Ibrance (Palbociclib)
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Had my cancerversary three days ago - six years for me. Got the results back from my scan on Friday: new growth in the lymph nodes. Multiple nodes showing growth. No new action in the mets, which haven't grown since Tamoxifen knocked them out, in the beginning of my "journey." The primary tumor shows no growth according to the radiologist, but my oncologist thinks it has grown. My onc wants to take me off Faslodex/Ibrance and put me on weekly Taxol. I don't want that, but I don't know what else to suggest. I'm already alone, in a pandemic and we can't even go outside until the AQI falls - currently our air is Hazardous. I think it's a bad idea to start IV chemo at this time. I'm not sure how long I have to think about this, but it may come down to accepting that my time is nearly up. I feel that strongly about trying to do chemo without any humans to support me in my life away from the clinic (in the clinic, the care is great.)
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Meredith Viera (tv host) will be hosting a webinar for MBC and other breast cancers on Sept 22nd at 3P. Pfizer is the one sponsoring. Thought some of you might be interested. If you pull up this site you can read what is said. Webinar:ESMO Post Show:Highlights from the virtual conf. If you can’t find...you can go to Meredith Viera and find that way. You need to register.0
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Look under Meredith Viera she is doing a separate show on MBC. Check out both. So sorry to hear about Penny. Stay positive and stay strong. Love you all.0
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Here's the link to register for the September 22d webinar concerning ESMO that Airlinegal mentioned above --
https://pages.questexnetwork.com/ESMOPostShow-0922...
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NineTwelve- Do you have Bestbird's guide? May help you determine possible next options. Have you done Foundation One studies? That would show possible mutations and treatments that may be good for you. Tested for PIC3CA? That would allow Piqray-- pill form. I understand your hesitation doing weekly IV chemo with the pandemic and the poor air quality you are living in right now. I also REALLY understand your hesitation with being alone. I too am alone in this cancer battle. I think about when/if I need to do IV chemo as I do not have anyone I can rely on to help me.
Anyone with more ideas for NineTwelve? Hope more posts come in.
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NineTwelve,
I second Candy's comments. I'd want a Foundation One or Tempus or whoever tissue biopsy (if possible) or a blood biopsy like Foundation One or Guardant360 to see what mutations you might have.
On the chemo front, instead of weekly Taxol, you could ask about Xeloda. Many folks on these boards have been/are on that.
Also, I know you don't really want to go out, but you could try and get a second opinion from another oncologist. Some will do them via Telehealth appointments at this time. You should look for a doc at an NCI/NCCN affiliated teaching hospital.
Hope hit helps.
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NineTwelve, since your progression does not appear massive or organ-threatening, it might be worth trying a small change first - such as switching from Ibrance to Verzenio, which has single agent activity, if you can get your doctor and insurance to approve. I wouldn't drop the Faslodex, since it seems to still be working on your mets, just give it a different "boost" with Verzenio rather than Ibrance.
The other alternative, as BevJen said, would be Xeloda, at least to tide you over until either the smoke/Covid situation improves or until oral taxol becomes available (FDA has to make a decision to approve or reject the NDA application for oral taxol by February 21st, 2021, and there isn't much reason for them to not approve it; should be "on the shelf" soon thereafter).
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Thank you Piggy, Bevjen, candy, airlinegal. Was tested to see if Piqray might help, but no dice. I will be getting a new biopsy on the nodes, in case there is something else that will work. My onc doesn't want to try Xeloda because I have super low white blood cell counts and he says the low dose weekly Taxol is one of the mildest in terms of side effects. I downloaded the MBC guide and will study it. For now, I'm still doing Ibrance/Faslodex. And living one day at a time, as recommended by mental health experts everywhere. : )
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nineTwelve- your white count may improve off of the ibrance. I had a super low white count On ibrance and much better on AA, now on Xeloda and it gets super low and I need 14 days off (14/14) I do think that a 7/7 schedule would be better for white count (my MO disagrees- so that’s a thought.
I understand about the IV chemo
The air quality added to the shelter in place is suffocating ( literally) our air got better a few days ago in the Bay Area- what an uplift. Hoping for your air quality soon.
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Ladies: since I am no longer on Ibrance, I assume I should "technically" not be on this blog. You gals are so supportive and encouraging I would like to stay. I won't post a great deal but would like to update things from time to time.
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WANDERING- We absolutely want to get updates on your journey. Good luck to you and I hope to hear good news from you soon.
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NineTwelve and WANDERING...good luck to both you! WANDERING, yes please stay on this thread and keep us updated.
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Ninetwelve and wandering, good luck to both of you.
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Wandering, being on Ibrance is what brought us all together but it isn't what keeps us together. We've encouraged each other and prayed for each other and just switching meds isn't going to change that.
Stay in touch and know that you are loved and still dancing with us, sweet friend.
Love from PatGMc
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My ibrance and femera has come to and end after 28 months, increased TM lead to progression evidence. Interestingly, my MO used my original biopsy (1/18) to test for pi3k mutation And it came back positive. I wanted to share that in case someone else is finding themselves in a situation. So, I will move on to Piqray and Faslodex shots. I’m hoping I can move back to ibrance some day or one of the new CDK’s. Thank you for all the support hereeven though I mostly read silently. Keep dancing friends💞
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Anewbreath- Good luck on your new treatment plan. Keep posting here even though you will not be on Ibrance. Let us know how you are doing.
