious, indeterminant lesion in my liver. My MO has suggested repeat scan in 2 months, then change treatment if scan indicates. The treatment change we discussed is starting Fulvestrant and maybe participate in a study with another drug - I don't know all the details. Or she mentioned switching back to Verzenio. Not sure waiting two months for another scan is right decision given the oft repeated general advice of "treat early before problem gets bigger". MY MO does not use tumor marker scores to make decisions. Any comments would be welcomed.
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Dear Weninwi,
I, too have lobular. My oncologist and I are probably moving towards the same issue -- a treatment change. I've been through Ibrance with fulvestrant, keytruda, xeloda, and now currently on neratinib.
For what it's worth, my MO just started me on every two month scans to watch things more carefully. That's the shortest period since MBC that I've had between scans. I don't think that the treating sooner rather than later is really the buzzword with MBC. My MO does use tumor markers, but she also uses and relies more on scans.
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