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Anewbreath, good luck on Piqray. I hope you get a long run on that combo too. As Candy said, please let us know how you are doing.
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Anewbreath.....stay strong and keep us posted0
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Anewbreath...best of luck on the Piqray. As others have said, please keep us updated.
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Anebreath - I hope all goes well for you with a new treatment plan, keep us posted even though you are no longer on Ibrance. Interesting that your DR tested for mutations on the original biopsy. Was the test a new one? I wonder if the facility/DR still has my 2019 biopsy, and if they would be able to test as new tests come up. When Dx'd my DR had a lab test for known mutations specific to BC. Insurance is still trying to deny, claiming that the test was not relevant to diagnosis or treatment.
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Anewbreath thanks for letting us know about your dr using an old biopsy sample. Sorry to hear of the progression. I know there was a piqray thread. stay in touch.
Tanya
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I-beat-it---- Didn't you have PET last week? Any news?
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Hi Candy, thank you so much for thinking of me. It was scheduled few days after blood test+ injections I felt very weak so decided to postpone it, at the moment I am not officially with any MO (!) I’ll wait to see what new MO suggests about pet scan, the appointment is Friday via zoom, great! I haven’t examined for 6 weeks now and zoom appointment, seems not a good option but the only option, and still I am not sure if the new MO will accept me or willing to continue the current treatment or change the current treatment, if she doesn’t accept me I don’t have heart to back to the old MO, all stress me out. I guess a bit of enjoying the state of no news good news (not taking pet scan in the middle of this uncertainty) not a bad idea, I know it is wrong, just need a short break. I appreciate anyone’s opinion about this situation...
How are you? I am sure 5/2 works well for you, I like those oncologists who take risks -like your new MO- instead of change the course of treatment simply. Best of luck with scans, I guess it is due.
I wish everyone a happy Monday.
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I-beat-it--- Let us know about how the Zoom appt on Friday goes and the next plan for you.
I am in waiting mode too. I have next CBC to check white count/ANC this Wednesday. That will be before beginning next cycle of Ibrance. My ANC was 900 2 weeks ago-- mid cycle. Now we will check at the beginning of next cycle point. I have scans next Monday the 28th so we will see if any progression. If I am still stable, then we will concentrate on the ANC and if the 5/2 schedule is the way I need to stay for now. I am praying for a good scan and good labs, and I can just continue 5/2 Ibrance and chill for the next 3 months. Tired of drama. Just changed MO's, changed to the 5/2 schedule, and now the scans due. I am ready for some calm.
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I've just developed ONJ - on Zometa every six months. what do you eat and how do you manage the pain? I haven't been to an oral surgeon yet. thank you for any help!
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Went for monthly visit. After having two great months above 1.0, I was at .71 today. I don’t get it. I was doing great. Now I have to hold an extra week. I wish I could figure out what was different those last two months and do it again.
Candy, I wish you some calm as well. You deserve it.
Bkirby, I’m sorry, I don’t have an answer for you, but I hope you find relief soon.
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Dear bkirby,
Welcome to the BCO community. We are sorry that your cancer and the side effects of treatment have brought you here. We are glad that you reached out to our members for support. While you are waiting for some responses check out this information on our main site about ONJ. Let us know how we can help you to find what you are looking for here on the discussion boards.
The Mods
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bkirby welcome to this thread. There are a few that post here that have had issues with jaw. I take zometa once every 3 months. Hopefully you’ll find a dentist that can help.
Tanya
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bkirby,
Sorry to hear you have developed ONJ. I also have ONJ. The oral surgeon should be able to help you with a treatment plan. I don't have any pain right now so I don't have any recommendations for the pain.
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Hello all.
I have been looking at posts off and on for the little over three years since I was diagnosed. This will be my first post.
I started treatment with kisqali and femara. That lasted about four months. It did a great job on my cancer but also did a job on my liver. So after about four months of just taking fulsolex, I started the Ibrance 125 mg/Femara combo. I had to go down to the 100 mg due to low ANC. I've been on that dosage for about a year and a half. I was doing fine, but the last six months I have been struggling with WBC, RBC, and total ANC. I've seen others hold for a week or so, which I have had to, but my MO also has me get shots of Granix to boost my ANC. So that is usually a series of five shots once a day. Those are pretty painful for my bones. I haven't seen anyone else talk about doing this treatment. I'm concerned that I've had to do it every two months for the past 6 months. My WBC and RBC don't seem to recover very much on my week off anymore either. Just thinking I might be towards the end of this treatment. Which is sad as I really haven't had too many side effects other than my counts. Well, and achy bones. My markers have been steadily increasing and there is some increased uptake in my latest PET scan. I have bone mets, rib, spine, and pelvis area.
Most curious about how others have done toward the end of their Ibrance treatment. Realizing that there may not be too many of them here on this feed.
Thanks.
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